Anti-choice activists have found what they think is a winning wedge issue: Down syndrome and other “sympathetic” disabilities. The latest attack was in Ohio, where, in late December, GOP Governor John Kasich signed a bill that bans abortions after a prenatal diagnosis of Down syndrome. Ten states have either passed similar bills or have presented them before legislatures. The function, and I suspect the goal, of these laws is not to improve the lives of people with Down syndrome or even to stop abortions based on prenatal diagnoses. Instead, the anti-choice movement is trying to use the public’s positive feelings about cute kids with Down syndrome, like my son, to undermine reproductive rights.
In response to these threats to reproductive freedom, I’ve had to start saying something new and difficult: If individuals want to terminate an otherwise wanted pregnancy due to a prenatal diagnosis, I support their decision.
I’ve spent many years now asserting the need to reorder how we ascribe value to diverse human lives. My son might not participate in the capitalist economy, live independently, or speak (he might also do all of these things!), but his value as a human is intrinsic. I’d like others to see it that way too. Selective abortion, as I’ve written for The Nation, reveals our attitudes about disability and other forms of difference. Still, it’s time to affirmatively support the right to eugenic abortion, even as we fight the need for it. The struggle for disability rights begins with the affirmation that no one gets to tell anyone else what to do with their body. That includes abortion.
Some background is necessary here. Down syndrome is only one of the conditions for which we can test, but it is perhaps the condition around which contemporary opinion is most divided. It’s not a fatal condition (unlike Tay-Sachs, for example), but most people would characterize the disability as significant, though widely varied. With community and educational supports, people with Down syndrome live happy, inclusive, meaningful lives, and there’s data showing that having a sibling or child with Down syndrome strengthens overall familial bonds. At the same time, screening technologies are becoming more accurate and can be used earlier in a pregnancy.
Enter the anti-choice activists and their politics of division and destruction. They can exploit people with Down syndrome (often stereotyped as angelic) to push back reproductive rights. Republicans in North Dakota, Indiana, Louisiana, and now Ohio have successfully shepherded bills banning abortions if the pregnant individual is seeking to terminate due to a prenatal diagnosis. And more of these prohibitions are coming. According to a database of anti-choice laws maintained by the nonprofit publication Rewire, multiple other states are bringing forward bills intended to ban abortion following a prenatal diagnosis of either any genetic anomaly or, as in Ohio, just Down syndrome. Imani Gandy, senior legal analyst for Rewire, told me that anti-choice activists are trying to take “social-justice frameworks and rubrics and then shove their anti-choice framework into that.” She said there’s a similar history of citing feminism as a reason to ban abortion. Now it’s disability rights, which, she said, is not a priority for the bills’ proponents: “Once the child is born, and someone is taking care of a kid with Down syndrome, where are the conservatives? Nowhere to be found.”
Gandy is right. In Ohio, for example, parents of kids with Down syndrome are finding fewer and fewer resources. One parent of a daughter with Down syndrome, columnist Holly Christensen, wrote in the Akron Beacon: “Our statehouse is controlled by the Republican Party and has been for many years. The same legislators who voted to outlaw abortion of fetuses with DS [Down syndrome] also voted this past year to remove language that would have increased funding to county DD [developmental disability] boards.” In an e-mail, Christensen told me that she’s constantly encountering “workers and teachers telling us what they used to provide but no longer can due to budget cuts.” The same story can be found in other states, where GOP-held legislatures are using austerity to shred access to disability services.
So what are parents like me—not to mention other pro-choice allies and self-advocates in the disability community—to do? I put that question to Shain Neumeier, Rebecca Cokley, and Elizabeth Picciuto. Neumeier, who wrote an extremely important essay on the intersections of reproductive and disability rights for NOS Magazine, identifies as an autistic attorney and activist with ectodermal dysplasia. Cokley, the former executive director of the National Council on Disability and now a senior fellow at the Center for American Progress, identifies as a little person, is the mother of two biracial children with dwarfism, and is pregnant with a baby projected to be of average height. Picciuto identifies as neurotypical. She’s a philosopher and mother of a child with multiple disabilities, including cri du chat syndrome.
