In this essay, Tobin Siebers looks at the social construction of the body, and what repercussions this has on the representation of the disabled body.
“Disability offers a challenge to the representation of the body—this is often said. Usually, it means that the disabled body provides insight into the fact that all bodies are socially constructed—that social attitudes and institutions determine far greater than biological fact the representation of the body’s reality. . . The women’s movement radicalized interpretation theory to the point where repressive constructions of the female form are more universally recognized
and recent work by gay and lesbian activists has identified the ways that heterosexual models map the physique of the erotic body to the exclusion of nonnormative sexualities. Disability studies has embraced many of these theories because they provide a powerful alternative to the medical model of disability.” As with gender studies the body is the primary location of the struggle, the site of oppression. As such, changing how the body is viewed or represented in society is an essential part of disability studies. The medical model here referred to locates disability exclusively in the body, and strives to normalise through isolating and treating the diseased or defective ‘patient’. Once we accept that the body is a social construction, we can begin to challenge prejudices based on physical difference.
Weak constructionism posits that ideas, attitudes and customs that are dominant in society influence how bodies are perceived: “In a racist society, for example, black people may feel uncomfortable seeing themselves in the mirror, while in an ableist society passing civil rights legislation to permit greater access for people with disabilities is thought unnecessary because the reigning myth explains that they neither understand nor desire to enter “normal” society.” Is this how the disabled are viewed? Is this not purely a myth of institutionalisation?
“…people easily perceive when someone is different from them but rarely acknowledge the violence of their perceptions.” We are ignorant or insensitive – the classic parent-to-child “Don’t stare at the woman/man – it’s rude!” how violent is the polite aversion of the eyes? (This is addressed in an interesting way by Anne Finger)
Strong constructionism posits that prejudices of sex, race, gender and ability are based on the linguistics of representation – the body cannot establish its own representation since “the sign precedes the body in the hierarchy of signification“. Siebers uses the Foucauldian concept of biopower to explain the ‘subjection’ and ‘normalising’ power of the state through techniques such as statistics, demographics and medicalisation (sciences used to measure and classify), but goes further to suggest that this is more than a political alliance between institutions of knowledge and power, in fact it determines the way subjects experience the materiality of their bodies: “The human subject has no body, nor does the subject exist, prior to its subjection as representation.” The idea that something cannot exist before it is named or defined; as such the body is first of all assigned a particular value, and then measured against the prevailing social ideologies of the time.
Judith Butler goes further, arguing that the formation of ‘subjects’ requires that a domain of ‘abject beings’ is simultaneously produced, possessing bodies and desires outside the norms of society. Located somewhere between what is acceptable and unacceptable, people with disabilities are not yet subjects in the Foucauldian sense, resisting the subjection and ideologies of society. “It is as if Butler has caught a glimpse of a badly turned ankle under the petticoats of the “normal” world, and this vision of disability somehow provides a means to resist subjection. Disabled bodies come to represent what Rosemarie Garland Thomson calls the “freak show.” “Disability is the unorthodox made flesh,” she writes, “refusing to be normalized, neutralized, or homogenized”
Siebers outlines the problems linked to locating disability in the social constructionist discourse; at first glance it would appear that disability is a social construction: “In a society of wheelchair users, stairs would be nonexistent, and the fact that they are everywhere in our society seems an indication only that most of our architects are able-bodied people who think unseriously about access.” On the other hand, if social success is still described in terms of intellectual achievement, bodily adaptability and active political participation, the disabled body would seem to be anomalous, “difficult for the theory of social construction to absorb: disability is at once its best example and a significant counterexample.”
Citing Foucault’s use of the docile body – a machine-like body that requires constraints and supports, in contrast to the pre-modern figure of health and vigour – to illustrate how well-being and ability are sacrificed in order for humans to enter the modern era, Siebers explains that this description serves to represent the docile body as one in need of eradication, and that “If the docile body is disabled, however, it means that recent body theory has reproduced the most abhorrent prejudices of ableist society.” If the body is seen as the location of pleasure, the nightmare body is one that is deformed, broken or diseased.
