This is An Unquiet Mind , a monthly column by s.e. smith that explores disability identity and its interaction with the world at large.
I was responsible for thirty seconds of dead air on Berkeley’s KPFA on a Friday afternoon. While thirty seconds doesn’t sound like much in the telling, it’s an eternity in radio, filled with fingers slapping dials and tapping speakers in a state of confusion, searching for the signal. Somewhere, a producer was frantically gesticulating.
The interview started out so well: a conversation between two disabled people about the popular meme of calling Donald Trump crazy, and why it’s a terrible idea. We talked about mental health stigma, about how racism is not a mental illness, about how blaming mental health conditions allows people to avoid their complicity in hate. I was hitting my stride, words flowing smoothly and confidently, not even minding that I’d been forced to do this live.
My host asked, “I notice that you call us ‘disabled people.’ Why is that?”
I delved into a discussion of the medical model, of identity-first language, of how claiming disability as part of my identity is an act of defiance and pride, of assertion that I belong to a community. In the United States, growing numbers of young activists are using the social model to talk about disability—acknowledging that while impairments will never go away, we are often discriminated on the basis of those impairments. We talk about impairments as part of our identity because for us, they are; I would be a different person without mine.
I foolishly thought this was the kind of softball question that interviewers toss out when they want something explained for the audience.
“I actually prefer ‘person with disabilities’ myself,” my host said, in a mild-mannered voice, and I was stymied. Frozen. An eternity of silence stretched between us.
After several ice ages had passed and Bay Area rush hour traffic had progressed precisely six inches, I found my way back again. “Well, I mean, I think it’s important to acknowledge the contributions of elders who have worked so hard for disability rights, and what a huge effort it is to get non-disabled people to treat us like human beings. ‘People with disabilities’ is better than ‘handicapped’ or ‘crippled’ or other things; I know that term is very rooted in a certain era of disability liberation, without which we wouldn’t be here today.”
We had a tentative, polite discussion and then the hour was up and the feed from the studio cut in, filling my phone with top-of-the-hour updates. It was perhaps one of the most productive discussions I’ve had about the schism between person-first and identity-first language in a long time, perhaps because both of us were acutely aware that it was being broadcast live. Neither of us convinced the other of anything, but both of us left with something to think about.
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We talk frequently about “the disability community” in grand, sweeping terms: The disability community thinks this, the disability community does that. It’s a bit of a misleading thing to say, though, because there is no singular disability community, just as it is impossible for me, a particular disabled person caught up in a particular moment, to speak for every disabled person.
Disability is an extremely diverse identity. It is not just that no two disabilities are alike, that disability can take a myriad of forms, that disability is variable and can even be transient. It is also that most of us are rarely just disabled, and that informs our lives every bit as much as our disabilities do. As a mentally ill person, I am in danger in interactions with police, for example. As a trans and disabled person, I am vulnerable to intersecting forms of health care stigma and much more at risk of abuse than those who are just trans or just disabled. These things inform my understanding of disability and the world.
It should come as no surprise that disabled people disagree with each other on things that, to the outside world, may seem straightforward, basic, obvious. What to call ourselves. The language we like to use. Our own personal political priorities. What it even means to be disabled.
I am in conversation with a friend on the outdoor patio of a restaurant in Oakland. We have to sit there because the indoor part is inaccessible, and we don’t have time to find another location. Fortunately, it’s sunny.
She picks at her salad as I relate my infuriation over people’s fixation with curing disability, rather than supporting disabled people who want to lead full and independent lives.
“It’s like none of them have even considered the fact that we don’t want cures. We want civil rights.”
“I wouldn’t mind a cure,” she says, carefully spearing her arugula.
“But you’re a disability rights activist!”
“And I want civil rights and to be able to walk again. That doesn’t mean I want to force cures on anyone else. I just think it should be an option.”
She has jarred me out of my deeply held convictions, out of my belief that wanting cures is an outgrowth of self-hatred. We split a slice of lemon-ricotta cheesecake for dessert. We rush to make the disability rights lecture we’re attending. There’s pee in the BART elevator, and on the platform, someone asks me, “What’s wrong with her?”
“What’s wrong with your manners,” she says.
Fellow disabled people—people with disabilities—frequently challenge each other like this, pushing each other to think beyond our own attitudes. Perhaps it’s reflexive, since we’re used to doing it for the nondisabled people all around us. This is sometimes treated as “infighting,” both by some disabled people who think it’s important to toe the line as a collective, and by outsiders who use it as an excuse to privilege some disabled voices over others.
I want to surround myself with people who are unafraid to argue with me, for I learn so much more from these conversations than from only paying attention to the people I agree with. Toeing the line, being nice and getting along: These are not the things that have created change and they will not do it now—I will not accept a politics of “wait your turn” and neither will the people who push me to do better, to think more carefully.
It is frightening, sometimes, this intra-community discussion. It is a scary thing to make yourself vulnerable by venturing to disagree, particularly if an opinion is well-established and widely believed. There is a responsibility for those on the other side of that criticism, to resist the desire to shut it down.
Maybe it empowers us, emboldens us, to press uncomfortable issues with people outside our community, too.
“You get proud by practicing,” disability rights icon Laura Hershey once wrote .
It is this that I carry with me everywhere, a seed of rebellion, just add water (or bad opinions). When I’m invited to a working group on developing new guidelines for gender-inclusive practices in obstetrics and gynecology, it is this that gives me the pride to push back when fellow members espouse disablist language, or don’t consider the ramifications of a proposed recommendation for the trans community.
“You shouldn’t assume that disabled people aren’t sexually active, or don’t want to have children,” I write in the margins of an early draft. “Consider reframing more supportively.”
“This is supposed to be about gender,” someone snaps on a group call.
“But it’s all connected,” I say, thinking of a friend who couldn’t access gynecological care because the exam table was inaccessible, and not rated for her weight, the humiliation and outrage she expressed when she called me from the street corner, waiting for the paratransit bus to arrive.
My father once told me I was too argumentative, too uncompromising, too much, and while he didn’t mean it as such, I took it as a compliment. If I’m arguing, I’m breathing—if I’m breathing, that means I survived another day by tooth and claw. If someone else’s words are pushing at my edges, fraying my deeply-held beliefs, making me uncomfortable, well, there is something to be said for the fact that I am alive to experience those feelings, in a world where so many of us do not survive.
This fixation on “getting along” does not serve us, only those who would prefer that we remain small and quiet, who chide us for being disruptive with our chaotic, uncooperative bodies and voices. It is our great shame that sometimes those who chide the loudest are among us, telling each other we must perform disability appropriately, must move in lockstep with everyone else. That strikes me as a poor world to live in, one in which I must condemn those who share my struggle for not acting, believing, thinking precisely as I do; where is the liberation in that?
