Researching the disabled identity: contextualising the identity transformations which accompany the onset of impairment

Following on from the statistic that Siebers revealed in his essay, that only 15% of disabled persons are born with their disability, I located this article by Rose Galvin, which looks at some of the transformations that take place in people who develop their disabilities later in life. In an exploration of the development of identity, Galvin sets out to explore how people redefine their definitions of self following an ‘epiphanic experience’ (other euphemisms used include ‘biographical disruption’, or ‘loss of self’), where the individual is forced to shift from one social world to another: the phenomenon of the disabled identity providing an insight into the normative notions of self that are usually taken for granted. Her idea is that by revealing the nature of normative values, the tools for challenging them can be affirmed, since oppression is resisted by people “…identifying themselves as subjects, by defining their reality, shaping their new identity, naming their history, telling their story.” (quoting bell hooks)

Overall, from the data that was collected three core categories were revealed to reflect the key areas of identity transformation – independence, work and sexuality/appearance. Most importantly, all the subjects noted a marked change in people’s behaviour and attitudes towards them once their impairment became visible, and this came to influence greatly how the subjects began to see themselves.

“Shame is the recognition of the fact that I am the object the Other is looking at and judging” (Jean-Paul Sartre, Being and Nothingness, 1943).

Negative self perceptions among the subjects were contributed to by the various treatment they received at the hands of others: “...being patronised or pitied, singled out for unsolicited attention or treated as invisible, being stared at or reviled” (p 397). Being treated as a non-entity outside or beyond the disability, thinking that the disability is all that the Other sees (in the shape of physical difference or paraphernalia such as wheelchair or crutches); the identity becomes rooted in the disability, engulfed, fixed, unchangeable. The disability becomes the primary mode of identification. The subjects spoke of rejection, of disgust, of patronisation, of people not knowing how to deal with disability due to “…a kind of half superstitious, half long-forgotten thing which rises up in people that the person who is unusual or different is somehow a freak.” Others still spoke of their relative invisibility, of how colleagues and friends ceased to recognise or even notice the person concerned: “People with whom I had worked for many years and men and women with whom I had been friends for decades would pass by my wheelchair and not notice who I was. I would look them directly in the face, but they would quickly avert their eyes, gazing at a space about two feet above my head.” I think that this is one of the major barriers to any real progress being made in changing attitudes towards disability – the fear or inadequacy in society, not knowing how to respond appropriately to the disabled person. In my experience, the more natural and casual you are with disabled persons, the better you are received. Once again, it comes to going beyond appearances and getting to know the person, not being put off by the disability; remember: ‘terrible treatment’ for disabled persons also comes in the form of overbearing patronisation or concern. The major goal of this project is to show disabled persons as people foremost.

This diminished sense of self that is experienced by disabled persons (particularly those who became disabled later in life) is thus a reaction to negative treatment by others as well as one’s own preconceived ideas about disability. This oppression is then internalised as feelings of inadequacy, self-doubt, worthlessness and inferiority, becoming in effect constructed barriers to experiencing a ‘full life’. If the oppression is primarily attitudinal, any steps taken towards changing such attitudes will begin to help breaking down the barriers to disabled persons engaging in and being acknowledged as members of society. In the view of one of Galvin’s subjects: “You go from feeling marginalised because there is something wrong with you to recognising that it’s society and social views that are the problem. You stop hating yourself and start to challenge society. But rather than demanding more ramps or better job opportunities, although they can certainly open the way for a better self-esteem as well, you demand to be seen as a worthwhile human being whose impairment is only one small part of who we are.” In this section, Galvin also noted the keen sense of humour that many subjects had developed in relation to their situations, not wishing to dwell in the negative aspects and as a form of resistance. This is something that I have also experienced, and once formalities are done with, I try to connect with my subjects through humour, and it seems to work (for the most part with the subjects themselves, with the parents I am a lot more careful with my use of humour).

Galvin then looks at the three major impact areas one at a time. I will look at them as well, since they inform the areas I will focus on in my project work.

Loss of independence = increased dependence on others was the primary area of identity loss for the individuals in Galvin’s studies. This is probably because of where the study took place (relatively wealthy, developed Anglo-Saxon societies) and the consequent societal norms. Bearing in mind the influence of globalisation and capitalist work ethic on societies worldwide, we can assume that the trends documented here may not yet be true for some more familial or communal groups in less wealthy nations where individualism and independence do not take priority over the common good. It has been noted that shame and frustration (the issue of becoming a burden for loved ones or on society in general) have been cited as reasons for legalised euthanasia in some states. The identity of the dependant becomes contaminated with this unequal or lopsided social relationship. In my experience, the subjects I have been working with are all strong-willed and have the determination not to give in, but as this article points out, this may also be the result of shame and reluctance to ask for help. One of the subjects interviewed said the following: “Needing so much help all the time, not being able to choose or do things for yourself, it makes you feel ashamed. I don’t ask for anything if I can help it.” While others spoke of the demoralising and degrading feelings associated with asking for help, preferring to crawl on their hands and knees or not getting out of bed for shame.

