I. ETHICAL AND SOCIETAL PERSPECTIVES

People who are physically or mentally disabled have many disadvantages. They may have an impairment, such as paralysis, blindness, or a psychiatric disorder, that reduces their ability to do things that nondisabled people do and may interfere with their fulfillment of socially valued roles. Also, disabled people often are subjected to various degrees of exclusion from the social and economic life of their communities. Political movements by disabled people to remove barriers and overcome discrimination, and protective legislation in several countries, have focused attention on the controversial concept of disability and on what constitutes just and compassionate behavior toward the disabled by individuals and institutions, including private employers, providers of public services, and schools. These ethical issues are pressing for all people because everyone can be disabled by trauma and because in societies in which life expectancy is long everyone may expect some impairments in old age.

This entry analyzes the concept of disability and its links to certain other concepts (impairment, handicap, health, and disease), explains the two competing explanatory models of disability, and surveys some of the ethical controversies that pertain to the nature of disability and the relationship between a disabled person and the rest of society.

Defining Disability: Conceptual Issues

The idea of disability and these related concepts are tricky to define. The conditions that often are referred to as disabilities are varied, including sensory losses, learning difficulties, chronic systemic illnesses and their effects (such as constant fatigue and pulmonary insufficiency), mental illnesses, lack of limbs, and lack of mobility. Do all these conditions have a common feature? Does every biological abnormality qualify as a disability? Does the availability of technological aids play a role in determining whether a bodily state is a disability? To what extent does being disabled depend on the environment in which a person lives? The very definition of disability is controversial; there is no single accepted definition.

The World Health Organization (WHO) of the United Nations offered the following definitions, which have been highly influential:

Impairment: Any loss or abnormality of psychological, physiological, or anatomical structure or function.

Disability: Any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.

Handicap: A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfillment of a role that is normal, depending on age, sex, social and cultural factors for that individual. (United Nations, 1983, quoted in Wendell)

Those definitions provide a good starting point but require fine-tuning. The distinction between impairments and disabilities is useful even though in some cases the distinction may be strained. The term impairment best captures a loss of or a defect in psychological, physiological, or anatomic features. Thus, paralysis of an arm muscle is an impairment, and inability to throw something is a disability brought about by that impairment, because it is a lack of the ability to perform an activity (throwing). Inability to throw a baseball is not an impairment or a disability; instead, in a person who would be expected to be able to throw a baseball it may be a handicap: a disadvantageous inability to perform a socially defined activity that is caused by an impairment and a disability.

Thus, not every impairment is disabling. An abnormal shape of the eyeball that prevents light from focusing properly on the lens is an impairment, but if the afflicted person can see perfectly well with glasses or contact lenses and carry out the same activities that other people can, that impairment is not disabling. One also can ask whether a disability is a handicap. Franklin Delano Roosevelt had a disability (he could not walk) that no doubt prevented him from fulfilling some social roles, but it did not prevent him from fulfilling the role of president of the United States, and so in that respect it was not a handicap.

Difficulties with the WHO Definitions

There are two main deficiencies in the definitions given above that should be remedied. First, they contain no account of what is normal or abnormal for human beings either in structure and function (as in the definition of impairment) or in the manner and range of performing an activity (as in the definition of disability). Second, only the definition of a handicap makes reference to disadvantage, yet intuitively, disadvantage, or at least inconvenience, is part of the concept of disability. Below are suggested improvements, although significant imperfections remain.

THE HUMANLY NORMAL AND ABNORMAL. An account of the type of abnormality necessary for the notion of impairment to be applicable is needed. What is normal human physiology, psychology, anatomic structure, and function? The topic is vast and controversial, and it is easy to go wrong.

A statistical account of normal structure and function would be misconceived. Even if all human beings were damaged in a nuclear accident, it would not be humanly normal to suffer from radiation sickness and sterility.

