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Perspectives in Biology and Medicine 45.4 (2002) 624-626
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Prenatal Testing and Disability Rights
Prenatal Testing and Disability Rights. Edited by Erik Parens and Adrienne Asch. Washington DC: Georgetown Univ. Press, 2000. Pp. xvi + 371. $65 (cloth); $23.95 (paper).
In Prenatal Testing and Disability Rights, Parens and Asch have collected essays that explore the disability critique of prenatal testing and selective termination of pregnancy by a wide range of scholars of diverse perspectives, many with personal and professional experiences with disabilities. The book is the culmination of a two-year project at the Hastings Center in which the project members met for five two-day conferences, attended a meeting and met with members of the Society for Disability Studies, and dialogued by email. Although the group did not reach consensus on most issues, it is clear that all the participants were profoundly influenced by these discussions, and those who read the resulting book will be similarly affected. The book is thoughtful, well written, and reflects the agreements and disagreements of the participants. It is a book that deserves broad recognition and discussion, because we are all affected by the way those with disabilities are treated and understood within our communities.
For those unfamiliar with the issues, there are three major concerns of the disability rights movement with regard to prenatal testing: (1) the major problem [End Page 624] with having a disability is not the disability per se, but the discrimination the disabled face for themselves and their families; (2) the willingness to reject an otherwise desired child because of fear that the child's disability will diminish parental experience is dangerous, because it shows an unwillingness to accept any significant departure form parental dreams and could harm parental attitudes towards children generally; and (3) prenatal testing and abortion reflect an unfortunate and often misinformed decision because they conflate one trait with the person as a whole.
The book fleshes out the arguments that support the critique as well as those that refute it. One refutation is simply that not all problems of disability are socially constructed. The inability to see or to hear is not inherently neutral, and it is better, all things considered, for a person to be able to see and hear. Second, even if one agrees with the disability community's position that raising a child with disabilities can be rewarding, one does not need to commit oneself to the position that it would be a mistake to try to avoid disabilities. Pregnant women are given folic acid and encouraged not to use drugs in order to prevent disability. Prenatal screening and abortion or embryo selection are another means to prevent disability. Some counter that these two methods of disability prevention differ, because the former promotes healthy development and the latter ends the potential life of a fetus or embryo based on one trait. But if abortion is morally permissible, and many members of the disability rights movement are pro-choice, then abortion should be permissible to avoid undesirable outcomes, and disability is not desired by many. Third, the wish to avoid having a child with disabilities does not imply that if the child should be disabled that the child will be unwanted, rejected, or loved less. It is not inconsistent to say that it is preferable, all things considered, to want children who are healthy with full capacities, and yet to love and cherish all of one's children, regardless of their abilities and disabilities. Fourth, those who reject the disability critique do not do so to harm those with disabilities. It is not inconsistent to prefer healthy children with full capacities, and yet to seek to minimize discrimination towards the disabled, to support policies that allow those with disabilities to maximize their potentials, and to support programs that help those with disabilities to overcome their disabilities.
Part 1 of the book is a summary of the claims, counterclaims, arguments, and objections to the disability rights critique by Parens and Asch enriched by consultation with the project working group. Part 2...