

Young blind man takes part in a demonstration against a ban on street
commerce in Mexico City - Marco Antonio Cruz, 1993
INTRODUCTION
Within social theory, questions of disability identity bridge key contemporary
debates, including the structure/ agency problem and the biology/ society
dualism. It is my purpose to survey some of these issues and try to chart a way
through these dichotomies. Identity is a complex field, and social
psychologists, sociologists, political scientists, cultural critics and
philosophers all use the word variously and in different contexts. Furthermore,
the demands of a political movement and the development of social theory may run
in contradictory directions - one pragmatic and instrumental, the other more
concerned with complexity and nuance. Disability Studies prioritises
faithfulness to lived experience, certainly, but also internal coherence and
theoretical adequacy.
Initially, I want to foreground two specific uses of identity which illustrate a
significant tension in the disability debate. First, we can talk about
identifying as an active verb, as much as to say uncovering disabled people or
discovering disabled people. Second, we can use identity in a reflexive sense,
in terms of identifying oneself, which is about staking a claim to membership of
a collective or a wider group. Michel Foucault talks about these differences in
the concept of identity. He suggests we are made into subjects from above,
through surveillance and control operating through the state, through schools
and other agencies, and we make ourselves into subjects from below, where he
mainly talks about the processes of confession and communication, people
`speaking the truth about themselves'. I think this distinction is also what he
meant, from personal experience, when he argued `one should not be a homosexual,
but one who clings passionately to the idea of being gay' (quoted by Kritzman,
1988, xxiii).
This paper seeks to contextualise the social model within wider models of
disability, and to look at the identity options for disabled people. Parallels
are drawn with the experiences of women, lesbians and gays, and black people,
and post-structuralist concepts are used to problematise the issue of identity.
I suggest that recent political developments offer disabled people new
opportunities in how they identify. A useful metaphor is that of story telling:
identity is an aspect of the stories we tell to ourselves, and to others.
Sociology itself could be conceived in terms of form of story-telling. For
example, Ken Plummer's recent work uses the concept of story to explore the way
that people understand and represent their sexual experiences - for example, as
lesbians and gays `coming out' (Plummer, 1995). I suggest that similar processes
in self-understanding are going on in the field of disability identity.
Previously there was a limited range of narrative devices and themes available
to people with impairment: now, new stories are being told, and we are creating
ourselves for ourselves, rather than relying on the traditional narratives of
biomedical intervention or rehabilitation, of misery, decline and death. Doing
it for ourselves, perhaps we can reconcile tensions and produce alternative,
happier endings.
IDENTIFYING DISABLED PEOPLE
Let me distinguish two main approaches to identifying disabled people as a
group, one based in a physical or medical understanding, the other based in a
socio-cultural understanding: this may be simplistic, but I find the distinction
useful for heuristic purposes. I will then go on to subdivide the social
identifications further.
The first approach conceives of disability as the outcome of impairment: it is a
form of biological determinism, because it focuses on physical difference.
Disabled people are defined as that group of people whose bodies do not work; or
look different or act differently; or who cannot do productive work. The key
elements of this analysis are performing and conforming: both raise the question
of normality, because this approach assumes a certain standard from which
disabled people deviate.
Often, this approach does not identify `the disabled' as such, but focuses on
particular groups of people with impairment - for example `the blind' or
`epileptics'. Here we see a denial of the common social experiences which unite
disabled people, and a focus on medical dimensions of difference. It is as if we
did not speak of Black British people, but instead highlighted Bangladeshi,
Jamaican, Guyanese or Sri Lankan people in Britain. Obviously, there are times
when ethnic origin is important, but there is a danger of overlooking the
unities in the experience of Black British people, and also of essentialising
difference.
A wider problem, which is revealed in the confusions of quantitative social
research such as the 1988 OPCS Disability Surveys, or exhaustive categorisations
such as the International Classification of Impairments, Disabilities and
Handicaps, is that everyone is impaired (Sutherland, 1981). We are dealing with
an aspect of the human condition, not with the attribute of a specific and
identifiable minority. There are differences of degree, although it proves
contentious to draw a line, but these are not qualitative differences. If
everyone is impaired, we face difficulties if we seek to identify disabled
people on the basis that they experience particular physical deficits not shared
by the majority population. For example, recent Human Genome research has
highlighted the fact that everyone carries four or five recessive genes which
would cause genetic disease in an offspring, if the other parent was also a
carrier.
Furthermore, I believe that a situation where disabled people are defined by
their physicality can only be sustained in a situation where non-disabled people
have denied their own physicality (Shakespeare, 1994). If everyone is impaired,
then we should look at the ways in which a specific group in society, namely
non-disabled people, ignore their experience of impairment and physical
limitation. Perhaps the maintenance of a non-disabled identity in the context of
physical limitation is a more useful problem with which to be concerned: rather
than interrogating the other, let us rather deconstruct the
normality-which-is-to-be-assumed. This way of thinking about identity has
recently been usefully explored in the context of HIV/AIDS (Crawford, 1994).
