Disability on Equal Terms

John Swain, Sally French, John Swain, Sally French

• Publisher: SAGE Publications Ltd
• Year: 2008
• Print ISBN: 9781412919883, 9781412919876
• eBook ISBN: 9781473902695
• Edition: 1
• Topic: Medizin
• Subtopic: Medizinische Theorie, Praxis & Referenz

?Disability on Equal Terms is not a Turgid and difficult book despite its accent on complex and challenging themes. It is a lively and important read? - The Skill Journal, June 2009

`[A] collection of highly readable and scholarly essays that reflect both the theoretical and practical implications of recent developments in the field. This book is essential reading for everyone interested in disability: highly recommended? - Colin Barnes, Centre for Disability Studies, University of Leeds

This authoritative collection of writings examines and challenges traditional notions of disability. Edited and written by leading experts in the field, it offers a multidisciplinary approach to disability studies, incorporating perspectives from a wide range of health and social care services, as well as a distinct and unique emphasis on the views, experiences, work and personal testimonies of disabled people themselves.

The book is divided into three sections, each of which is prefaced by an editorial introduction which brings together the key themes and issues under discussion. Each section:

" Examines the dominant assumptions about disability and impairment and their historical and cultural contexts

" Documents the challenges to such presumptions generated by disabled people themselves

" Explores the implications of such challenges for professional policy and practice

This ground-breaking book will be essential reading for those studying disability studies, social work, nursing, and allied health and social care at all levels. It will also be a thought-provoking and inspiring read for disabled people and activists, professionals and policy makers.

John Swain is based in the School of Health, Community and Education Studies at Northumbria Univeristy. Sally French is based at the Open Univeristy. Previous publications include the co-edited Disabling Barriers, Enabling Environments, Second Edition (SAGE, 2004).

Section II

From A Different Viewpoint

6	Affirming Identity John Swain and Sally French

For us, the editors, the notion of an affirmative model began with Sally’s observation that while tragedy was the dominant view of impairment and disability, the writings of disabled people expressed a far more varied and positive picture. We have written and spoken about the possibilities of an affirmative model of disability and impairment on numerous occasions. The exploration of an affirmative model was part of our motivation for producing this edited book. It is a way of thinking that directly challenges presumptions about the experiences, lifestyles and identities of people with impairments. Throughout history and in most cultures disabled people have been viewed as inferior, dangerous, tragic, pathetic and not quite human. Such are the negative presumptions held about impairment and disability, that the abortion of impaired foetuses is barely challenged (Parens and Asch, 2000a) and compulsory sterilization of people with learning difficulties was once widely practised in many parts of the world (Park and Radford, 1999). In 1986 Oliver wrote:

It has to be remembered however, that personal tragedy theory itself has performed a particular ideological function of its own. Like deficit theory as an explanation of poor educational achievement, like sickness as an explanation of criminal behaviour, like character weakness as an explanation of poverty and unemployment, and like other victim-blaming theories (Ryan, 1971), personal tragedy theory has served to individualise the problems of disability and hence to leave social and economic structures untouched. (1986: 16)

Affirmation is expressed through resilience and resistance to the dominant personal tragedy model.

There are dangers that we shall recognize here and return to in the conclusion to this chapter. The first is in relation to disability, or more particularly the social model of disability. The following statement from UPIAS, an organization of disabled people instrumental in establishing the social model of disability, addresses disability as political, a form of oppression.

We are oppressed by the society in which we live. How can there be ‘advantages’ out of this condition? It is true that all societies have hitherto oppressed their physically impaired citizens. Some will argue that this is intrinsic to physical impairment. We must insist, however, that the argument is about Britain today and that we are struggling against this oppression irrespective of whether it has always occurred. (1972: 7)

If there are no advantages in being disabled, then an affirmative model of disability seems at best questionable and at worst justifying the status quo.

The second danger is in relation to impairment. The social model of disability has been subjected to criticism on a number of grounds, which have planted the seeds of controversial and dynamic debates. As Oliver (2004) points out, the first of these is that the social model, supposedly, ignores personal experiences of impairment, such as physical pain. For instance, research with people with high spinal cord injuries found that the physical manifestations of their impairments were of central concern to the participants: ‘because sometimes you just can’t get out of bed: you may have a pressure sore or not be feeling well … it’s not as easy as an able-bodied person’ (Hammell, 1998: 76). Thus, on similar grounds, affirmation may be thought to be denial of the daily realities and experiences of being impaired, or as being brave in the face of tragedy. (Tragic But Brave was the title of an arts review organized and presented by disabled artists that toured the UK in the 1990s; a website; and a song – see pp. 73–74 below.)

