by Carol Castellano
From the Editor: Prenatal Testing and Disability Rights, Erik Parens and Adrienne Asch, Editors, published byGeorgetown University Press, © 2000, 371 pages, is a thought-provoking new collection of essays focusing on some of the most difficult and troubling ethical questions facing the disability community and society as a whole today. Adrienne Asch is a long-time Federationist and one of the strongest voices today articulating the rights of disabled people. Carol Castellano is First Vice President of the National Organization of Parents of Blind Children. Here is her review of this important new book:
Science has cracked the human genetic code. Modern-day research holds the promise of new understanding and treatment of disease and disability. Our society sees this for the most part as goodwe won't get sick, won't become disabled, won't grow old.One aspect of the genetic information explosion is prenatal testing, which can screen fetuses for hundreds of genetic conditions. Prenatal testing has come to be seen as a logical extension of good prenatal careafter all, it helps prospective parents have healthy babies. Who could argue with this goal?
Prenatal Testing and Disability Rights takes a hard look at the implications of prenatal testing and subsequent selective abortion from a variety of points of view. The book is edited by Erik Parens, associate for philosophical studies at the Hastings Center in Garrison, New York, a research institute which addresses ethical issues in the areas of health, medicine, and the environment, and Adrienne Asch, the Henry R. Luce Professor in Biology, Ethics, and the Politics of Human Reproduction at Wellesley College, Wellesley, Massachusetts, as well as a recent recipient of the NFB's Blind Educator of the Year Award. The book is the result of a Hastings Center project that sought to bring together disability theorists and advocates with members of the bioethics and medical communities to discuss the disability rights critique of prenatal testing for genetic disability. Among the contributors to the project were scholars and researchers in the fields of disability studies, medical genetics, genetic counseling, medicine, law, the social sciences, ethics, philosophy, education, and public health. Some of the participants had disabilities, and some were parents of people with disabilities.
Those espousing the disability rights critique question the unbridled use of prenatal testing, especially since its purpose, often unspoken, is to prevent the birth of babies with various disabilities or conditions. The critique has three main contentions: that the decision to abort a fetus diagnosed with a genetic abnormality is often made on the basis of false assumptions about life with a disability; that prenatal testing and selective abortion have frightening implications for parenthood and our ideas about the loving parental bond; and that a negative message is sent to society by the act of terminating a pregnancy specifically to avoid the birth of a child with a disability.
Parens and Asch suggest that the offer of a prenatal genetic test is in itself not neutral, because it means that those who make the offer think that a reasonable person might go down the path of testing followed by selective abortion. The authors would prefer that medical care providers encourage prospective parents to explore their feelings and values and consider realistic information about disability. In this way the message conveyed would be that a reasonable person might also choose not to abort.
Can bringing up a child with a disability offer the same satisfactions and joys as raising a nondisabled child? Do families with a disabled child suffer damage and dysfunction in a manner and degree not even comparable to families with nondisabled children? According to the book, the professional literature on the subject tends to present living with a disability or being the parents of a child with a disability as an unmitigated misery, full of chronic sorrow and pain and quite outside the realm of normal familial experience. The book cites a 1981 research article called "Parentalplegia," which helpfully explains that children with handicapping conditions cause a secondary handicapping condition in the parents–parentalplegia, a psycho-physiological or stress-induced condition caused by an inability on the part of parents to adjust to the handicap of their children.
This is the literature that forms the basis of thought for those who counsel prospective parents deciding whether or not to abort. Although these professionals are committed to nondirective counseling (not telling couples what to do), the information they are working from when they offer a picture of what life might be like with a particular condition tends to be grim.
Interestingly, reports from disabled individuals themselves and from their families paint a much more balanced picture. Self-reporting indicates that joy as well as challenge fills the lives of people with disabilities and that families with disabled children fare on the whole no better and no worse than families with nondisabled children. A strong recommendation in the book is for those in the medical and genetics-counseling fields to learn more about life with a disability from people who live that life so that they can provide more balanced information.
Are there extra demands involved in parenting a child with a disability? Several contributors to the book argue that these demands may be constructions of society, meaning that, if society would change to become more helpful and welcoming, raising a disabled child would not encompass extra demands. Families seem able to cope and adapt, especially when appropriate services are available.
Should parents be expected to accept any child, regardless of health or condition, even when the option exists to choose a different fetus, an unaffected fetus? What is the nature of parental love? Should we have an expectation that parents can love any baby unconditionally? Some in the book argue that genetic testing and the option of selective abortion make entering a family more like entering a club, where selection is based on certain characteristics; and, if a person doesn't have the right ones, he or she cannot get in.
And what of the message sent by a decision to abort to avoid disability? Does such a decision express a devaluation or unacceptance or even contempt of those who already exist and live with disability? The concern is poignantly articulated by Adrienne Asch: "Do not disparage the lives of existing and future disabled people by trying to screen for and prevent the birth of babies with their characteristics" (p. 13), and by Marsha Saxton: "The message at the heart of widespread selective abortion on the basis of prenatal diagnosis is the greatest insult: some of us are `too flawed' in our very DNA to exist; we are unworthy of being born." (p. 14) Saxton suggests that society should eradicate the social discrimination that attends disability, not eradicate the people who have the disabilities.
Other authors in the volume reject the contention that a negative message is sent by women who choose to abort. Their essays argue that women who choose selective abortion may still be entirely accepting of people with disabilities and supportive of the goals of the disability rights movement.
Among the many interesting themes discussed in the book is the fact that people can hold complex and contradictory beliefs about a subject. The results of research by Nancy Press and Carole Browner exploring pregnant women's attitudes toward disability in the context of prenatal testing demonstrate this. When women were asked what they admired about people with disabilities, they answered with upbeat and very positive, even romanticized attitudes. When asked how they themselves might react to the experience of raising a child with a disability, a very different-–and negative–-set of views emerged.
Other fascinating research by Dorothy C. Wertz involves the attitudes of genetics professionals, primary care physicians, and patients toward abortion in various situations, personal attitudes about abortion for specific conditions, and attitudes regarding what kind of genetics counseling would be appropriate if specific conditions were present in the fetus. Again general attitudes conflicted with personal values. These complex issues and internal contradictions are expressed in a very personal way in the moving and beautiful essay "Somewhere a Mockingbird" by Federationist Deborah Kent.
One of the many other powerful issues explored in the book is whether or not our society will or should accept the drawing of lines regarding when selective abortion would be acceptable. Would it be acceptable, for example, for a condition in which a baby would live a painful life of only a few hours? What about for sex selection? Another disturbing issue discussed in the book is the reality of wrongful-birth and wrongful-life lawsuits, where for better or worse court decisions are shaping the direction in which our society will go.
This thought-provoking book does not claim to answer all of the questions it raises. It certainly succeeds in its goals of providing a forum for a serious examination of the disability rights critique and for stimulating societal discussion of these complex and critical issues that will be with us increasingly in the years to come.