Illness, Disability, and Dignity

By Yusuf Lenfest

Medicine is meant to heal our ailments and treat our illnesses. Our deep knowledge of the body and the numerous mechanisms that contribute or correlate to good health is considered a triumph of the medical sciences. We can now perform transplants with relative ease, offer prosthetics to those who require them, and even cure some forms of blindness. But so much of modern medicine today is built around quantitative data—family histories, success and morbidity rates, pathologization, statistical analyses—without much conscious consideration of how one understands, copes, or derives meaning from their experience. True, such data is gathered for the purposes of more accurate diagnoses and as the first defense against an illness or medical condition; but physicians are taught to concentrate on the cure, and while few would dispute that that is certainly a good thing, we also ought to keep in mind that excessive focus on a default measure of “normal” does not necessarily allow us to express the diverse ways of being in the world nor adequately account for the ways in which people embrace their conditions.

Some autistic individuals, for example, believe that autism should be accepted as a difference and not as a disorder. That the autism spectrum is precisely that—a spectrum—is important: on the one hand, statistical analysis may reveal that these individuals are in the minority versus the average population, only 1%; but on the other hand, to take a different perspective, it means merely that the characteristics of these individuals manifest in a way that is atypical with how the institution and culture of medicine classifies them. Lest we forget, medicine is part of the dynamic structure of society and social norms—in the background and the foreground—of knowledge-making, and it is imbedded in place and society, as part of the structures existing in institutions. It is not possible to consider theoretical or epistemological claims apart from practical knowledge and applied sciences. Continue reading