Vol. 10 No. 3 (March 2000) pp. 233-235.

EQUAL TREATMENT FOR PEOPLE WITH MENTAL RETARDATION: HAVING AND RAISING CHILDREN by Martha A. Field and Valerie A. Sanchez. Cambridge: Harvard University Press, 1999. 439 pp.

Reviewed by Susan Gluck Mezey, Department of Political Science, Loyola University Chicago.

In this comprehensive work on the reproductive choices available to persons with mental retardation (the term preferred by the authors), Martha Field and Valerie Sanchez challenge the reader to forego stereotypical thinking about persons with limited mental capacity. They raise difficult questions for which there are few clear-cut or easy answers, a fact they point out themselves throughout the book.

The book primarily revolves around the authors' attempts to determine criteria for decision making with respect to sterilizing persons with mental retardation, that is, who should make the decisions, what standards should be applied, and what role should the person with mental retardation play in the decision making process. Access to abortions and contraceptives is a secondary consideration, with the authors raising many of these same questions. However, because of differences in the types of procedures, they often reach different conclusions.

Field and Sanchez argue that, given society's recent commitment to "normalizing" life for persons with mental retardation, decisions about having and raising children should be made by the individuals with mental retardation to the maximum extent possible. In the second part of the book, the authors discuss the extent to which society should intervene in families where one or both parents have mental retardation. They argue that persons with mental retardation should be given the same opportunities (and assistance) as all parents -- especially in the absence of specific allegations of abuse and neglect.

The book presents a strong case for equal treatment of persons with mental retardation as a civil rights issue. Acknowledging the long struggle to establish constitutional due process guarantees to protect the rights of such persons, they stress that the fight for due process was only part of the battle. The major thrust of their argument is that persons with mental retardation have a constitutional right to be treated equally -- an equal protection claim -- not only a right to be treated fairly -- a due process claim. In the context of society's current preference for deinstitutionalization and normalization, they argue that, to the maximum extent feasible, persons with mental retardation must be allowed the same choices as the rest of society in deciding whether and when to become parents.

One of the underlying themes of the book is the lack of uniformity of treatment of people with mental retardation because state laws are subject to varying interpretations by each judge, doctor, or guardian. Consequently, the authors' stress, changing the rules will not necessarily

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guarantee changes in the way that persons with mental retardation are actually treated. Interestingly enough, although the authors argue for constitutional equality, they do not make a case for nationalizing the rules through federal legislation (beyond the existing Americans with Disabilities Act) so that at least all decisions about the reproductive rights of persons with mental retardation will be based on the same set of legal criteria in decision making.

The first few chapters lay the groundwork for the rest of the book; here the authors present essential information about persons with mental retardation, including matters related to causation, definition, diagnosis, and testing. They point out that most persons with mental retardation are in the mildly retarded category, but that society tends to treat all persons with mental retardation as an undifferentiated group regardless of their mental capabilities. Also by failing to distinguish those with mild retardation from those severely affected by mental incapacity, society does a disservice to all persons with mental retardation.

In discussing the issues of reproductive decision making by persons with mental retardation -- primarily women in their childbearing years -- the authors' stress that the optimal approach is to leave it to the woman herself to decide. However, they note that this approach is not the rule in any state in the Union. The dilemma, of course, is to ascertain what the woman's wishes are and, once determining them, to also ensure that they are the product of informed decision-making. The authors take the reader through the labyrinth of sterilization policymaking: from the bad old days of forced sterilization in the name of eugenics to the current practice of trying to develop guidelines for nontherapeutic sterilization for persons with mental retardation. The challenge is to protect against involuntary sterilization and, at the same time, allow persons with mental retardation the same access to sterilization, contraception, and abortion as the rest of society.

After discussing the standards for evaluating decisions about sterilization -- ranging from a "best interests" approach to a "substituted judgment" approach -- the authors opt for neither, claiming that both allow the decisionmaker to rely on his or her own values rather than the preference of the person involved. The authors stress that the only fair and equitable way to judge when to perform sterilization is to follow the actual wishes of any patient who can communicate them. Although the circumstances are somewhat different with respect to access to abortions and contraceptives, the authors maintain that the same principle should be applied here as well. In general, the authors believe their approach to reproductive decision making will mean fewer sterilizations and abortions performed on persons with mental retardation.

The rule that the authors propose is, with some minor exceptions, self-determination in sexual matters for the vast majority of persons with mental retardation who are able to express their preferences, excepting only those who literally cannot communicate their desires. Adults with mental retardation should therefore have the legal authority to make decisions about elective medical procedures performed on them, and, under this rule, a nonconsensual sterilization should never be performed, no matter how much it may seem to be in the best interests of the woman with mental retardation. They argue that an "informed consent" rule is inappropriate and should be replaced by a measure that indicates whether one has the ability "to express oneself."

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Ironically, the authors acknowledge that changing the legal standard will not greatly affect sterilization practices in the short run because women with mental retardation will continue to be subject to the influences of the people who take care of them and supervise their activities. However, they insist that their approach will bring persons with mental retardation into the decision making process as much as possible and will also help advance "the societal aspiration of treating persons with retardation like other people" (p. 195).

The second part of the book shifts to the treatment of parents who have mental retardation, presenting proposals for limiting society's power to remove their children from their homes under state child welfare laws. There are numerous examples of discriminatory policies, in which, despite laws to the contrary, mental retardation per se becomes grounds for removing children from their homes. The authors maintain that fitness to parent is largely independent of mental capacity, arguing that parents with mental retardation should be judged by the same standards as those without mental retardation and that government must provide services to parents with mental retardation -- as it must to all parents -- to help preserve the family.

Although the book does an excellent job of presenting information on a difficult and sensitive topic, I have one quibble with it. The authors do not examine existing state case law in a systematic manner, making it difficult to get a clear sense of the law in this area. They tend to introduce material from cases primarily to prove their point about inequalities in the law. However, simply presenting snippets of numerous cases in each chapter diminishes the reader's ability to understand existing state laws pertaining to reproductive decision making and parenting by persons with mental retardation.