Moving on to the second approach, disability has been conceived as an outcome of
social processes or as a constructed or created category. The social model
concept, arising from the social movement of disabled people, and developed by
Disability Studies sociologists is the classic example. But one of the points of
the current paper is to suggest that while this materialist approach is one
route to the social identification of disabled people, there are other fruitful
options.
Let me highlight five options for identifying disability as a social process:
1. The social model, which focuses on the disability as a relationship between
people with impairment and a discriminatory society: disability is defined as
the outcome of disabling barriers imposed by environmental or policy
interventions. It suggests a strategy of barrier removal, or education to remove
prejudice, with the goal of inclusion. Disabled people, in this approach, do not
want anything extra, but wish to be treated the same as non-disabled people. In
the social model, there is nothing to distinguish people with impairment who are
socially disabled, from people with dependent children who are socially disabled. A whole range of people may in
fact be disabled by barriers or prejudices.
2. The minority group approach, in which disabled people are an oppressed group.
This is a weaker claim than the social model, focusing on power politics and
identity politics, while not necessarily problematising disability itself. It
could be associated with North American disability movement approaches, and has
a general resonance within self-organised disability politics. That is, it often
co-exists with the first option, although I will argue that there are tensions
between a focus on removing disabling barriers, and opposing the oppression of
disabled people as a minority group. For example, a minority group approach may
advocate special measures, or a comprehensive disability income, or a bigger
share of social resources. In a pioneering, if ultimately unsatisfactory
analysis, Helen Liggett has highlighted the dangers of a minority group approach
which reinforces the constitution of disability (Liggett, 1988, p. 271).
3. A Weberian or Foucauldian approach in which disability is a category of
social policy. This is epitomised by the work of Deborah Stone (Stone, 1985). A
parallel could be drawn with Mary McIntosh's work locating the creation of a
homosexual role (McIntosh, 1968): in the same way, we could look at how the
development of industrial capitalism in the nineteenth century, through the 1834
Poor Law Amendment Act, set up a distinction between the deserving and the
undeserving poor which has influenced social policy up to the present day and
led to the identification of the disability category. As with other approaches,
this shifts the attention from the person with impairment to the statutory or
policy processes which construct him/ her as officially disabled. Robert Scott's
work, from a labelling perspective, could usefully be included under this
heading (Scott, 1969).
4. Disability as the outcome of definitions inherent in social research methods,
for example in the OPCS Disability Surveys. The work of Abberley (1992) and
others shows how survey instruments construct a category fairly arbitrarily,
resulting in the idea that there are approximately six million disabled people
in Britain. Methodological criticism of the type advanced by Kitsuse and
Cicourel (1963), or by Hindess (1973), illustrates the weaknesses of such
empiricism.
5. Disability as a cultural category. This approach, drawing upon the notion of
cultural representation, has precedents in the work of Sontag (1991), and is
also related to Foucault's concept of discursive formations. Elsewhere I have
looked at this in terms of prejudice, focusing on stereotypes, language and the
creation of meaning. Using the notion of otherness, I suggested that the processes of denial and projection are involved
in the cultural construction of disability (Shakespeare, 1994).
By offering a range of ways of understanding disability as a social
construction, I do not thereby intend to abandon the social model's stress on
material, environmental and policy factors. But rather than reducing the
category `disability' to a straightforward social relation, I think an analysis
of discursive practices offers a richer and more complex picture of disability.
It is in this sense, rather than the narrow phenomenological sense, that I would
say disability is socially constructed, and would highlight the benefits of a
Foucauldian analysis, regarding disability as a process of subjection.
Ian Hacking has developed an interesting account of what he calls `making up
people' which draws upon McIntosh's `homosexual role hypothesis' and has
relevance to my argument here. Thus he describes as `dynamic nominalism' the
suggestion that:
`numerous kinds of human beings and human acts come into being hand in hand with
our invention of the categories labelling them' (Hacking, 1986, p. 236).
This casts light on the various forms of social construction of disability
outlined above. To me, this also indicates that we would be right to see recent
disability politics as opening up new narrative possibilities for individual
identity, which may have been unavailable before. As Hacking argues:
`Making up people changes the space of possibilities for personhood' (Hacking,
1986, p. 229).
Below I will consider some of these developments.
DISABLED PEOPLE IDENTIFYING
Medical approaches consider negative self identity to be an outcome of physical
impairment, and focus on the need for adjustment, mourning, and coming to terms
with loss. Social approaches view negative self-identity as a result of the
experience of oppressive social relations, and focus attention on the
possibilities for changing society, empowering disabled people, and promoting a
different self-understanding.
