Adrienne Asch. Handbook of Disability Studies. Editor: Gary L Albrecht, Katherine Seelman, Michael Bury. Sage Publications. 2001.
In 1989, Canadian philosopher Susan Wendell characterized the way bioethics literature discusses disability as follows: “Under what conditions is it morally permissible/right to kill/let die a disabled person and how potentially disabled does a fetus have to be before it is permissible/right to prevent its being born?” (p. 104). This statement aptly captures much of what bioethics has said about disability and fits the dominant view of bioethics held by those in disability studies and disability rights. Yet, despite serious problems in much of the bioethics literature for anyone with a minority group or social model of disability, the field of bioethics struggles with topics of profound importance to disability studies and to disability rights. Furthermore, some questions of bioethics pose an important challenge to both the social model and the minority group model of disability and compel people to reconsider the social, moral, and policy implications of forms of human variation.
In what follows, I review the major intersections of disability studies with bioethics, describing the principal issues that have sparked controversy between disability rights activists and scholars and those in traditional bioethics. My discussion lays out key arenas of struggle between those with a disability rights perspective and those within bioethics; it also comments on issues that have received less direct attention from within disability rights but that could benefit from a dialogue. Highlighting the critical intersections of bioethics and disability studies oversimplifies matters of considerable concern to traditional bioethics. Moreover, the two fields have not necessarily confronted issues at the same moment; rather, disability rights has reacted to bioethics literature and to dramatic, highly publicized instances of bioethics debates. Thus, I focus on issues rather than the chronology of bioethics discussion or disability response. I conclude by asking disability studies to grapple with the social justice and definitional questions posed by bioethics because they are crucial to advancing our work in disability studies and disability rights.
Describing Bioethics: Convergence and Contrast with Disability Rights
What unites the field of bioethics is its concern with fundamental questions of health and illness, life and death, the relationship of medicine to nature, what constitutes a life of quality, and whether there are ever life situations that appear worse than not being alive. Bioethics shares some interesting and significant similarities with the international disability rights movement and the social/minority group models of disability—models that I will generally discuss together because they overlap on many bioethical issues (see Shakespeare and Watson, this volume). Both worldwide bioethics and the worldwide disability rights movement have become known only in the past half century, and each has emerged in reaction to a dominant paradigm in the medical and helping professions. Recognition of bioethical issues first arose when people learned that in World War II Germany and in the postwar United States, physicians and scientists had abused many classes of vulnerable citizens by failing to obtain their informed consent to serve as subjects in medical research. Prisoners, concentration camp inmates, African American sharecroppers, and residents of institutions for the psychiatrically and cognitively disabled all became victims of government and professional research interests. Discovery of these abuses spurred demands for regulation, reform, and new oversight of governmental and professional behavior (Annas and Grodin 1992; U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research 1978).
The early U.S. independent living and disability rights movement exemplified much the same challenge to professional domination and demands for self-determination and autonomy (Gaylin et al. 1978). Adults with disabilities and parent advocates for disabled children protested abuses by powerful government and philanthropic institutions that historically had usurped their decision-making authority, using the same language as physicians, lawyers, philosophers, and theologians who questioned the power and paternalism of medicine in conducting medical research and using new life-sustaining technologies. During the 1960s and 1970s, as the National Federation of the Blind demanded representation on boards of service agencies (Matson 1990) and as Ed Roberts and other students with disabilities challenged the paternalism of the University of California at Berkeley and created the first center for independent living, bioethics was questioning whether people who seemed near death should be sustained by technologies such as mechanical respiration or tube feeding. Even though medicine could save lives after traumatic injury or could maintain lives of people affected by cancer, stroke, and heart or kidney disease, should patients have the authority to refuse these treatments? If so, on what basis and for what reasons might it be morally acceptable and legally permissible to decline life-saving technology for oneself? If individuals could challenge professional authority for themselves, could they do so on behalf of their minor children or demented parents? Was it ever appropriate for government or professionals to limit patient or family in the realm of medical decision making?
Like the new paradigms in disability scholarship and activism that have moved from demands for individual control and self-determination to calls for sweeping societal change, bioethics has recognized that the complex life-and-death decisions made by individuals and families cannot remain its only concern. Recent debate also focuses on questions about the implications of research on life-creating or life-changing technologies themselves, on questions of what constitutes a just distribution of social resources for medical care, and on which life situations should properly come under the purview of medicine. These and other bioethical issues appear regularly in the newspaper and on television, radio, in film, theater, and fiction. Should an experimental therapy for cancer be paid for by a health insurance plan? Should a health maintenance organization (HMO) refuse to cover any treatments for particular conditions, such as alcoholism, substance abuse, “gender identity disorder,” depression, or infertility? When, if ever, is growth hormone therapy an appropriate treatment? Should society support research on human cloning, male pregnancy, gene modification, or extending the human life span to more than 100 years? Although some of these questions may ring of science fiction, others have already faced us. They all demonstrate that biology is not destiny and that we must grapple with what control we believe is appropriate to exert over our biological lives.
If Western bioethics resembles the disability rights movement in its commitments to patient autonomy, skepticism about professional power, and paternalism and championing of consumer protection, it has never accepted the claims of the movement and of recent disability scholarship in its assessment of the impact of impairment. Whether writing out of a religious or secular orientation, bioethics has tended to cast discussions about life-and-death questions in terms of contrasts between what might be called the “sanctity-of-life” and the “quality-of-life” approaches. Until the advent of means to save premature babies, young people injured in wartime or car accidents, and elderly people who had heart attacks or strokes, societies had not needed to consider whether life in such impaired conditions should be maintained. The dominant bioethics voices have argued that human life had to be respected and valued but not necessarily at any cost or in any state of impairment. Now that human mastery over nature permitted lives to be saved and sustained despite significant illnesses and disabilities, it was incumbent on individuals and societies to determine the limits to which medicine and technology should be used for these purposes. Instead of the medical question, “Can this life be saved?” bioethics invites the question, “Should this life be saved?” Medicine could now decrease mortality but only by increasing the numbers of people of all ages who would live with chronic illnesses or disabling conditions. Bioethicists have taken on the mission of supporting those who believed that the quality of the life after treatment should be a factor in medical decision making and in decision making about allocations of resources (Morreim 1995; Walter 1995). Bioethics asks the disability community the following: Is it appropriate to use technology and skill to sustain the life of someone who would have a disability?
There is not one disability response any more than there is only one bioethics response; nonetheless, the dominant message of disability studies and disability activism disputes the statements permeating most of bioethics. Bioethics writing, like the medical model of disability now being replaced by a social model, has failed to question traditional understandings of impairment, illness, or disability. In arguing that individuals should not be required to submit to unpleasant medical interventions simply because such technologies had been developed, bioethics was trying to wrest control from what it perceived to be a technology-happy medical establishment and return decisional authority to individuals. As represented in major works (Beauchamp and Childress 1994; President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research 1982, 1983; Reich 1995), bioethics insists that individuals should be able to determine the situations under which they find life intolerable but has never challenged them to ask themselves what they found intolerable. Nor has bioethics suggested that what was unacceptable might not be inherent in quadriplegia, stroke, or a degenerative neurological disorder but instead could result from the social arrangements facing people living with such conditions. Although bioethics has been the means of challenging unbridled uses of technology and of calling for protections for participants in medical research, most bioethics literature has never contested prevailing notions of what it means to have an illness or impairment or to be a person with a disability. Rather, bioethics has presumed impaired mobility, physical deformity, sensory deficit, atypical learning style or speed, or departures from what was customary in energy, stamina, or flexibility to be the reason why people with disabilities would be less educated, less likely to be working, often in poverty, and more socially isolated than people who did not have impairments. When it concerns life with disability, most people who call themselves bioethicists have viewed having a disability from within what Gliedman and Roth (1980) and Bickenbach (1993) term the medical or biomedical model, as contrasted with a minority group (Gliedman and Roth 1980; Hahn 1983) or social model (see Shakespeare and Watson, this volume) of disability. Disability community critics of standard bio-ethics reject the medical model of disability, with its belief that functional impairment leads to an unacceptable, unsatisfying life. The critics do not demand to use theological or “sanctity-of-life” values; they claim that even on “quality-of-life” measures, a life with disability can be rewarding.
Health, Normality, Disability, and Quality of Life
Defining terms such as health, normality, impairment, and disability continues to pose problems and cause controversy for bioethics and for disability studies. Their meanings are not clear, objective, and universal across time and place and are contentious even for contemporaries in the same culture, profession, and field. A look at the controversy within bioethics and the policy about which variations from the typical or average are impairments, which behaviors should be considered health problems, and which should be viewed as social or moral problems will reveal how difficult it is to come up with a clear and widely shared understanding. The bioethics literature contains extensive discussions about how to define health. For people such as Christopher Boorse (1987), a person is said to be healthy if the person’s organism performs species-typical functions with statistically typical efficiency. Matters for debate within bioethics include whether health should be defined as the absence of disease (Boorse 1987) or as a state of well-being, as the World Health Organization proposed (Purdy 1996); whether the well-being in question includes mental and social well-being in addition to physical well-being; and whether disease can be defined neutrally or only with reference to a culture and a historical period. (Compare Boorse 1987 with Caplan, Engelhardt, and McCartney 1981; Engelhardt and Wildes 1995; Purdy 1996 for arguments about the importance of cultural and historical location in ascribing impairment; see Wasserman, this volume, for detailed discussion of this entire topic.) Virtually everyone engaged in the debate over a definition of health or impairment is convinced that individual physical, cognitive, and emotional characteristics are evaluated with reference to what is expected or desired by way of functioning and role performance for a girl or boy, woman or man. Operating within the medical framework and the worldview of bioethics, health is prized because “impairments of normal species functioning reduce the range of opportunity open to the individual … [to] construct [a] plan of life’ or conception of the good’” (Daniels 1985:27). Congenital disability, chronic illness, traumatic injury, malnutrition, and the aging process occasion departures from “species-typical functioning” and constitute differences from both a statistical average and a desired norm of well-being, although such departures are reported to affect one-sixth to one-fourth of the world’s population.
