In his groundbreaking text Theology and Down Syndrome: Reimagining Disability in Late Modernity, Amos Yong spends two chapters examining the medicalization of disability that began in the middle of the 19th century, especially with the advent of IQ tests, which lend an air of objectivity and authority to classifications of an individual’s “dullness”
Unlike some genetic defects, Down Syndrome is caused by a chromosomal split that is unpredictable and undetectable until after its effects are already in place. For that reason, natal testing is not useful for preventing occurrences of Down Syndrome, but is often used to advocate selective abortions. What is more, many mothers of disabled children explain that in their natal counseling they were led to feel that only bad mothers choose to bring “defective” children into the world. So it’s no surprise that since 1989, 90% of Down Syndrome fetuses have been aborted.
But regardless of one’s position in the pro-life/pro-choice discussion, the practice of selectively aborting on the basis of handicap, specifically Down Syndrome, is highly problematic according to Yong. (By comparison, we can imagine the pro-choice opposition to selectively aborting by gender.) The solution Yong offers is not genetic screening, but to “interrogate our biases, assumptions, attitudes and practices.” The story we are told is that the life of a person with Down Syndrome is not worth living and that the humane thing to do is to prevent their birth. Yong approaches that story with several counterpoints.
- According to Yong, “the ‘suffering’ of people with disabilities stems less from their intellectual and physical impairments than from the social prejudices, environmental inaccessibility, and lack of supportive networks.”
- Those parents who have chosen to raise rather than abort their handicapped children have almost universally affirmed that they themselves have been positively transformed by their decision and have come to see their children as a gift. Yong approvingly quotes Reinders’ 2000 study: “These parents no longer identify with their ‘old’ self. The choice for prevention no longer is a possibility that they find relevant to contemplate.”
- Part of the story we are told is that it would be an unfair burden on society to support intellectually and physically disabled children though their life. Yong responds that this assumes a zero-sum perspective when in reality there is more than enough money for such an expenditure if only we assigned it value.
- Even though trisomy can be detected during pregnancy, the severity of disability remains unknowable until long after birth. There is no basis on which to judge whether the child’s life will be relatively unburdened or whether the child would be “better off never being born.”
- The story also assumes that humans are only instrumentally, rather than intrinsically valuable. Yong quotes Byrne, “It is right to regard cognitive disability in the abstract, in isolation, as negative in value, but it is [also] right to regard the concrete whole of the child (the person) with the disability as of intrinsic, compelling worth.” According to Yong, this argument will gather more compelling force as increasingly sophisticated technology is able to identify previously hidden defects in even our healthiest bodies.
- Additionally, Yong questions what he calls the presumptuousness of believing we can eliminate human disability through abortion. Prenatal testing followed by abortion cannot be the answer to problems that are socially and environmentally caused.
- Finally, there is the problem of the effect of such an implicit condemnation of the personhood of people with Down Syndrome. As one put it, “It certainly doesn’t make us feel very welcome, in the human race.” Indeed, as one confronts many people with Down Syndrome who claim quite intelligibly that they would not want to be “cured” because to be cured would mean to “not be me anymore,” the entire story that it’s better not to be born than to be born with Down Syndrome falls apart.
It is unfortunate but perhaps inevitable that viewing Down Syndrome through a medical mindset has led ultimately to the attempt not to live with the people who have Down Syndrome, but to attempt to “cure the world” of such a condition.
What do you think? Does the general story that it’s unethical to allow your child to be born retarded resonate with you? What do you think of Yong’s counterpoints? Is it a problem than 90% of fetuses with Down Syndrome are aborted? What is the problem we’re trying to solve?