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DISABLED PEOPLE AND EMPLOYMENT:
RECOVERING HISTORIES
AND CONTEMPORARY PRACTICES
PETER WHEELER BA (HONS)
DOCTOR OF PHILOSOPHY
UNIVERSITY OF WARWICK
WARWICK BUSINESS SCHOOL
OCTOBER 2004
TABLE OF CONTENTS
ACKNOWLEDGEMENTS
DECLARATION
ABSTRACT
ABBREVIATIONS
INTRODUCTION 1
The place of experiential knowledge in disability research 12
Sources of data 18
Thesis outline 18
The social model organisation 21
New deal for disabled people 22
CHAPTER 1: Understanding Disability and Approaches to Equality 26
Models of disability 27
The quantification of disability: reinforcing a medical model 34
The first OPCS survey 35
The second OPCS survey 38
ICIDH-2 42
Equality for minority groups in organisations 45
CHAPTER 2: Research Concepts and Analytical Framework 50
Antonio Gramsci 50
Ideology 55
Common sense and good sense 58
Hegemony 62
Intellectuals 65
Assimilation and integration 68
Differentiating organisational ideologies 74
CHAPTER 3: Research Methodology 80
Methodological approach 80
Accessing and using documentary data 85
Ethnographic research 89
Research interviews 96
Disability and research interviews 97
Researching disability 99
Emancipatory disability research 100
Accessing research organisations 108
Gaining access to NDDP and SMO 111
Generaliseability 115
CHAPTER 4: An Historical Reflection on Disability (I) 117
Claims for a historical continuity of oppression 118
The politics of disability 122 Disabled people victims of medical discourse 127
The rise of a disability movement 130
Disabled people and charities 137
Henshaw’s Blind Asylum 138
Thermega Ltd.: an ‘industrial experiment 145
Summary 150
CHAPTER 5: An Historical Reflection on Disability (II) 153
Disability post-Second World War 154
Sheltered and subsidised workshops 160
The Disability Discrimination Act (1995) 163
Impairment 165
Substantial and long-term effect 166
Normal day-to-day activities 167
The DDA and the environment 168
Summary 170
CHAPTER 6: Assisting the Employment of Disabled People? 173
Politics and not-for-profit (NFP) organisations 174
NDDP: the provision of employment opportunities 177
SMO: the provision of employment opportunities 192
SMO: internal employment practices 207
Summary 211
Conclusion 212
CHAPTER 7: Staff Recruitment and Training 215
Recruitment practices in NDDP 216
Recruitment practices in SMO 218
Job-related training in NDDP 221
Job-related training in SMO 222
NDDP: staff disability awareness training 226
SMO: staff disability awareness training 228
Summary 232
CHAPTER 8: Overcoming Access Barriers 235
NDDP: defining and enabling access 236
SMO: defining and enabling access 240
Summary 251
CHAPTER 9: Research Summary and Conclusions 254
Is the social model of disability new? 254
Organisational comparisons 261
Implications of the research 265
Policy implications 268
Research limitations and future proposals 271
CHAPTER 10: Conducting Research and Writing a Doctoral Thesis: 273
Reflections from a Disabled Perspective
Embarking on the research: working with supervisors 273
Embarking on the research: finding a place to work 275
Accessing buildings and information: non-medical helpers 277
Accessing information: adaptive technologies 279
Writing the thesis: computer-generated speech systems 283
BIBLIOGRAPHY 290
ACKNOWLEDGEMENTS
There are too many people who have helped in the course of this research to list them all here, consequently when naming organisations my thanks go to the individuals who made the work possible.
Hence I would wish to acknowledge the assistance given by staff at both Manchester Metropolitan University and the University of Warwick. Also, the many archivists from: the Modern Records Centre, University of Warwick; the National Film Archive; the Working Class movement library; the British Library Newspaper Archive; the RNIB research library; Henshaw's Society of the Blind; John Ryland's Library, and the House of Lords archive.
Anonymity dictates I cannot acknowledge individuals in both participatory organisations, NDDP and SMO and individual disabled people who both informed and criticised as the research developed.
There are two principal non medical helpers who have assisted from before the research commenced often without receiving payment: Sue Paraszczuck and Neil Terry. Sue had the unenviable task of trying to understand the purpose of the research to work as a sighted helper in archive and library searches. Neil acted as an internet and electronic journal searcher; I know both would agree the experience has been interesting and often extremely funny.
Dr Lynn Robson has edited the final version raising many issues which assisted in obtaining clarity of writing and making the work conform to the visual standards required for a Ph.D.
Whether due to bad luck, bad attitudes or a direct function of working with me, during the course of the research I have had 3 second supervisors, none of whom lasted more than a matter of months. Only my director of studies Dr. Ardha Danieli has had the fortitude to stay with the research to the end. It is the support, encouragement and criticism given by Ardha that has enabled me to complete the research. My only remaining prayer is that she has destroyed all my earlier writings.
Abstract.
This thesis argues that the claim that disability is capable of reduction to two polar opposite models of disability cannot be sustained. Drawing on historical data, it is shown that for over the past century organised groups of disabled people were proactive in affecting social change without recourse to medical intervention, fighting for economic emancipation. Hence claims that the social model of disability represents a new understanding are incorrect. It is shown that the dominant traditional intellectual understandings of disability were not reducible to simplistic oppositional medical/social models, but rather a more complex combination which acknowledged both components in the construction of disability. To test this understanding, a comparison was made between two contemporary organisations who have the mission of engaging disabled people in work, and might be expected to operate to the oppositional social/medical models.
Through an ethnographic study in an organisation run and controlled by disabled people and participatory observation in a government employment initiative for disabled people, it is shown through the organic understandings held by stakeholders in both organisations that mutually exclusive models could not be seen in everyday operations, and despite one organisation working explicitly to a social model of disability, they could not escape the reality of impairment when claiming that disability was singularly the result of disabling attitudes and social structures. Hence the social model organisation could not provide any better employment opportunities than one operating to traditional intellectual understandings.
Through considering my own impairment and the traditional prescriptive methodological texts which assume a non disabled researcher, a methodological contribution is made by challenging understandings held in both positivist and interpretive approaches. It is also argued, that emancipatory disability research by disregarding any consequences of impairment, fails to make the challenges necessary to provide a more inclusive model.
ABBREVIATIONS
DDA Disability Discrimination Act
DRC Disability Rights Commission
ESWS Ex-Services Welfare Society
ICIDH International Classification of Impairments, Disability and Handicap
ISRM Institute of Sport and Recreation Management
MOL Ministry of Labour
NDDP New Deal for Disabled People
NLB National League of the Blind
OPCS Office of Population Census and Statistics
PKTBAC Printing and Kindred Trades’ Blind Aid Committee
PNP Publicly Funded Not-for-Profit Organisations
RNIB Royal National Institute for the Blind
SMO Social Model Organisation
UPIAS Union of the Physically Impaired Against Segregation
WHO World Health Organisation
Introduction
For the past one hundred and fifty years, the issue of how to engage disabled people in employment has been a concern for business and government in the United Kingdom (Henshaw's 1928; Humphries and Gordon 1992; Thermega 1927; TUC 1943b); disabled workers (Blind Advocate 1918; Mahew 1861; NLB 1899; TUC 1945), and government (HMSO 1951; NLB 1920; Tomlinson 1943; TUC 1941). Since the latter half of the twentieth century, successive governments have presided over an increase in the unemployed disabled population which, through initiatives including ‘New Deal for Disabled People’ (NDDP), the present government is currently attempting to reverse.
In the mid 1970s, a combination of the effects of war, politics and economic policy affected the employment of the disabled population in many Western industrialised countries (Bell 1993; Bowitz 1997; Catalano & Kennedy 1998; Riphahn 1997; Snower 1995). One event which had the secondary consequence of increasing the numbers of disabled people unable to find work was the decision by OPEC (the association of major oil producers) to quadruple the price of crude oil and reduce output (Turner 2001). These actions were taken due to the disenchantment of (primarily) Arab oil producers with the support given by many Western countries to Israel preceding and during the Arab/Israeli war of 1972 (Turner 2001, 311-13). The effect of the increased price and reduced supply of ‘crude’ was to plunge many Western economies into recession (Bell 1993; Powell 1995; Snower 1995). For many organisations, such a recession resulted in restructuring, downsizing or even closure (Powell 1995).
Unemployment is a politically ‘sensitive’ issue, which governments in the UK have historically attempted to manage and control (Toynbee &Walker 2001). One measure which served to hold down the headline unemployment figures was the encouragement given to workers to leave the Labour market by gaining access to the invalidity rather than unemployment benefit systems (Toynbee & Walker 2001).
This encouragement allied with Britain’s complex benefit system had financial implications for individuals, the organisations they worked for and for government (Snower 1995). For individuals, invalidity benefit (IVB) provided a higher level of income than unemployment benefit (Ward 1996) which, some have argued, conferred the perception of social stigma and lower status on its recipients (Argyle 1989). The relative benefits offered by the exit-route from the workforce to invalidity also served the interests of employers. Resistance to losing their jobs, particularly amongst older workers, could be reduced when workers were presented with a more acceptable exit strategy than unemployment benefit (Snower 1995). So, faced with job losses, many individuals accepted invalidity benefit as the most appropriate Labour market exit strategy (Disney & Webb 1991; Molho 1991). General practitioners were the gatekeepers to IVB and could use their discretion to determine whether a person with a health condition was likely to be able to return to their previous occupation. Factors including age, the skills the individual had and their ability to retrain in other occupations were all taken into account (Ward 1996).
The effect of such policies held down unemployment figures but inevitably increased government spending on disability benefits (Bell 1993; Major 1993; Snower 1995; Ward 1996). Claimants of IVB rose from 505,000 in 1977 to 1.77 million by 1995, costing the Treasury an increase in IVB benefit payments from £678 million in 1971/72 to £7.75 billion in 1994/95 (Ward 1996). This increase did not go unnoticed by government and Prime Minister John Major made the following comments in Parliament:
Frankly, it beggars belief that so many more people have suddenly become invalids, especially at a time when the health of the population has improved. I make no apologies for looking at this area of expenditure. (Major 1993)
Consequently, from the early to mid-1990s, government attempted to reduce the disabled population through redefinition, using stricter criteria to determine those who could claim to be incapable of work and by introducing anti-discrimination legislation, which should have had the effect of increasing employment opportunities and safeguarding against discrimination in the workplace. The response of the Major government was to alter the entry criteria for disability benefits for working-age people by prescribing a strict set of tests based on physical, sensory, and mental abilities, which applicants had to be unable to complete if they were to be defined as disabled (George 1999; Ward 1996).
Invalidity benefit was replaced by incapacity benefit, with the changes enshrined in legislation under the 1994 Incapacity for Work Act (IWA). The IWA clearly linked the restrictions caused by impairment to the potential ability of the disabled person to perform any type of work, irrespective of age, previous work history, experience or skills (Benefits Agency 1996). The IWA does not allow consideration of any structural or environmental barriers in the assessment of an individual’s ability to perform any form of work. This changed with the introduction of the 1995 Disability Discrimination Act (DDA).
The DDA offers legal redress against discrimination in many areas of social life including employment if such discrimination can be shown to be based on disability. The DDA defines disability in relation to severity of impairment; the impairment’s effect on day to day activities, and its longevity (Doyle 1996; Cooper & Vernon 1996; Gooding 1996). However, by focusing on impairment and its consequences the DDA, like the IWA before it, emphasises the individual impaired body as the prime cause of disability.
The DDA has been criticized for its reliance on the measurements required to determine who is covered by the Act (Rights Now 1995; SCOPE 1995) and for the lawful discrimination that it allows against some disabled people with regard to employment (Barnes 1997). As Barnes argues, it is perfectly legal to discriminate if a person is not disabled enough to fall under the remit of the Act, or if the employment of the disabled person can be shown to damage business (Barnes 1997). However, it would be incorrect to claim that the DDA does not recognise that there is a social component to discrimination against the disabled. For example, employers are obliged to make ‘reasonable adjustments’ to facilitate the employment of disabled staff, and in specific cases, such as facial disfigurement, it is illegal to discriminate on the grounds of the attitudes of others towards the disabled person (Partridge 1996). So, although heavily influenced by medical measurements of impairment and its consequences, some environmental barriers and social attitudes are also acknowledged as disabling factors by the legislation.
Whilst offering protection against discrimination for some disabled people, the DDA also had an effect on employers who were required to introduce equal opportunities policies which protected disabled people, thus augmenting existing policies relating to race and gender discrimination (Bourne & Whitmore 1996; Cooper & Vernon 1996; Doyle 1996b; Gooding 1996; Northern Officers Group 1996; Woodhams 2000). However, despite these legislative interventions, a financially state-dependent disabled population continued to increase with the latest statistics identifying 2.7 million receiving incapacity benefit and showing that the combined cost of all disability benefits to this group reaching £19 billion annually (AccountAbility 2004). It was against this background of rising levels of disability that New Labour swept to power in 1997 and argued for the greater social inclusion of disabled people. This was to be achieved primarily by improving their opportunities to gain paid work in open employment (Brown 1999; Harman 1997; Mandelson & Liddle 1996). Since this concept of social inclusion through paid work remains present government policy it is important to consider its underlying ideology and how this has influenced the mechanisms that are currently in place to assist disabled people to break away from state-dependency and achieve social inclusion through paid work.
The electoral success of ‘New Labour’ has been attributed to the party’s rejection of many traditional outmoded ‘Old Labour’ ideologies. These include a move away from central government control of the economy (Coote 2001); an ideological shift away from a commitment towards public ownership (Giddens 1998), and a weakening of the once close links to the trade union movement (Driver & Martell 2000). This ideological shift, often referred to by New Labour as ‘modernization’ has been criticised by some as a move away from collectivism towards individualism (Lavalette & Pratt 1998: 246). This move towards individualism, however, does not mean that the structural effects of policy are of no concern, since funding for many areas of social policy is dependent on projects being monitored to ensure the desired structural policy outcomes are achieved (Prideaux 2001). Many who support this modernization process argue that ‘New Labour’ has attempted to ‘strike a balance between economic success and “social inclusion”, the market and the community’ (Toynbee & Walker 2001; Driver & Martell 2000).
Social inclusion is often thought to be synonymous with excluded citizens finding paid work (DSS 1998). The mechanisms chosen to deliver work opportunities were primarily filtered through training schemes and education (Hyland 2000a, 2000b; Hyland & Merrill 2001) and, theoretically, improved training should increase opportunities to participate in open competition for jobs (Brown 1999; Harman 1997; Mandelson & Liddle 1996). The aim of ‘New Labour’ was to forge a new relationship between social inclusion, citizenship and State. This move towards proactive citizenship was a pivotal concept in what has been termed ‘The Third Way’ (Giddens 1998). ‘The Third Way’ directly links the State to equality and social inclusion, arguing that ‘“the social investment state” defines equality as inclusion and inequality as exclusion’ (Giddens 1998: 102). Some have argued that scepticism towards the State’s ability to provide efficient solutions to social exclusion has also moved the focus away from state intervention towards partnerships (Popple & Redmond 2000). Partnerships are considered by the New Labour Government to be the most efficient use of state and market resources to deliver social inclusion (Compact 1998) and these partnerships have primarily been made between public, private and the voluntary sector (Wickham Jones 2000).
It was against this background of individual responsibility and partnership that the government’s cornerstone project ‘The New Deal’ was launched to combat social exclusion (Carter & Greco 2000; Foley & Martin 2000; Miller 2000; Welch 1997). £5.2 billion was raised early in New Labour’s first term in office (HMT 1997) through a one-off windfall tax on the privatized utilities (Drake 2000). Money was allocated into a series of New Deal programmes, which aligned policy with Third Way principles.
In addition to New Deal for Disabled people (NDDP) other New Deal programmes included those for the young unemployed (Miller 2000; Ritchie 2000; White 2000); the long term unemployed (Layard 2000; Peck 1999), and lone parents (Hales 2000). Of the total financial commitment to the New Deal programmes, £195 million was earmarked for New Deal for Disabled People (Drake 2000) the ethos of which was outlined by Harriet Harmon, Minister for the Disabled at that time, who stated:
This announcement will give a significant boost to those disabled people who want to work. This government wants to give marginalized and excluded people a hand up not a hand out. (DSS 1998)
From commissioned research the government had identified in excess of 1 million working-age disabled people who wanted to work (NDDP 1999). It was argued that if these unemployed disabled people could be assisted into employment, several benefits would accrue. The financial burden of incapacity benefit would be reduced as workers migrated into work and began paying taxes; individual disabled people would enjoy an increase in their income; they would achieve a greater degree of independence from state benefits, and feel more socially included (AccountAbility 2004). Additionally, a strong case has been made that organisations can benefit financially by employing disabled staff (AccountAbility 2004; DRC 2004; Evans 2001; Spechler 1996). For example, Evans lays out the best practice for employing disabled people. He makes the business case that failure to use this talent-pool fully is a cost to business not only in terms of promoting one's company as socially committed but also because it does not exploit the untapped potential of disabled people (Evans 2001). Spechler provides a number of case studies on business profitability that was achieved by employing disabled people, including benchmark examples of positive impacts on quality and employee and customer relations (Spechler 1996). These texts reflect the recommendations set out on the websites of prominent UK bodies including the Disability Rights Commission (DRC 2004) and the Employer’s Forum on Disability (AccountAbility 2004). However, policy and a few positive cases, encouraging as they may be, should not be misinterpreted as the general case.
Research has identified that disabled people are twice as likely as their non-disabled peers to be out of work (DRC 2004), with one third of those who find work becoming unemployed within the following year. Of those who become disabled during their working life, one in six lose their jobs during the first 12 months after becoming disabled (Burchardt 2000). So there appears to be a problem in translating the rhetoric of social inclusion through paid work for disabled people into a working reality. There is a contradiction here between the benefits for government, disabled people and employers. The latest statistics on the success of government policy towards the employment of disabled people reveal that targets have been missed by some considerable amount. For instance, figures show that only 5% of disabled people involved in NDDP have found permanent jobs. From July 2001 to September 2002 1,400 disabled people worked for more than six months after getting help. Furthermore, just 6,099 people were helped into any form of work - far short of the target of 90,000 set (Calvi 2003).
Although to a neutral observer the gap between the rhetoric of social inclusion through paid work and the reality of continued exclusion for many disabled people may appear puzzling, for many in the disability movement this apparent contradiction can be easily understood once different models of disability are considered and the causes of disability are examined. Hence, for the disability movement, the issue has become a political struggle against dominant (mis)understandings of disability which, they argue, are the cause of oppression and discrimination against disabled people. So what follows is a brief summary of the underlying principles of these models.
Models of disability
Many in the disability movement argue that there are just two competing models that attempt to explain the causes of disability (Abberley 1987; Barnes 1990; Campbell & Oliver 1996; Finkelstein 2001; Oliver 1990; Swain et al 1993). The first is referred to as a medical model of disability and argues that disability is caused by impairments – physical, sensory or mental - which are located within the individual body. The second is a social model which argues that disability is a social construction caused by social and environmental factors such as people’s attitudes towards disability and the social construction of physical environments which meet the needs of non-disabled people and disregard those of the disabled.
These two models are seen by many to be mutually exclusive and they lead to very different policies and practices in achieving equality for disabled people. The former model focuses on ‘curing’ the individual while the latter requires changes in the social and environmental factors which cause disabled people to experience their impairment as disabling. Generally it is argued that historically the medical model has been hegemonic and that this has led to the exclusion of disabled people from both material and social benefits (Finkelstein 2001). In order to ensure the inclusion of disabled people into society it is argued that the social model should become the dominant understanding of disability. This change in commonsense understandings has become the causus belli of the disability movement.
Disability can affect many aspects of an impaired person’s life, and since the 1960s there has been increasing focus on specific issues, particularly that of the problem of independent living (Brisenden 1986; Dejong 1983; Finkelstein 2000; Morris 1993). This thesis is concerned with one aspect of disability that has a serious impact on the ability to live independently: the employment of people with impairments. As has already been shown, this subject is highly political (Blair 1997, 1998a, 1998b; Brown 2000; DSS 1998; Harman 1997; Giddens 1998; Mandelson & Liddle 1996; New Statesman 2004) with some authors now arguing that the social model of disability should be placed at the centre of employment policy because it offers greater opportunities for disabled people to find paid employment (Barnes 1999; Drake 2000; Hall 1999; Roulstone 2000).
Consequently, the research conducted for this thesis inevitably has an overtly political dimension at the centre of which are the claims embedded in the social model that concern the ‘real’ causes of disability. Recently, some academics have argued that the adoption of the social constructionist account of disability that underpins the social model is insufficiently sophisticated to explain fully the phenomenon of disability (Shakespeare & Watson 2002), caused principally for many by the neglect in the social model of any sociology of impairment (Abberley 1987; Hughes 1999, 2000, 2002; Hughes & Paterson 1997; Paterson & Hughes 1999).
Others have challenged the validity of the two mutually exclusive models – medical versus social - posited by social model adherents (for example, Lowe, 2001). This research whilst supportive for calls for a sociology of impairment draws on the critique offered by Lowe, to determine if opposing models can accurately represent alternative understandings of disability. Such critics, however, are in the minority.
Against the background of these debates this thesis will address three related questions:
• Is the social model of disability ‘new’?
• Are the medical and social model explanations of the causes of disability really mutually exclusive?
• Can a practical application of the social model of disability facilitate better employment opportunities for disabled people?
The principal architect of the social model of disability is a disabled former academic, Mike Oliver, who drew on the work of Antonio Gramsci to illustrate how a medical model had become hegemonic and was accepted uncritically as common sense (Barton & Oliver 1997, 11). As Gramsci has been used in the past to illustrate the dominance of a medical model, his concepts have been used in this research to determine if the claims for the historical oppression of disabled people can be supported against the evidence uncovered by this thesis. Specific concepts articulated by Antonio Gramsci (see Gramsci 1971) are used to create a theoretical ‘lens’ through which it is possible to examine how effectively intellectuals within the disability movement have promoted the ideology of the social model of disability. Gramsci’s constructs provide an analysis which can unravel some internal inconsistencies within the model. His concept of ‘good sense’ and ‘common sense’ and the notion of ‘hegemony’ are particularly appropriate here. Drawing on Marx’s analysis of the conditions required for revolutionary action, he used these ideas to show how a ‘ruling class ideology’ – analogous here to the alleged dominance of the medical model - can be effectively challenged by creating a critical, consistent ‘good sense’ alternative in opposition to these dominant traditional understandings - in this case, the social model of disability.
Using Gramsci’s ideas this thesis will examine two claims that are crucial to the social model and thus test their validity. First of all it will consider whether the social model adherents’ claim that, historically, there has been an oppressive medical hegemony driving society’s view of disability is, in fact, a valid description of what existed before it was posited as such by these social model advocates. In addition it will examine, by empirical means, whether the social model does represent an unproblematic ‘good sense’ alternative to the alleged medical hegemonic model. A test of whether the social model is problem-free will be if it shows credible potential to become the new hegemony. In other words, if the social model is to fulfill Gramsci’s criteria where it is introduced it ought to be uncritically accepted as ‘common sense’ by a majority of disabled people as representative of their experience of disability.
The place of experiential knowledge in disability research
The role of experiential knowledge has become a key methodological issue for the disability movement regarding how valid research on disability should be conducted and by whom it should be done (Barnes 1996; Branfield 1998; Oliver 1992; Oliver & Barnes 1997; Stone & Priestley 1996).
Experiential knowledge is an important aspect of social research which requires that attention be given to the notion of identity. This has been a concern for researchers for some time in relation to the question of how to produce valid knowledge (Collinson 1992; Parker 2000; Stanley & Wise 1983). In this context identity relates not only to the identities of both researcher and researched but also to the relationship between researchers and the topic of research.
One central aspect of writings on identity and research concerns the means of generating rapport between researchers and researched, as rapport can allow access to knowledge which researchers may otherwise not have access to. One means of promoting such a rapport is by matching some aspects of the identities of researchers and research subjects. For example, some have argued that the degree of trust and disclosure is increased in feminist research when researcher and researched are the same gender and that prescriptive methods for conducting such research are often inappropriate (Oakley 1981). However, others question ‘woman’ as a unitary category, arguing that identities are viewed as multiple, and can vary in relation to context, place and time, which includes the research process (Cotterill 1992; Edwards 1990).
Similar arguments appear within disability research with disabled people also differentiated by many demographic variables including: gender, class, ethnicity, sexuality, age and so forth (Duckett 1998; Humphrey 2000; Morris 1993; Shakespeare 1997; Vernon 1997). However, many supporters of the disability movement have generally elevated a homogeneous concept of ‘disabled’ as the defining feature of identity for disability research. For some the outcome of privileging experiential knowledge is to argue that only disabled people should conduct research on disability (Branfield 1998). Others take a more pragmatic line acknowledging the assistance available from non-disabled researchers whilst arguing that disabled people should be an integral component in all stages of the research process by altering the social and material relations of knowledge production in a new emancipatory disability research agenda (Barnes 1996; Oliver 1992; Oliver & Barnes 1997; Stone & Priestley 1997; Zarb 1997). These authors promote emancipation for disabled people through the adoption of concepts enshrined in the social model of disability. One implication of conducting emancipatory disability research in accordance with the social model is that once the social and material relations of knowledge production are altered to allow disabled people equal access to the research process they are then able to make an epistemological choice of research methods without recourse to any limitations imposed by impairment.
As a blind person who is confronted by very specific disabling barriers, I am able to claim the necessary ‘cultural competence’ required to do disability research, and thus meet one criterion of the emancipatory disability research agenda. However, in my case, simply altering the social and material relations of knowledge production did not provide equal access to all the methodological prescriptions because some consequences specific to my impairment affected the methods I was able to adopt to conduct this research.
The methodological challenges I faced are discussed in detail in Chapter 3 but, briefly, blindness presents challenges for my participation as a researcher if many of the prescriptive texts in either of the widely accepted methodological traditions of social research are to be followed. In the quantitative tradition the emphasis placed by some authors on visual imagery to display results through charts and diagrams (see for examples, Bryman 1988; Denscombe 1999; Kinnear & Gray 2000) would prevent my equal participation. Similarly, when conducting qualitative research, emphasis has been placed on the researcher’s ability to ‘see’ or ‘observe’ social phenomena, this being considered vital in understanding group dynamics, body language, and so forth (see for example, Coffey 1999; King 1996; Slack 2000). It would appear that simply altering the social and material relations of knowledge production without any consideration of the implications of impairment and its impact on the practicalities of research, leaves the impaired researcher in an isolated position and having to defend his/her choice of methodology which may conflict with prescriptive assumptions about the validity and reliability of disability research. This thesis, therefore, challenges some of these traditional understandings of how to produce valid and reliable social research, bringing a different perspective to bear on the longstanding methodological debates on this subject.
The concept of experiential knowledge has been significant in the development of the social model of disability. This thesis, whilst specifically addressing the research questions, draws on my own experience as a blind disabled person in order to reflect on the implications of accepting the term ‘disability’ as a generic descriptor which can be applied universally to impaired people. The issue of the use of terms has been raised here because if the concept of disabling barriers is to be fully understood by non-disabled people then the consequences of impairment also require acknowledgement. It is because of this belief that I define myself as a blind disabled person. In my case, blindness specifically means that the only visual ability I have is to recognize the difference between light and darkness.
The decision to self-define in this way was taken because unless the reader appreciates the nature and severity of my impairment, the question of why and what disabling barriers exist for me as a researcher, and how they are overcome, becomes a matter of mere conjecture. Different impairments require different remedies to overcome the disabling barriers entailed by them. Take the reading of a book as an example. For a wheelchair user there may be physical barriers to gaining access to a library or bookshop or taking a book from a high shelf; for a deaf person there may be no barriers at all. For a blind person, the barrier to reading lies in the printed word itself. However, in itself this argument does not address the issue of why I have decided to define myself as blind rather than what most now consider to be the more politically correct term of ‘visually impaired’.
This decision was based on pragmatism. If I define myself as visually impaired, the reader is again left to speculate on the nature and extent of the impairment and the barriers that accrue. The term ‘visually impaired’ incorporates a range of visual acuity from the mere necessity of wearing spectacles intermittently for reading, to total blindness with no light perception whatsoever. In my case, it is the severity of my impairment that has determined the methods that were available to conduct this research and, from the outset, I have experienced severe doubts about the usefulness of the generic term ‘disability’ on its own to offer an unproblematic and comprehensive definition of my particular life experiences.
There were practical and personal as well as academic reasons for doing this research. These were important because they were not only initially influential in the decision to undertake the research but they also served to help me to understand and make sense of my personal experiences. The initial inspiration for this research came from personal experience following a sudden change in my life. After 20 years of continuous employment, principally in project management in both the petro-chemical and nuclear industries, I became registered blind at the age of 40 resulting in unemployment and dependency on state benefits. Despite several attempts to gain employment, I found that, even for employers who claimed to be well-disposed to employing disabled people, my experience and technical qualifications appeared insufficient to warrant even a job interview. I sought assistance from a disability employment psychologist attached to the employment services. After a half-day consultation it was recommended that I should retrain in a new and more ‘realistic’ career suitable for blind people. The types of jobs that were suggested included piano tuning and bicycle repair.
At the time of my first encounter with the employment service (circa 1994) I had been assessed as being over 80% disabled. This meant that in terms of employment service provision, I was so severely disabled that employment schemes such as supported employment in workshops for disabled people or subsidized work in open employment were not deemed appropriate. After a period of reflection, I realised that my difficulties in securing employment were not a result of a problem with my abilities, but were the result of the attitudes and assumptions others made about how my blindness would affect them. In other words their lack of experience and knowledge of blindness led them to believe that only certain jobs were appropriate for someone with my impairment. This realisation led to me seek a second interview in order to challenge the prognosis of my career potential. The second interview was conducted with a careers advisor rather than a psychologist.
This second advisor encouraged me to study for a degree in order to widen my career options rather than restrict them. These experiences can be seen to reflect two different understandings and approaches to disability. The first was based on the perceptions that my impairment disabled me in the job market. The second was based on a recognition that my impairment need not lead to my being completely disabled and an understanding that social barriers to my inclusion in the labour market could be reduced by the acquisition of further qualifications. This latter premise, however, despite an apparent appeal to ‘the social’ was still grounded in a logic that relied on my individual ‘lack’. So my experiential knowledge produced an understanding of disability that does not fit neatly into the polar opposite constructs developed through the social model of disability. My experiences suggest that rather than being capable of reduction to simplistic models, disability is a more fluid concept that depends on impairment and social barriers which are very much context specific.
Sources of data
Three sources of data have been drawn on to answer the research questions outlined above:
• my personal experiential knowledge of disability
• primary source historical documentary data
• Empirical data collected in two case studies of contemporary organisations whose mission was to find employment opportunities for disabled people.
Thesis outline
Chapter 1
As one central feature of this thesis is the relationship between disabled people and work, the first part of this chapter reviews the different models which define disability, their genesis and how they have been embedded in research on disability. The second part examines different approaches to achieving equal opportunities for minority groups as illustrated in the work of Jewson and Mason (1986) in order to determine whether the same approaches are applicable to disabled people.
Chapter 2
Drawing and adapting on a Gramscian framework developed to explain gendered patriarchal power relations in organisations (Danieli 1994), the chapter discusses why and how the work of Antonio Gramsci is relevant and can be used in disability research. His theories of ideology, good sense, common sense, hegemony, and the role of intellectuals are discussed and how these concepts are applied. The chapter continues by considering the concepts of ‘assimilation’ and ‘integration’, when used in parallel with Jewson and Mason’s analysis of equality approaches discussed in the previous chapter, can be used to inform approaches of how to improve employment opportunities for disabled people. Finally a review of the Euske and Euske (1991) model of different organisational rationalities is provided which will help explain the operational realities of the two case study organisations.
Chapter 3
This chapter discusses the methodology adopted in conducting the research for this thesis. It will raise some problems in relation to the methodological advice offered by traditional methodology texts in relation to disabled researchers and argues that such advice assumes that researchers are non-disabled. It then moves on to problematise the methodological prescriptions emanating from disability researchers who advocate emancipatory research as an alternative to traditional approaches to researching disability.
Chapters 4 and 5
These chapters address the question of whether the social model of disability represents a new understanding. Social model logic implies that the traditional historical understandings of medical discourse on disability would ensure that disabled people uncritically accepted that disability was solely caused by impairment. In order to determine whether these claims were valid an archive search was conducted from a variety of sources in organisations that were engaged in the employment of disabled people. Henshaw's Society of the Blind in Salford made their records available, together with the TUC and Transport and General Workers Union records from the University of Warwick’s Modern Records Centre. A third source was found in the records of the first union of disabled people held at the Working Classmovement library in Salford. Additionally, the newspaper archive held in the British Library provided accounts which detailed the way aspects of disability were reported and understood across the wider population. These records show how, historically, organised resistance and political activism by disabled people challenged dominant understandings and influenced legislation to improve working conditions for many disabled people by changing social attitudes. The records from 1927 of two organizations (Thermega and Henshaw's) which attempted to find employment for disabled people, show that the medical model was not dominant and that the two models are not mutually exclusive but rather that socio and medical models operated in tandem.
Chapters 6, 7 and 8
These examine two contemporary organisations to discover whether distinct models of disability are in evidence in everyday operations. The first is called the ‘Social Model Organisation’ (SMO) and it emerged from an equal opportunities initiative by an ‘English Local Authority (ELA). The second organisation is a pilot for the government’s NDDP programme. Both organisations are briefly discussed below.
The social model organisation (SMO)
SMO was originally created inside the equal opportunities department of ELA, and then later given independence and began trading as a charity. Through the political support offered by ELA, SMO was provided with accessible leasehold premises in a former local authority property and two contracts of three years’ duration for the training of disabled people in the local authority’s care. One contract was to improve the potential for independent living and applied to 20 people all of whom had been medically assessed as having learning difficulties. The second contract provided training for up to 15 disabled people in order to improve their employment potential and also provided them with some work experience in the organisation’s own retail charity shop. SMO was provided with staff, premises, contracts and local political support which enabled the company to commence trading. SMO also won a third one-year contract from the local Training and Enterprise Council (TEC) for training in basic literacy and numeracy for 8 young adults who were defined as having ‘behavioural problems’ which had resulted in their exclusion from school. Whether this third contract lay within the organization’s mission of training disabled people became a contentious issue which the organisation never satisfactorily resolved.
The mission statement of SMO decreed that a majority on the board of directors was made up of disabled people and the company was to operate under the principles of the social model of disability. SMO employed 24 people of whom 7 were disabled - slightly more than 30% of the total workforce and thus significantly higher than the 3% of most organisations in the UK (Hodge 1999). Not only is this disabled employment rate higher than that of many traditional employers but also the positions occupied by disabled employees in these latter companies are generally restricted to low level jobs (Brandon 1988, Drake 1994; Peterson 1995;Visier 1998). In contrast, disabled employees in SMO held positions that ranged from building maintenance work up to and including the position of CEO. The organisation was run at an operational level by a senior Management Team (SMT) which consisted of three people: the CEO, the senior finance manager and the senior operations manager. The SMT reported directly to the board whilst also taking responsibility for the day-to-day running of the organisation. Each SMT member was responsible for several line managers, who in turn were responsible for a number of operational staff. The organisational structure and individual job descriptions adopted by SMO were those originally created when the organisation was formed in ELA.
New Deal for Disabled People (NDDP)
NDDP originated as a pilot project the primary aim of which was to enable a cost benefit analysis to be carried out prior to the initiative being rolled out as a national programme (Walker 2000). The ‘pilots’ were chosen through a national competition which invited applications from any appropriate organisation (Drake 2000). From the entrants, twelve areas in the UK were successful and were awarded funding to run the pilot schemes (DFEE 1998). The organisation that participated in this research was formed as a partnership between the regional employment service, the local authority and local social services department. In addition, a national charity for disabled people which specializes in employment issues provided part time assistance in finding work opportunities for disabled people. Training providers were contracted in from the private sector and the local authority agreed to provide 200 placements in its offices and works for long term unemployed disabled people. A placement was defined as a period of time spent in a working environment where the disabled person could gain confidence and increase his/her self esteem in preparation for paid employment. Low self esteem had been identified as a significant barrier to disabled people entering the workforce (Dwight 1998). As part of the competition process, the organisation was required to specify the location and access of its proposed offices together with staff numbers and experience in employment issues. In terms of staff employed, NDDP was smaller than SMO and had a different organizational structure. In total the organisation employed 13 full-time advisors and one part-time.[1]
The NDDP pilot was an arm of the employment service and reported directly to the regional employment service. Offices of the pilot scheme were located outside the traditional Job Centre, although the influence of the employment service remained a factor because the systems it used were, in most cases, based on employment service models.
The structure of the organisation consisted of one senior office manager, nine personal advisors and three administrative staff. The office manager was responsible for the operation and monitoring of the project and reported directly to the regional employment service. Personal advisors were people who interviewed disabled clients and assisted them in developing a strategy for finding employment. Such strategies usually entailed taking part in training packages delivered by external providers. The clerical/administrative assistants provided general support services and acted as the first interface with clients, dealing with enquiries, making client bookings, compiling statistical data and searching current job vacancies to provide a resource which could be drawn on by advisors and clients. Of the total workforce, three were disabled people (or chose to define themselves as disabled) and all three were employed as administrative/clerical assistants. They made up approximately 25% of the workforce and occupied the lowest grades in the organisation[2]. All three disabled employees had been former clients of NDDP and so had found their jobs through the project. The office manager and five of the personal advisors were recruited from the employment service. Of the remaining personal advisors, two came from the local social services department and one from a local disability-into-business charity. One part time personal advisor was employed by a national charity charged with finding employment opportunities for disabled people, largely through the government’s supported employment programme.
The choice of these organisations was based on the need to determine how different organisations applied models of disability. NDDP might be expected to be working to a medical model whereas SMO claimed to work to a social model. The aim was to see whether each organisation was working exclusively to one model and how the social model was implemented in practice. In SMO, it was possible to conduct participant observation and semi-structured interviews as an insider within the role of treasurer on the Board. In NDDP non-participant observation and semi-structured interviews were used. The experiences of using such methods as a blind researcher and the dilemmas these raised in conducting emancipatory participatory research are discussed more fully in Chapter 3.
These three chapters analyse the findings from the empirical research in both NDDP and SMO in terms of how each organisation approached their work, the models of disability which underpinned this and their internal employment practices.
Chapter 9
This chapter will offer some conclusions arguing that even when organisations claim to be operating according to an exclusively social model of disability they cannot escape the medical model. Consequently, arguments that maintain that disabled people’s experiential knowledge leads to a social model of disability and that such a model should be adopted in order to facilitate the inclusion of more disabled people cannot be sustained.
Chapter 10
This chapter provides a reflective discussion of conducting the research for this thesis and raises some methodological implications in relation to changing the material and social relations of knowledge production for disabled researchers.
Chapter 1
Understanding Disability and Approaches to Equality
As indicated in the introduction, recent writings on disability have suggested that it has been understood in two mutually exclusive ways which have been termed the medical and the social models of disability. The debates that have ensued have been most visible in the UK and the following discussion therefore concentrates on those debates. It should be noted however that whilst it has been argued that two distinct formulations of the causes of disability exist, the medical model has in fact been defined by writers who advocate a social model of disability. This necessitates an understanding of the historical genesis of the social model as it is presently understood. It is also important to recognise that there is no single definition of disability. Different countries define disability differently. For example, in the USA some view disability as a functional requirement of ‘the disability business’ (Albrecht 1992) whereas in the UK some argue that disability is largely regarded as a personal tragedy caused by impairment (Oliver 1990).
The first part of this chapter reviews the different models of the causes of disability, their genesis, and how they have been embedded in research on disability. The second part examines different approaches to achieving equal opportunities for minority groups as illustrated in the work of Jewson and Mason (1986) in order to determine whether the same approaches are applicable to disabled people.
Models of disability
In the mid 1960s arguably the most influential challenge to the dominant understanding of disability came from disabled people living in a Cheshire Home. Cheshire Homes are residential institutions which “care” for disabled people who are deemed unable to care for themselves. In one of these homes, the residents rejected advice from medical experts Miller and Gwynne from the Tavistock Institute, who were making decisions for these disabled people regarding the running of their lives (Miller & Gwynne 1972). Briefly, the disabled residents were seeking more active participation in the running and decision- making processes which affected their lives despite expert medical advice which suggested that decision-making should be in the hands of non-disabled professional carers as the most appropriate means of continued support. This led to the questioning of expert medical advice by many disabled residents and the formation of a resistance movement calling itself the Union of the Physically Impaired against Segregation (UPIAS). UPIAS was created as an organization run and controlled by disabled people to promote independent living (Finkelstein 1991; Oliver 1990).
Later to become a member of UPIAS, Hunt (1966) wrote a paper which details the personal experience of disability and laid the foundations for a social model of disability. Hunt argued that disabled people were perceived as ‘unfortunate, useless, different, oppressed and sick’. He suggested this was because people with impairments were perceived by the able bodied to be incapable of benefiting from modern society in terms of material goods and social inclusion. This was due, Hunt argued, to the central and key role that work played in Western culture. Disabled people were viewed as ‘useless’ because they were considered to be incapable of contributing to economic prosperity. This in turn, enabled a non-disabled majority to stigmatise disabled people as a minority group. Hunt argued that disabled people represented everything that the able bodied feared: ‘tragic loss, dark, and the unknown’ (155).
Hunt’s (1966) analysis can be seen as the catalyst for the formation of a disability movement which challenged traditional understandings of the causes of disability by using phenomenological accounts. For example, in his book Stigma, Hunt (1966) drew on the experiences of several disabled people thus challenging traditional methods of research that constructed disabled people as ‘objects’. Hunt promoted the idea of disabled people as knowing subjects, capable of interpreting and determining the causes of their disability.
In a similar vein, Alan Sutherland (1981) advanced the concept of disability as socially constructed through an analysis of the exclusion of the disabled from working life; the problems of access, and the role of stereotyping in the social scripting of a ‘disabled role’. Following in this tradition of personal narrative, Jenny Morris (1989, 1991) related the effects of spinal injury for disabled women. These authors confronted the conventional view of disabled people in a ‘sick role’ (Parsons, 1951) where the consequences of impairment as an individual attribute were regarded as the cause of disability. Parsons further notes that disability constructed in this way is a condition that has come to be regarded as abnormal in westernized industrial societies.
Against a wider background, the disability movement could be regarded as an equality seeking movement following in the footsteps of the earlier feminist and black movements (Bourne & Whitmore 1996; Shakespeare 1994) and the civil rights movement in the USA (Dejong 1983; Oliver & Zarb 1989, 231). Hence it can be argued that the disability movement paralleled feminist and anti-racist movements in a fight against the ideological use of biological determinism and drew on experiential knowledge to challenge dominant theories of gender and ethnic differences.
Although the impetus for the disability movement came from personal experience, the origins of a theory to explain the challenge to dominant formulations of disability came from another disabled person and academic, Vic Finkelstein. Finkelstein (1980) reflected on the causes of disability and argued that they could be linked historically to the move towards industrialisation in Western society. In developing his thesis, Finkelstein considered history in three distinct phases. The first he classified as a feudal period which occurred prior to European industrialisation. Here, economic activity within society was to a large extent agrarian and cottage based; a means of production, he argued, which did not exclude impaired people. In phase two, industrialisation occurred and resulted in impaired individuals being excluded from work. In most cases, this was because they could not work at the rate demanded by the new industrial systems. This led to the marginalization of people with impairments as they were excluded from social and economic activity. Many who fell outside the efficiency demands required by the new industrial systems were placed in residential institutions. The third stage, Finkelstein argued, would see the emancipation of people with impairments from these oppressive systems by the use of technology and the assistance of helpers and allies.
Finkelstein’s analysis has been criticised for its over simplistic consideration of the means of production and its excessive optimism about the ability of technology and unspecified ‘allies’ to liberate disabled people (Barnes 1990, 1997; Oliver 1990; Meekosha 1998; Roulstone 1998). The critique most relevant to this research was developed by Roulstone who considered the relationship between disabled people, technology, and work. He argued that the primary use of new technology, rather than offering an unproblematic means of emancipation may, paradoxically, individualise disabled people. He highlights terms including ‘augmentative’ or ‘compensatory’ technology, which he suggests can have the effect of constructing the ‘language’ of new technologies, placing the individual’s impaired body as the focus of employment problems. Hence for Roulstone, the technological paradox enables individual disabled people to benefit from technology although this may be at the cost of accepting that technological remedies are based on correcting individual deficits and thus reinforcing the traditional understanding that disability is caused by an individual’s impairment.
Although Finkelstein’s analysis has been criticized, his work has formed the basis of perhaps the most influential writings on disability to date in the UK. Oliver (1990) provided a more comprehensive analysis of the implications for disabled people of the transition to capitalism in Western society. He produced a materialist analysis which provided a focus on the social construction of disability as ideological. For Oliver, economic progress brought new and changing perceptions of society and problems of maintaining order which had epistemic effects that altered the perception of impairment. Oliver maintained that an important consequence of industrialisation for disabled people was the institutionalisation of social care and control. This, together with the increasing tendency under an emergent capitalist system to individualize and search for medical/psychological solutions to `cure’ social problems (see for example, Rose 1985) led to an increase in medical intervention for individuals with impairments.
Oliver considered this ‘personal tragedy theory’ of disability to be a form of ideological hegemony as it has now become incorporated into everyday belief systems and assumptions which are considered to be common sense. The following chapter will consider in detail the concepts of ideology, hegemony and common sense used by Oliver. However, in this chapter the implications of Oliver’s personal tragedy theory and the ways in which it underpins the two opposing models of disability will be considered.
The essence of the two model dichotomy is founded in an historical understanding of impairment as the root cause of disability; a view that is encapsulated by the medical model. Many advocates of the social model of disability which contends that disability is caused by oppressive disabling societies (Swain et al 1993) provide evidence to support their claims through a critical analysis of the mechanisms that have been used by government and other institutions (notably medicine and psychology) to determine the nature of disability. Although Oliver was influential in providing an alternative framework to the dominant ideology of disability as a ‘personal tragedy’ the actual writing of a social model of disability was provided by other disabled authors.
The original definition of a social model of disability was contained within the UPIAS document: The Fundamental Principles of Disability (UPIAS 1976). Within this text and many early analyses of ‘disability’ (Brisenden 1986; Finkelstein 1980, 1981; Hunt 1966; Oliver and Zarb 1989), emphasis was placed on the relationship between physically impaired people and their social environment. Two factors were seen to be important in defining disability: the built environment – which was seen to be predominantly built by and for non-disabled people - and the attitudes of non-disabled people towards others with impairments. Taken together these two factors, it was argued, caused disability (Barnes 1990; Finkelstein 1980; Oliver 1990). Whilst this was initially based on the experiences of physically impaired people, the model was refined to accommodate all forms of impairment.
The inclusion of all forms of impairment gave additional political force to a challenge to the historical oppression of disabled people, by using the concept of a mass political movement (Campbell and Oliver 1996). Throughout this thesis, the definition of the social model of disability will be taken from this more inclusive later model (Swain et al, 1993). Within this model impairment is defined as ‘the lack of part or all of a limb, organ or mechanism of the body’ (Finkelstein and French 1993, 28), and disability is defined as:
The loss or limitation of opportunities that prevents people who have impairments from taking part in the normal life of the community on an equal level with others due to physical and social barriers. (Finkelstein & French 1993, 25)
This social model aims to remove any causal association between impairment and disability. In other words impairment itself is not seen to cause disability. However, one difficulty which arises in attempting to break the link between impairment and disability occurs because social model theorists have generally failed to theorise the nature of impairment. As a result this task has generally been left to medical experts; arguably, this is not a politically astute position (Hughes and Paterson 1997). Hence the model is weighted towards an analysis of disability only, which is largely accounted for by environmental and social attitudes that discriminate against impaired people.