Those who embrace either the social or the minority group model of disability contend that medically oriented understandings of impairment contain two erroneous assumptions. First, the life of someone with a chronic illness or disability (used interchangeably throughout this article) is forever disrupted, as one’s life can be temporarily disrupted by the flu or a back spasm. Second, if a disabled person experiences isolation, powerlessness, poverty, unemployment, or low social status, these are inevitable consequences of biological limitation. Bioethics generalizes from the problems and disorientation that some people may experience at the onset of a disability and assumes that such disruption is unchanged by rehabilitation, adaptation, mastery of new means to accomplish desired ends, or changes in the life plans one pursues. Bioethics also fails to recognize the extent to which disadvantages experienced by people with disabilities arise through society’s lack of accommodation to the different methods of performing valued activities such as learning, communicating, moving, or taking in the world. On the contrary, say disability studies scholars and disability politics. First, life with disability is not the unremitting tragedy portrayed in medical and bioethics literature. Second, the culprit is not biological, psychic, or cognitive equipment but the social, institutional, and physical world in which people with impairments must function—a world designed with the characteristics and needs of the nondisabled majority in mind. An impaired arm becomes a manual disability or social handicap only because of the interaction of a particular physiology with a specific social, legal, and attitudinal environment.
In the minority group or social models of disability, rules, laws, means of communication, characteristics of buildings and transit systems, the typical eight-hour workday, and aesthetic preferences all exclude some people from participating in school, work, civic, or social life. When medicine and bioethics discuss the importance of health care, urge accident prevention, and promote healthy lifestyles, these professions perceive that a certain level of health and functioning serves as a prerequisite for the “normal opportunity range” or for an acceptable life (Daniels 1985). According to the more recent thinking, by contrast, disability is a fact of human life, and thus everyone gains if societies refashion the social and physical world to ensure the comfortable participation of all people with their diverse range of capacities. While desirable, health and medical care do not hold the keys to “the normal opportunity range” or to a satisfying life.
For the past three decades, scholars and activists in disability have argued that the problem of disability was, indeed, one of denial of civil, social, and economic rights and not one of biology and health. Yet, the attitudes toward disability and the assumptions about the impact disabled people have on families and society that abound in medicine and bioethics all compel those scholars and activists to assert that the first right of people with disabilities is a claim to life itself, along with the social recognition of the value and validity of the life of someone with a disability (D. Wasserman, personal communication, 2000).
A substantial body of literature reveals that even before legal and political advances in the United States and other nations, but certainly since then, many people with disabilities have found satisfaction in their lives that was far greater than anything expected of them by members of the health and rehabilitation professions (Albrecht and Devlieger 1999; Cameron et al. 1973; Cushman and Dijkers 1990; Eisenberg and Saltz 1991; Goode 1994; McNair 1996; National Organization on Disability 1998; Ray and West 1984; Saigal etal. 1996; Stensman 1985; Woodrich and Patterson 1983). These data reveal that people who experience disability—whether it be congenital or acquired, whether sensory, cognitive, motor, or other—can find considerable reward and satisfaction in their lives. When people with disabilities report unhappiness or dissatisfaction (a minority in every study), the sources resemble sources of un happiness in the lives of nondisabled people—inadequacies in financial security, work, or social and personal relationships. As Albrecht and Devlieger (1999) point out, sometimes impairment-related factors, such as pain and fatigue, contribute to unsatisfying relationships or to the difficulty of holding a job, but the frustrations come from difficulty in incorporating the impairment into existing interpersonal and institutional life. Studies of “quality of life” consistently reveal that for people with disabilities, satisfaction results from achieving a harmony in their lives that can include a sense of meaning, performing expected social roles, enjoying give-and-take in their relationships, and having a sense that they live in “a reciprocal social world” (Albrecht and Devlieger 1999:984).
Unfortunately, not only doemergency room physicians, who deal with traumatically injured people, fail to appreciate that people with disabilities are able to lead satisfying lives postinjury (Gerhart et al. 1994), rehabilitation specialists also dramatically underestimate life satisfaction of people with disabilities. This is found to be true regardless of the length of time the professionals had been in the field or the number of people they had worked with (Bach and Tilton 1994). Over the years, many reasons have been offered for the gap in understanding that persists between people with and without disabilities regarding the potential for life with disability to be acceptable, rewarding, or as rewarding as the lives of people who do not report impairments. Gill (forthcoming) suggests that these persistent gaps in understanding stem from the lack of equal-status contact between clinician and patient, the crisis nature of much medical contact that rarely extends beyond the immediate medical setting, the lack of education about the social realities of life with disability in the curricula of medical professionals, and the particular psychological makeup and socialization of many who enter such professions, convinced that rationality, control of life events, and optimal workings of the human organism are the goals toward which to strive. Like many in the medical professions, bioethicists are typically highly educated individuals who prize intellect, rationality, and the goal of human health. Few bioethicists identify as people who have impairments or as members of the disability rights movement. The values and perspectives of bioethicists profoundly influence their assessments of the quality of life of persons with disabilities and in turn influence central debates about how or whether to use such assessments to settle questions of clinical decision making or resource allocation. From within the disability rights community (Carlson 1997) and from within the bioethics world (Edwards 1997; Veatch 1986), researchers have stressed that the esteem given to intellect, rationality, and self-awareness leads some to question the moral status or life quality of persons with cognitive impairments (Singer 1993, 1996; Steinbock and McClamrock 1994; Tooley 1986). It is not only cognitive impairment that calls the value of life into question. The emphasis on self-sufficiency leads others to doubt that anyone who cannot execute “normal” life tasks of eating, walking, or managing personal hygiene could enjoy life as much as someone who performs these tasks without human assistance (Shelp 1986). For other commentators, even if people themselves could find their lives acceptable, the impact of their reduced-life opportunities on family and society is thought negative and burdensome (Beauchamp and Childress 1994; Callahan 1988; Morreim 1995).
In virtually every instance of a disability rights critique of bioethics literature or of decision making in bioethics cases, the issue has revolved around the assessment of an author or a court that impairment provides a reason to deny medical intervention or to provide less treatment than would have been the case had there been no impairment. In discussions about withholding treatment from newborn infants with impairment, ending life-sustaining treatments for adults with disabilities, refusing to treat a new condition because of an individual’s uncorrectable disability, or tolerating physician-assisted suicide, the disability critique is similar. Most bioethics literature and most legal decisions in bioethics cases conclude that the impairment reduces the quality and value to others and to self of the life lived and therefore justifies less effort at preservation or recovery. If people with disabilities like their lives more than others believe, it does not support ignoring the justice claims of the minority group or social models, a point taken up later in this chapter. It is a claim that substitutes myth with data that medicine and bioethics must grasp if they are to change in their handling of the many dilemmas faced by people with disabilities, their families, and the societies in which they live.
Disability and the Right to Live in the World
The disability community has expressed its outrage at mainstream bioethics when bioethics has supported claims that life with disability should not be maintained. The most prominent examples of this debate have flared in the contexts of family decision making, when people with disabilities have sought to stop treatments or to request physician assistance in dying. Family decision making about the lives of people with disabilities usually occurs in three situations:
- Decisions of parents regarding treatment for infants or minor children who will have impairments after intervention but who might die without treatment,
- Decisions by prospective parents about whether to bear children who would have disabilities, and
- Decisions about relatives who may not be able to decide for themselves about treatments.
People with disabilities may themselves choose to forego treatments that keep them alive, or they may request physician assistance to end their lives. Although all these contexts share many common themes, each situation has had its own history and deserves some separate comment.
The Case of Newborns with Impairments
In the early and mid-1980s, U.S. disability rights adherents first challenged bioethics over decisions about standards of treatment for infants born with significant disabling conditions requiring immediate medical treatment. Should physicians counsel parents of children with conditions such as Down syndrome who also have heart problems or intestinal blockages to let the infant die rather than treating the heart condition or the intestinal blockage that would leave the infant with Down syndrome? Should parents of a child with spina bifida be permitted to refuse surgery that would close the child’s open spine and reduce the potential for infection? Should parents of a child with bowel obstruction consent to surgery to remove a necrotic bowel to save the child’s life, even though long-term survival of a child with such an obstruction is estimated at less than 1 in 10,000? In yet another instance, should a severely premature baby be placed on a respirator against the wishes of the baby’s parents if chances of survival are nearly negligible? (See Weir 1984.)
For bioethics, there were many questions embedded in these novel situations. Were infants with no chance of survival experimental subjects for physicians determining the efficacy of new treatment modalities? In situations of uncertain prognosis for low-birth-weight or premature babies, should physicians initiate treatments that might be ended if the child would never be able to go home with his or her family? Suppose parents wanted an infant to be treated aggressively but physicians declined based on assumptions of intractable pain or disability for the infant or heartache for a family raising a seriously disabled child. Should parental decision making, based on what the parents believe to be their family interest or in the interest of their minor child, take precedence over medical expertise?
