Disability, Life Narrative, and Representation

This article is featured in the Disability Studies Reader 2nd edition, Routledge 2006 pp 399-401. Although the article deals mainly with autobiographical texts, it throws up some interesting and thought-provoking issues surrounding the disabled debate. To begin with, the Thomas Couser makes a quite profound statement about how disability is generally overlooked as a minority status, although it is in fact a more fundamental distinction than race, gender or ethnicity. Disability is an inescapable element of human existence and experience. Although it is as fundamental an aspect of human diversity as race, ethnicity, gender, and sexuality, it is rarely acknowledged as such. This is odd, because in practice disability often trumps other minority statuses. That is, for people who differ from the hegemonic identity in more than one way, certain impairments — such as blindness or deafness — may function as their primary defining characteristic, their “master status.” Why is it that other minority groups seem to have a voice, a support network? Perhaps this has something to do with the wide range of disabilities and the obvious problems with grouping them together or labelling them, which in itself is a kind of oppressive act. As such, as Couser points out, “...disabled people have been hyper-represented in mainstream culture; they have not been disregarded so much as they have been subjected to objectifying notice in the form of mediated staring.” This is because they have had, since the middle of the 20th century, a higher profile in culture and the media, nevertheless “The cultural representation of disability has functioned at the expense of disabled people, in part because they have rarely controlled their own images.” Although, as the author points out, this trend is beginning to change, there is still great room for improvement. This comes back to the arguments surrounding empowerment that Hevey was discussing. This is an element that I want somehow to bring to my project, without actually handing over the helm (I will still have ultimate editorial control) I wish to incorporate some means of empowerment, which goes further than merely letting the subjects speak for themselves (although this might not be possible or even relevant in every case, I’d at least like to show some evidence of such an approach with some subjects).

The author is speaking about controlling one’s own narrative, and this is something that I looked at with the ethnographic approaches that James Clifford cites as exemplary collaborative works, or the ethical and empowering methods Sarah Pink describes. Although Couser is speaking specifically about autobiographical written work, the same basic theory can be applies to visual methods, which are also a form of narrative. As he points out, this forms part of a broader cultural manifestation of the human rights movement: “Disability autobiography should be seen, then, not as spontaneous “self-expression” but as a response—indeed a retort—to the traditional misrepresentation of disability in Western culture generally.” Meaning that once one has one’s own voice, one can challenge and expose stereotypes; without the platform, one does not have the opportunity to express a point of view or show that attitudes need to be reassessed. This is the kind of work I’m aiming at, though not strictly autobiography per se, but biographical.

Couser makes an interesting observation: “deviations from bodily norms often provoke a demand for explanatory narrative in everyday life. Whereas the unmarked case—the “normal” body—can pass without narration, the marked case—the scar, the limp, the missing limb, or the obvious prosthesis—calls for a story people with anomalous bodies are oft en called upon to account for them, sometimes quite explicitly: they may be asked, “What happened to you”? Or, worse, they may be addressed as if their stories are already known.” Disabled people are thus required to explain or justify themselves or their disability, a humiliating violation of their privacy. “In effect, people with extraordinary bodies are held responsible for them, in two senses. First, they are required to account for them, often to complete strangers; second, the expectation is that their accounts will serve to relieve their auditors’ discomfort. The elicited narrative is expected to conform to, and thus confirm, a cultural script.” Somehow knowing the reason for some form of disability can explain it, can remove it from the proximity of the onlooker – it happened as a result of X and Y, and since I do not engage in X and Y, I am not vulnerable to affliction. It is a kind of reassertion of one’s own normalcy, just as Rosler pointed out that photographs of the poor serve to comfort one’s feeling of wealth. Having an explanation or narrative can also help people to assign blame or fate as the cause, in any case, the narrative is often written for the disabled people, without consultation or consent: “For people with many disabilities, culture inscribes narratives on their bodies, willy nilly.” Even if my work will not be autobiographical, the end result should be true to the intellects and sentiments of my subjects, and not narratives assigned ‘willy-nilly’. This will be achieved through maximum collaboration and transparency.

Long the objects of others’ classification and examination, disabled people have only recently assumed the initiative in representing themselves; in disability autobiography particularly, disabled people counter their historical subjection by occupying the subject position.” Although the author is speaking specifically about self-representation, I think this rationale can also be extended to collaborative work – the importance is the consent about how the subjects are portrayed, and not about any authorial or artistic vision on the part of the producer. In this I need to be flexible and open to dialogue.

Autobiography, then, can be an especially powerful medium in which disabled people can demonstrate that they have lives, in defiance of others’ common sense perceptions of them.” Again, the medium does not necessarily have to autobiographical, although I could include some autobiographical elements such as photographs or drawings or written word created by the subjects. The point is that stereotypes are challenged, preconceptions are questioned – Couser alludes to autoethnography, which engages with or contests the colonizer’s terms of description or definition: “life narrative can provide the public with controlled access to lives that might otherwise remain opaque or exotic to them.” While it remains such, the disabled person continues to be perceived as the Other.

The author points out that “in a world with enormous technological capability to sustain life and repair bodies in the case of acute illness and injury” there is nevertheless “very little commitment to accommodate and support chronic disability.” This is a very relevant point, and one that I had not considered before. He also says that most representations of disability in contemporary culture are often “…moralizing, objectifying, pathologizing, and marginalizing” I think these are catchwords that I need to make sure that my project work avoids at all costs!

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