Bad Genes: On Fertility and Disability Rights

Living with an unquiet mind is like living with a noisy, restless, anxious human who tugs on your sleeve for attention.

This is An Unquiet Mind, a monthly column by s.e. smith that explores disability identity and its interaction with the world at large.

There are over forty million mentally ill people in the United States. I am one of them. To be crazy—to live, as I do, with an unquiet mind—in a culture that hates you for it is, in a sense, a minefield. Particularly when mental illness is not the only disability that inhabits your life. In this explosive-strewn landscape of disablism, you never quite know when you are going to step on something that will explode in your face.

Perhaps it’s the person who casually says at a dinner party that of course you wouldn’t be having kids, because you wouldn’t want to pass on your “bad genes,” and you’d probably make a bad parent anyway. Maybe it’s the swift move to blame mental illness for so many social ills—mass shootings, a bigoted president. Or the glaring absence of disability from so many cultural conversations, a reminder that we should be both seen and unheard, even when our bodies are used as political objects.

Sometimes it is the things inside you waiting to explode, the ticking time bomb of your own mind. Parts of you are in a war against themselves and society seizes at that weakness, tugging and pulling, until you fall apart. So much of my life has been about putting things back together again, which is perhaps why I took up quilting—there is something deeply satisfying about turning abandoned shreds into something beautiful.

Living with an unquiet mind is, I think, at times, like living with another human—a noisy, restless, anxious human who tugs on your sleeve if you haven’t provided enough attention. My brain is not like other brains: It never stops. It obsesses and fusses and fidgets and throws tantrums. Last night, I tossed and turned until 3 a.m., obsessed with the word “pomegranate.” Why do we call them pomegranates? The Oxford English Dictionary didn’t furnish sufficient answers. I thought about a pomegranate, ripe and splitting. I thought about Hades. I thought about how a fruit of the dead had become a fruit of fertility.

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Fertility and I have never been easy companions. When I took the first hesitant steps into medical transition, sterilization was the first thing I wanted. Not because I was afraid of passing a shuffled version of my particular arrangement of chromosomes on to another human, or because I thought I would be an unfit parent, but because the very thought of fecundity made me feel dizzy and slightly sick. The awareness that I could get pregnant loomed over every sexual encounter involving a penis. I could barely articulate my deep, visceral fear to health care providers when I begged for a tubal ligation, and when I tried not to flinch through invasive physical examinations that made me nauseous with dysphoria.

Long before I was wheeled into the operating room, I progressed through a series of steps mandated by the state in an awkward, clumsy, insufficient atonement for the sins it had visited on bodies and minds like mine. The state of California was the most prolific mass coerced sterilizer in United States history; at least 20,000 people were sterilized in the state in the heyday of eugenics. Most of them were low-income people of color.

The state has not paid reparations to those affected, but it has required people to sign a series of forms before sterilization procedures, to receive counseling, to undergo waiting periods if they are receiving health care covered by the state. In my case, the physicians couldn’t sign the authorization forms fast enough once they saw my mental health diagnosis. The patient must affirm, again and again, at each appointment, in pre-op, and before the anesthesiologist will dispense the premedication that begins to wipe the edges of the world away. But the wheels are greased when the patient lives in an undesirable body.

Poring through mass sterilization records is not, for me, simply a journey to “the past,” a time when things were different. It is a reminder that this is very much our present as well, though it is sometimes elided from conversations about reproductive rights. Coerced sterilization still happens—in 2014, the state finally banned sterilization of female prisoners after a scandalous series of headlines, but in hospitals large and small across the state, there are still people who are being pressured into sterilization. Many of them are, like me, disabled, but they lack the power and privilege I hold, sometimes even the legal right to consent. It is their parents and “guardians” who do the consenting for them. It’s for their own good, you see.

These stories rarely surface. When they do, after a suitable period of shock and horror, they are quietly folded up and put away again until the next time they are needed. The blizzard of press releases from leading reproductive rights organizations that constantly weighs my inbox returns to familiar, well-trod ground: birth control and abortion access.