Physicians, lawyers, and philosophers had discussed these issues among themselves for at least a decade (Duff and Campbell 1973; Fost 1982; Kohl 1978), and many believed it acceptable or morally desirable for parents and doctors to end the lives of infants who would remain disabled after all medical interventions. The major national ethics body believed that parents could be decision makers for their infants under most circumstances but argued that they could not refuse medical treatments that would clearly benefit babies if the reasons for their refusal stemmed from concerns about familial, as opposed to patient, well-being. Its recommendations included the following guidelines:
- Parents should be the surrogates for a seriously ill newborn unless they are disqualified by decision-making incapacity, an unresolvable disagreement between them, or their choice of a course of action that is clearly against the infant’s best interests.
- Therapies expected to be futile for a seriously ill newborn need not be provided….
- Within constraints of equity and availability, infants should receive all therapies that are clearly beneficial to them. For example, an otherwise healthy Down Syndrome child whose life is threatened by a surgically correctable complication should receive the surgery because he or she would clearly benefit from it….
- The best interests of an infant should be pursued when those interests are clear.
- The policies should allow for the exercise of parental discretion when a child’s interests are ambiguous. (President’s Commission 1983:6, 7)
Interestingly, these recommendations were being crafted before members of the disability rights movement, along with the U.S. government and the general public, became acquainted with these dilemmas by Bloomington, Indiana Baby Doe and Long Island, New York Baby Jane Doe. The first, a boy with Down syndrome and an esophageal blockage, was born in 1982 and died of starvation at six days old, after his parents decided not to treat the blockage because of the advice given to them by their physician about life with Down syndrome. This event may have occasioned the specificity of the published recommendations by the President’s Commission. In late 1983, parents of the girl who became known as Baby Jane Doe declined surgery for their daughter born with spina bifida and hydrocephalus because physicians advised them that without treatment, she would die more quickly.
Despite the President’s Commission guidelines of 1983, professionals and the public remained deeply divided about the morality of insisting that medicine save babies who would live with disabilities. Rationales for withholding treatment focused on the physical suffering and pain of the potential treatments as well as the impairments themselves; the conviction that technology was being used to sustain children who would have short, painful, and miserable lives regardless of what was done for them; the anguish for parents who had to watch a child die slowly after enduring fruitless medical procedures; disappointment for parents who would not have the healthy child they expected and desired and might instead have to raise one who would always have disabling conditions; and belief that the millions of dollars spent for such treatments were better spent in other ways (Kuhse and Singer 1985; Shelp 1986; Tooley 1986).
Legal cases were brought on behalf of infants whose parents and physicians were refusing to provide what others perceived as beneficial treatments (Bowen v. American Hospital Association 1986; Weber v. Stony Brook Hospital 1983). Bioethicists continued to debate the merits of the President’s Commission guidelines and the U.S. government’s 1984 legislation deeming refusals of beneficial treatments child abuse, which was punishable by withdrawals of federal funds from hospitals that participated in such treatment denials (Child Abuse Amendments of 1984, PL 98-457). Many opponents viewed the legislation as infringing on family privacy by compelling parents to raise children who would otherwise have died without technology and who often would remain alive with significant medical problems and physical, sensory, or cognitive impairments. Many suspected that some instances of under treatment of ill and disabled infants would be replaced with overtreatment of those who would never survive to live with their families or go to school. They suspected that the government’s purpose lay not in protecting the civil rights or rights to life of the disabled infants but in using the question of disabled new borns as another weapon against those who supported abortion as a woman’s right (Caplan and Cohen 1987; Murray and Caplan 1985; Rothman 1986).
Notably, people with commitments to disability rights perceived “Baby Doe” cases differently. Perhaps for the wrong reasons, the U.S. government was committed to the rights to life of infants with disabling conditions, and it thus backed the legislation that became the Child Abuse Amendments of 1984, calling for treatment of newborns unless the infant was likely to die regardless of the intervention. The intense academic, legal, and public discussion included almost no published voices from within the U.S. disability rights movement until after the passage of the 1984 legislation (Asch and Fine 1984; Asch 1986, 1987; Biklen 1987; Hahn 1987; Hent off 1987). Perhaps because most statements appeared in disability-focused rather than bioethics publications, these views never appeared to modify the mainstream bioethics discussion of the topic. Disability critics explicitly rejected the government’s pro-life agenda, pointing to the difference between a newborn infant, which no longer needed one particular woman to sustain its life, and a fetus residing in a woman’s body (Asch and Fine 1984).
Concentrating on infants with treatable medical conditions who would resemble others with Down syndrome or spina bifida, the disability rights critics went beyond the patient-focused language of the President’s Commission guidelines. They argued that denials of beneficial treatment represented a kind of discrimination against people with disabilities by the medical profession and frightened parents who were unable to imagine having a child with a disability as anything but a tragedy and disaster for themselves and for their nondisabled family members. After all, critics argued, when treatment for intestinal or heart problems is given to a baby without Down syndrome but denied to one who has Down syndrome, the physicians and parents based the decision on the infant’s uncorrectable impairment and on their beliefs about the kind of life that the child and family would have. If denying beneficial medical treatment to a nondisabled infant constituted child neglect or abuse, denial of that same treatment to one with a disability was equally an abuse. Disability rights critics of standard bioethics discussion pointed to the social nature of the problems of disability, arguing that the baby with Down syndrome or spina bifida belonged to a despised minority that parents feared for their child and for themselves. They emphasized the stigma of disability (Goffman 1963), the “disabling images” permeating society (Gartner and Joe 1987), the erroneous belief that a disabled child or adult contributed nothing positive to family or society (Darling 1979; Fine and Asch 1988), and the notion that people with disabilities (and sometimes their families) became part of a social movement to combat their disadvantaged minority status and could draw from that movement an alternate sense of community to counteract isolation from and rejection by the majority (Asch and Fine 1984; Biklen 1987; Hahn 1987; Hentoff 1987).
Picking up this thread of the disability rights argument, the U.S. Commission on Civil Rights (1989) discussed the stigma and the minority group nature of disability in its report, titled provocatively Medical Discrimination against Children with Disabilities:
The birth of an infant with a disability typically comes to them as a great shock, with feelings of depression, anger, and guilt. Because most parents have had little or no interaction with people who have disabilities, their assessments of their infants’ conditions and prognoses may have little basis, and they thus turn to the attending physicians for information and recommendations…. Physicians with a bent toward denial of treatment for persons with disabilities can be quite insistent in conveying negative information. There appears to be near unanimity from health care personnel who support treatment in a Baby Doe situation as well as those who oppose treatment that, in all but a handful of cases, the manner and content of the medical provider’s presentation of the issue will be decisive in the parental decision whether to authorize treatment.
Unfortunately, there also exists misinformation among many health care personnel and bioethicists advising parents on the advances and alternatives available to children with disabilities. (P. 2)
The U.S. Supreme Court and many within bioethics reject the idea that denying treatment to newborns with disabilities constitutes any kind of legally recognizable discrimination covered by Section 504 of the Rehabilitation Act of 1973 or, by extension, the Americans with Disabilities Act (Bowen v. American Hospital Association 1986). They reject the discrimination argument for several reasons. First, physicians and hospitals (covered entities under antidiscrimination legislation) do not make the treatment decisions but implement those of parents. In addition, many of the infants who need some type of medical procedure require interventions unique to their impairment that no unimpaired infant would need; therefore, the situations of most critically ill, low birth weight, or premature babies differ from the paradigmatic Down syndrome complicated by treatable medical conditions that fueled the governmental and disability rights positions.
In the year 2000, most infants with Down syndrome and spina bifida born in the United States received medically indicated treatments, as did premature and low-birth-weight infants who—if they survived the treatments—became part of the disabled population. Neonatologists and bioethicists seem to believe that the contemporary question for treatment of newborn infants is one of overtreatment rather than undertreatment. Thus, the President’s Commission writings, the Child Abuse Amendments of 1984, and whatever recognition the disability rights movement has achieved all have combined to ensure that most babies who can benefit from medical interventions do receive them.
Most of U.S. bioethics literature now concentrates on other topics, although there are no public retractions of views that enraged the disability rights movement. The furor over the appointment of philosopher Peter Singer to a chair in ethics at Princeton University arises from his published views about life with conditions such as Down syndrome, spina bifida, hemophilia, and other sensory, cognitive, and physical impairments. The frequently cited Singer’s position is the following: “The killing of a defective infant is not morally equivalent to the killing of a person; very often it is not morally wrong at all” (Singer 1993:184). Singer acknowledges that children and adults living with these conditions may have satisfactory lives, but he continues to claim that their impairments necessarily render their lives less satisfactory than the lives of people without such impairments. Consequently, he maintains that parents would be justified in killing newborns with these conditions to replace the impaired child with a healthy one, who would bring more happiness to the family and would experience more happiness. However, he insists that once people with disabilities pass perhaps one year of age, they have the rights to life of anyone without a disability so long as they have rationality, self-consciousness, and self-awareness and can differentiate past from present or future (Singer 1999). Not surprisingly, Singer’s beliefs about disabled newborns offend people with disabilities who claim a kind of social kinship with infants who might have conditions similar to theirs. Thus, Singer’s insistence that his views do not apply to adults and older children who make up the membership of Not Dead Yet, ADAPT, and other similar protest groups has not mollified their opposition to his views or to the visibility and prestige accorded his work.
