My public health work took root in the pro-choice movement for reproductive rights. My earliest activism championed reproductive autonomy, centering on legal access to abortion as a feminist fight for gender equality. I trained and practiced as a family planning counselor, helping people name their reproductive life goals and provide services and care that aligned with their lived values. This work is necessary, and I stand by much of it. However, recent events, ranging from the ongoing COVID-19 pandemic, to my own health journey leading to my personal discovery of disability justice, have led me to critically examine this conception of ‘choice’ in pro-choice. When choice is informed, shaped, and guided by violent power structures such as ableism or the patriarchy, to what extent is it really choice at all?
As political attacks on both reproductive health care and disability rights worsen, and as the application of reproductive technologies like prenatal genetic testing and selective abortion proliferate, it is paramount that public health conceive of disability justice and reproductive justice as inseparable struggles. To truly achieve reproductive justice, public health must reimagine care to value all bodies, minds, and futures. Analyzing the role of public health practices, like reproductive counseling, in the phenomenon of disability selective abortion, is one place to start. I am interested in how a critical feminist disability framework can guide public health’s pro-choice centric movement toward a more critical and nuanced understanding of what ‘choice’ entails in the context of disabled futures.
Prenatal genetic screening and the pregnancy decision-making that accompanies it have been subsumed by public health in conspicuous ways. For instance, since the 1990s, the California Department of Public Health (CDPH) has administered a Genetic Disease Screening Program that requires all Medi-Cal and private insurance plans in the state to cover blood sample-based prenatal genetic screening and indicated follow-up care. Theoretically, all pregnant people in California undergoing prenatal care receive information about and have the option to undergo screening for potentially disabling conditions in a fetus, including Down syndrome, spina bifida, Turner syndrome, and others. When these genetic conditions are identified, the program also facilitates further diagnostic testing and, notably, education, most often performed by genetic counselors, around the diagnosis and available options, including abortion. CDPH also manages licensure for genetic counselors, meaning that the training these professionals receive is a public health function and responsibility. In other words, public health is in a powerful position to shape how counselors educate, and ultimately what prospective parents learn about disability.
How disability is discussed by healthcare professionals matters. How public health systems frame the use of reproductive technologies matters. Few case studies demonstrate the power of framing more potently than the near-eradication of Down syndrome in Iceland. Iceland’s almost 100% rate of prenatal genetic screening and subsequent selective abortion in cases where Trisomy 21 is identified have caused the Down syndrome population in the country to dwindle. This has largely been shared as a cause for celebration and as a victory for public health interventions. I contend that a justice-centered approach to public health must be extremely wary of such efforts to eliminate disability in the name of alleged progress. To understand why, we must look to the legacy of eugenics.
What counts as disability, what life is like for disabled communities, and how society responds to disability has long been shaped by oppressive institutions. The eugenics movement represents a particularly potent example of how power interests dictate what disability is and how to respond, and is contextually relevant to a critical discussion of disability selective abortion. Eugenics refers to the practice of shaping human reproduction that amplifies traits deemed desirable, and/or eliminates traits deemed undesirable. While eugenicist practices have not disappeared, it is said that eugenics peaked as an organized movement in the United States during the 20th century, when roughly 70,000 Americans were forcibly sterilized with support from the federal government. It is crucial to note here that the eugenics movement was a public health project. The state acted in its public health capacity to reduce transmission and prevalence of “undesirable” outcomes using sterilization, drawing similarities to the way public health entities today are charged with reducing rates of disease using vaccine campaigns or public education. Deafness, blindness, chronic illness, poverty, as well as certain behaviors deemed “criminal” or even “sexually promiscuous,” were used to justify non-consensual sterilization, predicated on the assumption that these traits were hereditary and that society would be “healthier” without them. The parallels between these 20th century sterilization programs and similarly systematic, present-day innovations to reduce incidence of disability raise questions about whether the application of reproductive technology and abortion in the case of disability comprise a ‘new eugenics.’
Critical disability studies, a field that questions widely held assumptions and narratives about “normal” human functioning, offer a lens through which to navigate this question. Scholars like Anita Silvers, Chloe Burke, and Christopher Castaneda have pointed out the dangerous possibilities that arise when disabled people are stripped of the power to define their lives in their own terms. Science and medicine are not truly objective measures–critical disability theory posits that institutional power structures undeniably construct our so-called facts of health and quality of life. Public health and medicine are both influenced by, and actively influencing, harmful framing and misguided perceptions about disability, which are further reified and entrenched by our ableist society. When healthcare professionals consult on the outlook of life with a disability (such as in the context of counseling following a prenatal diagnosis), research and lived experience overwhelmingly show that they describe disability very negatively, despite the fact that people living with those same disabilities describe their own lives as happy, rich, and fulfilling.
