After years of failing to conceive, my first pregnancy was an occasion for celebration, but it brought with it many difficult choices. As with most women who are of “advanced maternal age” and have a chronic illness, I was offered genetic testing early on in my pregnancy. A simple cell-free fetal DNA test in my first trimester could show me signs of Down syndrome, Trisomy 18 or 13, as well as increased chances for other chromosomal anomalies. Given the option, I was forced to consider whether or not it was prudent to get prenatal screenings when they were offered. As a clinical ethicist and theological bioethicist, I know that the medical community, along with many Christian denominations, considers these prenatal screenings, along with other reproductive technologies, as implicit goods, or even “a wondrous gift.” At the same time, as a disability advocate I know that genetic screenings are often linked to ableist fears of disability as well as a long history of disability stigma. As a Christian, I believe that my understanding of, and care for, people with disabilities ought to reflect God’s own embrace of dependence and vulnerability in the incarnation. Whereas our contemporary culture tends to devalue persons with disabilities, Christ’s body and ministry compel me to reconsider what makes life truly valuable.
The rise of reproductive technology carries with it the dark shadow of eugenics. Margaret Sanger, who opened the first birth control clinic in the United States, is often applauded as a champion of women’s reproductive rights. But she was also an outspoken champion of eugenics who believed the “over-fertility of the mentally and physically defective” was one of the most urgent problems of the early twentieth century. Thanks to eugenics enthusiasts, the US Supreme Court, and the endorsement of most mainline Protestant churches, around 70,000 Americans were forcibly sterilized for the sake of gene pool strengthening and societal improvement.
Today, reproductive and genetic medicine has attempted to escape its eugenic legacy by emphasizing the role of autonomy in freely choosing to use (or not use) reproductive technologies. For many, coerced sterilization was the true crime of eugenics, because it took away reproductive choices. The United States government no longer condones forced sterilization and women such as myself can choose whether or not to have prenatal screenings, select embryos using preimplantation genetic diagnosis (PGD), or turn to selective abortion if a fetus is shown to have a genetic anomaly. One day, couples may even have the choice to use technologies such as CRISPR to edit genetic anomalies out their embryos.
Beneath the rhetoric of “choice,” however, remains the implicit assumption that life with a disability is a burden. Implicit in the development and implementation of prenatal screenings is the idea that preventing the births of children with disabilities is good, or at least desirable for many women. Disability theorists question whether the choices offered in genetic testing and prenatal screenings are truly free when the bias against disability is so strong in our society. Parents who are contemplating genetic testing, PGD, or selective abortion are rarely given information about what it is like to live with disability and the implications disability has on a person’s quality of life. This reality, combined with the documented bias of health care professionals against disability, evidence of structural ableism within medicine, and the preference clinicians have for genetic testing, creates an environment in which the “choice” for genetic testing and abortion is constrained. Many parents feel pressured into genetic screenings and selective abortion and some bioethicists have even argued it is morally irresponsible for parents to refuse genetic testing. Unfortunately, the eugenic impulse to rid our communities of lives deemed not worth living has not vanished simply because we no longer practice forced sterilization.
Disability advocates have long worried that prenatal screenings increase bias against persons with disabilities. Some of the first concerns were raised by parents of children with Down syndrome, who believed (and continue to believe) prenatal testing leads to increased abortions and social stigma as well as fewer public health services for individuals with Down syndrome. Despite reports of high levels of life satisfaction from people with Down syndrome and their parents, screening for Down syndrome and selective abortion continues to be common in the United states, both because Down syndrome is fairly easy to detect in utero and because it is still widely considered an undesirable defect. James Watson, pioneer of the Human Genome Project, once remarked that couples would have to be crazy to say they wanted a child with Down syndrome.