“More and more people now believe that disabled bodies should not be labeled as defective . . . but we have not even begun to think about how these bodies might represent their interests in the public sphere for the simple reason that our theories of representation do not take account of them. Only by beginning to conceive of the ways that disabled bodies change the process of representation . . . might we begin to tackle the difficult issues of how access bears on voting rights, how current theories of political subjectivity limit citizenship for the mentally disabled, and why economic theories cast people with disabilities exclusively as burdens.” How is this to be achieved? How do we change the process of representation? As I mentioned at the beginning, it seems that disability is represented in two main ways, either charity or freak show. Does a reconsidered approach to representation include the kind of work that I am trying to produce? Am I actually able to challenge stereotypes or will my work merely reinforce some of these mistaken representations that Siebers discusses? Davis discusses an even more problematic issue related to this in the Disability Paradox (below).
“Only 15% of people with disabilities are born with their impairments. Most people become disabled over the course of their life. This truth has been accepted only with difficulty by mainstream society; it prefers to think of people with disabilities as a small population, a stable population, that nevertheless makes enormous claims on the resources of everyone else.” The idea that something can happen, disease or accident, to make someone or their loved ones become disabled is too horrific to consider, hence we try to avoid thinking about it. Part of the construction of disability, as with other ideas of horror, is that it exists somewhere else – outside of our immediate communities, topographies, but as Joseph Grigely points out, “the colonized no longer necessarily live abroad; they live next door to us, and within our own homes“; once something is perceived as being in closer proximity, it demands to be dealt with on its own terms.
Siebers talks of the way disabled people are stripped of their ability to form communities, first through the individual experience of pain, which he posits as the most subjective of phenomena, the incommunicability of which “enforces a myth of hyper individuality, a sense that each individual is locked in solitary confinement where suffering is the only object of contemplation.”
Images such as these in the media serve to reinforce this concept. The second way that disabled people are made subjects is by medical science, which attempts to catalogue and define the disability so as to treat it, “with the end result that people with disabilities are robbed of a sense of political community by those whom they need to address their pain. No two blind people appear to have the same medical problem or political interests.” Struggling for civil rights is different for disabled persons because they first need to shed their individuality rather than to assert it! “Society creates pain, but this creation backfires, producing a resource to struggle against society—this is the dominant theoretical conception of pain … the pain of disability is less bearable because people with disabilities suffer intolerance and loneliness every day. They hurt because the able-bodied often refuse to accept them as members of the human community.” This is part of the challenge that disability work involves, and part of the message that I aim to put across through my project – that these people, despite appearances, are people with hopes and dreams and ambitions just like anybody else.
“Art works concerning disability or created by artists with disabilities do not hesitate to represent the ragged edges and blunt angles of the disabled body in a matter of fact way (see, for example, Jim Ferris and David Hevey). Their methods are deliberate and detailed, as if they are trying to get people to see something that is right before their eyes and yet invisible to most.” Need to look up Jim Ferris, but I have already found some work by Hevey. The idea is that their work embraces the disability, holding it up to scrutiny rather than smoothing out the edges; confronting it in its disturbing reality rather than avoiding it. One of the things that I have found when talking to disabled people is their ability to be frank, and call a spade a spade, where I have had difficulty in naming things, preferring instead to make verbal allusions rather than saying things outright. The more time I spend communicating with disabled people, the more I am getting over this social conditioning which tells me not to use such expressions outright, since they can cause offence. The problem in Russian is that there is only one term used to express the ideas of disabled or handicapped person – инвалид. The polite expression that I try to use is ‘человек с ограниченными способности’, which is a mouthful at the best of times. Other ways I use to avoid ‘naming it’ is to speak about the equipment (wheelchair, crutches) rather than the condition. I am slowly coming to terms with this.
Citing a work by Cheryl Marie Wade (I look at her in depth here): “To put it bluntly—because this need is blunt as it gets—we must have our asses cleaned after we shit and pee. Or we have others’ fingers inserted into our rectums to assist shitting. Or we have tubes of plastic inserted inside us to assist peeing or we have re-routed anuses and pissers so we do it all into bags attached to our bodies.” This kind of bluntness is what I meant when I was discussing how careful I am with my own language above; Wade’s words don’t cause offence because it is part of her daily reality, but if these words were written by a non-disabled person about the disabled Other, they would come across as offensive.
