Bioethics Forum Essay
The End of Roe v. Wade Will Be a Nightmare for Disabled Americans
The end of federal abortion rights is a disability justice issue—but not in the way you might think.
Historically, debates over reproductive autonomy have produced some strange bedfellows when it comes to disability. Anti-abortion policymakers and advocates often appeal to the value of disabled lives when they promote legislation that prohibits abortion on the basis of fetal anomalies, co-opting the commonly held disability-rights position that such abortions are morally problematic.
Though what gets called “the disability community” is nothing if not heterogeneous, even those who support abortion rights often have concerns about certain elements of reproductive choice, such as the dwindling of newborns with Down syndrome in countries with widespread prenatal genetic testing. It would be easy to think that there is a conflict between valuing disabled life and demanding full reproductive autonomy, but this would be a mistake. The calculus changes if we acknowledge the simple fact that disabled people have sex—and, yes, get pregnant—a fact that would no doubt make some lawmakers’ heads explode.
As a disabled scholar who thinks a lot about disability ethics and health care, I can’t help but notice that the debate over fetal anomalies doesn’t capture the full set of concerns that I share with disabled friends of so-called childbearing age. That’s because it only considers abortion through one limited, if still important, lens: prospective parents’ choice of whether or not to have children with disabilities. These prospective parents are generally presumed to be nondisabled, or at least their own disability status does not enter into their considerations about whether or not they could care for a disabled child. The anti-abortion right’s singular focus on disabled fetuses appropriates disability advocates’ real concerns about eugenics while, ironically, dismissing the possibility that disabled people can or should become pregnant.
Given that people with disabilities are now estimated to make up more than a quarter of the U.S. population and abortion will now be banned in about half of the U.S. states, we are far past due for a reckoning with what reproductive justice requires for disabled people. For many of us, it means affordable, accessible, and safe abortions—whether or not we want children.
Disability is as varied as the human condition, and many disabled people build thriving biological families that flout ableist assumptions about who can be a parent. At the same time, certain disabilities and chronic conditions can make pregnancy extremely high-risk and physically torturous in ways that restrictive state laws tend to disregard. As clinical ethicist Michele DeMarco has written, a person with a cardiac condition could be told that pregnancy would be “tantamount to suicide” and still not necessarily qualify for an abortion under the new wave of anti-abortion legislation and trigger laws that will now take effect in 13 states. The language of these laws is so vague that doctors will undoubtedly avoid abortions that are not “immediate” emergencies out of fear of lawsuits or prosecution.
It is not hard to imagine how this hesitancy could harm people living with all kinds of chronic illnesses and disabilities. Some people with psychiatric disabilities might fear a relapse of crisis-causing symptoms as a result of the medication changes and hormonal fluctuations that accompany pregnancy. Some of the 1 in 4 diabetics who are forced to ration their insulin, making it difficult to keep their blood sugar in the range recommended for pregnancy, might fear that being pregnant would exacerbate kidney disease and neuropathy, which they already contend with. But even if people in abortion-restricted states fear for their lives with these risks, they likely would not be able to end their pregnancy until their life was acutely under threat. The fact that the physical stress of a pregnancy could take years off a chronically ill person’s life would be of little to no consequence under Mississippi’s abortion law, for example, which contains a “life of the mother” exception only in the case of a “medical emergency” that “necessitate[s] the immediate performance or inducement of an abortion.”
While it is still possible, if not easy, to get a hold of medication abortion even within states with abortion bans, not everyone can take these pills: they are contraindicated for people with certain liver, kidney, and inflammatory conditions, and due to the need for self-monitoring and adherence to care instructions they are not recommended for some people with comprehension barriers.
It might be tempting to take comfort in the notion that people can leave their state to get an abortion if they really need one. But this option will exist only for those who are well enough to travel, and who can afford the transportation and time off work that it takes to cross state lines for a medical procedure. Disabled people live in poverty at twice the rate of nondisabled people, and many are prohibited from accumulating savings due to the punishing asset limits on those who receive Supplemental Security Income.
Even if one can afford to travel, doing so can be dangerous and inaccessible for people who rely on durable medical equipment. On average, airlines break or lose 29 wheelchairs a day, leaving the people who need them immobilized and reliant on inadequate alternatives while they await reimbursement. Last year, disability activist Engracia Figueroa died from complications of sores she developed as a result of United Airlines having broken her $30,000 wheelchair. Entrusting life-sustaining equipment to careless corporations can be as much of a gamble as a high-risk pregnancy.
Meanwhile, even if a person does make it off a plane without incident, finding an accessible medical facility is a challenge of its own. Despite the Americans with Disabilities Act’s requirement that health facilities provide reasonable accommodations for disabled patients, many lack basic accessible equipment like adjustable exam tables. Moreover, disabled people often encounter stigmatizing assumptions and attitudes from medical professionals who assume they are either sexually inactive or hypersexual. The continued shrinking of abortion provider networks will make it harder for pregnant people with disabilities to find providers who can meet their needs and treat them with respect—particularly as they are forced to look outside their local communities, where word of mouth can provide important information about a provider’s accessibility and attitudes.
Of course, abortion restrictions do not only endanger people who don’t wish to be pregnant. Many people who want biological children also have conditions that put them at higher risk of adverse outcomes and miscarriage, such as intellectual and developmental disabilities, thyroid disorders, hormonal conditions, and diabetes. Because the medications and surgeries used to end miscarriages are identical to those used in abortions, doctors in countries with abortion bans are often afraid to treat miscarriages and force pregnant people to carry an unviable fetus. This poses clear psychological risks as well as physical ones, as evidenced by the deaths of women in Ireland, Italy, and Poland who developed sepsis after being denied treatment for a miscarriage.
This lack of accessible gynecological care will disproportionately imperil those whose illnesses and disabilities put them at greater risk of miscarriage—especially if they are marginalized in other ways. Racialized health disparities mean that Black women have a higher likelihood of miscarriage than white women, while Black people in general are more likely to be disabled. Access to safe and timely miscarriage care is therefore a matter of intersectional disability justice. If a goal of anti-abortion legislation is to preserve disabled lives, then it makes little sense to endanger the lives of disabled people who want to have children.
An especially horrific outcome of the end of federal abortion protections is the fact that, in many states, people who miscarry or have stillbirths will be vulnerable to prosecution. Law enforcement already targets people whose miscarriages they allege were linked to drug use, overwhelmingly charging women of color. I shudder to imagine how this practice might intersect with the inevitable increase of disabled people forced into pregnancies despite the fact that they rely on medications whose effects on fetuses are understudied or have been shown to pose risks.
For the past 30 years, disability activism has been guided by the slogan, “Nothing about us without us.” When the conversation around disability and abortion is constrained to the interests of fetuses, that “us” is conveniently constrained to entities that can’t participate in the debate. And so, when anti-abortion lawmakers cynically adopt disability critiques to restrict access to abortion, they neglect the diverse needs and desires of disabled people, many of whom object to yet another impingement on our bodily autonomy after decades of fighting for self-determination. People with all kinds of disabilities should have the right to make families however we choose, which means not facing stigma for wanting to have children, being adequately supported through high-risk pregnancies, being taken seriously about our own risk assessments, and having equal access to the providers and procedures we need to remain safe.
It’s easy enough to profess to care about disabled lives in utero. But it’s time to start listening to us about what we need outside the womb.
Liz Bowen, PhD, is the Rice Family Fellow in Bioethics and the Humanities at The Hastings Center. @lizbowhunter