However, whilst the applicability of the definition may more accurately reflect the experiences of the founding members of UPIAS, attempts to apply the model universally to all forms of impairment have been acknowledged by some in the disability movement to be problematic. In the cases of learning impairment (Chapell, 1996), visual impairments (French 1993), and hearing impairment (Corker 1996) there is an acknowledgement that such impairments do, to varying degrees, cause social disadvantages that may be difficult to overcome simply by altering environments and disabling attitudes. It is difficult to see how the social model could help a blind person, for instance, who wishes to participate in a visual art exhibition, unless visual art itself is defined as a discriminatory form of expression. The social model remains silent about the stubborn fact that the blind person is disabled by their inability to participate fully because of an individual lack of visual ability. It can be argued with some force that no degree of environmental or attitudinal change would allow the full subjective experience of visual arts to be accessed by a blind person. Although a co-author of the social model, Sally French (1993, 22) acknowledges this inherent problem but nonetheless she supports a homogenised concept of disability, arguing that the political strength of the model will be weakened if divisions between impairment specific groups are allowed to surface.
In summary, the medical model of disability suggests that disability is rooted in the individual impaired body. In order to remove the disability it is necessary to repair the impairment. In contrast, the social model suggests that there is no necessary link between impairment and disability and that there is no logical reason why someone who has an impairment should experience it as disabling. Disability is a social construction generated by the social environment and social attitudes of people who have no experiential knowledge of impairments. It follows from this perspective that disability can be removed if changes to the environment and social attitudes can be achieved.
The following section will review the ways in which both models achieved historical legitimacy alongside a burgeoning welfare state as governments found it increasingly important to determine the size of the disabled population in order to enable the budgeting and delivery of services to those disabled people in need of support.
The quantification of disability: reinforcing a medical model
For the purposes of this analysis, the discussion will be restricted to the post Second World War period. This restriction has been made because this time period became one in which the quantification and measurement of the disabled population received more government attention than ever before. The after effects of the Second World War forged a relationship between the impaired body and work. Two pieces of legislation called for quantification and measurement systems to ensure the target population of the legislation was clearly defined.
The 1944 Disabled Persons Employment Act (DPEA) introduced, to a limited degree, the necessity for a quantification of impairment (Ministry of Labour 1946c). Additionally, the 1948 National Assistance Act (NAA) obliged local authorities to compile registers of all disabled people in their communities, to provide employment (where appropriate) and recreational services. However, these Acts operated under separate bureaucratic domains (the Departments of Employment and Health respectively) with little communication or sharing of information between the two departments (HMSO, 1973).
It was not until the 1970s that a uniform approach to the classification and quantification of disabled people occurred. This was partly a result of the Local Authority Social Services Act 1970. This Act created integrated social services departments which were instructed under the Chronically Sick and Disabled Persons Act 1970 to monitor and provide welfare services for severely impaired people in their communities. This duty provided the impetus for the first of two official surveys of disabled people in the UK (Bury 1996; Harris et al 1971a, 1971b) conducted by the Office of Population Census and Statistics (OPCS). It was the quantification methods used in the OPCS surveys which drew much criticism from a number of disabled people who argued that quantification methods reinforced the medical, personal tragedy theory of disability (Abberley 1991; 1992; Barnes 1991; Oliver 1990; Shakespeare 1994). The following review considers both OPCS surveys and details how the authors concluded that this method represented a historical continuity and a reiteration of disability as an individual medical deficit.
The first OPCS survey
The first OPCS survey considered a limited definition of impairment and its effect on handicap (Harris et al 1971a, 1971b). Harris's work primarily investigated people with physical impairment - lacking or limitation of limb function - and how such impairment affected interactions in the social world. The Harris survey was underpinned by an ontological understanding of impairment as the cause of functional restriction of the body which consequentially led to the social disadvantage of handicap. It categorised impaired people into one of four groups depending on the level of handicap they experienced. Adoption of this simplistic device, however, excluded people with sensory impairments or mental health problems (Abberley 1991, 1992; Bury 1996).
However, a need for linguistic clarity and accuracy became apparent, as there was confusion about the terms used in the Harris survey where concepts were often employed interchangeably, for example, impairment and handicap (Bury, 1996). In fact, impairment is located in the corporeal body whereas handicap was defined as the social disadvantage faced by impaired people. So, if a person is referred to as ‘handicapped’ rather than impaired, then the social disadvantage becomes a personal attribute in addition to impairment. Hence the problem becomes a personal medical condition in which sight is lost of the social cause of handicap.
Subsequent research (Topliss, 1979) also found the use of terms problematic. For Topliss, ‘disability’ was often applied inaccurately especially when considered against other terms such as ‘disease’ which is more certain in meaning. Disease may have social or environmental causes but inevitably symptoms manifest themselves within the body. In part, as an attempt to end these terminological ambiguities, the World Health Organisation (WHO 1980) developed a health focused taxonomy (Bury 1987): the International Classification of Impairments, Disability and Handicap (ICIDH).
The ICIDH defined disability and its correlates into a three stage model; it was this model which represented an exemplar for the medical model of disability for many disabled people (Bury 1996; Pfeiffer 1998; Shakespeare 1994). As illustrated above, the Harris survey utilised a two-stage model incorporating physical impairment and handicap (Harris et al 1971a, 1971b). Perhaps the most significant feature of the ICIDH was to expand the concept into a three stage model of disability. These stages were impairment, disability and handicap, and were defined as:
Impairment: Any loss or abnormality of psychological, physiological, or anatomical structure or function.
Disability: Any restriction or lack (resulting from impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.
Handicap: A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents fulfillment of a role that is normal, depending on age, sex, social or cultural factors.
(WHO 1980 cited in Shakespeare 1994, 112-14)
Within this three-stage relationship, impairment is rooted in the corporeal body; disability is a limitation in activity (such as an inability to walk) caused by the impairment; and handicap defines social or cultural disadvantage caused by either impairment or disability. For some, principally those committed to a social constructionist account of disability, fixing all three elements in relation to impairment reinforced a dominant medical model which they felt had historically oppressed disabled people (Campbell & Oliver 1996; Finkelstein 1993; Oliver 1990).
In defining impairment the ICIDH appeared to take a rather simplistic approach, categorising every ‘normal’ human condition and then assuming its opposite was impairment (Shakespeare 1994). To illustrate this, some of the conditions that were defined as impairments from the ICIDH will be considered. Every impairment was allocated into a category and given a reference number which was denoted below in brackets. For example, blindness was categorised as a subdivision of visual impairment that covers many degrees of visual acuity. The comprehensive nature of definitions would, arguably, suggest that very few people would escape some classification as impaired. For example ICIDH categories include: short stature (25.0); baldness, (82.4); false teeth (68.0); pregnancy and menstruation (99.0), with homosexuality considered a psychological impairment (25.2). So, in parallel with increased medical knowledge, categories of impairment were generated in opposition to a medically determined ‘norm’ (Bury 1996; Patrick and Peach 1989).
In effect, the ICIDH provided a comprehensive list of health related conditions, which informed a second survey by OPCS. The purpose of the second OPCS survey was to determine the size of the disabled population and the range and severity of the impaired population, knowledge which could assist government to estimate and allocate resources to those determined as deserving of support (Bury 1996). It was the second OPS survey discussed below which drew the greatest criticism from some in the disability movement (Abberley 1991, 1992; Barnes 1991; Campbell and Oliver 1996; Oliver 1990; Shakespeare 1994). These authors have offered a comprehensive critique of the second OPCS survey which will not be repeated here. However, a sample critique will be provided to illustrate the general nature of the criticisms and how these were used to demonstrate that the survey represented a traditional individual medical conception of the causes of disability.
The Second OPCS Survey
The ICIDH categorisation was used as a basis of a second OPCS survey (Martin et al 1988) which endeavored to provide a more comprehensive investigation of the incidence of disability and attempted to measure ‘degrees’ of impairment and their subsequent effect on levels of disability and handicap. The survey adopted a methodology based on asking an individual to compare themselves with a person of similar demographic background without impairment (Abberley 1991, 1992). The underlying assumption of this second survey was that the concept of ‘normal’ was unproblematic and that people with impairments could use this as a baseline by which to measure the degree to which they were ‘disabled’ by their impairment.
Although this measure may have been less problematic if a person had recently acquired their impairment, if the person had had the impairment from birth or early childhood their ability to apply such a technique would be extremely difficult, if not impossible. For example, people blind and deaf, some from birth, were expected to make an assumption of what people who could see and hear normally experienced. Some examples from the survey serve to illustrate this point.
Question 20 required a researcher to ask a hearing impaired person: ‘Do you have great difficulty following a conversation if there is background noise, for example a TV, radio or children playing (wearing your hearing aid)?’ This may appear an unproblematic question but it assumes the hearing impaired respondent can appreciate the concept of varying levels of sound. There is no determination of the volume of the background noise level, or the conversation and what is meant by ‘great difficulty’. Similarly, in the same section, to determine the effects of hearing impairment disabled people were asked by researchers if they could, ‘follow TV programmes at a volume which others find acceptable’. Again this question assumes the disabled person has been told in the past that sound levels were either acceptable or unacceptable, and the question does not take into consideration whether the ‘other’ people had any degree of hearing impairment. This is relevant, because if two hearing impaired people were watching television at an acceptable volume for them it could be totally unacceptable for others without hearing impairments. Other questions asked people to determine stranger comprehension, that is to determine how they understood the meanings if strangers entered into conversation with them. The survey demanded a response in the form of accepting a statement ranging between ‘not difficult/quite difficult/very difficult/impossible’ (Martin et al, 1988). This once again assumes respondents have the same basic understanding of ‘normality’ as the researcher. What was absent from this particular question was any notion of whether the disabled person understood the question and the inherent contradiction that if a person had great difficulty in stranger comprehension, how could they understand and answer a question from a stranger/researcher?
Problems such as these with the second OPCS survey drew criticism which supported the Oliver’s earlier analysis, namely that the dominant understanding of disability was rooted in an individualistic medical model of disability. This was evident throughout the OPCS survey as questions related impairment directly to the inability to perform ‘normally’ without regard to the social construction of disability (Abberley 1991; 1992; Barnes 1991; Oliver 1990; Shakespeare 1994).
The second OPCS survey attempted but failed to prove a simple link between impairment and disability because it did not consider that two people with the same impairment can have different levels of disability. For example, if two blind people are compared, one may have the confidence and ability to engage freely in society whereas the other may, for reasons of low self confidence and fear, find difficulty in leaving the home (Dodds 1993). In this example, the impairment is identical but the experience of disability is different. This point again raises a fundamental inherent problem with a social model analysis, which can be summarised as the model’s neglect of any consideration of impairment (Hughes 1999, 2000, 2002; Hughes & Paterson 1997; Paterson & Hughes 1999).
It is not my intention here to suggest disability is a personal tragedy (Oliver, 1990) to be overcome purely by individual determination, but rather that any relationship between impairment and disability is complex in nature and contingent on many factors including age (Bury, 1996b; Martin et al 1988), culture (Barnes, 1997; Lupton, 1994; Meekosha, 1998), economics (Bell, 1993; Bowitz, 1997; Burchardt, 2000), environment (Gleeson 1999; Imrie 1996; Skelton & Valentine 1999), attitudes (Swain et al 1993) and politics (Snower 1995; Toynbee 2001).
Despite the multiplicity of factors that can combine to create disability, the second OPCS survey fixed an inert relationship between impairment and disability (Abberley 1992). Although, as has been shown, the relationship between impairment and disability was always problematic, the survey claimed a quantifiable relationship between impairment and disability primarily for the purpose of the administrative allocation of resources. This is evident since the second OPCS survey increased the number of scales of disability from 4 to 10 attempting a greater degree of classification in levels of disability than the first survey (Bury 1996). In effect, the survey quantified ‘disability’ in relation to impairment rather than considering any political, economic, social or environmental factors. One question this research asks is, does the social model of disability represent a new understanding? It could be argued that the criticisms of the OPCS surveys discussed above indicate a drive by contemporary disability activists to challenge dominant understandings. However, the relationship between disabled activists and authoritarian attempts to quantify and categorise impairments is not new. In 1920 disabled activists discounted the categorisation of blind people between those with a single impairment and those with additional mental conditions as 'the prattle of charity mongers', which deflected the argument away from a political struggle for economic emancipation to the necessity of charity and dependence (Lawley 1920). This historical aspect of disability activism is considered in detail in chapter 4.
This section has illustrated the claims of social model advocates that a two model oppositional discourse can be used to contrast traditional intellectual medical definitions of disability with an organic intellectual emancipatory alternative. More recently, calls by social model advocates to take account of the environmental and attitudinal causes of disability have been incorporated into a revised version of the ICIDH. This revision is discussed below with a consideration of some of the implications for the disability movement.
ICIDH-2
The first point which should be noted about ICIDH-2, is that it is not restricted in its application solely to people with impairments:
There is a widely held misunderstanding that ICIDH-2 is only about people with disabilities; in fact, it is about all people... In other words, ICIDH-2 has universal application. (WHO 2001, 5)
In comparison with the original ICIDH discussed earlier, ICIDH-2 provides a more complex analysis of disability and is not easily reducible to the simple three stage model of its predecessor. Although impairment remains a medically defined condition of the body measured against a predetermined ‘norm’, disability takes on a more nebulous meaning and can be used as a generic descriptor capable of defining any impairment, any lack of functioning or activity limitation caused by impairment. For example, an inability to walk as a result of spinal impairment, and/or a lack of participation caused by either restrictions imposed by impairment or environmental barriers external to the body or a combination of both (WHO 2001, appendix 1). In other words, ‘disability’ has no fixed definition and can be used to describe impairment, the lack of activity in the body caused by impairment or lack of participation experienced by any person due to environmental or attitudinal barriers.
ICIDH-2 introduces two replacement terms: ‘activity’ and ‘participation’. ‘Activity’ replaces ‘disability’, and ‘participation’ replaces ‘handicap’ (WHO 2001, appendix 1) and ‘participation’ becomes a more comprehensive concept. In short, ICIDH-2 provides a taxonomic device which can be used to combine structural (impairment) and functional (activity) operations of the body along with environmental and attitudinal factors which join to either disable or enable (Bickenbach et al. 1999).
It may be of assistance here to explore some of the implications of the application of ICIDH-2 rather than attempting to construct what would be a complex model. Similar to the original ICIDH, impairment can be the malfunction of eyes or legs. The ‘activity’ or ‘participatory’ restriction is the consequential loss of the ability to see or walk. Participation’ can be restricted by either bodily activity limitations or environmental factors external to the body, or a combination of both (WHO 2001, Appendix 6). Environmental factors can be both ‘facilitators’ and ‘barriers’ that either aid or disable the individual. For example, tactile paving at road crossings can be classified as a ‘facilitator’ for a blind person whilst simultaneously becoming a ‘barrier’ to a wheel chair user (WHO 2001, 129).
The removal of the impaired body from consideration of some aspects of participation allows ICIDH-2 to make the claims of universality noted above. This is evident as a sighted person could be regarded as disabled at night during a power failure due to the inability to see and a blind person can also be regarded as disabled through an inability to see printed text. Similarly the attitudes of others in disabling an individual with or without impairments equally constitute disability. For example, a non-impaired health worker who comes into contact with HIV positive patients can be classified as disabled if subjected to disabling attitudes of other members of society concerned about the implications of contact with HIV (WHO 2001, Appendix 4).
It would appear that the removal of the impaired body as the causal factor of disability acknowledges many of the criticisms made by some disabled academics and social model advocates who argue that attitudinal (Swain et al 1993) and environmental barriers (Gleeson 1999; Imrie 1996; Skelton and Valentine 1999) are the primary causes of disability. ICIDH-2 acknowledges both these factors can be satisfactorily used to explain the phenomenon of disability, but it also goes further.
An example was provided earlier of one limitation in the social model of disability: where the model could not be used to provide a definition of the disadvantage experienced by a blind person wishing to engage in a visual arts event. Using ICIDH-2, the inequality of participation can be termed ‘disability’. Equally, if the arts event was located in a building fronted by a flight of stairs a wheelchair user could equally be defined as ‘disabled’ by the construction of a disabling environment. Hence it can be argued that ICIDH-2 reflects multiple models of disability: a medical model where impairment can cause a lack of activity and consequential loss of participation, and a socio- medical model where impairment can cause a lack of activity through environmental barriers to participation. Also available here is support for a social model where impairment does not contribute to loss of participation and for a more expansive model where any member of society, with or without impairment, can be disabled by environments and the attitudes of others. So, ICIHD-2 attempts to become an inclusive representation of disability and moves away from a two polar opposite model account.
One question this research will attempt to address is whether the two model dichotomy claimed by many in the disability movement represents continuity in the historical understanding of disability, or, as exemplified by the most recent ICIDH, whether an historical understanding always recognised disability as a complex relationship between medicine, the impaired body and society.
So far this chapter has concentrated on how disability can be understood; the problems of defining disability, and the implications of different formulations for the achievement of equality and social inclusion for disabled people. It is claimed that the social model provides the potential to remove discrimination against disabled people and achieve equality for them. Whilst at a conceptual and political level this may be a desirable argument it is also important to examine whether and how equality can be achieved in practice. The empirical research conducted for this thesis is concerned with discovering how actual organisations, charged with enabling disabled people to engage in employment, operate and whether they conduct their work using a medical or social model of disability. However, the achievement of employment opportunities for other historically disadvantaged groups - such as women and minority ethnic groups - has a long history and some of the frameworks may prove helpful in providing a way forward for disabled people. The following section considers one model which has been proposed in the past as capable of affording an understanding of how other minority groups are provided with equality of opportunity in organisations.
Equality for minority groups in organisations
Approaches to the achievement of equality in organisations have been analysed and reduced to two principal approaches. Jewson and Mason (1986) make a distinction between liberal and radical styles on the basis of means of implementation; the potential for achieving success, and how organisational members perceive the measures. Radical and liberal approaches differ on each aspect.
The liberal approach rests on the assumption that if all persons are facilitated to enable free and equal access to compete for employment then equality of opportunity exists. Policies and procedures are thus required which contain no bias and are available to all. The method attempts to eliminate subjective bias, as far as possible, through the application of standardized processes although special treatment can be adopted. For example, individuals can be enabled and encouraged to compete, so long as the decision-making process is seen to be uncontaminated by personal influence. However, this liberal approach has difficulty in embracing the structural sources of social capacities and skills and, hence, the social sources of inequality (Jewson & Mason 1986, 314).
In contrast, the radical approach recognizes that there are structural inequalities and disadvantages which cannot be overcome by merely introducing unbiased policies and procedures. What is required to achieve equality is direct intervention to workplace practices. Equality can only be seen to have been achieved when the representation of previously disadvantaged groups amongst the workforce is proportional to their numbers in society. Consequently the radical approach is driven by the outcome of policies rather than the existence of organisational equality rules and policies. In other words, the emphasis is placed on the delivery of rewards instead of the fairness of procedures (Jewson & Mason 1986, 315).
Those who support a radical approach to equality argue that if minorities are not demonstrably represented and distributed then it follows that there is, ipso facto, discrimination irrespective of how fair any equality policies may seem to be. Radicals propose that ‘ability’ cannot be regarded as a neutral term but instead is defined in relation to the skills and behaviour of the dominant class or elite. So, any liberalisation of policies and procedures will simply result in the reinforcement of the position of that class or elite and hence perpetuate their social advantage. Thus, the emphasis increasingly becomes to recognise the political imperative in decision-making processes and then to challenge dominant ideologies by taking radical steps such as a policy of positive discrimination. Additionally, however, there is an emphasis that the critical evaluation of, for example, prescribed educational, technical, and experiential credentials is always necessary.
Research into organisations has concluded that in practice confusion over the two approaches is common (Jewson & Mason 1986). In terms of ethnic minority and gender equality policies most organisations recognize and (to varying degrees) operate more closely to a liberal model of equal opportunity (Cockburn 1991). Although often expressing commitment to a redistributive resolution, organisations and their legislature feel more at ease championing liberal principles and so design and implement routines which underscore that fact (Breugel & Kean 1995; Cockburn 1991; Jewson & Mason 1986; Yates 1994). These orthodox equality policies have been criticised as simply a mask for managerial commitment (Collinson et al 1990; Jenkins 1986) which often result in weak remedial solutions (Liff 1989; Webb & Liff 1988).
In relation to disability, on the other hand, little research has been conducted concerning the application of the Jewson and Mason model and hence any assessment of its validity is problematic. The limited analysis available shows the dichotomous concept becomes blurred in relation to disability and equality of opportunity (Yates 1994). However, it should be recognised that the implementation of the 1944 Disabled Persons Employment Act which included an obligation on employers to engage a quota of disabled workers (MOL 1946b) has prompted an accusation in some quarters that ‘people are being appointed because of their disability rather than on merit’ (Coussey & Jackson 1991, my emphasis).
One of the aims of this thesis is to take a wider analytical view of equal opportunities for disabled people and therefore elements of the Jewson and Mason framework will be used in the empirical chapters because of their potential to highlight some of the inconsistencies of the traditional approach to equal opportunity policies for disabled employees. However, the Jewson and Mason model is predicated on equality in respect to gender and ethnicity where it can be more easily argued that the barriers to equality stem from the discriminatory attitudes of a ruling elite. In the case of disability, however, it can be argued that impairment, in some cases, can affect an individual’s ability to perform certain jobs. To give an extreme example, it would be difficult to argue that a blind person could be capable of conducting heart surgery as effectively as a sighted peer. In such cases it would appear that the Jewson and Mason model cannot offer a template for equality in all organisations. For this reason, in the following chapter this model will be complemented by a consideration of how such ‘differences’ can be accommodated for. The Jewson and Mason model is based on an assimilation concept: that by overcoming any differences in, say, skin colour or gender, individuals in minority groups can be assimilated into the dominant culture. In the case of disabled people, an integration policy may be necessary in addition to the Jewson and Mason model if equality is to be offered to many disabled people.
When considering equality for disabled people together with the two models of disability discussed earlier it might be expected that an organisation operating to the social model of disability would adopt a radical approach. This would entail ignoring any structural sources of inequality such as the poor educational achievements of disabled job applicants (Barnes 1991) and supporting positive discrimination policies. An analysis of the empirical data will examine if such policies are employed by the participating organisations, and, more pertinently, if their adoption improves the employment potential for all disabled staff.
Chapter 2
Research concepts and analytical framework
The principal concepts which will be used for analysis in this thesis are reviewed in this chapter. It begins with an analysis of the work of Antonio Gramsci and discusses why his theories of ideology, good sense, common sense, hegemony and the role of organic intellectuals are relevant to this research. It illustrates how an analytical framework based on these concepts can be applied to disability issues in general and with specific reference to this research. The concepts of ‘assimilation’ and ‘integration’ are discussed and it is shown that (when used in parallel with Jewson and Mason’s analysis of equality approaches examined in the previous chapter) they can be used to provide a broader understanding of how people with a variety of impairments can be offered greater employment opportunities. Finally, Euske and Euske’s (1991) model of different organisational rationalities is reviewed to help explain the operational realities of the two case study organisations.
Antonio Gramsci
Gramsci’s work is relevant to this thesis for several reasons. Firstly, it offers a theoretical concept of power which acknowledges economic and ideological interests. He argues that agents perform inside economic and ideological structures and that economic, cultural and social factors cannot be separated theoretically. Hence, from a Gramscian perspective, the social model dependence on structure as the principal cause of oppression on passive disabled agents (Abberley 1987; Barnes 1990; Brisenden 1986; Finkelstein 1980; Hunt 1966; Oliver 1990; UPIAS 1976) becomes problematic. As Imrie (1996) shows, this structure/agency oppositional stance has been recognised as difficult to sustain by contemporary writers on disability issues as, ‘disabled people are not merely passive recipients of the built environment, but actively seek to challenge and change it’ (145).
There are other approaches which could be applied to this research such as post-structuralism or postmodernism. As this research shows that from both a historical and contemporary position disabled actors have been influential in removing disabling societal barriers it was important to use an analytical framework that could accommodate both structure and agency as sources of power and this is what Gramsci’s theories do. So it was possible to avoid some of the problematic issues that would have arisen had either post-structuralism or postmodernism been used as the division between structure and agency does not appear in the accounts of either theory. For some post-structuralists the body is considered devoid of social meaning, a passive vessel on which authoritarian discourses of power are imposed (Paterson & Hughes 1999, 598). Whereas for some postmodernists all that is witnessed in the social world are competing discourses where any judgments regarding validity are formed on the basis of which discourse produces the most convincing account (Kitzinger 1987; Kvale 1995, 25-27). Both the above approaches have been applied to disability research, (Corker 1996, 1998; Corker and French 1999; Meekosha 1998; Shakespeare 1998). However, whilst such formulations may be capable of explaining how power is exercised, they do little to explain why power is exercised. The role of agency in Gramsci’s work maintains that subjects exercise power in order to support the material interests of rival groups.
Moreover, some writers on disability draw on Gramsci’s work to argue that a historical continuity of oppression of disabled people can be found in the dominance of the medical profession. For example, Barnes states:
For Oliver this ‘personal tragedy theory’ of disability has, in turn, achieved ‘ideological hegemony’ (Gramsci 1971), in that it has become translated into common sense and everyday assumptions and beliefs. (Barnes, cited in Barton and Oliver 1997, 11)
Additionally, Shakespeare assigned the label of Gramscian organic intellectuals to those writers who from the mid 1960s forged the social model of disability (Shakespeare 1994, 73). However, although these authors applied individual concepts from Gramsci's work, none applied a critical framework which drew together several key aspects and applied such a framework to either historical data, or to contemporary everyday actions by disabled people. This thesis adds to the body of knowledge on disability by addressing this point. Gramsci’s concepts can be extended to include disabled people through his analysis of intellectuals and their tendency to construct a critique of common sense. They can also be used to examine how some disabled academics have attempted to challenge the dominant ideological understandings of disability. However, it would be incorrect to suggest that applying Gramsci's concepts is unproblematic, and the following discussions considers some of the difficulties in using his work.
Gramsci did not live long enough after his imprisonment to interpret his prison notebooks into a comprehensive theory of class struggle in Italian society (Sassoon 1982). Hence the interpretation of his concepts has been undertaken by other authors who have found inconsistency in his application of terms. For example, Gramsci’s concept of hegemony takes as a principal reference the nature and mechanisms of bourgeois class rule in stable capitalist societies (Anderson 1976/7, 1985; Mouffe and Laclau 1985). However, Gramsci is not consistent in his employment of the term hegemony or the related concepts of state and society (Hoare & Nowell 1976; Anderson 1976/7). The latter concepts receive explicit address in the work of Donzelot (1979; 1980), with Laclau focusing on the constitutive character of antagonisms and the logic of contingency and hegemony in the formation of political discourse, ideology, and identities as the basis for a radical democratic politics (Laclau 1977). The inter-related concepts of ‘hegemony’, ‘civil society’, ‘political society’, ‘domination’ and ‘direction’ are all held to undergo persistent slippage in Gramsci’s work along with the need to move beyond conceptions and strategies derived from an analysis of the nineteenth century and the discourse of Marxism. Gramsci can be held to be sensitive to the limits of the cornerstone Marxist principle of ‘economic-determination-in-the-final-instance’ (Smart 1986) with the concept of hegemony forming a new but inadequate analysis of politics and power with little said on the complex matters of the establishment of forms of hegemony and economism (Mouffe 1979). Consequently the theoretical interpretations of Gramsci contain contradictions which can make applying his theories problematic. These inherent problems are increased for non-Italian speakers who are dependent on the translation and interpretation of his concepts (Hoare & Nowell 1976) which should include any cultural influences on Gramsci (Verdicchio 1995).
Verdicchio (1995) cites Harris (1992) as stating that ‘Gramscianism’ is as varied as the number of those referencing their writing to his name. Verdicchio insists that Gramsci must be understood as a Sardinian introduced to Italian culture and in the context of the ‘Southern Problem’ involving the integration of Italy as a state (see Gramsci 1957; Forman 1988; Schneider 1998). This understanding of Gramsci’s past, taking cultural references into account, renders his work useful in the modern context as:
Gramsci needs to be read and studied, first and foremost, as a representative of the condition from which he was “educated” into Italianness. It is in such a re-reading that Gramsci can best lead us to “a new way of being Gramscian. (Verdicchio 1995, 175)
This said, it must be noted that similarities as well as differences can be found amongst ostensibly vying factions of Marxism. Stokes (1995) reminds us that Wittgenstein’s (1958) notion of ‘family resemblances’ suggests that no perfectly uniform set of characteristics need be found in order to identify members of a collective identity. The arguments put forward here concern the subtlety of cultural awareness and returning to a better understanding of the past so as to better understand the present and future possibilities. Key features and nuances in the journey back are to be built on in order to produce skills in the present analysis taking account of present conditions.
It was her knowledge as a native Italian which drew Danieli (1994) to return to the Gramsci’s original Italian texts and applying her cultural knowledge she uncovered subtle but important differences between the original and translated versions (Danieli 1994, 18-22). From this starting point Danieli (1994) provided a Gramscian framework in order to analyse patriarchal and gendered power relations in three organizations. In this thesis, Danieli’s re-translation has been adapted to the concept of ‘disability’ by identifying how power is exercised in organisations ‘of’ and ‘for’ disabled people. The following explains how Gramsci's concepts of ‘ideology’, ‘good sense’, ‘common sense’, ‘hegemony’, and ‘intellectuals’ will be applied to an analysis of the ideology and practice of equal opportunity for disabled people in the job market.
Ideology
An awareness of ideology is important in understanding the current models of disability. The ideology which underpins the social model is used to ‘accuse’ the medical model of being the fundamental cause of disability. At the same time it is also used to claim that the social model offers a remedy for all disabled people in terms of its ability to remove disabling barriers (Barnes 1997; Finkelstein 2001; Swain et al 1993). Oliver (1990) has argued that one consequence of industrialisation was an ideological belief that individuals who could not meet the physical requirements necessary to adapt to the new industrial systems became, in the main, excluded from work. For people with impairments this led to greater exclusion from the workforce compared with earlier times when work in a predominantly agricultural society allowed more chances of inclusion for impaired people.
For Oliver (1990), work plays the important role of facilitating social interaction in addition to providing a monetary means of support. He argues that those who are excluded from opportunities to take part in this are regarded as victims of a personal medical tragedy directly caused by their impairment (44). In his analysis Oliver promotes an alternative view of disability in terms of a homogenised mass of impaired people increasingly disabled by industrialisation’s demand for an able-bodied workforce. However, this ideological stance is problematic, because it does not account for groups of impaired people who could work within the new industrial systems making any claims of homogeneity difficult to sustain.
The relationship between ideologies and practices requires an analysis which Gramsci’s work provides. For Gramsci (1971), ideology is not a system of ideas that arises out of a single aspect of the social (in this case the economic) base but a function of the totality of a society’s lived practices and experiences which influences personal acts and moral behaviour. He argues ideology is simultaneously a system of belief and practice (326-327). In accepting that both ideas and practice form ideologies, Gramsci also observes that often a contradiction appears between theory and practice:
Various philosophies or conceptions of the world exist, and one always makes a choice between them. How is this choice made? Is it merely an intellectual event, or is it something more complex? And is it not frequently the case that there is a contradiction between one's intellectual choice and one's mode of conduct? Which therefore would be the real conception of the world: that logically affirmed as an intellectual choice? Or that which emerges from the real activity of each man [sic], which is implicit in his mode of action? And since all action is political, can one not say that the real philosophy of each man [sic] is contained in its entirety in his political action? (326)
Gramsci argues that multiple ideologies based on practice are likely to be present in a society. Although (as noted above) it has been claimed that the dominant ideology of disability is embedded in a model of personal tragedy which has led to institutionalisation and medical interventions for impaired people (Oliver 1990, 83) nevertheless, a competing ideology must have existed to some extent since not all impaired people were disqualified from work. It would be fallacious to argue, for example, within the logic of Oliver’s model, that people with hearing impairments would necessarily be excluded from the extremely noisy environment of a cotton mill. Hence Oliver’s analysis of the ideological effects of industrialisation on disabled people contradicts that of others with different impairments from his own. Based on their particular personal experiences, such people may not necessarily accept his arguments, So, although the common term ‘disabled’ has been used, in reality, contradictory ideologies seem to be at work within it. Gramsci’s work allows an understanding to be developed which can account for these contradictions. It also can enable comprehension of the reasons why a common sense acceptance of an apparently homogenous group – ‘the disabled’ – can exist when members of that group experience disability in such disparate ways.
Gramsci’s theories will be used to explore the following questions:
• Are there any contradictions between the theory and practice of those attempting to find employment for disabled people?
• How do theory and practice fit with the outcomes that disabled people want from employment?
• What understandings are employed in everyday practices, and how are such practices accounted for?
These questions entail much more than a simple analysis of whether contradictory ideas are at work inside organisations, as in Jewson and Mason’s formulation (1986). SMO is run and controlled by a majority of disabled people and claims to offer better opportunities for disabled people by following the social model. One of the objectives of this research is to determine whether disabled people found the social model was unproblematic in practice, or whether they felt that theory and practice were incommensurate with each other. This is more than simply an academic question, because if politically committed disabled people have difficulty translating the social model usefully into practice then there would appear to be little chance of the model gaining acceptance in wider circles. It will also be examined whether NDDP were able to apply their method consistently when providing opportunities for disabled people. Again if ideas are not translated into practice, then policy as originally framed would appear to have a reduced chance of success.
This thesis will also address one particularly pertinent problem raised by Gramsci. It will consider how the contrast between thought and action is made possible as:
the co-existence of two conceptions of the world, one affirmed in words and the other displayed in effective action [...] is not merely reducible to the explanation of self deception. (Gramsci 1971, 326-27)
Or in other words, it is not a consequence of false consciousness. Gramsci’s work is used in order to push the concept of ideology further by considering his concepts of ‘good sense’ and ‘common sense’.
Common sense and good sense
The concepts of good sense and common sense are useful to this thesis because they help to explain how contradictory ideologies function and co-exist. They help to distinguish between the good sense of regarding disability as a collective form of discrimination, a product of disabling social attitudes and environments which disable impaired people and the common sense which can argue that impairment is an individual phenomenon which prevents some people from engaging fully in social activities and thus it is primarily the impairment that disables. Before expanding this discussion it is necessary to identify the starting position that Gramsci (1971) adopts:
It must first be shown that all men [sic] are ‘philosophers’, by defining the limits and characteristics of the ‘spontaneous philosophy’ which is proper to everybody. (333)
He argues that this spontaneous philosophy, available to everybody, can be revealed through their common sense understandings of the social world. In expanding the character of common sense, Gramsci maintains:
Common sense is not a single unique conception, identical in time and space. It is the ‘folklore’ of philosophy, and, like folklore, it takes countless different forms. Its most fundamental characteristic is that it is a conception which, even in the brain of one individual, is fragmentary, incoherent and inconsequential, in conformity with the social and cultural position of those masses whose philosophy it is. (419)
For Gramsci, ‘common sense’ represents the lens, the uncritical and un-reflexive way by which individuals interpret the world based on received or conventional wisdom (Simon 1982, 63). Common sense is essentially ‘a’ theoretical as it is informed by an individual’s feelings, perceptions and experience rather than by deliberate cognitive reasoning. Gramsci compares it to a philosophy of folklore, and like folklore it exists in many forms. Even in one individual common sense will be contradictory as it is based on pragmatic considerations influenced by social and cultural factors and constituted through ‘diffuse, uncoordinated features of a general form of thought’ (Gramsci 1971, 330).
Gramsci argues that once an individual has accepted a particular form of common sense based on experience, opinions, convictions, criteria for discrimination and standards for personal conduct (339) then it does not follow she/he will change that interpretation even if the assumptions it is based on were shown to be incorrect by a third person who holds a different view. This is because common sense is not a function of reason; rather it derives from the diffuse convictions based on the understandings within the social group the individual shares. Even when the person cannot defend their position against a reasoned attack they tend to persist with their common sense understanding because they know someone in their social group is capable of providing an equally powerful reasoned defense as they have heard it before. (339). Common sense is a collective form, widely diffused, shared and accepted by social groups.
However Gramsci (1971) contends that within common sense is contained ‘a healthy nucleus of good sense’ which, he argues, ‘deserves to be made more unitary and coherent’ (328). For Gramsci, ‘good sense’ is analogous to philosophy, in that it is inherently coherent, logical and critical. Good sense is thus an ‘intellectual unity and a conformity with a perception of reality that has gone beyond common sense and become, if only within narrow limits, a critical conception’ (333).
Good sense displays a consistent, rational, philosophically intelligent stance. Consequently it holds an elevated moral and intellectual position over common sense, and can be used to express theoretically certain perceptions of the world. Good sense is an understanding found through a critique of common sense and is identified by Gramsci when he differentiates between philosophy and common sense ‘in order to indicate more clearly the passage from one moment to another’ (330):
In philosophy the features of individual elaboration of thought are the most salient: in common sense on the other hand it is the diffuse, uncoordinated features of a generic form of thought common to a particular period and a particular popular environment. But every philosophy has a tendency to become the common sense of a fairly limited environment (that of the intellectuals). It is a matter therefore of starting with a philosophy which already enjoys, or could enjoy, a certain diffusion, because it is connected to and implicit in practical life, and elaborating it so that it becomes a renewed common sense possessing the coherence and the sinew of individual philosophies. (330)
So, the provision of a new philosophy analogous to good sense must commence with a critique of the ideology and practices or the discourse and folklore embedded in common sense. Gramsci illustrates the superior intellectual, moral and philosophical status of good sense over the uncritical basis of beliefs and folklore the base elements of common sense:
Philosophy is criticism and the superseding of religion and ‘common sense’. In this regard it coincides with ‘good’ as opposed to ‘common’ sense. (326)
Gramsci also argues that individuals, by holding both good and common sense understandings, are exposed to inherently contradictory positions:
The active man-in-the-mass has a practical activity, which nonetheless involves understanding the world in so far as it transforms it. His theoretical consciousness can indeed be historically in opposition to this activity. One might almost say that he has two theoretical consciousnesses (or one contradictory consciousness): one which is implicit in his activity and which in reality unites him with all his fellow workers in the practical transformation of the real world; and one, superficially explicit or verbal, which he has inherited from the past and uncritically absorbed. (333)
The question raised here, then, is how might a theory of good and common sense assist an analysis of disability discourse? The good sense understanding of disability which ‘has been inherited from the past and uncritically absorbed’ equates with a medical model of disability. Oliver (1990) claimed that this was generated by the medical profession and has become the collective common sense understanding in society. However, given that it was an understanding generated in the main by non-disabled people, such a form of common sense does not necessarily equate with disabled people’s experiences and is therefore experienced as contradictory.
Gramsci (1971) illustrates how the appearance of new social movements (in this case the recent disability movement) can challenge common sense. Therefore, the new social movement seeks to challenge the medical model as a form of common sense on the grounds that it does not reflect the reality of disability. In offering such a critique, the disability movement has attempted to develop a new form of understanding which becomes a new form of good sense in the form of the social model of disability. In order for it to become common sense it has to be accepted not only by those who have generated the new form of good sense, but also by society more broadly.
Historical data will be used to examine the claims on which the recent disability movement is founded, claims that urge us to accept the view that disability has always been considered a personal medical tragedy (Finkelstein 2001) and whether such an argument can be sustained will be explored. Empirical evidence will be used to examine whether discrimination against disabled people can be removed without reference to impairment simply by changing disabling environments and attitudes. An exploration will be undertaken of the reasons why those responsible for facilitating employment for disabled people are able to lay claim to be offering emancipation for all disabled people through opportunities to gain work.
Hegemony
Gramsci’s formulation of hegemony is helpful when attempting to understand the social construction of disability. In the first instance, it identifies that hegemony is not necessarily achieved through laws enacted through force but also by social groups acting to achieve change through consent. Here ideology and common sense intersect, because (according to Gramsci) hegemony is achieved when the social movement is capable of convincing other groups of their ideological stance (Sassoon 1982, 13-14). Thus hegemony becomes a product of the interchange between social groups based on economic, social, political and cultural values aimed towards the promotion of interests of that specific group.
It could be argued that advocates of the social model of disability have achieved some degree of hegemony in promoting their ideological understandings. For example, the Joseph Rowntree Foundation only supports research on disability if it is in accordance with the social model of disability (Burchardt 2001). The World Health Organisation has accepted many aspects of the social creation of disability in their latest taxonomic scale, ICIDH-2 (Bickenbach et al 1999). Some government sponsored organisations (for example, the Disability Rights Commission) also claim to be guided by the principles of the social model (DRC 2001). Many organisations have accepted the idea that there is a social component involved in the creation of disability. This is an ideological and hegemonic acceptance that begs one critical question addressed by this research: is this acceptance a new phenomenon? Unless it can be shown that, historically, social components were not regarded as contributory factors to disability then any claims that the social model is becoming more influential must be treated with some suspicion because in practice it could be claimed that organisations were simply adopting the model and using it to reinforce a historical continuity which had accepted the dual components of medical and social factors.
For Gramsci, hegemony is achieved through ideological and political leadership, the organisation of consent endorsed by group members (Simon 1982, 21). Gramsci (1971) states:
The supremacy of a social group manifests itself in two ways, as ‘domination’ and as ‘intellectual and moral leadership’ [...] A social group can, and indeed must, already exercise ‘leadership’ before winning governmental power (this indeed is one of the principal conditions for the winning of such power); it subsequently becomes dominant when it exercises power, but even if it holds it firmly in its grasp, it must continue to ‘lead’ as well. (57-8)
Hegemony can be regarded as having two aspects. ‘Intellectual and moral leadership’ which if accepted by other groups will lead to the implementation of power and domination but also requires continuous re-enforcement to maintain hegemonic control. However, hegemony includes the ideological but cannot be reduced solely to ideological dominance in isolation. It must be viewed in relation to classes at all levels, that is, economic-political and ideological-cultural (Sassoon 1982, 117). Gramsci not only considers hegemony in relation to class relations, but also to social movements, and thus offers an explanation for the rise of oppositional forces within particular groups. For Gramsci (1971), this process appears as one of continuous change:
A continuous movement takes place from the base upwards, a continuous replacement through all the capillaries of society, a continuous circulation of men. (212)
Although subject to challenge, he explains how hegemonic power is maintained:
Hegemony presupposes that account be taken of the interests and the tendencies of the groups over which hegemony is to be exercised, and that a certain compromise equilibrium should be formed - in other words, that the leading group should make sacrifices of an economic-corporate kind. But there is also no doubt that such sacrifices and such a compromise cannot touch the essential, for though hegemony is ethical-political, it must also be economic, must necessarily be based on the decisive function exercised by the leading group in the decisive nucleus of economic activity. (161)
The concept of hegemony will be used in this thesis in two ways. Firstly by analysing the resistance of organised groups of disabled people from a historical perspective it will identify the perceived sources of oppression for those groups. This can be achieved by considering the basis on which these social movements attempted to gain and maintain hegemonic power, first of all within their own social groupings and, secondly, as they attempted to expand their ideology to other social movements and groups. Gramsci’s theory of hegemony will also be used in the analysis of data collected from research participants working within organisations that claim to promote the view that disabled people can engage successfully in paid employment.
However, the question that still requires theoretical consideration is that of who the agents are who promote different ideologies and how their roles can be explained. Again Gramsci provides this analysis through his conceptualisation of intellectuals.
Intellectuals
Gramsci (1971) distinguishes between traditional intellectuals who promote existing ideologies and practices that have become common sense, and organic intellectuals who challenge those hegemonic ideologies. He argues that the production of a critical counter-philosophical ideology is, from both a historical and political position, dependent on the emergence of an intellectual elite (334). He considers this a necessary evolutionary step because:
A human mass does not ‘distinguish’ itself, does not become independent in its own right without, in the widest sense, organising itself; and there is no organisation without intellectuals, that is without organisers and leaders, in other words, without the theoretical aspect of the theory-practice nexus being distinguished concretely by the existence of a group of people ‘specialised’ in conceptual and philosophical elaboration of ideas. (334)
Gramsci does not restrict intellectuals to the role of philosophers or thinkers, he also considers the function they perform when promoting their conceptualisation of the world:
although one can speak of intellectuals, one cannot speak of non-intellectuals, because non-intellectuals do not exist. But even the relationship between efforts of intellectual-cerebral elaboration and muscular-nervous efforts is not always the same, so that there are varying degrees of specific intellectual activity. There is no human activity from which every form of intellectual participation can be excluded: homo faber cannot be separated from homo sapiens. Each man [sic], finally, outside his professional activity, carries on some form of intellectual activity, that is, he is a ‘philosopher’, an artist, a man of taste, he participates in a particular conception of the world, has a conscious line of moral conduct, and therefore contributes to sustain a conception of the world or to modify it, that is, to bring into being new modes of thought. (9)
Although Gramsci argues that all people are intellectuals, he notes that some function specifically in ways that order and maintain ideologies in social movements:
every social group, coming into existence on the original terrain of an essential function in the world of economic production, creates together with itself, organically, one or more strata of intellectuals which give it homogeneity and an awareness of its own function not only in the economic but also in the social and political fields. (5)
Thus Gramsci argues that intellectuals either maintain the existing ideology of the dominant group and thus reinforce hegemony or express a new ideology of a previously oppressed group, challenging the dominant ideologies which have become common sense. If a new ideology is to become hegemonic, it has to become accepted across a broad population.
Gramsci’s analysis of intellectuals facilitates a critical evaluation of the current disability debate. The social model of disability explains the phenomenon in polar opposite terms. Many organic social model intellectuals consider that their new ideology counters the traditional and hegemonic intellectual view that regards disability as a personal medical tragedy. In this thesis it will be considered whether this simplistic dualism is capable of withstanding critical scrutiny.
From a historical perspective, the understandings of organic disabled intellectuals who challenged traditional hegemonic oppressive practices will be drawn on and it will be considered whether the socio-medical dualism applied. It will also be examined whether, in contemporary organisations, the ideological stance of organic intellectuals translates into everyday actions and so aligns with the model’s polar opposite claims. If organic intellectuals who promote the ideological understandings of the social model cannot be seen to put theory into practice; and if organic intellectuals who do not overtly claim to support the social model do not display traditional medical model ideologies, then the claim itself that disability ‘theory’ can be reduced to two opposing models is suspect.
Gramsci’s work will also be used to examine some methodological issues. It has been claimed that research on disability has been conducted by traditional intellectuals, that is, non-disabled people working to a medical model, a traditional hegemonic form of common sense. (Oliver 1992; Zarb 1996). The challenge to this traditional common sense has been made in Gramscian terms by disabled organic intellectuals who have called for an emancipatory research agenda. Traditional intellectuals have used conventional understandings of how research should be conducted, whether from a positivistic or interpretative tradition. In this process, disability tends to become individualised as the traditional intellectuals (predominantly non- disabled people) operate a model of research which reproduces the common sense understanding of the medical model (Oliver 1992: Zarb 1996). The new organic intellectuals critically examined that form of common sense that determined how and upon whom research should be conducted. The result of this critical process is a call for a good sense alternative. This represents a challenge to the traditional understandings which, it is claimed, produce knowledge that does not reflect the lives of disabled people and presents little opportunity for their emancipation. Hence social model good sense argues that what is needed is a new research model. This new model entails changing the social and material relations of research production and necessitates handing over control of research on disability to disabled people. This group become the organic intellectuals challenging traditional research practices.
The critique of common sense demands that the emancipatory research paradigm should become hegemonic replacing traditional research methodologies and gaining wider acceptance as a new form of common sense in accordance with social model ideology. Such a demand resonates with earlier oppressed groups such as feminists and queer theorists.