It is also not possible to define normal structure and function simply by listing all the body parts human beings are observed to have, what those parts are observed to do, and how they do it. This is not only because knowledge in this area is incomplete. If one simply observes human organisms, the list will include things frequently observed that never would count as normal. One would observe both sound and decayed teeth, both painful childbirth and painful urination, and both the beating of the heart and myocardial infarction (another thing the heart is seen to do), yet the second item in each pair is abnormal. The concept of a human organ and its function is inseparable from the concept of what is normal for human beings (an evaluative, teleological concept), and any definition of normality that refers to the functions of organs assumes the concept of the normal in the attempt to define it. (The biologist's concept of the function of an organ need not depend on cultural assumptions, however. It only presupposes the distinction between normal and abnormal.)

A partial account of the normal functions and abnormalities of body parts can be derived from an understanding of their role in the survival of the species. As Norman Daniels puts it (p. 28), the biomedical sciences, including evolutionary biology, provide an account of "the design of the organism" and "its fitness to meeting biological goals" relative to which a scientist can specify some normal and abnormal phenomena. However, the usual biological goal assumed in evolutionary theory—transmission of an organism's genes to the next generation—does not entail the abnormality of many intuitively abnormal conditions, such as the diseases of extreme old age.

Rather than abandon hope of a definition, though, it is possible to adopt the following crude and incomplete standard, which suffices for the issues surrounding impairment and disability and leaves the thorniest controversies aside. A state of a human being is an abnormality of the type that can make it an impairment only if the state is such that if all human beings had had it from the beginning of human prehistory and otherwise were as they in fact are now, the human species would have been significantly less likely to survive.

This is a necessary but not a sufficient condition of a state's being abnormal. That is, all abnormal traits are ones that probably would have precluded species survival, but not all states that would have precluded species survival are abnormal. States that are abnormal fulfill certain other conditions. There is no complete list of these conditions, but here are two of them.

The first requires a subsidiary definition. Some traits assist survival when they are present in some members of a population as long as other individuals have a different trait; however, if all individuals had the trait, the population could not survive. These can be called diversity-requiring traits. An obvious one is being male or female. Having some males has been indispensable to the species's survival over time, but if all individuals were male (from prehistory), the species would have died out long ago.

The other condition excludes from the definition characteristics that are universal in but are limited to human beings of a certain developmental stage. It is normal for newborn infants to be unable to walk, for example, even though if all human beings of all ages had always been unable to walk, the species would not have survived.

The definition of abnormality can be supplemented in light of this characterization. Thus, a state of a human being is an abnormality of the type relevant to impairment only if the state is such that if all human beings had had it from the beginning of human prehistory and otherwise were as they in fact are today, the human species would have been unlikely to survive. If the state (1) is of that kind, (2) is not a diversity-requiring trait, and (3) is not a trait that is characteristic of and limited to certain stages of human development, it is abnormal.

With this understanding of abnormality, one can say, with the WHO, that an impairment is any abnormal loss or other abnormality of psychological, physiological, or anatomic structure or function. This standard ensures that the abnormalities that qualify as impairments are ones that characteristically make a difference in living a human life, the typical life of the species, whether or not they cause a great loss for any specific individual in any particular set of circumstances. Thus, extreme myopia (nearsightedness or shortsightedness) is an impairment by this definition because if all human beings had had this characteristic since prehistory and otherwise had been the same as they are today, the human species would have been unlikely to survive. A hunter-gatherer society composed entirely of severely myopic people would be doomed. Yet severe myopia may not cause serious inconvenience to a person in a modern technological society.

IMPAIRMENT AND DISABILITY. The WHO definition of disability says nothing about disadvantage, whereas intuitively that seems to be part of the concept. People would not count it as a disability if someone were unable to perform an activity in the manner normal for human beings if it were an activity that that person, or perhaps everyone, had no interest in performing in that way. It is no disability to someone who has taken a vow of celibacy or has undergone voluntary surgical sterilization that that person is biologically infertile because it does not disadvantage that person even though it is an impairment.