A particularly useful metaphor for understanding both approaches is provided by
the concept of identity as narrative, which focuses on the stories we tell about
ourselves and our lives, and constructs accounts which encompass plot, causality
and conflict. This offers the potential for a nuanced model of identity which
resists the temptation straightforwardly to read off identity from context, or
indeed embodiment. Giddens summarises this approach to self-identity:
`Self-identity is not a distinctive trait, or even a collection of traits,
possessed by the individual. It is the self as reflexively understood by the
person in terms of her or his biography' (Giddens, 1991, p.53).
Identity therefore connects the social and the personal and involves the
individual putting themselves in a collective context. `A person's identity is
not to be found in behaviour nor - important though this is - in the reaction of
others, but in the capacity to keep a particular narrative going' (Giddens,
1991, p.54).
Jeffrey Weeks has suggested, in the context of gay liberation, that the concept
of identity is like finding a map to explore a new country (Weeks, 1977). Both
these metaphors connect with the idea of representation, of giving meaning, or
of charting a way through, spatially or temporally. They also highlight the
importance of identity for political developments: positive identity narratives
are reinforced by self-organisation, and are a condition for it.
The experience of disability as a negative identity arises out of a process of
socialisation, or in the context of social relations, in which impairment is the
sole focus of analysis. Grief and loss are turned inwards, and suffering focuses
on the self. In the absence of other socially sanctioned identities, the
professional cripple role enables successful interaction with professionals,
offering the benefits of sympathy and concern on the part of others. It could be
conceived in terms of a tendency to `blame the victim', to convert public issues
in personal woes. As an individualised experience, the structural and cultural
context is not challenged, and alternatives to the dominant biomedical paradigm
are not available. Difference is either fetishised, as medical tragedy, or
ignored. Assimilation is the name of the game.
The person with impairment may have an investment in their own incapacity,
because it can become the rationale for their own failure. The legitimation
accorded them by non-disabled people is predicated on accepting responsibility
for their own incapacity, and not challenging the dominant order. Indeed, they may become token examples of the tragedy of disability,
involved in consultations or wheeled out to highlight the problems.
Alternatively, various forms of denial may be involved, where a person claims to
be `really normal' and tries to minimise the importance of impairment in their
lives, perhaps by concealment: in Goffman's (1968) terms, they may pass as
normal. As he highlighted, this involves considerable tensions and difficulties
of managing information or interaction. Other similar strategies may include
religious identification with suffering - a resignation to fate or the will of
God. Such quietist acceptance involves enduring the difficulties of impairment,
possible in the expectation of heavenly compensation. Finally, another form of
denial seeks to `overcome' impairment. Often a strategy associated with
masculine expectations, it involves a refusal to submit to reality, and an
attempt to regain a normal identity through superhuman activity and endurance,
for example in the case of many sporting activities.
While these various alternatives all demonstrate the use of narratives of self,
I would argue that none are psychologically or socially healthy or progressive.
They all involve an element of denial or failure to come to terms: they all
involve a significant element of external definition, of accepting external
disempowering agendas. A temporary or compromise identity may be developed, but
it is frail, and ultimately has costs for personal psychological happiness and
security. By focusing on the body and the individual, the disabled person is
trapped in a prison not of their own devising, and cannot escape except through
strategies which are ultimately self-defeating.
Disability as a positive identity is a process, to use Foucauldian language,
where subjection opens up the possibility of subjectification:
`From popular culture to government policy, society has evidently assigned you a
membership. Identity politics turns necessity to virtue' (Girlin, 1994, p.153).
This alternative to the negative identification with impairment is provided by
those who resist the negative implications of the medical model and develop a
response which focuses on the exclusion and injustice which characterises
disability. This shift often takes the form of replacing one analytical
framework (the `medical model') with another (the `social model') to lead to a
more positive identity, often described as `coming out'. This `coming out' is
the process of positive self-identification, rejecting the categorisation of
subjection, and affirming subjectivity and collective power. It is about
developing new definitions and new political forms. Frances Hasler (1993)
describes it as the `big idea' which underpinned the self-organised disabled
people's movement in Britain.
While this can be a private and individual development or personal awakening, it
is more likely to take place in a collective context: self-organisation itself
prompts the process of identification. Even segregated institutions, such as the
Le Court Cheshire home where Paul Hunt lived, can enable disabled activists to
foster a response to exclusion (Hunt, 1966). Jeffrey Weeks focuses on this
feeling of shared identity:
`Identity is about belonging, about what you have in common with some other
people and what differentiates you from others. At its most basic, it gives you
a sense of personal location, the stable core to your individuality' (Weeks,
1990, p. 88).
Elsewhere I have discussed the relationship between self-organisation and the
development of disability as a political identity, and developed comparisons
with the women's movement and the civil rights movement (Shakespeare, 1993).
Critically, both self-organisation and direct action are processes with
implications for identity, as well as instrumental goals: to quote a social
theorist,
`The actors mobilise to regain control of their own action. They try to reclaim
the right to define themselves against the criteria of identification determined
by an anonymous power and systems of regulation that penetrate the area of
"internal nature" ' (Melucci, 1989, p.61).