Using this Gramscian framework and based on personal experience as a disabled researcher, this thesis will examine the principal claim of emancipatory research: that changing the social and material relations of knowledge production is sufficient in itself to allow unproblematic access to the research process for impaired people. If it can be demonstrated that emancipatory research is achievable for all disabled researchers without any consideration of restrictions caused by impairment, then it may be possible for the methodology to gain wider acceptance as common sense. However, if problems exist which cannot be reduced to changing the social and material relations then the possibility for emancipatory research to be widely accepted may be limited. Using Gramsci’s theories allows a deeper understanding of methodological issues to be made in terms of whether the calls from organic intellectuals for research on disability to be emancipatory and social model compliant are logically acceptable as good sense.
Having detailed Gramsci’s concepts that will be used in subsequent chapters, the discussion will now move on to the concepts of assimilation and integration which (as stated earlier) can be used in conjunction with Jewson and Mason’s (1986) formulation of liberal and radical approaches to equality.
Assimilation and integration.
One concept currently applied in many organisations seeking equality in their workforce is ‘managing diversity’ (Ellis and Sonnenfeld 1994; Kirton and Greene 2000; Liff 1997). One central feature of the concept is that organisations can benefit financially from the diverse culture and skills brought by individuals formerly disadvantaged by discriminatory practices against minority groups (Kirton & Greene 2000; Young 1990). Managing diversity may appear to be a means of achieving equality in organisations for disabled people but such a claim is problematic. Two problems are particularly significant. Firstly, from a social model perspective, any tendency to individualise disability could be regarded as reinforcing the personal tragedy model which (as Oliver argues) has historically been seen as the cause of disability (Oliver 1990). Secondly, because of the degree of heterogeneity within the group ‘disabled’ and the potentially competitive nature of disabling barriers, the removal of one barrier can introduce a second. As a consequence, managing diversity could prove extremely difficult for organisations to achieve and produce questionable financial implications (Woodhams & Danieli 2000). Therefore, the individualizing approach to managing diversity will not be considered. Instead impairment specific groups will be used as the focus of analysis within the broader group: ‘the disabled’.
The Jewson and Mason models of equality discussed in Chapter 1 provide a framework which reflects the practices that organisational members adopt when attempting to achieve some degree of equality. Their model adopts a group approach, attempting to address inequalities for those principally discriminated against on the grounds of gender and race (Jewson and Mason 1986). As discussed earlier, the social model of disability attempts to adopt the good sense approach of claiming homogeneity of a common group, disabled by society, and hence the Jewson and Mason model may appear to be equally applicable in the case of disability discrimination. However, it could be argued that although in the case of gender and race any claims of discrimination based on biological determinism is mistaken, the same argument cannot be applied to all disabled people.
Although both ethnicity and gender discrimination can be present in addition to disability discrimination (Vernon 1997) the consequences of some impairments mean that in some cases disability or impairment discrimination is justified. Arguably, if an organisation was recruiting for a public transport driver then discrimination against blind people is acceptable. The homogeneous concept of disability therefore becomes problematic and acts against it becoming widely accepted as common sense. Indeed, some disabled organic intellectuals have raised the problematic claim of homogeneity in relation to impairment and pointed to the specific differences and needs of visually impaired people (French 1993), the deaf and hearing impaired (Corker 1996) and learning impaired (Chappell 1996; Crow 1996). So if the ideological claims of homogeneity are internally inconsistent, any attempt to apply models of equality to the generic group ‘the disabled’ would also appear to be problematic. The question can now become: if the generic concept of disability cannot be applied consistently, do models of equality exist which can be used to illustrate how greater opportunities can be provided for the smaller impairment specific groups? Here the concepts of assimilation and integration may be of use.
This research will draw on the concepts of assimilation and integration developed in the USA for racial minorities. Gordon (1964) chronicles the evolution of three theories which can be considered as exemplars of the difference between assimilation and integration. ‘The Anglo-conformity theory’ argued in favor of the rejection of the immigrant’s culture so that it could be replaced by the behaviour and values of the Anglo-Saxon dominant group. This approach is based on assimilation and can be regarded in terms of the negation of ‘difference’, achieved as the minority group relinquishes cultural identity in favor of dominant group characteristics. However, this theory relies on a differential between the dominant and immigrant groups which eventually proved unsustainable as culture and inter-racial relationships began to erode the dichotomous group identifier.
The ‘biological reality’ of mixed race informed a second assimilation proposition: ‘the Melting Pot theory’. This theory accepts the biological unity of the Anglo-American with other immigrant groups that resulted in the formation of a new hybrid American culture. Again equality is perceived in terms of a homogeneous group where ‘difference’ has been reduced in this instance through biological evolution and the merging of cultures.
The third theory of American assimilation is ‘The Cultural Pluralism theory’. This more closely aligns with an integration theory or the acknowledgement of ‘difference’. Here the preservation of community life and critical portions of the culture of the new immigrants’ minority group status is acknowledged albeit within the context of American citizenship, with political and economic integration into American society the equality ‘goal’.
This summary of the three main theories is not intended as a comprehensive analysis but is provided to inform an understanding of the fundamental difference between assimilation and integration: the acceptance or negation of ‘difference’. It is not suggested that either assimilation or integration has proved successful in the USA or UK. Race riots (Davis 1997) and unequal access to education, housing and employment (Loewen 2000) could be regarded as failures in the American system; whilst in the UK, similar unequal access to education, housing and employment opportunities for ethnic minorities (Solomos & Back 1994, 62) together with recent race riots have called into question the appropriate nature of race equality policies (Howe 2001). However, the concepts of assimilation and integration can allow a parallel to be drawn between race and disability.
The disability movement demands a homogeneous group identity (Campbell & Oliver 1996) although if the experience of the race movement is considered, the homogeneous concept itself can be problematic. One issue which arises when a social movement presents itself as a homogeneous group is whether or not minorities within that group achieve equality. In other words, how do minorities gain group acknowledgement that ‘difference’ exists within the generic group which should be recognised and valued (Wachtel 1999).
The negation of difference within social groupings can prove politically problematic (Small 1994, 176), as it can produce internal hierarchical structures (Acker 1990). Such problematic issues were evident in the USA during the 1960s when political activism and the fight for civil rights for ethnic minorities highlighted that whereas on the one hand a single group identity can increase the potential political impact of the group, the goal of producing such a group identity was to negate ‘difference’. So, ‘black’ in terms of racial discrimination can be regarded as a ‘political colour’ (Donald & Rattansi 1992) where a homogeneous political group identity gains precedence over a culturally heterogeneous population. Equally, to define an ethnic group as ‘Asian’, whilst reducing any issues of discrimination to one group, ignores any cultural, political or economic difference between Indians, Pakistanis or Bangladeshis. In this regard, the group with the dominant identity (‘black’) can benefit as resources tend to be directed at that dominant sub-group (Small 1994, 174).
So, with reference to race equality, two concepts exist dependent upon whether ‘difference’ is negated in favour of a homogeneous group (assimilation) or ‘difference’ is acknowledged within a heterogeneous population (integration). One conclusion which can be drawn from the racial equality movement is that although the construction of a homogeneous group can assist political aims, it can paradoxically create hierarchical structures within the group which themselves can discriminate. In analysing the empirical research, it will be considered whether the generic term ‘disability’ does induce hierarchical structures, how these affect the employment opportunities for disabled clients and on what criteria any hierarchy is based.
Although the concept of clearly defined alternatives i.e. assimilation and integration is problematic, and it could be argued that integration effectively becomes a means of achieving assimilation (Paterson and Hughes 1999), the models of assimilation and integration discussed above can be applied to models of disability to illuminate different approaches to equality. Within the social model of disability, the defining characteristic for group membership is that the individual has an impairment (Finkelstein and French 1993). However, as no analysis of impairment is defined within the model the homogeneous claim of group membership can be maintained. Hence the sole claim of ‘difference’ from any other social group is impairment. In this context, integration is the acceptance of difference and the accommodation of that difference by changing the environment, the job specification and the type and nature of work to allow participation in work for disabled people.
In contrast, assimilation is the negation of difference. It can be viewed as a reinforcement the medical model – be like us – which involves changing the impaired body. The solution which would enable assimilation would be either to fix the body in order to make impaired people the same as non-disabled people or to select people whose impairments do not produce any restrictions which would prevent their assimilation into existing work practices and environments. The concepts of assimilation and integration will be used during the analysis of empirical data to ascertain how participatory organisations attempt to include disabled people in the workforce.
If two polar opposite models of disability exist in organisational practices then it might be expected that SMO would attempt an integration strategy whereas NDDP might more closely follow an assimilation approach. Using these concepts the research will determine if the organisations operate to different models of disability or if the two model construct is too simplistic to represent organisational practices. The conclusion of this chapter will consider whether the rationality behind both organisations can influence organisational practice.
NDDP is a government funded public sector organisation charged with delivering policy. SMO on the other hand is a registered charity primarily dependent on local authority contracts for financial survival. The following section considers how organisations which are non-profit making and publicly funded rationalize their purpose and how this in turn can affect organisational practices. Again this consideration will be useful for the analysis of empirical data undertaken in chapters 6, 7, and 8.
Differentiating organisational ideologies.
SMO and NDDP share a common mission of seeking to improve the employment opportunities for disabled people. However, the ideology each adopts to achieve this organisational mission would appear to differ. SMO proclaims that its organisational practices and procedures are guided by the principles of the social model. However, NDDP does not acknowledge any model in the formation of its practices. The purpose of this section is to consider from a theoretical position how these differing ideological standpoints can affect organisational operations. Both organisations can be classified as publicly funded, not-for-profit organisations (PNO), a classification which might suggest that ideology and funding can affect organisational practices.
Drawing on earlier work on institutional theory (Meyer & Rowan 1977), Euske and Euske (1991) developed three ideal types of PNO and explored the implications of each. The three types were shown to be related to the ideological understandings of organisations and the rationality they employede to create legitimacy with stakeholders and hence improve the potential for organisational survival. The three types were defined as: Technically Rational (TR), Institutionally Rational (IR), and Politically Rational (PR). The basis of Euske and Euske’s (1991) analysis was the ways in which organisations maintained legitimacy when transferring organisational inputs (such as financial support) into outputs; in short, how they delivered an organisational mission when outputs were not always clearly defined or quantifiable (81).
In a TR organisation the structure and processes are designed to achieve efficient operations, similar to manufacturing processes in private sector organisations. As a result, a TR organisation is principally concerned with managing the technical means of production to deliver efficient processes which can be monitored against production targets. In order to deliver the organisation’s mission, staff are trained, coached and motivated by managers to achieve increased efficiency. Efficiency gains are achieved through close monitoring of outputs, determined by managers. NDDP could be regarded as representing a TR organisation because in the relationship between inputs and outputs (that is, for the investment of time, resources and effort) the organisation attempts to transfer these resources as efficiently as possible to outputs. ‘Efficiency’ is defined here as the minimal use of resources to achieve organisational mission. In the case of NDDP, this means improving the employment potential for previously unemployed disabled people. Hence internal systems involve target setting, agreed procedures and established criteria which can be monitored and controlled.
An organisation founded on IR would not primarily consider efficiency in relation to the determination of outputs as a principal concern. It is more relevant to use legitimacy in delivering a mission, an emphasis which does not necessarily lend itself to quantification techniques. For example, an organisation providing bereavement counselling could have difficulty in determining how long a counselling session may take; how many sessions would be necessary; which counselling methods would be most appropriate, and how effective the results of their services were. Hence the IR organisation employs organisational structures designed to facilitate an appropriate response to mission delivery as perceived by stakeholders. So (in the example used) stakeholders appreciate the inappropriate nature of target setting in bereavement counselling and are consequently reassured of the organisation’s legitimacy.
The maintenance of legitimacy is assisted by ensuring staff hold recognised qualifications appropriate to their function in the organisation which serves to reassure stakeholders that professional standards are observed. Training in an IR organisation can be varied and not necessarily demonstrably geared towards any notions of efficient operations. For example, counsellors could receive training in specific areas of trauma even if no clients were immediately requiring these services.
From the position of a TR organisation, the IR organisation can appear chaotic, un-coordinated and inefficient. In relation to disability, an ‘Institutional Rationality’ might be found in certain sheltered workshops that provide therapeutic work (Visier 1998). In such organizations, for any amount of inputs outputs can be indeterminate because the mission is to provide therapy and not necessarily efficient production methods capable of quantification against a measured norm. The mission is geared towards meeting the needs of the individual at whatever pace may be required rather than against the demands for a worker to produce a specified output in return for any financial payments.
The principal aim of the PR is to achieve political influence which it seeks to do by securing control of its own resources. So for example, a PR organisation could apply both TR and IR practices if this ensured its survival which would then allow the organisation’s political agenda to be followed. Hence the PR can be characterized as capable of adaptability with the control of resources aimed at driving political agendas taking precedence over any stated mission.
Within a PR, the staff is managed with a view to constructing coalitions based on political identity which contributes towards a critical resource base. Training of staff in a PR can privilege the political ideology of the organisation over general technical training although if funding (for example) is dependent upon staff holding qualifications demanded by the funding body then the adaptability of the PR would allow such technical training to be made available.
An example of a PR organisation might be found in local or national disability coalitions where funding is provided to promote political activity or to facilitate change. Derbyshire Coalition of Disabled People promotes the concept of independent living for disabled people and adopts the social model of disability as an ideology to facilitate their mission (Leach, 1996). Once more, the relationship between inputs and outputs is ambiguous since for any amount of inputs no corresponding outputs can be accurately pre-determined or assessed.
Each ‘type’ employs a different rationality aimed towards organisational survival by reassuring stakeholders that the organisation’s mission and hence its legitimacy is being maintained. Meyer and Rowan argue that organisational legitimacy and survival potential is increased if an isomorphic association is established between all stakeholders (Meyer and Rowan 1977). For example, funding agents, political allies and individual supporters are more likely to continue to provide financial support if the organisation translates funds into the socially desirable outputs that were the ‘building blocks’ from which the it emerged in the first place(Meyer and Rowan 1977, 344).
NDDP would seem to be more closely aligned with a TR model as it has the mission of providing equality of opportunities for disabled people to gain paid work. Although at a macro political level the creation of the organisation could be regarded as politically influenced (Drake 2000; NDDP 1999; Roulstone 2000) in organisational terms there is no overt political dimension other than that set by government: to assist one million disabled people gain paid work (Hibbet 2000; NDDP 1999). Hence a target was set and the outcomes closely monitored (Calvi 2003; Disability Now 2002). The setting and monitoring of targets would suggest NDDP was closer to a TR than either of the other two organisational types. However, if the organisation also operated to a medical model of disability, then (as discussed earlier) it might be expected to adopt an assimilation approach which could simplify and aid its efficiency. This is because assimilation would only be available to those who could work with reasonable or no adjustments to existing work roles, or for those where medical intervention can cure impairments thus removing any barriers to work. On the other hand, if NDDP can include disabled people where the barriers to equal opportunity are accepted as principally environmental or attitudinal, then it becomes difficult to argue that the organisation operates to a distinct model of disability.
By comparison, SMO has an overt political stance of adhering to the social model of disability. If the organisation can be represented as a PR then the degree of adaptability required to achieve the desired control of resources to further their political aims may prove to be internally inconsistent. For example, although SMO may adhere to the social model is it possible for contract-awarding bodies to do likewise, and if not, how can the organisation resolve any conflicts of ideology? In other words, can SMO operate as a PR and remain ideologically consistent, or in practice is the organisation only capable of continued survival by relaxing its ideological commitment to the social model of disability? Such questions will be addressed in later chapters. In the following chapter, the methodology employed in conducting the research will be discussed.
Chapter 3
Research Methodology
This chapter discusses the methodology adopted in conducting the research for this thesis. It will raise some problems in relation to the methodological advice offered by traditional methodology texts in relation to disabled researchers and argues that such advice assumes that researchers are non-disabled. It then moves on to problematise the methodological prescriptions emanating from disability researchers who advocate emancipatory research as an alternative to traditional approaches to researching disability.
Methodological approach
Methodological choice is often presented as a decision between two opposing paradigms (Parlett and Hamilton 1977) - a positivist or phenomenological approach - which can be equated to the difference in approach between the natural sciences and social anthropological paradigms (Stronach 1997, 23-24). However, reflecting upon the differences between the two traditions, Hammersley (1996) suggests:
If we look at research today in the human sciences we find that much of it does not fall neatly into one or other of these categories. There are multiple methodological dimensions […] these do not lie in parallel and each involves a range of positions. (160)
Some argue that often the choice of methodology resides more in pragmatic considerations such as time, resources and access (Bryman 1988) while for others the oppositional paradigmatic stance is problematic (Denscombe 1999; Hammersley 1996).
The research conducted for this thesis utilised qualitative methods: historical documentary data; contemporary documentary data; formal and informal interviews, and participant and non-participant observation. Historical archived documentary data was used to evaluate whether the social model of disability is new. Research conducted in SMO constituted an ethnographic study using contemporary documentary data, participant observation and formal and informal interviews in order to investigate whether the social model of disability should and can be implemented in practice. Research on NDDP was more akin to a case study in which interviews were conducted and in order to investigate whether the organisation was operating according to a social or medical model of disability.
The research design and research methods were selected because they seemed the most appropriate for answering the research questions. They were also influenced by an acknowledgement that respondents were likely to be disabled and have a variety of impairments and it was therefore important to ensure that any participants, including the researcher were not disabled by the research methods used. This is rarely acknowledged as an issue which needs to be taken into account when designing research projects.
Certain research methods can cause particular problems for disabled researchers and respondents. Questionnaires may have been considered the most appropriate research techniques as some respondents could have been asked to complete them electronically – an accessible form of communication for the researcher. However, most of the organisation’s clients who participated in the research either did not have access to computers or did not have the skills to use them. Obviously, these respondents could have been asked to complete hard copies of questionnaires but using hard copies of would have disabled the researcher. The use of questionnaires also assumes that respondents are literate or have no other impairments such as dyslexia. Such assumptions can result in people with particular forms of impairment being effectively excluded from the research. One solution might be to provide questions in the form of multiple choice answers and read the choice of responses to respondents and tape record their responses either face to face or via a telephone but this would, of course, potentially exclude people with hearing impairments.
Whilst methodological texts suggest triangulation of methods in order to increase the validity and reliability of research, they do not consider that triangulation may be required in order to include the widest demographic population of disabled people. This presents a challenge to many traditional methodological texts which take for granted an ability to read and understand and it would also have an effect on the time and cost of such research methods.
This thesis will add to the body of knowledge on research methodology by examining the relationship between one specific impairment - ‘blindness’ - and the accepted understanding of how to conduct research which is expressed in many prescriptive methodological texts. This is an important issue because if impaired people are engaging in the research process then it is arguable that any potential restrictions in accessing research methods which are caused by their impairment require recognition so that alternative methods or techniques can be used. For example, some traditional understandings tend to assume ‘seeing’ is an essential feature of observation (Slack 2000). If this statement is uncritically accepted then any blind researchers would ipso facto be unable to conduct observational studies. The following description of the methods used to conduct this research illustrates the challenges to traditional methods that my own impairment created.
Increasingly researchers are advised that methodological triangulation, combining both quantitative and qualitative methods can increase the validity and reliability of research. Miles and Huberman (1994,4) argue in support of qualitative methods but suggest that validity and reliability can be increased if quantitative methods are used to collate and present findings as ordered graphical representations thereby removing the need to present unwieldy large volumes of text. For many this may appear an attractive proposition but it presents significant and potentially intractable problems for a blind researcher.
Whilst graphical representations may aid understandings for those who can see they simultaneously impose a barrier to participation for many blind researchers. For example, Martyn Denscombe (1999) suggests in The Good Research Guide for Small-Scale Social Research that after data collection the researcher should:
Code it so that non-numerical data is reduced to numbers; group the data by producing an ‘array of raw data’ and ‘a tally of the frequencies, so that you get ‘a clearer visual grasp of what the data holds. (181-82)
He continues with a discussion of how to present data:
With descriptive statistics the process of transforming a mass of raw data into tables and charts is vital as part of making sense of the data […] The point of producing a table or chart is to convey information in a succinct manner and use visual impact to best effect […] the skill of producing good tables and charts rests on the ability to: present enough information without ‘drowning’ the reader with information; help the reader interpret the table or chart through visual clues and appropriate presentation; use an appropriate type of table or chart for the purpose. (182-83)
According to this text the only way to present quantitative results is through some visual means or other accompanied by a succinct explanation. Clearly this was not possible for me even if the research question was appropriate for quantitative methods. Any choices made in conducting this research were influenced by the constraints imposed by an impaired body.
The point is that blindness does have consequences which affect specific research methods. However, it is not tenable to prevent or potentially disable others by suggesting that quantitative methods should not be used. It is not the case that all blind researchers are incapable of quantitative research but it can be argued that their ability to select and benefit from graphical imagery is affected by the severity of their impairment. It would be difficult for this researcher to defend an argument from that data had been generated in graphic form by a sighted helper as the appropriateness and accuracy of the graphic could not be personally verified and any subsequent independent reference would be impossible. Such an argument would not however be made by someone with a hearing impairment.
The choice of qualitative methods was not just a result of what would be the most appropriate methods for answering the research questions but was also a result of my particular form of impairment and illustrates the problems of classifying people with impairments under the homogenous category ‘disabled’. Nevertheless the rejection of quantitative methods and the adoption of qualitative methods did not resolve the methodological problems encountered in conducting the research for this thesis as the following discussion illustrates.
Accessing and using documentary data.
Text books offering advice on the use of documentary data focus on how to locate appropriate documents, the nature of documents and problems of interpretation (see for examples: Bryman and Burgess 1999; M.R. Hill 1993; Silverman 1997). The use of documentary data for this research falls into two categories: an historical archive search illustrates how disability was perceived in relation to work from early in the twentieth century, and contemporary documentary analysis assists an understanding of how the participating organisations created their own discourses of disability.
In the case of the historical search, two archive data sources were accessed which provided comparisons from the same era. Permission was gained to examine the records of the Transport and General Workers Union and those of the Trades Union Congress held at the University of Warwick Modern Records Centre. Similar authorization was obtained to access records from Henshaw's Society of Blind People in Manchester and the public records of the Society held in Manchester University’s John Ryland’s Library. However the documents held are those bequeathed by the owners, and consequently the available material cannot be regarded as comprehensive. This type of constraint together with others (including time and the cost of travel) are recognized as problematic when using archive sources (M.R. Hill 1993, 24). In the first instance, the availability of data was restricted by the decisions of owners regarding which records they choose to archive and the degree of detail incorporated by archivists during the cataloguing process. The two trades union archives had been catalogued with sections which referred to ‘disability’ as a topic area, hence the initial search for relevant files was done by the archivist. During analysis consideration was given to the source of the information and the purpose for which the document was prepared.
Although documents are often produced for a specific, intended audience it is not really possible to determine by whom they will be read or how they will be interpreted (Atkinson & Coffey 1997, 58-60; Platt, 1999a, 216-17). For example, it has been argued that the annual reports of some charities were written so that the documents acted as an external sales tool to attract new subscribers by drawing on feelings of Christian pity and that they could also have been used to ‘massage’ the egos of existing named donors (Shapeley 1994, 138). Shapeley argues that such documents tend to present optimistic representations of past triumphs and positive predictions for the future.
In order to avoid dependence on such restricted information documents were analysed against a wider political, social, economic and environmental background (Mason, 1998; Platt, 1999a). However, this process has inherent hermeneutical difficulties, because although documents may contain uncontested facts such as place and time (Platt, 1999a) the only means of validating one document is by interpreting a second, relating one discourse to another. So, if a document produced by management suggests ‘conditions for workers were good’ the statement itself is relative to other organisations and their employment practices and confirmation of the statement should be sought from another source. Such sources include trade union records although their opinion of what constitutes ‘good working conditions’ may vary significantly from that of management. Thus the researcher is left with a problem of interpretation of what can appear to be contradictory accounts of the same event. In making decisions about the legitimacy of interpretations of social interactions, the subjectivity of the researcher can additionally influence the way events are interpreted (Alvesson & Skoldberg 2000, 70; Platt 1999b, 232). The constraints and caveats noted above may be expected when researching historical events, although accessing documents from contemporary organisations also can present problems.
No documentary information was provided by NDDP. This may have been because the project was a relatively new government initiative and hence any internal documents and minutes of meetings could be politically sensitive if ‘leaked’. Consequently, only publicly available documents were used including critiques of the scheme. Texts broadly in support of this new ideology and those which explained policy were reviewed (including Blair 1997, 1998, 1998b; Brown 1999; Driver & Martell 2000; Giddens 1998; 2000; Harman 1997; Mandelson & Liddle 1996; NDDP 1999; Peck 1999; Powell 2000) together with some that were critical of the ideology and policy (Drake 2000; Fairclough 2000; Nevaro 1999; Popple & Redmond 2000; Prideaux 2001; Toynbee 2001; Toynbee and Walker 2001).
In contrast the level of internal documentation made available by SMO was extensive. All board, finance and officers’ minutes of meetings were made available although, again, the accuracy and purpose of the documents required analysis before any information was extracted. SMO is a highly political organization and all documents including minutes of meetings were vetted and often amended by the CEO before publication. For example, during a board meeting, it was noted that a deaf board member made a comment which firmly supported the medical model of understanding disability but the published minutes omitted this comment. Discussions with the company secretary later confirmed that although noted in the hand-written minutes, the CEO had insisted that the comment should be removed from the approved record of the meeting. It is acknowledged that minutes are not verbatim accounts but rather a record of what was decided rather than spoken (Atkinson & Coffey 1997, 57). However, in the case of SMO, information became deliberately distorted.
The systematic distortion of communications was achieved through unequal power relations and rationalised within a dominant political ideology (Alvesson & Skoldberg 2000, 120). Here the dominant political rationality of SMO was made visible as the CEO acted to maintain the illusion of a collective adherence to the social model of disability as opposed to the reality in which individual members displayed contradictory common sense understandings. The contradiction acknowledged the political importance of an organisation unified under a single social model banner, run and controlled by disabled people. The process of communication distortion was observed by several SMO employees and on a number of occasions those who recorded the minutes of meetings commented on the difference between their hand-written minutes and the published official versions.
The interpretation of documents requires that researchers question authorship; the status of the document (internally or externally produced), and the political ethos of the organization. Hence any documents obtained through ‘official’ SMO channels required significant corroboration by questioning staff over the veracity and completeness of the documents: a process akin to data triangulation. So, whilst for historical analysis there is little option other than using documentary data to construct events, within contemporary organisations it is possible to challenge documentary accounts by interviewing individual actors who can add depth and alternative interpretations to recorded events.
The above issues are of course problems familiar to all researchers. However, my own impairment did result in some particular additional problems. The help of a sighted person was necessary to locate appropriate texts in archives and she would read documents and then summarise their contents verbally. Any document considered relevant was then read aloud in its entirety onto an audio tape which I later transcribed onto computer. This was a time-consuming process and there is little advice in methodological texts on how such a process might be managed more efficiently because it is assumed that researchers are not disabled. This omission is also evident in discussions of ethnography.
Ethnographic research
Ethnography has its roots in social anthropology where researchers attempted to understand the social interactions and cultures of societies by placing themselves within the host society and adopting the social anthropological canons of watch, hear, and learn (Malinowski 1922). In this tradition the researcher places him/herself as an objective recorder and chronicler of societal interactions and behaviours. For ethnographers this approach can be considered as ideographic where the concern is primarily involved with detailed, rich, accurate descriptions of events witnessed at first hand ‘in the field’ (Denscombe 1999, 70). However, ethnography has been criticised about its claims of objectivity and usefulness if what is only ever produced are unique accounts which do not inform wider theories of society. Additionally, there is a debate over what constitutes an ethnographic study. For example, whether such study must involve a population or if it is possible to study an individual studied ethnographically. (Baszanger & Dodier 1997; Hammersley & Atkinson 1995; Manning 1995; Van Maanen 1995). This research avoids any issues surrounding individual ethnographies as the research was based on a small organisation of 28 people.
Van Maanen (1995) identifies some of the epistemological problems arguing that ethnography (as opposed to a historical social anthropology tradition) has become an, ‘epistemological trial by fire’ (2). Such critiques are directed at many of the underlying assumptions and ‘taken for granted’ beliefs derived from the social anthropology tradition. Such assumptions include ethnography’s failure to disengage with scientific stances such as essentialism (Denzin 1988) and the perfidious relationship between researchers and their subjectivity. The latter questions whether an individual can actually disengage from their subjectivity when undertaking ethnographic research (Clifford 1982) which can lead to unjustifiable declarations of objectivity (Rosaldo 1989).There are also problematic links to colonialism (Denzin & Lincoln 1994; Manning 1995) which can instill a notion of cultural superiority and conceit by ethnographers (Boon 1982).
Undertaking ethnographic research is further complicated by the dependence upon one’s epistemological position. The adoption of a ‘naturalistic’ approach attempts to render the researcher metaphorically ‘invisible’ in order to minimise the effect of their presence and reduce their intrusion as a research ‘tool’ into the researched ‘picture’ (Hammersley 1983, 5). However, the value of this method can be challenged on the grounds of usefulness if what is only ever produced is unrelated detailed descriptions which cannot be connected to produce more generaliseable accounts, and hence an increased knowledge of human societies (Denscombe 1999, 72). Hammersley (1996) proposes that ethnography should be directed towards the generation of theory and hence contribute to knowledge using analytical tools, together with ‘thick’ descriptions, grounded upon detailed observation (598).
This research attempts to adopt a position close to that supported by both Hammersley (1999) and Woods (1979) by providing an account which can be used to inform current social understandings of disability. Although an attempt is made to analyse data objectively, the challenges made to an understanding of the causes of disability are influenced by my subjective experience as a blind disabled person. This raises the methodological question of how a blind person should conduct ethnographic research when a common sense definition of ‘observation’ may demand that observation is predicated on the ability to see events.
One common thread which runs through many discussions of ethnography is the demand placed on ethnographers that they should be visually aware of their surroundings and observe social interactions as they occur (Baszanger & Dodier 1997; Coffey 1999; Denscombe 1999; Gonzalez 2000; King 1996; Marshall & Rossman 1989). Additionally, ‘good’ ethnographic research is often found when the researcher minimises any perceived ‘differences’ between the researcher and the research subjects (Coffey 1999; Denscombe 1999; Hammersley & Atkinson 1995). The purpose of reducing ‘difference’ between the researcher and those researched is to engender trust and confidence on the part of research subjects. The identity of the researcher therefore needs to be managed. Strategies for managing identities include dressing the part and adopting the local vocabulary in order to reduce the status of researcher and become an ‘insider’ (Denscombe 1999; Hammersley & Atkinson 1995; Jorgensen, 1985; Mason 1996). However, the extent to which a blind ethnographic researcher can reduce their difference and manage their identity must be considered.
Any notion of a blind researcher appears in methodological literatures as a marginal consideration (see for example, Barnes 2003; Campbell & Oliver 1996; Oliver 1992; Zarb 1997), and absent from the majority of the rest. Coffey and Denscombe make no reference to how their advice affects researchers other than those who are sensorial and physically able. The ability of a blind researcher to adopt a ‘managed identity’ and ‘blend’ unobtrusively into and move around most research settings is severely restricted. In this research blindness is an integral component of ‘the self’ which cannot be ‘shaken off’ in order to adopt a managed identity complete with sight.
Arguably, the necessity of sight is unquestioningly accepted by many methodological authors and this leads to the verbs ‘to see’ and ‘to observe’ becoming conjoined to produce ‘objective’ observations. For example, when reflecting on her first encounter ‘in the field’, Bowen includes descriptions of how locals ran towards their vehicle shaking their fists, what the huts and adjacent working fields looked like and how muddy paths made travelling difficult (Bowen, cited in Coffey, 1999, 20). The issue that needs to be considered is to what degree sight was essential in making these observations? Whilst sight enabled Bowen to see natives shaking their fists, and the layout of huts it could be argued that interpretation, understanding and then observation occurred only when she was told that fist shaking was a traditional greeting and was informed of the social influences which determined the shape of the local environment. The fact that muddy paths make travel difficult does not depend on an ability to see the conditions. The experience of undertaking the research for this thesis indicated that research subjects (all of whom knew of my inability to see) compensated for my lack of sight by providing detailed descriptions and interpretations of both the physical environment and social interactions. So, any descriptions provided are not founded on my own subjective or ‘taken for granted’ interpretations of my own visual observations.
The ‘problem’ of a reliance on sight, which can produce an illusion of objective reality, is not completely ignored in methodology texts. For example Backer points out:
It takes a tremendous effort of will and imagination to stop seeing things that are conventionally ‘there’ to be seen. I have talked to a couple of teams of researchers […] and it is like pulling teeth to get them to see or write anything beyond what ‘everyone’ knows. (cited in Hammersley and Atkinson 1995, 92).
Here Backer expresses the difficulties for sighted researchers when visual imagery is unquestioningly accepted as representing objective reality. The problem Backer identifies is similar to one which has prompted others to suggest that most social anthropologists should consider reducing sight to a secondary status (Manning 1995, 264). The elevation of other senses is also stressed by Robins (1996) who argues that the dominance of the visual represents a drive to disembodiment and a retreat from experience, as the sense of touch is devalued in favour of the more powerful, intellectual, real, objective, detached visual world (Robins 1996, 29).
There appears to be a chasm between those who advocate caution when interpreting visual imagery and others who appear to privilege sight, coalescing the visual and observational. For example, Slack (2000) argues, ‘looking and watching should be embedded in all psyches of all researchers’ (10). So presumably for Slack, the concept of a blind researcher would be problematic, whereas for Backer, Manning, and Robins, the idea may appear less challenging. The question of the importance of sight for observation depends on the assumption that researchers observe social realities. However as Hammersley (1992) argues:
Justification offered for ethnography often involves the argument that it enables us to capture social reality more accurately than other approaches. On the other hand, it is intrinsic to ethnography that the people studied are viewed as constructing distinct social worlds. And if that idea is applied to ethnographers themselves it may seem that, rather than representing reality, ethnographic accounts simply construct versions of reality. (4-5)
What Hammersley seems to be hinting at is a kind of inevitable purblindness on the part of researchers.
Traditional conceptions of the research process appear to accept uncritically the idea that visual observation provides accounts which reflect objective reality. However, it has been shown that this assumption is problematic and that it is possible to argue that the visual does not necessarily provide accurate representations of events. Consequently, accounts provided by blind researchers can be regarded as valid as any other. For example, body language can be used by researchers as an aid to assist analysis but for a blind researcher such visual clues would not be available. As such it might be argued that they miss valuable information. However, body language can be learnt by individuals, hence any interpretations may be deliberately influenced by research subjects (Richardson 1996). The blind researcher may, in fact, gain more information from other methods such as interviewing where tone of voice may become more significant.
An inability to see does not therefore preclude researchers from conducting ethnographic studies and the emphasis on sight and observation in textbook prescriptions should be expanded to acknowledge that not all researchers have access to such forms of observation. Emancipatory disability research which is founded on the acceptance of social model principles (Barnes 1996; Barnes & Mercer 1996; Barton 1996; Branfield 1998; Kitchin 2000; Oliver 1992, 1993, 1997; Stone & Priestley 1996; Zarb 1992, 1996, 1997) supports the argument for not privileging or relying on the sense of sight as it could be regarded as reinforcing a model of personal deficit. However, personal experience could arguably indicate an inadequacy in the social model which disregards any consequences to impairment. This problematic relationship to the visual that is apparent in the social model has been recognised by Hughes (1999) who argues against formulations that promote occularcentric beliefs - such as 'to see is to know' -where a reliance on the visual creates a myth, a clouding of interpretation (160-61).
A detailed examination of emancipatory disability research is undertaken later in this chapter. What follows is a continuation of the discussion of methodological issues related to the participatory organisations.
The close contact that was established inside SMO allowed the time and access necessary to conduct an ethnographic study. However, the same level of access was not available at NDDP. Consequently the research carried out there conformed more closely to non- participatory observation (Jorgensen 1985). As a result, the methods of gaining data varied between the two organisations. As already discussed, one significant difference was the access to internal documentation. Also, there were many more opportunities for informal conversations in SMO which provided a depth of detail relating to individual and organizational practices. However, there were similarities in data collection between the two: notes of informal conversations and general observations were taped and recorded as a research diary and interviews were conducted with management, staff and clients in both organisations. The following section discusses issues relating to the interviews.
Research interviews
The semi-structured interview format was adopted. This provided sufficient structure to enable the collection of some standard information from a range of respondents and flexibility in terms of issues discussed with a diverse group of respondents within an organisational context (Hammersley & Atkinson 1983; Holstein 1995; Holstein & Gubrium 1997; Mishler 1986).
In NDDP eight of the thirteen members of staff were formally interviewed and most were formally interviewed on more than one occasion. These formal interviews were supplemented by informal interviews (what Van Maanen (1988) refers to as ‘corridor talk’) during visits to the organisation. Fifteen disabled clients were formally interviewed at various stages as they progressed through the programme. In addition, with the consent of clients, six interviews were observed between employment advisors and their clients.
In SMO eight of the 24 people employed in the organisation were interviewed formally. Informal discussions were conducted with the rest during the course of performing the role of Treasurer within the organisation. Such conversations were recorded in a field work diary. The selection of respondents for formal interviews was based on their position, role and function within each organisation, and ranged from senior managers to employees. However, occasionally interviewees recommended that particular individuals should be interviewed in order to follow up specific issues and so there was also an element of ‘snowball sampling’ (Mason 1996) to interviewee selection.
Respondents in both organisations were aware of my role as a researcher and therefore this knowledge was understood to constitute informed consent to use informal discussions as sources of data. In order to protect respondents all participants have been given pseudonyms. Given the uniqueness of each organisation and that both organisations are relatively small, it was decided not to identify the role each played in the organisation in order to further protect individuals. Individual respondents will be referred to as: Board Member; Senior Manager; Supervisor; Advisor; Trainer, or Clerical Assistant.
Whilst methodological texts are replete with advice on the process of interviewing, and how the identity of researchers and interviewees can be affected by a variety of characteristics such as gender, race, class, and age, rarely do they consider how the interview process is affected by the inclusion of disabled people. There is no advice offered to disabled researchers let alone researchers with particular forms of impairment. Using personal, experiential knowledge as a blind researcher the following section considers some of the issues that arose during the course of conducting interviews.
Disability and Research Interviews
In some instances, the combination of two people with different impairments attempting to communicate made the employment of a third party essential. For example, if spoken communication was a barrier to understanding the interviewee’s responses (hearing or speech impairment) then signers or, in some instances, advocates acted as ‘translators’. In such circumstances, a blind researcher who is more accustomed to accepting audible cues can reduce research ‘contamination’ by ensuring the views of the interviewee are obtained and not those of the interpreter or advocate. For example, insisting any audible sounds made by a person with communication difficulties are fully explored can involve presenting several spoken answers to questions for agreement or disagreement rather than accepting the views first offered by advocates. In such circumstances, traditional prescriptions would warn against ‘leading’ respondents by offering responses. However in the case of interviewing people with particular impairments this may be the only way of including their views in the research.
When two non-disabled people converse the tendency is for both to look and acknowledge each other by using visual gestures such as head nodding and eye contact. Such gestures are accepted as translating meaning such as approval or disagreement (King 1996, 184). If one is then to act as interpreter or advocate for a third person with communication difficulties then the learned response of looking towards the person speaking may persist. In this way, the disabled person can become marginalized as the researcher and advocate communicate. By listening for audible cues from the disabled person any visual responses involving the advocate’s body language are ignored. Of course, the body language of interviewees was also inaccessible to the researcher and some seem to regard this as a disadvantage that would produce impoverished research (King 1996, 184-85; Mishler 1986).
Mishler argues that the positioning of the interviewer and the establishment of eye contact are important in placing the listener in an advantageous position for monitoring verbal and non-verbal messages which the researcher can utilize to aid the construction of the ‘story’ (Mishler, cited in Richardson 1996, 185). On the other hand, McCracken (1988) offers an alternative analysis arguing that the interpretation of non-verbal communications can lead to tautology and that descriptions of gestures produced by the interpreter merely reinforce their own subjective opinions. However, what is accepted by all these authors is the importance of non-verbal communications whether as an aid to ‘story’ construction or as a distorting influence. In the case of some impaired people, both these positions appear unsatisfactory. For example, Mishler and King offer no analysis of how the body language of a person with involuntary body movements can be interpreted and McCracken would presumably have difficulty in accepting gestures to augment communication where understanding speech presents a barrier.
So far the problems caused by the lack of attention in methodology texts to issues of disability when conducting research have been discussed. It has been demonstrated how advice that is offered to researchers assumes that researchers are not disabled and therefore that they can conform to traditional methodological prescriptions. However traditional approaches to conducting research specifically on disability have not escaped the attention and criticisms of the disability movement and disabled academics in particular. These critiques and the prescriptions emanating from such critiques will now be discussed.
Researching Disability
As might be expected these methodological critiques of traditional research methodologies and prescriptions for how disability should be researched tend to have been generated by those who advocate a social model of disability (Barton 1996; Barnes 1996; Barnes & Mercer 1996; Branfield 1998; Kitchin 2000; Oliver 1992, 1993, 1997; Stone & Priestley 1996; Zarb 1992, 1996, 1997). Space does not allow for a detailed review of all the debates and so the discussion will concentrate on arguments which suggest that research on disability requires the adoption of emancipatory methodology. Gramsci’s concepts that were discussed in the preceding chapter will be used to analyse such alternative approaches to researching disability.
Emancipatory disability research
A number of problems have been identified with traditional approaches to researching disability. The first problem has been a tendency for research on disability to have been historically conducted by non-disabled people who had no experiential knowledge of disability and who therefore operationalised the claimed dominant medical model of disability which did not accurately reflect the experience of disability (Oliver 1992, 1993). A second and allied problem is that historically, in an attempt to conduct ‘objective’ research, disability researchers have tended to objectify and individualise disabled people, treating them as ‘data’ and produced findings which whilst benefiting the careers of researchers, did little to enhance the lives of disabled people (Barnes 1991; Hunt 1966; Finkelstein 2001; Oliver 1992). These problems were seen to be caused by the existing material and social relations of knowledge production.
The material relations of knowledge production are a result of the under-representation of disabled people within the academy and within funding agencies (Zarb 1992). This in turn has meant that disabled people have been unable to influence the research agenda: what kind of research is conducted and how it is conducted. The social relations of knowledge production have embedded within them unequal power relations in which researchers by virtue of their status and the methods they use are more powerful than research respondents.
In response, disabled academics (and some non-disabled ones) active in the disability movement have argued that traditional methods of researching disability should be abandoned in favour of emancipatory methodology (Barnes 1996; Barnes & Mercer 1996; Stone & Priestley 1996). Emancipatory research aims to change both the material and social relations of knowledge production by actively involving disabled people at each stage of the research process – from setting the research agenda, through to analysis of data and publication of findings. This approach therefore requires the passing of control of the research process to disabled people. Non-disabled researchers, it is argued, should put their skills at the disposal of disabled people in order to help them conduct research which produces findings which they can use for their own emancipation (see for example, Barton 1996; Barnes 1996; Barnes & Mercer 1996; Branfield 1998; Drake 1997; Duckett 1998; Humphrey 2000; Kitchin 2000; Moore et al 1997; Oliver 1993; 1997; Rioux and Bach 1994; Stone & Priestley 1996; Zarb 1992). The dissatisfaction with traditional research methodologies in addition to questioning ‘who’ can produce legitimate disability research also challenged both positivist and interpretive traditions because of their tendencies to focus on individual impaired people as objects of research which, in turn, reinforced the traditional medical model of disability (Barnes 1992; Oliver 1993).
For the purposes of this thesis and using Gramsci’s concepts discussed earlier, traditional research methodologies can be seen to have acquired the status of common sense. They are uncritically absorbed by the non-disabled academic community who can be seen as traditional intellectuals. These intellectuals and their research methodologies serve to reproduce what have been considered to be hegemonic common sense understandings of disability as detailed in the medical model of disability.
The critique of the adoption of traditional methodologies for researching disability constitutes a challenge by organic intellectuals who have developed an alternative good sense understanding of how research on disability should be conducted and who are seeking to make such an understanding common sense. In other words, organic intellectuals want to overthrow hegemonic understandings and replace them with a new approach to research which supports a social model of disability and which removes the unequal relationship between researchers and researched.
This challenge offers an emancipatory alternative in which disabled people can be promoted as active participants and knowing subjects, in an attempt to move the focus away from considerations of individual impaired people, and on to the disabling effects in the social world (Barnes 1997; Oliver 1992; 1993; Zarb 1996). For these organic intellectuals, since they believe ‘disability’ to be a collective experience caused by the way society views impaired people, shifting the focus of research to reflect this understanding represented ‘good sense’. Ultimately, they argue, this can inform policy so that the historically oppressive relationship between impaired people and a disabling society can be altered. However, although this good sense’ was promoted as representative of the experiences of a homogeneous group it could be argued that one principal barrier which prevents emancipatory research gaining wider acceptance as ‘common sense’ is an internal inconsistency which emerges from the move towards a privileging of the knowledge of the disabled experience.
If the concept of disability as a homogeneous phenomenon is accepted, then calls for the privileging of experiential knowledge appear contradictory. By drawing a comparison with emancipatory gender research, Barnes (1992) argues that women are in a better ontological and epistemological position to research other women. His argument is predicated on the assumption that an empathetic relationship based on life experiences between researchers and researched is more likely to generate valid research. Hence, women are better placed to research women and people with impairments are better placed to research other impaired people. Support for Barnes’s position is produced by Kitchin (2000) who found that disabled people felt more at ease when discussing disability with researchers who were themselves disabled.
However, if the arguments over the privileging of experiential knowledge are pursued, then the ‘homogeneous group’ claims for disability researchers become inconsistent. If the comparison with emancipatory gender research is used then it would seem inconsistent to argue that a white woman with a high disposable income would have sufficient empathetic life experience to research poverty amongst unemployed Asian women. In this case, empathetic research would be more easily achieved if the research were to be conducted by demographically similar peers. Similarly, there would appear to be little in common between a white visually impaired female academic and a black male unemployed wheelchair user. It can be seen that although both may face disabling societal barriers the fundamental differences in their life experiences, which includes their different experiences of impairment, implies that the ‘homogeneous group’ concept of disabled people researching other disabled people is problematic.
What appears to be more appropriate would be research within impairment specific groups. So, for example, research into the disabling aspects associated with lack of vision could be conducted more appropriately by and with people with visual impairment. However, this is politically and theoretically dangerous for advocates of the social model because it might reveal a link between impairment and a disability which may be specific only to one impairment group thus weakening significantly their critique of an individualistic medical model.
The ‘homogeneous group’ concept faces perhaps its most severe challenge in the case of people with learning difficulties. Although some have sought to include learning impaired people in the research process (Walmsley 2001) it becomes difficult to consider how people with severe learning difficulties could engage in the research process without the participation of an advocate/researcher. Although this third person could also be a disabled person (perhaps a wheelchair user) if emancipatory research is predicated on experiential knowledge, then again, the question arises of how homogenous the two life experiences are. It would seem difficult to support a position that states that simply having an impairment of one sort or another means that a disabled person is better placed to engage in research involving learning impaired people than perhaps a non-disabled friend or advocate who may have some knowledge of the barriers learning impaired people face.
The principal inconsistency at the heart of emancipatory research is the claim that experiential knowledge gives any disabled person a privileged position to carry out any aspect of research into disability. A paradox appears when it is acknowledged that to be included within the group ‘disabled’ requires one to have an impairment. So, although disability can be represented as a social construct, group membership is dependent on the acceptance (albeit often consigned to silence) that disability involves a direct relationship between the impaired body and the disabling effects of society. Hence, when calls are made for research to be based on emancipatory disability principles, in reality the experience of disability required by the researcher depends on how impairment and disability interrelate in the social world. For people with different impairments this interaction is different, hence the barriers faced by learning impaired, visually impaired, and mobility impaired can all be different. It would be incorrect to imply, however, that similar criticisms have not been raised by others or resulted in the reconsideration by some authors of their position in respect to emancipatory disability research.