Instead, one can define a disability as any impairmentcaused disadvantageous restriction or lack of ability to perform an activity in the manner or within the range that is normal for a human being. The relevant notion of normality is the same one identified above: that manner and range of activity without which the human species as a whole would have been unlikely to survive. Thus, extreme myopia, although it is an impairment, is not a disability for someone who suffers no consequent disadvantage because she or he has glasses or contact lenses that enable her or him to see perfectly.

Some people argue that a disability need not be disadvantageous. Anita Silvers (1994) gives the example of the great violinist Izhak Perlman, who walks with great difficulty yet has had a life of magnificent artistic accomplishment. However, it is surely to Perlman's disadvantage to have difficulty walking, as Bonnie Steinbock (2000) notes. A particular condition may be disadvantageous even for someone who is fortunate overall.

In light of these definitions impairments may disable a person to different degrees or in different ways in different societies, depending not only on the technology available (as with severe myopia) but more generally on the modes of living prevalent in the person's society, for example, whether the society is literate, whether it is agrarian or industrial, and the forms of transportation available in it. People with impairments also may confront varied cultural obstacles. In a society in which those born with bodily defects are regarded as cursed by the gods, for example, people with congenital impairments may be shunned, barred from most vocations, and reduced to begging. For a less extreme example, in a society in which attendant care is available only to those who live in institutions people who need the help of an aide to dress or bathe must be institutionalized. Someone with the same impairment might live in his or her own home in a different society. Consequently, some have argued that disability is purely a social construct. The degree of disability may indeed vary greatly as a result of cultural factors, however, as defined here, the impairment that causes disability is not fundamentally social in nature.

Handicap

The difference between a handicap as defined by the WHO and a disability as it has been defined here is that handicap employs a different concept of normality. A handicap results from impairment or disability, but it is a disadvantage that results from the consequent inability to fulfill roles that are normal, where what is normal is determined by social and cultural factors. Some activities, such as walking and seeing, are normal for human beings regardless of cultural expectations. If one cannot perform them, one is disabled in that respect. Other activities are normal for people in a particular type of society but are not expected or needed in others. If a person cannot perform them, that person will be handicapped in one society but not in another. Reading and using a telephone are normal activities in some societies but not in others, and so the inability to perform them, for example, because one is dyslexic or deaf, is not culturally abnormal and thus is not a handicap.

However, humanly normal activities may not always be clearly distinguishable from culturally normal activities. Often people perform their normal human activities by carrying out certain social roles that are dictated by their cultural and physical environment. Susan Wendell (1996) points out that a woman with impaired vigor might be able to obtain drinking water in the way that is normal in western Canada (turning on a tap) but unable to obtain it in the way that is normal in rural Kenya (walking a long distance to a well twice daily). Consequently, the distinction between a disability and a handicap is not always sharp.

Disadvantages Resulting from Prejudice

People with disabilities tend to be looked down on, ignored, discriminated against, and otherwise badly treated. Sometimes they are denied education or medical care or excluded from employment. Sometimes they are institutionalized or sterilized against their will. Sometimes they are subjected to violence or other forms of abuse. Often, especially but not only in poor countries, their needs for food and shelter are not met. Many nondisabled individuals are uncomfortable in the presence of the disabled and therefore exclude them from social life. Thus, at times the attitudes of their fellow citizens bar disabled people from carrying out the social roles of students, employees, spouses, and parents, causing their handicaps.

Impairment, Disability, Disease, and Health

The concept of impairment is closely related to the concepts of disease and health. Health commonly is defined as the absence of disease. Chistopher Boorse (1977) defines disease as an impairment of or limitation on functional ability, identifying disease with impairment. (However, he gives a statistically based account of functional ability, which was rejected here.) Norman Daniels (1985) defines disease as a deviation from the natural functional organization of a typical member of the species. He says that in characterizing "natural functional organization," the biomedical sciences draw on evolutionary notions and "claims about the design of the species" (p. 28), yielding an account of what is humanly normal that is close to the account given here. Thus, disease and impairment are nearly equivalent. Impairment is a slightly wider category because it includes the absence of a structure, and this usually is not called a disease. An amputee may be healthy (free of disease), yet that person is impaired.