Prenatal Testing and Selective Abortion
As the 1980s saw bioethics and disability advocates contending over the topic of providing treatment for disabled infants, the 1990s carried out a very similar debate about the implications of the growing tendency to use many prenatal tests to get information about the status of fetuses in utero. Worldwide, disability organizations, disability rights activists, and theorists have taken up the question of how the increasing use of prenatal testing and selective abortion affects the place of people with disabilities in the world. Prenatal testing has involved no court cases or expensive and complex technologies, but the themes in the prenatal testing debate echo those on all sides of the questions about disabled newborns. By the 1990s, bioethicists, civil libertarians, health professionals, and the public generally accepted the idea that a live-born infant should get medical treatment to provide a chance at life. However, the vast majority of theorists and health professionals still argue that prenatal testing, followed by pregnancy termination if an impairment is detected, promotes family well-being and the public health. To them, it is simply one more legitimate method of averting disability in the world.
Although sometimes prenatal testing occurs outside of a plan to abort based on results of the test, most people who seek testing plan to abort the fetus if they learn of a disability (Beaudet 1990; Rinck and Calkins 1996; Wertz 1995). According to Wertz and Fletcher, who surveyed geneticists in 18 countries, in addition to the goal of helping people decide about their own family planning, most geneticists subscribe to what some view as “eugenic” goals—namely, the following:
A majority (74%) believes that improvement of the general health and vigor of the population is important. A smaller majority (54%) subscribes to a eugenic goal, a reduction in the number of carriers of genetic disorders in the population. (Wertz 1995:1654)
Standard justifications include the following:
Attitudes toward congenital disability per se have not changed markedly. Both pre-modern as well as contemporary societies have regarded disability as undesirable and to be avoided. Not only have parents recognized the birth of a disabled child as a potentially divisive, destructive force in the family unit, but the larger society has seen disability as unfortunate…. Our society still does not countenance the elimination of diseased/disabled people; but it does urge the termination of diseased/disabled fetuses. (Retsinas 1991:89, 90)
In the absence of adequate justifying reasons, a child is morally wronged when he/she is knowingly, deliberately, or negligently brought into being with a health status likely to result in significantly greater disability or suffering, or significantly reduced life options relative to the other children with whom he/she will grow up. (Green 1997:10)
The parent’s harms … include emotional pain and suffering … loss of opportunities, loss of freedom, isolation, loneliness, fear, guilt, stigmatization, and financial expenses…. It might also be added that parents are harmed by their unfulfilled expectations with the birth of an impaired child….
Parents of a child with unwanted disability have their interests impinged upon by the efforts, time, emotional burdens, and expenses added by the disability that they would not have otherwise experienced with the birth of a healthy child. (Botkin 1995:36–37, emphasis added)
Parens and Asch (1999) describe the disability rights critique of prenatal testing as follows:
Rather than improving the medical or social situation of today’s or tomorrow’s disabled citizens, prenatal diagnosis reinforces the medical model that disability itself, not societal discrimination against people with disabilities, is the problem to be solved…. In rejecting an otherwise desired child because they believe that the child’s disability will diminish their parental experience, parents suggest that they are unwilling to accept any significant departure from the parental dreams that a child’s characteristics might occasion…. When prospective parents select against a fetus because of predicted disability, they are making an unfortunate, often misinformed decision that a disabled child will not fulfill what most people seek in child rearing. (P. S2)
The disability critique argues that the practice and the rationales for it are misinformed about the nature of disability and morally problematic in the attitudes they connote about both disability and parenthood. The above rationales for the practice are of three types. First, people with disabilities are more costly to society than others, and society should use its resources for children and adults who will not have impairments. Second, either the lives of disabled children are so miserable that they are not worth living at all, or they are more miserable than the lives of nondisabled children are expected to be. Third, the lives of parents and family members will be harmed by the psychological, social, and economic burdens of caring for the child, and these burdens will not be offset by the expected psychic and social rewards of raising a child without a disability.
Disability rights criticism of prenatal testing stems neither from general opposition to abortion nor from misgivings about technology. It is aimed at professional support for testing and abortion for some particular group of characteristics but not other characteristics, suggesting that health professionals, bioethicists, insurers, and policymakers believe that the births of people with some set of characteristics should be prevented. Pro-choice opposition to prenatal testing for disability shares much with those in bioethics who oppose using the technology to avert the births of children of a particular sex. Suggesting that prospective parents select against an otherwise-wanted child because of its gender or disability implies that people who exist with these characteristics might be less desirable to others and less happy themselves than people with different characteristics. The critique is aimed at changing the way that the technology is described to prospective parents, as well as at persuading professionals and parents that they have inaccurate ideas about disability and are using testing out of myth and stereotype rather than current information about how disability affects a child’s or family’s life.
Critics contend that this practice differs from other actions that prevent disability and should not be compared with prenatal care for women, vaccinations for children, or health promotion for everyone. Selective abortion prevents disability not in an existing human being or in a fetus likely to come to term but rather prevents disability by preventing the fetus from becoming a person with a disability. It connotes that if people do not meet a certain health standard, they should not be welcomed into the family or the world (Asch 1989; Borth wick 1994; Newell 1999). Susan Wendell (1996) expresses these views well when she writes,
I would be terribly sorry to learn that a friend’s fetus was very likely to be born with ME [myalgic encephalomyelitis or chronic fatigue immune dysfunction syndrome], but I would not urge her to abort it. In other words, many people with disabilities, while we understand quite well the personal burdens of disability, are not willing to make the judgment that lives like ours are not worth living. Every life has burdens, some of them far worse than disability. (P. 154)
Most of the disability rights opposition to selective abortion comes from those who are committed pro-choice advocates who seek to persuade families and society that they do not need to abort based on disability. Critics do not seek to ban the practice, but they believe that aborting a particular fetus differs from aborting any fetus because a woman does not want a child (Fine and Asch 1982; Finger 1990; Kaplan 1994; Morris 1991; Saxton 1984; Shakespeare 1995, 1998). They respond to each of the claims offered for prenatal testing by arguing the following:
- Even if every disability diagnosed prenatally were followed by abortion, it would not materially reduce the prevalence of disability in the world or the need for society to change to better include those with impairments (Asch 1999).
- As contrasted with the claims of Green (1997) or Purdy (1995), who perceive a disability as an unacceptable infringement on a child’s “right to an open future” (Feinberg 1980), people with disabilities frequently enjoy their lives and do not generally perceive them as blighted by tragedy even if their impairments impose some constraints on them. Furthermore, such constraints, as are purportedly imposed by physical, sensory, and cognitive endowments, may be diminished or eliminated by societal changes to better include all citizens (Asch 1999).
- Most families raising children with disabilities are not ruined by the experience, and, on average, families including disabled children fare as well as other families on measures of well-being and family functioning (Ferguson, Gartner, and Lipsky forthcoming).
Marsha Saxton (1998) expresses well the sense of offense experienced by many disability rights critics when she says,
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 … fighting for this issue, our right and worthiness to be born, is the fundamental challenge to disability oppression; it underpins our most basic claim to justice and equality—we are indeed worthy of being born, worth the help and expense, and we know it! (P. 391)
Most disability rights opponents of prenatal testing and selective abortion would not claim that the practice is “eugenic” because few governments compel it (Shakespeare 1998). However, the very offer of testing for some characteristics, but not all potentially diagnosable ones, connotes that only some characteristics are worth the expense and trouble to avoid (Press 2000). Thus, prenatal testing is a social decision, expressing societal views, and a direct challenge to the societal claims to include people with disabilities as full citizens and participants in the moral and human community.
The disability critique includes the idea that the sentiments behind offering and using prenatal testing and abortion to avoid bringing children with impairments into the family and the world will ultimately undermine parental appreciation of any children they raise. Pro-choice disability critics agree that if a prospective parent makes a considered decision that the family or the child will have an unacceptable life based on parental hopes and values, abortion should be available. They caution that such assessments may be misguided about both the nature of disability and the nature of parent-child relationships. Every life, every family, and every parent-child relationship contain disappointment as well as delight, and prospective parents may be misguided and misinformed about parenthood and shortchange themselves and any children they raise by adopting a selective approach to parenthood (Asch 2000).
The disability rights challenge was little noticed by bioethics during the 1980s, but in the 1990s, bioethics has examined it, even if most mainstream bioethics and medicine remain unconvinced or hostile (Buchanan 1996; Green 1997; Purdy 1995). The most detailed and systematic dialogue between bioethics and disability studies on prenatal testing has taken place through a project sponsored by the well-known bioethics organization, The Hastings Center, and this project has resulted in a deepened understanding of the issues (Parens and Asch 1999, 2000). Without accepting all of the disability-based arguments, however, some disability organizations and bioethics panels have urged health professionals to revise the methods of providing information to people contemplating prenatal testing that would present disability in a less negative light and would discuss it from within a social as well as medical framework (Dunne and Warren 1998; International League of Societies for Persons with Mental Handicap 1994; Little People of America 1999; National Down Syndrome Congress 1994; Parens and Asch 1999, 2000; Shakespeare 2000).
Making Life-Or-Death Decisions for Others
One of the first famous bioethics cases is that of Karen Ann Quinlan, a young woman who sustained brain injuries in 1975 that left her in a persistent vegetative state, unable at first to breathe without mechanical respiration and, then after breathing on her own, unable to eat except by tube feeding. For patients with impairments as multifaceted and significant as Quinlan’s, the disability rights movement has not organized to oppose court decisions to terminate treatment. However, for the same reasons that people with a disability rights perspective have protested the bioethics analysis of treating newborns with impairments, they are likely to oppose views that would deny treatments to people no longer capable of making decisions because of Alzheimer’s disease or stroke. They would probably oppose the reasoning of courts and philosophers who would deny treatment for cancer to people with significant cognitive impairments.