The author looks at the idea of incontinence as a location of deep-rooted attitude to normalcy: “The inequality threatening people with these kinds of disabilities at every instant derives from a body politic— the real physical expectation that all people beyond a certain age will perform their own bodily hygiene…
Crudely put, unless all adults have their ass wiped by someone else, unless the caregiver cannot wipe his or her own ass, the people who alone require this service will be represented as weak or inferior.”
In an article published on the disability website Ragged Edge, disability rights activist John B Kelly looks at incontinence in particular with regard to pregnancy termination and clinical suicide (“Death with Dignity”): “In our achievement-based society, becoming toilet trained, along with learning to walk and speak coherently, is an essential milepost on the way to full personhood. Fetuses and newborns which may not develop these abilities, on the other hand, are seen as better off not living. Abortion gets slated for fetuses with spina bifida, for example, precisely because of the fears of incontinence, paralysis, and mental retardation.” He looks at how dignity, or rather the indignity of having someone else wipe your butt, is cited as the main reason people choose to end their lives (or in some cases the lives of others!). Kelly says that although dignity may appear as if it comes from within, it is actually the shared opinions of others that shape one’s ‘dignity’. Kelly also calls for a shift in social attitude, likening the uncontrolled flow of bodily waste to menstruation, thereby rallying the feminist cry: “Incontinence must be proclaimed as a natural feature of human variability: ubiquitous in childhood, not uncommon through adulthood, and increasing with age … As any baby could show you, the beliefs and practices attached to incontinence are thoroughly cultural. Cultural meanings can be shifted. Just as feminists declared “the personal is political,” we must assert that incontinence is just another human condition, no more worthy of the death penalty than uncontrolled body temperature.” His point is that if discourse doesn’t openly engage with the issue of incontinence, then society will continue to use terms like “diapered” or “childlike state of helplessness” in arguments supportive of the right to die and euthanasia. Many of the women I am working with were advised, mostly by family members, either to abort or to hand their child over to an institution. Is incontinence a reason to end a life? Is the inability to clean yourself after going to the lavatory enough of an indignation to warrant suicide? These are not questions I think I have the scope or the right to explore in this project. It is definitely food for thought, though.
Siebers also looks at the ideas of suicide and abortion, as well as that of genetic research. He points out that many disabled people are deprived of the choice to end their own lives by the simple fact of being physically incapable of committing suicide. On the other hand, assisted suicide may be seen as a kind of emotional blackmail to encourage disabled people to do the decent thing so as not to be a burden on their families or society as a whole. Could the huge sums of money spent annually on genetic research to try and identify and eradicate the deviant genes not be better spent on supporting people with impairments?
The final part of Siebers’ article describes that a realistic conception of the disabled body is needed to struggle politically with ideas of disability in society: “...this means resisting the temptation to describe the disabled body as either power laden or as a weapon of resistance useful only to pierce the false armor of reality erected by modern ideologies. It means overturning the dominant image of people with disabilities as isolated victims of disease or misfortune who have nothing in common with each other or the able-bodied. Finally, it means opposing the belief that people with disabilities are needy, selfish, and resentful—and will consequently take more than their fair share of resources from society as a whole.” He rejects the social constructionist attempts to merely shift discourse, and demands a mobilisation – proactive participation with society rather than dismissing its attitudes as prejudiced, challenging false ideas and opinions by engaging and opposing them.
“People with disabilities want to be able to function: to live with their disability, to come to know their body, to accept what it can do, and to keep doing what they can for as long as they can. They do not want to feel dominated by the people on whom they depend for help, and they want to be able to imagine themselves in the world without feeling ashamed.” This idea of shame is something that I am very much aware of and sensitive to. As such, my subjects will be involved in the narrative structure and content of the final work. I do not wish to show any aspect of their lives that they are not willing to share, and I will not use any images that I or they think can be misconstrued or show them in a bad light. Some of my subjects have already told me about particular areas they do not wish to show or talk about, and I have used these examples to explain to others how they have control over what is being documented. One of my subjects is concerned about her language skills, and we have agreed to go through the interview material together and repeat any sections where she feels she has not expressed herself very well or has made some grammatical errors. Another asked me to include his interaction with ‘normal people’ as he put it, to show that not all of his friends are confined to wheelchairs. This means the work has a more collaborative aspect, and also that my subjects are fully and positively engaged in the production of the work.