All three independently said much the same thing: Concern over selective abortion is serious, but placing the autonomy of a pregnant individual over their own body comes first. Not only is it ethically correct, but prioritizing bodily autonomy remains the best path forward to support disability rights.
Neumeier sees the current attempt to deploy disability to restrict reproductive rights in the long context of states asserting the right to disabled people’s reproduction. In the past when the government has claimed this authority, disabled individuals who were disproportionately poor and non-white were forcibly sterilized. It’s with this history in mind that Neumeier wrote in the Nos Magazine piece, “Because the disability community knows the costs of medical coercion, we shouldn’t support, much less work toward, any restriction on reproductive freedom in the name of opposing eugenics, nor should we allow ourselves to be used by anyone who would.”
Over direct message, Neumeier argued, “the ‘pro-life’ crowd of legislators isn’t meaningfully on the side of people with disabilities. They’re not advocating for all the things that prenatal screening could actually help with—e.g., accessing supports and neutral/helpful information in advance of and then after birth.” The laws are really “part of their campaign to restrict bodily autonomy for pregnant people.”
I asked Neumeier how they would respond when people with Down syndrome come out in favor of these anti-choice laws. It’s not a scenario they have encountered personally, Neumeier told me, but the answer is clear. “People with Down syndrome have the total right to decide whether to be pregnant themselves,” they said, “but they [are] no more than anyone else in the position to make a decision about a body that’s not their own.”
Cokley agrees. She told me over the phone, “I think the challenge for any disability community is to really develop cultural bodily autonomy. For the dwarfism community, we’re seeing this with genetic testing and genetic engineering.” It’s not that she rejects the benefits of medicine. She said, “There are symptoms of our dwarfism we’d like to see lessened or treated, but a majority of people with dwarfism aren’t looking for a cure. We see our dwarfism as an intricate part of all who we are.”
She’s had hard conversations with both anti-choice members of her community and folks in the reproductive-rights arena who don’t seem to care about eugenics. To the former, she said, “telling me what I can or can’t do with my body is just as bad as the medical-industrial complex [and its focus on eugenics]. We have the right to abortion. That right is important. People in our community fought for it.”
She said she has to be ready to support someone who chooses to have an abortion after a prenatal diagnosis, but she also said she believes that the reproductive-rights community needs to affirm her right to celebrate dwarfism and to choose whether or not to have kids with dwarfism.
Negotiating conflicting ethical perspectives is complicated, calling for someone with expertise in bioethics, a subject Picciuto teaches at the University of Maryland, Baltimore County. She’s also wondering what this brave new world means for her own choices and her son’s future. Over the phone, she told me that she does, indeed, “have moral qualms for people having abortions for a reason that’s child related, [for a reason] that’s a property of the child.” That said, she’s morally opposed to all kinds of things that she believes should be legal. Abortion belongs to a “category of autonomy and decision making” that supersedes her qualms, she said.
Personhood, for her (and other philosophers, such as Kant), lies in the power to make choices for oneself. Supporting that agency comes first, not only in abortion, but in the whole framework of how to think about disability rights and building a more inclusive society.
Right now, Down syndrome and other genetic anomalies are being politicized as Republicans try to take away autonomy by playing on fears of eugenics. It’s time to defang that threat by affirming that a pregnant individual has the right to make whatever choice they wish to make, under any circumstances. This affirmation serves, rather than works against, the broader campaign for disability rights.
Neumeier knows that Down syndrome is the canary in the coal mine. The ways in which Down syndrome are being politicized are coming to other conditions, especially as well-funded initiatives looking into the genetics of widespread disabilities like autism move forward. Neumeier said, “A lot of us in activism circles are looking at what’s happening in the Down syndrome community and legitimately worrying, ‘when’s that going to be us?’”
This is the moment in which we need to build ties across communities. “Being pro-neurodiversity, anti-eugenics, and pro-choice,” Neumeier said, “it feels like we’re in a race against time to establish through our advocacy that we’re all valuable and deserving of support.” What comes next isn’t knowable, but the GOP anti-choice bills are doing their part to make sure the future unfolds in fear, division, and silence.