Perhaps the internal inconsistency in emancipatory disability research is crystallised most effectively by one of its strongest proponents. In an article attacking a non-disabled researcher who rhetorically questioned his role in disability research (Drake 1997), Fran Branfield (1998) stated, ‘the equation I have an impairment, therefore I am disabled, must be dismantled’ (401). This appears contradictory, because if any links between impairment and disability are severed, then why should people with impairments have any need to call on experiential knowledge when researching disability?
The problem of defining disability within a ‘homogeneous group’ concept has been challenged by Duckett (1998) and Humphrey (2000). Duckett contends that the proposed binary opposition of disabled/non-disabled is too simplistic because disability can be transitory, as non-disabled people can become disabled and vice versa. This presents a complex/fluid, rather than definite/static relationship (626). If only disabled people are legitimately able to conduct emancipatory research, many researchers may find themselves in an invidious position. For example, a person with a broken leg could face disabling barriers during a period when mobility was only possible with the aid of a wheelchair. If only disabled people should conduct research on disability then this person would be accepted as a legitimate researcher. However, once the broken leg has healed and they have no further experience of disabling barriers, the legitimacy of any research they might conduct on disability could be questioned.
Moreover, by attempting to restrict research on disability to only disabled researchers leaves many non-disabled allies in an uncertain position. As Humphrey (2000) argues, ‘questions of who has the right to conduct research on disability leaves the non-disabled researcher in limbo, suspended over both ally and enemy camps, at best clutching only a temporary visa’ (75). Similarly Duckett (1998) argues that the tendency to attempt to restrict research to only those with accredited impairments can be detrimental to the disability movement as it can serve to isolate other potentially more powerful allies. Duckett’s call for the widening of support from other groups echoes Gramsci’s analysis of hegemony. This becomes an important issue because, if emancipatory disability research is to gain wider acceptance throughout the traditional research community, then it must be accepted as common sense.
As the debate over who can legitimately claim to conduct disability research continued, two of the most prominent authors in the disability movement, Colin Barnes and Mike Oliver, drew back from their earlier calls for the privileging of experiential knowledge and offered a more conciliatory approach to the role of non disabled researchers:
We are not suggesting that only disabled people can or should do disability research, and we do not believe that an accredited impairment is a necessary pre-requisite for doing disability research. (Oliver & Barnes 1997, 812)
One idea which has remained constant throughout the debates on emancipatory disability research is the a priori acceptance that the social model of disability provides the ideological canvas on which emancipatory disability research should be laid out (Barnes 2003). However, as has been demonstrated, one consequence of accepting the social model is that any discussion or consideration of how impairment can affect the ability to engage in traditional research methods is ignored.
One question which emerges from this discussion is whether the research carried out for this thesis can be considered emancipatory. The answer is ‘perhaps’. Certainly by one criterion the control of the social and material relations of research production was in my hands and it may be possible to find emancipation through increased work opportunities as a result of conducting the research. Whether this research will help to emancipate disabled people more broadly can only be evaluated after the research has been completed (see also Zarb 1992). However, while seeking the views and opinions of many disabled people, it was decided to deliberately avoid allowing control of the research to be extended to include other disabled people for two primary reasons.
Firstly, there was a practical restraint which meant the majority of disabled people interviewed could not be contacted again. There were several reasons for this, including the confidentiality at NDDP that ensured personal details were not made available; the lack of additional time and resources that curtailed opportunities to follow up and disseminate information, and because the majority of respondents from SMO and some from NDDP were learning impaired there was some difficulty associated with ensuring that their views were accurately represented and not those of advocates. So, in practical terms, the only disabled people who could have been included in the analysis of the data were the politically committed social model senior management team of SMO. This led to the second principle reason for retaining full control. As members of the senior management team at SMO were all mobility impaired, the political decision was made not to allow any interpretations to be directed by this impairment specific group. After all, why should their views of disability be given any greater significance than those of the visually impaired researcher? However, perhaps the most contentious reason (which may draw criticism from advocates of a social model of disability) is an agnostic opinion on whether the social model can be usefully employed to describe all disability. It is up to the reader to determine in the following chapters how appropriate the chosen methods were.
This discussion demonstrates that this research does not claim to adhere to the emancipatory disability research paradigm nor to be compliant with a social model of disability. Instead it is closer to the views of Shakespeare (1996), a committed advocate of disability politics, who, when reflecting on whether his research on disabled sexuality was emancipatory, argued:
To be honest I don’t know and I don’t really care. I am a pluralist, and would rather follow my own intellectual and ethical standards, rather than trying to conform to orthodoxy. I don’t follow recipes when I cook, and I’m not keen on following imposed rules when I research. (118)
The remainder of this chapter discusses some of the issues that impairment can raise for establishing access to research sites. Neither traditional methodological texts nor those emanating from methodological prescriptions advocated by disability researchers tend to consider this issue.
Accessing Research Organisations
Four organisations were approached with a view to becoming research participants. These were: Guide Dogs for the Blind Association (GDBA); Henshaw’s Society for the Blind; a Social Model Organisation (SMO), and the government pilot ‘New Deal for Disabled People’ (NDDP).
Initially, both GDBA and Henshaw’s agreed to be participants in my research. Both organisations appeared enthusiastic with the initial research proposal, which explored how government policy may affect the operations and funding of many ‘Not for Profit’ (NFP) organisations. This research could have had practical implications for the organisations as funding for NFPs by local and central government had shifted towards a concept of ‘Comprehensive Best Value’ (CBV) (Forbes 1997; ISRM 1998). These changes in funding can be summarised as a move away from grants to a more competitive contract culture (Charity Commissioners 1998; Compact 1998). This funding drift towards contracts in some areas of the NFP sector had been in evidence for some time (Fielding & Gutch 1989; Gutch 1989). The proposed research was aimed at reviewing and building on earlier critiques at the changes in public sector financing, and determining if changes in funding could negatively affect the relationship between charities for disabled people and their clients.
However, once the research commenced both organisations were reticent to grant access. Both offered comparable explanations for their hesitancy: they were in the process of assessing government policy and restructuring internally hence any research would be premature as new systems would not have settled down. After several months, influenced by time pressures it was decided that alternative organisations should be sought. This experience identifies one major difficulty with the emancipatory research paradigm: why should organisations who control access to potential research sites relinquish their control of the research process? Simply arguing that research into disability should be conducted using emancipatory research methods is somewhat idealistic if the power differential between researcher and host research organisations remain heavily one sided.
As an active stakeholder in both organisations, I had access to several senior employees who suggested during informal conversations that a significant factor in the decision not to participate was due to the perception that such organisations feel threatened if service users become critical of their provision. Both organisations did commission research and have altered their operations as a result. Perhaps the reasons for paid consultancy research can be found in the ability this gives the contracting organisation to control the research agenda which may (for example) exclude any necessity to consider the relationship between the charity and its clients. My status as a disabled researcher and a service user did not therefore in this instance facilitate access.
The maintenance of control of research is not restricted to traditional charities for disabled people. Mike Oliver was also denied access to the Greater Manchester Coalition of Disabled People despite wishing to adopt emancipatory research (Barnes & Mercer 1997: 18). Perhaps Oliver’s experience indicates that whilst within the elite academic coteries emancipatory disability research may represent good sense nonetheless, even for committed advocates of the social model, the concept of emancipatory disability research has not been uncritically accepted as representing common sense, and consequently it has not become hegemonic.
The struggle for the control of research also appeared during initial negotiations with SMO. The organisation proclaimed an alliance to the principles of the social model and those disabled people in positions of power, all having similar mobility impairments, sought to control the research. This could be regarded as organic intellectuals seeking control of some elements of emancipatory disability research although as a disabled person with a different ontological understanding of disability this researcher wanted to avoid simply reinforcing a social model ideology. From a personal standpoint, following an emancipatory research agenda could potentially reinforce oppressive power relations inside SMO, a situation it was important to avoid. Hence it could be argued that the battle for the control of research was as evident in organisations run and controlled by disabled people as elsewhere. Ironically, of the four potential participating organisations, only NDDP did not attempt to influence the research. This was ironic because as a high profile government initiative, NDDP could be politically damaged if the research findings were critical. So perhaps one issue which could restrict a wider acceptance of emancipatory disability research, is the potential damage organisations face if control of the research process is relinquished to disabled people.
Gaining Access to NDDP and SMO
This section considers how access to NDDP and SMO was negotiated and the role impairment played in achieving access.
Personal contacts together with an element of chance can combine as effective methods of gaining access to organisations (Buchanan et al 1986; Denscombe 1999; Hammersley & Atkinson 1983; Jorgensen 1989). In a search for funding and organisations willing to participate speculative contact was made with a social services manager who was a personal acquaintance. Although she expressed a personal interest in the research proposal it was made clear that her department had no budget which could provide any funding for any research projects. However, earlier that day she had received a request from the local pilot for NDDP who were recruiting for seconded staff from social services. It was agreed that the manager should arrange an interview for a post as a personal advisor on the project. The application for a post was unsuccessful primarily because the pilot had agreed in its bidding process that all advisors would be seconded and would return to their original place of work when the project ended thereby not leaving a legacy of unemployed people in the wake of an employment initiative. However, after several discussions involving senior management, NDDP agreed to become a participatory organization in the research, leaving the details of research questions to be determined by the researcher. One factor that assisted in gaining access was my blindness.
As NDDP had only recently been launched , management were sensitive to any negative publicity or ‘leaks’ from inside the organisation hence one access barrier any researcher would have faced surrounded the problem of ‘accidental’ exposure to sensitive information (Buchanan et al 1986, 57). The issue of security had been raised by senior employment managers, although they accepted the argument that unless a staff member actually gave me a document or read its contents it was not possible to independently obtain covertly any documentary information. So, whilst it might be expected that blindness would be a barrier to conducting research because it eliminates the visual content of any observations (Richardson 1996; Slack 2000) in this case impairment assisted in gaining access. It was the consequences specific to blindness which assisted access, because other disabled people (for example, wheelchair users) would have faced the same barrier as any other sighted researcher.
The negotiation of access also determined to some degree which research methods could be used. During negotiations, management stressed that any research would only be allowed with minimal disruption to the organisation which effectively determined the role of a non-participatory observer (Jorgensen 1989). A timetable was produced which indicated when and for how long interviews would be conducted. It was agreed that all staff and clients would be invited to participate in the project and, with all-party agreement the observation of client interviews was allowed, as recommended by Burgess (1999, 257) and Richardson (1993, 103-4). In NDDP the position of the researcher within the organisation was determined by the level of access. In SMO, a more detailed and close contact over a longer time scale was permitted which enabled an ethnographic study to be conducted.
The introduction to SMO was made through a former supervisor who suggested the organisation was an exemplar of how an organisation run and controlled by disabled people and implementing the principals of a social model of disability operates. Initially it was not intended that SMO should become a participatory organization but this occurred by chance when, during an interview with the CEO, I was invited to join the board of directors as Treasurer. A principal reason for the invitation was that the former Treasurer had resigned and SMO were struggling to meet their commitment to have a majority of disabled people on the Board of Directors. Also, the role of Treasurer appeared suitable because of my business history and impairment, which due to its severity, incontrovertibly confirmed my status as a disabled person. This identifies a paradox for SMO.
Although SMO defines disability as a social construct, the criteria for group membership rests on individuals having an accredited impairment. The paradox here is that this can only be interpreted as reinforcing an individualistic medical model. The reason why it is important to have raised the issue of my status as a disabled person with SMO but did not apply similar considerations to NDDP is because at NDDP my disabled status was never in doubt. For SMO, if impairment does not disable, then disability itself must be a fluid definition capable of assignment when disabling barriers exist. I never self-defined as disabled nor was I asked which barriers disable a blind person therefore impairment was the only group identifier. Indeed, if disability is not linked to impairment, then it can be argued that during my initial visit to SMO, I was not a disabled person. I arrived at the offices via taxi (paid through travelling expenses), was met at the front door and escorted to the CEO’s office without any requirement to read or ‘sign in’ a visitors’ book and the interview was taped as agreed. So, no disabling barriers were present, hence according to a social model analysis, I was not a disabled person because I was inside an enabling environment (Swain et al 1993). Here again SMO becomes trapped within a paradox created by the social model. If the environment and attitudes associated with the operations of SMO was not disabling, then it follows that the organisation could not be run and controlled by disabled people. Highlighting this paradox illustrates how the two organisations inform the research questions.
One significant difference between the organisations which affected the methods of conducting research was their approach to the question of who controls the research. NDDP did not demand any control over research questions whereas SMO wanted total control of the process. The CEO of SMO wanted all research questions to be vetted by a senior management team led by her, with the subsequent individually named responses also being filtered through her. This offer was declined for two primary reasons. Firstly the methods adopted were inductive rather than deductive and therefore research and interview questions evolved during the research process. Secondly, there was a concern about the potential for ‘research contamination’ (Miller & Glassner 1997, 126-27) since the veracity of responses may be affected if staff were aware these would be read by the CEO. The problem faced at SMO was how to conduct any research once the offer from the CEO had been rejected
No members of SMO were directly approached for interviews rather it was decided to use the role of Treasurer to gain an understanding of how the organisation operated. Approval was sought and granted from the CEO to speak directly to staff. The Finance Manager was asked to act as gatekeeper and arrange these meetings. It was during these discussions that the staff began to express concerns about the social model of disability and its use as a guiding principle for an organisation in a competitive market. The sampling method became a ‘snow balling’ exercise (Mason 1996, 103-4), as staff began to request interviews to express their opinions to a company director with confidentiality assured.
Given that the research was overt, it has been assumed that agreement to participate in the research represented informed consent (Denscombe 1999, 109; Mason 1996, 166-67; Punch 1986, 35-6). On an individual basis, all participants were informed in the first instance that my status as a researcher and the nature of the research and that their contributions were being recorded, and might be used in a published form, albeit with anonymity guarantees. Their continued participation was understood as informed consent (Denscombe 1999, 109: Punch 1986, 35-6).
Generaliseability
The ways in which validity has been ensured through the use of methodological triangulation described as the collection of different forms of information from different people, at different levels, at different times and, in different places has already been discussed (Hammersley & Atkinson 1983, 181; Marshall and Rossman 1989, 146; Mason 1996, 149). The topic of the generaliseability of the findings will now be explored.
SMO claims to be unique as it is the only commercial employment focused organisation run and controlled by disabled people and operating to the principles of the social model of disability. Since the Government has not committed itself to a long term future for NDDP (Walker 2000) it may appear that any direct generaliseability at an empirical level may be difficult to establish. However, as Marshall & Rossman (1989) argue, in the case of qualitative research generaliseability may be more appropriate to how models or theories are applied which can then influence policy generation or model development. This research addresses the problematic relationship between disabled people and work. Within this broad framework, the concepts of models of disability are applied both from an historical and contemporary position. Based on the everyday actions of those involved in the employment of disabled people, the research will attempt to determine whether or not these models present an accurate representation of disability or whether amendments or new understandings are required. It is this more theoretical application of models that can produce the generaliseability of the research, because altering models could affect understandings which can then apply to policy and in other context. The following chapters evaluate the nature of the models of disability that have underpinned the employment of disabled people historically and empirically in contemporary organizations.
Chapter 4
An Historical Reflection on Disability (I)
‘It is only in recent years that the issue of disability has been transformed from a purely medical problem to a political one, in Britain, at least. Central to this transformation has been the rise of the disability movement.’ (Oliver and Zarb 1989, 221)
The epigraph to this chapter makes two claims that are symptomatic of the ones made by writers who support a social model of disability. Firstly, it claims that historically disability has been seen as a medical problem rather than a social one. The second claim is that the change from a medical to a social problem has been achieved through political action by the disability movement, a phenomenon generally regarded as existing only for the last 30 years. This chapter will challenge the accuracy of both these claims.
Social model theorists portray disability purely in terms of two opposing models. They suggest that traditional intellectuals understand disability as a medical and individual problem. The dominance of medicine and the conception of disability as an impairment has, they argue, been the cause of oppression for disabled people. According to Oliver (1990) this served to reinforce an individual model of personal tragedy. This view is presented in opposition to the emancipatory potential of the organic understanding of disability contained within the social model. If it can be shown that historical evidence does not support such a belief then the philosophy of opposing models at the core of the social model becomes unsatisfactory.
Claims for a historical continuity of oppression
Elizabeth Bredberg (1999), an academic historian, has criticised some authors who write on disability for constructing historical accounts which proclaim to expose evidence of disabling social practices without sufficient regard for the sources they cite. She calls into question the use of ‘prevalent proof’ as a reliable source for historical writing (192-93). This practice involves making a claim that is unsupported by empirical evidence but which then becomes regarded as factual and is repeated by many other authors because it supports a particular ideology.
Reviewing Colin Barnes’ ‘A Legacy of Oppression’ (Barnes 1997), Bredberg comments on some factual errors and issues cautions about his use of historical texts to support present day claims of disabling practices. Her criticisms include the inappropriate use of biblical texts such as the Book of Leviticus and Barnes’ spurious claims about the infanticide of impaired children in ancient Greece which he bases on Plato’s Republic. Bredberg points out that there is no actual evidence to support Plato’s claims that infanticide was routinely practiced by the state as Plato’s Republic was an idealized and imaginary one (197-98). Hence claims of evidence of disabling practices from historical sources are dubious and ideological adopting a politically advantageous slant that effectively labels disabled people in the pre-1970s disability movement as merely reactive recipients of oppressive practices.
A consideration of Finkelstein’s (1981) claims that disability is principally the product of industrialisation further supports Bredberg’s criticism of ‘prevalent proof’. Finkelstein asserts that prior to industrialisation disabled people were included in work in a predominantly agrarian society but were excluded as industrialisation occurred. Apart from the claim itself there is little supporting evidence in his account and no explanation of why this was the case. Similarly, Oliver’s (1990) historical account is heavily influenced by the role of institutions and their increased function as a means of state control. Oliver draws here on the work of Foucault (amongst others) to exemplify the relationship between individuals and institutional practices. It could be said that this style of historical review allows an impression to emerge whereby disabled people are largely regarded as passive recipients of oppressive practices which they unquestioningly accept. Such historical accounts portray disabled people as tragic victims which helps to add weight to claims that the social model of disability is a new one that offers emancipation from oppressive traditional intellectual understandings of the causes of disability. In other words, these accounts support a political ideology of the present by selecting secondary source data from the past and interpreting this against a discursive backcloth of present day understandings.
This chapter challenges the claims made by Barnes (1997) and others by examining how, historically, some impaired people have organised themselves to resist the traditional intellectual perceptions of disability and have actively influenced legislation with the aim of achieving economic emancipation and social change.
This chapter addresses a number of themes in order to answer the following questions:
• Has legislation always reinforced a singularly medical approach to disability?
• Is the organisation of politically active groups of disabled people fighting for emancipation through social change a new phenomenon?
• How, in practice, did organisations engage disabled people in paid work?
• Was disability overcome by treating impairments (a medical approach) or by changing attitudes and environments (a social model approach)?
Legislation will be used as a benchmark for determining traditional intellectual formulations because dominant understandings of the causes of disability are likely to become embedded in statute and may be translated into policy. An example of how legislation can influence the way traditional understanding is determined can, perhaps, best be seen in race and gender equality legislation.
If inequality in organisations between white males, women and ethnic minorities was biologically determined (that is, if white males had some biological superiority which made them more suitable employees than the other groups) then legislation on the grounds of sex and race discrimination in employment could not have been introduced. Although traditional formulations of gender roles were based on biological determinism with the rise of the second wave feminist movement, such stereotypes were challenged and alternative reasons provided for the under-representation of women in employment. These included the failure to apply meritocratic principles in recruitment and promotion decisions. The passing of the Sex Discrimination Act (1970) and the Equal Pay Act (1975) was therefore a shift in understanding generated by organic intellectuals in the feminist movement. Whether the relevant legislation has succeeded in overcoming discrimination is a discussion outside the scope of this research. However, what is evident is that legislation could be introduced based on the understanding that, in these cases, discrimination was structurally and ideologically created rather than biologically determined.
Despite the claims of social model theorists, the same kind of argument is difficult to apply to disabled people. Whilst there is no doubt that historically medical definitions did inform understandings of disability, it is also the case that some social causes were also acknowledged. The Disability Discrimination Act (1995) requires that access to buildings is improved, and employers are expected to make reasonable adjustments to include impaired people in work (Doyle 1996a, 1996b, 1996c; Gooding 1996). If disability was thought only to be caused by an individual’s impairment it would surely be logically inconsistent to suggest disability could be overcome by any means other than correcting deficits in the impaired body.
Earlier chapters discussed the idea that the term ‘disability’ has inherent definitional problems depending on the position one takes regarding its cause. Hence when reviewing historical documents, it is not possible to determine definitively the meaning of the term. However, from as far back as the Elizabethan Poor Laws of 1601 legislation has generally relied on a common group characteristic of specified impairments as the criterion for determining those who fall within the remit of the Acts. This could be used to argue in support of the claim that disability has always been viewed as a medical problem (Finkelstein, 2001). However, on the other hand, it can also be argued that using impairment as a group identifier merely represents a practical means of determining group membership. To avoid imposing present day definitions onto uncertain historical meanings as far as possible the stable identifier of impairment specific groups as constituting disabled people will be used.
The chapter commences by reviewing one such impairment specific group - the blind -and examines how the attendant disability experienced by the blind was viewed from the beginning of the last century. The analysis is restricted to the blind for a number of reasons: the researcher has a personal interest in this specific group; access to the records of Henshaw’s Society had been negotiated, and the first organised trade union of disabled people was the National League of the Blind (NLB) founded in 1899 (Yates 1999). Certain legislation passed before this date has been reviewed because it can provide an insight into how traditional intellectual formulations of disability were influenced by the State before any influence was possible from the NLB. The State is today cast as representative of traditional intellectual formulations of disability.
The politics of disability
In the early 1870s widespread economic depression caused rising levels of unemployment and, as the effects of the depression eased, the economic imperative for the State was to reduce levels of unemployment across the working population (Jones and Novak 1999, 118). This drive affected blind people in addition to non-impaired unemployed workers. From the time of the Elizabethan Poor Law of 1601 the State had defined blindness in relation to the ability to perform work (HMSO 1951) and subsequent administrations had continued to regard all disabled people in relation to their ability to engage in paid work (Beveridge 1906).
In 1886 a Royal Commission entitled, A Report on the Blind and Dumb (Wagg 1932, 63) investigated the circumstances in which blind people lived. The Commission interviewed 6,000 blind people and found that a lack of education and training resulted in many being unable to find work whilst those in work had predominantly low status and low paid jobs. Reporting in 1889, the Commission recommended compulsory education for blind children between the ages of 5 and 16 in either schools or special institutions. These recommendations became law in the Education of Blind and Deaf Mute Children (Scotland) Act (1890) and the Elementary Education (Blind and Deaf Children) Act (1893). Additional recommendations were aimed at increasing the incidence of blind people in the workforce. Here, a social rather than medical approach is obvious as the remedies suggested were not related to solving the problem of impairment itself, rather to improving work opportunities through education and training. Although these measures were aimed at improving the social conditions under which blind people lived it was also the case, however, that medical interventions were being researched to prevent or correct many forms of visual impairment (Wagg 1932, 180-84).
The Commission’s recommendations included:
• Schools should provide training for blind people between the ages of 16 and 21 who wished to learn a trade. This did not directly translate into law, although under the Secondary Education Act (1920) local authorities were asked to supply education other than elementary.
• To ensure work for this newly-skilled blind population workshops were to be established in every large centre of population, which did not already possess such a facility. The committee urged that these were supported by private charity rather than through state funds.
• For people blinded between the ages of 21 and 50 training was to be supplied by the schools with the person either gaining employment from home working or in the workshops of the institutions. The implication of this was that for those over the age of 50, training for employment was not considered necessary.
The Blind Persons Act (1920) reinforced a definition that related impairment solely to the ability to work. The Act defines a blind person as, ‘to be so blind as to be unable to perform any work for which eyesight is essential.’ Under the Old Age Pensions Act (1908) the retirement age for a blind person was reduced from 70 to 50 and duties were placed on local authorities to provide workshops, hostels, homes or other suitable unspecified provision for the benefit of the blind. Although the obligation was on the local authority to provide workshops and accommodation many met their duties by sub-contracting the provision to established charities (HMSO 1951).
Thus, three strategies were employed by the state. The first was the use of medical intervention to prevent or cure the condition, an approach supported by some blind organic intellectuals (The New Beacon 1950, 88). Secondly, increased opportunity was provided for education, training and work and thirdly, the acceptance that as blindness increased in the general population in relation to age (Dodds 1993; Duckett and Pratt 2001; Henshaw’s 1928) reducing the age of retirement also reduced the need for the provision of training and employment places for those acquiring blindness in later life.
The increase in education and training coupled with the compulsory expansion of the workshop sector increased the employment rate of blind people (HMSO 1951). However, the arbitrary retirement age was set to fall once more, this time in line with a general reduction across the working population. The Old Age Pensions Amendment Act (1936) brought retirement age down to its current level of 60 for women and 65 for men, although this is currently under review. The Blind Persons’ Amendment Act (1938) lowered the age at which blind people could receive the old age pension to 40 years. Whilst the qualifying definition of blindness expressed in the Blind Persons Act (1920) remained the same, section 2 of the Blind Persons Amendment Act (1938) contained the following addition:
In determining in the case of any blind person whether or not or to what extent to provide financial assistance under the preceding conditions the council take into account not only the needs of the blind person but also the needs of any members of the household of which the blind person is a member, who are dependent on him.
From these legislative definitions it is proposed that, historically, a three stage model of disability can be discerned:
• Impairment is rooted in sensory lack
• Loss of work opportunity results from the consequences of impairment (the necessity of eyesight for certain jobs)
• Social disadvantage is recognised through the provision of financial support for those incapable of work.
This model bears a striking resemblance to the socio-medical model framed some 60 years later (WHO 1980) but which social model adherents classify as a medical model. The present legislation in the form of the Disability Discrimination Act (1995) can therefore be argued to represent a historical continuity in the understandings of disability. In other words, it has been consistently recognised that there are some consequences to impairment which disable; that disability can be reduced by altering social factors including improved education, training and work opportunities, and that financial assistance should be provided for those who cannot work.
Traces of socio-medical models can be found in other legislation including The Blind Voters Act (1933). This was effectively an amendment to Section 26 of the Ballot Act (1872) and was inserted into this Act as Section 26a:
the presiding officer shall require the voter to declare orally whether he is so incapacitated by his blindness as to be unable to vote without assistance and if he is satisfied that the voter is so incapacitated a companion will be allowed to assist.
The Blind Voters Act (1933) determines incapacity clearly within medical discourse: it is the impairment which does not enable the individual to vote as others do. However, the remedies for overcoming the consequences of impairment lie in social responses: allowing a helper to assist. Moreover, the impairment is not related to any medical or work-based criteria; in effect it is self-defining. The disabling barrier for the blind voter is the requirement to read a document and place a cross in the appropriate voting box. Considering the date and available technologies, it would be difficult to imagine any other method that could allow all eligible blind people to exercise their democratic rights.
Braille was invented in 1828 and first introduced in the UK in 1868 (Wagg 1932, 16) and would appear to have offered one solution which could have provided equal access to the ballot box. However, this would have required all blind voters to read Braille, a situation which does not even pertain in the present day. Out of an estimated visually impaired population of 1.5 million in the UK today there are only approximately 10,000 Braille users. According to the RNIB (1999) reasons for the low usage of Braille include:
• The reluctance of elderly recently blind people to learn a new skill
• The limited availability of Braille material
• The bulk, size and cost of the material
Hence the social changes allowed under the Blind Voters Act (1933) could be regarded as a pragmatic solution to the problem of maximising the number of blind people enabled to participate in the democratic process.
Two principles have emerged from this examination of legislative definitions in relation to models of disability. First of all, ‘disability’ as a term was not present in legislation during the period examined but ‘impairment’ - a medical criterion - was the word used to determine qualification under legislation. Secondly, when remedies to reduce disabling effects were sought there was no predominance of medical influence, instead definitions revolved principally around the ability to work. In this regard, when it was recognised that many blind people were excluded from work due to the lack of social provisions, social and structural changes were attempted such as the provision of education, training and workshops intended to improve employment opportunities for blind people. Political and legislative actions were, to varying degrees, aimed at the removal of structural barriers.
As discussed at the beginning of this chapter, many present day historical accounts of disability portray disabled people as tragic victims of oppressive medical practices (Finkelstein 2001; Barnes 1997; Oliver 1990) and state that the current disability movement was instrumental in changing this situation. But is this actually the case? Have disabled people historically been passive recipients of dominant discourses? In the following section it is suggested that such a view of history cannot be sustained by illustrating how blind people were proactive in changing the social environment.
Disabled people as victims of medical discourse
It would be incorrect to imply that legislation was the sole instrument that influenced the lives of blind people. Blind people themselves effected social change through political activity and by promoting educational provision. In other words, they fit Gramsci’s notion of organic intellectuals who generated a form of good sense. Blind people could be assisted to engage in society not by attempting medical interventions to cure impairment but by altering social conditions to allow impaired people greater social inclusion in society. In effect, such people constituted the first activists in an embryonic disability movement.
In 1791, Edward Rushton, a blind poet, founded the first teaching college for the blind named The Liverpool School for the Indigent Blind. This was 79 years before universal primary education became mandatory under State control through the Education Act 1870 (HMSO, 1951). It can be argued that some blind children were given access to education before many non-impaired peers received equal access. Hence at least some of the origins of segregated schooling for the blind was initiated by blind people themselves and were not a result of any oppressive medical interventions seeking to ‘correct’ impaired bodies.
Today, segregated education is not considered acceptable (Finkelstein and Stewart 1996). However, these earliest schools promoted by and for the blind should be considered in relation to educational provision generally, when, with no State educational system, many non-impaired children relied on the Church (Barnes 1997) or charity (Henshaw’s 1996). Blind people in this era could be considered as proactive in the development of education and training geared towards improving their employment opportunities.
In 1872, another blind man, Francis Campbell, opened the first academy of music for the blind, providing musical training and advanced education aimed at providing employment opportunities in music, the professions and other ‘white-collar’ occupations. The academy produced successful graduates of the Royal Academy of Music and the Royal College of Organists, providing work opportunities for blind people in both performing and teaching. In 1887, typewriting was added to the curriculum followed by shorthand in 1898. In 1895, the college began training teachers and was validated as a teacher-training establishment with some pupils progressing to gain university degrees at both Oxford and Cambridge. Between 1884 and 1934, a significant number of blind people graduated from universities, entering several professions such as law, teaching, and the clergy (HMSO, 1951). So, opportunities for blind people were available in many occupations where the barriers to participation in work must have been either significantly reduced or removed.
Although these professional and academic careers provided employment for some blind people the largest employment sector was in workshops (HMSO 1951). Again significant barriers to employment needed to be removed and it is in the workshops that the greatest resistance to organised charity and political activism by blind workers is to be observed. The origins for this manual employment sector can again be traced to the Liverpool School.
The school adopted teaching methods adjusted to the needs of blind people in occupations including: basket and hamper making; mat and rug making; plaiting; spinning, and sash-line-making (HMSO, 1951). The Liverpool School provided a model for four more establishments in the following 15 years and Henshaw’s Blind Asylum in Manchester in 1835 (Henshaw’s 1996). The training establishments for the blind in many cases opened their own workshops to increase the range of manufactured products and improve efficiency by harnessing the new technologies flowing from the Industrial Revolution (Henshaw’s 1928). However, the lower output levels of blind workers resulted in lower wages than non-impaired workers, with many charities intervening to augment the wages of their blind workers (Henshaw’s 1928; HMSO 1951). It was the relationship between blind workers and charities, in particular the power they held to augment wages (NLB 1920), which saw blind workers act to resist the oppressive relationship they had with charities and take action to induce political change. This can be seen as the first disability movement and what follows is a discussion of the nature of this movement.
The rise of a disability movement
The formation of groups of disabled people with political motives calling for social change to improve their position in society can be seen from 1898. This is the date when Ben Purse, a blind piano tuner, became the first paid secretary of the ‘National League of the Blind’ (NLB), a trade union affiliated to the TUC and the Labour Party (The New Beacon 1950) and launched the league’s own journal, The Blind Advocate (The Beacon 1925). Purse had trained in Henshaw’s Society for the Blind from the age of 9 and much of his later career could be characterized as resisting the domination of blind people by charities and their philanthropic donors (Blind Advocate 1918a).
The aims of the NLB are contained in the April 1918 journal and can be summarized as removing charities from the role of providing employment and financial assistance to the blind and replacing them with State control. The call was for the State to provide workshops at a national level, governed under the Factories Act, with all employees guaranteed a living wage and for technical schools to be developed to train blind workers for employment in industry with adequate pensions for elderly blind people and those incapable of paid work (Blind Advocate 1918a, 1).
Oppression of disabled people was not seen to come from the medical profession, as claimed by some today (for example, Finkelstein 2001) but rather from traditional charities. Indeed, Purse had been hailed for encouraging medical intervention on children and it was estimated that his demand that ophthalmia neonatorum be made a notifiable disease in 1914 had ‘saved the sight of many babies’ (The New Beacon 1950, 88). The condition was easily treatable if diagnosed within the first days of birth. To provide some idea of the scale of Purse’s intervention, in a study of blind institutions in 1882 it was estimated that 30% of the children had become blind due to infection from ophthalmia neonatorum (Wagg 1932, 182). The case that oppressive medical interventions were imposed on impaired people cannot be sustained given that the demand for medical intervention came from an impaired person.
Although Purse’s fight was principally for economic emancipation for blind workers, he believed that if medicine offered the potential to prevent blindness in children, then such intervention was to be encouraged. This stance would possibly be regarded as contradictory by social model proponents who might argue that although his concerns were with altering the social and political environment to improve the lives of blind people, by advocating medical intervention he was moving the focus away from social to medical cures.
However, Purse’s approach can also be regarded as one that offered the potential to strengthen his political strategy and increase his credibility as a disabled activist amongst the wider population. It could be said that it is difficult to imagine that many parents would not gladly accept minor medical intervention to prevent infection if they were to be told such treatment would save the sight of their child. Hence Purse could be seen to be attempting to gain hegemonic acceptance of a strategy which both supports medical intervention if possible to prevent blindness and promotes structural changes in society that might lead to economic emancipation through work for those who are blind. If this approach were to be characterized in terms of models of disability, it would represent a socio-medical model. This position is supported by a letter from Purse published in the first edition of the Blind Advocate in 1899 which states:
Hampered as we are by the physical defeat imposed by nature sometimes but much more frequently by the social sins of the community, we are unable to fight the social and economic battle on an equal footing with our sighted fellow workers. (Blind Advocate 1899, 6-7)
It is clear Purse understood how blind people were disabled by both their impairment and by social and environmental factors and, moreover, that a ‘blind role’ was constructed by those who ‘cared’ for blind people:
Blind people are just what other people have made them. If there are two lines of conduct and two lines of treatment for two sets of people, then two distinct results must be expected. It does not require a University degree to appreciate the undisputable truth of that simple logic. Yes? Blind people are what they are because those who presumed to care for and look after them have made them what they are. (Blind Advocate 1918b, 2)
This of course precedes the same arguments that were made by what now appears to be a ‘second wave disability movement’ generated by residents of the Cheshire Homes in the 1970s. Purse was an influential figure in the NLB, although he did not fight alone in the struggle against organised charity.
The NLB could be considered a trade union of blind activists and their sighted allies fighting for economic emancipation from their oppressive relationship with charities. They clearly understood the political force of a union of blind workers as opposed to the traditional charities for blind people (PKTBAC 1923, 1). The differentiation between the two, rests on the point that organizations of blind people are run and controlled by themselves, whereas traditional organisations for blind people were predominantly run and controlled by non impaired people caring for in this case ‘the blind’.
In their fight for economic emancipation public meetings were held by the NLB throughout the country supported by prominent trades unions in order to highlight the plight of blind workers. On Sunday 14th December 1920 in Plymouth, at a meeting attended by the local MP, delegates from the Dockers’ Union and the National Union of Railwaymen (NUR), a call was made for the creation of national workshops for the blind. The meeting was aware of the political impact on the wider community many of whom may have sympathised with the calls for emancipation out of feelings of pity, and consequently developed the slogan ‘Justice not Sympathy’ with a call from the NUR delegate for action by TUC affiliated unions in support of blind workers by ‘threatening to paralyze the wheels of industry’ (Blind Advocate 1920, 1).
It is clear that a significant political movement developed in support of blind people. However, although in their struggle for emancipation blind activists sought the assistance of allies (Lawley 1920), they were proactive themselves when attempting to induce social change. In the editorial of the May 1918 issue of Blind Advocate, Purse calls for members of the NLB to stand as candidates in the forthcoming general election in as many constituencies as possible to ensure that the legitimate voice of blind people was heard in parliament (Blind Advocate 1918b).
Perhaps the event which had the highest political profile was the march to London by 250 blind workers (Birmingham Gazette 1920; Daily Herald 1920; Leicester Daily Mercury 1920; Manchester Guardian 1920; NLB 1920, 7; The Times 1920) to try and amend the framing of the Blind Persons Act 1920. The march culminated in Trafalgar Square and was joined by an estimated 10,000 supporters on 24th April 1920 (The Beacon 1920, 7). This was followed by a delegation from the NLB, headed by Purse, who met David Lloyd George on 30th April at Downing Street. The delegation argued for economic emancipation for blind workers (NLB 1920) and outlined to the Prime Minister their objections to their oppressive relationship with some charities. The men from Manchester had been joined by delegates from Leeds and South Wales in the culmination of a political campaign started in 1906 which wanted to break the link between charities and employment for the blind. In addition the call from the NLB was for the provision of technical education as preparation for industrial careers and pensions from outside those provisions of the Poor Law which had applied to blind people.
The tension between the NLB and some charities was observable as the Prime Minister agreed to intervene to stop two charities, the York Institute for the Blind and the Bristol Institute for the Blind, victimizing workers by refusing them permission to join the march. The threatened workers did march, with promises of collective support and industrial action if they were subsequently victimized. Purse informed the Prime Minister that victimization was a common practice of many charities and a source of tension between them and their workforce. The NLB had called for a national system of workshops for blind workers, where, under piece work conditions, wages would be augmented to provide a living wage (Blind Advocate 1918a). Drawing on his knowledge as a member of the 1914 inter-departmental committee to investigate the conditions of blind welfare that was intended to provide evidence for the Blind Persons Act (1920), Purse explained the need for augmentation. Many workers were employed on piece-work systems. The inter-departmental committee had estimated that blind workers were, on average, somewhere between 33% and 50% less efficient than other workers. Purse argued that if piece-work conditions were to apply then government should augment wages to provide a living wage away from charity. As the problem of victimization by many charities was evident, Purse called for government to replace the system whereby blind people were forced to go ‘cap in hand’ to charities to enable them to gain paid work. Here Purse directly relates handicap (going ‘cap in hand’) to begging as an unacceptable means of gaining economic security. He also provides some insight into how disability was socially constructed at this time.
When asking for government to augment the wages of blind piece workers, he commented to the Prime Minister that if the recommendations made by the NLB were adopted, then disability would be minimised, thereby allowing blind workers to live a ‘free and highly developed life’. Disability, then, was seen as a form of dependency, an enslavement of sorts, by social structures that provided no means of independent living because of the consequences of impairment.
Purse’s organic intellectual formulation of impairment allows a three stage model of disability to be constructed:
• Blindness was the impairment, a medical condition. Purse sought medical intervention in children to prevent impairment occurring hence it could be argued that he considered the prevention of impairment as beneficial. In other words, being able to see was preferable to being blind.
• Once blindness had occurred and was incurable the model he provided is based on the attitudes of others and economic emancipation.
• Disability becomes a matter of economic equality which can be reduced through economic emancipation. The attitudes of charity workers who socially constructed a ‘blind role’ (Blind Advocate 1918b) could also be regarded as a disabling factor in maintaining dependency. Handicap is the lack of work opportunities which provide a living wage which had historically forced many blind people to beg for money or at least the means to gain paid work (Mahew 1861)
So, like their counterparts in UPIAS some 70 years later, the NLB was a movement of disabled people fighting for emancipation. However, there is a significant difference between the two movements. The NLB recognised the potential of medicine to prevent impairment and their calls were for economic equality rather than the removal of disabling barriers. Hence it can be argued that the NLB adopted a socio-medical model of disability. Perhaps the difference between the purist social model approach of UPIAS and that of the NLB can be explained in terms of a difference in understanding of the causes of disability.
For a sighted wheelchair user, the built environment (such as the placing of kerbs and stairs) can represent significant disabling barriers. However, for a blind person, the natural world can present even greater disabling effects for which there are no remedies. For example, without sighted assistants, how could the blind marchers have found their way to London? What degree of barrier removal could have allowed independent access to this event? The NLB answered these questions by arguing that the disabling barriers were financial. If sufficient funds were available then helpers and transport could be hired to overcome the majority of barriers. This factor acknowledges one social element in the creation of disability but shows that many disabling consequences of impairment are incapable of removal at source and have to be compensated for. One could argue that the payment of helpers to guide the marchers to London is, in essence, no different from buying a wheelchair.
In their campaign for economic emancipation from charities the NLB fought for the control of workshops for the blind to be provided under state control. However, although the Blind Persons Act (1920) did place the responsibility for providing workshops in the hands of local authorities they were allowed to subcontract the running to local charities and many did so (HMSO 1951). Consequently the relationship between many charities and their workers remained the same, as the same management practices continued and the same staff remained in post.
In this section it has been demonstrated that neither the traditional understanding of disability framed in legislation nor an organic intellectual understanding considered disability as purely a medical problem. What also needs to be considered is how the charities that had historically attempted to provide work for blind people and were subsequently contracted to implement the Blind Persons Act (1920) understood the meaning of disability. This will be addressed below by means of the following questions:
• What was the relationship between charities, disabled people and medicine?
• What techniques were used to enable education and training to be undertaken?
• How were disabling barriers to employment removed?
Disabled people and charities
To widen the analysis, two different charities will be compared: Henshaw’s Society for the Blind (a traditional charity for blind people) and Thermega, an organisation created in the aftermath of the First World War, which attempted to engage injured war survivors in paid work during the 1920s. As discussed above, the principal mechanism agreed by both government and blind people to improve employment opportunities was increased access to education and training. This analysis now turns towards the practical consideration of how organisations charged with delivering these services made appropriate adjustments to allow blind people access to these schemes.
Henshaw’s Blind Asylum opened in 1837 in Manchester whilst Thermega commenced trading from a factory in Kent in 1927 to provide work for men who were disabled as a result of the First World War. To provide historical comparisons, both organisations will be examined through documentary data produced by each in 1927. Information about Henshaw’s consists of company audited accounts and their annual report for that year (Henshaw’s 1928). More current histories of the organisations will also be drawn upon. Information about Thermega is based on an illustrated brochure which advertised its mission and operations and documents produced by the Ex-Services Welfare Society who promoted Thermega’s services (ESWS 1939; Thermega 1927)
Henshaw’s Blind Asylum
The word ‘asylum’ in the organisation’s name represented, at the time, a traditional intellectual understanding of the needs of blind people and refers to a place of safety, which the Victorian philanthropist by whom the asylum was founded, considered the most appropriate means of supporting blind people (Henshaw’s 1996). The society has changed its name several times since its foundation, and today is named Henshaw’s Society of Blind People’. Again, as discussed above, the ‘of’ in the modern title reflects a move towards self-governance and control by blind stakeholders.
The founder of the asylum, Thomas Henshaw, was an Oldham businessman and philanthropist who died in 1810. He bequeathed £20,000 for the establishment of an asylum for the blind in Manchester which opened in 1837 providing education for children, sheltered accommodation for elderly blind residents, training in industrial techniques and employment both at home and in the organisation’s own workshops for adult blind people. The charity grew as other benefactors provided land, buildings and financial support (Henshaw’s 1996) with some investments purchased in debenture stocks primarily in railway companies and government war bonds (Henshaw’s 1928). The income from these investments was used to offset operational and trading costs. Additional funding was later provided as the organisation acted as an agent for the local authority to provide work for blind people under the Blind Persons Act (1920).
Before examining how Henshaw’s implemented its mission, it should be noted that Henshaw’s began educating children from the age of six in 1837 (Henshaw’s 1996), more than 50 years before legislation made the education of blind and deaf children compulsory under the Elementary Education (Blind and Deaf Children) Act (1893). Henshaw’s could thus be said to be progressive in relation to the education of blind children, laying the foundations for many to continue after schooling into training for employment in a variety of industries, both in their own workshops and in open industry.
Henshaw’s recognised that impairment itself did not cause disability, but rather that lack of education and training opportunities were restricting peoples’ employment opportunities. Henshaw’s defined a blind child as, ‘one who is unable to read the text from an ordinary school book’ (Henshaw’s 1928). This is a definition unconnected with any medical diagnosis but it acknowledges a concept of normal vision and the barriers presented through the use of print and proof of group membership required the child to demonstrate a prescribed severity of impairment. The organisation did not specifically attempt corrective measures (such as the use of magnifiers) but taught children using alternative methods including Braille. The curriculum mirrored traditional schooling methods with pupils accessing text through Braille books and geography taught with the aid of embossed globes and maps (Henshaw’s 1928). So, within the sphere of education, blindness was accepted and technologies were utilized to improve learning potential. The children were also taught how to understand the concepts of colour, landscapes, scenery, and so on to improve their ability to mix with sighted peers.
So, it could be argued that in addition to conventional education, children were taught a modicum of social etiquette designed to present an illusion of normality by denying the consequences of their impairment. Hence Henshaw’s appears to have adopted two contradictory positions. On the one hand, inside the organisation magnifiers were rejected in favour of alternative access technologies which enabled the acceptance of difference and hence encouraged an integration strategy. On the other hand, in relation to wider society, the organisation sought to teach children how to minimize difference, to facilitate social acceptance. Perhaps this apparently contradictory stance could represent an inherent inconsistency in common sense but one might also argue that although certain methods accommodated inherent ‘differences’ imposed by impairment the organisation acknowledged that if blind people were to be accepted in wider society then the minimising of this difference might also be a parallel pragmatic response. In effect it could be argued, that instead of being alternative approaches, integration becomes a mechanism which can reinforce a dominant assimilation process (Paterson and Hughes 1999, 608).
For those deemed too blind to gain employment in the external labour market, on completing education at (on average) 16 years of age, the majority of these blind pupils entered work-based training programmes within the organisation as Trainees ‘A’. Entry into training programmes was within a limited range of occupations with the organisation determining the occupations suitable for blind people. These designated jobs included: music and piano-tuning; Braille shorthand; typewriting and boot making and repairing all of which could provide careers outside the organisation. Other occupations including basket making; mat making; brush making; cane and rush seating; handloom weaving; round and flat machine knitting, and mattress making, were based inside the organisation’s workshops (Henshaw’ 1928). In addition to Trainees ‘A’, Trainees ‘B’ were people who lost their sight in later life after a period in work and were offered training to adjust to working without sight. The majority of Trainees ‘B’ were found employment in the organisation’s own or other blind workshops.
In total, during 1927, the organisation had 131 students in training and 167 people were in employment in their own workshops. However, the workshops were not immune to outside economic factors. Excess stock and lower than predicted sales led to a number of workers being put on short time working until stocks decreased. The workshops operated at a loss and workers’ wages were augmented from charitable receipts and income from investments. Through improved efficiency and modern manufacturing methods, the organisation had, year on year, reduced its manufacturing losses through urging ever-increasing efficiency targets on workers whilst simultaneously acting to increase income from charitable sources (Henshaw’s 1928).
