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I was diagnosed with systemic lupus in 1996. In the intervening years, I’ve been diagnosed with two other autoimmune diseases, and these illnesses have shaped every aspect of my life. I have slowly grown to understand myself as someone with disabilities. More specifically, I have invisible disabilities. I benefit in some ways from the fact that my disabilities cannot be seen, but as a result I am rarely accommodated for them (yet too frequently shamed when I physically cannot do the things that are expected of me). Those with visible disabilities are often assumed to be incapable or incompetent, irrespective of the nature of their disabilities. This leads not only to insult but also to exclusion, rejection, and the withholding of opportunities and experiences.
I’ve been thinking about disability over the past week or so, in part because of the conversation around Jada Pinkett Smith’s alopecia, and in part because of the wonderful reviews of the new book The Invisible Kingdom by Meghan O’Rourke, about the millions of Americans suffering from chronic illness, which I am eager to read. It’s pretty obvious, but bears repeating, that visuality is an unreliable and sometimes dangerous tool of assessment. Sight as a sense is a matter-of-fact thing. We have it or we don’t. Sight as a social tool is vexing. Yes, we use it in beautiful ways—to get information that allows us to offer comfort, assistance, and kindness. We use it to measure risk, to learn, to develop intimacy. But we also use it in the cruelest of ways, to sort human beings, to judge, to exclude, to be violent.
The human body that is marked as “different” is often misunderstood. Just as someone who has one arm has a particular body, so, too, does someone whose autoimmune system attacks their major organs. The latter may be corralled into the mainstream, while the former is marked as misfitted, but each has a body that demands care of a sort that our ableist society refuses. Our categorizing always requires an asterisk. Other arrangements and connections are possible beyond what we “see,” both literally and figuratively. And within categories, there is always enormous variation. Disability is a myriad of things, and ability is contingent upon the circumstances.
I think about this in the context of the debates around trans athletes. In every sport, body composition and size can effectively disqualify one from competition, or make achievement relatively easy. And yet there is a terror over the “different” body of one particular kind, irrespective of evidence that the particularities of bodies are always at work in athletic competition. There is no “level” playing field in sports. What constitutes unfair advantage and what constitutes the luck of the draw is a social matter, not an objective assessment.
I am misread frequently—both as someone who is fully able-bodied, because of my normative body type, and also as someone who is not as capable as I am, because of my race-and-gender package.
Speaking and writing in public is, for me and many others, in part a corrective. In both generous and cruel ways, my body is read on the surface flatly and inadequately, in comparison to the expansiveness of my interiority. Expression tells a truer story, both of my vulnerability and of my ability.
This brings me back to a point that I make in one way or another over and over again. We fail the people in our midst when we only think of them categorically—and also when we refuse to think of the categories that define them. It is important to attend to both how a person is “read” and how they are “misread.” And most important of all, to listen—or, better yet, to not rely on that vexing sensory metaphor to pay attention (we misread voices too).
Knowing one’s own story, from external achievement all the way to the soft insides, provides an opportunity. Assume the same complexity in every person you encounter. Every single one. And take it a step further: Try to extend the kind of grace that allows for the full portrait of a human being to emerge.