Just such cases occurred in the late 1970s and early 1980s, and state courts in Massachusetts and New York reasoned and ruled in very different ways, reflecting different assessments of how a cognitive impairment should influence treatment decisions. The highest court in the state of Massachusetts declined to authorize a man with the reported mental age of a preschool child to receive chemotherapy for his leukemia, concluding that he would not understand the purpose of the painful procedures and that they would therefore drastically reduce an already minimal set of life activities and perceived quality of life (Superintendent of Belchertown State School v. Saikewicz 1977). Four years later, the New York Supreme Court decided, more in keeping with a disability rights view of quality of life, that a middle-aged man with what was described as profound developmental disability with the capacities of a very young child should receive treatment for cancer. The reasoning was that without the treatment, he would die, but with it, he could maintain most of the activities he enjoyed at the state facility in which he lived (In re Storar 1981). In this situation, interestingly, the court ignored the expressed wishes of the man’s mother, even though she reportedly visited him daily but urged that the treatments be withheld and that he be allowed to die.
In the views of many disability community commentators and some from within mainstream bioethics, even a demonstrably loving and involved family may be unable to put aside its own view of how limited life with disability is to imagine such a life from the vantage point of someone with the impairment. Cancer may seem like a way out after years of being involved with a relative who has had a lifelong cognitive impairment. The family may experience so much distress when a spouse’s, parent’s, or child’s recent disability deprives him or her of much-valued mental capacity that they cannot appreciate life as it is left to their loved one or get beyond their own sense of grief, weariness, or burden occasioned by spending time with the person in his or her new state. For all these reasons, people with a disability rights perspective are wary of “family” as decision makers for conscious, minimally aware, or otherwise cognitively disabled people who appear to enjoy some parts of their lives. If family members must decide questions of life and death for relatives whose condition deprives them of legal authority to assert them, a disability rights view might insist that quality of life should be judged from the patient’s current vantage point. Such a method would take account of current activities and satisfactions, rather than judging life from the perspective of the nonimpaired family members or the formerly unimpaired individual.
Current thinking in the worlds of disability and bioethics reinforces the principle of self-determination for people making major life decisions. Most cognitive impairment does not leave individuals without some means of understanding their own situation or expressing preferences about how, where, and with whom they wish to be involved (Wehmeyer 1998). Given this outcome, it should be possible for people with nearly any disabling conditions to communicate about whether they find life and medical treatments worthwhile and acceptable to them. Bioethicists Buchanan and Brock (1989) support framing questions of “competence” as ones of decisional capacity. They recognize that persons unable to examine all long-range implications of a situation might nonetheless be able to provide valuable information to ultimate decision makers about their preferences and thus meaningfully participate in decisions about their lives and well-being. Several recent discussions by professionals familiar with people who have cognitive disabilities endorse a set of methods that would enable people who may not achieve the status of legal “competence” to express their wishes and reveal their decisional capacities and views (Midwest Bioethics Center 1996; Rinck and Calkins 1996). Making complex decisions obviously requires that medical professionals, family, and others working with a develop mentally disabled or communicatively impaired person take the time not only to explain diagnoses, prognoses, and possible treatments but also to ascertain the patient’s questions, fears, concerns, and desires. Giving truly informed consent necessitates a high level of patient-professional conversation that all too rarely takes place even when the patient has no additional cognitive or communication disability. As Katz (1984) explains, the standard of information and conversation should not merely assume a generic “reasonable person” but should recognize the unique concerns and needs of each individual facing a treatment decision. Rinck and Calkins (1996) remind us that people with disabilities may be especially subject to conforming to the desires of others:
Social pressures which inhibit voluntary decisions are magnified for people with disabilities who have been allowed few choices…. Pressure from providers or health care professionals may cause individuals to feel that, if they disagree to certain therapies, privileges will be reduced. Even when individuals with a disability do not feel coerced, there is a tendency to acquiesce…. It is difficult to ascertain when a decision is truly the individual’s choice and not influenced by outside forces. (P. 42)
Most bioethicists contend that people could eliminate or reduce the problems of family decision making if everyone would create an “advance directive” for themselves expressing their preferences if they one day cannot make their own wishes known. Alternatively, they could name a health care proxy, who would act on their behalf. Such legal documents might assist families and health professionals to deal with treatment decisions for the millions of people who lose some of their cognitive and communicative abilities through stroke, Alzheimer’s disease, or the like. However, it would not be of help to the lifelong disabled of the world. Moreover, “living wills” or advance directives pose questions about whether individuals want particular medical procedures, rather than asking people to imagine how they would feel about life after a medical intervention. They do not aid people in considering which capacities and activities represent the essential components of an acceptable life. Even the most carefully written and thorough statement is subject to misinterpretation by professionals who may be convinced that they are better at knowing the views of the impaired individual than any form could convey. From the standpoint of disability rights, the most serious flaw of advance directives is that asserted by bioethicists Dresser and Robertson (1989), who criticize the “orthodox” reliance on any advance statement of preferences. People who are not living as individuals with disabilities and cannot imagine that their lives as disabled would be satisfying make such advance statements to them. Like the President’s Commission discussion of treatment decision making for infants that urges assessment of benefit from the viewpoint of the patient and not the family or the society, Dresser and Robertson urge that nondisabled people acknowledge the value of disabled life and evaluate treatment decision making from the perspective of the now-disabled individual. Dresser and Robertson’s point is a valid corrective to quick assessments that “Mom would hate living like this” or “my brother’s advance directive was explicit about not wanting to stay alive if he could not hear or speak” when the child or sibling observes that mother and brother appear to take great pleasure in the activities and experiences that remain possible for them. However, as Buchanan and Brock (1989), Dworkin (1994), and Nelson (1995) discuss, people care about more than their current experiences. Even a seemingly content person with significant dementia might prefer that his or her wishes not to live in a disoriented, demented state be carried out by following a validly executed advance directive.
For situations in which families typically are expected to act on behalf of those who cannot make their wishes known, disability rights adherents remain skeptical about the good faith of much purported family decision making. Fearful of covert or overt bias against a now-disabled or lifelong-disabled family member who never provided an advance directive, and convinced that people without disabilities doubt the value of life with an impairment, those holding a disability rights perspective would look to governments and courts to protect the interests of vulnerable individuals and would seek all methods to improve the chances that disabled people themselves will participate in these decisions. It is crucial for anyone seeking to advance the dignity and worth of people with all disabilities to promote their participation in life-and-death decisions and to circumscribe family decision making on behalf of those who have less than full legal authority to make their own decisions.
Deciding about Life and Death: Disabled People as Decision Makers
In 1983, just as the U.S. media brought the question of treatment for babies to the attention of the public and raised the consciousness of people with disabilities about medical treatment as a civil rights issue, a young woman with cerebral palsy and arthritis named Elizabeth Bouvia asked a hospital in California to keep her comfortable, sedated, and let her starve herself to death. Then in her 20s, Bouvia had lived with significant disability throughout her life. During the previous few years, she had been married and divorced, miscarried a wanted pregnancy, experienced her mother’s illness and her brother’s death, had been forced to move several times because of family problems and inadequate personal assistance services provided by the state, and was compelled to withdraw from graduate school because the dean believed her disability precluded her from becoming a master’s-level social worker. Yet, when she sought help from the American Civil Liberties Union (ACLU) to support her right to die, she and the ACLU based her claim on the pain, humiliation, and difficulty of her disability. Customarily associated with championing the civil rights of minorities, the ACLU argued that Bouvia had this right to die because her disability caused her a “pitiful existence,” referred to her “affliction” as “incurable” and “intolerable,” and portrayed the “indignity and humiliation of requiring someone to attend to her every bodily need” (ACLU Foundation of Southern California 1983:14, 17, 35). In 1986, the California Superior Court accepted this understanding of disability and agreed that she had a right (as did any other competent adult) to end medical treatments that helped her live. The court reasoned in part,
She, as the patient, lying helplessly in bed, unable to care for herself, may consider her existence meaningless. She cannot be faulted for so concluding…. Her mind and spirit may be free to take great flights, but she herself is imprisoned, and must lie physically helpless, subject to the ignominy, embarrassment, humiliation, and dehumanizing aspects created by her helplessness. (Bouvia v. Superior Court of State of California 1986:19, 21)
Desires of people to end their lives if they faced illness and disability were familiar to bioethics, and although mainstream bioethics considered family decision making for incompetent patients complex and controversial, North American bioethics was almost unanimous in the belief that competent individuals should be able to decide when they found treatments and life so burdensome that they wanted treatments to end, even if the end of those treatments meant the end of their lives. By the time the Bouvia case reached the courts, most bioethics professionals and most case law opposed actions of medical staff who treated patients against their expressed wishes. By contrast, bioethicists endorsed the rights of competent adults to remove themselves from medical treatments and facilities, even if by doing so they ended their lives (President’s Commission 1983).
Most of the cases that bioethics had discussed, however, concerned individuals who were very likely to die from the conditions for which they needed treatment. The Bouvia situation, as well as others that engaged people from within the disability community, differed in that they concerned people who could live for decades if they continued using assistive technology. With conditions of spinal cord injury, multiple sclerosis, and amyotropic lateral sclerosis (ALS), their functional limitations resembled those of many leaders of the disability rights movement and disability studies. Bioethicists who observed the court proceedings equated Bouvia’s request with those of imminently dying people who wanted to avoid prolonging their lives by a matter of days, weeks, or months. Using reasoning similar to that offered by the California courts in the Bouvia situation, the New Jersey Supreme Court in 1987 supported the decision of a woman with ALS to end her life (In re Farrell 1987).
