A reader, Molly, replied to the three posts on Down Syndrome by Andrew Solomon:
“Fascinating article. Extremely conspicuous in its absence is the uncomfortable fact that just over 90% of babies with Down Syndrome are aborted due in part to overwhelming pressure by the medical community. It would seem eugenics has not been discredited as thoroughly as the author would have us believe. I find it truly amazing that he indicts former generations for their barbaric treatment of disabled people and then completely ignores what has become common practice in our time. The medical community routinely pressures pregnant moms to abort babies who have any kind of disability whatsoever, and frequently offers little support for the brave few who opt to keep their babies. The history lesson seems incomplete without these facts.”
You’re right, Molly and my reading selection of the chapter on Down Syndrome from Far From the Tree was driven more by considerations of length rather than the appropriateness of including all of material. I also didn’t like Solomon’s mixing and matching his gay agenda with the story of Down Syndrome. Read on:
“Until Ronald Reagan signed the Baby Doe Amendment in 1984, which classed the neglect or withholding of treatment for disabled infants as child abuse, parents and physicians could essentially let such infants die if they wished. The Princeton ethicist Peter Singer has espoused the right of women to choose abortion through the end of pregnancy and to commit infanticide on newborns if they so choose. He has defended this position with the utilitarian argument that most women who terminate an unwanted child will produce a wanted one, and that the loss of happiness of the child who is killed (whose life would have been satisfactory) is outweighed by the happiness of the healthy child who follows.
Although Singer’s position is extreme, it reflects the pervasive devaluation of people with Down syndrome and the assumption that their lives are displeasing to others and to themselves. One mother described being asked by a psychiatrist how she got on with her son with Down syndrome; when she replied, “Terrific,” he said that there was no need to be defensive. Marca Bristo, who chairs the National Council on Disability, said, “Singer’s core vision amounts to a defense a genocide.”
By 2000, the resistance to prenatal screening from the disability rights camp had crystallized. Disability scholars Adrienne Asch and Erik Parens, in their seminal discussion of the problem, wrote, “Pre-diagnosis reinforces the medical model that disability itself, not societal discrimination against people with disabilities, is the problem to be solved.”
Prenatal genetic testing followed by selective abortion is really problematic and it is driven by misinformation.” A few years later,” Asch wrote, “Researchers, professionals, and policymakers who uncritically endorse testing followed by abortion act from misinformation about disability, and express views that worsen the situation for people who live with disabilities now and in the future.”
Leon Kass, chairman of the President’s Council on Bioethics under George W. Bush, has argued that we “treat” prenatally diagnosed illnesses by “killing rather than tending to those who would develop them.” Preventing births of any subclass of people devalues them. A society where fetuses with Down syndrome are routinely aborted clearly believes that DS is a grave misfortune. This does not mean that anyone hates or wants to slaughter people with DS; indeed, many people who would choose to terminate a DS pregnancy would also go out of way to be kind to a living person with the syndrome.
But I know from personal experience how kind sympathy can be a noxious prejudice; I do not care to spend time with people who pity me for being gay, even if their sympathy reflects a generous heart and is offered with egregious politesse.
Asch claims that women abort disabled fetuses because of the woeful lives that would come of their pregnancies; that such woe is the product of chauvinism; that such chauvinism could be resolved. Janice McLaughlin, at the University of Newcastle, wrote, “Mourning the choice the woman is compelled to make is not the same as saying she is wrong or an active participant in discrimination. Instead it points to the ways in which she, too, is a victim.”
But the acts of women do not merely reflect the society; they create it. The more pregnancies are terminated, the greater the chance that more will be terminated. Accommodations are contingent on population; or ubiquity of disability keeps the disability rights conversation alive at all. A dwindling population means dwindling accommodation.
Of the 5,500 children born with DS in the United States each year, about 625 are born to women who had a prenatal diagnosis, ” One doctor assured Tierney Temple Fairchild, who had a prenatal diagnosis, not to terminate. “Almost everything you want to happen will happen. It’s just going to happen at a different schedule.”
This is untrue. A great deal does not happen on any schedule for people with DS. The remark was nonetheless helpful to the family in deciding keep their child, and they didn’t have amnio in subsequent pregnancies. “I had a choice and I chose life,” Fairchild wrote. “Does that make me pro-choice or pro-life? Our political parties tell us we can’t have it both ways. I chose life, but I am thankful I had the choice.”
Like deafness and dwarfism, Down syndrome may be an identity or a catastrophe or both; it may be something to cherish or something to eradicate; it may be rich and rewarding both for those whom it affects directly and for those who care for them; it may be a barren and exhausting enterprise; it may be a blend of all these. “I’ve never seen a family who chose to have the baby and then were really sorry Gregoli said.
There is a strong movement to connect expectant mothers with a prenatal Down’s diagnosis with families bringing up with DS. Many parents have written memoirs expressing the rewards of raising such children, contending that there is less to complain of in Down syndrome than in the attitudes of the world. Of course, people who dislike having children with DS don’t tend to write memoirs; neither do those of low socioeconomic status, for whom the obstacles to good treatment may be daunting.
My own observation is that some parents manufacture an affirmative construction of their child’s disability to disguise their despair, while others have a deep and genuine experience of joy in caring for disabled children, and that sometimes the first stance can generate the second. I met disability activists who insisted that everyone’s joy was authentic, and I met psychologists who thought no one’s experience was. The truth is that while some people fall at either end of this spectrum, most are scattered across its wide span.”
Andrew Solomon, Far From the Tree
This completes the Down Syndrome story that I wanted to share. You cannot force women to bear Down Syndrome children but you can give a better picture of what having a DS baby may mean as well as what the evils of abortion may mean to your life. Far too little of either story gets out so that meaningful decisions can be made. Ditto the Church’s message on gay marriage which Mr. Solomon seems not to have absorbed.