The disability movement provides the collective context for political
identification; it involves processes which challenge views of disabled people
as incapable, powerless and passive; and it establishes disabled people as the
experts on disability and disabled people's definitions as the most appropriate
approaches to disability, rather than the traditional domination of
professionals.
`The move towards self-organisation has prompted increasing numbers of disabled
people to adopt a shared political identity which in turn has helped to build a
new mood of confidence. Disabled people no longer ask for change, but demand it.
They are prepared to use a whole range of tactics in pursuit of their demands,
including direct action and civil disobedience' (Bynoe, Barnes and Oliver, 1991,
p. 12).
Alongside political activism, cultural forms of self-provision, otherwise known
as disability arts, develop a sense of shared cultural identity which is central
to these processes:
`Disability arts also provides a context in which disabled people can get
together, enjoy themselves and think in some way about issues of common concern.
But it goes deeper than that, as disability culture really does offer people a
key to the basic process of identifying as a disabled person, because culture
and identity are closely linked concepts. Simply naming the idea I think has
encouraged a lot of disabled people to happily call themselves so and to be more
up front and confident about themselves and that is also giving more confidence
to the movement as a whole' (Sian Vasey, quoted in Lees, ed., 1992, p. 13).
Challenging stereotypes, building solidarity, recounting new stories, are all
about developing a disability culture. These processes are also about new
options for disability identity:
`To encourage the growth of a disability culture is no less than to begin the
radical task of transforming ourselves from passive and dependent beings into
active and creative agents for social change' (Morrison and Finkelstein, in
Lees, ed., 1992, p.22).
I hope it has been demonstrated that the three aspects of disability identity
-political, cultural and personal - are linked. By offering potential for
subjectivity, for a changed self-understanding and an increased sense of
personal power, self-organisation offers a way out of the traps of negative
identification. From self-blame, one is enabled to blame exclusionary social
processes; rather than explaining one's situation in terms of personal failure,
one can justify one's identity on the basis of discrimination and prejudice.
This is about embracing identity and coming to terms with one's political status
in the world. What is more, it is about opening up the possibility of changing
one's world.
Although I have implied that the process of positive identification is
straightforward and simple, I would argue it is difficult and complex. Below, I
will highlight particular issues, but here I want to suggest that positive
identification should be seen as a project, rather than a once-for-all
definition or event, a project based on self-recognition and recognition by
others. Calhoun argues that the politics of personal identity and the politics
of collective identity are inextricably linked:
`Identities are often personal and political projects in which we participate,
empowered to a greater or lesser extent by resources of experience and ability,
culture and social organisation' (Calhoun, 1990, p. 28).
Sometimes a focus on political campaigning and political change can mask an
equally urgent need to work on psychological obstacles to feeling empowered and
effective. Surviving oppression can leave a legacy of distress and difficulty,
and those who appear most strident and strong in the political arena can carry a
burden of self-hatred and internalised oppression which makes psycho-social
fulfilment precarious and problematic. There is a parallel with the arguments of
the French psychoanalytical feminist group Psych et Po, who referred to the
futility of activism without awareness of internal conflict as the danger of the
`phallus inside one's head' (Duchen, 1987, p.47ff). While Disability Studies has
presented a dichotomy between the medical model and the social model, few have
raised the issue of individual psychology: I would suggest that both object
relations and psychoanalytical approaches offer potential benefits for those
exploring disabled people's experiences, and that such analyses are long
overdue.
IDENTITY PROBLEMS
Rather than propose a simple and triumphalist model of identity formation, I
want to suggest there are major obstacles to developing a positive and strong
disabled identity. It would not be accurate to trace a neat trajectory between
being constructed as a category of otherness, and then being able to use this as
a source of strength. There is nothing inevitable or determined about the
process, and there are major difficulties with successfully and positively
identifying as disabled. As Weeks says in the context of sexuality:
`Oppression does not produce an automatic response, but it does provide the
conditions with which the oppressed can begin to develop their own consciousness
and identity' (Weeks, 1977, p.33).
First, disabled people are socialised to think of ourselves as inferior. Within
dominant discourses of subjection, as I have outlined earlier, strong messages
of physical difference and personal deficit are reinforced:
`The messages we receive are very strong and clear and we have little access to
different values which may place a more positive value on our bodies, ourselves
and our lives. Our self image is thus dominated by the non-disabled world's
reaction to us' (Morris, 1991, p.28).
People are socialised into thinking of disability in a medical model way. We can
view this as internalised oppression. Paolo Freire analyses this:
`Self-depreciation is another characteristic of the oppressed, which derives
from their internalisation of the opinion the oppressors hold of them. So often
do they hear that they are good for nothing, know nothing, and are incapable of
learning anything - that they are sick, lazy and unproductive - that in the end
they become convinced of their own unfitness' (Freire, 1972, p.38).