Most disability movement theorists and activists then and now construe these decisions to stop treatment entirely differently. They agree that people with disabilities deserve to have their views respected. However, they argue that such end-of-life decisions arise because people with disabilities have experienced constant discrimination, denials of information about life possibilities, inability to obtain legally available services and supports, and often abandonment by family and friends. They assert that despair and depression about life prospects cause people to give up on life, just as depression and despair cause people without disabilities to end life for all sorts of reasons.
In a statement offered during 1983 regarding Elizabeth Bouvia’s circumstances, the Disability Rights Coordinating Council emphasized that Bouvia’s depression easily could have been the response to extreme life stresses (miscarriage, divorce, illness and death of family members). A nondisabled person would have been treated for depression under any one of these circumstances, but psychiatrists and attorneys attributed all her despair to the pain and humiliation they perceived as inevitable in someone with a significant disability. The disability rights group also pointed out that many of the constraints that Bouvia and the experts working with her attributed to her cerebral palsy actually could be traced to California’s denial of the maximum amount of personal assistance services legally due her or to the discriminatory attitudes of the university that had refused to have her continue in the master’s program. As in family decision making about the lives of disabled people, the disability rights view located problems not in the biology of cerebral palsy but in the society in which the person with cerebral palsy found herself. Many people with similar disabling conditions were living on their own, working, and involved in significant relationships and activities. Her problems deserved solutions to improve her life. If Bouvia were to be educated in a more welcoming institution, obtain more personal assistance to increase her access to community life, rebuild or create loving personal relationships, and accept disability as a part of her identity rather than reject it and the community of disabled people available to support her and fight with her for dignity, perhaps she might regain a sense of hope and a desire to live.
These themes play out in all the subsequent right-to-treatment and even physician-assisted suicide discussions of the past two decades. In 1984, voices of the disability community were virtually ignored by physicians, bioethics, the courts, and the media in discussing Bouvia’s rights, despite eloquent statements in a major U.S. disability movement publication, Disability Rag (Johnson 1984). The one bioethics panel called together to examine specific questions of disability and rehabilitation published views with resonances of a disability critique of medicine’s attitude toward disability and the consequent willingness to help people with disabilities end their lives. In a report on ethical issues in disability and rehabilitation, Caplan, Callahan, and Haas (1987) called for an educational model on the part of professionals working with disabled people, especially if they are treating people shortly after the onset of disability. Patient and family autonomy may be overridden in the early stages, they suggest, to aid people in having more genuine autonomy later on.
If autonomy consists in the ability to make informed, voluntary choices about the course and direction of one’s own life then it is necessary for persons to understand fully the options and opportunities that are available to them. When the onset of impairment is sudden and unexpected, it may take time for persons and their families to comprehend and adapt to the reality of their condition. While such persons may be competent to make decisions, they may not fully understand or be prepared to listen to the information that health care providers or those with impairments wish to convey. In this sense it may be necessary to allow for an infringement of autonomy in the shortrun in order to ensure that subsequent choices are truly reflective of informed, voluntary deliberation. (Caplan et al. 1987:11)
Not many years after acquiring disabilities through accident or illness, several other people with disabilities have sought removal from life support systems such as ventilators and generally have been supported by bioethics and the courts. To the indignation of many in the world of disability, a well-known rehabilitation hospital permitted a man with a newly acquired spinal cord injury to be removed from his life-sustaining ventilatory support without exposing him to similarly disabled people successfully living and working in the community (Asch 1990).
Key to the different appraisal of these stories by members of the disability community is the understanding of concepts of dependence, independence, and interdependence. Asch (1990), Disability Rag (Johnson 1984), and the Disability Rights Coordinating Council (1983) have argued that bioethics and the courts misunderstand the meaning of independence. Like the newly disabled people themselves, professionals construe the physical inability to execute life tasks such as dressing, toileting, or moving from place to place as synonymous with dependence and leading to inevitable feelings of embarrassment and humiliation. Disability rights adherents contend that independence need not be viewed in physical terms; rather, self-direction, self-determination, and participation in decision making about one’s life are more genuine and authentic measures of desirable independence or, better, interdependence. It is no more demeaning to obtain help in dressing or washing from a personal assistant than it is to get services from an auto mechanic, a plumber, or a computer technician. With personal assistance provided to people as a respected form of employment, disabled people can proudly take their places as workers, parents, community volunteers, and citizens. Dependence occurs only when disabled people are deprived of such assistance and forced to live in institutions or in homes of relatives who resent the tasks they are expected to perform. With adequate personal assistance services, methods of communication, guaranteed health care, and confidence that a disabled person can still be valued by family and community, there might be fewer requests to stop treatment (Asch 1995; De Jong and Banja 1995; Johnson 1984; Litvak, Zukas, and Heumann 1987).
Unfortunately, calls for greater involvement of people with disabilities on hospital ethics committees, use of experts with a disability rights perspective to analyze the requests of disabled people about end-of-life care, and greater use of independent living centers as training opportunities for newly disabled people and health practitioners have not yet brought greater disability sensitivity within bioethics or hospital practice (Asch 1990, 1998; Gill forthcoming). As Herr, Bostrom, and Barton (1992) discussed in their review of several treatment refusals by people with disabilities who were not terminally ill and who could conceivably have lived for decades had they been given the financial, social, and psychological tools to do so, these people believed that they had “no place to go” and that death was their only tolerable option to being imprisoned by life.
In the time that the bioethics debate shifted from ending life-prolonging treatment to physician-assisted suicide, the voice of disability rights has emerged in the discussion and has occasionally influenced the mainstream bioethics literature and legal decisions. Two strands of the ideology of the disability rights movement offer different but valuable additions to standard bioethics discussions of the proper role of the medical profession, the difficulty in establishing a prognosis of terminal illness, and appropriate safeguards to ensure the voluntariness of any request for physician assistance in dying (Annas, Glantz, and Mariner 1996). The ideological strand of disability rights that stresses self-determination and that asserts their similarity in temperament, talent, and beliefs to the nondisabled vigorously argues that disabled people are no more vulnerable to coercion, pressure from family, or victimization by society than anyone else and that they may actually benefit from legalized assistance in dying. The Coalition of Provincial Organizations of the Handicapped (COPOH) of Canada joined Sue Rodriguez in her bid to get court approval for physician assistance in her death. Bickenbach (1998) explains their reasoning this way:
Persons with disabilities who are or will become unable to end their lives without assistance are discriminated against by the prohibition of assisted suicide since, unlike persons capable of causing their own deaths, they are deprived of the option of choosing suicide…. Being legally prevented from pursuing a legal option, on the basis of physical disability, is discriminatory…. Disabled persons have been historically victimized by stereotypical attitudes about their abilities and worth, coupled with a paternalism that has undercut their right to self-determination. Denying people with disabilities the option of suicide is an example of this unequal treatment, and must be resisted as demeaning and discriminatory. (P. 124)
Those disability theorists in the United States who stress the need for decisional autonomy are offended by what they see as the paternalism and assumption of victimization that lead some prominent members of the disability rights community to oppose legalizing physician-assisted suicide. Batavia (1997) and Silvers (1998) advocate legalization because they endorse autonomy as a supreme value and see no evidence that people with disabilities are any more likely than others in the population to succumb to external pressures to end their lives. Disability rights opponents of legalizing physician assistance in dying argue from the ideological strand that stresses inequality of the social arrangements that now prevail for people with disabilities. They contend that contemplating the legalization of the practice in a world of prejudice, unequal treatment, inadequate health care, unreliable social services, and frequent familial rejection is increasing the disadvantages of today’s disabled people.
Bickenbach (1998) points out that COPOH (in supporting physician-assisted suicide) and Not Dead Yet (in opposing it) held many similar views about the devaluing of people with disabilities in the wider society and differed principally in how they perceived such a practice would influence their shared goals of improving life for disabled people. He reflects that “when an individual chooses death as the only way of escaping from an intolerable situation, it is perverse and unfair to say that this is an expression of self-determination or autonomy” (p. 128). Opponents of physician-assisted suicide point out that the way in which its supporters justify such suicide speaks to the very prejudices, stereotypes, and devaluations that have created a movement for disability rights. Quoting Bickenbach again,
It is telling that … there is never any suggestion that the right to physician-assisted suicide should extend to people who do not have a severe disability. Implicit in the judgments themselves … is precisely the prevailing prejudicial social attitude that having a disability is a sensible reason for committing suicide.
Perhaps proponents of physician-assisted suicide would be steadfast in their view even if it meant that qualified doctors could patrol school grounds waiting for despondent but mentally competent seventeen-year-olds who, having failed geography or been unable to find a date for the prom, might want to use their assisted-suicide services. (P. 130)
Opposition to the trends to approve of physician-assisted suicide sparked the formation of the direct-action protest group Not Dead Yet, which has dedicated itself to bringing the voice of the disability rights movement into the public debate about bioethical issues. Not Dead Yet joined with another U.S. protest group, ADAPT, to oppose the activities of Jack Kevorkian, the pathologist who has assisted in more than 130 deaths of people with disabilities in the past decade. They also joined to submit an amicus brief to the U.S. Supreme Court in its two cases dealing with physician-assisted suicide and to protest the hiring of Peter Singer by Princeton University.
