Respect for reproductive choice — and my son's dignity
By Constance Phelps
Jun 07, 2019 | 6:00 AM
Recently, in Box v. Planned Parenthood of Indiana and Kansas, the U.S. Supreme Court avoided considering the constitutionality of an Indiana law banning abortions due to the race, gender or potential disabilities of the fetus. In a concurring opinion, Justice Clarence Thomas asserted that Indiana did have a “compelling interest in preventing abortion from becoming a tool of modern-day eugenics.”
Justice Thomas ignored the parallel issue of state control over a woman’s body present in both 20th century American eugenics and in today’s anti-abortion movement. But the howls of protest his opinion has drawn also ignore the fact that you don’t have to be a right-wing ideologue to be concerned about the possible connections between genetic testing and anti-disability prejudices.
At a conference at Harvard’s Petrie-Flom Center in 2018, Emory University Law Professor Ani Santz did a presentation called “Health care as Eugenics.” She explained that our reflexive health care philosophy in regard to disability is dominated by “a normalizing push that will make people function in a way that is typical, or as most people function. If we are to proceed in this manner, it needs to be a broader social choice … because of the very negative effects it has for individuals with disabilities. In the legal context it may mean that some people are not born.”
My son Nick has a “macrodeletion” of nine genes, the absence of which cause his autism, epilepsy and mild cognitive impairment. His type of epilepsy is called Lennox-Gastaut Syndrome, or LGS. If Nick had been tested in utero or pre-implantation with today’s tools and knowledge, he would have produced a neon warning sign. But Nick is funny, loving, a sports enthusiast and interested in the world and current events. He loves dogs and is about to start a vocational program to get a dog-walking certificate. There are also many things he may never be able to do for himself – including living on his own. For all its glare, that neon sign wouldn’t have told me much of anything about what our lives together would be like.
Former Harvard Neurologist William G. Lennox, who co-discovered LGS and pioneered the use of the EEG technology that allowed Nick to be correctly diagnosed, so fully embraced the concept of genes as destiny that he was both a proud eugenicist and member of the American Euthanasia Society. In a 1938 article entitled “Should They Live?” Dr. Lennox explained that “selection of the congenitally and hopelessly mindless for elimination would offer no more difficulties than their selection for lifelong incarceration. A court-appointed medical committee would be sufficient.”
Lennox was on the very extreme end of American eugenics. But the movement swept up scientists, doctors, intellectuals, politicians, philanthropists and many regular folk during the first half of the 20th century. It was based on the idea that humanity could be vastly improved if “feeblemindedness,” epilepsy and other conditions could be weaned out by preventing those who exhibited them from them from having children. Inevitably, American eugenics subsumed all our other ingrained bigotries. Before the eugenicists were done, they had forcibly sterilized 64,000 Americans. How many of these biases remain in our collective unconscious?
Some genetic conditions may cause pain and hardship on the individual or family that will be unbearable; many can be integrated into a meaningful life. Genetic tests are tools to be used to inform thoughtful, private decisions. The best way to responsibly curb bias-based genetic selection is to reduce societal fears about disabilities, and increase supports to those living with them. It is an arena too complex to be controlled through blanket laws.
If Dr. William Lennox is Nick’s morally challenged medical benefactor, his great-grandfather, former Supreme Court Justice William J. Brennan, is his ideological protector and guide.
Brennan wrote in School Board of Nassau County, Fla. v. Arline (1987): “Society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” At the decision’s core is the need to acknowledge common discrimination around disease and disability — and examine our motivations, our actions and our logic in light of that stigma.
Brennan ardently supported reproductive choice, based in part on protection against undue government intrusion into our personal choices. He also promoted practices that would safeguard the quality of life of groups considered a societal liability by the mainstream. He was able to hold those values together in one palm of compassion, reflection and respect for human dignity, and we can too.