In the case of disabled people, this is reinforced by segregated education,
negative images, cultural representation, absence of positive role models,
social treatment of disabled people. It parallels the experience of women in
patriarchal societies. We could develop a distinction between people born with
impairment, who have no alternative to viewing themselves as deficient, and
people becoming impaired, who have to relinquish a non-disabled identity and
accept an identity as other. Similarly, ` "Becoming a homosexual"; is a
difficult process of "becoming the other"; or "becoming what one has learned to
despise"; As such it is an individual and privatised process, the "intolerable
reality", being a confrontation with oneself rather than being an open struggle
with an easily located oppressor' (Gay Left Collective, 1980, p.80).
Coming out is difficult and precarious for both groups. Second, disabled people are isolated and separated from one another, and from
sources of collective support and strength.
`One of the most important features of our experience of prejudice is that we
generally experience it as isolated individuals. Many of us spend most of our
lives in the company of non-disabled people, whether in our families, with
friends, in the workplace, at school and so on. Most of the people we have
dealings with, including our most intimate relationships, are not like us. It is
therefore very difficult for us to recognise and challenge the values and
judgements that are applied to us and our lives. Our ideas about disability and
about ourselves are generally formed by those who are not disabled' (Morris,
1991, p.37).
While women and black people can expect support role-models from within the
family and community, disabled people are likely to grow up in families where
there are not other disabled people, and where there is a parental
burden of guilt and shame. This highlights a difference between disability, and
race and gender, disability is more like sexuality, in the sense of familial
isolation, and the need to come out and reject the burden of difference. No
discussion of the obstacles to identifying as disabled would be complete if it
did not raise questions about the different resources, narratives and
possibilities available to different groups of disabled people, whether based on
age, impairment or other social distinctions. At this stage I will turn to some
of these questions.
Having presented a fairly schematic model of disability identity, I want to
focus on tensions and difficulties in the concept. Some of this lies in the
division between the needs of a social movement, which often deals in simple
dichotomies, and produces polemical arguments, and an academic approach, which
has a responsibility to be rigorous, which is more focused on nuance and
contradiction, and which, in the current era especially, often justifies its
existence in terms of deconstruction and elaboration. However, I think the
issues I will highlight all have major political connections, and are not merely
problems of theory or the ivory tower. What is more they are linked, and they
link disability identity into wider social theoretical debates with which
disabled people, and Disability Studies in particular, have to engage.
Jenny Morris, and other disabled feminists have highlighted difficulties in
reconciling the reality of impairment and the lived experience of disability
with the sometimes social reductionist social model. Given the other debates
consecutive with this paper, I will not engage deeply with these issues. But
certainly, the fact that people with impairments associated with ageing are not
fully represented within the disability movement points to an issue of identity
and identification. For example, looking at Jenny Morris's two most recent books
on disability, the interviewees are all under the age of sixty, while the
majority of disabled people are over the age of sixty. Some impairments - the
congenital impairments for example, or those associated with accident or with
early onset - are more likely than others to lead to individual identifying
collectively and socially as disabled.
Traditional approaches to disability, highlighted above, could be considered to
be essentialist. Differences, biological and sometimes psychological, separate
disabled people from non-disabled people. Social approaches counter this
essentialism by demonstrating how it is exclusionary policies, environmental
barriers and a process of social oppression which create the category of
disability. This is a social constructionist analysis. For example, it is
suggested that the experience of disability varies at different times and in
different cultural contexts. Political strategies focus on barrier removal. But between and within this dichotomy of essentialism and social constructionism
there are debates which have been explored by feminists and queer theorists, and
still await Disability Studies.
For example, despite the seeming social constructionism, there is an inherent
essentialism within disability politics, and indeed in the idea of disability
identity. The celebration of disability pride is the celebration of difference,
and the acceptance of difference: it is about subverting negative valuation and
reclaiming disability. Nietzsche suggests:
`A species comes to be, at type becomes fixed, in the long fight against
essentially constant adverse conditions' (Nietzsche, 1990, p.199).
This means that what does not kill you, makes you strong. It also means,
accepting a category created by others, revelling in abnormality, celebrating
the margins. While the social model is social constructionist, the social
oppression model can slide into essentialism. While the disability movement
seeks inclusion and integration, it also celebrates difference. The margins are
a good place to speak from, and there is a cost to coming into the mainstream.
But celebrating and identifying in difference can be risky - for example,
recuperating the term `cripple':
`The dangerous intimacy between subjectification and subjection needs careful
calibration' (Riley, 1988, p.17).
The work of Helen Liggett (1988) shows the risks of reinforcing the
categorisation of disabled people as a separate group. I think there is a
tension in the essentialism within the disability movement and disability
studies, and it is one that parallels difficulties experienced within other
identity politics: for example, problems for gay and lesbian and feminist theory
and politics. Todd Girlin suggests:
`For all the talk about the social construction of knowledge, identity politics
de facto seems to slide towards the premise that social groups have essential
identities' (Girlin, 1994, p.153]. This may be an example of the opposed
priorities of theory and practice. As I have suggested, theoretical
sophistication may not be appropriate to the needs of social movements:
`Post-structuralism's attack on essentialism and the "decentering of the
subject" came into conflict with thinking and practice rooted in the standpoint
of women or the experience of gays' (Calhoun, 1990, p.15).