However, whilst company records indicate that increased efficiency was a primary source of reducing costs, the organisation had, five years earlier, reduced expenditure by cutting the augmentation of wages. To some extent, blind workers became victims of their own success. As funding of workshops had been taken under state control under the Blind Persons’ Act (1920) the trading accounts for the society had been audited by government who instructed Henshaw’s to reduce operating losses by reducing augmentation payments (Henshaw’s 1922). Again, in response to this, disabled workers took industrial action and a strike ensued in support of demands that Henshaw’s workers be paid in parity with manual workers employed by the local authority (Gregory 1923).
Although some employees were employed on site for those incapable of travelling to the workshop because they had mobility problems and a visual impairment or for those who were incapable of factory work, home-working was provided. This work typically centered on knitting and embroidery. The number of home workers had increased to 27 from 21 in the previous year, with home workers assisted through an augmentation of wages scheme. Other forms of assistance consisted of free delivery of material at cost price; assistance to obtain orders; purchase of surplus goods; correction of faulty work, and tuition in new designs and patterns (Henshaw’s 1928). Operating at a loss, the home workers’ scheme was seen as necessary in providing work for people with multiple forms of impairments.
However, operating losses cannot be directly attributed to efficiency deficits caused through impairment. An analysis of the accounts indicates excessive raw material and finished goods stocks. In that regard, losses could have been the product of poor marketing and material controls, perhaps a consequence of the attitudes of management who had deemed which professions were suitable for blind people. The operations could be skewed to products that the organisation wished to manufacture rather than finding demand driven by consumer requirements. It could be argued that inefficiency was the product of poor management skills and impaired workers were used as an excuse to cover this.
Henshaw’s records provide strong evidence that people with severe impairments have historically been capable of work. Within the organisation’s workshops, some adjustments to practices and manufacturing methods were made. For example, jigs and fixtures were utilized to accurately position components for machining or assembly, and where there was a necessity to measure comparators were used which eliminated the need for vision.
Although Henshaw’s entire production workforce was blind there were opportunities for progression and a number of people who had previously been production workers were employed as trainers. From the audited accounts it is not possible to determine if trainers received more money than piece workers, although it is clear that differential payments were made depending in which department the workers were employed. Blind workers therefore held positions other than production and some years later were also in managerial positions. In 1938 Ben Purse was elected to Henshaw’s management board (Henshaw’s 1938, 120).
It is not being suggested that the relationship between the charity and its workers was anything other than oppressive, however neither were the workers merely passive recipients of charity. Rather they organised and were proactive in attempting to change their relationship with the organisation from within. Henshaw’s provides evidence in support of two propositions. Firstly, an active disability movement sought to change social conditions to improve the lives of disabled workers. Secondly, both the organisation and the workers adopted a social model analysis when attempting to remove disabling barriers. The organisation made no attempts to utilize a medical model by changing the impaired body to fit existing jobs. Instead they adopted working practices and created environments which enabled many blind people to gain employment: in other words, a social model.
Henshaw’s history effectively demonstrates several methods through which severely impaired people were engaged in work. Crucially, the organisation had a mission and a desire to assist disabled people gain paid work. Most of the workers did not live in the organisation’s accommodation but in their own homes and so it could be argued that Henshaw’s to some extent facilitated the independent living of disabled people and, by changing social environments and attitudes, provided the means for independent living for many severely disabled people. This was of course the call made by UPIAS several decades later (UPIAS 1976), when their members claimed to have represented a new understanding and politicisation of disabled people (Barnes 1997; Campbell and Oliver 1996; Finkelstein 2001; Oliver and Zarb 1989; Richardson 1997; Swain et al 1993). The evidence collected from Henshaw’s records suggests that political activism by disabled people seeking emancipation was occurring from early in the 1900s and that socially constructed barriers were understood, even then, to cause disability, and actions were taken to remove such barriers.
In addition to providing employment opportunities, Henshaw’s adapted premises and methods of production to create a non-disabling working environment. At the same time sales and marketing traded on the fact that the organisation employed blind people arguably utilising pity to assist sales and charitable donations. By comparison, when Thermega was formed in 1927, it specifically rejected charity and the concept of pity on which Henshaw’s largely traded. Henshaw’s primarily assisted severely impaired people whilst Thermega arose as a consequence of the First World War and an estimated doubling of the disabled population (Tomlinson 1943). These ‘new’ disabled had, in most cases, worked before becoming impaired and Thermega, whilst attempting the same outcome in relation to employment as Henshaw’s, embarked on a radically different industrial strategy.
Thermega Ltd.: an 'industrial experiment'
The philosophy and ethos of Thermega are identified in the following extract from company documents:
Many attempts have been made to solve the problem of rendering large numbers of substandard [sic men and women, who through war injuries or other causes have fallen out of the ranks of normal industry. It could not be said that in England, any one of these efforts has proved economically successful, or possessed any inherent prospects. The primary cause of these failures can be traced to the circumstances under which the purely industrial aspects of the problem, were invariably rendered subordinate to the philanthropic and sentimental considerations which, in the nature of the case, invariably proceed and usually govern endeavours of this kind. (Thermega 1927, 2)
Thermega publicly rejected charity and pity arguing that both acted against the employment of disabled workers. However, the initial capital (£20,000), necessary to purchase fixed assets and operating materials was donated through a charity, the Ex-Services Welfare Society (ESWS). Additionally, these benefactors decreed that no directors should receive payment and as the sole shareholder ESWS would not receive any dividends derived from company profit (ESWS, 1939). Here resides a paradox. Charity was rejected on the grounds that pity ultimately did not aid the employment potential of disabled people yet it was an acceptance of charitable donations that gave Thermega a financial competitive advantage over other companies who may have had to raise finance in money markets. In this regard, the company can be seen to hold two formal contradictory positions. It both rejected and accepted charity an attitude which can be seen as a common sense approach. These contradictory positions can be explained if organisational politics are separated from organisational practice.
Charity provided a means to commence trading and to reject charity might have meant that the organisation was unable to exist. However, the rejection of pity and the idea of charity became an organisational policy with publicity and marketing literature never mentioning that the workforce consisted of disabled war survivors (ESWS, 1939). Superficially, Thermega would appear to support the concept that a homogeneous mass of disabled people can gain employment without overtly calling on charity for additional support. But how did Thermega employ people with a variety of impairments?
Funded by the Ex-Services Welfare Society, the disabled workers were, in the first instance, inmates of a post war ‘curative centre’ or hospital, where medical and rehabilitation efforts were aimed at correcting war injuries. Located in Beckingham, Thermega was situated in the grounds of the hospital, and potential employees were selected after medical opinion had deemed them fit to enter the workforce. In other words, the capable were found paid employment whilst those medically determined as ‘inefficient’ were consigned to institutional care. This is in stark contrast to Henshaws’, where severely impaired workers were enabled to gain paid employment via home-working.
In order to operate without further charitable donations Thermega needed to demonstrate that it was an efficient organization, and this meant that it could not carry the financial burden of excessively inefficient bodies. This necessitated selecting employees with less severe impairments in order to meet the efficiency demands of a competitive organisation. However as will be discussed below this was not without its problems. In Thermega then, impairment and disability were seen to be interdependent.
Thermega made several strategic decisions - medical, environmental and economic -which combined to produce an efficient organisation. In addition to the medical care workers received, their accommodation was located within the grounds of the hospital. Effectively this meant that some limitations in mobility (such as the ability to walk long distances to work) were removed. The work itself consisted primarily of assembly tasks. Components were delivered to individuals which removed disabling barriers of the ability to lift and carry. This practice was also adopted by Ford in the US who employed many disabled people in times of labour shortage (Chandley 1943).
Perhaps the most significant strategic decision made by the organisation was to protect the market in which they traded. This was achieved through purchasing a patent on an electrical blanket, for which there was a high demand from hospitals and the military (ESWS 1939). The organization, therefore, had a monopoly position, ensuring it remained free from competitive pressures on the price it charged for its products. The following extract from the Thermega brochure demonstrates the organisation’s rationality in selecting a monopoly as critical for the employment of less efficient workers. Thermega was described as:
A manufacturer of articles that were patented or registered designs or any specialised production in which the margin of profit was correspondingly enhanced to counteract the reduced capacity of the disabled worker. (ESWS, 1939)
So, a protected monopoly market was chosen where premiums could be placed on goods allowing the organisation to make a profit thus countering the effects of employing less efficient disabled workers. Whilst Thermega selected workers who were not severely impaired they also accepted that the employment of disabled people could only be achieved with additional financial assistance. In other words, even the least impaired people were seen to be less efficient than non-impaired people. If this was the case it raises the question of whether employment within a subsidised environment offers any benefits other than providing sheltered and subsidised work.
It is possible to argue that Thermega provided a stable adapted environment where some disabled ex-service women and men could adjust to work after war injury. Indeed, it could also be argued that the workers gained confidence and self esteem which enabled many to progress into open employment. In ten years of operation, with an average staff of 40, 194 disabled people progressed from Thermega into open employment (ESWS 1939).
However, a caveat is necessary regarding the definition of what constituted a disabled person, particularly in relation to severity of impairment. There is a confusion about this issue within discourses of disability. Although the generic term ‘disabled people’ is applied to all severities of impairment only those whose impairments were medically determined as not excessively restrictive in relation to work were chosen for training. So, although Thermega utilised the generic term ‘disabled’, in reality the organisation was actually referring to people with specific severities of impairment. As discussed in the following chapter, this practice represents a continuity in traditional intellectual understandings, as it is also applied in legislation today where employment protection under the 1996 Disability Discrimination Act is dependent upon the severity of individual impairments (Doyle 1996; Gooding 1996).
Using the generic term ‘disabled’ can produce a misleading impression regarding the success of progression of workers from the organisation into open industry. To argue that a high proportion of Thermega staff progressed into open employment is to ignore the mass of severely impaired people who were deemed unsuitable and consigned to institutional care in the hospital. A hierarchy was created where those with slight or minor impairments could progress through assimilation more easily into the workforce than the institutionalised inefficient mass. This is observable today, where the consequences of utilising disabled as a generic term masks a reality where levels of unemployment vary between impairment specific groups. For example, people with mental health conditions or visual impairments are more likely to be out of work than people with diabetes (Hibbert 2000).
The two organisations that have been compared operated workshops up to the outbreak of the Second World War. Under government instruction, Thermega then had to end its monopolistic position and commence producing alternative goods (ESWS 1939). It was ordered to expand and employ more disabled people perhaps providing the impetus for the sheltered workshop provision after the cessation of the war and incorporated in law under the Disabled Persons Employment Act (1944).
In recent years some have regarded the sheltered workshop sector created by the post Second World War act as representing 50 years of failure with reference to the employment of disabled people (Hyde 1996). However, it should be recognised that the call for state controlled workshops first came from disabled people themselves and was regarded as a progressive move by which some disabled people could achieve economic emancipation (PKTBAC 1923). Social model proponents today might argue that the call for workshops by disabled people was an effect of ‘false consciousness’, an acceptance of the inevitability that they would have fewer employment opportunities and that such an acceptance was due to a process of historical oppression which reaffirmed that their secondary status was due to an impairment. However, it can be seen that the dominant understanding of disability was based on a socio-medical model of disability which had become common sense (widely accepted by a wide range of people) and that underpinned the provision of workshops for the employment of disabled people. Workshops provided training, experience and confidence for many and, as illustrated, allowed progression into open or self employment through the provision of home-working for those unable to travel to work.
Henshaw’s workshops were bombed during the early years of the Second World War and subsequently closed (Henshaw’s 1996) and many blind workers (as well as workers with other forms of impairment) found employment in heavy industry in the Trafford Park industrial area of Manchester. The Second World War brought equal opportunities at work for many disabled people for the first time (Humphreys and Gordon 1992) as a result of labour shortages caused by conscription.
Summary
It is difficult to argue from the evidence presented in this chapter that the social model is new and that historically disabled people have been passive victims of medical oppression. It has been demonstrated that they were influential in promoting social change which included schooling for blind children and that they were active in pursuing political influence to gain economic emancipation which could allow independent living. The activists in the NLB were assigned the role of organic intellectuals who generated a good sense challenge to traditional intellectual common sense which assigned blind workers to an oppressive relationship with charities. The NLB gained support from other groups for their cause and ultimately their good sense became more widely accepted as common sense and translated into legislation. However, this common sense view maintained a traditional intellectual understanding which acknowledged that two components were in operation in the discourse of disability that is social and medical factors. Impairment was widely used to determine group membership and for those where impairment did restrict the ability to work, in many cases structural barriers were removed to facilitate their inclusion. One concept to emerge from Thermega’s use of the generic term 'disability' was that although the organisation claimed to improve the employment potential for 'disabled' people, in fact the term concealed the reality that many severely impaired people were excluded and (from an organisational perspective) consigned to silence.
If both Henshaw's and Thermega are considered against present day organisational rationalities (Euske and Euske 1991) then some elements of their contradictory common sense understandings can be discerned. Both applied a political rationality in attempting to reassure funders that their mission was being delivered. Both attempted to apply technical rationalities to quantifiably demonstrate the most efficient use of resources. However, Henshaw's could overtly acknowledge through augmentation of wages that inefficiency was attributable to impairment which reinforced the traditional intellectual understanding of the role of charities: that blind people were dependent on them for financial support. This was the common sense view which was critiqued to produce the good sense challenge from the NLB. On the other hand, Thermega covertly required an economic subsidy and a protected monopoly position to offset any inefficiency in impaired workers. Good sense argued that charity was the cause of oppression. However, as ideology became translated into practice, common sense displayed contradictory actions which saw Thermega adopting the political rationality of publicly rejecting whilst privately benefiting from charity.
The following chapter completes the historical review, considering how traditional intellectual understandings have been expressed in legislation from the Second World War era to the present day.
Chapter 5
An Historical Reflection on Disability (II)
The previous chapter showed how organic intellectuals challenged dominant traditional intellectual formulations of disability by creating in the first instance a good sense call for the economic emancipation of blind workers from their oppressive relationship with charities. These organic intellectuals considered that the principal cause of disability was economically based and succeeded in having their ideology accepted as common sense which then became hegemonic. This intellectual shift was demonstrated by the Blind Persons Act of 1920. However, the call for medical intervention to prevent blindness in children was made by a senior NLB member. So, although organic intellectuals challenged oppressive economic and social relationships they accepted medical interventions to alleviate the consequences of impairment wherever possible. Therefore traditional intellectual formulations of disability cannot be reduced to polar opposite models as both the social and medical models operated in parallel.
This chapter traces the ways in which traditional intellectual formulations of disability were expressed from the post-Second World War period to the introduction of the 1995 Disability Discrimination Act (DDA). The relevant legislation is reviewed in order to determine how such traditional formulations informed policy.
Disability post- Second World War
Many soldiers acquired impairments as a result of the Second World War. On their return home, many organisations raised the issue of how these newly impaired people could go back to work (Anderson 1941; Dickson 1950; Fraser 1940a; 1940b; HMSO 1951; MacDougall 1944; Realist Film Unit 1941). The response from government was to instruct a committee, made up of members from the Ministry of Labour (MOL), the Trades Union Congress (TUC) and employers under the chairmanship of M.P. George Tomlinson to report on how disabled people could return to employment after the war. The resulting report (Tomlinson 1943) heavily influenced the Disabled Persons Employment Act (1944) (DPEA). The Act defined disability as:
an injury or condition which causes substantial handicap to getting or keeping employment or work on its own account, of a kind suited to a person’s age, experience and qualifications. (MOL 1946d, 3)
Here an impairment (injury or condition) is clearly identified as the cause of handicap a definition that reinforces a medical model of disability. However, the remedies used to engage disabled people in work were for many achieved by removing social barriers and changing disabling attitudes (Fraser 1940a, 1940b). The implementation of the Act will be discussed later. What follows is a discussion of the implications which followed the use of the generic term ‘disabled’ as a group identifier.
In determining who ‘the disabled’ were the 1944 Act began a taxonomic process aimed at the quantification of impairments. The Act included an assessment process that coupled a voluntary disability registration scheme (MOL 1946d) with an evaluation of exactly which impairments and with what degree of severity could legitimately be assisted under the terms of the Act. The assessment process enlisted the assistance of the medical profession:
Take for example a man who says he has cardiac trouble. Clearly we must have medical evidence and it is not unreasonable to call upon an applicant to produce […] some confirmation of his claim. In order to help him and his doctor, we give him a form of a very simple nature for his doctor to complete. If this is sufficient to determine the case, no further evidence is called for. (MOL 1946c)
In order to determine whether an individual was handicapped, the medical profession was given the two-fold administrative task of assessing how substantial an injury or condition was as well as considering demographic factors such as age, educational background and previous employment. So although pivotal in the assessment process, the impaired body was not the only site for assessing disadvantage. If the body were considered as the sole site of handicap then removing or reducing handicap would focus on repairing the impaired body. However, the remedies adopted to solve the problem of handicap were based on both medical (rehabilitation and treatment centres) and the social and environmental removal of barriers (Tomlinson 1943).
For many injured soldiers, the first stage in regaining employment was medical treatment and rehabilitation such as the fitting of prosthetic limbs hailed by many, including disabled people, as a welcomed medical intervention (MacDougall 1944; MOL 1946a). In addition to this medical approach, several structural changes were made to aid disabled people gain employment including: opening a new department of the employment service staffed by Disability Resettlement Officers (DRO) whose task was to assist disabled people gain employment or benefits (MOL 1946b); placing an obligation on employers of over 20 staff to recruit 2% of their workforce from disabled people (MOL 1946b); the introduction of sheltered workshops for those with more severe impairments who, it was argued, would find employment difficult in a non-supportive and adapted environment (TUC 1941; 1943b), and the provision of training and education to enable entry into executive and professional occupations for suitable candidates (Tomlinson 1943, 9).
To fall under the remit of the Act it was necessary for impaired people to register as disabled with the MOL. Registration, a voluntary process, was considered necessary to monitor the quota scheme, although failure by employers to meet the quota did not necessarily constitute an offence (MOL 1946b, 2). Transposed into current equal opportunities theory, this would be regarded as a radical approach (Jewson and Mason 1986) which failed. The voluntary registration scheme came under attack from both people with impairments and employers. Figures for the numbers of voluntary registrations were low because many impaired people wished to avoid the social stigma of the label ‘disabled’ (TUC 1945). Employers however, attempted to have registration made compulsory because if non-registered people were employed then they may have exceeded their quota obligation without knowing it (TUC 1945). The numbers of disabled people in employment could never be accurately assessed.
What emerges is a conflict between a need to quantify the effectiveness of legislation and the reluctance of people with impairments to be labelled in a category some perceived as negative. For employers, the solution was to advocate a compulsory registration scheme. In the absence of this some employers actively encouraged existing employees with minor or slight impairments (such as mild asthma or varicose veins) to register as disabled through the work’s doctors (Ball 1945a; Gardner 1946). Here it can be argued that a medical model (an assumption that any degree of impairment can directly translate into disability) is evident. Registration was not made compulsory (TUC 1945) hence it becomes difficult to argue that either a medical or social model dominated traditional understanding, rather it would appear that a socio-medical model is apparent.
The problem of registration was not the only factor to challenge the effectiveness of the Act. Whilst there had been a tripartite consensus between the Government, the Employers Federation and the TUC for the war period (Tomlinson 1943) this proved more problematic once the men returned and tensions surfaced between these actors.
A ‘solution’ to these tensions came in the form of some major industries (including engineering, furniture manufacturing and printing) who sought and achieved exemption from the quota scheme. Exemption from the quota effectively meant that the industry subverted the spirit of the DPEA leaving the real choice of whom to employ firmly in the hands of the employer. Where a quota was accepted, employers attempted to have disabled workers consigned to 'scheduled' occupations predominantly in low skilled jobs. This was despite employers agreeing to accept disabled workers who had gained skilled accreditation on returning from the war (MOL 1946a; Tomlinson 1943:9). Scheduling was promoted because employers felt the fulfillment of the quota could be more easily met if it only applied to low skilled occupations (TUC 1943a: clause 3). The MOL did not accept the scheduling argument (MOL 1946a), so the employers’ suggestions were not adopted and ultimately the scheme failed and the employment of disabled people in open industry after the war never met the quota (HMSO 1951).
In addition to resistance from employers, the TUC also affected the employment of some disabled people by effectively scheduling certain occupations as the preserve of men. During the war the MOL had insisted that certain occupations be opened up to disabled women, in particular cutting jobs in the clothing industry. The TUC argued against any change to existing working practices stating:
The clothing industry would not allow the training of women for jobs in the industry recognised as being men's jobs. (TUC 1941, 2)
The TUC adopted this stance despite an assurance from the MOL that after the war under the restoration of pre-war practices these jobs would be returned to men (TUC 1941). The TUC thus resisted increased opportunities for disabled women arguing:
It seemed to us much more reasonable to include training as nurses for women than it was to include the clothing industry. (TUC 1941, 2)
Clearly not all disabled people suffered the same degree of discrimination as disabled women who were doubly disadvantaged by both their gender and disabling attitudes. Although some employers sought to discriminate against most disabled people, regardless of gender, by restricting employment opportunities the TUC also added to the discrimination against disabled women. Given this situation, any claim that disabled people were seen as one homogeneous group facing the same disabling barriers seems flawed.
In attempting to placate the TUC, the MOL argued that after the war, pre-war practices would enable a return to the old status quo. This raises the question of exactly what happened to those disabled people employed during the war, once the war had ended. One example appears in correspondence between the TUC and a member organization, The Rawtenstall Trades Borough Council (RTBC) wrote to the TUC seeking advice on this very problem:
My council has been discussing the reinstatement of disabled ex-servicemen and a point has arisen on which they would like your opinion and advice. Men of the above class are being reinstated but are not able to do the work they did prior to joining the forces. This means they are having to be found light work, which has usually been reserved for men who through age or sickness are no longer able to carry on with their work. Some of these by the way are ex-servicemen from the first war. We want to do right by the lads who are returning disabled, yet at the same time, those who have given long service in industry etc, must be considered. (Driver, 1945)
The tensions faced by both the employers and the TUC can be viewed as the difference between good sense and common sense. The agreement that returning injured soldiers should be assisted in regaining employment was good sense. However, once this ideological stance turned into practical application, common sense unveiled internal inconsistencies. For employers to demonstrate that they were achieving a quota, common sense demanded that a means of ascertaining how many disabled people they ought to employ was thwarted by the position of many injured soldiers who did not want to be registered as disabled. Additionally, in times of labour surplus employers sought the most efficient workers, a practice that conflicted with the imperative to employ disabled people.
For the TUC similar contradictory positions applied. If their role was to promote the interests of their members then good sense would support a return to the pre-war status quo and if returning injured members required employment but were unable to continue their previous occupation, then lighter duties should be sought. However, RTBC added a further contradiction by suggesting these lighter duties were already filled by members injured in previous conflicts. Hence it would be unfair on those members if they were to be replaced by recently injured people. The TUC did not resolve this contradiction, it simply directed the council to go to the Labour Exchange and obtain details of the DPEA (TUC 1945b). Open employment for disabled people never achieved the levels specified in the quota (HMSO 1951). However, one other employment strategy did provide additional employment opportunities in sheltered workshops (HMSO 1973).
Within the DPEA, workshops were to be operated by an independent limited company, Remploy, and controlled through the employment service (Hyde 1996: 684). Remploy was intended to be a manufacturer of goods for the war effort or public services. Employees were recruited for their experience and character rather than a medical consideration of their impairment (Tomlinson 1943). This suggests a social rather than medical approach. The aim of these workshops was to generate self-confidence in an efficient production system, which would allow movement of staff into open employment, thus releasing jobs for other disabled people in the sheltered workshops. The following section will review the provision.
Sheltered and subsidised workshops
The sheltered workshop sector was divided into two parts. In addition to the industry- based models mentioned above, a second group operated principally to provide therapeutic work under medical control to meet statutory requirements (HMSO 1973). For example, the National Health Service Act (1946) included powers for local authorities to provide suitable work as part of an aftercare service (Section 28) and Section 29 of the National Assistance Act (1948) entailed the provision of workshops and hostels by local authorities to cover the welfare of all ‘persons substantially and permanently disadvantaged by impairment’.
Under State control two models operated. One adopted a social approach by supporting and preparing impaired employees to join the open labour market, and included Remploy who primarily provided training opportunities. If this approach is analysed in terms of today’s organisational rationalities the intention of establishing Remploy can be considered principally as a technical rational organisation attempting the socially desirable goal of engaging as many disabled people as possible into efficient work in open industry (Euske and Euske 1991). Some traditional charities, trading primarily on pity and manufacturing a limited range of goods with augmented wages to counter the inefficiencies of disabled workers (HMSO 1973; Ibbotson 1998) also fell within this category. A second approach was based on a medical model and was largely therapeutic. The latter workshops provided a social outlet for some people for whom work in the open labour market was beyond their capabilities. For example, for some severely learning impaired people therapeutic work could provide a means of social interaction without the demands of efficient production. Again in terms of present day organisations, this approach mirrors an institutional rationality (Euske and Euske 1991) where the socially desirable goal of engaging this group of impaired people is achieved without demonstrating organisational efficiency in terms of quantifiable work outputs. Following a review of sheltered and subsidized workshops some years later (Piercy 1956) it was recommended that the three providers should be retained but should fall under a single department of employment. It would appear that the demands of the NLB for state control of the workshop sector some 57 years earlier (NLB 1899) had finally gained full acceptance.
Piercy’s recommendations became law under the Disabled Persons Employment Act (1958). The effect of the Act was to divide sheltered workshop provision into two categories. The first provided employment on efficient production methods intended to provide a livelihood, the second provided therapeutic work. The therapeutic workshops operated independently of industry. The industrial workshops were intended to progress as many disabled workers into open employment as possible (Piercy 1956). Workshop provision increased further as a result of the Mental Health Act (1959) with the Minister of Health instructing local authorities to include ‘mentally handicapped’ people within their welfare provision, thereby reversing the existing policy of institutionalisation of mentally impaired people (HMSO 1973). This again exposes a problem in defining disabled people as one homogeneous group. Although UPIAS fought against institutionalisation (UPIAS 1976), their call applied only to physically impaired people who were resident in homes. For others in mental hospitals, the process of closing such institutions had already commenced under legislation with the social provision of housing and employment in place. Although this institutional policy could be regarded as simply a change from large to small institutions, nevertheless this change can be regarded as increasing the potential for independent living as impaired people achieved closer contact with local communities.
Under their legislative obligations, many local authorities increased their sheltered workshop provision over the following years to match increased demand and in 1962 local authorities and voluntary organisations were advised of the Department of Employment's willingness to collaborate in providing additional sheltered workshops under a grant scheme. The result was increased collaboration, regulated through combined accounting and management structures and the integration of different impairments in the one workshop (HMSO 1973; Ibbotson 1998). This structure has remained in place up to the present day, although the overall provision of the workshop sector is set to change with the introduction of the Work Step programme. The principal purpose of the change appears to mirror the original intention of Remploy, to improve the progression rate of disabled people from sheltered workshops into open unsubsidized employment (Disability Now 2001; Hermeston 2001; Hodge 1999). How successful this initiative turns out to be will only be determined after several years of operation. In the meantime, a new piece of legislation was introduced to assist disabled people to find employment in the open market in the form of the Disability Discrimination Act (1995).
The Disability Discrimination Act (1995) (DDA)
Between 1982 and 1995 there were 13 attempts to introduce anti-discrimination legislation on behalf of disabled people (Barnes 1991; Barnes and Oliver 1995). The DDA had its origins within one of these failed earlier attempts. The Civil Rights (Disabled Persons) Bill, had been abandoned by Government in July 1994. In a parliamentary debate Nicholas Scott, Minister for the Disabled, argued that the proposed Bill failed to take account of the interests of business and that the costs associated with implementation would be too high. As an alternative, a long-term policy of challenging discrimination was proposed. The key elements to tackle the problem of disability discrimination were identified to be education, persuasion and increasing awareness (Barnes and Oliver 1995, 113). The proposals were sent out for consultation to groups who would be affected by any disability discrimination law and their responses informed the framing of what became the Disability Discrimination Act (1995). The DDA provides some protection from direct discrimination in employment, the provision of goods and services, and in the selling or letting of land (Doyle 1996a; Gooding 1996). For the purpose of this thesis, the relationship between the DDA and its employment provisions will be considered.
The DDA followed the Sex Discrimination Act (1975) (SDA) and the Race Discrimination Act (1976) (RDA). All three Acts have the same intention: to prevent discrimination on the grounds of race, sex or disability with all three adopting a categorical approach to determine who was to be covered by the legislation. Hence, it would seem reasonable to expect the structures of all three Acts to be similar. However, when the DDA is compared to the SDA and RDA, it becomes apparent that this is not the case (Cooper and Vernon 1996; Doyle 1996a). The DDA is fundamentally different in the manner in which it differentiates between individuals through a myriad of caveats, special circumstances and justifications to arrive at a very specific group of people who can claim protection under the act.
One significant reason for the difference between the SDA, RDA and DDA, is the inherent difficulty in defining the disabled as a group (Woodhams 2000). The differences between sexes and ethnic minorities can, to a significant extent, be readily distinguished (Bourne and Whitmore 1996) whereas disability as a clear cut homogeneous concept is far more difficult to determine. For example, does a visual impairment which requires correction by the use of spectacles constitute disability? From both a medical and social model analysis it can. Medically, the impairment causes a loss or lack of eye function, ergo it is a disability. From a social model point of view, if the person faces discrimination because of a need to wear spectacles the experience of disability would lie in the insistence that only people with ‘normal’ vision were accepted. Thus the DDA had the additional difficulty of determining how to define a disabled person, irrespective of the cause of their disability.
Part 1 of the three-part DDA is dedicated to defining disability (Cooper & Vernon 1996; Doyle 1996a). A disabled person is defined within the DDA as:
someone with a physical or mental impairment, which has a substantial and long-term detrimental effect on their ability in carrying out normal day-to-day activities. (DDA 1995, 1-2)
A direct link is made between impairment and disability, reinforcing a medical model by making the impaired body the cause of disability. So, once again a three-element model can be constructed that situates disability within the impaired body. In order to analyse the model, each element will be considered individually and what is implied within the DDA by the terms ‘impairment, ‘substantial and long term’ and ‘day-to-day activities’ will be deconstructed.
Impairment
The DDA avoids the problem of specifying impairment by not offering a definition. The assumption offered by some academics is that when necessary the courts will revert to existing medical taxonomies (Doyle 1996a). In retaining consistency, physical impairments are not defined, although it is implied that most commonly understood impairments (limb impairments, cerebral palsy, epilepsy amongst others) will be accepted (Doyle 1996a). Sensory impairments also fall into the physical impairment category. Mental impairment similarly is not defined, although it is speculated that learning difficulties, together with psychiatric and psychological impairments, will fall within its remit (Doyle 1996a; Gooding 1996).
However, until case law evolves, addictions and anti-social disorders (DDA Regulations, 1996) will probably fall outside the parameters of the Act. It is believed that amongst these conditions will be solvent, alcohol or drug addictions, homosexuality, bisexuality, exhibitionism, voyeurism, gender identity disorders, kleptomania, compulsive gambling and pyromania (Doyle 1996a). Mental impairment is considered in relation to definitive clinical recognition the purpose of the Act being not to cover ‘moods or mild eccentricities’ (Doyle 1996a, 19).
Medical definitions will therefore exert considerable influence in ultimately defining who constitutes a disabled person, particularly in cases where medical opinion is divided as, for example, in cases of chronic fatigue syndrome, pre-menstrual tension or obesity where the existence of the condition is medically unproven (Doyle 1996a). Having determined the relevant impaired population, the next hurdle is to quantify the severity of the impairment and estimate how long is it likely to last.
Substantial and Long-Term Effect
These terms attribute quantitative values to the effects of impairment. ‘Substantial’ is measured against activity completion, whilst ‘long-term’ is measured in relation to whether the impairment is likely to last 12 months or longer. It is the aim of the Act to refer to expert medical opinion to distinguish between disability and short-term illness.
However there are anomalies within the Act which specify a number of conditions that do not have a measurable attributable impairment. For example, severe facial disfigurement is covered under the Act because of the attitudes of others (Partridge, 1996). This acceptance of disability in terms of attitudinal barriers is, however, restricted to named conditions. There is no concession to discrimination that could be founded on the fears or attitudes of others. If for example, a person were diagnosed to be HIV positive, this would not fall under the Act, as the effects on the individual of the attitudes of others have no measurable, medically determined outcomes. AIDS is included, although other progressive conditions are not included until symptoms manifest themselves (Rights Now 1995). Under amendment, cancer is to be a ‘prescribed’ condition (GMCDP 2001).
If an impairment is covered by the Act and it is of sufficient severity and of a long term nature, the Act then additionally requires that these factors have an influence on ‘normal’ day-to-day activities.
Normal Day-to-Day Activities
For an impairment to affect the ability of an individual to carry out normal day-to-day activities it has to affect one or more of the following:
mobility, manual dexterity, physical co-ordination, continence, ability to lift, hearing or eyesight; memory, ability to concentrate, or perceive the risk of danger. (Schedule 1 Para 4.1)
In this component, disability is firmly rooted in the lack of function of the long-term severely impaired body. There is no acceptance of the myriad of external considerations that can contribute to creating disability (Gooding 1996).
These three dimensions are assumed to be representative of a common view of what constitutes a disabled person (Hague cited in Doyle 1995a, 75) and as such ‘disability’ is located in the impaired body. The DDA therefore appears to reinforce a medical model of disability. However, the Act does include some social components such as the obligation on employers to make ‘reasonable adjustments’ (Hodge 2001). So, although the DDA uses medical assessments to determine who is disabled, some social elements were recognised as necessary to remove disabling barriers.
The DDA and the environment
The DDA has attracted criticism from both academics and organizations run by or for disabled people (Barnes 1999; Drake 2000; James 2000). Some argue that the Act is in practice ineffective due to the legal complexities and costs associated with the pursuit of small claims through the County Courts (James 2000). Others criticise the structure of the Act and relative exclusion of social factors in the determination of disability:
the DDA is much weaker than the law forbidding discrimination against women and people from ethnic groups; it is full of loopholes and justifications and leaves out key areas of social life. (SCOPE 1995, 4)
With specific reference to employment issues, the DDA contains no remedies against indirect discrimination (Bourne & Whitmore 1996). It could be suggested that this is due to the potential costs and implications of indirect or secondary discrimination. For example, a requirement to hold a driving license could be challenged on the grounds it discriminates against people who, because of their impairment, could not drive. In other words, an acknowledgement that some impairments preclude the disabled person from some occupations (for example, blind people as vehicle drivers). However, the Act does contain one unique feature, namely, that organisations can positively discriminate in favour of disabled people in employment recruitment policies (Bourne & Whitmore 1996).
Additional criticism has been directed principally against two aspects of the DDA. Firstly, any impaired person seeking to bring a case for unfair dismissal under the DDA has, in the first instance, to prove to an employment tribunal that their impairment is severe enough to fall under the remit of the Act (Barnes 1999; Gooding 1996). This effectively allows justifiable discrimination against some impaired people, a unique aspect in anti-discrimination legislation (Doyle, 1996c). Secondly, the Act places an obligation on employers to ‘make reasonable adjustments’ to facilitate the employment of disabled people. The problem here is that ‘reasonable’ is not defined although it would appear to be interpreted primarily in regard to physical access and the cost of the adjustment:
By 2004 all businesses will need to make reasonable adjustments if the physical features of their premises make access to their services unreasonably difficult for disabled people. (Hodge 2001)
The phrase ‘unreasonably difficult’ is not further defined which would imply once again that it will be left to case law after 2004 to provide specific interpretation. However, despite the vagaries of language, as with the earlier quota scheme in the DPEA (1944) organisations can seek exemption if they can show compliance would damage their business (Gooding 1996). So the questions of how effective the DDA will be and how many disabled people can gain protection against discrimination will only be resolved in time, as the full provisions of the Act come into force and are then tested in the courts. One question that could be asked here is whether or not the DDA reflects traditional intellectual formulations of disability and (if it does) exactly which ones it adheres to.
The three elements of definition in the DDA discussed above which have consequential effects on functional limitations, adopt a medical formulation although when this is coupled to the requirement on employers to make reasonable adjustments in the working environment and the acceptance that, in specific cases, the attitudes of others can disable, it does acknowledges to a limited extent the social construction of disabling barriers. Together these factors can be seen to comprise a socio-medical model of disability.
Summary
The legislation reviewed identifies traditional intellectual formulations of disability. In defining the target population, impairment is used as an identifier which could be said to represent a medical model of disability. However, if impairment were not to be used, the problem would then become how to determine to whom the legislation was intended to apply. Indeed, the definition of disability in the social model uses impairment as a group identifier, defining disability as disabling attitudes and environmental barriers which disable impaired people (Finkelstein & French 1993). The problem for the social model here is that by not engaging in any analysis of impairment the model adopts a position which is not politically astute, leaving all definitions and implications of impairment firmly in the hands of the medical profession (Hughes & Paterson 1997). In the case of the DDA impairment is used as a universal concept to define group membership with legislative remedies to overcome disability predominantly relying on changing social attitudes and altering disabling barriers. Whether the DDA is a piece of effective legislation is questionable, because it applies less structural remedies to remove disabling barriers than the 1944 DPEA which itself largely failed (Hyde 1996), however, what it does represent is traditional intellectual understandings of the causes and remedies of disability.
A comparison with the DPEA (1944) highlights this point. The Act required registration of the disabled which in turn involved a medical assessment of impairment. Once group membership had been ascertained, the Act sought to change social structures and the attitudes of both employers and the TUC to enable the greater participation of disabled people in paid work. However, in hindsight it can be argued that the good sense intentions of the Act (to increase the numbers of disabled people in open employment) failed when the good sense moved from ideological thought into practical everyday common sense. Although it would be very difficult to argue that such failure was due to medical oppression.
As the concept of greater employment opportunities for disabled people made the move from ideology to everyday practice, common sense unveiled internal inconsistencies. Many workers with impairments did not wish to define themselves as disabled, hence finding any accurate statistical evidence of the numbers of disabled people in work became impractical. Employers resisted implementing a quota because for economic reasons in times of a labour surplus they wanted the ability to select the most efficient workers and not be compelled to employ disabled people at the expense of efficiency.
The TUC discriminated against the employment of disabled women and appeared impotent when faced with the question of how to return impaired people to jobs they could no longer perform. The DPEA (1944) in common with other legislation reviewed here adopted a traditional intellectual understanding of disability, that is, a socio-medical approach. The historical review undertaken in this chapter and the previous one has shown that disabled people were not passive victims of medical oppression but that they perceived and acted to remove barriers which disabled impaired people. Consequently, the social model of disability cannot be regarded as unquestioningly representing a new understanding of disability.
This thesis will show that traditional intellectual formulations of disability applied both social and medical approaches which are still evident today. Chapter 1 discussed the most recent medical taxonomy (ICIDH-2) which incorporates distinct social and medical models. However, this apparent shift in understanding by the medical profession rather than being contradictory fits Gramsci's analysis of hegemony and how dominant groups maintain power through consent. In order for a group to become hegemonic and retain this position it is necessary that the dominant group take account of the interests of other social forces which are not purely economic. In order to do this a dominant group has to go beyond its own ‘economic-corporate’ (sectional or parochial) economic interests and take into account the ‘national popular’ demands of other groups. These groups are constituted not on the basis of class relations and so their interests are not necessarily based on economic or class interests (Gramsci 1971, 161). So the medical profession can overtly acknowledge a purely social model analysis as one contributory mechanism for analysing disability which can reinforce its hegemonic social and medical traditional intellectual position. However, the stubborn persistence by some disability activists to ignore impairment as a component worthy of analysis in discourses of disability (Finkelstein 2000, 2001, 2002), would seem to mitigate against the model gaining wider hegemonic acceptance in uncritical common sense.
Although Chapters 4 and 5 have addressed one aspect of the research questions, other questions have been raised which will be addressed in the following chapters. These questions are:
• Are the two models of disability regarded as mutually exclusive in current everyday practice?
• What evidence is there to suggest that the social model is a better model for the inclusion of more disabled people in employment?
Chapter 6
Assisting the Employment of Disabled People?
In the previous chapter it was argued that the traditional intellectual formulations of disability evident in the selection of historical material presented could be seen to rely on what could be called a socio-medical model of disability. If this assertion is correct, then by drawing on Gramsci’s theory of intellectuals and his account of the differences between ‘good sense’ and ‘common sense’ it might be expected to find that NDDP demonstrates an historical continuity of traditional formulations and hence would tend to apply a socio-medical model of disability in their day-to-day activities. In contrast, SMO, an organization that claims to follow a purely social model of disability with an organic intellectual good sense approach, ought to be providing a non-disabling environment through the application of non-disabling policies, practices, procedures and attitudes.
This chapter together with chapters 7 and 8 will examine how these organisations actually operate in practice. If the social model does constitute ‘good sense’ then the organic intellectuals at SMO ought to be able to demonstrate that it can be applied in practice. A comparison of the practices, policies and outcomes of NDDP’s attempts to find employment for the disabled with those of SMO allows the effectiveness of the latter’s use of the social model to be qualitatively ‘measured’ against the more traditional historically dominant socio-medical model. It could be said that if SMO was to fail to implement the social model in practice then the hegemonic potential of this model to be accepted as ‘common sense’ is lost and thus, from a Gramscian perspective, cannot be considered to have been ‘good sense’ in the first instance.
If it is accepted that social inclusion is an agreement between the State and the pro-active citizen whereby the State provides opportunities (such as paid work) which the pro-active citizen is expected to accept (Blair 1998; Brown 2000; DSS 1998; Giddens 1998; Mandelson & Liddle 1996; Toynbee & Walker 2001) then the question can be addressed of whether, by adhering to different models of disability, one organisation provides better opportunities than the other for disabled people wishing to find such work.
Specifically, this chapter will ask two questions:
• Does NDDP use a socio-medical model of disability which, historically. has largely failed to improve employment prospects significantly (Hyde 1996)?
• Can SMO mitigate disability effectively simply by altering or removing social barriers without allowing for any direct consequences of impairment?
Before addressing these questions the following section reviews the political environment in which each operates in order to consider how they are affected by political factors beyond their internal control.
Politics and Not-for-Profit (NFP) organisations
Most organisations can be classified as operating in one of three broad sectors: private; public, or the not-for-profit (Billis 1993). The relative size of each sector has historically been determined by external factors including political influence, economic pressures and environmental change (Mulgan and & Landry 1995; Salamon 1993). However, in the recent past, as partnerships have developed across sectors, these distinctions have become blurred (Anheier 1997; Salamon et al 1997; Benner & Van Hoomissen 1992). This has in part been the result of successive Governments promoting partnerships between public and private sector organisations as the most efficient means to deliver public services (Anderson 1990; Cafferata 1997; Compact 1998; Fielding & Gutch 1989; Osborne 1997). The rise and complex nature of many partnerships has reduced the distinct nature of sector boundaries and altered funding mechanisms from the State in respect of NFP organisations. For example, there has been a move from grants as a means of financial assistance to targeted funding for the delivery of specific programmes under contract conditions (Beardon 1993; Gutch 1990; Macfarlane 1990; Mulgan & Landry 1995; Salamon 1993).
The Government’s desire to increase the efficiency and effectiveness of the delivery of public services has also included attempts to transfer private sector management practices in the public sector. This has been referred to as ‘managerialism’, defined here as the increased use of performance indicators, performance targets and monitoring systems in order to demonstrate efficient returns on State investment (Popple & Redmond 2000; Prideaux 2001). Both NDDP and SMO are, to varying degrees, influenced by these changes since funding is dependent upon achieving targets set by funding agents.
For NDDP these targets are set by the government Employment Service and directly relate to the number of disabled people who have moved from disability benefits into paid work (Drake 2000; Roulstone 2000). In the case of SMO, targets are set by one funding agent, the Training and Enterprise Council (TEC), against the number who successfully complete their programme and receive the specified qualification prescribed by the funders. SMO’s remaining two contracts funded by the ELA included targets although these were never closely monitored. This was principally due to the difficulty of quantification. However, the shift towards managerialism and a more private sector or business approach in their operations did affect SMO.
Before I joined the organisation, it had been decided at board level that SMO would apply for charitable status. The principal reason given for this decision was so that they could benefit from the advantageous tax position that charitable status can bring to NFP organisations (Chasse 1995, 4). However, discussions with several Board members had suggested this was a contentious issue which had not met with unanimous agreement.
The main source of resistance to applying for charitable status came from wheelchair users and active members of the local Disability Alliance group. Their primary objection lay in the persistence of the historical belief, held by many in the disability movement, that traditional charities had been and still were responsible for a great deal of the oppression of disabled people and that they had rarely promoted equal representation or employment opportunities – a point also raised by Drake (1994, 1996). In effect the argument was driven by the strong political implications for the organisation’s perceived legitimacy within the wider disability movement if charitable status were to be secured. However, this view was not supported by other Board members who expressed a general unease with the organisation’s dependency on fixed contracts. They argued that in addition to the tax advantages, charitable status would allow the organisation to seek some unconditional funding from a well recognised variety of sources in the charity/NFP sector (Coote 2001; Gassler 1997; Margolis 1982; Ray 1998). So, it seems that from early in the organisation’s life there already existed a significant tension between the political desire to maintain legitimacy with external stakeholders not least the wider disability movement and the demands of economic rationality.
In this instance the economic argument triumphed as SMO applied for and was granted charitable status. It can be seen here, then, that SMO’s Board members – who are being equated with Gramsci’s organic intellectuals in this analysis – were faced with a paradox in terms of what might be considered ‘common sense’. From a social model perspective and ideologically, charities were regarded as sources of oppression and something the organisation wanted to challenge, a comparable argument to that produced by Thermega some 75 years earlier. On the other hand, if economic survival could not be assured the possibility of demonstrating that an organisation can operate according to a social model could not become a reality. The political decision was taken to face any potential criticism and questions from other disabled people’s organisations in favour of an increased potential for financial viability.
One significant difference between NDDP and SMO is their means of funding which affected the number and range of clients they could each assist. NDDP operated an ‘open door’ policy funded by central government (Drake 2000; Roulstone 2000) which allowed any person currently claiming disability benefits in the pilot area to voluntarily join the scheme (NDDP 1999). SMO, by comparison, was funded through contracts awarded by ELA and the regional Training and Enterprise Council (TEC). In the following section the implications of these funding regimes will be explored and how they affected the employment opportunities for NDDP and SMO’s respective clients.
NDDP: the provision of employment opportunities
NDDP had recruited its staff from four broad employment backgrounds: the employment service; social services; voluntary organisations and former clients. These individuals were seconded to NDDP and therefore they retained their existing terms and conditions of service whilst on secondment. It will be demonstrated that this had a significant impact on how different people approached their work.
For Government, the goal of NDDP was to provide employment opportunities for 1 million disabled people (NDDP 1999). Whilst all interviewees acknowledged this, they also reported that they had three objectives: to transfer as many disabled people as possible from benefits and into paid work; to assist disabled people to engage in social activity which may include work, and to be a ‘stepping stone’ towards more suitable employment in the future. The perception of staff of the purpose of NDDP influenced the way that they operated within the organisation. Drawing on the work of Euske and Euske (1991; see also chapter 2), the different perceptions of organisational mission affected operations and outcomes will be discussed.
The majority of Personal Advisors (PAs), who seconded from the local employment service, held the view that the transfer of disabled people from benefits to work was the primary purpose of NDDP and they argued that targets were necessary to demonstrate the cost- effectiveness of the pilot. Here the role of NDDP could be regarded as a technical organisation (Euske & Euske 1991) with the aim of efficiently utilising resources in order to assist disabled people find paid employment. At an individual level, this translated into individual targets and the monitoring of the achievement of such targets in order to demonstrate progress and cost effectiveness. Those who had previously worked for the employment services saw that as normal and rational:
They (Government) have put £195 million into this new deal. It’s only a pilot because they want to know if it is worth doing. I think if it is cost effective then it’ll carry on […] My target is 25, that’s getting 25 people off benefits and into work.
