Opening Minds

I don’t remember the first time I saw my brother, Jason. What I said, however, is now a family punch line: “Nice baby, Mom.” 

Jason was born with cerebral palsy, muscular dystrophy, and hydrocephalus. My mother, Gail, is now disabled through degenerative disc disease, TMJ, chronic migraines, fibromyalgia, and, more recently, CRPS (Complex Regional Pain Syndrome). As a disability sibling and son, I have long witnessed the stigmas and oppressions of disability. When someone uses the R word or takes a “handicapped” parking spot because their errand will just “take a second,” I cannot help but wince. Yet my interest as an ally is not in policing language usage or placing passive-aggressive notes on offending cars (though I admit it provides some catharsis). 

Instead, I focus my academic life on the questions such experiences raise. What do our views about disability say about us? Are they, in fact, true to the experiences they purport to be about? How do our assumptions and prejudices about some bodies and minds lead to oppression? And how can we change? How can we make the world a more inclusive place for people of all sorts?

My brother spent his days in a bed or wheelchair. He required twenty-four-hour care, and my mother was the primary person who carried out that dependency work over his twenty-three years on earth. Jason was visibly disabled, and Gail is invisibly so. For each, “being disabled” could hardly be more different. My mother faces a host of distinct stigmas due to being a woman, due to the invisibility of her disability, and due to its concomitant pain. Doctors, both male and female, often discount what she says or simply refuse to take her as a patient. Her doctors don’t see her on the days she cannot get out of bed, because on those days she must cancel. When she can finally make the appointment, she walks in, and much is assumed. To get the type of care she needs, my mother often finds herself in the opposite situation of my brother: she has to emphasize her “disabilities” to get care, whereas with Jason we often had to deemphasize his “disabilities” so people would see his life as one worth living and thus one worth care.

In disability activism and disability studies, a distinction is often made between disability and impairment. Impairment names a person’s embodied condition, whereas disability names the social problems and stigmas that result from a given impairment. 

Disability is the largest minority identity in the US. Given the broadening of the ADA in 2009, the legal category of disability covers everything from ADHD, a newer diagnostic category, to paraplegia, one of the older. Even on conservative estimates, one in every five people is disabled. If “disability” is understood simply as a way of being in the world that does not fit with one’s own ability expectations or that of one’s society, disability is everywhere once you know how to look for it. This is not to say that we are all disabled. As the distinction between disability and impairment already suggests, we experience stigmas very differently based upon our particular minds and bodies. 

My dissertation examines how concepts of ability and disability affect ethical theorizing. Not to give away the punchline, but the history of ethics fails miserably when it comes to the experience of disability. My hope is that we might fashion better ethical theories, theories that take the remarkable range of bodily variabilities into account and afford value to each. When people meet me, they often ask why or how I began studying philosophy of disability and disability studies. They ask that far less often when it comes to my interest in ethics, phenomenology, or the history of philosophy. However well intentioned, such questioning often betrays that people are curious to know why I study this when I appear nondisabled and disability appears to be a “special” topic. 

This points to a disturbing social tendency: people see disability as a problem, and see the study of it as relevant only to those living with disabilities.  As a disability sibling and son, and as a philosopher, I would simply note: every single one of our lives is made livable through an astounding number of supports. The oxygen we breathe, the roads by which we travel, the education we receive, and the spaces we build or destroy—all these things form the very fabric of what we unthinkingly consider our “individual abilities.” 

The truth is, we cannot do things without others. And not just “other humans,” but others of all sorts. Innumerable supports afford us life and the values prized in it. When the world is set up in such a way that some can do less than others just because they use a wheelchair to get around or learn or speak in a non-“normal” way or whatever the case may be, one should not pity or look down or even find encouragement by reducing them to an inspirational example. One should seek to change the world, from its concrete reality to shared ideals, such that we all support each other better.