In practice, social constructionism may not be as politically effective as
essentialism, due to a lack of rhetorical power. Some have asked why they should
deconstruct their own identities when the oppressors identities are still so
strong, and questioned what social constructionism can offer them: `Social constructionism was an ambiguous ally in the attempt to oppose the
devaluing of various identities' (Calhoun, 1990, p.16).
There are also contradictions internal to the political strategies, for example
with the clash between the social model and the minority group notions of
disability. While they are often conflated, I would argue that there are
differences, and looking at the difference between British and international
disability politics indicates some of these. There are in fact two,
contradictory goals of disability politics: firstly, demolish the processes
which disable; second defend disabled people. Carol Vance (1989) suggests that
the lesbian and gay movement faces a parallel dilemma. Lesbian and gay
historians have attempted to trace a history of lesbian and gay people, while
social constructionist theorists have shown that there is no continuity, and
that same sex activity has different meanings in different times and places. As
historians begin to reconstruct the disability experience, I believe they will
face similar difficulties. It is only in the late twentieth century that
gayness, or disability, have been celebrated with pride.
Denise Riley has taken a similar approach to the history of the category
`woman', seemingly an essential identity, but in fact just as socially
constructed as sexuality. It is a problem for feminist politics which she
confronts, not just for historians: from a post-structuralist perspective, she
does not have much faith in the coherence of identities:
`The impermanence of collective identities in general is a pressing problem for
any emancipatory movement which launches itself on the appeal to solidarity, to
the common cause of a new group being, or an ignored group identity' (Riley,
1988, p. 16).
Another example of the way these debates are relevant to disability is the
debate about the role of identity after the dissolution of disabling barriers.
If there are benefits to disability identity, if it is a source of strength and
pride, will it persist in the utopian world where there are not barriers or
oppressive processes? Is there a difference beyond oppression? Is there
something about having an impairment, as opposed to being disabled, which will
persist and will unite disabled people? There may be major differences here
between disability, and race/ gender/ sexuality.
Crude dichotomies between social constructionism and essentialism are perhaps
not particularly helpful, as Diana Fuss (1989) argues. Social constructionism
can itself be quite determinist and fixed. At other times, in the rejection of
biological thinking as essentialist, it can become idealist and totally
decentred. Judith Butler (1990) has explored the essentialism inherent in social
constructionist positions in gender, and the danger of reifying the subject.
While feminists have attacked Foucault for seemingly writing out the
possibilities of resistance, she develops a complex analysis which nevertheless
offers some benefits to those exploring identity politics. For her, the subject
is discursively constituted, but agency is possible. She describes identities as
self-representations, as "fictions" that are neither fixed not stable. For
example, in her view, gender centres on performativity, and she is especially
interested in the marginal and transgressive actors who create themselves.
Personally, I find Butler's work opaque and difficult, but I am certain it could
be useful in developing beyond some of the paradoxes of disability identity
(Sawicki, 1994, is a good starting point for these debates).
Let me now consider more closely this issue of difference. One of the dangers of
the essentialism highlighted above, is that it provides a simplistic
reductionism, an `us and them' approach. While this is comforting and secure, it
offers risks. As an example, I would suggest an article by disability activist
Alan Holdsworth, in which he developed a polemic about allies and oppressors,
dividing the non-disabled world into professional oppressors, liberal oppressors
and allies (Holdsworth, 1993). In my view, this was unhelpful, because it
reduced political agency and identity to a unilinear choice. Disabled people, by
virtue of having experienced disablement, were good, and non-disabled people
could only be counted as good in very specific circumstances. Now, as I have
tried to outline above, it is clear that many people with impairment do not
identify as disabled. Some have even been viewed as traitors to the disability
community, as selling out, as tokens. For example, Bert Massie, director of
RADAR, faces much opposition. So clearly not all disabled people are allies.
However, my main problem with the analysis was that it ignored the multiple
identities and identity choices which people make in practice. For example,
there is a danger of ignoring the fact that disabled people are also men and
women, straight and gay, and come from various ethnic groups. Just as white
feminists were accused by black women of ignoring the specificities of black
women's experience, and even of being racist, so disabled people risk ignoring
difference. It may be that black disabled people sometimes have more in common
with black people than with disabled people. Sometimes the values of the
disability movement - for example, autonomy, independence, choices and rights - may in fact be specifically white, western values. Perhaps
an eastern or Islamic approach would want to stress family, and solidarity, and
mutuality rather than what sometimes seems a very individualistic model of
liberation.