(Stella, PA NDDP)
This is nothing new for us, the employment service monitors targets for everything, NDDP is just another employment service programme. (James PA NDDP)
For those who had worked in other occupations, setting and monitoring targets was more problematic:
It’s new to me… in social services we don’t have targets… it’s different here, it seems sometimes like it’s more important to meet targets than help people. (Paul PA NDDP)
This target-driven approach was effectively seen as an extension of the normal practices of the Employment Service which routinely set and monitored targets including those for unemployed disabled people (Toynbee, 2001). For some at NDDP, this entailed finding impaired people who were capable of performing the available jobs - an assimilation approach where any consequences of impairment could either be disregarded or overcome in order to enable participation with minimal effect on existing work environments and practices.
One inherent problem with this approach is that the setting of targets may skew the organisation towards finding employment predominantly for those with slight or relatively minor impairments. This practice was adopted by Thermega (see Chapter 4) and it is one which distorts claims that organisations successfully engage disabled people in work. The distortion appears because the generic meaning of ‘disability’ masks a reality in which some impairments are more conducive to assimilation into work than others (Hibbert 2000). Staff at NDDP were aware of this potential of ‘cherry picking’ for the purpose of meeting targets. Most staff accepted that some disabled people were easier to find work for than others which became apparent during an interview with Karen, a PA formerly engaged in the voluntary sector.
Karen had completed a degree in social policy, which had included a module on disability and the politics of the disability movement. She was a supporter of the social model yet had expressed serious reservations about the practical implications of ignoring impairment in the discourse of disability. It was with an air of almost resigned acceptance that she made the following observations:
I think we are creaming off people with slight or minor impairments and finding them jobs. That’s certainly what’s happening […] when it becomes less cost effective to get seriously disabled people trained and into work, I think the pilot will end. (Karen, PA NDDP)
Karen, as an organic intellectual and supporter of the social model, slipped into a common sense understanding of disability based on a socio-medical model. The reference to ‘seriously disabled people’ arguably acknowledges that the severity of an impairment can more or less disable. The achievement of a break between impairment and disability is not therefore achieved.
Within NDDP two approaches towards targets were observable: one that broadly acknowledged their necessity in relation to making the pilot demonstratively cost- effective to the Government, and a second which argued that if targets are to be set, the range of outcomes should be more extensive, for instance, including targets to engage people into education, or unpaid voluntary work. Despite what appeared on the surface to be an ideological difference in approach, in practice, all PAs adopted both strategies:
At the end of the day we’re here to get people off the sick. There’s no, ‘that’s not the case’, because it is. We’re only trying to get people off benefit, really. But you know let’s help some people while were doing that. So, if some people were being placed back into work, and this wasn’t an option at the moment, we could get them to do some voluntary work or to do some work experience then you know, that’s what we want to do. (Roy, NDDP PA).
Sure, my job is to find people paid work. But people who come here are voluntary, so what if they don’t want work or there’s nothing they fancy? I don’t like to see them just walk out, I’ll try and find them something. (Mary PA NDDP)
For others, seconded from social services or the voluntary sector, meeting Governmental or organizational targets was often over-ridden by a wish to help their clients:
I think the purpose is to help people. If by getting a job someone will be worse off than staying on benefit, then I’ll tell them. But they’ve probably come here because they want something to do, so I’ll talk with them and try and find out what it is they’re after. (Alan PA NDDP)
In the informal setting of the staff room, staff spoke of two factions within the organization: those who viewed the pilot as a logical extension of the employment service, and others (principally from social services and voluntary backgrounds) who prioritized helping people achieve whatever ambitions they held, inside or outside the labour market. This does not imply there was any observable friction between the two camps merely an informal acceptance that both coexisted with different understandings of the purpose of the organisation. Both camps divided clients into two groups: those with slight or minor impairments (usually acquired during a working career) who could quickly retrain and potentially enter new occupations, and others, usually having more severe impairments, who required therapeutic or confidence building measures - for example, as unpaid assistants in voluntary organizations - before work became a realistic option.
Whilst targets represented, for some, a logical tool with which to measure progress towards the Government’s targets for the scheme targets also had an impact on the income of staff seconded from the Employment Services:
The employment service said to us, you know, you need to work towards placing so many people into work. At the moment I think it’s about twenty five per advisor. It affects your annual report, which is linked to your bonus pack. (Roy, PA NDDP)
For other staff targets did not relate to their pay nor were they used in their appraisals and this group openly questioned the appropriateness of targets. These differences can be seen as two different ways of legitimating or resisting organizational rationality: the employment service staff accepted a technical rational discourse and other staff resisted this in favour of an institutional rationality (Euske and Euske 1991). An institutional rationality would see the mission of the organisation as primarily concerned with fulfilling a socially desirable goal of engaging more disabled people in any form of activity. For some disabled clients this would involve finding paid work for others it could imply engaging in social meetings or events. Wendy was an example of such institutional rationality. She was seconded from social services, and had for several years been involved with people with mental health problems:
Targets are a bit meaningless to me. I can’t really see the point of having targets […] also I think they should look at the whole range of outcomes and what we seem to be talking about is the people that go on to the part time or the full time work plan. And you know, come off the benefits. To me, I think outcomes should include the whole range of things that people can and or do. (Wendy, PA NDDP)
Perhaps the differing acceptance of the need and appropriateness of targets is more a question of emphasis. During conversation with Wendy, she readily accepted that for some finding work was a beneficial outcome for both NDDP and the individual and also accepted that accounting was necessary for the success of the project. Her principal objection lay in the perception that at higher organisational levels the success of the pilot would be gauged only against the placement in work criteria. Perhaps unsurprisingly Roy agreed with this view. Although he believed the prime task of NDDP was to assist disabled people migrate from disability benefits and into paid work, he also argued that a wider range of outcomes should be recognised as ‘successes’. For some staff the singular focus on work as an outcome became an irrelevance. Again Wendy presented this position offering the example of a drug abuser who had recently joined the pilot:
I saw a guy on Monday; he was very frightened of coming here. Luckily he came with his girlfriend, and luckily Linda was in on reception, and she booked him in to see me. He was really anxious, and he was very sort of tense, he was sweating and he looked really worried. So I thought it wouldn’t be right to say to him look here’s the information about the place. I think he was nervous that he was going to be stigmatized because of his drug misuse. People look at him and make all sorts of judgments, which I try not to do. (Wendy, PA NDDP)
Wendy’s example highlights one problem involved with the reliance on one dimensional targets as a measure of success. She found a support group for ex drug addicts as the first step in assisting her client together with the funding for a course at a local educational college. She explained there was little use trying to get her client straight into work because in her experience he would need to stabilise his social life first which could take some time. She acknowledged that ultimately work would probably be his best option although the road to this goal may be very difficult.
Here organic intellectual understandings aligned with the historical traditional ones of a socio-medical model. In the first instance, it was important to seek intervention to remove the impairment - in this case it was counselling to reduce the dependency on drugs. Then it was acknowledged that barriers to employment can be rooted amongst other factors such as the negative attitudes of others towards drug abusers. Wendy was concerned that the amount of effort and help in removing social barriers that she gave to people in similar situations was not properly acknowledged through the target system although a socially excluded disabled person had been significantly helped towards inclusion and potential employment.
Wendy’s example also illustrates how formal procedures were distorted by informal practices. The formal method of allocating clients to PA’s was on a ‘first come first served’ basis. However, Wendy had stated it was ‘lucky that Linda was on reception’ and consequently booked the client in to see her. An interview with Linda, a disabled former client of the pilot, explained the rationale behind the practice:
When I started, I was told to book clients in and sort of place them in order with the next PA available. But it soon was obvious that some PAs only wanted the easy cases, some were not very good with certain clients so I started to put clients with advisors who I knew would be OK. There’s only a couple who have problems most are all right seeing anyone. Yeah, I know it’s not the way it’s suppose to work, but everybody seems happy and I think the clients get the best deal out of it. (Linda, Administrator NDDP)
The training given to NDDP staff will be discussed in more detail in Chapter 7, although in essence the intention was to provide a broad appreciation of the different disabilities faced by impaired people. This could be regarded as good sense, enabling any PA to assist any disabled person through the options offered by the pilot with individual specialists, as in the case of Wendy, available for consultation if specific issues arose. However, in practice common sense distorted formal procedure, dictating that ‘difficult’ cases were better dealt with by those familiar with the specific issues surrounding the disability and (on the whole) not overtly constrained by the pressures of time and need to meet targets.
So far, two distinct groups of clients have been considered: people who can with some assistance gain employment, these usually being those with less severe impairments, and those who require greater help and support before work became a realistic option. However, NDDP also had two other groups of clients. The first of these consisted of those who were severely impaired and wanted to work but were advised against it. This advice again was based on a combination of medical and social factors. If manual work had the potential to seriously increase the severity of an impairment, doctors warned of the risk it could pose. If paid work could mean a lower level of income than disability benefit, then NDDP staff warned the client of this risk. The second group was disabled people and their employers who needed support in the work place. Elaine a PA from the employment service discussed the dilemmas she had faced in dealing with a client from the former group:
Sometimes it’s not worth a person taking a job. If getting a job means they’ll get less than on benefits then we tell them that. But other times you have to really make them think if work is the answer, sometimes it’s wrapped up in self esteem […] I had a chap a couple of weeks ago, he was 55, I think, and used to be a fork lift driver before he broke his back. His GP had told him not to do any lifting or bending because he would do even more serious damage. But he was adamant he wanted to go back and he was talking about things like laboring. (Elaine, PA NDDP)
Elaine had explained to her client the implications for both his health and the small difference in income he may expect between working and his current benefit level but he was insistent about gaining employment in a field he understood. He rejected the idea of entering any training schemes or alternative work in the voluntary sector.
NDDP can therefore be seen to be adopting a two-fold approach when assisting their clients. First they made an assessment based on his/her impairment and then made a financial assessment. If paid work was deemed unsuitable then unpaid voluntary work or training for alternative work would be offered. In other words, NDDP considered both the medical (impairment) and social implications of work. Therefore, NDDP attempted to assist people with severe impairments who were possibly unsuited to paid work to find alternative options. In the example Elaine provided, the client left NDDP without gaining any further assistance. Elaine summed up her feelings:
There’s nothing more I could do. I think one problem is that work is being pushed so hard […] they get a lot of expectations about what we can do. I don’t honestly know what’ll happen to that chap, he may have got a job already, but what else can I do? (Elaine, NDDP PA).
Elaine’s example illustrates some of the difficulties encountered when a policy that is geared towards combating social exclusion for disabled people is assimilated into the overall policy of finding unemployed people paid work (Levitas, cited in Fairclough 2000, 56). In exchange for social inclusion - a citizen’s rights to equal opportunities in work, leisure and social space (Drake 1999; Giddens 1998) - the excluded are encouraged to become risk takers when seeking work (Blair 1998; Brown 1999; Giddens 1998, 101; Harman 1997; Lindsey 2001).
The acceptance of the risk of financial loss, injury or damage from a particular course of action is not, however, always one that only affects the disabled person. For example, accepting a job on the minimum wage might involve the loss of means tested benefits that can affect a family. This problem is recognised by Government who have sought to reduce the risk by introducing working tax credits for both disabled and non-disabled workers (Disability Now 2001; Toynbee and Walker 2001). Nevertheless, disabled people face additional financial risk. Any disabled person claiming incapacity benefit loses the entitlement to reclaim that benefit if their term of employment is over 12 months and they subsequently become unemployed. The financial risk here involves accepting that the claimant will be assigned to the lower rate Job Seeker’s Allowance (Drake 2000). If they should subsequently qualify for Incapacity Benefit the claimant would find that the level of this financial support had also been cut (Disability Now 2001; Toynbee 2001). NDDP sought to minimise this risk by making clients aware of the potential loss of benefit if they accept paid work but this of course, is contrary to the Government’s target of finding employment for 1 million disabled people. However, Elaine’s example also raises the question of who is best placed to assess some of the elements of risk.
Elaine’s client had been made aware of the potential financial and medical risks if he succeeded in gaining manual work. It could be argued that as he was aware of the risks he should have been allowed to embark on any employment strategy. However, in such cases risk is not restricted to the individual. If NDDP did assist the client to find manual employment and serious injury followed the organisation would face the risk of critical censure for not preventing the potential for personal injury. Such criticism could have political implications which would bring the legitimacy of the organisation into question and hence threaten organisational survival (Meyer & Rowan 1977). If the client did gain employment, any employer would also face the risk of a health and safety investigation should a serious injury occur at the workplace. So, although policy encourages individuals to become risk takers in return for social inclusion, it should be recognised that the individual is not always the only party who faces risks when taking up paid work. In these cases it would seem unfair to link social inclusion with the acceptance of paid work when, despite showing a willingness to do it, such work could be detrimental to the individual and the decisions could be made by external actors. This again aligns with traditional intellectual understandings from almost 100 years ago. When William Beveridge considered the issue of engaging disabled people in work he concluded, ‘work for those who can, support for those who can’t’ (Beveridge 1906).
As indicated above, NDDP also had a second group of clients: employers of disabled people whom they sought to support. One organisation which formed part of the NDDP pilot partnership was a national charity that assisted many disabled people to find employment and also operated the Government’s Supported Employment Scheme (SES). Alan, one of the PAs, was employed by the Charity and seconded to NDDP and administered SES. This scheme adopts a medical approach by quantifying the ‘inefficiencies’ of a disabled worker by comparison with a non-disabled peer and financially compensates employers for the calculated difference. This scheme is presently under review, with the aim of using public investment more efficiently by removing long- standing support commitments and ‘progressing’ more disabled people from supported to open employment (Hodge 1999). However, at the time of this research, no changes to SES had been made.
Under the SES financial support for employing disabled people is determined on a case by case basis in parallel with support for individuals and employers should any difficulties occur in the workplace. Alan explained how the scheme operated:
An employer might say, if we had a little more financial support, we could take a disabled person on […] When we talk about support, the financial support is only part of it. The support we give which keeps people in work is not just financial; it’s the back up to the employer and client, to talk things through … We go in and support the client and the company. Sometimes it’s about instilling discipline in the client, you know, time keeping and things like that, other times the employer just needs to know what to do if things aren’t working out. (Alan, PA NDDP)
Alan conceded that, in respect of the employers, a mixed picture prevailed over their employment of disabled people. He could not suggest any particular industry or size of organisation as exemplars of best practice - ones in which disabled people are provided equal opportunities in their workforce as a matter of organisational policy. However, he did suggest that, in his experience, the attitudes of the disabled person played a significant part in their employment potential:
Some say, I’m a disabled person and there’re all these things which stop me. Others just say, nothing is going to stop me doing whatever it is, and basically they are usually looking for solutions rather than problems [...] You see that at work as well, some expect that all the problems should be sorted out for them, while others want to help and advise on what is the best way to do things. It’s not all about health; it’s not all about barriers. Sometimes it’s one, sometimes the other but usually I find it’s both. (Alan, PA NDDP)
With few exceptions, all participants in this research, including stakeholders of SMO, agreed with Alan’s assessment. This could, of course, invite the criticism that NDDP sought to individualize disability and thus reinforce a medical model. However, although NDDP did consider some implications of impairment and the consequences and risks this might incur at work, consideration was also given to people’s attitudes towards disabled people and the removal of disabling social barriers. Once more, traditional intellectual understandings are dominant in this approach in which common sense acknowledges disability as a combination of social and medical factors.
There is, however, one other group of disabled people who gained employment through NDDP: disabled staff. Three NDDP staff self-defined as disabled people and all three had been given employment with NDDP after approaching the pilot as clients. All three had worked before becoming impaired and independently defined disability as a combination of restrictions caused by impairment and negative attitudes by their former employers. Mark, a former school teacher, had spent several months unemployed after a nervous breakdown that he attributed to stress at his former workplace. He considered his current position as administrative assistant as a step back into a more appropriate career. Mark’s experience was very similar to his two colleagues at NDDP, Sally and Linda:
My self esteem and confidence were so low […] I was first of all sent on an employment rehabilitation programme that was just a matter of three days a week getting up for a 9 o’clock start and a 5 o’clock finish […] it gave me more confidence. Then the chance of a job came up here, but I was still short of confidence, but the whole team are very supportive. I suppose generally I wasn’t a person lacking in confidence but the wheels came off and I was set in depression I just lost my way of living. What I was offered from the pilot was the placements and they were good for me. (Mark, Clerical Assistant NDDP)
I was a personal assistant to the MD. He found out I had been treated for clinical depression and that was that. They said they couldn’t be sure how I would be in the future. (Sally, Clerical Assistant NDDP).
I was a physics teacher before the injury. I was off work for a long time and because I use crutches now, they didn’t think I would be able to carry on, because of the bending and moving I’d need to do. (Linda, Clerical Assistant NDDP)
The employment of disabled people inside the organisation benefited both the disabled employees and NDDP. All three employees welcomed the opportunity provided by the pilot and were expecting to progress into more suitable careers in the near future. By employing disabled people, the organisation also benefited in two ways. First of all it improved its ‘success’ rate in meeting targets and, secondly, it served to protect it from any criticism regarding the number of disabled people employed by the pilot. The project thus employed approximately 25% disabled staff, albeit at lower grades. However, after the completion of the research it was learned that Mark had been promoted to personal advisor with his administrative role filled by another disabled person - another former client - and so the employment ratio of disabled to non-disabled rose to over 30%. The promotion of Mark also belied the criticism that NDDP only employed disabled people at lower organisational grades.
Towards the end of the research in NDDP, some basic statistics were obtained on the performance of the pilot. The statistics were presented as the 1000th client had sought assistance from the organisation. Out of the 1000 people who had sought assistance, approximately 200 had been placed on training, educational or rehabilitation courses and 40 had found paid employment. The remainder were still ‘active’ cases as no suitable alternatives to their current status had yet been found. However, to mirror the criticisms raised by NDDP PA’s, the statistics did not record many outcomes where disabled people were assisted in ways other than engagement in paid work. If the target was to move disabled people from benefit and into work, then the 40 successes represent only 4%. However, if those engaged in education/training are also considered as successes, the rate moved to 24%. This figure does not include those who were assisted through other means, for example in finding unpaid voluntary work. It should be noted, that in relation to work outcomes there was no statistical evidence produced regarding job retention rates. It may be therefore that some who had made the transition into paid employment, may also have made the transition back to unemployment. Unless they were then to approach NDDP again, there was no method of recording such movements. Therefore, although there is evidence of the ‘success’ rate of NDDP it should be considered in parallel with the reservations stated.
The above discussion demonstrates that within NDDP, staff applied different approaches to fulfil their mission. For some, the necessity to meet demonstrable targets produced a technical approach (Euske & Euske 1991) geared towards the most efficient means of transferring organisational resources to engage the greatest number of disabled people in paid work. This could be more easily achieved if only slight or minor changes to existing work processes (such as the provision of ergonomic seating) were required to enable a disabled person to perform efficiently in an existing job. This process complies with an assimilation approach and staff recognised that this led to ‘cherry picking’ those clients who could more easily enable them to meet their targets. As the targets referred to the homogeneous concept of ‘disabled’ they could be more easily achieved by prioritising resources on those clients who were more capable of assimilation - those with less severe impairments.
However, for the members of staff who felt that targets were inappropriate an institutional approach (Euske & Euske 1991) and a focus on integration rather than assimilation was adopted. In this case, staff overlooked the demand for producing the desired outcome of the placement of disabled clients in paid work and instead provided courses of action (with the agreement of clients) which although it might not eventually result in paid work could, nevertheless, improve other forms of social engagement. Hence whilst the organisation did have some limited success in transferring disabled people from benefits to paid employment, staff felt that this narrow definition of ‘success’ was inadequate and should be extended to include those disabled people that had taken up alternatives to paid employment.
Significantly, not one of the members of staff who were interviewed defined disability solely in terms of restriction caused by impairment (a medical model) or solely in terms of a disabling environment (a social model). Staff consistently used a definition which combined both medical and social factors. Consequently it could be asserted that NDDP displayed traditional intellectual formulations of disability which can be represented as aligning with a socio-medical model.
SMO: the provision of employment opportunities
This section examines the employment practices of SMO in order to determine whether an organisation with ideological underpinnings based on the principles of the social model of disability is any more successful at finding work for disabled people.
Unlike NDDP, the client base of the SMO was determined by their contractual commitments. Sharon, the chief executive officer (CEO) and a wheelchair user, had managed the organisation from its outset up to its current charitable status. She was a prominent member of the local Disability Alliance group and had completed a Master’s degree in disability politics. Ideologically, her position leaned towards left-wing politics and she had a firm belief that the social model of disability provided a workable framework within which the organisation might offer better opportunities to engage disabled people in work. Sharon was the first person interviewed at SMO and explained the early battles that the organisation had fought to overturn what, in her opinion, represented the dominance of the medical approach taken by employers and funding bodies:
We operate to a social model of disability, look for self definition. It used to be that the referral notes had a long list of ‘do you have this complaint, do you have this, do you have the other’, but I said it’s not on! You know, to what use will you put this information? We’ve had some struggles like that, and you still get employers wanting to know if someone is going to have an epileptic fit, and ‘what do I do’? And there is a legitimate need to know in those cases. (Sharon, CEO, SMO)
This comment begins to illustrate the internal contradictions within the social model when attempts are made to apply the ideology to a practical context. The political good sense of ignoring impairment as a cause of disability does not survive the transition to the common sense needed to actually implement the model. Sharon attempted to remove any references to impairment from the records of disabled people except when employers asked about people subject to epileptic fits. Here, Sharon accepted that employers have a legitimate right to know about such a medical condition. Withholding such information could have health and safety implications if an accident were to occur in the workplace as a consequence of this impairment.
However, it could be argued that if all information of impairment is withheld from employers, then their ability to arrange the working environment in a way that might enable the inclusion of disabled people would be severely restricted. In this regard, SMO could be challenged for acting as a gatekeeper to the inclusion of disabled people. If employers are denied access to details of impairment then the identification of many disabling barriers could only be determined by SMO.
By controlling which impairments can be legitimately divulged to employers, SMO can be seen to be operating with political rationality where control of resources, including information, becomes a prime organisational reserve (Euske and Euske 1991). SMO created a relationship with funding bodies which allowed the organisation to operate on the premise that the social model could be implemented to improve the employment potential of disabled people. They claimed to achieve this by reassuring the disabled community that an organisation run and controlled by disabled people provided a progressive model which privileged disabled experience over an oppressive medical determination of disability. Hence, at a formal policy level, SMO adopted contradictory common sense, organic understandings. SMO proclaimed an allegiance to the social model whilst accepting that some impairments do impose restrictions which could be disabling. SMO’s attempt to disregard any consequences of impairment in their internal employment practices will be analysed later in this chapter. What follows is a consideration of the effect that contracts had on the organisation.
Sharon gave an account of SMO’s contracts:
We have contracts with local social services. One is our ‘into work’ service. It’s about finding jobs and work placements for disabled people. We’ve got a team of six people, two are the ‘into work’ officers and one of them is the team leader. It’s their job to go out and find the jobs, the placements, the employers, and to find the disabled people. Then we have four people whose job it is to support the disabled people as they get into that work placement, job, or whatever. We prefer the support to be on a tapering basis, it can be for seven hours a day at first, but our aim is to reduce it eventually to be just in the background. There are standards in there, we’re supposed to deal with about 90 disabled people a year, with x number of employers - so many outcomes. They’re nearly all quantitative. So that’s the ‘into work’ contract. And then we have the ‘guidance’ contract. That is to provide training for x number of disabled people in any one year, in work related skills - so not about particular jobs, but skills about being at work. For some people it starts off with things about punctuality and personal presentation, and stuff like that and the contract is to provide them in three different work environments so that people can get a range of experiences. One is based here in the IT workshop, and that is very computer/office type environment; we have a retail environment, it’s like a charity shop […] that gives a lot of different types of skills, like customer contact, money usage, display and all kinds of different things. Then we have an outdoor site, really it’s a minibus, and that minibus has contracts, it has one contract with ELA to do a recycling project collecting bags, you know, like charity shops, picking up bags and delivering them to the shop, and they also do other outdoor kinds of stuff like ground clearance and maintenance. And we’ll do assessments about work readiness or, they can come and spend up to three years with us in terms of preparation for work. There’s three criteria, they must be a local resident, they must be a disabled person, and they must be looking for work. We’ve also got a contract with the TEC, to provide an education programme, which is basically about literacy and numeracy, we have 18 students who could be classed as having minor learning difficulties, behavioral difficulties, disaffected, for a variety of reasons, and what we do is find them a two day work placement, with half days in the classroom, we’re working towards NVQ level 2 I think. The TEC contract is fairly tight; the TEC’s are very outcome driven. (Sharon CEO SMO)
This rather lengthy account of the organization’s contracts portrays an organisation that is significantly engaged with a range of disabled people and employers in an attempt to provide a range of initiatives. Effectively, the organization has three types of contracts: ‘into work’ which entails finding paid work and supporting disabled people in employment; ‘guidance’ which entails preparing disabled people for the labour market and can last up to three years, and the TEC (Training and Enterprise Council) contract which combines a taught course with work experience. These contracts are delivered by teams of staff dedicated to each contract and (as with NDDP) SMO targets are set.
Whilst this account appears to be fairly straightforward, when the contracts were discussed with the staff, their delivery was rather more complex. One of the rationales that underpins the social model is that historically non-disabled people have made decisions about how disabled people will live their lives and that this hierarchy of control should be removed (Brisenden 1986; Hunt 1966; UPIAS 1976). If the category ‘disabled’ includes different forms of impairment therefore one might expect that in an organization that claims to be run according to the principles of a social model there would be no hierarchy between disabled people. As the following account demonstrates, this was far from the case.
Carol was the team supervisor on the ‘guidance’ contract. She had worked for SMO for 18 months after 8 years as a trainer in the private sector. It was during an informal conversation, before a board meeting and after a staff training session on disability access, that the disenchantment of many staff about the disabled senior managers first became evident. Carol confided that, in her opinion,:
This organisation is run by a small group of wheelchair users. They’re all in the disability movement and I think they sort out how this place is run. (Carol, Supervisor SMO)
This assertion was later substantiated by other disabled and non-disabled staff at various levels in the organization. So, for example, Andrea stated:
I often think the only way to get respected here is if you declare you are disabled, and top of the pile is if you turn up in a wheel chair. (Andrea, Manager SMO)
Clearly whilst ‘disabled’ may be used as a homogenous concept, staff in SMO felt that different forms of impairment were classified as more or less disabling and that the most disabled group of all were those who were physically impaired and wheelchair users. There was therefore a perceived hierarchy of disabled people. However this was not only a result of particular impairments, some staff felt that it was also based on a perception of how politically active individuals were believed to be. Hence in discussing my own position within the organization, Tim suggested:
They aren’t keen on you because you’re not one of them. If you were in a wheelchair and went on demonstrations or the like, you’d have more chance. I think they are wary of you. (Tim, Trainer SMO)
The ‘wariness’ towards me, may of course have been a result of my identity as a researcher. However, given the visible nature of my impairment, my identity as a researcher cannot be wholly divorced from my impairment which was in part responsible for SMO inviting me to take up the position of Treasurer on the Board (see Chapter 3). The ‘wariness’ could have been a result of my ‘difference’ in relation to the type of impairment I have. In other words not being a wheelchair user and not being perceived as an active member of the disability movement made me different and therefore to be treated with suspicion.
The perceived hierarchy of disabled people with different forms of impairment was also raised in relation to their representation on decision-making forums, as Chris pointed out:
I sometimes wonder about this place, we preach equality but it is obvious who is in control and considering all our contracts deal with learning disabilities, I ask myself, why are no learning disabled people represented on the board? (Chris, Board Member SMO)
What Chris is alluding to here is a recognition of a contradiction between a social model which suggests that disabled people should have a voice in the nature of the services they require and the practices within SMO in which decisions are made on behalf of people with learning disabilities. In this case then it is not non-disabled people who are assuming to know what people with learning disabilities require but rather other disabled people with different forms of impairment. Although all interviewees were supportive in principal to the social model, many, like Carol cited below, found it difficult to accept the inconsistencies between the theory and practice.
The total rejection by the disabled members of the Board of any link between impairment and disability had an impact on the ability of staff to deliver the contracts because they felt unable to explain the problems they were experiencing without making reference to the nature of the impairments their clients had. Hence Carol reported:
Guidance clients come to us through In Work. So if you like, In Work do our recruitment which is problematic and advantageous at the same time. It’s advantageous because it saves us going out and recruiting people, but problematic because the people who come through on the books can be difficult cases. In Work take all the cases that can go directly into work, they leave us people who may have serious problems for example attention problems and we have to train them. It can be very difficult [...] I know it’s not very popular in here but we have a certain standard that people have to have to enter. (Carol, Supervisor).
Carol continued to report that the majority of her clients had learning impairments and admitted that although formal entry criteria existed there were no formal entry assessments or procedures to gauge a person’s ability. Informally however, assessments were conducted. Carol argued that this was required because from operational experience some people with severe learning difficulties may not benefit from a work focused training programme.
Here, the informal practice of assessment could be regarded as representing a traditional form of common sense. However, formally to admit the practice by introducing a rule which required all potential clients to undergo acceptance assessments would conflict with the espoused social model which was seen both internally and externally as good sense. This could be politically damaging to the organization which would be seen by the wider disability movement and by the funding agents not to be complying with a social model. It would also be damaging for individual members of staff who supported such a policy because they too would be seen by the disabled members of the board as individualizing disability and thus reinforcing a medical model. Consequently, whilst these practices existed informally they could not be formally declared.
The interview with Carol and frequent discussions both with her and other SMO staff over the following months led to the conclusion that the methods used to prepare people for work did not vary in any significant detail between organisations. As practiced at NDDP, one department of SMO - In Work - could be seen to be ‘cherry picking’ certain people who were more suited to employment. For those not ready for work, training as a form of work preparation was given with an informal acceptance that they were unlikely to ever be able to be engaged in paid work. The principal difference was that staff at SMO were unable to acknowledge openly organisational practices which demonstrated an admission that impairments limited a person’s suitability for work. Although this fact was denied because it directly contradicted the good sense of the social model nonetheless, in practice, the organic intellectuals in SMO adopted common sense traditional understandings which acknowledged that, in addition to environmental and attitudinal barriers, some impairments in themselves can disable. In other words, in reality they were forced to apply the common sense of a socio-medical model. When Carol was asked if she or anybody else had raised these apparent contradictions with senior management, she laughed, cynically and replied:
Yeah, I brought that up at a training meeting. She (CEO) said to me, ‘we operate to the social model of disability and it’s written in your contract that you must do the same. Let me remind you that you are on probation and I think it would be wise for you to remember that’. (Carol, Supervisor SMO)
Clearly such a response effectively silenced any further discussion. The theme of ‘silencing’ was a recurrent issue in SMO which will be discussed in more detail in the following chapter. For Carol and many other staff, the unsatisfactory resolution to the contradictions outlined above served to alienate them inside SMO and the clear divisions between disabled and non-disabled members of the organization were often made apparent.
However, some of the reasons for the divisions were based on factors other than whether someone was disabled or not. It was evident that many of the contradictions faced by SMO were a result of the contracts awarded to the organisation and hence the client groupings they were obliged to assist. Alison, a contract manager, had previously worked in the private sector and was Carol’s line manager. She supported the principles of the social model but again found it difficult to apply it in practice. Alison gave an account which suggested that the problems the organization was experiencing were related to the type of impairment of the majority of their clients and to the ethos and history of the contracts provided by the social services department of ELA:
I’ve never worked on a contract like this where there is absolutely no inventory whatsoever. All social services are interested in seeing is that you (disabled client) are in guidance. In the past, all the numbers that were on ELA’s polygon project - that was the name for guidance - were on a holding project. People were supposed to be on for a maximum of three years. People were being referred from care managers [social services employees]. It was particularly seen as a service for adults with learning disabilities but they were being kept on the books for five years, seven years, eight years - they were not going anywhere. I don’t know what they were doing for seven years to be honest. (Alison, Contract Manager SMO)
The ‘ELA’s polygon project’ was the project run by the ELA social services department which was then contracted out to SMO and constituted their ‘guidance’ contract. As with SMO the purpose of the project was to prepare disabled people, primarily people with learning impairments, for the labour market. When SMO were awarded this contract Alison reported that they attempted to introduce more effective procedures and to make links between the activities of the ‘in work’ initiative:
I mean what we do is totally different. What we tried to do was change the whole culture of what this project was all about. Basically it’s now a stepping stone to work. It’s not a long term project, it’s not about baby sitting people for three years and then sending them out to work. At the end of three years, some of them have so many if you like ‘support needs’ what we needed was ‘in work’ to support people into work.
However, despite their good intentions, Alison reported:
But work wasn’t a realistic option, or wasn’t the option they wanted. What they wanted was a secure environment, the social life that was on site, but not really the work orientation or development side of it. (Alison, Contract Manager SMO)
When SMO accepted the ELA contracts it attempted to alter the original institutional rationality (Euske & Euske 1991) under which the contracts had previously operated to one of political rationality which underpins the social model. Despite this, in practice, we find traditional common sense understandings which acknowledge that, for this client group, although some may be able to find paid work for others the consequences of impairment cannot be overcome by altering environments alone. Hence although SMO followed a political rationality which formally gave them the necessary legitimacy with stakeholders and funding agents, they had to harness this to a technical rationality where outcomes were demonstrable and more easily quantified. As the technical process was dependent on being able to convert the input (learning disabled people) to output (employed learning disabled people) a covert informal selection policy existed which acted effectively as a quality control system. This raises the question of what happened to those who did not meet the entry criteria, and those who failed to gain work as an outcome of the project. After a lengthy pause Alison speculated:
I suppose people who don’t make it onto the project remain the responsibility of social services. I don’t know what they do with them because obviously we have taken over their scheme. For the others I suppose if nothing else we’ve given then some self confidence and hopefully helped them to live independently. (Alison, Contract Manager, SMO)
Alison effectively argued that entering the project did not harm any clients and may have assisted some although their financial (benefit) status after completing a prolonged training course was unclear. An obvious ethical issue arises from this because if the original institutional rationality of the contract run by ELA was partly to facilitate social interaction where it is recognised that many would not be capable of or desire work, is it ethically acceptable to deny this group of disabled people access to opportunities to socialize? Some staff argued that the denial of social activity to those unable to work was not acceptable:
What it’s about is that they come here for a day out. We try and help everyone, but for some, work isn’t the thing. I don’t try to think about work for them, they don’t want it and it’s not feasible anyway. (Peter, Trainer SMO)
They (senior management) say we are here to do things differently, but how can we? I don’t know why we pretend to be an employment trainer, why can’t we just admit the best we can do is try and help in whatever way we can. It’s just a pretence! Many of our clients haven’t a hope of getting or holding down a job. (Clare, Trainer SMO)
The difficulties staff experienced in relation to finding employment for learning disabled people was not restricted to employers in open industry. SMO itself found this issue problematic, as Robert pointed out:
Some of the trainers have asked me, why do we say removing barriers is enough to find them (clients) work, when we can’t even do it here? It’s a fair point, we don’t employ any severely learning impaired, and so what chance is there for them outside?
The above quotations would suggest that given the nature of the client base an institutional rationality would be more appropriate for SMO. Alternatively if a political rationality is a pre-requisite, then as Robert suggested, the organization requires contracts which enable them to assist people with different forms of impairment:
The problem is, funding is from contracts to help learning impaired, we could do with more contracts which are not so strictly tied. (Robert, Manager SMO)
The adoption of such an approach would, however, undermine the claim that it is not the individual impairment which restricts the ability of disabled people to gain paid work – an argument which was unlikely to be accepted by disabled members of the Board.
Despite spending several months inside SMO the political nature of the organisation made it impossible to raise this issue with senior management. As Carol illustrated above, the organisation was particularly sensitive to internal challenge and the fear was that if my views appeared critical of SMO’s operations the relatively unrestricted access to staff would be ended - hence to some degree I was also silenced.
During earlier discussions with the CEO she did not mention that the majority of clients were people with learning disabilities. This was not just because the social model which she supported requires a focus on the social environment rather than the individual but was also because to have done so was potentially financially damaging for the organization. Contracts with ELA amounted to over £600,000 per year, approximately 85% of SMO’s income with the remainder coming from the TEC. During the 12 months spent as Treasurer, I was aware of only 2 clients who had gained employment in the open job market. These two posts were as shopping trolley attendants at a local retailing organization. It is generally recognised that learning disabled people are amongst the least likely in society to be engaged in work (Hibbert 2000). One might therefore question the sagacity of adhering strictly to a social model which ensures the organisation cannot offer a defense for their lack of success on the grounds of the consequences imposed by specific impairments. Therefore, the task undertaken by SMO is more difficult than that of NDDP where a wide variety of impaired people were assisted. However, if SMO used this argument in defense of its record then it could only be interpreted as an admission that impairment does indeed contribute disproportionately to disability. The outcome was that SMO had become trapped by its own political rationality. While loudly rejecting impairment as a contributing factor in disability it demonstrably recognized that their client base presented specific impairment-related challenges.
As may be recalled from Sharon’s description of the contracts SMO had been awarded, clients who were served under the TEC contract included unemployed young people who had ‘minor learning difficulties, behavioural difficulties, or were disaffected’. With the exception of ‘minor learning difficulties’ one might want to question whether these individuals could be classed as disabled. This was an issue which also puzzled some members of staff. For example, when questioned on this Mark replied:
Those kids can be very violent and I’ve had one staff member off for over 4 months with stress. You said are they disabled? Well, I don’t know. (Mark, Contracts Manager SMO)
Given the difficulty staff had with questioning whether clients were suitable candidates for the services SMO is able to offer, it is perhaps not surprising that Mark was at a loss to evaluate whether such a group could legitimately be seen as disabled people. When questioned about why SMO had accepted the TEC contract, Mark replied:
The reason we’ve accepted the TEC contract is because of the money. But I’m not sure if it pays. All I know is that the TEC want to examine everything … trainer qualifications, quality systems and client monitoring and reporting. The problem I’ve got is that we’ve got none of these. We’re used to ELA contracts, they fund you against client numbers they provide and that’s about it. The TEC contract causes us lots of grief. (Mark, Contract Manager SMO)
The ‘grief’ the TEC contract generated was evident at board level which spent a disproportionate amount of its time trying to resolve such problems. A key problem was a result of the target and monitoring systems imposed by the TEC and were outlined by Ken who supervised the contract:
They’ll come in and make you do self assessment reports, they’ll come and observe your trainers delivering, they’ll want to see your paper work, they’ll want to see your guidance plans, and they’ll want to see how people are progressing. (Ken, Contracts Supervisor).
During the time I was company treasurer there were no discussions at Board meetings regarding the progress of ELA contracts. On the other hand, a detailed examination of the progress of every client on the TEC contract was regularly conducted. This was because the TEC funded against the organisation demonstrating that key training objectives, determined by the TEC, had been made. These created a number of problems for SMO.
The first problem was that the TEC contract required significantly more resources to monitor and claims for progress payments were dependent on monitoring data. This was particularly difficult given, as discussed above, that many of the clients had violent outbursts and were often unwilling to co-operate with the programme. A second problem was that the TEC had conducted a quality audit which required the organisation to implement quality systems and provide evidence of trainer qualifications. (The issue of trainer qualifications is fully discussed in the following chapter). A third problem arose as a result of the completion of the first one year contract with the TEC in which SMO had managed to break even on cost. The TEC had then offered a second contract for the same price but had increased the numbers of clients from 18 to 32. This second contract was dependent on the findings of their quality audit being implemented and then followed up by a second compliance audit.
As Treasurer, I argued that the second contract should not be accepted because it did not meet the organization’s mission and more importantly the potential to lose money seemed markedly increased. However, I was outvoted by the Chair of the Board and CEO who argued that politically the organisation did not want to appear to lose one of only three contracts. The rationality behind accepting what were, in effect, inferior terms was explained by the Chair of the Board. He argued that significant lessons had been learned from the first TEC contract which meant mistakes would not be repeated and if necessary staff could be switched from ELA contracts if the TEC contract got into trouble.
The outcome of the decision to accept the second TEC contract cannot be reported because I resigned as company treasurer shortly after the second TEC contract had been negotiated. This resignation was precipitated by the acceptance of the second TEC contract because, as Treasurer, I would have been implicated in the potential loss of revenue to the organization. On both ethical and financial grounds I did not wish to be associated with such a decision.
This incident again can be seen as providing evidence of an underlying political rationality. SMO presents an image of a stable organisation renewing contracts in order to reinforce the appearance of legitimacy in terms of the social model by giving an impression of competence and an ability to fulfill contracts in order to reassure stakeholders. This political rationality outweighed economic considerations which strongly suggested that if break-even was achievable with 18 clients then increasing to 32 without increased income was a significant risk. Effectively what was proposed by the TEC was a contract which significantly reduced the payments made for each client.
So far the discussion has concentrated on the problems SMO encountered in terms of its political affiliation to the social model and the underlying political rationality which informed its practice. The following section will discuss the internal employment practices at SMO which emerged as a significant issue for staff in the organization.
SMO internal employment practices
SMO employed 7 people with a variety of impairments, representing approximately 25% of the workforce. Several staff indicated that the organization had a high rate of staff turnover and pointed out that in two cases disabled people had taken the organisation to an Employment Tribunal for unfair dismissal. These cases occurred prior to the start of the research and therefore were raised with the CEO. Her assessment of both cases was that the individuals concerned simply did not want to work. With further probing, she elaborated on one of the cases:
The problem was he said he had a sleep disorder and needed to sleep whenever the need arose. You can’t run a business like that, it’s not only when he wanted to sleep, and he wanted to just lay down wherever he was. I think he was just lazy and didn’t want to work. (Sharon, CEO SMO)
SMO had a positive discrimination employment policy where any disabled person would be guaranteed an interview for any posts advertised, irrespective of any educational requirements or previous work experience. This policy went further than many other equal opportunity employers as a declaration of disabled status guaranteed unconditionally an interview for any advertised vacancy. SMO won the Industrial Tribunal case because it was considered that the claimant represented a health and safety hazard both for himself and others if an emergency arose.
It seems perverse that SMO won the case because the tribunal made a decision based on what SMO would regard as a medical model understanding of this ex-employee’s disability. SMO’s case relied upon their health and safety concerns as a direct result of the individual’s impairment. Although the example cited by the CEO could be considered an exceptional case, a number of issues occurred during my period as Treasurer and were not regarded by SMO's staff as unusual.
Michelle, the administrative supervisor, detailed the case of an employee who had been dismissed after 10 weeks with SMO on the grounds of poor performance:
Laura the clerical assistant, I was on the interview, gave an outstanding interview, but once she got the job she just didn’t work. She said in all the questions we asked at the interview she thought she would be able to do the ones that best suited her disability […] She wanted to pick the jobs she could do and leave anything she thought was too stressful. (Michelle, Administration Supervisor SMO)
This example highlights the tensions and contradictions at the heart of SMO’s own recruitment policies. Positive discrimination enabled inclusion in paid work but their understanding of assimilation implied that disabled people were expected to fit into existing job roles regardless of any real problems caused by their impairment. For those who could not perform all the tasks associated with a pre-existing job, SMO adopted an essentialist policy of individual condemnation carefully sidestepping any correlations between performance and impairment and instead falling back on a rationality that implied that the fault lay in individual laziness or poor performance. Paradoxically, the defense offered by the disabled person was a belief that the work would involve an integration strategy and an acceptance of the difference caused by impairment which would then allow jobs to be redesigned in order to remove, where possible, any disabling elements. It may have been the case that this employee was lazy and not prepared to work but in a second case the consequences of impairment in relation to expected production are clearer.
Joanne, the Administration Manager, was involved in arranging some aspects of running SMO’s charity shop and held strong views on the levels of staff turnover. She had raised many issues during the interview regarding the shop but was particularly anxious to express her views on the position that Martin, the blind manager, was placed in. Martin was totally blind yet a significant amount of his duties included accepting the donation of clothes; assessing whether items were fit for sale; whether they required cleaning, and sorting garments according to size, colour and potential age ranges for customers. These were tasks that a blind person would clearly struggle to complete and Joanne felt he should not have been appointed to such a job:
It’s quite ridiculous isn’t it? Martin is probably quite capable of doing other things but they (senior management) just saw he’s disabled, and said that’s fine let’s just give him the job. Management did not consider whether he’s capable or suited to it. Some people are suited to certain jobs, of course there’s also physical restraints which prevent some disabled people doing some jobs. (Joanne, Administration Manager SMO)
However, senior management was able to accommodate Martin’s needs as Joanne explained:
They’ve got a support worker working for Martin because basically he’s not capable of doing his work. How can he sort colours or say if something needs cleaning? So, is he doing the job? Or is his support worker doing the job? I don’t know, I don’t know really what it is, but it’s got to be awfully hard really on him. (Joanne, Administration Manager)
Once more the impaired body has to be taken account of and, despite social model politics, a common sense understanding of the relationship between impairment and disability leads to a socio-medical model being used in practice. Although the use of a support worker might be considered by some to be an acceptable integration strategy in this situation it effectively became a compensatory strategy that resulted in someone else doing the work and thus was little more than an admission of personal deficit or tragedy (Oliver, 1990). In effect it was likely to have increased this blind employee’s sense of inadequacy and failure rather than raised his self-esteem – a factor Joanne recognised.
In this case, neither assimilation nor integration can overcome the consequences of impairment as no model of equality can help a blind person detect colours. However, integration could be utilized to redefine work roles and in this case all that was required was that the job specification be readjusted to ensure that the ability to detect colour and so on was not part of a blind person’s job description. SMO’s interpretation of its political position as a social model organization led them to believe that this strategy would compromise their legitimacy since it acknowledged what they see to be a medical component in the cause of Martin’s disability. The hypothetical question of how she thought SMO would eventually resolve the problematic relationship between impairment and disability was posed to Joanne. Although her response was only supposition it did reflect a general view of the rigid hierarchical structure many thought SMO were destined to achieve:
I think what will happen is they’ll keep giving the shop manager’s job to anyone who applies for it. Eventually someone in a wheelchair will get it. Then it’ll work! The shop’s been adapted, a double bay at the back has been left for a disabled driver and they’ve put in ramps and the rest of it. (Joanne, Administration Manager SMO)
Clearly the idea that people with certain types of impairment are easier to find work for than others is not restricted to the client groups SMO deals with.
Summary
The discussion of how SMO fulfilled its mission clearly demonstrates that the application of the social model is, in practice, extremely difficult. The political rationality (Euske & Euske 1991) SMO adopted was based on social model ideology. In order to convince the wider disability movement of practical adherence to the social model any dissenting internal voices had to be silenced. However, to ensure funding agents of their financial competence the organisation was required to display itself as technically competent in transferring financial investment into demonstrable outputs by showing disabled clients engaging in paid work. However, behind the rhetorical mask, ELA funded SMO against an institutional rationality which did not require demonstrable work related outcomes. In effect, SMO and NDDP applied both technical and institutional rationalities when assisting clients depending on whether paid work was an achieveable outcome. A significant difference appears where SMO is required to demonstrate that the social model can be practically engaged to improve employment opportunities.
It has been demonstrated that, despite senior management’s commitment to the social model, even the CEO accepted that some medical conditions should be disclosed to employers and that the only reason for this concession was to make the employer aware of the impairment and its consequences. In the specific example of epilepsy used by the CEO, if an individual had a seizure at work then it would defy common sense not to seek medical aid to stabilize their condition. Such an acceptance acknowledges that medical intervention can be beneficial and not necessarily oppressive.
