The Yale Journal for Humanities in Medicine

On Esthetics & Disability

Tom Connors
tomconnors3@comcast.net

To some disability conveys poignancy, the pathos of what once was or might have been. There is that element in the contemplation of disability that compels one to consider an alternative universe, one in which a given course of events precludes a disability. I liken it to considering what might have been had I joined the army or acquired a law degree. Journeying down one or another of the myriad paths, chosen at random from so many possibilities, is an enticing exercise. Such sojourns of the mind, if not unique to humankind, are a highly developed in our species. This capacity to dream, to envision an alternative life course has come to be viewed as inherent to our intellectual life.

On more than one of these journeys I have wondered at how, in this culture if one departs significantly from normative ideas relative to intelligence, behavior, or physical appearance one's perceived worth is in jeopardy. It remains for us - people with disabilities - to establish our worth in the face of negative ascription.

Those with whom we share our lives value us, but what is it that informs this affirmation of our worth? Is it the remembrance of what once was, or the unique image of a cherished person rendered attractive by sensibility? A smile remade by broken teeth evokes a certain feeling of loss; yet the image altered, if not handsome, can nonetheless be engaging.

On one voyage of reverie it occurred to me that it's a matter of value and expectation, that is, the value we assign to events and individuals, who disturb our expectations. Whether this value is positive or negative is subjective if not arbitrary. It is not unusual for patrons to pay a great deal for art that unsettles established norms, or conversely for citizens to create laws prohibiting public display of art that jars normative artistic themes (Giuliani v. Brooklyn Museum).

In a media driven culture we value what is normative and view what is not as either beautiful or ugly. Beautiful, if in violating the norm, it taps some more universal esthetic, ugly if merely different without invoking some arcane sense of rightness.

Disability in the typical course of events is judged a negative departure from a societal norm. Those of us with visible disabilities feel the palpable change in the social environment when we enter a room. Many of us become skilled managers of social interaction; we allay fears, entertain, and reduce the tension inspired by our disability. The price -- endless stage direction and an unrelenting sense of what it's like to be the other. This is not to say that one's disability is a burden, it is more appropriately viewed as a catalyst, one with the potential of triggering volatile social chemistry.

What I have cited merely describes the reality of a person with a disability in modern culture. I can argue that it isn't always so, in times past we have been honored deprecated, sanctified and vilified. Every possible reaction has been manifest at one time or another, but never were we unidentified. By virtue of differences in intellectual capacity, behavior, or appearance we are always identified as separate and distinct -- as the other.

Published: April 24, 2005