In the 1990’s, I was part of a group of women who wanted to reconcile reproductive choice with disability rights in the then new era of prenatal screening. Some in our group had disabilities such as spina bifida or muscular dystrophy that arose in utero. Others like me had conditions like cerebral palsy that occurred at or after birth but were concerned about ripple effect. Would we all become a new class of illegitimates?
Our consensus was that we should not criticize decisions based on individual circumstances or biases but that we should oppose any medical or social prejudices against disabled persons being in the world. We could accept the personal but not the political. The hope was that the larger population would begin to discuss the complex issues raised by prenatal testing in ways that transcended the abortion debate.[i]
Twenty years later, that hope hasn’t been realized. Prenatal tests have proliferated and the abortion debate has become ever more polarized, with both sides taking the disabled as prisoners. Although abortion based on disability is a small fraction of all abortions, a strategy of abortion opponents is to use selective abortion as a wedge issue from which to attack abortion rights in general. Abortion rights supporters, on the hand, sometimes argue that having an “imperfect baby” is the worst thing that can happen to a woman and so it must never be too late to terminate.
The disability community’s stance that the clinical information a couple is offered after prenatal diagnosis be supplemented by information on how people adapt to the condition was expected to be non-controversial. The abstract medical view of disability tends be dour while the views of multifaceted individuals impacted by disability is more can do. Some prospective parents know quickly after receiving test results what their decision will be. There are others who struggle and who may learn from both perspectives. Unfortunately, the idea has become a political football.
Abortion foes view social information on disability as a cudgel to be used over prospective parents or even a consolation prize for abortion restrictions. Simultaneously, though, conservative right-to lifers are trying to dismantle the Affordable Care Act and defund other programs empowering people to take on unusual family situations.
Abortion rights advocates, for their part, seem suspicious of any information that may suggest that it is reasonable to continue the pregnancy. It is one thing to support abortion as an option. It is another thing to stack the deck in favor of abortion and call it choice.
Not all prenatal testing is related to pregnancy termination. For example, some women have a late stage level 2 ultrasound to determine if the baby has medical issues that would need neonatal treatment. The line between prenatal testing and prenatal care can be blurred. However, the public health impetus for identifying fetal “abnormalities” is to reduce the births of children with disabilities. Herein lays the tension with both full reproductive choice and disability rights.
The late Ruth Hubbard, the first woman tenured professor of biology at Harvard, once wrote, “my problems with amniocentesis stems mostly from my concern about how it is creating eugenic thinking…It moves our focus from the environmental causes of disability which are terrifying and increasing daily to individual genetic ones.” She was prescient. There are indications that women who have a disabled child after opting against tests or after prenatal diagnosis are seen by others as responsible for the condition and so less deserving of society’s aid. Certainly, this is something that should disturb people of good will on both sides of the abortion debate.
It cost $15 million dollars to develop just one of several tests for Down syndrome. The money could have gone for research in dealing the symptoms of Down syndrome so that the huge upward mobility people with Down syndrome have enjoyed in the last 20 years can be matched by like progress in the next 20. More generally, the money could have gone to nutrition programs or reducing childhood lead exposure. Surely, the shifting of resources from minimizing disabilities in people to preventing people with disabilities can be a subject of public discourse without becoming mired in abortion politics.
Perhaps there will be more concern if tests are used to detect traits as opposed to impairments. Yet we may be already there since, except for the medical sense, what is a trait is subjective. Members of the deaf, dwarf and autistic communities are rejecting the disability label. Individuals with intellectual limitation are loudly proclaiming people first. My physical difference is in your face, but its impact on me is purely situational.
The world changed when we acquired the power to pinpoint one characteristic in a potential person, but indistinctly and without context. We can’t roll back the science but we can decide to respond to the issues generated in an aspirational way. Regardless of what can happen in the womb, how do we make sure that people are treated equally from birth and that no one has the merits of their existence second guessed? How can people who make opposite decisions about the composition of their families get along? How do we align health policy so that it nods to privacy and to diversity? Our answers to these and other weighty questions will show whether, even in these desperate, partisan times, we are just and indeed extraordinary as a nation.
Lisa Blumberg is a freelance writer from West Hartford.