In its amicus brief to the U.S. Supreme Court, Not Dead Yet (1995) contended that physician-assisted suicide would substantially harm existing people with disabilities as follows:
Many doctors conclude that lives of people with severe disabilities are not worth saving, solely because of their disabilities…. These people represent the extent of discrimination that exists in our society; with appropriate treatment and services, many of them would be alive today. It is against the backdrop of these and other cases, reflecting society’s growing support of a “right to die” for people with severe disabilities, that your amici request protection from the very real threat to the lives of people with disabilities that will result from a right to assisted suicide through active measures.
Not Dead Yet (1995) explicitly argued that if physicians were ever permitted to aid people in ending their lives, such assistance could be considered discriminatory if it were available only to terminally ill or disabled people. Singling out people with disabilities and terminal illnesses as people who might want to end their lives is itself a way to express the view that perhaps they should want to do so because their lives are understandably of less value to them and to others than would be the lives of despondent but nondisabled persons.
Not Dead Yet can take heart in knowing that some of its concerns have reached the policy and legal worlds. While not adopting all of Not Dead Yet’s analysis, the U.S. Supreme Court does recognize the particular prejudices that people with disabilities already endure. In refusing to support the constitutionality of a right to assistance in dying, the court noted the “negative and inaccurate stereotypes,” “societal indifference,” and the “cost-saving mentality” that form the current context in which ill and disabled people decide about ending or continuing their lives (U.S. Supreme Court 1998:387). Because most of the people who have sought to end life-prolonging treatments or to obtain physician assistance in dying are people who have been disabled for only a few years, there is reason to suspect that they are indeed more vulnerable to demoralization than Silvers, Batavia, and COPOH might wish. Bioethics and disability rights need the kind of dialogue about how to respect autonomy while providing useful information and how to implement the model proposed by Caplan et al. (1987) that took place on the issue of prenatal testing through the Hastings Center and that has begun through the auspices of the University of Newcastle (Policy, Ethics and Life Sciences Research Institute 2000). What are the appropriate safeguards to forestall claims that there was no informed consent before people made life-ending decisions? In a world that asserted the value of life for everyone, regardless of health status, people with disabilities might be no more likely than any other segment of the population to consider ending their lives. In a world that still systematically reduces the life chances for people with disabilities, the disability rights movement should fear a right to physician assistance in dying when there is so little medical or social assistance in living.
Emerging Issues and Necessary Dialogues
The most bitter clash of views between disability rights and bioethics has occurred in life-and-death situations, but the clash between medical and social models of disability pervades several other areas of bioethical discussion that warrant notice here because they need attention from disability studies. Some disability theorists and activists have invoked the history of Nazi exterminations and forced sterilizations of people with disabilities to claim that contemporary debates over physician-assisted suicide or uses of prenatal testing are precursors to future wholesale state-sanctioned persecution of disabled people (Gallagher 1990). In fact, fears of a Nazi label are probably enough to keep governments and medical professionals from blatant persecutions. The devaluation and deprivation take more subtle forms that can only be acknowledged but not explored because of space limitations. The stigma and devaluation of life with disability are demonstrated in the acquittals or light sentences when professionals or family members take it on themselves to end the lives of disabled children, parents, or spouses (Shipp 1985). In the Netherlands, a country with both universal health care and legalized physician-assisted suicide, many disabled people have died by lethal injections they themselves did not request. However, the physicians performing these acts have not been prosecuted for murder (U.S. Supreme Court 1998). Yet another example of devaluing people with disabilities arises in the continuing abuses of people with cognitive impairments who become research subjects without their informed consent (Brody 1998; Dresser 1996). Bioethicists who consider reproductive liberty and the rights to procreate as fundamental human rights have neglected the problems of people with disabilities in pursuing parenthood.
Forced sterilization still occurs to people with many disabling conditions, especially those with cognitive or emotional disability, in nations such as Australia, Spain, and Japan (Bosch 1998; Cordner and Ettershank 1997; “Japan Says Forced Sterilizations” 1997). People who need personal assistance with household and daily life activities face obstacles to parenthood if they cannot acquire any additional services to help with child care. Neither bioethics nor the disability rights movement has undertaken an in-depth discussion of what social accommodations may be justly due to those people who can experience the rewards of parenthood only with some amount of physical assistance or decisional supervision.
Stigma, Quality of Life, and Access to Health Care
Sometimes people from cultural minorities in the United States, those committed to feminist politics, and people from other parts of the world criticize standard Western bioethics for focusing on flashy, high-tech questions of acute care medicine and ignoring the day-to-day realities of creating an accessible, compassionate, and just health care system that meets ordinary needs (Flack and Pellegrino 1992; Warren 1992). A chief concern for the disability community arises in the context of access to health care itself and whether—if at all—an individual’s existing impairments should influence the types of services he or she receives. Of course, physicians must be aware of someone’s blood pressure or cardiac condition before prescribing certain medications or treatment regimens for other conditions; some drugs may counteract medications being taken for a different medical problem. However, disability has sometimes been used invidiously to deny people available treatments from which they could benefit. In discriminating by patient, for example, someone with Down syndrome may be denied a kidney transplant, based on a conviction that he or she could not comply with treatment requirements or an evaluation that rated life with Down syndrome as less worthy of the scarce resource than the life of someone without that impairment. In recent years, just such factors delayed or denied organ transplants, kidney dialysis, and other interventions to people with Down syndrome and dementia, based on the presence of the impairment (Goldberg 1996; Patterson 1999). Rationing by service is also a way to harm people with particular conditions if providers, insurers, or national health plans specifically exclude payment for some procedures or limit coverage so that only mild forms of a condition will be treated. Physical impairments may be treated without an annual or lifetime insurance cap, but psychological problems are subject to very low annual or lifetime caps for payment in the United States. A national health service may elect to cover treatment for some psychological disorders but not others, provide payments for treating male-factor but not female-factor infertility, or provide expensive therapies for cancer but not for AIDS.
Some commentators have examined the implications of antidiscrimination legislation for changing the heretofore unquestioned decisions of medical professionals, finding that laws such as the Americans with Disabilities Act should aid people with disabilities in asserting their claims to beneficial health care without reference to the service needed or to others’ perceptions of the quality of their lives with or without treatment (Brock 1995; Mehlman, Durchslag, and Neuhauser 1997; Orentlicher 1996). Orentlicher (1996) argues that the provisions of the Americans with Disabilities Act and similar rights legislation in other countries could be used to end the disparate treatment of people with disabilities in access to services:
The equal worth of each individual suggests that we may want to give two persons equal opportunity for a particular treatment even if one would gain a smaller benefit from the treatment because of a coexisting disability. Indeed, we may want to give priority when allocating resources among different services and different patients to the persons whose health is worse to begin with even if those persons would benefit less from treatment. (P. 86)
The U.S. discussions are taking place in the context of proliferating HMOs and other managed care arrangements seeking to establish cost-saving policies. Allocation decisions that differentially (and often negatively) affect the world’s people with disabilities are explicit in the guidelines of some national health service plans and are implicit in physician decisions to withhold medication or services from those considered to have significant impairments. Believing that health care expenditures must be controlled to save money for other social goals, professionals, governments, and nonprofit agencies are eager to find rational methods of allocating health care dollars and staff. Several different methods have been proposed that would allocate health care based on its presumed effect on the recipient’s “quality of life” (Brock 1993). Bioethics and health policy, with input from disability studies, must grapple with the philosophical and empirical questions arising in any discussions of resource allocation schemes: Should priority be given to those considered “worst off,” as Orentlicher (1996) suggests, or should priority be given to those whose presumed quality of life after care would be high? As Wasserman (this volume) explains, different allocation schemes would have vastly different results for the world’s disabled population. If societies choose to provide care to improve the conditions of “the worst off,” as Orentlicher proposes, people with disabilities could receive care based on being considered worst off. However, if they choose to provide care to those expected to derive the most benefit in terms of maximal quality of life, stereotypes about how disability lowers life quality could limit the care they receive.
Even if experts or nations achieved consensus on the version of social justice that should guide allocation decisions, there would be conceptual and empirical difficulties in ascertaining “quality of life,” as Brock (1993) discusses in depth. However, it is worth noting the following urgent questions: From whose perspective should life quality be judged? If people with disabilities consistently indicate that their lives—even with problems—are more satisfactory to them than nondisabled people or health professionals believe, should their judgments be used in measuring life quality? If so, they might not be disadvantaged in allocation schemes because health professionals would cease being “distracted by disability” (Asch 1998). However, if nondisabled people, without experience of a particular impairment, become the judges of future life quality with impairments or if health professionals become the judges of life after impairment, this chapter and its references provide abundant evidence that people with disabilities in rich and poor nations will fare badly in allocation decisions based on expected quality of life (Brock 1993, 1995; Singer 1996; Tyson and Broyles 1996). If people in one country experience the same impairment differently based on a host of background factors such as culture, socioeconomic status, length of time with the condition, cultural beliefs, and race/ethnicity, should those background factors influence care offered to two people with the same impairment? If so, two people who could each benefit from similar treatment for hypertension, diabetes, or spinal cord injury might receive vastly different levels and types of services. The same background factors could mean that international agencies and governments might withhold available treatments from people with impairments in a poor nation that would be provided in one with greater economic resources.
David Wasserman (this volume) discusses the social justice questions that require a disability studies analysis. Yet I must reiterate how urgent it is for disability studies to oppose plans to ration care using a metric of presumed quality of life after treatment that would automatically give lower ratings to people with disabilities than to those without them. Virtually all such rationing plans could erode the gains made by the disabled population to obtain health care and other resources to ameliorate the negative impact of impairment on life and to increase opportunities for participation and equality.
