The public discourse we need has been stalled - even in the disability community - because when people discuss the implication of the new reproductive technology at all, they tend to do so within the framework of their views on abortion.Yet these views transcend the abortion controversy.

The Bad Baby Blues

Reproductive Technology & the Threat to Diversity

by Lisa Blumberg

Lisa Blumberg is a corporate lawyer and freelance writer.

It was my feminist leanings superimposed on my disability orientation that fueled my interest in the implications of reproductive technology.

In l980, a woman I worked with who was pregnant told me she was having amniocentesis. "I really don't want the test," she said. "I don't know what I'm supposed to do if there is a problem. I don't want to make a decision about having the child." When I asked why she was having it, she said, "I'm 37, and my doctor told me every expectant mother over 35 needs to have it. He wouldn't feel comfortable if I refused."

I just said "good luck" (as is usually the case, the test revealed nothing) without telling her that her doctor's stance made me uncomfortable. Until then, I thought that whether to have prenatal tests was a decision that prospective parents made for themselves, based on their own attitudes on pregnancy, disability, family life and a host of other things. Without being able to articulate why, I thought it was dangerous for a doctor to impose an obligation on a woman to learn beforehand whether her child might be disabled.

A few years later, I was a watching a news story on the merits of a predictive test for spina bifida. A woman explaining why she had gotten an abortion after test results had been positive said, " I defy any woman, no matter how much she wants a child, to continue a pregnancy after they show her a picture of a deformed baby and tell her that 'this is going to be yours'."

I thought about that woman a lot. What concerned me was not so much the choice she made as the approach of her medical advisors. What a baby with an untreated medical problem looks like does not indicate what a person with a disability can become. Was it fair to urge people to make such a profound decision as to whether to bring a particular type of child into world on the basis of such a firsthand visceral response?

I started seeing articles in news magazines suggesting that if prenatal testing were used widely and women were then "willing" to abort fetuses found to be "defective," the incidence of children with certain types of disabilities could be significantly reduced.

The word "willing" always jumped out at me. Amniocentesis had been originally been touted as a way to expand pregnant women's options, but now it seemed that women were expected to use the knowledge that could be gained by prenatal testing in a way that satisfied others.

In the past decade, prenatal testing has become a multi-billion-dollar industry, with hundred of conditions now capable of pre-birth detection. Screening methods, some invasive and some not, are constantly evolving. Ultrasound, which used to just measure fetal growth and position, is giving way to targeted ultrasound which can zero in on a specific body part of the fetus such as the face. In most cases (but by no means in all) when a fetus is diagnosed as having a permanent disability, the pregnancy is terminated.

It is amazing that there has been scant public debate about this revolutionary new technology that allows us for the first time in all of human history to ascertain certain medical facts before one is even a person. Nothing that earlier generations dealt with during pregnancy was in any way comparable. In what varying ways can we react as individuals? How should we react as a society? What are legitimate public health goals? Can we view all people as equals and still feel that it is important to identify some traits prenatally? These are some of the questions that we must start addressing or else we could find ourselves drifting toward a society where there is little tolerance for either physical diversity or diversity in decision-making.

Disability activists need to be aggressive in initiating and framing the debate because our interests, along with those of women, are the most directly involved.

There are differences between ordinary abortion and selective abortion. Most abortion occurs because the pregnancy is unexpected and the prospect of parenthood itself is creating a crisis for the woman. Selective abortion, which constitutes a tiny fraction of all abortions, occurs when the pregnancy is planned but the fetus is perceived as having undesirable characteristics. In other words, selective abortion involves judgments about people. Indeed, women who abort due to fetal "defect" are often urged to get pregnant again quickly.

Almost everyone, regardless of how pro-choice they are, has views on where a moral line should be drawn in selective abortion. Where the difference in opinion arises is in the positioning of that line. Many feminists express misgivings over abortion based on sex. Most medical ethicists would oppose abortion based on eye color. The idea that a couple who share an inherited trait such as some types of deafness might want to end a pregnancy involving a fetus that did not have the same gene and "try again" out of the belief that their family will work better if all members have the same characteristics is controversial even in the disability community.

Without suggesting there should be restrictions on abortion, it is legitimate for disability activists to question the general public consensus that fetal disability is one of the "best" reasons for abortion - right up there with rape or incest and what right-to lifers call "hard cases." It is not inevitable that prenatal diagnosis must change a wanted future baby into a "defective" fetus about which a decision must be made. As Adrienne Asch, a professor at Wellesley College has written, "suppose Down syndrome, cystic fibrosis or spina bifida were depicted not as an incalculable, irreparable tragedy but as a fact of being human? Would we abort because of those conditions or seek to limit their adverse impact on life?"

The disability rights movement in the quarter century it has been in existence has been successful on some nuts-and-bolts access issues. Important civil rights laws have been passed. However, basic attitudes towards disability really have not changed. It is a premise of the movement that a person with a disability is limited more by society's prejudices than by the practical difficulties that may be created by the disability. Unfortunately, by and large, nondisabled people don't believe it. Most people, to the extent they must think about disability at all, adhere to the medical model of disability. Under the medical model, a person's disability is seen to be the cause and sum of that person's problems, with the paramount question therefore being whether the impairment can be alleviated.

Nowhere is the medical model more entrenched than with medical professionals. And it is medical professionals, and in particular genetic counselors, who help prospective parents evaluate their options after prenatal diagnosis.

The role of genetic counselors is to give prospective parents advice about how their child's expected condition can affect people - so the parents can make an informed decision regarding whether to continue the pregnancy. Genetic counseling is intended to be "nondirective," and most counselors do refrain from telling their clients what their decision should actually be. However, when counselors provide prospective parents with merely a list of deficits their future child may have (or may not have, since the same diagnostic label can reflect itself in different individuals in widely disparate ways), they are only telling half of the story. The other half is how people cope with these limitations and what other factors may influence their lives.