In the time spent as Treasurer at SMO and in all the interviews that were conducted it was apparent that although many of the staff described disability as a product of disabling environments they also recognised that impairments imposed limitations on performance which could not always be ignored. However, questioning the wisdom of the social model or exposing inconsistencies in the theory and practice of the social model was ruthlessly silenced in order, it seems, to maintain the claim that the social model represents good sense. One consequence of this was that the organisation was perceived by many staff as oppressively hierarchical because emphasis was heavily placed on the selective removal of disabling barriers which privileged people with particular impairments while turning a blind eye to others.
It can be argued that in practice SMO actually applied a socio-medical model and tacitly acknowledged common sense understandings of disability by demonstrating through their practices that participation in work was not a realistic option for many of their learning disabled clients. SMO resorted to the rhetoric of equality through the social model although this was only achieved at the cost of creating an oppressive hierarchical ‘regime of truth’ (Foucault 1977) which privileged some definitions of organizational reality and silenced others. This in turn enabled staff to question whether the social model could be implemented in practice.
Conclusion
This chapter has shown that both organisations apply traditional intellectual formulations of disability which have been termed as a socio-medical model. In both organisations this model informed practice either overtly in NNDP or covertly in SMO. In other words it was the socio-medical model which had achieved the level of common sense. Whilst the social model may have been accepted as a political ideology by some people in SMO, the problems of implementing it in practice undermined the possibility of it becoming common sense and so hegemonic within the organisation. By comparison, NDDP did not face similar inconsistencies. They operated to a socio-medical model which was aligned with traditional intellectual formulations of disability and its many causes.
Two areas existed where SMO and NDDP had the potential to directly influence the employment of disabled people: as employers and in fulfilling their contractual obligations. Both organisations employed between 25% and 30% disabled staff. In absolute terms NDDP employed 3 and SMO 7 disabled people. However, this relatively high employment ratio ought to be viewed in a political context. Both organisations had the same mission to find disabled people paid work, and this was bound to influence their own internal employment practices to some extent. The employment of above average numbers of disabled people by both organizations served to demonstrate that the low employment rates of disabled people in all sectors of the labour market, including the NFP sector and central Government (Hawes 2001; Hermeston 2001; Hibbert 2000) could be raised. Politically it also served to protect both organizations from accusations that they were unable to implement practices which they advocated to other employers.
Whilst a comparison of the internal employment rates of disabled people demonstrates no significant difference between the two organizations, at a quantitative level there were significant differences in terms of their ability to find employment for disabled people.
Although I did receive some statistical information from NDDP, it is difficult to put the figures into context because no information relating to the targets set by government was available. However, if the results of the pilot mirrored the other 63 agencies operating NDDP pilots then it might be expected that targets were not reached. Figures from all 64 agencies showed that only one third of the targets set by government, in terms of finding paid employment for disabled people in receipt of disability benefit, had been achieved by January 2002 (Disability Now 2002, 3). Of those who had taken part in the scheme, only 5% had found permanent jobs - employment which lasted over 6 months (Calvi 2003, 13). If these basic statistics are accepted, the question of whether NDDP met government aspirations must be answered negatively.
In two years of operations SMO did not publish figures relating to how many disabled clients had found paid employment through their contracted obligations. However, as we have seen, informal discussions with one contract manager led to an admission that only two had found full-time paid open employment. Nevertheless, a comparison based on statistical outcomes would be rather misleading and arguably it was too early to evaluate the outcomes achieved by SMO. For example, my term as Treasurer at SMO took place during the organisation’s second year of operations so any results from the guidance training programme, which was one component in the overall employment strategy, had not filtered through.
However, the question raised in this chapter was not how successful individual organisations werebut rather if an organisation operating to the social model of disability was more successful in engaging disabled people in work. The data suggests that the social model did not deliver any better outcomes for disabled people than a socio-medical model.
Chapter 7
Staff Recruitment and Training
The preceding chapter examined the underlying models of disability that informed how NDDP and SMO operated in relation to assisting disabled people to achieve social inclusion through paid work. It was suggested that in both organizations the dominant model in practice can be seen as a socio-medical one. It will also be recalled that 25-30% of employees in both organizations were disabled. The first part of this chapter considers how each organization was able to achieve such above average representation of disabled employees and will examine the understandings of disability that underpinned each organisation’s own recruitment practices and their approach to equal opportunities.
The implications of this for the organisations’ training and development strategies will be considered because (using Gramsci’s formulation of hegemony) it could be argued that if the social model is to become hegemonic then organisations need to persuade employees of the value of the model and how to apply it in practice. In an organisational context this might be achieved via training programmes and the application of the social model in recruitment practices. Thus it could be argued that the difficulties the organisations experienced in achieving organisational missions was not just a result of the issues discussed in the previous chapter but may also have been a result of poor performance management. Similarly it could be argued that the socio-medical model is still dominant in practice because management has failed to persuade the employees that the social model is more appropriate than a medical or socio-medical model. Such a failure could be redressed through disability awareness training. Therefore, job-related training and disability awareness training will also be discussed.
Recruitment practices in NDDP
The majority of staff in NDDP had been seconded from other organisations so that at the end of the pilot the organisation would not find itself in a situation of having to declare staff redundant. Such a situation would have been politically embarrassing for the Government given that the organisation was set up in order to find employment for disabled people. However, seconding staff from other organisations did not provide sufficient disabled employees to enable NDDP to demonstrate in its own practices that disabled people could be employed. In other words, politically NDDP needed to demonstrate the good practice it was attempting to persuade other employers to adopt. It was important to demonstrate such political rationality whilst at the same time conforming to the technical rationality required to meet Government targets.
Disabled employees in NDDP had previously been clients. Discussing recruitment practices within NDDP, Mark, who as the Manager in NDDP was involved in all recruitment, reported:
All I’m concerned with is if they can do the job or not. If we need to make some adjustments, say more space or special seating or in your case we needed to supply special computers, then we’ll do it. But if what you are asking is, would we employ someone who couldn’t do the job, then it’s got to be no. Most disabled people who come here are capable of work, but if a person, say with severe learning disabilities […] then perhaps working in a place like this isn’t the answer. (Mark, Manager NDDP)
Clearly Mark considers the nature of the impairment in recruiting employees and people with particular forms of impairments. So those for whom relatively straightforward adjustments can be made are more likely to be successful in gaining employment than others. This would suggest a socio-medical approach in which the effects of the impairment can be offset by making adaptations to the environment or to how the work will be done. If Mark had been using a social model then he might have considered how the job might be redesigned so that it did not present any barriers to the individual. However, Mark’s primary concern is whether the individual “can do the job or not”. In other words, the job will not be changed; the question is whether the individual has the necessary human capital to be able to perform the work. The way in which this is evaluated is generally on the basis of the human capital in the form of qualifications, skills and prior experience. In terms of an equality approach this would support a liberal rather than radical approach to equal opportunities and a technical rationality. Mark’s approach to recruitment can therefore be seen as representative of common sense traditional formulations of both the nature of disability and approaches to achieving equality.
From a social model perspective, Mark could be accused of individualising disability because he assesses whether particular forms of impairment can be easily assimilated within existing structures. His liberal approach could be seen as another barrier to the employment of disabled people which (from a radical perspective) would suggest that disabled people are less likely to be able to acquire the same human capital as non-disabled people and therefore it should not be used as criteria for recruitment. Such a critique underpinned the recruitment practices adopted in SMO.
Recruitment practices in SMO
The majority of SMO’s staff was, like that at NDDP, non-disabled. At the recruitment stage these employees were required to have the necessary human capital such as qualifications and relevant work experience in order to be appointed. At the same time, the rationale for setting up SMO was that an organisation could operate according to the principles of the social model in fulfilling its mission to find employment for disabled people. SMO adopted a radical approach to equal opportunities which laid less emphasis on formal qualifications than the liberal model (Jewson & Mason 1986) and needed to demonstrate that its employment practices were successful. In practice, this often entailed providing employment for unqualified disabled people with no prior work experience. Non-disabled people, however, did need to demonstrate they had the appropriate human capital to secure a job. Members of staff were acutely aware of these two different methods of recruitment and that the ability to apply a rational approach to equal opportunities proved to be problematic in practice.
It was regularly pointed out that despite the organisation wishing to adopt a radical approach to equal opportunities and increase the employment of disabled people, irrespective of whether they had the necessary human capital, this was not in practice a realistic option:
I know that’s what we say, but it’s not on is it? All the top jobs here are decided on ability and experience. You can’t seriously say a finance manager can be unqualified can you? (Andrea, Manager SMO)
Whilst the managers who performed specialist functions within the organisation were all qualified and experienced, the CEO (who had an MA in Disability Studies) had no management qualifications or experience of running an organization. Her MA may have provided her with the necessary human capital to try and ensure that SMO operated according to the social model of disability but, as the ensuing discussion on training will show, it did not provide her with the necessary human capital to enable her to improve the business performance of the organisation.
When Andrea was asked why the organisation employed disabled people without the necessary qualifications and experience she replied:
It’s to keep the disability lot quiet. What we say and do are two very different things. (Andrea, Manager SMO)
The need to appear to be operating according to the social model was reported by others. For example, in pointing out that not all disabled employees in SMO were unqualified and inexperienced, Claire suggested:
It’s part of the game they play, if you check, some of them have degrees, and they all have lots of experience. But they need a few token gestures to show how good the social model is. (Clare, Trainer)
The people with ‘degrees and lots of experience’ were (perhaps unsurprisingly) senior managers in the organization who sat on the Board. The experience to which Clare referred was previous experience of working with disabled people rather than experience of running an organisation. The ‘token gestures’ Clare referred to were the unqualified disabled employees: some of the trainers and some of the receptionists and administrative assistants. Andrea claimed that they served to support the perception that the social model and radical approach to equal opportunities could be implemented in practice. The notion that theory and practice did not always match in relation to recruitment was also raised by Tim:
When they want someone it all goes out of the window, they just appoint someone they know can do it. So this targeting stuff is just a farce, everyone knows that but you can’t say it. (Tim, Supervisor SMO)
Clearly the need to demonstrate that the requirement for qualifications and experience discriminates against the employment of disabled people because they have fewer opportunities to acquire either, can, on occasion, be overridden. If the choice is between a non-disabled person with the necessary skills and experience and a disabled person with no skills and experience then the likely outcome is that the former rather than the latter will be employed. If both disabled and non-disabled applicants had the same human capital then under a social model and a radical equality approach, the disabled candidate would be privileged in order to increase the proportion of disabled people.
In SMO, then, two different recruitment strategies were operating. One was based on a liberal approach which was predominantly applied to non-disabled people and the other was a radical approach which was applied only to disabled people. The contradictory nature of this was recognized by employees and served to ensure that neither a social model nor a radical approach to equal opportunities was accepted as common sense by the majority of employees. In contrast, in NDDP a socio-medical model of disability and a liberal approach to equal opportunities was applied to disabled and non-disabled alike and this was accepted as common sense by employees.
The following section will consider how training was conducted in each organization and how the two systems of recruitment in SMO had an on the approach to training and the services provided to their disabled clients.
Job related training in NDDP
In NDDP, the identification of training needs was based on collective decisions about how working practices could be improved. For example, a decision might be made on what kind of information was to be collected and an evaluation made on the adequacy of existing systems. If it was decided that there was a need for a different system someone would be identified to undertake training. That person would generally be someone whose job already included information processing. The long-term aim would be that everyone would adopt the same system for processing information and that the person who had been trained would act as an informal resource for people who were using the new system should they need any help. An example of this occurred whilst the research was being conducted.
Linda was one of NDDP’s former clients and her job was to collect statistical information. The organisation had decided to implement a new information system and she had recently completed an IT training programme. Explaining the approach to training within NDDP, she reported:
I’ve been on a few short courses [...] I’ve learnt computer training, working different computer packages, so I am putting back that training because other people working with me don’t understand what I’m doing until I tell them. It works vice versa as well; when they go on a course they tell me what it was all about. Everybody has different strengths and weaknesses; we try and put our strengths across to everybody else, in the hope that training courses benefit everybody. (Linda, Clerical assistant NDDP)
As everyone had a basic level of expertise in IT, the further skills developed by someone who had attended a training course could be acquired relatively easily by those who had not attended further training. There was therefore an expectation that the skills acquired via training courses would become an organisational resource and could be drawn on by others when required. The skills and knowledge acquired was expected to be transferred between staff members (Blackburn & Rosen 1993; Fiol 1991).
The identification of training needs was not conducted at an individual level and did not include whether or not the individual identified to attend a training course had a disability because at the recruitment stage all employees were presumed to have the necessary human capital to be able to perform their work to an adequate standard. Training requirements were strategically planned and were aimed at allowing the efficient and effective performance of organisational tasks. This is a technical rational approach to training and disability played no part in the identification of training either for individual staff or for organisational performance.
Job-related training in SMO
The identification of work-related training in SMO while similar in some respects to that at NDDP also demonstrated some significant differences. As at NDDP, individuals would be identified to undertake a training course because their work already entailed some aspect of the task for which the training was designed. However most of the job related training at SMO was undertaken by non-disabled employees. Whilst these individuals would be expected to share their newly acquired expertise with others in the organization this proved more difficult than at NDDP because (as discussed earlier in relation to the Board) the existing knowledge base amongst other members of staff was generally very low and there was no expectation that everyone would be expected to change the way work was performed.
Alison, who had been sent on a course to help the organisation improve its project planning procedures reported her experiences:
They sent me on a course to do Microsoft project for the work retention scheme. It’s very useful in project planning, there’s lots of things going on in the background. (Alison, Contracts Manager SMO)
Alison then used her new skills to project manage the work retention contract and prepared a presentation for the CEO:
So I presented the project to the CEO and she didn’t understand it ... So, because she couldn’t do it that way, I had to go away and do it (plan the contract) in a way she could understand. (Alison, Contracts Manager SMO)
It would appear that despite Alison having been trained in more appropriate project planning techniques as the CEO could not understand the new techniques project planning methods reverted back to the systems that were already in place. Whilst Alison may have benefitted personally from the training course, her skills were not used as a resource by the rest of the organisation to improve its performance. In these circumstances one might question the value of sending employees on training courses. However, if the form of rationality that underpinned operations at SMO is considered the logic of their approach to training is apparent.
The dominant rationality at SMO was a political one which was concerned with securing the control of financial resources. One strategy to achieve this was to reassure funding agents that professional management systems were in place which demonstrated financial transparency and accountability. Hence the organisation could achieve legitimacy with funding agents if it appeared to be a technically rational organisation where controls monitored the transfer of resources from inputs to outputs as would be demonstrated via project management techniques. However, despite the need for such external legitimacy, the majority of SMO-delivered contracts, including the ‘work retention scheme’ cited above, were based on an institutional rationality, where, in practice, no monitoring from the external funding agents took place. Hence there was no motivation to ensure that sophisticated software packages were adopted for the internal systems. Such packages would be used largely for presentations to external stakeholders. The institutional rationality which underpinned the ELA contracts also had an impact on a further problem with job related training in SMO that was closely related to SMO’s recruitment strategies discussed earlier.
Carol was a training supervisor and did not define herself as disabled. Whilst she did not disagree with the use of a radical approach to recruitment, she was particularly concerned about the way SMO supported these disabled employees:
If you’re saying people need no qualifications or experience in the area of training and you interview them and feel they’ve got the skills to be a trainer, that’s fine as long as they’re not just chucked in and you expect them to get on with training, which is what happens here. (Carol, Training Supervisor SMO)
From this account it would appear that unqualified disabled people were employed as trainers in SMO but were not then provided with any training to perform their job. Clearly if unqualified people were recruited to training positions the amount and level of training they would require would be significantly more than those who were initially employed as qualified trainers. The quality of the training such unqualified people were able to provide then had an impact on their ability to prepare clients for the labour market and therefore could undermine the organisation’s mission. Clearly, such a paradox needs to be reconciled.
In the last chapter it was noted that the majority of SMO’s clients had learning impairments and it was suggested by their training supervisor that many simply attended SMO for the social life they found on site. ELA, the funding agent, applied no contract monitoring systems to demonstrate that clients had gained qualifications. If no criteria are set and no outcomes demanded, then the training of this group of clients could legitimately be to whatever standard the trainer was capable of delivering. It can be seen that if client expectations had been different; if the type of training that was required had been different; if clients had different forms of impairments, or if funding agents had requested some evidence of outcomes, the employment of unqualified inexperienced trainers would have been difficult to justify. For example, it is highly unlikely that an unqualified, inexperienced person could deliver computer training to people with physical or sensory impairments.
SMO appeared to be trapped in a paradox. Whilst it justified its claim to be operating to the principles of the social model and a radical approach to equal opportunities by offering employment as trainers to unqualified disabled people without regard to their impairment, this was only possible because of the nature of their client’s impairment. In this sense, SMO actively exploited the consequences of impairment and the fact that the funding agents did not set any standards or targets for the training of learning impaired clients in order to support a model of disability which, for political ends, refuses to acknowledge the consequences of specific forms of impairment.
In contrast, NDDP did not try to implement a social model of disability which would have entailed a radical approach to recruitment. They did have targets they were required to meet and these were regularly monitored. At least some of their staff were motivated to meet such targets because this was used as an individual performance indicator in their appraisals and was linked to bonus payments. Employees were recruited with the necessary qualifications and experience that could be developed through further training which enabled all members of the organization to improve performance. Their clients were drawn from a much wider range of impairments and, politically, they could not afford to recruit employees who did not have the necessary skills to perform their tasks to an acceptable standard.
Whilst the survival of both organisations was dependent on the continued financial support of funding agencies, the context and expectations of funding agencies, clients and other stakeholders enabled them to adopt different strategies for demonstrating that the funds were delivering the socially desirable outcomes that had been promised (Euske & Euske 1991; Meyer & Rowan 1977). The differences in approach to job related training in the two organisations were also mirrored in their approach to disability awareness training.
NDDP: staff disability awareness training
At NDDP, compulsory disability awareness training was provided whenever possible during five consecutive weeks of compulsory residential courses away from the pilot office, where staff mixed with employees from other NDDP pilots. However, if the five-week block proved impractical for individuals then it could be split. For example, during an interview for a job at NDDP, the manager raised the issue of training with me. As a single parent, five continuous weeks away would have been problematic and the manager helped to resolve the issue by suggesting that in such cases training sessions could be split into more convenient blocks to suit individual circumstances.
Training was delivered by a variety of organisations all of whom were directly involved in disability issues. Mary was a personal advisor and, after completing the disability awareness training course, she complained about the length of time she had been required to spend away from home. Commenting on the course’s content, she suggested that it had raised several issues she had not considered in detail before. The range of topics covered included benefit entitlement and social security rules as well as the way disability was understood and defined:
We spent some time on the use of correct language, but I think that’s difficult for many of them. Because, people come here and you can use ‘impairment’, but they’ll (clients) say, ‘handicap’. They did provide a list of words and their use, you know, don’t use things like handicap and spastic and those sort of words. There were some good speakers, we had people from the RNIB, RNID, and they were very good, and we had a community psychiatric nurse [...] We had an exercise involving two GPs, where a client would go in and say I’m depressed or whatever and he’d say here are some pills now go away, then the other GP would say right, there’s a programme on at the gym and so on and they’d try and get the person to look at the problems rather than trying to cure everything through medication. (Mary, PA NDDP)
The emphasis on correct language could be seen as an attempt to change the common sense understanding of clients by questioning the use of terms now widely considered to be politically incorrect, such as ‘handicap’. In Mary’s description, two understandings of disability can be discerned: a medical interventionist one, where tablets were viewed as a ‘cure’ for impairment, and an alternative view of disability based on social remedies which had no direct medical intervention. Certainly, it cannot be said that NDDP staff were encouraged merely to see the impaired body as the sole site of disability; rather the training seemed to address both medically based impairment and social factors.
Given the nature of the disability awareness training employees attended at NDDP, it might be expected that this would have had an impact on their understanding of disability. Most NDDP employees felt that disability applied only to people with impairments that limit performance but that, even when these existed, it did not necessarily mean someone was disabled:
My own father was born with only one arm, I’d never class him as disabled, and he used to make toys for me when I was little, little dolls houses and things. I never thought of my dad as disabled. He decorated, climbed ladders and used to say he can do anything that any other man with two can do. It’s true. So what is disabled? It stops him doing certain things say holding a loaf of bread the way we hold a loaf of bread but he adapts differently. (Elaine, PA NDDP)
In this quotation, Elaine seems to be attempting to break the connection between impairment and disability. She does not accept that having an impairment automatically qualifies someone as disabled. This, of course, supports a social model of disability. Nevertheless, most people at NDDP argued that both impairment and social factors together contributed to people feeling disabled. For example, Wendy argued:
People who come here have some sort of medical condition or other, but they want to work. It’s up to us and them to find ways of making that happen [...] It’s not about any medical things, it’s about making changes to work like special computers, or retraining, or employers just giving someone a break. (Wendy, PA NDDP)
Wendy was not unusual, the majority of staff at NDDP articulated a socio-medical understanding of disability and this might be expected given the nature of the training they had attended. For NDDP employees then the socio-medical model was common sense.
SMO: staff disability awareness training
SMO’s disability awareness training was also compulsory for all staff. However it was delivered in-house either by or under the supervision of the CEO. The training sessions ran once every six weeks and lasted, on average, for three hours. One particular training session will be used as an example of disability awareness training in SMO because it was the one that most respondents referred to in order to express their views about the quality of the training.
The background to this particular session involved a paper written by the disabled academic, Tom Shakespeare, in which he had suggested that, in certain cases, the use of pre-natal genetic engineering should be considered where premature death and pain would otherwise be expected for the child (Shakespeare 1997c). The article was given to all staff to review. The training session consisted of staff being divided into groups of seven people and each group was given a proposition that argued against the use of genetic engineering. Clare explained what had happened:
It was about trying to make the staff say genetic engineering was wrong, it wasn’t about discussing it. I personally believe if you’re carrying a child and it’s got an impairment they can cure while it’s in the womb, so that when the baby’s born it will be healthy, what mother wouldn’t say, right go for it, do it? But they say no, you shouldn’t do it because that person is an individual it’s entitled to be born as nature intended regardless of any problems it might have through life. I think that’s wrong, but they’re saying no that’s not wrong that’s right ... they will accept wheelchairs for people who can’t walk, but won’t accept people should be helped to walk. It’s a question of what suits me. I mean we all got separate questions, on our table we had to support the question that abortion or termination should never happen under any circumstances. It was a table full of women, not one of us agreed with it, but we had to support it. It was very difficult, because nobody thought it was true. What we had to say in the end was, before we tell you why this statement might be true, I just want to say that nobody found it true and that included a disabled person on our table. But you couldn’t argue why, you were only allowed to say why it was true. (Clare, Supervisor SMO)
SMO adopted a particularly extreme, radical view on genetic engineering and abortion. However, some disabled academics have offered qualified support for genetic engineering (Shakespeare, 1997c) with others upholding a woman’s right to choose whether to abort or not on qualified medical grounds (Finkelstein and Stewart 1996, 177). This option was not offered in the training session on which Clare reported.
Disability awareness training sessions in SMO can be seen as attempts to enforce a particular version of the social model. Many employees felt that the arguments advanced by the CEO were contradictory. In the extract above, Clare articulated one of these contradictions by questioning why the use of a wheelchair to reduce the effect of a physical impairment was acceptable when medical interventions that might reduce or prevent an impairment are not. However, the issue which caused most anger amongst staff was the silencing of any real debate by being required to speak only in support of the given propositions. This authoritarian approach appears to have been counter-productive because, as the following extracts demonstrate, some staff resisted disability awareness training altogether:
I try and make sure I’m out on business when they (training sessions) come up. I’ve nothing against training, it’s good to be shown different ways of thinking about disability, but this is more like indoctrination, you can’t disagree. (Ken, Supervisor, SMO)
Those that were unable to absent themselves on business grounds adopted a different approach:
I don’t pay attention to them anymore, I just say what they want to hear, and it’s easier than trying to argue. (Michelle, Administration Supervisor SMO)
In explaining the need for disability awareness training the CEO argued:
It’s very important to train people in what our principles are and how we hope to achieve them. You know, we’ve had people who have had no idea at all about disability issues, some of them have been quick learners I have to say. (Sharon, CEO SMO)
What the CEO did not recognize was that the ‘quick learners’ she refers to may have been merely paying lip-service to her views. No member of staff interviewed found these training sessions helpful or relevant to their work in SMO. Whilst the CEO attempted to reinforce the political ‘good sense’ of supporting the social model by providing disability awareness training for staff, her unwillingness to allow any debate ensured that such understandings did not become hegemonic. As Gramsci (1971) argues, hegemony can only occur with the consent of those over whom power is exercised. Therefore, in exercising her power to deny any debate the CEO has unsurprisingly created resistance – a phenomenon which has been recognized in other contexts (see Austrin 1994; Bain & Taylor 2000; Callon 1986; Clegg 1989, 1994; Knights and McCabe 1999; Knights & Vurdubakis 1994; Rothschild & Miethe 1994; Taylor & Bain 1999).
Given the nature of the training that SMO employees had undertaken, it might also be expected that they would all define disability in social model terms of environmental barriers. However, informal conversations with employees showed that their understandings were not significantly different to those of NDDP employees:
I went to a conference on independent living and I took a lot of stick for being there because they said I was not disabled. How they knew that I don’t know, because I have epilepsy - a hidden disability - and I could have used that if I wanted. (Clair, Trainer SMO)
Despite having an impairment Clair did not classify herself as disabled, even when she felt under pressure to declare her impairment. This mirrors the comment from Elaine at NDDP who did not perceive her father to be disabled. Consequently, Clair could also be seen to be supporting a social model by breaking the link between impairment and disability. Others, however, did suggest that there was a link:
I know this doesn’t go down well in here, but for me impairment does matter. Look at you, we can do what we can, but at the end of the day we can’t make everything the same for you, it’s just not possible. (Tim, Supervisor SMO)
If you’re in a wheelchair, it’s pretty easy to understand barriers. But what about most of our trainees, they’ll never work, so how do you find barriers to explain that? I just can’t accept that everything is the fault of those outside, you know, employers and the like, I meet some of them regularly and I think many are genuine when they say they want to help, but how do you overcome it when they can’t concentrate for more than a few seconds? (Andrea, Manager SMO)
Both Tim and Andrea recognized the importance of impairment and social factors which disable people. The nature of the impairment also affects the degree to which barriers can be removed. In some cases it is not possible to remove all barriers and remove the effect of an impairment. It would appear, therefore, that despite attempts to ensure that employees in SMO were trained to recognize the social nature of disability, the majority still articulated a socio-medical understanding.
Summary
If organisational rhetoric is considered then a stark contrast is presented between the recruitment and training offered by both organisations. It has been argued in previous chapters that, historically, the traditional intellectual understandings of disability can be represented as predicated on both social barriers and a medical determination of impairment. NDDP reflected this position in their recruitment and training policies. Impairment was used principally to determine group membership and for this group, providing impairment did not restrict their ability to perform prescribed work roles, alterations to social barriers were undertaken to facilitate their employment. This reinforces the historical continuity in understandings expressed by Beveridge (1906), 'work for those who can, support for those who can't'. Both technical training and disability awareness training reinforced this traditional intellectual understanding. On the other hand, the attempts at SMO to widen a social model ideology into everyday operations which could be accepted by stakeholders as common sense did not succeed.
Despite claiming to adopt positive discrimination policies SMO employed approximately the same percentage of disabled people as NDDP. For technical posts including finance and operations management, the criteria for recruitment shifted away from radical positive discrimination to liberal approaches based on the proven ability and experience of non-disabled people. This elite of educated and experienced members of the organisation could then gain similar technical training to that provided by NDDP although this did not in many cases transfer to a shared organisational resource but became an organisational tool to confirm technical accountability to external stakeholders. A significant difficulty SMO had was that members of staff were aware of the contradictions and inconsistency in social model ideology which could not be overcome through authoritarian disability awareness training. One such inconsistency was shown when a person without a visible impairment was subjected to disabling attitudes by other disabled people with obvious impairments which visually confirmed a disabled status.
In Chapter 3 the difficulties of conducting research were discussed when traditional intellectual understandings privilege sight as a 'real' and objective truth. This problem of sensory elevation has been recognised in disability studies (Hughes 1999) and it can lead to the disappearance of impaired bodies (Hughes & Paterson 1997; Paterson & Hughes 1999). This research identifies that this phenomenon is also employed by disabled people who possess identifiable impairments and hence elevate themselves to hierarchical, ocular-centric superiority. The problem SMO had was that such contradictions and inconsistencies were obvious to members of staff who were then instructed to believe that all disability was created only by a hostile, oppressive, disabling external world. While inside the organization, the majority of SMO employees paid lip- service to social model adherence but informally applied traditional intellectual understandings mirroring those found in NDDP. SMO’s awareness training sessions never achieved Gramsci's criterion of changing traditional intellectual understandings and hence did not become uncritically accepted as common sense and thus hegemonic. The following chapter continues the search for models of disability in the two organisations by considering the question of how they define and overcome issues of access for disabled people.
Chapter 8
Overcoming Access Barriers
The preceding chapters have considered the achievement of organisational missions both in relation to the clients of NDDP and SMO and the internal practices of recruitment and selection in order to evaluate the underlying models of disability and approaches to equality adopted by each organisation. There is one more aspect of understanding disability and the exclusion of disabled people from society and employment which needs to be considered: the issue of access.
As has been discussed, the social model of disability maintains that disability is a product of the built environment and social attitudes (Campbell & Oliver 1996; Finkelstein & French 1993; Gleeson 1999; Imrie 1996; Oliver 1996; Skelton & Valentine 1999; Zarb 1996, 1997) as a result of which disabled people are excluded from mainstream society and have fewer opportunities than non-disabled people. Access therefore plays a major part in the social model of disability. Access may be related to physical access such as where buildings have been constructed on the basis of the needs of non-impaired bodies. It may be related to communication systems where the method of communication assumes a non-disabled body or it may also relate to society’s attitudes towards disabled people which may result in fewer opportunities for disabled people to gain paid work.
By casting the problems disabled people experience as a result of access problems the focus for the ‘remedies’ is shifted from the individual impaired body to the collective and social environment. Indeed, Mark’s argument that it would be difficult to employ people with learning impairments within the organisation (see Chapter 7, p. 225-6) could be seen as evidence that access to employment was being denied to this group of disabled people on the basis of their impairment. However, as SMO professed adherence to a social model it might be expected that access barriers would be removed without any consideration of impairment or type of impairment. The application of a social model should result in an environment and methods of communication which disable nobody. This chapter considers whether this was actually the case in practice.
It would be unreasonable to expect that two organisations could change society’s attitudes towards disabled people so the issue of access will only be considered in terms of whether the employees within the organisations altered their views of the causes of disability. The focus of the discussion will be on how each organisation dealt with issues of physical access and communication. Information will be drawn from interviews with employees of NDDP and SMO and the experiences of clients as well as my own experiences of both organisations.
NDDP: defining and enabling access
Staff at NDDP were aware of the many dimensions of access:
I think access is usually thought about as wheelchairs, but there’s more to it, what about you? Your access is different to that I’d guess. If you had any access problems I’d ask you what they were and see if we can find a way around them. (Paul, PA NDDP)
Access is a tricky one, most of my clients are learning impaired or with mental health issues, so for me the question is first how do they get access to the scheme and then access to making their own choices? It’s very difficult. (Elaine, PA NDDP)
Both Paul and Elaine acknowledged that the ways in which access problems manifest themselves are dependent on the nature of the impairment an individual may have. Concerns about access to the premises and to information had been central to the setting up of NDDP and to their ongoing work.
Mark had worked as a senior manager in the employment service for several years and when NDDP was being set up he was very aware of the importance of access to the premises and to information as he had the responsibility for making the final decision about which building would be chosen. Issues of physical access were always a major consideration and as part of the process of finding suitable premises, landlords were required to provide details of both location and accessibility. Before a final agreement to lease the premises had been reached, Mark ensured that a disability access audit was conducted by members of the employment service disability team. Whilst this team did not include any disabled people and could therefore be criticized from a social model perspective on the grounds that non-disabled people were determining the needs of disabled people, in fact, the views of disabled people were sought and acted upon. Mark reported that as part of the audit, wheelchair users had advised him on building access. This was just one of several criteria Mark used to determine suitable accommodation and address access issues.
The first criterion was physical accessibility. Mark needed to ensure that NDDP was located in premises with wheelchair access both from the immediate external vicinity and within the organisation. This is perhaps not surprising given that the wheelchair has become a generic symbol for disabled people and that they have led many highly visible campaigns to ensure that public buildings and transport systems (both physically and financially) are accessible to mobility impaired people and disabled people generally.
The building that was selected had an underground car park with designated disabled parking areas and lifts which could accommodate a wheelchair. The building was located in the busy town centre and the main pedestrian entrance was on street level within a car- free shopping area. The site also had good public transport links with bus and train connections within a short walk as Angela pointed out, ‘there are no problems getting in, the bus is just over the road’ (Angela, Client). For disabled people within ELA, public transport was free hence transport costs were not a disabling barrier. As visually impaired, I found moving around within the building unproblematic. One of the major problems for visually impaired people is doors especially when they open in different directions. The only doors encountered were those at the office entrance. Once inside the building, the arrangement of tables and filing cabinets created walkways which could be touched on both sides and provided a physical guide and route around the open-plan office area. The latter was particularly beneficial because as I began to recognise individuals’ voices, these acted as ‘positioning markers’. Physical access to the building for mobility impaired people and for people with visual impairments had been carefully considered and any potential barriers had been removed.
However, promoting disabled access as predominantly a product of the built environment can marginalize those where access is not related to inaccessible buildings or transport systems. For example, many visually and learning impaired people may consider the disabling aspect of access to be how to find a building especially if it is in an unfamiliar location. In these cases, it becomes difficult to disengage the individual consequences of impairment from their disabling effects. Nevertheless NDDP had considered access for different people with different impairments. For people with sensory impairments, two options were available: NDDP staff would either meet a client wherever they chose – for example in their home or in a familiar location such as their local job centre, or a client could be met by a member of staff in a nearby public place such as the train station or local bus stop and escorted to NDDP’s offices. These options inevitably individualised disability in the sense that they accepted that impairment does in some circumstances involve consequences that cannot be overcome by changing the environment and are therefore a response to the impairment itself. Disabling barriers, whether socially created or as a consequence of an impairment, were acknowledged and steps taken to ensure these did not restrict access.
On the advice of representatives of impairment specific groups a similar approach was taken towards access to different forms of communication and methods of providing information to clients. Information was provided in a variety of formats such as Braille or large print for visually impaired people and the provision of signers for deaf clients during face-to-face interactions:
I thought I’d have a problem being deaf, but they came with me to see my boss with Alan the signer, and it was sorted. (Simon, Client communicating through a signer NDDP)
Clients who had learning impairments were equally satisfied with the service:
it's [NDDP] very accessible, I had no trouble getting here and the staff are good too, they explain what it’s about and tell you in simple words what’s going on here. (Dave, Client, NDDP)
Thus in terms of physical access for mobility impaired clients and communication access for clients who had sensory or learning impairments, NDDP appeared to have removed many barriers. They did this via consultation with representatives of groups of disabled people who had particular forms of impairment and through direct consultation with individual clients. In each case they were responding to their clients’ particular needs and ensuring that neither the physical environment nor communication systems which were based on non-impaired bodies acted as barriers to the ability of disabled people to access their services. This was extended to the research for this thesis so that when interviewing deaf clients, signers were provided. As such NDDP was following a socio-medical model.
SMO: defining and enabling access
As SMO claims to follow the social model of disability, it might be expected that an environment would be found in which barriers to physical access or communication systems had been removed in order to facilitate access. SMO’s premises were provided by the ELA. The building was formerly a single storey primary school and stood in its own fenced and secured grounds in a suburb outside the city centre. In consultation with both the CEO and Chair of SMO – both wheelchair and car users - the ELA had made a number of adaptations to the building in order to remove potential barriers.
For disabled drivers, car parking bays had been widened and designated with a logo close to the main entrance which had been made accessible by ‘dropping’ the pavement kerbs and installing electrically operated entrance doors. Doors had been widened and ramps had replaced steps. In addition to the primary security offered by the fenced and gated perimeter, electrically powered steel roller shutters protected all external windows and doors and the reasons for this will be discussed in due course. In order to remove potential problems of access to the building, SMO used their own two mini-buses to transport their clients to and from home. Both the CEO and Chair of SMO asserted that the premises were therefore ‘a model of accessible building design’. Whilst such an assessment may have been correct for wheelchair users, given my own impairment I would find it difficult to endorse such a claim.
The wide, long, featureless corridors, punctuated with doors leading to staff offices and numerous dividing fire doors were difficult to navigate. In order to overcome this access barrier I had to have a sighted guide to assist me to find rooms and individuals at SMO. In this example a relatively unproblematic compromise was available, however it did not provide me with the ability to move around the building independently. When access is considered in relation to the external environment compromise became more difficult to achieve and was not singularly related to disabled people.
For disabled and non-disabled car users, the location and parking facilities at SMO enabled full independent access. However, for those who relied on public transport independent access was more problematic. There were neither train stations nor bus stops within the immediate vicinity. The lack of public transport close to the premises was rendered even more problematic because SMO was located in a suburb with a high level of crime. During my period as treasurer access to the premises had been reduced on two occasions by the police, once in order to investigate a stabbing outside the premises and the second time in relation to a drive-by shooting. The area was notorious for drug trafficking, and I was warned several times to follow the implicit rule adopted by many staff of not venturing outside the grounds unaccompanied.
To ‘remedy’ this access issue, it was agreed that the cost of all journeys to and from SMO would be undertaken by taxi and the costs classed as legitimate travelling expenses in my role as Treasurer. Whilst this resolved some of the problems I had accessing the premises other visually impaired staff who were not Board members were less fortunate and had to fund their own travelling expenses. During the period I was Treasurer, no claims for travel expenses for office based staff were seen. For staff unable to drive because of their impairment, the financial barrier to accessing their work premises was not removed by SMO. The reason given for why travelling expenses were not provided for other staff requiring taxis was that this would prove too expensive. In other words, a technical rational argument was used. Such an argument was not necessary in relation to the CEO and Chair because, as wheelchair users, they received financial assistance to purchase adapted vehicles through the Government’s ‘motorbility’ scheme (Bury 1996; George 1999) and therefore access was relatively unproblematic.
However, there was one other problem with gaining physical access to the building which applied equally to disabled and non-disabled people. As indicated above, the building was located in a high crime area. On a number of occasions when leaving the building at night it was clear that taxi drivers were reluctant to enter the area. Hence on several occasions, leaving the premises after dark became difficult because taxi drivers chose not to enter the suburb. This, of course, is an example of how, from a social model perspective, disability is firmly rooted in the local environment. Such a formulation would need to take no account of impairment because the environment was equally disabling to impaired and non-impaired people who did not have access to their own forms of transport. Ironically this would suggest that such groups were more disabled by the environment and their lack of private transport than those who have an impairment and private transport. It can be seen that, logically, such an argument would have to be accepted within the framework of the social model which attempts to break the link between impairment and disability.
Although the immediate environment in which the building was situated was problematic there was little SMO could do to alter the situation because the siting of SMO in this location was not subject to negotiation with ELA. The building was the only one available and to have turned it down as unsuitable might have jeopardized the creation of SMO. Moreover, given that the premises were provided and adapted by ELA, financially this was an attractive offer and it would have defied political rationality to reject it. This decision to accept the premises was made by a wheelchair using senior management who did not use public transport and hence did not face its disabling problems. The acceptance of this site by these organic intellectuals can be seen as a contradiction between a good sense and common sense.
Good sense, as embedded within the social model, would suggest that the building should not present any barriers to access. This would have required that SMO was located closer to public transport facilities, in a safer area of the city and that the internal layout of the building enabled everyone to move around independently. A pragmatic, common sense understanding would suggest that the existing premises were the best that could be achieved under the circumstances. The contradictory nature of common sense meant that the problems of access this created could be resolved for some groups of people but not for others. Those that could not drive and did not have their own transport were effectively left to fend for themselves. The issue of compromise is especially evident when considering access to information and communication systems which are even more difficult to resolve.
In an organisation based on the social model it might be expected that staff are trained to use different forms of communication. If, for example, it is acknowledged that speech is a barrier to the inclusion of deaf people then it might be expected that staff should be able to sign. This would mean that the environment of SMO would not be a barrier to communication for a deaf person and so they would not be disabled. This was not however the case for a number of reasons as the following account demonstrates.
There were a variety of impairments represented on SMO’s Board of Directors. Members had mobility impairments, visual impairments, hearing impairments and dyslexia. The dominant forms of communication used to conduct business were verbal (speech and visual); visual (in the form of signers), and presentations using Powerpoint and/or written documents. These forms of communication were effectively compromises based on the different needs of different individuals with particular forms of impairments. In other words, the link between impairment and disability was recognized and acted on. However this by no means eradicated problems of accessing information or communication.
Communication barriers were present at Board level and could have been removed if there had been a will to do so. Two members of the Board were deaf and communicated through signing via two sign interpreters employed by SMO. The deaf members were thus required to compromise and accept assimilation into the dominant mode of communication – speech - because other board members had not learnt to sign. Signing would have provided an alternative to verbal language, removed the need for signers (and the cost of their services to the organisation) and offered equal access to deaf members thereby providing integration. However, given the variety of different impairments represented on the board such a solution would have disabled blind people.
In order not to exclude blind people from any discussions, deaf/blind signing would have been required. This system involves tactile signing, where individual letters are denoted by touching specific parts of the palm of the person with whom one wishes to communicate. Whilst this method of communication is appropriate when communication occurs between two people, it is less satisfactory when meetings take place with a number of people in attendance. If everyone was to use this method of communication meetings would take much longer to conduct because the method is far more time-consuming than other forms of communication. Given all these potential difficulties and given that I do not use deaf/blind signing this option was not considered. However even if everyone had been prepared to learn this form of communication, if learning impaired people had been members of the Board this may have proved difficult for them to learn. In practice then, the deaf Board members willingly accepted the compromise of using signers and fully participated in meetings. Fully participating in meetings however, proved more difficult for me.
As I am visually impaired and do not use Braille, it was requested that all reports and information be provided in electronic format either in an email or on computer disk. This would have enabled me to use a speech-output computer system to access any information required. On the whole these methods would have provided equality of access. However, for contract monitoring purposes, SMO used a graphical spreadsheet that highlighted contractual variances through coloured charts. Data produced in such a format rendered this information inaccessible to me, as a speech software system cannot describe graphical representations. It was requested that the same information be produced in plain text format. This request was refused on the basis that the majority of the Board had little business experience and found it easier to understand the data when it was presented graphically. Attempts had previously been made to produce written descriptions of the graphs for everyone. However this proved to be extremely long, cumbersome and very time-consuming to produce and served to confuse rather than clarify the issues for many Board members. As I was the only person affected by the method of communication, a decision was taken, with my agreement, for the graphical system to continue. This was a pragmatic solution: it provided information in formats that disabled the least number of people but it cannot be seen as the application of a social model.
During the twelve months I was the treasurer for SMO, it was necessary to rely on the interpretation of the data provided by others. As the other members of the Board had little business experience these interpretations invariably required rather more careful exploration than any interpretation I might have reached for myself using plain text format. I was therefore left to resolve my problem of communication and accessing data independently. So, within a social model organisation impaired bodies are rendered invisible (Hughes & Paterson 1997; Paterson & Hughes 1999) which accepts a secondary status as a participator as a consequence of the neglected impaired body. In order to achieve a degree of participation it was agreed to make an individual compromise. This entailed arriving for Board meetings at least two hours before they began which allowed a detailed examination of all contracts to be discussed in an accessible format which was via verbal discussions with the finance manager. Rather than upholding a collective social model of disability, SMO effectively constrained me to find a solution to my individual medical impairment. In effect SMO could have been accused of discrimination on the basis of an individual impairment, a point that Andrea recognized in remarking casually one day:
You could bring this place to a stop by insisting you are discriminated against by us using written materials. If you said you are discriminated against in here, you would probably succeed and the place would grind to a stop. (Andrea, Manager SMO)
The desire not to make the organisation ‘grind to a stop’; the compromise in meeting with the finance manager before meetings, and the unwillingness to raise discriminatory practices were effectively self-silencing measures. However, such a compromise was not made by other Board members. When physical access became an issue with other organisations, they took it up vociferously and battles were fought on a political platform.
When SMO had joined the regional Chamber of Commerce it had found the front of the Victorian building inaccessible because entry was via a flight of stairs. A side entrance was, however, accessible with internal lifts available to give wheelchair access to all floors. The Chamber had stated that it would provide assistants to guide or help any disabled person gain access. Additionally, documentation would be made available in any format and signers would be provided at meetings. So, for deaf and visually impaired people, the Chamber of Commerce provided identical or better access facilities than SMO and its city centre location provided public transport access to a less disabling environment.
However, at several SMO Board meetings, the physically impaired members argued strongly that SMO should make a political gesture by resigning publicly on the grounds that the premises were inaccessible. Here the issue became one of equality of access as the mobility impaired members did not wish to accept the compromise of using a side entrance. Not all Board members were persuaded of the arguments put forward by wheelchair users. It was pointed out that the ELA’s Town Hall also had steps at the front with a side entrance for wheelchair access. If SMO was to be consistent then the Local Authority should also be accused of discrimination. However, as ELA funded SMO an attack on them might have proved to be politically and financially fatal.
The issue of physical access ‘simmered’ at Board meetings but was not allowed to ‘boil over’ by those who were not mobility impaired. It was not resolved during my term of office and up to the time of my resignation, SMO had not left nor publicly threatened to leave the Chamber of Commerce. Issues such as these did nothing to help turn the social model into common sense for the staff in SMO. Andrea commented:
They’ve got blinkers on, what’s the word, they’re like fanatics […] it’s not about flying the flag anymore or making compromises, it’s more like it’s all or nothing. (Andrea, Manager SMO)
Compromises were sought when they resolved problems that senior management in SMO faced but were not deemed acceptable when other organisations made them in reducing problems of access.
Staff at SMO were also keen to report a second incident which had occurred. SMO had arranged for a training course for staff to be held in the premises of a local education college. The college had arranged for material to be available in either print, large print, Braille or as audio tapes. One trainee complained to the CEO of SMO of the use of ‘discriminatory language’ by a member of college staff. The extracts below are from interviews with a manager who had been given the task of investigating the incident, and with other members of staff:
One of the staff, I think she’s partially sighted, and she said she wanted print to be in large print. So the trainer said right, I’ll get you this done in big print and she objected very strongly because he said ‘big’ and not ‘large’. So from that the CEO’s sent a memo out to me telling me I must speak to the trainers because they have no idea about disability and disability issues and they are offending disabled people greatly by saying ‘big’ instead of ‘large’. Then for the life of me I think, is that an issue? (Robert, Manager SMO)
When this story was checked with Peter and Carol they confirmed that this incident had happened and remarked:
It’s that sort of thing which makes us look ridiculous. Can anyone tell me why ‘big’ is a discriminatory word? (Peter, Supervisor SMO)
You get used to things like that around here, I felt sorry for Bob, he had to go and tell them (college trainers), but he didn’t believe it. I can’t explain it. (Carol, Supervisor SMO)
Whilst it is fully accepted that language is an important means by which inequality is maintained, the majority of employees in SMO could not support the claim that a trainer had used offensive language and that this was evidence of a lack of disability awareness. By providing the information in a large print format the trainer had acted as effectively as possible to remove any barriers the course presented to visually impaired people.
In Chapter 6 it was argued that the political ethos of SMO relied on organisational control of the information given to employers when determining what might constitute a medical condition about which an employer had a right to know. In the instance of ‘big’ versus ‘large’ print, it is possible to see SMO again attempting to exert control, this time over the use of language. This may however have been an effect of treating disabled as a homogeneous category so that if a word offends one disabled person then it is assumed to be offensive to all. In some cases it may be necessary to challenge offensive language in order to challenge common sense understandings of what is discriminatory. However in order for this to be successful there has to be agreement amongst the larger community. In this case other visually impaired people did not find the concept of ‘big’ in this context offensive. Making a formal complaint on the basis that such behaviour was unacceptable from a social model perspective of disability did little to persuade disabled or non-disabled people that the social model should be widely adopted as common sense.