Disability has been defined as an impairment-caused disadvantageous restriction on the ability to perform normal human activities or to perform them within the normal range. Because diseases are a subset of impairments, many diseases are causes of disability provided that they impose a disadvantage on the persons who have them. Thus, an infection is both a disease and an impairment, and it may cause disability (temporary or permanent) by disadvantageously reducing the ability of an afflicted person to perform humanly normal activities. Nondisease impairments such as the absence of a limb also may cause disability.

Two Models of Disability

There are two opposing, dominant ways of conceiving of disability: the medical model and the minority group model; the latter sometimes is called the disability rights model. These are explanatory models for understanding how and why disabled people are disadvantaged and theories of the appropriate means to ameliorate those disadvantages. These two ways of representing disability influence their advocates' positions on several ethical issues.

THE MEDICAL MODEL. According to the medical model, a disabled person's lack of ability to perform normal human activities can be traced entirely to that person's impairment: the abnormalities in his or her psyche, physiology, or anatomy. A paraplegic cannot get from place to place because her legs are paralyzed; a blind person cannot read because he cannot see. Disability is a result of the state of a disabled person's body. Consequently, the best way to remove the disadvantage is to correct the impairment medically, by means of surgery, drugs, physical therapy, prosthetics, and the like. Proponents of the medical model advocate vigorous treatment to eliminate impairments, extensive research to find cures for impairments for which no treatment is available, and prevention of future impairments. Prevention should be achieved by increasing the use of existing safety devices (e.g., in automobiles), developing new ways to avoid disabling accidents and illnesses, and identifying and encouraging healthful behavior in pregnant women (such as good nutrition and not smoking) to prevent the birth of children with disabilities. Some people also support preventing the birth of affected infants by using prenatal screening and abortion of abnormal fetuses or using genetic engineering when possible.

Many corrective medical interventions are performed successfully to prevent or eliminate disability, but many impairments cannot be corrected. When medicine cannot restore normal structure or function, the extent of the incapacity may be reduced. However, in many cases this cannot be done, and the person remains impaired and disabled. The disadvantages that person experiences may be substantial. At this point the medical model has little to offer to enable a disabled person to overcome her or his disadvantage. Because the disadvantage is understood to arise from the impairment, if nothing can be done to remove the impairment, it follows that nothing can be done to overcome the disadvantage.

THE MINORITY GROUP MODEL. According to the minority group model, although disabled people have physical, sensory, or psychological impairments, the principal source of their disadvantage is not the impairments but the impact on those people of the socially created environment. Because people with impairments are few in number and lack power and influence, they make up a minority group that is not taken into account in the physical and organizational design of facilities and institutions. Consequently, they are excluded from many mainstream activities. Thus, disability and handicap are only to a small degree the result of impairments; the disadvantages they involve, which can range from inability to attend a nightclub to unemployment and poverty, are largely the result of a lack of social inclusion.

Whereas the medical model explains a paraplegic's disadvantage solely in terms of the fact that that person cannot walk, the minority group model explains it by reference to the fact that buildings and streets are built in such a way that a paraplegic cannot maneuver a wheelchair into them or through them and therefore cannot go where he or she needs to go to conduct business, acquire an education, perform a job, or engage in recreation. A paraplegic is disadvantaged because she or he cannot do those things. Anita Silvers (1995) points out that streets and buildings would be made wheelchair-accessible if the majority of people in the society moved about by means of wheelchairs. Silvers makes this statement to show that it is their minority status, not their impairment, that causes the disabled to be excluded from so much of ordinary social life.

In contrast to the medical model, the minority group model claims that a great deal can be done to overcome the disadvantage component of disability for those whose impairments are not medically correctable. Society should be altered to make it much more inclusive. To continue with the example of a person who cannot walk, buildings can be fitted with ramps and elevators, cities can provide buses and taxis with wheelchair lifts, and doorways can be widened, enabling a wheelchair user to lead an independent life that is fully integrated into the community. Thus, a wheelchair user would experience vastly less disadvantage as a result of changes in society rather than by means of medical intervention.