Challenges from Bioethics: Justice, Variation, and Social Policy
Disability and Social Justice
The social and minority group models of disability claim that existing difficulties for people with impairments stem from the struggle to live in a world in which people’s bodies and needs have been overlooked. Whether calling for a rights approach to social change or grounding the call in the idea that such change removes barriers for everyone regardless of current physical, sensory, or cognitive equipment, both agree that people with impairments will lag behind others unless these calls are heeded. Disability rights scholarship has not included substantial attention to articulating theories of equality and social justice that would support their demands for change. Bickenbach (1993), Bickenbach et al. (1999), Shakespeare and Watson (this volume), Scotch and Schriner (1997), and Zola (1989) have acknowledged limits of a strictly rights-based, minority group approach.
On what moral grounds should society change to better incorporate the one-sixth to one-fourth of its members who have disabilities? How much change should be expected? If access to the built environment is measured by the ease with which a person who uses a wheel chair or one who is deaf or blind can come and go freely, is that standard arbitrarily narrow in ignoring design features for those who use gurneys for mobility or in overlooking the needs of those with environmental illness to attend public events? What constitutes appropriate auxiliary services or reasonable accommodation to ensure the participation of people with significant communicative, cognitive, or emotional disabilities in education and employment? If, after all existing barriers were removed, people with some impairment appeared unable to participate in ways they would choose, what other changes should occur to foster such participation? Universal design features will benefit everyone, and thus there is value in espousing the universalizing ideas of the social or human rights models of disability. However, certain services and accommodations (Braille books, one-to-one aides in classrooms, job coaches) may not directly benefit everyone, even though they provide indirect benefits through the increased participation of all citizens. What theory of social justice supports meeting those needs of small numbers of people?
In its efforts to discuss societal obligations to provide health care to citizens, bioethics has begun tackling the real-world applications of theories of justice and equality. Although most of the bioethics discussions do not go beyond health care to address the full range of societal changes necessary to improve the lives of people with disabilities, the writings of Brock (1995); Caplan et al. (1987); Silvers, Wasserman, and Mahowald (1998); and Veatch (1986) are valuable sources with which to explore such questions. Silvers et al. represent the necessary bioethics and disability studies dialogue that points the way toward systematic explorations of considering disability in constructing theories of social justice and of elaborating the grounds for claims to societal resources for people with disabilities. Their work and that of Bickenbach (1993) should be the first in an extended series of disability, bioethics, and social justice conversations.
According to the scholarship of the past 30 years, disability is best understood as a civil rights and social problem and not a health problem. Yet, as just mentioned, disability studies endorses the claim that at least certain definable functional characteristics, including some differences from species-typical functioning, warrant notice and social resources to permit full inclusion. What defines an impairment, as opposed to a characteristic (e.g., eye color or race) that no one would suggest working to change? Not all departures from what is “typical” are considered impairments since being taller, stronger, quicker, and more musical than average are perceived as gifts. We call for societal change to reduce both disability discrimination and racial discrimination, but we do not imagine making physical changes in people of one heritage to provide them with another genotype or phenotypic appearance.
It seems indisputable that the inability to read print, because of a visual or perceptual processing problem, differs from the inability to read arising from poor education. Information can be conveyed by nonvisual means for people with each type of reading difficulty, but the educationally deprived person may someday read with his eyes, whereas the blind person will not. A person who is deaf will always need some method other than spoken language to communicate with someone who does not know sign language; a Turk in Germany may eventually learn German and dispense with interpreters.
Disability studies should continue to affirm that disability is not the tragedy imagined by most health professionals and bioethicists; simultaneously, it should examine the philosophical, moral, and policy implications of the difference between physiologic and nonphysiologic explanations of the inability to perform certain activities. No social changes will permit a blind person to take in a sunset using sight, although society can eliminate its fixation that without such experiences, life is pitiful.
In effect, the minority group and social models both argue that society has obligations to incorporate all its members, with their varying range of physiological, cognitive, and sensory capacities just because environments and expectations may be easier to change than the physiological equipment with which one interacts in the world. Bioethics and medicine have perceived the inability to hear a symphony because one cannot hear as psychologically and morally different from the disinterest in hearing symphonies for those who can hear. One arises from choice; the other is not anything the individual can change. Progressive disability policy recognizes obligations to remove environmental barriers to participation if not in hearing of symphonies then in communicating with others in certain situations. Society may have more obligations to help someone travel who cannot use public transit because it is inaccessible than it does to help someone travel who could use the public system but dislikes doing so. Bioethics and medicine have overstated the negative impact of any constraint on life opportunity that might arise from physiology. In its effort to point out the constraints imposed by society, disability studies may need to give more attention to examining the impact of physiological constraints and the consequences of medicine’s and bioethics’ belief that any constraint is necessarily bad. Even if a disabling trait puts some limits on the hypothetical open future or opportunity range of the nondisabled, why is that a problem?
Trying to pin down what counts as an impairment that matters to life activity and trying to ascertain the moral or policy implications of the impairment category remain elusive and controversial. This is especially so when linked with discussions about whether it is appropriate or unethical for individuals or families to seek correction of impairments for themselves or for minor children. People with disabilities use the health care system for conditions related and unrelated to the characteristic that renders them part of the disabled minority. People with spinal cord injury get treated for high blood pressure or cancer and try to avoid secondary conditions; someone who is blind develops Parkinson’s disease and seeks treatment. As with nondisabled people, many who have disabilities take steps to stay healthy, and they support societal activities that improve the environments of homes, cities, and workplaces. They do oppose campaigns that spread false ideas about the tragedy of disability, but they do not object to efforts to improve public health (Wang 1992).
Yet what about possible efforts to “cure” or reverse disability by futuristic gene therapy, spinal cord regeneration, fetal tissue transplants, or the current cochlear implants? Such actual or potential medical interventions that would reduce functional impairment or restore species-typical function renew the exploration of what makes something an “impairment” that one might want to correct, as contrasted with a characteristic that no one would consider changing. Is being “short” a biological impairment or exclusively a socially constructed disability in a society that prizes height? There must be a place in the new paradigm of disability to discuss the question of when growth hormone might be a legitimate medical therapy and when it would be purely an enhancement (Parens 1998). If children or adults can gain some hearing from cochlear implants, are they morally obliged to have them, and should they lose access to interpreter services if they decline, as Tucker (1998) asserts? Are people morally obliged to obtain any therapies that would reduce impairment and would restore species-typical functioning? If the disability rights movement would endorse surgery for an infant with spina bifida to reduce mobility or cognitive limitations, is it equally acceptable to support parental interests in providing some hearing by virtue of a cochlear implant? Is deafness properly considered a culture and not an impairment (Crouch 1997; Lane and Grodin 1997)? When Davis (1997a, 1997b) objects to the cultural view and argues that lack of hearing places some limits on the hypothetical open future that parents should want for their children, is she making a claim that differs from a claim that parents of a child with spina bifida or a heart condition should seek treatment for such conditions to reduce the constraints that those conditions might impose? If so, why? If somatic cell gene therapy or germ-line gene therapy could safely correct detectable impairments in eggs, sperm, or embryos, should they become standard parts of medical care? Should people with disabilities support or oppose them as more versions of preventing people with disabilities from coming into the world? If some oppose such developments, do they object based on a view that disability represents a desirable form of human variation that should not be reduced by means that would reduce the births of people who might be members of the disabled population? Is having an impairment or being a person with a disability simply one form of inconsequential human variation, or even after society changes to better incorporate its disabled citizens, will impairment and disability always be seen as somehow negative or unfortunate rather than as one form of human variation? Bioethics and disability studies must work together to understand why health is valuable along with continuing to explore the meaning of impairment and disability.
Current disability studies or disability rights stresses disability as an acceptable form of human variation and urges that bioethics and the wider society learn from the disability experience about the appreciation of human diversity. It seems fitting to close this discussion of the intersections of disability studies with bioethics by affirming what bioethics can learn from disability studies. Longmore’s (1995) description of the values needed for people to accept the disabled are values that, he says, would change orientations toward another regardless of disability. They would change bioethics and society in ways that could surely promote human rights for everyone: “not self-sufficiency but self-determination, not independence but interdependence, not functional separateness but personal connection, not physical autonomy but human community” (p. 9).
These values imbue the recently developed statement on bioethics by Disabled Peoples’ International (2000), and it seems an appropriate conclusion to this examination of the intersection of disability and bioethics:
The Right to Live and to be Different
Nothing about us without us
Up until now most of us have been excluded from debates on bioethical issues. These debates have had prejudiced and negative views of our quality of life. They have denied our right to equality and have therefore denied our human rights.
We demand that we are included in all debates and policy-making regarding bioethical issues.
We must be the people who decide on our quality of life, based on our experiences….
We are full human beings. We believe that a society without disabled people would be a lesser society. Our unique individual and collective experiences are an important contribution to a rich, human society….
All Human Beings are born free and equal in Dignity and Rights
Human rights are the responsibility of the state as well as the individual. Disabled people, our organizations, families and allies must work to ensure that international, regional and national legal instruments include the implementation of rights throughout all scientific advances and medical practices concerning the human genome, reproduction, assessments of quality of life, therapeutic measures and alleviation of “pain and suffering.”
Biotechnology presents particular risks for disabled people. The fundamental rights of disabled people, particularly the right to life, must be protected….
That no demarcation lines are drawn regarding severity or types of impairment. This creates hierarchies and leads to increased discrimination of disabled people generally.
Disabled people must join together in solidarity to ensure our voices in these life-threatening issues.