A third possible line of critique focuses on the notion of identity. Basically, the affirmation of a disabled identity can be seen as, at the very least, over-simplistic and questionable in a number of ways (Ferguson, 2003). No disabled person is solely disabled: they are young, old, working-class, upper-class, male, female, gay, lesbian, heterosexual, Black, white, Asian, Christian, Muslim, atheist – and so on. The picture becomes complicated further if impairment is seen as an important factor defining identity: dividing people by type of impairment, age of onset, severity of impairment and so on. Critiquing the ‘identity model’, Fraser, for instance, could be writing about the affirmation of a disabled identity:

The overall effect is to impose a single, drastically simplified group-identity which denies the complexity of people’s lives, the multiplicity of their identifications and the crosspull of their various affiliations. (2000: 112)

In this chapter we explore these issues by focusing first on the general notion of identity and associated concepts of culture. We shall then turn specifically to the affirmation of disabled identity as both a personal and a political process which may be enacted and expressed in numerous ways. To conclude, we shall return to the lines of criticism outlined in this introduction.

Identity and culture: the personal and the political

Identity is the way people view themselves, how they view themselves in relation to others, and how they are viewed by others. It allows us to address seemingly straightforward questions: Who am I? and Who are you? As is typical in the social sciences, however, the seemingly simple becomes complex, with quite diverse viewpoints taken within different theoretical perspectives. Nevertheless, there are some key ideas within the umbrella notion of identity.

• It involves active engagement, individual and/or collectively, in the continual processes of identity formation and maintenance.
• In affirmation of identity the personal becomes social/political and the political becomes personal.
• Identity involves shared identification with some people and not others, through a myriad of social interactions, symbols and meanings.
• It also involves a tension between the control the individual has in constructing his or her identity and the social constraints limiting and determining identity formation.

Throughout this notion of identity then is a sense of ‘us’ and ‘them’. Identity and social division or difference are closely interconnected issues and have increasingly come to prominence in areas of inquiry across the social sciences (Hetherington, 1998). Our sense of who we are, our own identity in relation to (sometimes versus) the identity of others, are part and parcel of our lived experience and interwoven, and created within, our interactions with others. Our sense of who we are is linked, for instance, to our awareness of our identities as women or as men. Both gender and sexuality can play a significant role in our understanding of identity, but, of course, what it means to be a man or woman, heterosexual or gay also depends on the society we live in. Identity is at the interface between the personal, that is thoughts, feelings, personal histories, and the social, that is the societies in which we live and the social, cultural and economic factors which shape experience and make it possible for people to take up some identities and render others inaccessible or impossible (Woodward, 2000).

Politics of difference can divide society into opposing groups, into ‘them and us’ and ‘self and other’, and where there is difference there is the potential for institutionalized discrimination: that is the unfair or unequal treatment of individuals or groups which is built into institutional organizations, policies and practices at personal, environmental and structural levels. Thompson (2001: 140) suggests that forms of oppression can impact on identity in a number of ways:

• alienation, isolation and marginalization – social exclusion from full participation in society;
• economic position and life-chances;
• confidence, self-esteem and aspirations; and
• social aspirations, career opportunities and so on.

Turning to disabled people and the formation of disabled identity, clearly there are social, cultural and economic factors that can have an impact (Priestley, 2003). Exclusion, the denial of the rights and responsibilities of citizenship and oppression shape experiences, expectations and personal and collective identities in many ways. Young identifies women, gays and lesbians, indigenous populations and disabled people as ‘marginalized identities’. She argues, too, that marginalized groups ‘are not oppressed to the same extent or in the same ways’ (1990: 40). There are numerous specific examples of the oppression of disabled people in the chapters in Section I, particularly as manifestations of the personal tragedy model of disability.

It is only possible here to indicate some of the factors that may impinge on the identities of disabled people. Perhaps the most readily recognised are the barriers to access and participation. As Priestley states:

Barriers to participation in the socially valued labour of production and reproduction have denied many disabled people access to the social networks and citizenship rights upon which autonomous adult identities are premised. (2003: 192)

Another general factor is the dominant individual, particularly medical, model in defining disability and underpinning ostensible treatment and rehabilitation. For instance, the continuing perceived imperative for the prevention of impairment using antenatal screening and abortion and the development of genetic technologies for the eradication or ‘cure’ of impairments devalues disabled people and their lives. The accompanying debates are rarely informed by the voices of disabled people themselves, though the possible impact on disabled identities is clear.