According to the minority group model, in nearly all societies there is rampant discrimination against the disabled. This is the case because the built environment, the chief means of information gathering, and many forms of activity are suitable only for nondisabled people. As an analogy one can imagine that unknown to the builders, a widely used building material gave off radiation that had no effect on most people but gave intolerable shocks to one small ethnic group. Members of that ethnic group thus could not enter many buildings, including places they urgently needed to go to do their banking, pay taxes, and so on. This clearly would be unfair, if unintentional, discrimination.

According to the minority group model, this is exactly the way things are. Barriers to the participation of the disabled are present both in the built environment and in cultural institutions. For example, proceedings in classrooms, courts, and legislatures are impenetrable to people with sensory impairments. According to the minority group view this state of affairs is unjust. It imposes terrible disadvantages on disabled people that could be alleviated, and because it is society that unfairly excludes the disabled, society should remediate the situation.

The tension between the more widely held medical model of disability and the minority group model helps shape some of the crucial ethical debates over the moral treatment of the disabled.

Ethical Issues

Two main categories of ethical issues pertain to disability: issues concerning the value of the lives of disabled people and issues that concern the rights disabled people have and the grounds on which they claim those rights.

THE VALUE OF THE LIVES OF DISABLED PEOPLE. The ethical issues in this category are those related to the withholding of life-prolonging medical treatment, euthanasia, physician-assisted suicide, prenatal screening and abortion of fetuses with likely birth defects, and genetic engineering to prevent impairments in future offspring. Of course, these are areas of great general ethical controversy that raise many other issues.

When nondisabled people hear descriptions of a person's impairments, especially ones that result from sudden trauma to a previously unimpaired individual, they often react by thinking, "I would not want to live like that." That is sometimes the reaction of a disabled individual to his or her own losses. Robert B. White (1975) reports that at one point after his disabling accident Dax Cowart summarized his attitude by saying, "I do not want to go on as a blind and crippled person." That type of reaction helps explain why many regard the lives of people with disabilities as not worth living. However, those who have had time to adjust to their disabilities or have always lived with them are usually very glad to be alive. Although some disabilities may deprive a person's life of value, this cannot be assumed, and such an assumption, which may be unconscious, could lead to grave wrongdoing by caregivers and the legal system.

Euthanasia, withholding of life-prolonging treatment, and physician-assisted suicide. The question whether an individual should be kept alive by medical means (for example, cardiopulmonary resuscitation) or allowed to die as the result of a disease or injury and the question whether a person's death should be brought about by his or her own agency or that of others often arise when a person is terminally ill. However, they also may arise when a person has an incurable disease or another medical condition but can be expected to live for a considerable amount of time if given fairly standard medical treatments and food and water. Justifications for withholding a standard form of life-prolonging treatment from such a person or for taking steps to bring about that person's death usually appeal to the fact that as a result of the person's wretched medical condition, life is not a good to him or her. This may be the case if the person is mentally competent and requests death (usually because the medical condition causes unbearable suffering) or if the person is in a persistent vegetative state and is unable to have experiences of any kind or is an infant too young to make decisions who faces a very bleak future.

The appeal to autonomy. The refusal of life-prolonging treatment by a mentally competent patient is justified by an appeal to individual autonomy. A patient has a moral right to refuse treatment; this is an aspect of the fundamental moral right to autonomy, including decision-making control over what happens to one's body. Some people doubt whether it is ever morally permissible for a person to exercise the right to refuse treatment for the sole purpose of hastening his or her own death. However, there is wide agreement that if a patient does refuse treatment for any reason, provided that that person is mentally competent and well informed about her or his condition and prospects, it is wrong for anyone else to force the treatment on that person against her or his will. To do so would be an act of assault.

