Here at MH Blog we're happy to mark Blogging Against Disablism Day. For those readers who've joined us recently, I thought I'd offer a short synopsis of why I personally find disability studies and disability culture a meaningful form of life for thinking about the medical humanities. Then, I thought I'd say something about disablism in the context of stigma and deviance.
Though there continues to be debate over whether disabled persons constitute a distinct community, the community or communities are numerous. One could surmise that everyone is either disabled or a moment away from being disabled (This is not to indulge in the dangerous game where one asserts that "everyone is disabled." One reason for this danger is that it may subsume difference, when part of the point of the disability rights critique is to disentangle difference from deviance. More on this below). Yet, when one thinks of illness experiences and health care encounters, it seems difficult to deny the relevance of disability and its fluid boundaries and shapes. In some important ways, illness experiences are disability experiences. Though neither exhausts the phenomena of the other, I daresay there is extensive overlap. As I've remarked before, those who would deny the relevance of disability to bioethics have not paid any attention to controversies over futility and end-of-life decisionmaking.
As to disablism itself, I tend to think of it in terms of deviance, and stigma. The seminal work on stigma is Goffman's, and he does a masterful job of explaining how we mark out as Other that which frightens us, which seems different. Difference is thereby translated into deviance, and notions of desert and worthiness are (inevitably?) layered onto the construct. One view I particularly like posits a reason for the need to stigmatize a kind of existential fear, in which a person looks at an ill or disabled person and recoils for fear of what could go wrong, a kind of empathic fright. The recoil impels the marking out, and stigma often ensues.
Yet, on the other hand, Drew Leder reminds me of the need to empathize even with the recoil itself that partly fuels so much stigma (and disablism). If the recoil is such a common human reaction, perhaps that suggests a need to bite back the rush to judgment, the felt need to decry such withdrawal. Leder suggests that awareness of the likelihood of the recoil in the face of illness, pain, and disability may make subsequent return and convergence more likely. If one is aware of the recoil, one may be more likely to be aware of the need to tamp down the translation into deviance and stigma, to return to the illness-sufferer, not as the observer, but as a participant in the dialogue.
Specifically in the context of disability rights, so much of the discourse for me revolves around the seemingly impossible task of disentangling difference from deviance, from removing the inherent normativity of the able-bodied. In my own life, I try to celebrate difference as much as possible. I am deeply suspicious of attempts to subsume difference, yet I also think a constant vigilance is needed, particularly for able-bodied persons, to challenge the perceived links between difference and deviance.