The U.S. Civil Rights Commission report, "Medical discrimination against children with disabilities": a brief commentary.

For many years there has been a national debate over the moral and legal obligations owed to infants born with physical or mental disabilities. The crucial issue is, to what extent, if any, should parents or medical authorities be permitted to withhold medical treatment or nourishment from infants with disabilities? In September 1989 the United States Civil Rights Commission addressed this question in a report entitled "Medical Discrimination Against Children with Disabilities"(1) that strongly supports the Reagan/Bush administration's philosophy of preserving life at all costs.(2) The commission report basically concludes that to consider an infant's disability when determining whether to provide that infant with lifesaving medical treatment constitutes impermissible discrimination, since as a general rule the infant's disability is not relevant to that medical decision. The report contains numerous recommendations for achieving the goal of providing maximum medical treatment to all infants with disabilities. This article is an overview and critique of four major aspects of the report: quality of life considerations, section 504 of the Rehabilitation Act, the Child Abuse Amendments, and infant care review committees.(3) Quality of Life Considerations A fundamental issue with respect to the question of whether medical treatment may be--or should be--withheld from infants with disabilities is whether a "quality of life" analysis should be conducted. Proponents of the parental right to choose death for infants with disabilities operate from the basic premise that the quality of life of many severely disabled newborns will be so unacceptable that the lives of those children constitute fates worse than death. Opponents of the parental right to choose death for infants with disabilities, however, argue that people with disabilities adjust to their disabilities and generally achieve what to them is at least a minimally acceptable quality of life--certainly preferable to death. The latter group contends that quality of life analyses are not appropriate in this context. Part of the problem in attempting to compare and analyze the competing viewpoints of proponents and opponents of the quality of life rationale is that the two groups often focus upon two distinct populations. Generally, the examples given by quality of life proponents involve profoundly brain damaged children who are kept alive by constantly improving technology, but who are purportedly unable to "appreciate any of the joys of living."(4) They often focus upon multiply disabled newborns who have limited expected life spans (frequently measured in days or weeks) with dismal prognoses.(5) To the converse, quality of life opponents focus primarily on less severely disabled persons who have accommodated to their disabilities and have achieved at least a minimally acceptable quality of life. They argue that disabled persons themselves claim that they do appreciate the joys of life and would not choose death over life as a disabled person.(6) In addressing the quality of life issue, the commission report focuses solely on the arguments fostered by those who claim that a quality of life analysis is not appropriate. The report centers primarily on two factors: societal attitudes and inadequate or inappropriate medical decisions. First, the commission recognizes that rather than looking at the problems faced by people with disabilities from a medical quality of life approach, which focuses on the inabilities of people with disabilities to perform in certain aspects of life, adults with disabilities often view their problems in sociopolitical terms.(7) The sociopolitical approach focuses on the attitudes of society toward people with disabilities.(8) People with disabilities argue that the greatest barriers they face are not the physical barriers created by their disabilities, but the attitudinal barriers created by society. …