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Issue 1


'No Consensus'
from the Introduction


Women talk about prenatal testing


More book reviews from this issue


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Airing the 'disability perspective' but getting few converts

By Mary Johnson

PRENATAL TESTING AND DISABILITY RIGHTS Edited by Erik Parens and Adrienne Asch. Washington, D.C.: Georgetown University Press. 352 pages. Paperback. $29.95.

"Their picture is of a line of babies waiting to be born, and a quality control officer coming along and throwing 'people like them' out of the line so they never make it to earth. My picture is of a 'disembodied soul,' the sense of my yet-to-be-born child, waiting to be inserted into a baby-shaped container, with me standing there to make sure my child's soul gets into a well-functioning container."

Mary Ann Baily, a fellow at the AMA Institute for Ethics, admits that what she has said is "utter nonsense from the scientific point of view." Yet her description is a good way to understand the split that exists between those who see prenatal screening for "defects" as wrong, and those who welcome it as an unmitigated good. We get both views -- all their varying manifestations -- in "Prenatal Testing and Disability Rights."

'Wrongful life'

France's highest court ruled in November that 17-year-old Nicholas Perruche could demand compensation for having been born -- the 'wrongful life" case argued that doctors should have prevented his birth, but that a medical laboratory had failed to diagnose his mother's rubella and advise abortion.

The public prosecutor, arguing against the ruling, had said that paying damages to Nicholas and his family would "amount to deciding that some lives were not worth living."

Does prenatal testing for genetic defects "send a message" to disabled people? Adrienne Asch, the Henry L. Luce Professor of Biology, Ethics and Reproduction at Wellesley College, insists that it does. For two years, Asch and Hastings Center bioethicist Eric Parens engaged a group of scholars, philosophers, ethicists, biologists, physicians, sociologists and educators under the auspices of the Hastings Center to grapple with that question, and the disability rights perspective on prenatal testing in general. This book is the product of that project.

After listening to all the opinions expressed by project members, Asch writes in an essay late in the book that she has not changed her mind. She says that people who choose to abort based on a diagnosis of disability are "allowing a single trait to stand in for the whole, to obliterate the whole."

People like Baily -- and they are in the large majority in society -- simply do not believe that aborting a fetus because it will likely have a disability "sends a message" that is bigoted; most do not believe that it sends any message at all. Many do not agree that the provision of more accurate information about disabilities or about living with particular disabilities would make any great difference in their decision to abort a fetus they feared carried a "defect." Even knowing about disabled people and their lives, she would still not want to bear a disabled child if it could be avoided, says Baily. Nor do they buy the "any/particular" distinction articulated by Asch, who has been writing about the disability perspective on reproductive choice for decades.

The "any/particular distinction" refers to the difference between the decision to simply not have any child at all at the time -- the decision of someone who becomes pregnant when they were not planning a family and thus seeks an abortion, for example -- and the decision to abort a particular fetus, even when the woman in fact wants a child, when prenatal testing has revealed disability in the fetus.

The project, funded in part by a grant from the National Institute on Disability and Rehabilitation Research, did not reach unanimity on any of the "major claims" of the disability rights movement -- not after five intense two-day intense meetings, not despite ongoing email correspondence among participants, notwithstanding meetings with members of the Society for Disability Studies.

So are we simply at that juncture in history in which almost no one outside one's tiny community of thought believes one's critique; before one's ideas are accepted? Is this what it was like in the 1800s to hear perfectly nice, logical people say things which we now we see as hopelessly racist? It's hard to tell.

This is an important, though academic, book. It lays out both the disability rights critique from Asch, Marsha Saxton and others, and the reasons why people just don't "buy" the argument that life with a disability is alright, which is really what it comes right down to.

"Using prenatal tests to prevent the births of babies with disabilities seems to be self-evidently good to many people," Asch writes. No matter that critics argue that these beliefs stem from unexamined attitudes about disability; this project shows that when the attitudes are examined they are often found to be fine attitudes -- by those who hold them.

