The Minority Body

About 10 years ago I took a trip to Hawaii with my husband and kids and stepped on a sea urchin as I clambered out of a kayak onto a rock. The pain was excruciating and I spent the next several days not enjoying the gorgeous sights of the Big Island, but soaking my foot in salt and vinegar and googling "sea urchin."  The strange thing is that pretty soon afterwards, I didn't regret what had happened, but accepted it as part of what made this trip especially intense, vivid, and memorable.

When bad things happen, why don't we regret them?  I heard an interesting talk on this question at the Rocky Mountain Ethics Congress a few weeks ago--the speaker was Camil Golub, a philosophy PhD candidate at NYU. He skillfully canvassed a multitude of possible explanations, and settled on the idea that these kinds of bad-but-not-regretted events become a part of our biographical identity.  This isn't supposed to be a metaphysical concept--the idea isn't that I became a whole new person when I stepped on the sea urchin. Rather, in some looser sense, bad things can alter who we are, so that we can't distance ourselves from them without distancing ourselves from ourselves.  So we say we're glad these things happened, or at least don't regret that they happened.  This doesn't stop them from being bad things.  I highly advise all people to avoid stepping on sea urchins--it's excruciating and the resulting problems will absorb your attention for weeks to come.  However, if you do step on one, it's quite possible you won't regret it. That's a strange combination of assertions, but the biographical identity account makes pretty good sense of why a reasonable person might have that set of attitudes.

I found myself thinking about the sea urchin story and unregretted bad things while reading Elizabeth Barnes's new book about disabilities, The Minority Body. Barnes claims that disabilities (physical ones--she doesn't talk about mental disabilities) are mere differences, as opposed to being bad differences or good differences.  According to her, being blind, deaf, paraplegic, and so on, are akin to being gay or being male. It's value-neutral whether you're gay or straight, value-neutral whether you're male or female, she says, and it's likewise value-neutral whether you're blind or sighted, deaf or hearing, paraplegic or walking.  Golub said nothing about disabilities in his talk, but I'm inclined to think perhaps he gives us the tools to think about this more coherently.  Being blind is a bad thing some people might not regret, like my vastly more minor encounter with the sea urchin.  Reason: bad things sometimes become woven into our biographical identity. You can't wish they had been otherwise without wishing yourself away.

Barnes says no to that assessment.  Being blind is a mere difference on her view, not a bad difference. One of the main arguments she makes is that the mere difference view accords with the testimony of disabled people themselves.  She thinks we'd be doing these people a "testimonial injustice" if we insisted disabilities really are bad, even when they say otherwise.  Take, for example, this recent letter to the editor of The New York Times. 

Erin Hawley says she wouldn't want her disability taken away, despite "the pain, the anxiety and breathing problems."  Barnes calls these "local bads" and doesn't think they go to the heart of the matter.  She wants to respect testimony like Hawley's and classify disability itself as a mere difference.  But what is Hawley saying?  Her testimony is compatible with construing her disability as an unregretted bad. In fact, even her language is quite reminiscent of "biographical identity" talk.  "What I've experienced in life is a story worth telling, and road worth following, despite how society tries to tell us otherwise."

This business of respecting testimony is tricky.  Whose testimony counts?  Almost all of the testimony Barnes cites comes from disability activists, and surely that would be the group most likely to see their disability in a positive light. I also wonder about the point in time when testimony is revealing, as testimony can change. In the initial stages of going blind or becoming paraplegic, a person can find the changes excruciating (as Barnes certainly admits, calling these "transition costs"). A few years ago I met a very young person who had suddenly and permanently became paraplegic--clearly a very, very hard thing for them to face.  I'm pretty sure they weren't just distressed by the transition, but by the prospect of no longer walking, ever, and having other health problems.  This person would have testified, at that time, that their disability was an extremely bad difference. It could be that later on they developed a more positive attitude, but I see no reason to regard the later positivity as superseding the earlier profound disappointment. I don't see that only one of these attitudes reveals The Truth about disabilities.

In fact, I think Barnes herself doesn't even entirely respect the testimony that she focusses on, and this is an odd flaw she never addresses. The testimony she focusses on doesn't just support the mere difference view, it supports the good difference view. And in fact she paraphrases it that way, again and again, yet never acknowledges this particular gap between testimonial evidence and theory.  This is particularly apparent in sections of the book where Barnes is trying to explain why disabilities are mere differences, while cancer (or my sea urchin accident) is a bad difference, even though there are people who are glad they had cancer (e.g. Lance Armstrong says this in It's Not About the Bike). Disabilities aren't like cancer because, she says, people value disabilities.  She notes this over and over again--

[Joe (some imaginary cancer survivor)] doesn't value having cancer, even if he values some of cancer's long-term effects on his life. Linton and Dostoevsky, in contrast, ostensibly value being disabled. (p. 111)

LaSpina strongly rejects the idea of a 'cure' for her disability. She is proud of her disability, and describes it as a positive experience. (p. 116)

Disabled people aren't simply claiming to value 'who they are' as people. They are claiming to value disability. Valuing disability is the crux of the entire disability pride movement--with all its parades and its festivals. (p. 122)

Disabled people don't merely say that they value disability. They go on disability pride marches. They create disability-centric art, dance, and literature. They actively celebrate disability in myriad ways. (p. 141)

Barnes complains that this testimony is ignored by people who regard disabilities as bad differences--she urges "taking their word for it" (a chapter title). But taking this testimony at face value, you wouldn't just elevate disabilities from being bad differences to being mere differences, you'd elevate them to being good differences.  That's what people are saying here--they value disabilities, as opposed to seeing them as neutral.  Barnes seems to think she needs to go along with this, to solve the cancer puzzle, but in fact doesn't go along with it.  She thinks it's not positively good to be paraplegic or blind or deaf, it's value-neutral.

A philosophical theory about disabilities can't just take what people say and repeat it. If that was a sound methodology, what we'd surely have to say is that for some people disabilities are bad, for some neutral, and for some good.  A theory is inevitably going to sift and interpret and take into account considerations that go beyond what's on the minds of disabled people themselves. But that being the case, I think the bad differences view is just as much in the running as the mere differences view; both are at odds with what some people say to express disability pride.

In fact, I do think the bad differences view is the right view, but also think the concept of biographical identity supplements it helpfully.  Disabilities often become a part of "who we are" and are not later regretted, but they are still bad, and to be avoided.  Why are they bad? That's a big question I can't deal with in this blog post (I discuss it in chapter 6 of my book The Weight of Things).  But here's one thought about the issue.  Barnes points out that people with disabilities don't seem to self-report lower levels of well-being, in studies of happiness and life-satisfaction.  She also complains about entrenched ableism, prejudice, and failure to accommodate.  But this is odd--why such high well-being, if there's so much prejudice and failure to accommodate?

One possibility is that all the prejudice and failure to accommodate must harm people, so that the studies of well-being are unreliable.  But then perhaps they also don't tell us whether or not disabilities lower well-being.

A second possibility is that people with disabilities really do have high levels of well-being, and prejudice and failure to accommodate are still bad for some reason unrelated to the impact on well-being.  But then it's possible to say the same thing about disabilities. They could be bad, despite not lowering well-being. (But why?  Of course that's a difficult but good question.)

A third possibility is that people with disabilities have high levels of well-being, and this shows prejudice and failure to accommodate are value-neutral.  Surely that's absurd. Likewise, we wouldn't be forced to say disabilities are value-neutral, even if it were true that they don't reduce well-being.