Fear and stigma surround disability, leading many parents to question whether they want to continue a pregnancy after the detection of a genetic anomaly or whether it would be better to selectively abort. Even though disability advocates hold various positions on abortion, many believe the prevalent use of and push for genetic technologies sends a message that it is better to be dead than disabled, or at least that disabilities are unwelcome in our society. This argument, dubbed the “expressivist argument,” has been contentious, even among disability scholars, because it assumes motives that might not exist for couples contemplating their reproductive options. Yet, even if parents are not consciously devaluing the lives of persons with disabilities, it is hard to see how persons with disabilities can be valued if we promote the belief that it would be better if they were not born.
Attention to and care for the vulnerable and stigmatized is (or at least ought to be) a Christian priority. There are compelling reasons to believe that the use of reproductive technologies can be the morally correct choice for Christians, particularly those who wish to prevent their future children from immense suffering. When considering their use to prevent disability, however, Christians ought to consider whether their choice is influenced by disability prejudice. Convenience can sometimes disguise itself as compassion. Only by first appreciating and honoring the lives of persons with disabilities can we make moral choices about preventing disability in the future.
Contemporary forms of ableism, which lead us to devalue disabled lives, are easily bolstered by our modern Western values. Rationality, independence, and self-sufficiency, are often understood to be the most important capacities we hold. Some would even argue they characterize us as human beings. Such values appear to cut across the political spectrum. Whether or not we are pro-choice or pro-life, however, there is reason to uphold the dignity and value of persons with disabilities. Within the Christian narrative, alternative values to those held by our modern culture are embraced. As created creatures, we are wholly dependent on a gracious and loving God. Dependency on God and one another marks our lives from the very beginning. Similarly, we are created as vulnerable creatures, reliant on one another for our very existence and subject to the contingencies of embodied life. We were not created to be invincible. Our limits are not evil or bad; they are part of our created nature. These are qualities we share with Jesus. God became incarnate to show us what it means to be truly human. With Christ as our norm, we recognize our lives are not best categorized as radical independence but dependent mutuality, reliant upon the incarnate body that became vulnerable to save us.
Persons with disabilities, therefore, are not exceptional cases of being human, but normal expressions of personhood. Moreover, persons with disabilities remind the Christian community who we all are: beings who are wholly dependent. We depend on God for all we are and have and we rely upon one another to make it through life. Given our shared vulnerable state, Christians should affirm that life with a disability is a life worth living. Any proposal that life with a disability is less dignified or less deserving of care must be rejected. As we consider bringing new life into the world, we must be attentive to what we understand as the value of human life and the ways in which our Christian values may deviate from the values of our contemporary culture.
Once we acknowledge that all persons share the same vulnerable, dependent state, it becomes more difficult to locate what is exactly bad or defective about disability and why preventing disability appears to be an unqualified good in modern medicine. Although autonomy and free choice are now hallmarks of reproductive medicine, Christians should affirm that our lives are not good because we chose them or because we have an abundance of choice, but because they were given by a good God. The goodness of life in Christian theology does not turn on the “quality” of one’s life as defined by medicine, but on our ability to receive life as a good gift from God, regardless of our circumstances.
Valuing disabled lives will not resolve all the ethical dilemmas presented within reproductive technologies aimed at preventing disability, but it is a necessary starting point for Christians who believe life is a gift from God. Affirming that those with disabilities are persons with dignity may help to eradicate the stigma and ableism that pervades much of our society and influences the choices couples face when determining whether or not to use reproductive technologies aimed at preventing disability. Theological accounts of personhood as a gift can challenge the dominant narratives of modern liberalism, which position persons with disabilities as pathological objects that must be remedied through technology. Before Christians look to heal or fix what they deem to be undesirable in individuals, they must first understand what persons with disabilities bring to the community.
Image credit: Darian Goldin Stahl. Field Notes: How to Be With (Artist’s Book detail), Encaustic transfer and silkscreen on silk, 8″ round, 2020. Image courtesy of the artist, www.dariangoldinstahl.com.