These accounts highlight a number of issues. Despite the political rationality which underpins SMO, the technical rationality needed in order for it to perform effectively entailed that compromises had to be made in relation to the removal of access barriers. This applied to both physical access and to accessing information and communication systems. However this was not just an effect of conflicts between political and technical rationality it was also a result of the conflicting needs of people with different forms of impairment. In SMO wheelchair users seemed very reluctant to compromise on physical access as it related to their impairment either in SMO’s premises or with external organisations. In part, this was because they assumed that if they had no physical access problems then the building must be fully accessible. When they were made aware that others were experiencing access problems it was left to the individuals experiencing the problems to resolve them. It can be seen that this undermines the notion that access should be a collective social responsibility.
This demonstrates that attempts to remove disabling barriers in SMO were influenced by the type of impairment organisational members were most familiar with. In this case it was physical impairment affecting mobility. A lot of effort was made to remove barriers of access to the site and within the building for wheelchair users in order to integrate people with mobility impairments and enable them to navigate the building independently but such effort was not extended to those with visual impairments. Access to information presented in visual format was not a barrier to integration for physically impaired people or to hearing impaired people but it was a major disabling problem for people with visual impairments. However, a change to the format through which such information was presented which would have accommodated visual impairment could potentially have disabled people who had insufficient business experience.
Therefore, people with visual impairments had to accept the status quo and assimilate into the dominant social practices. Of course, this is in direct conflict with the ideology of the social model of disability. From the perspective of the social model, the presentation of information in formats that disabled people with particular forms of impairment should be addressed if integration rather than assimilation is to be achieved.
Overall it can be seen that SMO was effectively forced to operate to a socio-medical model of disability. It was not possible to remove many of the disabling consequences of impairment and in those cases individuals were enabled to participate by accepting any compromises which could allow assimilation. The acceptance of limitations caused by impairment coupled with the recognition that many barriers are environmentally constructed is consistent with the historically dominant socio-medical model of disability.
Summary
The examination of each organisations’ approach to the removal of access barriers has shown both similarities and differences. In relation to physical access, as NDDP was able to select its site it was possible to locate in an area of the city which did not present any barriers to mobility impaired people. For people with other forms of impairment an individualistic approach which took account of the impairment was provided in the form of meeting people in the place of their choice. Within NDDP’s premises an environment had been created which enabled independent access and mobility. With regard to communication and information, NDDP provided alternative methods of communication in response to the needs of individual clients. Such an approach to access is suggestive of a socio-medical model which acknowledges that different impairments require different solutions and treats each impairment on an equal basis.
Unlike NDDP, SMO had little choice in terms of the site in which it was located. Whilst the location in a dangerous inner city environment did not present any access barriers to wheelchair users who had their own transport or to SMO's clients as they were transported to and from home, it did present access problems for others: both disabled and non-disabled. Similarly, whilst the organisation had adapted its premises to remove access barriers for wheelchair users to enable independent access it failed to extend this to visually impaired people. The removal of access barriers for the latter necessitated that such people be escorted around the premises.
In relation to access to communication and information, whilst SMO (like NDDP) provided different methods for people with different forms of impairment they were unwilling to provide information in a format that would provide independent access to people with visual impairments who had more business skills than the majority. These differences suggest that in SMO not all impairments were treated equally but that a hierarchy of disability had developed which was related to the degree of positional power individuals enjoyed. At the top was an elite group who demanded the removal of barriers and refused to compromise. Below this was a second tier who had accepted some compromises and, finally, a third tier where no degree of compromise could enable them to have independent access. Such a hierarchy of impairment was covert because to have openly acknowledged it would have undermined senior management’s rigid adherence to the social model’s political rationality. Those in positions of power tended to have mobility impairments and the inequitable emphasis on the removal of physical barriers at the expense of barriers to those with different impairments made integration and ‘equal’ participation an elitist privilege. For those with sensory impairments, participation was only possible through compromise, particularly in terms of access to information. As a result, such people had to settle for assimilation rather than full integration. For people with severe learning difficulties, however, neither assimilation nor integration was facilitated and this group was effectively excluded from any participation in organisational decision making. It can be concluded, therefore, that this attempt to put the social model of disability into practice actually created disability for some at the expense of others and thus any claims to be a universally emancipatory model would seem to be questionable. The social model of disability removes the impaired body as the origin and site of disability. However, the evidence presented of practices adopted by SMO shows that those for whom the consequences of impairment had more salience than the built environment were effectively silenced and marginalised.
The attitudes of disabled and non-disabled people alike have an important affect on how individuals experience impairment but it is not possible to support an argument based on any notion that negative attitudes are the exclusive preserve of non-disabled people. If disabled people are to gain greater independence and remove disabling practices which have historically largely marginalised and excluded them from labour markets then an understanding of disability must be produced which better explains the experiences of impairment. In the first instance, such an understanding would need to become good sense to a wide population of impaired people. It can be seen that the Procrustean construction of polar opposite models of ‘disability’ is inadequate and restrictive. The evidence presented in this chapter has shown that the claims made by SMO to be operating a social model of disability that disregards the implications of impairment do not stand up to examination.
Chapter 9
Research Summary and Conclusions
This thesis has attempted to answer three questions in relation to formulations of the nature of disability and the ways in which disabled people can be assisted in gaining greater social inclusion through paid work. Those questions are: whether the social model of disability is new; whether or not the medical and social models of the causes of disability are mutually exclusive, and if a practical application of the social model of disability can facilitate better employment opportunities for disabled people. Using Gramsci’s concepts of hegemony; traditional and organic intellectuals, and good sense and common sense, historical data and contemporary practice in two organisations whose missions were to assist disabled people into employment were examined. It has been considered whether different practices supported different approaches to equality and whether different forms of rationality underpinned practice. Using this framework, this chapter considers what the data suggests would be the answers to each of the research questions.
Is the social model of disability ‘new’?
This question emanated from the argument made by a number of writers on disability who have suggested that historically the medical model of disability (which posits that disability is a direct consequence of an individual impaired body) has been hegemonic (Barnes 1997; Barnes & Mercer 1997; Campbell & Oliver 1996; Oliver 1990; Oliver & Zarb1989). Part of the argument has been that the medical model has become dominant because it was advocated by medical experts and social researchers who used traditional methodologies for researching disability. It was suggested that such experts had neither the experiential knowledge of disability nor had they consulted disabled people in conducting their research (Barnes 1997a, 2003; Barnes & Mercer 1997; Finkelstein 2001; Hunt 1966; Oliver 1992; Stone & Priestley 1996). The formulation of the medical model of disability supposedly informed social policies and legislation which ultimately oppressed disabled people and did not enable their social inclusion on an equal basis with non-disabled people. Although oppressed by the medical model, it was argued that disabled people had historically accepted such an understanding as inevitable.
The application of a Gramscian framework to these arguments would suggest that the medical model constituted the good sense of traditional intellectuals such as the medical profession and non-disabled researchers. The acceptance of this form of good sense by both disabled and non-disabled people would indicate that it became common sense – accepted by a wider community than just the traditional intellectuals. When good sense becomes common sense and guides people’s actions, it is accepted uncritically by the majority of the population even if it serves to maintain social, economic and material relations of inequality between (in this case) disabled and non-disabled people. When this occurs it can be seen to be hegemonic in that even those who are oppressed by such an understanding consent to live their lives according to it.
However a significant aspect of common sense is that it is often internally contradictory and some people will recognize that it supports particular social and economic relations which benefit particular groups more than others. This leads to some groups resisting dominant understandings and developing new forms of understanding which reflect their own material conditions and their social and economic interests.
It has been claimed that, since the 1960s, the medical model has been challenged by disabled people on the basis that it did not reflect their experiences of disability and that social policies which were based on the medical model discriminated against them and maintained them in a relationship of dependence on either charity or state benefits. Disabled people therefore developed a new understanding of disability which they called the social model and which reflected their own experiential knowledge of being disabled.
Unlike the medical model, the social model moved the focus of the causes of disability from the individual impaired body to the collective social effects of a society which is constructed for the benefits of non-disabled people. Disabled people called for social and economic policies to be based on a social formulation of disability that would remove the relationship of dependency established by the medical model and maintained by a reliance on charity to enable them to live independently. The move to a social model would include the opportunity to gain economic independence through employment. It was considered important that disabled people should be able to take control of research on disability so that research could be based on a social model and findings could be used by disabled people for their own emancipation rather than just to enhance the career prospects of traditional researchers (Finkelstein 2001). However, as a disabled researcher I found the a priori acceptance of the social model in emancipatory disability research problematic. It offered no assistance to disabled researchers to counter traditional intellectual concepts of valid research methodologies which (in the majority of cases) assume researchers do not have impairments and need not take account of the implications of the impairments of research subjects.
A Gramscian framework would suggest that disabled people who no longer accepted the medical model developed a new form of good sense and that those who advocated a social model can be seen as organic intellectuals. Their task was to replace the medical model with the social model so that the latter would become common sense initially for all disabled people and ultimately for the whole of society so that it would inform social policies and practice. If such an analysis is correct, then it would be expected that there would be historical data to support it. However, the historical data used in this thesis suggests that such an analysis is problematic.
It has been demonstrated in Chapters 4 and 5 that the argument that the medical model has been historically dominant and that it is only since the 1960s that disabled people began to challenge it is incorrect. Taking the example of the NLB, it was suggested that their actions can be seen to mirror those of current organic intellectuals who have challenged the medical model of disability. Whilst some writers (see Barnes 1990; Campbell & Oliver 1996; Humphries & Gordon 1992) acknowledge the existence of the NLB they have failed to recognize the significance of these early political and social struggles for economic emancipation. It has been argued that disabled people in the late nineteenth and early twentieth centuries were politically active, organised and influential in achieving some social change. Therefore claims that the politicising of disability is a relatively new phenomenon (Oliver & Zarb 1989) are incorrect.
The evidence also questions the implication (Barnes 1997; Finkelstein 1981; Oliver 1990) that, historically, disabled people have been passive victims of medical oppression and charities. Some blind people were politically active and aware individuals who were able to bring about the establishment of schools and training provision in order to facilitate the inclusion of many blind people into society (HMSO 1951). Using the example of Henshaw’s Blind Asylum it was shown how - insofar as ‘models’ of disability can be said to have been evident - a medical diagnosis was used merely to confirm impairment group membership, whilst the barriers to inclusion and participation in society were recognised to be rooted in social practice. So, for example, once impairment was established children were taught through alternative methods of communication which included Braille and embossed models to facilitate their education (Henshaw’s 1928).
Similarly in a review of legislation on disability it was suggested that impairment was used merely as a means to identify group membership. The remedies that were prescribed in the legislation involved attempts to remove disabling barriers for impairment groups and these focused on altering the social environment. Far from being passive victims of oppressive practices, organized, disabled, organic intellectuals challenged dominant formulations of disability and created a good sense understanding which called for economic emancipation (Lawley 1920; PKTBAC, 1923). This gained wider hegemonic acceptance as common sense as shown by newspaper accounts (Birmingham Gazette 1920; Daily Herald 1920; Leicester Daily Mercury 1920; Manchester Guardian 1920; The Times 1920) and in the support offered by other trade unions. This resulted in disabled people resisting their oppressive relationship with many charities through industrial action and being proactive in influencing legislation with the introduction of the Blind Persons Act (1920) (Blind Advocate 1918a, 1918b, 1920; Gregory 1923).
In their struggle for equality the NLB embraced medical knowledge since, for them, it represented a common sense response to many of the disabling consequences of blindness. Medical advances had improved the potential to prevent blindness in children and it was a senior member of the NLB, Ben Purse, who fought for medical intervention to prevent children being born blind (The New Beacon 1950). From a social model perspective this action is likely to be considered disablist. Social model proponents would tend to argue that by calling for such medical intervention the focus has been shifted away from the goal of economic emancipation and onto the longer term potential for cure through medical intervention. It might therefore be argued that Purse was a victim of ‘false consciousness’. However, it is possible to contest this view because Purse and the NLB accepted that although the principal battle for emancipation was to be achieved by changing the political and social environments, blindness held consequences which could not be alleviated simply by changing these factors. In other words, some aspects of blindness disable and the enduring common sense view has been that disability is something which can be alleviated both by altering social barriers and (in certain cases) by medical intervention. So, far from being false consciousness this can be described as a realist view. This is entirely at odds with the social model view that any medical intervention to prevent or mitigate disability by ‘fixing’ the impaired body discriminates against the disabled by the elevation of the able-bodied to a preferential social position, because ‘able-bodiedness’ is the ideal state of being. However, this seems to be the ‘traumatic projectionist’ view where all blame for disability is switched away from the incurably impaired body. Quite possibly, it is this unresolved trauma that renders impairment sacred and untouchable within the social model and makes the model itself something of a riddle. The paradox is that although being disabled requires an impairment, the impairment has no effect on disability.
When organisations attempted to engage disabled people in work a problem of the inherent claim of homogeneity was clear. Henshaw’s tried to engage severely impaired people, whereas Thermega (although claiming to assist 'disabled people') did so by selecting those whom could most easily be assimilated. Hence, Thermega identifies a historical, traditional intellectual understanding which still persists as using the generic term 'disability' can mask the obvious reality that some impairment specific groups will always find entry into the labour market difficult (Hibbert 2000). So it would seem that if (as social model followers insist it should be) disability is thought of as a generic concept then there will be negative implications for many disabled people. Only if impairment is acknowledged as a contributory cause of disability and the social implications of impairment are explored (Hughes 1999; Hughes & Paterson 1997; Paterson & Hughes 1999) can universal claims of assisting disabled people into paid employment honestly be made although selection amongst the group may distort any demographic analysis.
From the evidence of people who gained impairments as a consequence of the Second World War (when many medical interventions were welcomed and requested) it becomes difficult to envisage how a radical version of a social model could gain general acceptance as common sense. If however, as is being suggested, in practice the dominant model is actually a socio-medical one it might be expected that a ‘weaker’ version of the social model is present in contemporary organisations in ways that reflect more traditional intellectual formulations of disability. By comparing two organizations -NDDP and SMO - the remaining research questions of whether mutually exclusive models of disability are in operation, and if the application of a social model can improve employment opportunities for disabled people were addressed.
Organisational comparisons
Chapters 6, 7 and 8 examined the behaviour of two organisations in order to determine their intellectual formulations of disability and to ascertain if either displayed signs of adherence to distinct models of disability. An assessment was also made of whether either provided better employment opportunities by adopting a different understanding of disability. Both NDDP and SMO operated with public funding because stakeholders supported the idea that both organizations were expected to deliver the socially desirable goal of the improvement of employment opportunities for disabled people. As a result, both held similar organisational rationalities and a political desire to confirm to stakeholders that their financial investment was demonstrably delivering the organisational mission. Both attempted to achieve their goals and hence improve organisational legitimacy with stakeholders by adopting a technical rationality to their operations (see Chapter 2). However, although both applied the generic concept of 'disability', in reality impairment had more salience in terms of operations and practices.
NDDP had a client base that was voluntary and from a wide range of different types of impaired people. Hence, as the numbers using the pilot were relatively large in comparison to SMO and in many cases clients had worked previously, the task of assisting some of these clients into work was considerably easier than that faced by SMO. As SMO's clients were predominantly referrals from social services and were people with varying levels of learning impairment some of whom did not want or were not capable of efficient working, finding employment for this group was significantly more difficult. However, because the organisation was driven by social model ideology impairment could not be used as a reason to explain failure in finding their clients paid work. If employees attempted to raise issues of impairment as contributory factors in creating personal disadvantage they were ruthlessly silenced with implied threats of dismissal.
The organisation implemented a political rationality which silenced dissent and promoted the myth of a successful application of social model ideology in practice. Although SMO produced this political rhetoric, in reality staff unofficially accepted that their task of finding employment was affected because of the impairment characteristics of clients. Hence both organisations accepted impairment and social barriers as contributors in creating disability and both applied similar remedies to overcome disabling barriers. In a strictly quantative measure, NDDP found employment for more disabled people than SMO. Although SMO found it impossible to locate any reasons for their lack of success in the specificity of impairment it can be argued (as did many of their staff) that this was a significant difference between the two organisations. Although for the committed, the disabled social model advocates that disregarding the consequences of impairment represented good sense, it never became uncritically accepted as common sense by the majority of organisational members and hence did not become hegemonic. This was despite training sessions which were intended to explain social model ideology and thus attempt to ensure it became more widely understood.
NDDP training reflected the view that ‘disability’ is a combination of factors and recognised that impairment can often impose limitations on performance for many disabled people. The remedy lay in altering environmental and attitudinal barriers in order to increase opportunities for as many clients as possible to participate in paid work. The approach taken at NDDP towards internal staff recruitment was one of assimilation where disabled staff could also participate in technical training sessions to improve their work-related skills. The staff recruited had impairments which did not require a significant alteration to working practices and procedures, something that may have been necessary if more severely impaired people were involved. SMO, however, promoted a rhetoric of non-disabling employment practice whilst in reality their technical training of staff also depended on assimilation. SMO recruited people into technical posts who were best suited for the job, placing this criterion over any considerations of disability status. These non-disabled staff then received technical training similar to that offered to comparable staff at NDDP. Once the rhetoric is stripped away, both organisations effectively followed both social and medical models. In practice SMO could not escape the reality of impaired bodies which meant they could not operationalise a social model, and so the two models could not be considered as mutually exclusive.
If disability awareness training is considered again any differences in common sense understandings of staff were minimal. NDDP provided disability awareness training based on a combined socio-medical model. The effects of impairment were explored together with the promotion of an understanding that barriers to participation are largely social and in many cases can and should be removed. Staff uncritically accepted this view as common sense and applied the ideology in everyday practice. In contrast, senior members of SMO attempted to force staff to accept their interpretations of the social model, a strategy which largely failed. Within the wider organisation of SMO there was no consensus that social model doctrines represented good sense, and the strong element of coercion in training sessions bred resistance making it less likely that what was being enforced would ever become hegemonic and uncritically accepted as common sense. Interestingly, if definitions of disability used to actually inform practice by the two organisations are deconstructed then the understandings of disability evident in both cases would seem to mirror a socio-medical model.
Unsurprisingly similar conclusions were reached when the issue of disability access was compared between the two organisations. For many, the issue of disability access is understood largely to be that of physical access for mobility impaired individuals as shown by the ubiquitous use of the familiar symbol of a person in a wheelchair. Although an important aspect of access, physical access alone is not the only issue when a wider consideration is given. Access must, for example, include access to information for all impairment groups. So when the accessibility of both organisations was discussed this wider concept was used to see if distinct models of disability were applied and if the application of the social model in practice improved access and hence increased employment opportunities.
Both organisations had no physical barriers preventing wheelchair access to their premises. However, NDDP provided better environmental access because of its city centre location close to public transport links. SMO, due to factors outside their control, was located in an area of high street crime with no good public transport links nearby. Both provided equal access to information in formats requested by any disabled stakeholders, wherever possible, so no distinction could be made based on understandings gleaned from models of disability. However, where NDDP had no ideological conflict in accepting that impairment sometimes makes access to information problematic, SMO upheld a social model fallacy that issues of access to information can be overcome without any consideration of the consequences of impairment. As a result, SMO did not provide equal access to information for all stakeholders. In effect, SMO by ignoring considerations of impairment sought to ensure that sensory impaired bodies were demoted to a secondary status. What occurred could be regarded as the disappearance of some impaired bodies (Hughes & Paterson 1997; Paterson & Hughes 1999) under the 'umbrella' of the social model. However, SMO fought ideological battles with external agencies that they deemed to be discriminatory in terms of poor or inappropriate access. SMO presented staff with an unconvincing rhetoric of token and taboo. The token was the demonstrable fact that some physical barriers could be removed to provide access whereas the taboo became the unspeakable knowledge that some consequences of impairment do, in reality, disable.
Implications of the research
This research has direct implications for both the disability movement and for government policy. It was found that the attempt to squeeze formulations of disability into the binary opposites of the social and medical models is highly problematic. The argument rests on the assertion that if traditional intellectual concepts of disability are analysed these reveal that dominant understandings throughout history have been consistent with a much more flexible socio-medical model. Effectively a social model of disability pre-existed Oliver (1990) albeit ‘wrapped up’ inside the dominant traditional intellectual understandings of the time.
This research shows that traditional intellectual formulations of disability have a historical continuity which, despite rhetoric and political influence, survives even in a social model organisation. Thermega held contradictory common sense relations with charities. They considered the philanthropy and pity on which many charities traded to be a principal cause of oppression for disabled workers despite being funded and assisted financially by a charity. Likewise, SMO had a difficult and contradictory common sense relationship with charity. Here organic intellectuals proposed that traditional charities were the cause of oppression yet the organisation actively sought and gained charitable status and ran a traditional charity clothing shop.
Thermega homogenised disability. This resulted in the organisation having to select efficient workers from a pool of war survivors with a variety of impairments for progression into open employment whilst those with more severe impairments who were considered irredeemable in terms of such employment were institutionalised. The claims of homogeneity in the disability movement must be questioned if they result in hierarchies and leave some impairment groups consigned to silence and dependency.
If the physically impaired members of UPIAS, when they were designing the social model of disability, had grasped the idea that disability affected all impaired people and impairments varied in type and severity then the social model may well have displayed very different definitions and may have more hegemonic resonance in wider society. However, even as the model developed towards its political claim to represent all disabled people, its ideology was always going to prove difficult for some impairment groups. This was clearly in evidence at SMO where, despite the efforts to train staff in social model ideology, it failed to become hegemonic and uncritically accepted as common sense. Only if the organisation had been run by and for physically impaired people could the social model have had full explanatory power. The contradictions, inconsistencies and hierarchy emerged as those with power in SMO fallaciously claimed that the barriers they personally faced as wheelchair users were also the primary cause of disability for their learning impaired clients and sensory impaired stakeholders.
This analysis may be seen to be politically dangerous by some in the disability movement. Nonetheless, it could be said that the underlying ideology of the social model is created on a false premise and (as recently argued by Shakespeare & Watson 2002) that the model has served its political purpose and should now be abandoned. However, such a suggestion rests on the belief that the social barriers model is new and that oppositional models have historically been in evidence. The analysis presented in this thesis shows that this understanding is questionable. New models of disability are unnecessary since common sense understandings of disability that imply a socio-medical model seem to be an adequate starting point for change. So, rather than attempting to alter what has become for some a ‘holy grail’ (Finkelstein 2000, 2001, 2002) the social barriers model could be complemented by a sociology of impairment; something recognised as deficient in social model theory (Abberley 1987; Oliver 1990) although to date this weakness has not been adequately addressed (Paterson & Hughes 1999). From a Gramscian perspective, what is being called for is a good sense challenge to traditional intellectual formulations which have been principally concerned with the social barriers and medical determination of impairment. It is not being argued that civil rights or matters of equality in employment for disabled people should not be pursued further but that the social model is too impairment elitist for the task and would seem to have impeded emancipatory action in SMO and elsewhere (see for example, Humphrey 2000).
Policy implications
In the introduction to this thesis the political use of a disabled population as one means of controlling unemployment levels in the general working population was discussed. This aspect of 'disability' effectively as a reserve for unemployed people is still a concern for government today. Research has identified that if many presently claiming incapacity benefit capable of work were transferred from incapacity to unemployment benefit, then the present unemployment figures would increase from 900,000 to 2.5 million (New Statesman 2004). Clearly such an increase has political implications which do not directly relate to impairment but rather the structural and political implications of policy. When such large numbers of benefit dependent people enter the political arena then economic rationality dictates 'something must be done' (New Statesman 2004) to reduce what becomes a homogeneous mass 'the disabled'. Hence in common with social model ideology, government policy now treats disability as a homogeneous concept. Policy approaches the employment of disabled people through liberal and radical measures of providing fair and open policies and procedures coupled with a monitoring system to quantify progress. This conforms to liberal and radical approaches to equality as defined by Jewson & Mason (1986) but is predicated on the assumption that assimilation is the route to equality for disabled people. As policy applies only the concepts of work or dependency for disabled people then for those who cannot assimilate the only alternative appears to be dependency.
As initial results from the NDDP pilots suggest that the programme has not succeeded in achieving its mission (Calvi 2003; Disability Now 2002; Goss 2001) then it could be argued that for a considerable number of working age disabled people the alternative is likely to be social exclusion and state dependency. However, history suggests that many more disabled people could be included into the workforce if the public ‘will’ existed.
It is acknowledged that during the Second World War almost full employment occurred for many working age disabled people (Humphreys & Gordon 1992). Whilst this probably occurred only because of the extreme labour shortages and the trend was reversed after the war when a non-disabled labour surplus returned (HMSO 1951) what is evident, nonetheless, is that many severely impaired people were integrated/assimilated into the workforce at that time. There is also evidence from earlier times that integration strategies were successfully employed in open industries without undue financial implications for the employer.
In Chapter 4, it was noted that the practices of the Ford Motor Company enabled the employment of many different impaired workers (Chandley 1943). During the 1920s in their ‘River Rouge’ Detroit plant, Ford altered working practices and processes to allow the integration of 10,000 disabled people into the workforce. Chandley reproduced a pamphlet from Ford which showed how a demographic study of the surrounding districts had estimated the number of impaired people living there as a percentage of the local population. Ford instructed managers to employ similar percentages in his plant. This was achieved by altering the working environment which allowed the integration of blind, deaf and mobility impaired workers employing them in similar jobs and at equal pay to their non-disabled colleagues. Some of Ford’s other employment practices have been criticised as authoritarian (Corbett 1994) with many of the jobs being repetitive. It could also have been the case that the high labour turnover rate had some influence on the decision to engage disabled people; perhaps again it was a response to shortages of non-impaired workers. Notwithstanding these considerations, however, the point is that if the ‘will’ exists employment can be found for people with relatively severe impairments.
It is not being argued that all disabled people are capable of paid work in open employment or that all desire to engage in such work. Nonetheless, for those who do and if a more equitable outcome is to be achieved, then the present reliance on assimilation achieved through making 'reasonable adjustments' would appear to be ineffective. The two examples provided did produce greater inclusion for disabled people in the workforce but this was achieved by integration and acknowledging 'differences' which required actions in changing working processes and procedures to enable participation by impaired people. Thus if the government’s rhetoric of social inclusion through paid work is to become a reality it would follow that similar equality strategies should be taken seriously. The record of government is no better than either the private or the voluntary sector when it comes to providing employment opportunities for disabled people (Disability Now 2001; Hibbert 2000). Perhaps, then, the government itself should pilot an initiative which would demonstrate to other sectors that integration strategies work, that a business case can be made and that such employment practices are not necessarily financially detrimental to business.
Research limitations and future proposals
The number and size of participating organizations in this research was limited although the two were of comparable size. Additionally, there were limitations regarding the time and resources available to conduct follow-up interviews and search archives for additional historical data.
My own subjective experience of visual impairment and the problems this has caused me as a researcher have also placed certain limits on the work both in the field and more especially in an academic context. The very discourse of research with its emphasis on ‘observation’ assumes a sighted researcher whilst the entire academic process with its heavy reliance on the written word, privileges the non-blind. It is largely because it is not possible to submit a thesis in anything other than a written format that this thesis has taken so long to complete.
The following recommendations are made for further research:
• Historical research to look for further evidence of models of disability at work in organisations and wider society
• Studies of more social model compliant organisations so that comparisons can be made with the findings at SMO
• In-depth study of job structures and working environments to identify ways in which workplaces can accommodate impaired people
• A review of government recruitment and selection policies to determine why the rhetoric of policy does not translate into reality with regard to their own employment of disabled people in the public sector
• A methodological review into the ways impaired researchers engage in the research process which may challenge traditional intellectual understandings of what constitutes valid research.
Chapter 10
Conducting Research and Writing a Doctoral Thesis:
Reflections from a Disabled Perspective
As there has been an emphasis on methodological debates within research on disability and my own methodological arguments in preceding chapters this thesis would be incomplete without some reflection on my experience of the research process. There are a number of issues that my experiences lead me to highlight: working with supervisors; finding a place to work; the use of Non-Medical Helpers (NMH); the use of adaptive technologies, and writing using computer-generated speech systems. Whilst the first two of these are often discussed in methodological texts they are rarely discussed in relation to researching disability. These issues are raised not just because they are rarely discussed in methodological writings but also in the hope that other visually impaired students who embark on doctoral research will be able to draw lessons from my experiential knowledge and in order to raise some issues which those involved in providing support for doctoral students may consider for future students.
Embarking on the research: working with supervisors
All the methodological discussions on researching disability suggest that disabled people are best placed to research disability. As a consequence (and to fulfil the university’s requirement of supervision by two members) when I first registered as a PhD student, in conjunction with my Director of Studies, I found a second supervisor who had previously conducted research on disability. This supervisor self-classified as disabled and had a physical impairment. He was active in the disability movement and supported the social model of disability. Although initially I was sympathetic to the social model as my research developed I became increasingly critical of its ability to explain my experiential knowledge of being disabled. My disabled supervisor however found any criticisms of this model difficult to support and attempted to persuade me that the difficulties I was having applying the model to my research were essentially an effect of a lack of understanding.
This did not provide a supportive environment from which to explore my views and reach my own conclusions based on evidence. Moreover as I began to write and send him draft documents it became increasingly clear that whilst we were both disabled our forms of impairment produced very little common ground between us. Although disabled he did not understand how my impairment and the nature of the technological adaptations I was required to use in order to write had an impact on some aspects of my writing. On several occasions he criticized my written work for the poor standard of layout and inconsistencies of font size. At that stage of my research, given my lack of confidence in my ability to produce a PhD thesis, criticisms of this kind only served to further undermine my confidence which my Director of Studies spent considerable amounts of time counteracting. The problems I was experiencing with my disabled supervisor were resolved when the Director of Studies moved institutions and I moved my PhD research with her. My experiences suggest that a disabled, social model compliant, supervisor may not necessarily be the most appropriate person to supervise disabled students conducting critical research in the arena of disability.
Embarking on the research: finding a place to work
When I began the research for this thesis, I could visually detect text on a visual display unit (VDU) with a highly magnified screen. This meant that I could read page numbers from books or articles and thus independently access texts for scanning. My vision has now declined to a level where I can no longer use a VDU screen but depend entirely on a computer speech output system. This deterioration in my condition has affected both the cost of completing a PhD and where the research could practically be conducted.
Generally universities expect full-time students to be based on university premises for a significant proportion of their time. In order to comply with this the university would need to purchase dedicated adapted equipment for my sole use. Often PhD students are required to share offices and computer equipment. This would mean that if sighted students needed to use the same computer as I they would need to disable the speech system and then restore it when they had finished. If the system is not restored, the visually impaired student is disabled until the adaptive software is reactivated by someone else. The university’s internal network also has to be capable of adaptation. For example, my access to computing depends upon the speech output system software being loaded before any system security checks are required, because if the speech is not available, then I cannot detect the security questions or confirm I have entered passwords correctly. Other environmental factors also need to be taken into account.
When I had some residual visual ability I could only benefit from using a VDU under conditions of low or no background lighting. Whilst such an environment would remove physical barriers to working they would create a disabling, potentially dangerous environment for anyone sharing the office that did not share my impairment. Asking a number of visually impaired students to share an office would not necessarily resolve the problem because some visually impaired people require high levels of light and this would disable me. It may therefore not be possible to provide an environment which does not disable people with visual impairments because the particular form of impairment may require different adaptations to the environment. Since my impairment has deteriorated, the need for a room with low level light is no longer necessary. Now I need to be able to use a speech output system. Unless I was to use headphones, an uncomfortable and isolating piece of technology when used over long periods of time, using a speech output system can be irritating and distracting for others working in the vicinity. The solution would seem to be single occupancy offices which have been adapted to requirements of the individual. Whilst this is an ideal solution, given that space is often a scarce resource in universities the possibilities of achieving this in practice is unlikely and could result in universities indirectly discriminating against disabled students who require resources that are in short supply.
I resolved these problems by working primarily from home. Whilst this was isolating and I often missed discussions with my peers, I was able to work in a familiar controlled environment with no need for headphones. This could not however have been achieved without the active encouragement and support of my supervisor. Finding a place to work did not however resolve all my problems.
Accessing buildings and information: non-medical helpers (NMH)
In order to conduct this research I was provided with a three year research grant and a disability allowance by the Economic and Social Research Council (ESRC). The disability allowance enabled the purchase of technological adaptations and the services of a NMH for the duration of the research grant. In my case, the latter took the form of a sighted person who largely assisted in overcoming the barriers to research which confront blind people accessing information in inaccessible formats and which are discussed in Chapter 3.
The ESRC accepted that my impairment required the assistance of a ‘reader’ but as I do not have a mobility impairment, they did not accept that they should provide funds to enable me to access buildings such as libraries located in unfamiliar areas. They suggested that if I needed assistance to meet a NMH in an unfamiliar location I should contact the relevant local social services who are obliged to provide me with mobility training in their area. As I did not know, at that time, where relevant archive documents were housed and since from previous experience of the local authority, I knew that I might have to wait up to eighteen months for mobility training this was not a realistic option. I was therefore constrained to rely on the willingness of my NMH to provide mobility assistance. I was unable to pay for this service and so was effectively relying on charity. Clearly this did not enable independent access to locations.
There were also other difficulties I experienced in using a NMH to assist in this research. Although the role of a NMH may seem to be straightforward in that s/he helps find and read texts, in practice the relationship becomes far more subtle. The NMH is required to act on their own initiative when searching through what can often be large amounts of material in archived filing systems, many of which are unstructured. In order to be able to perform searches in a reasonable time scale, the NMH needs to be familiar with the subject matter of the research and to understand the arguments the research is trying to test. It is only by understanding both, that they are then able to select what they consider to be relevant. When searching through boxes of non-indexed trade union documents it was impractical for my NMH to read all the documents ‘out loud’ because this would have taken too long and even if there had been sufficient time there were insufficient funds to pay for this. From a social model perspective then, the only way that I could have had independent access to documentary sources would have been if the owners of the documents had made their contents available in audio format or electronically so that I could have selected what I deemed relevant. This facility was not available and therefore my NMH effectively acted as a ‘filter’ of which documents were relevant and this might have introduced an element of ‘research contamination’ (Miller & Glassner, 1997, 126-27). Although I tried to ensure that my NMH understood the nature of my research, I could not, because of my impairment and because she was not a trained researcher, be sure that she had not missed information which would have been relevant. This of course would not have been a problem for a sighted person who had other kinds of impairments.
Given the nature of my impairment and my need to help the NMH evaluate which documents were relevant or not, the library provided a small room so we could talk without distracting other library users. Once relevant documents had been identified, it should have been possible to photocopy documents and then scan them as text into my computer. However the quality of documents was often poor, the fonts in which they were printed are not easily recognized and because there were often images on the documents, this strategy proved to be inappropriate. Therefore once relevant documents had been identified the NMH then read them onto audio tape noting page numbers for later citation purposes, and I then transcribed these onto computer files, as I did with tape recorded interviews and field notes. However whilst the use of technology was helpful, it by no means removed all barriers to accessing and using information which had been constructed in formats which assume a sighted reader.
Accessing information: adaptive technologies
Braille is generally assumed to allow equal access to text for blind people. I have never been taught Braille, so if I had decided to use this method then considerable time and effort would have been needed for me to learn the technique. In considering whether to investing time in learning to read Braille I considered other difficulties with it. If a printed and Braille version of the same text such as the Bible (Jerusalem version) are compared, the printed copy can be found in one volume, whereas a Braille version would be in 75 volumes. Considering the number of texts that PhD thesis refers to, this would have required significant storage space. Finally, the availability of texts that have been transcribed into Braille is very limited with (typically) an 18 month wait between a text being published and it being available in Braille. It is also the case that Braille producers are reluctant to retranslate later editions of texts due primarily to their limited resources and demands for previously un-transcribed work to be given a higher priority. For all of these practical reasons, Braille was not considered as an appropriate adaptive technology and consequently, alternative methods were required.
Any text can be sent to the Royal National Institute for the Blind (RNIB) and they will transcribe the content onto audio cassette without charge. This has the added benefit of including verbal descriptions of pictures or graphics. On average, RNIB will read a twenty-page plain text article onto one side of a C90 audio cassette and return it within two weeks. However, the turnaround time depends on the demand for the service and the length and complexity of the information submitted for transcription and so can take significantly longer than two weeks. When tapes arrive the cassette has the title of the document in Braille and in print on the outside. This of course poses the first problem to a visually impaired person who does not read Braille - that they have no way of knowing what is on the tape unless they either listen to it or ask someone else to tell them what it contains. As an NMH cannot be with the researcher all the time, the first task then is to listen to it and then write a summary of what it contains onto a bibliographic data base. This will enable the researcher to locate a particular author’s argument at a later date by conducting a keyword search. Clearly this process is no different from one that might be used by a sighted researcher. But here the similarity ends. When a sighted researcher has located a source, they would then go to a shelf or a filing cabinet and look for the text they need. This is much more complicated for a visually impaired person. A 200 page book including contents and bibliography would translate into eleven or twelve C90 cassettes. When faced with 500 individual cassettes, finding the right cassette, as there is no independent way of knowing what is on each cassette without listening to the first five to ten minutes of each recorded book or article, becomes a time consuming task. In contrast a sighted researcher would merely read the title of a book or article and either use or discard it.
Retrieving information from audio tapes proved to be particularly difficult and I switched to scanning documents directly into a computer and used speech output software to read back to me the scanned document. Whilst this overcame some of the problems of retrieving extracts of texts, scanning documents raised different problems. The success of scanning depends very much on the quality of the original document. If documents had been defaced in any way – such as other users of the original documents underlining sections, or making comments in margins - this would be picked up by the optical character recognition (OCR) system that the scanner uses to translate the document into a format that could be read by the speech output software. Similarly if there were any visual images such as graphics or photographs the OCR would attempt to translate such images into plain text. This led to significant inaccuracies in the electronic text and required a significant amount of time to ‘clean’ the files so that they could be read back to me by the speech output software.
In order to meet academic standards required in the submission of a thesis, when making citations the page number on which the cited quotation appears has to be included in the reference in the text. In original texts, page numbers may be located on various places on the page which presents no problems for a sighted person citing from a document. However when a document has been scanned and the speech output system reads the page number there is no way of knowing whether the page number that is read out refers to the page that has just been read out or the page that is about to be read out. The only way of knowing whether it refers to one or the other is that the person listening knows whether the page number on the original document appeared at the top or bottom of a page. For a visually impaired person this is not possible without the assistance of a sighted reader to check that the cited page number is correct.
The principal method of accessing text that was used in this research was a speech output based computer. The stability of the speech system is primarily based upon its use as a companion to word processing, where plain text is standard and any graphical symbols can be removed. However, when the system is asked to interrogate the Internet, the variety of website designs and the inclusion of substantial graphical formats caused, on many occasions, the failure and ‘locking’ of the system. Thus even when websites provided access to information in plain text format, my speech output system would ‘lock’ whilst trying to find the icon that would take me to that format. I made the decision after six months of attempting to use the Internet that my time would be more effectively used concentrating on writing and scanning documents and relying on the NMHs to access documents from the Internet. Relevant documents could then be e-mailed to me as attachments by the NMH once the graphics had been stripped out and the documents transferred into plain text format. Thus, the process of literature searching was made possible, although from the outset I had to develop a system of electronic filing, cross-referencing and secure ‘backed up’ storage.
Access to printed information is possible for a blind person albeit with much greater dependency on technology and self-developed retrieval systems. However writing presents a different range of problems to users who are dependent upon speech-generated computer systems.
Writing the thesis: computer-generated speech systems
Using speech output systems requires time to become familiar with the flat, mechanical tone of the computer-generated voice. With the system set at the default speed it takes approximately 75 minutes to read an 8000 word article. Once the listener has got used to the sound of the voice the speed can be increased so that the same text can be read in 45 minutes. However, the system has to be set so that it does not read any punctuation. For example, if the speech output system were to read: ‘said Smith’ (Jones, A., 1999), it would say,
Left double quotation said capital Smith right double quotation left paren capital Jones comma capital a dot comma one thousand nine hundred and ninety nine right paren comma.
Whilst the blind listener is provided with both punctuation and substantive words the spoken punctuation significantly reduces comprehensibility. With some heavily punctuated writings, the speech output content can approach an even split between the substantive text of the article and its punctuation. The same issues of course arise when writing and reviewing what has been written. Given the amount of editing that is done when writing, reviewing what has been written takes significantly longer using this system than it does for someone reading the written word. In order to reduce the time it takes for the system to read back what has been written, it becomes necessary to only review punctuation and paragraph construction once the author feels they have conveyed the substantive argument. However as can be seen by the example given, when punctuation is included in reading back the text, it can be easy to omit punctuation and this of course can sometimes completely change the meaning that the author intended. This in turn means that when supervisors read draft documents they need to spend more time than they otherwise would trying to make sense of the authors intended meaning.
Supervisors are of course an important resource when writing PhD theses. Their feedback on the development of the substantive arguments is critical. With sighted supervisors and students such feedback is generally supplied verbally in meetings and by writing comments on hard copies of documents. Whilst verbal feedback was equally appropriate for me, written comments on hard copies was not appropriate. We therefore developed a system in which written feedback was provided electronically. This consisted of inserting comments within text in square brackets and prefaced with my name. A comment would therefore be written as for example Peter, this point needs to be developed. Writing the comment in bold enabled my supervisor to visually locate earlier feedback and ensure that the issue had been dealt with in subsequent drafts. Prefacing comments with my name was beneficial for me because it did not require the ‘read punctuation’ facility to be active and did not therefore slow down the reading process. If electronic feedback had been provided for a sighted student, the ‘insert comment’ facility on word processing software could have been used and the student would be able to see where a comment had been inserted. With speech output systems this is much more difficult to use.
In order to use the ‘insert comment’ facility the ‘read punctuation’ facility would need to be active and speech output system would have to be instructed to ‘read colour’. When the latter is activated the system reads out not only the colour of the text, but also the background colour, and style format including font size. This then would mean that the amount of punctuation, formatting and colour that is read out by far outweighs the amount of reading of substantive text. This not only becomes confusing to the listener, but also the more the system is asked to read the slower it becomes and the greater the possibility that it will lock completely. It may of course be that it is possible to set the system up differently to eliminate these problems. However my level of technical knowledge did not enable this and training to increase my technical skills was financially prohibitive.
As a blind author I also encountered other significant problems in writing this thesis which relate to both my impairment and to the length of theses. As a thesis develops it may, as in the case for this thesis, go through a number of iterations and require significant amounts of editing and restructuring. Restructuring may require moving sections within or across chapters. For a sighted author this can be achieved relatively quickly because they are able to scan chapters visually, ‘cut and paste’ sections or remove sections where there is repetition. For a blind author this becomes a major time consuming exercise. For example, a supervisors’ comment may simply say Peter, this paragraph seems to be a repetition of the points you made in paragraph two on page three of chapter two, or is this a more subtle point you are trying to make?. In order to deal with this comment I would need to return to chapter two, locate page three and paragraph two. I could only do this by turning on the “read punctuation” facility on the speech output system which of course makes it much slower to listen to. I would need to open the file which contains chapter two and compare the two paragraphs. However having more than one document open at a time also slows the speech output system down and more often than not the system locks and requires re-booting. I found therefore that rewriting chapters in order to address comments from my supervisor was quicker than trying to cut and paste within or between chapters. This however often resulted in omitting sections in the new version of a chapter and so the whole process would start again.
As the thesis grew in volume the time required for me to read and review my work increased in direct proportion to the word length. This together with rewriting and restructuring made it increasingly difficult for me to keep track of whether I had included particular arguments in the new draft, where I had made them, or whether relevant sections had been omitted in re-drafting. In order to check this I would need to listen to the entire thesis a number of times. The amount of concentration required to listen to a computer generated voice is substantial and this meant that I needed to take frequent breaks which again extends the amount of editing time and fragments the process.
Universities generally see the writing up stage of a thesis as one in which the student requires less rather than more of their supervisors support and time. Supervisors are therefore often not credited with as much time in their workload for supervising final year PhD students. In my case, because of my impairment, I required even more support than I had done in the earlier stages of my research in order to manage what had become an unwieldy document. Her role became one of not only checking that my substantive argument met the standards of PhD level research but also one of editor, ensuring that arguments were expressed clearly and logically, that there was no repetition, and that relevant sections had not been lost in re-drafting. She was not however credited with any more time for these activities by her employers. This can of course have a significant impact on the willingness of academic staff to supervise disabled students or they may be more willing to supervise disabled students with particular forms of impairments rather than others. In order to ensure that people with particular forms of impairment are not indirectly discriminated against, and if disabled students are expected to produce theses that conform to standards which assume a non disabled writer, then universities need to ensure that adequate resources are provided for disabled students, including providing editing and proof-reading services by staff who are conversant with academic writing conventions. Such a service cannot be undertaken by a NMH who does not have these skills. It should in other words not be a ‘problem’ which individual supervisors and students have to resolve as best they can. In my case my supervisor was able to locate an academic colleague who has a doctorate and provides a proof reading service to proof read the final version of my thesis. However it is not just universities who need to consider the amount of support that disabled students need to complete their studies.
As I indicated earlier, the research for this thesis was funded by a three year research grant provided by the ESRC. This consisted of a maintenance grant, a one off payment in the first year to purchase the necessary technology and a disability allowance in order to fund a NMH for the duration of the grant. Although funding is provided for three years, grant holders can request extra time to complete their studies. This normally consists of a fourth year to finish writing up their thesis but there is no financial support provided for any extra time. Given my description of conducting the research for this thesis and in particular the time it takes me to complete tasks which would be relatively quick for a sighted researcher, I made an application to the ESRC to extend my registration initially for a fourth year and then for a fifth year. Whilst the fourth year was granted without any difficulty, the ESRC required rather more persuasion to extend the period of study beyond this but eventually agreed to a six month extension in the fifth year and an agreement to consider a further six months if this should be required. However, they rejected my application for continued funding for editing assistance from a NMH. As is evident from my earlier discussion, without such support, I simply could not have completed this research.
Fortunately I was able to secure a university bursary and a grant from my local authority to enable me to employ a non-medical helper in the fourth year and fifth year. However, the total amount of these funds did not provide me with living expenses. ESRC pointed out that in the fourth year of study (and fifth in my case) candidates were expected to find part time work in order to support themselves. Given the difficulties disabled people have in finding employment the ESRC did not consider whether this was a realistic option. Had I been able to find a part time job this would have required an even longer extension to my period of study. Moreover despite explaining the problems I was having, they failed to understand how my impairment was having an impact on the writing up of the thesis. Whilst the ESRC will consider an extension of the grant for a fourth year for other groups such as pregnant women or those facing ‘hard language’ difficulties they refused to consider an extension of my grant on the grounds of my impairment and the extra time I would therefore require to complete the thesis. Such a decision seems rather perverse given that it is in their interests to demonstrate that students in receipt of public funds do actually complete their studies.
My reflection on the research process demonstrates that through trial and error I have developed a system which I consider to be none disabling for both me and my supervisor. The development of this system has improved access for me tremendously although it has also involved significantly more commitment of time and work for my supervisor than is usual with non-disabled students. However, it needs to be stressed that the working relationship I developed with my supervisor has been a critical factor in the completion of this thesis. Whilst this may be said of all postgraduate students, given the particular difficulties I have had as a result of my impairment, it should be recognized that disabled students will need much more from this relationship and so present more of a challenge to their supervisors than non-disabled students.
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[1] Ancillary staff, such as cleaners and office maintenance workers were subcontracted and are not included in this analysis
[2] Since completing the research, one disabled person had been promoted to personal advisor, and his former administrative role filled by another disabled person. Thus the employment ratio of disabled to non-disabled rose further to over 30%.
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