De Facto Eugenics

I begin my blog post today with a lengthy quote from Andrew Solomon’s book Far From the Tree: 

 

“When I was in college in the mid-1980s, it was common practice to speak of the “differently abled” rather than the “disabled.” We joked about the “differently gruntled” and the “differently agreeable.” These days, if you talk about an autistic child, he differs from “typical” children, while a dwarf differs from “average” people. You are never to use the word normal, and you are certainly never to use the word abnormal. In the vast literature about disability rights, scholars stress the separation between impairment, the organic consequence of a condition, and disability, the result of social context. Being unable to move your legs, for example, is an impairment, but being unable to enter the public library is a disability.

An extreme version of the social model of disability is summarized by the British academic Michael Oliver: “Disability has nothing to do with the body, it is a consequence of social oppression.” This is untrue, even specious, but it contains a valid challenge to revise the prevalent opposite assumption that disability resides entirely in the mind or body of the disabled person. Ability is a tyranny of the majority. If most people could flap their arms and fly, the inability to do so would be a disability. If most people were geniuses, those of moderate intelligence would be disastrously disadvantaged. There is no ontological truth enshrined in what we think of as good health; it is merely a convention, one that has been strikingly inflated in the past century. In 1912, an American who lived until the age of fifty-five had had a good, long life; now, death at fifty-five is considered a tragedy. Because most people can walk, being unable to walk is a disability; so is being unable to hear; and so is being unable to decipher social cues. It’s a matter of votes, and the disabled question these majority decisions.

Medical advances allow parents to avoid producing certain kinds of disabled children; many disabilities may be ameliorated. It is not easy to determine when to exploit these options. Ruth Hubbard, an emerita professor of biology at Harvard, maintains that expectant parents who test for Huntington’s because they have a family history of the disease are in a quandary: “If they decide on abortion, they are as much as saying that a life lived in the knowledge that one will eventually die of Huntington’s disease is not worth living. What does that say about their own life and the lives of their family members who now know that they have the gene for Huntington’s disease?” The philosopher Philip Kitcher has referred to genetic screening as “laissez-faire eugenics.” Marsha Saxton, a lecturer at Berkeley who has spina bifida, writes, “Those of us with screenable conditions represent living adult fetuses that didn’t get aborted. Our resistance to the systematic abortion of ‘our young’ is a challenge to the ‘nonhumanness,’ the nonstatus of the fetus.” Snyder and Mitchell speak of how the elimination of disability marks “the completion of modernity as a cultural project.”

Some in the disability rights camp urge acceptance of whatever child you conceive, as though it were immoral not to conform to reproductive destiny. This is what the bioethicist William Ruddick calls the “‘hospitality’ view of women,” which finds anyone who terminates a pregnancy nonmaternal, ungenerous, and unwelcoming. In fact, prospective parents are dealing in the abstract with something that could become tangible, and that’s never an informed way to make a choice: the idea of a child or a disability is extremely different from the reality.

There is a problematic collision between feminism’s prioritizing of legal abortion and the disability rights movement’s opposition to any social system that devalues difference. “The fears are genuine, rational, and terrifying,” the disability activist Laura Hershey wrote. “We all face the prospect that what is supposed to be a private decision–the termination of a pregnancy–might become the first step in a campaign to eliminate people with disabilities.” She may be naïve about the motive, but correct about the result. Most Chinese people don’t hate girls, and no one in China is pursuing a campaign to eliminate women. But couples have been legally limited to one child since 1978, and because many prefer a boy, they give the girls up for adoption or abandon them. Although prospective parents may not be out to eliminate people with disabilities, medical advances giving them the ability to make radical decisions could undoubtedly reduce the disabled population considerably. “In this liberal and individualistic society, there may be no need for eugenic legislation,” Hubbard wrote. “Physicians and scientists need merely provide the techniques that make individual women, and parents, responsible for implementing the society’s prejudices by choice.”

**

What interests me about the passage above is Solomon’s naive belief that decisions about giving birth to children with disabilities are in reality–well–”decisions” for in fact hospitals, physicians, “hospitalists” and yes, even nurses routinely prescribe abortion for women whose genetic tests promise a likelihood of having a child with disabilities. Prescriptive abortion is the “norm” and is generally presented as the only option. There is indeed “no need for eugenic legislation” in our current health care system. 

 

I was talking two nights ago with a bio-ethicist who told me some hair raising stories of parents who, imagining they had a choice–that they in fact could have a child with Down Syndrome–were abruptly given the “heave ho” from a rather famous New York City hospital. The slogan on the hospital’s door ought to be: “No crippled babies delivered here.” 

What Solomon gets wrong is that radical decisions have already been made. 

**

 

Talking with the aforementioned bio-ethicist it was interesting to learn that anyone can appoint himself a bio-ethicist. Worse yet, the clear majority of academics advertising themselves under this banner are philosophers. Given that philosophy is not famously diverse within university culture, one wonders about the cultural competency of bio-ethicists. 

 

**

One wonders many things when thinking about disability and culture. I imagine that for Solomon analogies between gender selection in China and neo-natal disability discrimination in the US are apt, but in fact, the assignment of value along a bell curve of normativity is more sinister than such an analogy may afford. Value is economic. Bio-ethics is driven by utilitarian philosophy–that which provides the greatest value to the greatest number of people is to be promoted. There’s really not much of a step from Peter Singer’s opposition to baby’s with disabilities and Hitler’s characterization of the disabled as “useless eaters”. 

 

My own view is culture is far more accepting of difference than utilitarian assignments of value suggest but even so, there’s a lot of de-facto eugenics taking place right now in thousands of hospitals across the country.