It is far more controversial whether the right to autonomy includes the right to commit suicide (rather than only to refuse treatment), and whether once a competent patient has decided to end his or her life a physician or another person may rightly assist him or her in doing that or may deliberately end that person's life at his or her request. Some defend the legitimacy of suicide as a rational and autonomous act, at least in the face of great and irremediable suffering that deprives life of its value. Others object to it even in such cases on the grounds that suicide is incompatible with respect for life. Physicians sometimes are asked to provide help in dying, for example, by giving lethal doses of drugs. Some argue that in cases in which the patient's life is not a good to the patient assistance with suicide is legitimate and indeed is a compassionate act. Others condemn this practice either because they condemn all suicide and judge it wrong to assist in a wrongful act or because they deem assisting with suicide incompatible with the role of a physician. Finally, some regard active euthanasia as incompatible with respect for life, indeed as murder, even when the killing is requested by the person who is to be killed. Others argue that euthanasia is morally justified when it is fully voluntary and the person's life is not worth living.

The incurable conditions that sometimes cause people to refuse life-prolonging treatment or seek physician-assisted suicide (PAS) or euthanasia (or because of which treatment is refused or euthanasia is sought on people's behalf) are often impairments and/or disabilities or are, like pain and nausea, the causes of impairments and/or disabilities. Among them are such conditions as the extensive brain damage suffered by Nancy Cruzan and diseases (and impairments) such as bone cancer, which causes disability by producing such overwhelming pain that the person cannot engage in normal activities. Thinking of a person who wishes to die as being disabled, as nearly always is the case, may change one's thinking about the ethical issues involved.

For those who oppose all euthanasia and PAS no moral conundrum arises with respect to disabilities in these areas: All such acts are wrong. For proponents of euthanasia and PAS, however, disabilities introduce some special dilemmas.

Many advocates of euthanasia and PAS tend to think of the matter as follows: Disabling conditions such as cerebral palsy, paralysis, and the type of permanent respiratory insufficiency that requires daily use of a respirator are incurable and can deprive life of its value for the afflicted person. If that person is mentally competent and refuses a life-prolonging treatment, saying that he or she prefers to die, these conditions are sufficient reason for that person to do so, and of course the request should be honored because it represents an exercise of individual autonomy. Even the opponents of euthanasia and PAS agree that treatment should not be forced on a person who is competent. If a person requests PAS or euthanasia, these are also sufficient reasons for it to be administered by willing parties according to this view. People with disabilities who seek death by starvation or the removal of a respirator have been hailed as champions of individual autonomy who attempt to exercise their rights against the resistance of officious healthcare institutions.

TWO ARGUMENTS AGAINST THE AUTONOMY-BASED APPROACH. There are two important counterarguments to this way of looking at requests to die made by people with disabilities.

The first is Carol Gill's (1992) suicide-prevention argument. Gill notes that when a nondisabled person undergoes a life crisis and subsequently shows certain behavioral signs and expresses a wish to die, that person is diagnosed with depression and is given counseling. He or she is regarded as less than fully competent because of depression and suicidal ideation. Gill observes a widespread assumption among nondisabled people, including healthcare professionals, that life with a disability is not worth living. Because of this, she argues, when someone with a disability expresses a suicidal wish, it is not classified as a symptom of curable, temporary emotional pathology. Instead, healthcare professionals regard the wish to die as rational because of their revulsion at the thought of living with a disability. They overlook standard clinical signs of depression and may disregard the presence of life crises or disappointments that are not related to the disability, such as loss of employment and divorce. Consequently, instead of providing suicide-prevention services, they encourage withdrawal of life-prolonging treatment, euthanasia, or PAS. If suicide-prevention services were provided, the disabled person might see adequate reason to live regardless of the disability, for once the depression was treated, the person would find life worthwhile. Thus, to advocate a right to die for the disabled is, at least in some cases, not to promote individual autonomy in decisions about life and death but instead to deprive the disabled of the suicide-prevention services routinely offered to nondisabled persons, a form of invidious discrimination.