This raises several important questions: to what degree is disability selective abortion decision-making shaped by ableist narratives that dominate our society and are echoed by practitioners in positions of power? Why is our culture seemingly committed to disabled life as tragic, potentially to the point of not worth living, even when disabled people are telling us otherwise? What messages about disability continue to be publicized when healthcare workers depict abortion as the clear right choice in cases of fetal diagnosis, or when public health systems treat declining disabled populations via abortion as unilaterally positive? As these ableist narratives help build a norm that disability is totally and obviously undesirable, what happens to the potential to make a personal choice on whether to birth disabled children?
Critical disability studies alongside critical feminist theory present many challenges to some of the mainstream reproductive rights movement’s most reliable talking points. Equipped with structural critiques, analyses of power, and questioning of social assumptions, these frameworks can be a guiding tool for public health work that aims to confront both ableism and reproductive control in achieving reproductive justice. Grappling with how oppression, including ableism, manifests in healthcare spaces, including abortion care, does not denigrate the hard political work it took to make that care available. In fact, it is part and parcel of developing the structural-level analysis that rigorous public health work demands.
Furthermore, critical disability and certain critical feminist perspectives actually converge around the struggle for reproductive freedom in some pretty striking ways. For instance, critical feminism-aligned works like Knight and Miller’s 2023 book Prenatal Genetic Testing, Abortion, and Disability Justice question whether the ‘choice’ behind disability selective abortion is really a choice at all, considering the financial, logistical, and discriminatory struggles that come along with raising a disabled child, or simply existing as a disabled person, in an ableist world. Considering that the eugenics movement was also a campaign against impoverished communities, the idea that a person’s ‘choice’ to abort—which can be significantly shaped by socially constructed and maintained conditions of poverty—is the only morally correct choice is in fact, a eugenicist judgement. Dominant social pressures tell prospective parents (disproportionately mothers) that choosing to bring a child into their lives knowing that they may not have the financial means to support that child is an irresponsible moral failing. Yet, the government, which I argue chooses to keep certain demographics in poverty, escapes that same criticism. This double standard should spark worry about the possibility that expanded use of reproductive technologies may actually further place the responsibility and moral judgement on pregnant people and most often, women, rather than offering a truly free choice reproductive justice advocates are meant to be working towards.
In other words, the decision to not bring a disabled child into the world does not happen in a vacuum, it happens in the context of ableism, misogyny, and additional forms of oppression deeply rooted in our culture shaped by the individualist values of neoliberalism and racial capitalism. The ‘choice’ framework may turn too much of our attention toward individual parents at the expense of examining the oppressive social conditions that calculate their decisions.
This is why a critical feminist disability framework in public health, especially in the reproductive health realm, could transform our field’s potential to uplift meaningful justice. Integrating critical perspectives into the professional training that genetic counselors, reproductive health educators, doctors, and nurses receive is one way to target bias and discrimination. Additionally, professional education around disability must be co-created with disabled communities in order to ensure that the range of life with a disability can be accurately and fairly discussed during reproductive counseling.
An overarching cultural shift is also needed within public health. Anyone who provides reproductive counseling should be prepared to offer a fuller picture of being disabled without resorting to ableist notions of health and quality of life. Whether that looks like advocating for more resources for disabled people and their caregivers, defending legal access to contraception and abortion for anyone who needs it, or intentionally changing the ways we frame disability in our professional and personal lives, public health workers are uniquely positioned to revolutionize the reproductive health landscape. Disability justice requires we value all lives, and reproductive justice demands that people have real choices free of constriction and coercion. Therefore, public health has a responsibility to work towards making these interests meet and become a reality for all future families.
Authored by Elisa Natalia Borgsdorf
Elisa Natalia Borgsdorf is a queer and disabled Chilean-American committed to disability and reproductive justice in her roles as health educator, advocate, and friend. Her close and personal venture into disability justice spaces has helped her bring a necessary critical outlook to the work she does with patients, providers, and community in the reproductive health world.