The third general factor is the images of disability in the mass media – or, more generally, cultural texts. The impact of media on our constructions of selves and others’ identities can be profound and can lock people into ways of interacting which perpetuate the status quo and reinforce identities that individuals may not choose for themselves. As Gleeson (1999) suggests, the reductive stereotypes of disabled people – as dependent, abnormal (or freakish), helpless, or heroic and brave (in the face of tragedy) – limit the identities accessible to disabled people (including sexual, gendered and ethnic identities).

Affirmation: I am who I am

Within the confines of the social context, we actively and continuously negotiate who we are with those around us, in social interaction. It is fluid and changing. Concern about identity is concern about change: challenging social expectations about identity; establishing new identities; and transforming existing identities (Jenkins, 1996). This is collective as well as personal/individual. Since the 1950s ‘new social movements’, including the women’s movement, the Black Power movement and the disabled people’s movement, have played a significant role in the politics of identity. They can be seen as collective endeavours to give voice to and affirm new identities. It is apparent that the more overt the discrimination and oppression that people experience, the more heightened their awareness and sense of vulnerability will be around that particular identity. Monks states:

People who are socially excluded and oppressed, and who are often also defined as lacking qualities of a normative social being, may find solidarity in the shared experience of exclusion itself … The ‘communities’ which emerge may become politically active … Experience of the interdependence, mutuality and solidarity which arise from shared activities and communication is an important part of membership, even of direct political action. (1999: 71)

Similarly, Hetherington suggests that identity has become significant through resistance to dominance in unequal power relations:

One of the main issues behind this interest in identity and in identity politics more generally has been the relationship between marginalisation and a politics of resistance, and affirmative, empowering choices of identity and a politics of difference. (1998: 21)

Questions of identity, then, take analysis into the collective political arena. Jenkins writes of resistance as potent affirmation of group identity:

Struggles for a different allocation of resources and resistance to categorisation are one and the same thing … Whether or not there is an explicit call to arms in these terms, something that can be called self-assertion – or ‘human spirit’ – is at the core of resistance to domination … It is as intrinsic, and as necessary, to that social life as the socialising tyranny of categorisation. (1996: 175)

By moving to a position of viewing disability as both a personal and a public or political issue, the disabled person becomes empowered to confront the cultural stereotypes, discrimination and environmental barriers that undermine quality of life and identity (Swain and Cameron, 1999).

It is our contention that an affirmative model is developing out of individual and collective experiences of disabled people that directly confronts the personal tragedy model not only of disability but also of impairment. The notion of affirmation is one of great depth – taking us into what we are as human beings. From the documented viewpoint of disabled people, far from being tragic, being disabled can have benefits. There are numerous ways in which disabled people are affirmative that we can only touch upon.

1 Perhaps at the most basic level, impairment is simply a ‘fact of life’. A participant in Watson’s research typifies this:

Tommy argued that ‘I don’t wake up and look at my wheelchair and think “shit, I’ve got to spend another day in that”, I just get up and get on with it’. (2002: 519)

Kent writes:

I will always believe that blindness is a neutral trait, neither to be prized nor shunned. (2000: 62)

2 Affirmation can be of self, ‘I am what I am’, in direct opposition to the tragedy view of being disabled. The following quotation from Phillipe, a participant in a research project, turns the tragedy model on its head. The tragedy would be to be cured of impairment rather than being impaired:

I just can’t imagine becoming hearing, I’d need a psychiatrist, I’d need a speech therapist, I’d need some new friends, I’d lose all my old friends, I’d lose my job. I wouldn’t be here lecturing. It really hits hearing people that a deaf person doesn’t want to become hearing. I am what I am! (in Shakespeare et al., 1996: 184)

The next quotation is taken from the work of a disabled person produced in a workshop run by a disability arts organization. This poem is about the rejection of shame, or tragedy, to be countered by pride engendered by collective affirmation of disabled identity.

Sub Rosa
Fighting to establish self-respect…
Not the same, but different…
Not normal, but disabled…
Who wants to be normal anyway?
Not ashamed, with heads hanging,
Avoiding the constant gaze of those who assume
that sameness is something to be desired…
Nor victims
of other people’s lack of...

Table of contents

• Cover Page
• Title
• Copyright
• Contents
• Acknowledgements for Disability on Equal Terms
• Introduction
• Section I The Tragedy View of Impairment and Disability
• Section II From a Different Viewpoint
• Section III On Equal Terms
• Conclusion: Some Reflections on Key Questions
• References
• Index