The second, and related, counterargument arises more directly from the minority group model of disability. There is evidence that in some cases disabled persons seek death not because they find their impairments unendurable but because they are trapped in a dehumanizing social setting. Larry McAfee, for example, became so frustrated with his confinement to a nursing facility that he obtained a legal ruling that his ventilator be disconnected. Disabilities activists helped McAfee obtain job training and arrange to live outside the nursing home; he then decided to continue to live. According to this argument, what makes life unbearable to such people is not their impairments but the social world that subjects them to physical confinement and denies them decision-making power over their lives. Many people who are fairly severely disabled can, with assistance, do what McAfee did. However, government aid programs often refuse to provide the needed services outside an institution or the person is stymied by an unresponsive bureaucracy or excluded from jobs or housing by physical barriers or human prejudices. Thus, the disabled person's misery is caused by the choices and policies of other people. The person may seek death as the only alternative to living without basic dignity. In this view the ethical solution is not to allow or assist in the person's death but to free the members of this minority group from the oppressive conditions under which they are forced to live by implementing policies that promote independent living.

EUTHANASIA OF NEWBORNS WITH IMPAIRMENTS. Because newborn infants cannot make informed decisions about whether to end their lives, those who grant that some euthanasia is legitimate usually argue that such decisions should be made for newborns on the basis of whether a child's life will be of value to the child. The witholding of life-prolonging treatment is treated in the same way because there is no possibility in this case of informed refusal of treatment by the patient. According to the minority group model, infants born with incurable impairments may be wrongly killed because caregivers and parents assume that their lives would be entirely unrewarding even though many people with similar disabilities lead satisfying lives.

PUBLIC POLICY. Even if euthanasia or PAS for some disabled individuals were morally justified and not a result of depression or exclusion from independent living, some authors predict that if those options were made legal and routinely available, many morally unacceptable acts would result. They cite the difficulties of judging the mental competence of suffering patients who request death. In busy or understaffed hospitals people could be put to death who did not really want to die or were not really able to make a decision about it. Those authors mention the further danger that death may be sought not for the benefit of the person who dies but for the benefit of family members overwhelmed by the responsibility of caring for or paying for the care of an incurable individual or for the benefit of insurance companies and publicly funded healthcare programs.

This position creates a conundrum: Is it acceptable to adopt a policy that denies euthanasia and PAS to some people who are morally entitled to it, resulting in their prolonged suffering, to prevent the wrongful killing of others from carelessness, poor administration, or evasion of the law? Some argue that disabled people would be particularly vulnerable to being put to death wrongly under a policy of legal euthanasia or PAS because of the tendency of nondisabled people to expect a life with disabilities to be much worse for a disabled person than it actually is, the corresponding tendency of healthcare professionals and others to overlook the needs for treatment and other services, and the costs of providing for the disabled person's needs. Any such policy must include rigorous safeguards to prevent abuses and errors, but no safeguards are foolproof.

ABNORMAL FETUSES, PRENATAL SCREENING, AND ABORTION. Testing during pregnancy for a variety of genetic and other congenital abnormalities is available in many places. Familiar examples are the test for Down's syndrome performed by means of amniocentesis or chorionic villus sampling and the blood test for the alpha-fetoprotein level to gauge the likelihood of neural tube defects. Most prospective parents seek prenatal tests with the intention of aborting the fetus or embryo if it is found to have an abnormality. The tests that exist or will exist in the near future are for types of impairments that can be fairly severe, although some exhibit a great range of severity, and tests cannot show how severely or mildly affected a child would be.

Those who regard abortion as wrong in every case or defensible only in very limited cases (e.g., to save the life of a pregnant woman) must regard abortions of impaired fetuses as immoral. Antiabortion arguments usually are based on the thesis that an unborn human being, no matter how primitive its stage of development, has a right not to be killed (and indeed to be kept alive) because it is human. If a human fetus has a right to life from conception onward by virtue of its human genome and if abortion is therefore wrong, abortion is just as wrong when a fetus is affected by spina bifida or another abnormality as it is when a fetus is normal. According to this view these fetuses are surely human, just as are adult disabled people. The most common antiabortion position holds that human fetuses are already full-fledged persons with moral rights. Thus, impaired fetuses are also persons with moral rights.