In her piercingly honest essay "Somewhere A Mockingbird" (which also appeared in the anthology Bigger Than The Sky: Disabled Women on Parenting (Ragged Edge, Jan./ Feb. 2000), Deborah Kent reports what happens when she and her husband begin to plan having a child, knowing it may be born with Kent's genetic blindness: Despite the closeness of the couple, writes Kent, she had failed to convince her husband, even after their years together, "that it is really okay to be blind."

"I will always believe that blindness is a neutral trait, neither to be prized nor shunned. Very few people, including those dearest to me, share that conviction... They cannot fully relinquish their negative assumptions...."

"Though they dread blindness as a fate to be avoided at almost any cost," she writes of her family and friends, "they give me their trust and respect. I don't understand how they live without discomfort amid such contradictions."(emphasis ours.) Yet many of the project's participants live with this contradiction seemingly quite well and without question.

If there is a theme to be taken away from this volume, it is that society can quite easily live without examining such contradictions. In one of the most sobering essays in the book, Nancy Press writes that "certain silences in the public discourse have actually enabled the routinization and rapid growth of prenatal testing,.... by obscuring or limiting the need for public debate about two topics about which Americans are deeply conflicted but which lie at the heart of prenatal testing: abortion and disability."

This book arrives at a time in our society when prenatal testing is becoming routine -- and a duty. As tests for finding ever more genetic traits and predispositions become ever easier to administer, our country's legal hubris being what it is, women will be told to get them done, or else.

Sociologist Dorothy Wertz contends that "even if some lines might be drawn in practice they will not make a difference since market and political forces will determine which prenatal tests are offered and in what kind of an atmosphere they will be offered." Biologist Pilar Ossorio points out that "when prenatal tests become part of routine [medical] practice, courts will find that physicians have a duty to offer them."

Detailing the strange and horrific outcome, today's "wrongful birth" and "wrongful life" lawsuits (in which the disabled child argues before the court "that her life is worse than non-existence"), Ossorio's chapter is a sober reminder of the road we head down when we reject the disability rights critique of prenatal testing.

Mary Johnson is editor of Ragged Edge magazine.


No Consensus

Given the controversial nature of the subject and the diversity within our working group, it is not surprising that we could not reach consensus about all of the questions we discussed. We did not achieve unanimity on the major claims of the disability perspective -- most specifically, that prenatal diagnosis is based on either morally problematic views about desirable parental attitudes and morally questionable views about people with disabilities, or on misinformation about the nature and consequences of disability.

We did not reach consensus about what weigh to give or how best to use the disability arguments about prenatal genetic testing in making public policy. Nor did we concur more specifically about whether it is wise public policy to draw lines between reasonable and unreasonable tests.

Nonetheless, our project achieved two important aims: First, we aired and seriously considered the concerns of the disability community. Second, to the extent that we achieved consensus about the merits of some of its claims, we recommended changes to ameliorate some of the problems associated with the customary ways of providing prenatal testing.

from the Introduction, Prenatal Testing and Disability Rights
Edited by Erik Parens and Adrienne Asch


Women talk about prenatal testing

In what has to be one of the most fascinating reports yet of true mainstream attitudes about disability, Oregon Health Sciences University's Nancy Press discusses data she and a colleague collected through interviews with a group of pregnant women who had no real likelihood of bearing a child with a disability but who had nonetheless all been offered prenatal screening.

The women were asked about "their images of disability and their attitudes toward being a child with a disability" -- two very different things, as it turned out.

"Striking discontinuities were seen," writes Press, between the "upbeat, strongly positive and almost romanticized attitudes" the women expressed when asked in general about "people with disabilities" and the extremely fearful and negative attitudes they exhibited when asked how they would feel if they bore a child with a disability.

When asked in general about their "attitudes about people with disabilities," many referred to people as "triumphing," as Press puts it; the women brought up things like the TV series Life Goes On. When questioned about bearing a disabled child, though, responses changed dramatically. A woman who had told Press that "handicapped children were the most beautiful beings in the world" said that if a child born to her had a disability she would 'cry.'" The result of the interviews, writes Press, showed "a dynamic and somewhat confused mix of old images of mental retardation and incapacity juxtaposed with new images of different but 'special' children" -- and absolutely no way to sort them out.

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