Class is a particularly powerful determinant of the disability experience. It
qualifies and changes the consequences of impairment, and reduces the exposure
to oppressive social relations. My class and gender are better predictors of my
career pattern and income than my impairment. Other people with achondroplasia
would experience their disablement very differently, for example, if they had
the educational opportunities which were presented to me. Often in identity
politics the issue of class is obscured: both the women's movement and the gay
movement have faced criticism for being too middle-class dominated, too
concerned with middle-class experiences, not sufficiently attuned to the
problems of poverty and exclusion. While I am not arguing that this is
necessarily true of the disability movement as a whole, it is true of some in
the disability movement.
Now, this is not to deny that disability is a very powerful identity, and one
that has the potential to transcend other identities. I think very often it is a
master/ mistress status. For example, it has the power to de-sex people, so that
people are viewed as disabled, not as men or women, straight or gay. Also, I am
aware that, for example, the disability movement is more open to lesbian and gay
disabled people than the lesbian and gay community is open to disabled people
(Shakespeare, forthcoming). But having said that, I still think it is dangerous
to overlook multiple identities, and to assume that disability is the sole and
significant identity.
For example, it may be necessary to move away from the unitary, essentialist
disability identity and think of a variety of disability identities. Just as
feminists suggested that being a black woman should not be conceived of
additively, but was qualitatively a different and separate thing, so it may be
for black disabled people. As Ossie Stuart suggests:
`The oppression that black disabled people endure is... unique... it is
necessary to construct a distinct and separate black disabled identity' (Stuart,
1992, p. 94).
Thus he rejects the notion of double oppression, and instead talks of
simultaneous oppression, something qualitatively different. Mark Priestley's
excellent research with blind Asian people in Leeds has reinforced the need for
such developments (Priestley, 1995).
Post-structuralist approaches to identity have built on this notion of
difference, and the rejection of essentialism. They suggest we need a more
complex, more contingent and more subtle understanding of the workings of power.
Additionally, and vitally, we must be able to have `simultaneously an account of
radical historical contingency for all knowledge claims and knowing subjects'
and `a no-nonsense commitment to faithful accounts of a "real" world' (Haraway,
1988, p.579).
This tightrope act contextualises my own commitment to disabled people's
stories. It is for reasons such as these that Disability Studies may find
post-structuralist theory useful, although the political demands of the
disability movement may not allow space for seemingly irrelevant diversions.
CONCLUSION
Currently, I am engaged in researching the things that disabled people say about
their sexual selves. In trying to construct a sexual politics of disability, I
am interested in disabled people's ideas of identity - in terms of masculinity
or femininity, being straight or gay (Shakespeare, forthcoming). I think that
identity politics is both about achieving a better deal for people, but also
about establishing the stories people tell about themselves, and having them
listened to. A theme of this paper has been the new narratives which disability
identity offers people with impairment, and an openness to the varieties,
variations and differences which are available. In this sense, the theoretical
complexities I have outlined have their correlation in the richness of disabled
people's own stories.
Ken Plummer's book draws on literary analysis which suggests there are only five
basic narratives to modern stories (Plummer, 1995, p.54). For example: the
journey (a progression through stages); enduring suffering; engaging in a
contest (a struggle with antagonists); pursuing consummation (achieving a goal
of fulfilment); establishing a home (for example, finding a community or
identity). I think these five patterns are evidenced in the identity narratives
of contemporary disabled people and influence the tales we tell about ourselves.
Furthermore, he suggests stories require audiences:
`Stories need communities to be heard, but communities themselves are also built
through story tellings. Stories gather people around them: they have to attract
audiences, and these audiences may then start to build a common perception, a
common language, a commonality' (Plummer, 1995, p.174).
This highlights the vital importance of community and movement to disability
identity, and the symbiotic relationship between individual and collective. The
process of political mobilisation, the process of cultural expression, and the
process of academic investigation and theorisation are equally vital to that
community. Fundamental is the process of listening, which requires openness and
respect.
Disability identity is about stories, having the space to tell them, and an
audience which will listen. It is also about recognising differences, and
isolating the significant attributes and experiences which constitute
disability. Some we might choose to change, others to recuperate or celebrate.
We may need to develop a nuanced attitude which incorporates ambivalence:
towards our bodies, for example. Theory has a part to play in this process. But
(metaphorically, if not physiologically), it all starts with having a voice. As
Foucault suggests, our task is to speak the truth about ourselves.
REFERENCES
-
ABBERLEY, P. (1992) `Counting us out : a discussion of the OPCS disability
surveys', Disability, Handicap and Society, 2, 1, pp 5-21.
-
BUTLER, J. (1990)
Gender Trouble, London: Routledge.
-
BYNOE, I., BARNES, C. and OLIVER, M. (1991) Equal rights for Disabled People,
London: IPPR.
-
CALHOUN, C. (1990) Social Theory and the Politics of Identity, Cambridge,
Massachusetts: Blackwell.