Perhaps the most serious limitation of genetic counseling is that counselors rarely offer clients the opportunity to meet persons with disabilities similar to those their child might have or to talk with parents of disabled children. Indeed, some genetic counselors resist the idea out of the belief that this would increase the discomfort of their clients. Yet clients who did not want to accept the offer could just say so. We can and must urge that the sources of information people have access to within the genetic counseling process be broadened.

Persons affected by disability are the most qualified to provide insight on the lifestyle concerns that prospective parents will have after prenatal diagnosis. We cannot tell others what they can personally cope with, but we can tell them how it is for us - and we can share with them our individuality and the range of our views. We can suggest that it is alright to embark on an endeavor which sometimes may be hard, which may make one an outsider and where there are few signposts. We can point out that it is O.K. to do the unusual thing.

On a more general social level, consideration also needs to be given to how the emphasis on prenatal testing and the perceived need to make decisions after diagnosis affect people's relations with one another. A prominent newspaper columnist once described the reactions she got to her veto of her doctor's age-based recommendation that she have amniocentesis. She chose to forego the option of termination in the unlikely event the fetus was disabled, she said, because of the children she already had. She did not know how she could find the words to explain to them a decision not to have a child who might use a wheelchair or always need special guidance, she said, and still affirm for them her view that differences in people should be accepted.

She pointed out that this was not a snap judgment but something she had reflected upon at length. However, she said, people she thought knew her well dismissed her desire to contemplate older motherhood without prenatal tests with an "Oh, it must be because you're Catholic." She is, in fact, pro-choice.

The woman had hit upon something important. In an open letter to genetic counselors published in a professional journal, one woman described the aftermath for her family of a decision to end a pregnancy involving a fetus with Down syndrome. Her school-aged children, disturbed by their parents' grief, asked what was so bad about this type of disability.

Their father, said the letter writer, then had to instruct the children on the realities of life with a "handicapped child" - or at least what he thought the realities were. He asked them to imagine what it would be like to be trying to cross a street and always get confused about whether red meant "go" or green meant "go."

Later, when the children were asked to write down their feelings about what had happened, the older one told how sad it had been, and said "the only good thing is not having a child like that in our family." One wonders how children specifically encouraged to see disability as an all-encompassing burden both for the person who has it and for others will interact with the people with noticeable disabilities that they will most certainly meet in life.

Genetic counselors should be urged to help parents who do decide to abort after prenatal diagnosis to find "disability neutral" ways to talk about their decision with children - discussions which focus on the limitations or competing priorities of the family, rather than on assumptions about the potential of people with disabilities.

Reproductive technology can be divisive. It can reinforce prejudices.

There is another side of prenatal testing though. At a conference designed to start a dialogue between disability rights activists and the medical community, I listened as a parent recounted how, after her first child died from Tay-Sachs, she chose to have Tay-Sachs screening in her subsequent pregnancies. All she wanted was children who would live, she said; and eventually she had them. She told us, "I was given an option which I would not otherwise have had - the option to have a family." Another woman with a family history of cystic fibrosis had a predictive test when she was pregnant because, if her child were effected, she wanted to get on a particular doctor's roster right away. There are people who do want the tests, and people who have benefited from them.

However, it is one thing to acknowledge a couple's right to make a personal and private decision to use prenatal testing based their own unique circumstances, it is quite another thing for there to be a general expectation that every pregnant woman over 35 will go on defect alert.

What scares me is not the individual decisions people make -although I may disagree with some of these decisions - but the fact that society has latched onto the new reproductive technology as a lead weapon in a simplistic war against "birth defects." It is chilling to read decisions in wrongful birth and wrongful life suits where judges opine that avoiding the births of disabled children is a social good. It is equally chilling to hear public health analysts debate whether the abortion rate of "defective fetuses" will be high enough to make state-sponsored prenatal programs cost effective and efficacious. The legislature of at least one state (Alabama, in a law first passed in the late 1970s) has declared it to be state policy "to encourage the prevention of birth defects and mental retardation through education, genetic counseling and amniocentesis..."(Section 22-10A-l of the Alabama statutes).

How easily ignored is the ethical imperative placed on genetic counselors to be nondirective! And how easily blurred is the critical distinction between preventing persons from having disabilities and preventing persons with disabilities! Most frightening in my view, though, are the articles in legal and medical journals suggesting that carrying a disabled fetus to term constitutes "fetal abuse" on the part of the woman.

Ruth Hubbard, professor emeritus of Biology at Harvard, has written, "my problems with amniocentesis stem mostly from my concern about how it creating eugenic thinking. We act as if we can look at a gene and say 'Ah-ha, this gene causes this ... disability' when in fact the interactions between the gene and environment are enormously complex. It moves our focus from the environmental causes of disabilities which are terrifying and increasingly daily to individual genetic ones." This misplaced focus will not only result in individuals acquiring disabilities unnecessarily: it will undermine the status of people with disabilities, regardless of the origins of their disabilities, and of women.

The new reproductive technology represents a boon for some and terror for others.

It is startlingly new but it invokes feelings that are age-old. I believe that the public discourse that we need has been stalled - even in the disability community - because when people discuss the implication of the new reproductive technology at all, they tend to do so within the framework of their views on abortion. Yet these issues transcend the abortion controversy, even as they cut across both sides of that debate. Somehow, we must begin to think more creatively and learn to meld together different world views. It is only then that we will have the hope of solving the conundrums created by the new reproductive technology in ways that will respect the individuality of us all.

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