Community Essay : Genetic Screening: ‘Who Judges What Life Is Worth?’ : Now that more disabilities can be detected in the womb, we have to think about the difference between medicine and eugenics.
Rarely have I felt my life to be so devalued as when I attended a workshop in Irvine with experts in genetic diagnosis, testing and screening services. I have had cerebral palsy from birth, so I am nor a rookie or wilting flower when it comes to oppressive attitudes toward people with disabilities. So why did I feel so overwhelmed at this conference? Because this struck at my core--my own right to exist in this world.
Genetic prenatal screening, originally restricted by the medical profession to the detection of severe “defects,” has become a search-and-destroy mission for those who can afford it, offering the chance for parents to abort any “abnormal” fetus or even a fetus of an unwanted sex. Even those states that restrict such abortions allow them in the case of a “severe” or “grave” defect in the fetus. Although I remain pro-choice, there is an affront to my own worth when fetuses are valued for the degree of their physical or mental acceptability. Who judges what a potential life is worth?
Although the workshop presented an array of professionals who talked of the ethics of screening decisions, there was not one disabled person originally on the committee. It was generally agreed that serious chromosome abnormalities such as Down’s Syndrome and Tay-Sachs were targets for abortion. Other diseases under discussion were anencephaly, sickle cell anemia and spina bifida. But whatever guidelines the “experts” deem appropriate, individuals will make the final decisions, influenced by subtle societal pressures.
Now that physicians can diagnose a disability in the womb, there is much societal pressure to have a “perfect” baby, which further stigmatizes an infant who does have a disability. Mothers still bear most of the responsibility for raising children, and there is little in the way of in-home support services for children with disabilities. Women do not want--or can’t afford--to sacrifice their careers and return home full-time to care for children with disabilities. In an era where social support systems are being literally wiped out by budget cuts and with health costs still soaring, the costs associated with raising a child with a disability appear larger than life. And it is likely that in the future, insurance companies will consider a genetically diagnosed prenatal disability a “pre-existent” condition and refuse to cover the infant at all.
One day while in my physical therapist’s gym, I heard a young woman talking with one of the therapists about her failed attempts at finding a baby to adopt. She was casually complaining to the therapist that the only baby she had been offered was an infant with a club foot. The therapist tried to explain to her that this was a fairly simple matter to handle, but the young woman insisted that she did not feel that she could financially or emotionally cope with that sort of “problem.”
Anti-disability sentiment was expressed publicly when CBS anchor Bree Walker was openly attacked on KFI radio for electing to have her baby last year, despite a good chance that it would inherit her disability. The question posed was: Should Bree Walker have conceived a child? Talk show host Jane Norris asked her audience, “Is that a fair thing to do? Is it fair for Bree Walker to deliver this child?” Since Walker has the genetic disability (a fusing of the bones in her hands), hers was an informed choice. The public attack against her for making this choice exposed the deep fear, anxiety and misunderstanding of disability in our culture.
We need to ask what kind of a society creates parents who feel that having a child with a disability is not an option for them? What kind of a culture views disability as a burden placed on society, stigmatizing children who happen to have a disability?
In the 1940s, Nazi Germany, with the agreement of highly regarded German physicians, built its first gas chambers in mental institutions to eliminate the mentally retarded. German social policy sought to rectify the disorderliness of nature, to relieve the state and the family of the burden of caring for the unproductive. The killing later spread to the physically disabled, schizophrenics, manic-depressives, alcoholics and other socially “undesirable” folks--an eventual total of 250,000 children and adults in this category. How many “defects” will genetic prenatal screening eventually deem fatal?
Let us not confuse the prevention of a disease with the elimination of one through the practice of eugenics. These parents choosing abortion rarely think of their actions as partaking in eugenics--a social and economic theory that calls for “perfecting” the human gene pool by eliminating “defective” offspring--but in effect they are.
My mother had German measles in her first trimester, which was believed to have caused my cerebral palsy. My parents could have chosen to eliminate me had prenatal screening been available in the 1950s. It is ironic that when people with disabilities now have federal laws to protect them against discrimination in the workplace and in our environment (Americans with Disabilities Act), that there will be fewer and fewer of us to make use of the victory many of us have waged our entire lives to win--the right to equality in the eyes of the nation.
Progressive science has brought us many positive benefits. Undoubtedly, human genome research will add to those benefits. But people with disabilities must be alert and active participants in the debate about and oversight of this growing research.