In societies where the ability to be self-reliant is glorified and the public sector is shrinking in the face of economic rationalism, disability is more and more being seen as something that needs to be addressed by individuals and their families as opposed to the state. In this regard, some theorists are now questioning the mythic notion that anyone is actually independent, since we are all in some way dependent on each other and on existing structures for access to resources and to gain meaningful lives. Independence as such should be redefined to express freedom of choice based on equal access to social resources.

The second area Galvin looked at, which is closely related to that of independence, was paid employment. Since most people define themselves and others according to occupation, its loss creates a void, a loss of identity in the disabled person. One of the subjects put this point over well:

I felt useless and of little worth because I could not go back to the job I had had prior to my accident . . . As a fairly high functioning individual I felt like a total waste and I internalised the devalued attitude I continually encountered in others, in the media and even in myself. I often described myself as a ‘parasite’ because of inability to work and because I receive ACC [accident compensation].”

The idea is not so much that employment brings in financial reward, but that it somehow confers an identity, and with that a meaning (or value) to life. On the other hand, some have argued that disability in itself provides a challenge to the accepted imperative to work: “Our freedom from the competitive trappings that accompany work in our society may give us the opportunity to demonstrate its essential elements. …we can act as a symbol for the pre-eminent claims of non-utilitarian values, a visible challenge to anyone who treats his job as a final end itself“. Although the social model of disability claims that the removal of architectural and discriminatory barriers would increase access to employment among disabled persons, there are some who by the very nature of their disability cannot work. As such, some more activist theorists claim that work should be rejected as crucially definitional of social membership. Galvin exposes the problem with taking such a stance: “…the expectation that everyone should work, both to earn a living and to define themselves, is so ingrained that to suggest that it is possible to develop a meaningful and pleasurable life outside it seems akin to heresy.” However, she suggests that unless such a shift in thinking takes place, there will never really be any meaningful change in social attitudes to disability.

The final area that Galvin discusses is the appearance/sexuality category. Low self-esteem and negative body attitudes are experienced principally as a result of the reactions of others, both well-meaning and denigrating. Since our ideas of what is physically desirable are principally formed and reinforced by cultural stereotypes, it is inevitable that the disabled body will undergo a negative impact on sexuality. Some of the views on this are best expressed by the subjects themselves:

“…I see myself naked in the bathroom mirror, and suddenly that sight redefines me”

“…how dare you view yourself as a sexual being? You’re less than physically perfect and the thought of you in the throes of passion is utterly distasteful to any “normal” person”

“…who’s going to marry [pause] who wants to go out with a bloody old cripple?”

“No matter how many times he tells me how attractive I am, so much within me, as well as so much that surrounds me, conspires to tell me otherwise”

On the other hand, some of Galvin’s subjects speak of the liberating effects of their disabilities, empowering them, or rather forcing them to explore alternative ways of achieving and giving sexual pleasure, experimenting with techniques they would otherwise never have tried given the rigid prescriptions of penetrative sex. In a sense they are truly embracing the question posed by Halberstam and Livingston – “What is allowed to be fucking?” and indulging in sexual practices where “genitalia become fetishes or second-order metaphors” (1995, p 12).

One of the things that emerges from this part is the feeling of regaining control of an area that has been lost. The body is the site of deviance, of damage, but that does not exclude it from the realm of pleasure – why should such physical intimacy not be enjoyed by disabled persons? This is an area for further investigation, and one which disabled persons themselves are quite vehemently exerting control over.

In the conclusion to her piece, Galvin makes the observation that: “…most of those who came to challenge the values which had disabled them did so purely because their marginalisation had taught them to question things that had formerly appeared to be self-evident ‘truths’” perhaps discourse should somehow embrace those questions and use them to highlight what is currently wrong with social attitudes to disability? This is why I am reading such work as this, to help guide my work on what needs to be addressed, in the eyes of disability studies theorists. At least having knowledge of the issues will inform my work and help me avoid pitfalls and platitudes. To be in some sense empowering, my project needs to address the three issues outlined by Galvin – the sense of having independence (self-sufficiency, not having to rely 100% on others), an occupation (value to society) and sexuality (partnership, parenthood). If at least one of those aspects is addressed by the visuals and interview materials, then the project will work some way towards changing perceptions.

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