I occupy a troubled, liminal, uneasy space within reproductive rights conversations. People like me—disabled people—introduce uncomfortable notes of complexity to a discussion that is often limited simply to abortion access, to birth control, to, at times, capitulation to the right’s attempt to make this a moral problem: This kind of abortion is okay, this kind of abortion is unpleasant and best avoided. That capitulation sometimes comes with deep notes of disablism: We must oppose twenty-week bans, you see, because what if something goes wrong with the fetus?

I flinch when I hear these words because what I hear is that bodies and lives like mine have no value. I do not hear acknowledgement that disabled people deserve a place in this conversation — that in fact our reproductive rights needs may be quite different that those of the white, cis, nondisabled, heterosexual female voices who take up so much oxygen. It is like showing up to a dinner party only to discover that you were lied to about the start time, and there is no seat at the table for you anyway.

When I think “reproductive rights,” I think of bodies of disabled children mutilated on order from their parents, who claim that sterilizing their children “protects them from abuse.” I think of children seized from loving homes because the state believes disabled people are unfit parents. I think of disabled people struggling to conceive and fighting to access assisted reproduction and fertility care. I think of disabled people being turned away from adoption agencies. I think of disabled people denied birth control “because you people don’t have sex.” I think of these things because I know these people, because they are my people.

I think, too, of abortion. I like abortion. It should be available on demand and without apology. I was glad it was there when I needed it. The absolute right to choose includes the right to make all choices, and editorializing them introduces a note of condemnation. It is not my place to comment on what another person chooses to do with, and for, their body.

My reflexive response to frustration and exclusion—two feelings that weigh heavily on me as I attempt to engage with mainstream reproductive rights conversations—is often one of defiance. I remain staunchly opposed to the Women’s March and everything it stands for despite its valorization, for I have not forgotten its disdain for the disability community. When those same leading reproductive rights groups try to leverage disability as a political tool, I call them on it. “But you’re muddying the debate,” someone says. “You’re giving conservatives an opening.” What I hear: “Wait your turn. It’s not time for your issues yet.”

This entirely human feeling is one the right leverages as it attempts to woo disabled people; it wants us to fear a resurgence of eugenics, wants us to live in terror that, left to their own devices, nondisabled people will cheerfully abort disabled fetuses, will perhaps go a step further, using preimplantation genetic testing to select only the most perfect and pure of embryos. Those of us with congenital disabilities are warned that we will become extinct under this paradigm, and the mainstream reproductive rights movement does little to counteract this messaging. It reacts with a fury that pushes some disabled people closer to the right.

Both sides want to play a game of gotcha that snarls us in rhetoric, trapping us, making it impossible to move towards justice. Neither side tells me “your life is worth living.”

Oh, what a radical thing it would be if those who want to reduce reproductive rights to a simple, reactive framework could pause for a moment to take in what surely they already know, somewhere deep down: that as long as some lives and bodies are valued as lesser than others, the voices of those with the most to lose should be lifted up.

Maybe I’ll never know why we call it a pomegranate, even as I eat it, spilling seeds like tiny jewels, staining my fingers and tongue. But I do know this: My unquiet mind has spent too many years binding itself to silence, accepting that its time will come. The time is now. The disability rights movement is tired of waiting. It is noisy, angry, ferocious, challenging, and it expects better because it sees the potential for doing better, even within the very social movements that feel so exclusionary.

I found my voice and rooted myself deep in the ground when I embraced my disabilities. That confidence of self, disability pride, disability defiance, disability as cultural identity and community, is often threatening. It disrupts what outsiders think they know and understand about disability; “if only they weren’t so . . . ,” they say, still refusing to make room for us at the table. This crystallizes for me when I write an essay about my frustrations with being viewed as “inspiring” simply for being disabled and being a writer, for being disabled and being alive, and an editor at the very publication I’m writing for attacks me in the comments, snarling that she can “call you inspiring if I want to.” She is not disciplined. The very thought that a disabled person should have a voice, and, moreover, a voice that conflicts with what society believes about disability, is threatening. My unquiet mind and I would like to take you on a journey into the heart of disability culture; I am not here to justify or apologize for my existence, but I am here to help you understand it.