-
CRAWFORD, R. (1994) `The boundaries of the self and the unhealthy other:
reflections on health, culture and AIDS', Social Science and Medicine, 38, 10,
pp. 1347-1365.
-
DUCHEN, C. (1987) French Connections, London: Hutchinson
-
FRIERE, P. (1972) Pedagogy of the Oppressed, Harmondsworth: Penguin.
-
FUSS, D. (1989) Essentially Speaking, London: Routledge.
-
GAY LEFT COLLECTIVE (1980) Homosexuality: power and politics, London: Allison
and Bushy: GIDDENS, A (1991) Modernity and Self-Identity, Cambridge: Polity.
-
GIRLIN, T. (1994) `From universality to difference', in Calhoun, C., (ed.),
Social Theory and the Politics of Identity, Cambridge, Massachusetts: Blackwell.
-
GOFFMAN, E. (1968) Stigma, Harmondsworth: Penguin.
-
HACKING, I. (1986) `Making up people' in Helier, T.C. et al, Reconstructing
Individualism, Stanford: Stanford University Press, pp. 222-236.
-
HARAWAY, D. (1988) `Situated knowledges: the science question in feminism and
the privilege of partial perspective', Feminist Studies, 14, 3, pp. 575-599.
-
HASLER, F. (1993) `Developments in the disabled people's movement', in Swain, J.
et al., (eds.) Disabling Barriers, Enabling Environments, London: Sage.
-
HINDESS,
B. (1973) The Use of Official Statistics in Sociology, London & Basingstoke:
Macmillan.
-
HOLDSWORTH, A. (1993) `Our allies within', Coalition, June, pp. 4-10.
HUNT, P. (1966) Stigma, London:Geoffrey Chapman.
-
KITSUSE, J.I. and CICOUREL,
A.V. (1963) `A note on the use of official statistics', Social Problems, 11, 2,
pp. 131-9.
-
KRITZMANN, L, (ed.) (1988) Politics, Philosophy, Culture, NY and
London: Routledge. LEES, S. (ed.) (1992) Disability Arts and Culture Papers,
London: SHAPE Publications.
-
LIGGETT, H. (1988) `Stars are not born: an
interpretative approach to the politics of disability', Disability, Handicap and
Society, 3, 3, pp. 263-276.
-
McINTOSH, M. (1968) `The Homosexual Role', Social
Problems, 16, 2, pp. 182-91. MELUCCI, A. (1989) Nomads of the Present, London:
Radius.
-
MORRIS, J. (1991) Pride Against Prejudice, London: Women's Press.
-
NIETZSCHE, F.W. (1990) Beyond Good and Evil, Harmondsworth: Penguin.
-
PLUMMER,
K.(1995) Telling Sexual Stories, London: Routledge.
-
PRIESTLEY, M. (1995)
`Commonality and difference in the movement: an association of blind Asians in
Leeds', Disability and Society, 10, 2, pp. 157- 70.
-
RILEY, D. (1988) Am I That
Name?, Basingstoke: Macmillan.
-
SAWICKI, J. (1994) `Foucault, feminism, and
questions of identity', in Gutting, G. (ed.) Cambridge Companion to Foucault,
Cambridge: Cambridge University Press.
-
SCOTT, R.A. (1969) The Making of Blind
Men, New York: Russell Sage Foundation.
-
SHAKESPEARE, T.W. (1993) `Disabled
people's self-organisation: a new social movement?', Disability, Handicap and
Society, 8, 3, pp. 249-264.
-
SHAKESPEARE, T.W. (1994) `Cultural representation of
disabled people: dustbins for disavowal?', Disability and Society, 9, 3, pp.
283-299.
-
SHAKESPEARE, T.W. (1996) `Power and prejudice: issues of gender,
sexuality and disability', in Barton, L. (ed.) Disability and Society: Some
Emerging Issues, Harlow: Longman.
-
SONTAG, S. (1991) Illness as Metaphor/AIDS and
its Metaphors, London: Pelican. STONE, D. (1985) The Disabled State,
Basingstoke: Macmillan.
-
STUART, O. (1992) `Race and disability; just a double
oppression?', Disability, Handicap and Society, 7, 2, pp 177-188.
-
SUTHERLAND, A.T. (1981) Disabled We Stand, London: Souvenir Press. VANCE. C.
(1989) `Social construction theory; problems in the history of sexuality', in
Altman, D. et al., (eds.) Homosexuality, Which Homosexuality?, London: Gay Men's
Press.
-
WEEKS, J. (1977) Coming Out, London: Quartet Books.
-
WEEKS, J. (1990) `The
value of difference', in Rutherford, J. (ed.) Identity: Community, Culture,
Difference, London: Lawrence & Wishart.
ϟ
DISABILITY, IDENTITY AND DIFFERENCE
-Chapter 6- in
'Exploring the Divide'
author: Tom Shakespeare
University of East Anglia
1996
Edited by Colin Barnes and Geof Mercer, 1996
Leeds: The Disability Press, pp. 94 – 113.
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