Those who argue that abortion is wrong because of a being's potential to become a person rather than as a result of its actual personhood may have some flexibility to justify exceptions for fetal abnormality. However, many abnormal fetuses have the potential to fulfill the fundamental criteria of personhood and thus could not rightly be aborted even according to the potentiality theory.

Therefore, an antiabortion position opposes nearly all abortions of impaired fetuses. Some general opponents of abortion try to defend an exception for fetal abnormalities, but it is difficult to make that position logically consistent.

Those who regard abortion as often permissible (those with a "prochoice" position) may hold a range of different views that are based on various ethical principles and countenance abortions at different stages of fetal development or for different purposes. Some regard only early abortion as acceptable, for example, before sentience; others think abortion is acceptable later in pregnancy. Some regard abortion for frivolous reasons as unacceptable, whereas others regard it as legitimate for almost any reason as long as other criteria are fulfilled. However, most defenses of abortion attribute to an embryo or early fetus a moral status below that of persons and for that reason see nothing wrong with an early abortion chosen because the prospective parents would find it burdensome to raise a child in their circumstances. The presence of an impairment in an embryo or young fetus would count as such circumstances for many couples or pregnant women. Therefore, on the whole, according to the prochoice position, early abortion of an abnormal fetus is morally acceptable.

Furthermore, if a prochoice stance is assumed, there are positive reasons for aborting an impaired embryo or fetus. If the child were born, it might experience significant suffering, and raising a disabled child can be a great strain on parents and siblings. Indeed, a good prospective parent tries to produce a normal child rather than a disabled child and to give it advantages whenever possible. Bonnie Steinbock (2000) argues that given the prochoice assumption, selective abortion is a method of disability prevention that is comparable to a pregnant woman's taking folic acid to prevent neural tube defects. It also may be argued that the birth of disabled children is best avoided on the grounds that it drains resources from the healthcare system because those children may require multiple surgeries and other costly interventions.

THE DISABILITY RIGHTS CRITIQUE OF SELECTIVE ABORTION. Some authors who adopt a generally prochoice stance, however, argue specifically that abortion in response to fetal impairments is wrong. This has been called the disability rights critique of selective abortion. It consists of several distinct arguments, two of which are given below.

The expressive argument. The expressive argument is used both to show that the choice to abort an impaired fetus is wrong and at times that the government should not sponsor prenatal screening services. In this view aborting a fetus solely because it would develop into a disabled child expresses rejection of the disabled and perhaps exhibits the attitude that such children are undesirable or should not be born or the belief that the lives of all disabled people are miserable and lack value.

To express such an attitude is morally wrong for several reasons. For one thing the attitude is both erroneous and unfair. Many disabled people have good lives, and respect for the equal human worth of all individuals is one of the bases of morality. Also, aborting impaired fetuses, it is claimed, perpetuates bias against the disabled, just as selective abortion of female fetuses in certain societies perpetuates bias against women. Also, communicating a message of contempt to disabled people demoralizes them. Public funding of prenatal screening programs that people will use for abortion decisions does particular emotional harm because it shows public contempt and announces that society cares more about eliminating disabled people from the population than about helping those who are already born.

The main counterargument to the expressive position is that people who choose to abort impaired fetuses do not have the feelings or beliefs they are accused of expressing. Instead, their decision may be motivated by perfectly legitimate attitudes. Parents undergo special hardships in raising a disabled child that may include providing arduous or costly care well into the child's adult years. The desire to avoid those hardships is not tantamount to distaste or contempt for disabled people and does not stem from a belief that those people are all wretched. In light of the prochoice assumption, in aborting an early-term fetus with an impairment prospective parents choose not to produce a child who probably will suffer more and have more limited opportunities than a normal child does. The attempt to avoid those outcomes is part of the legitimate effort to do well for their families.

It should be noted that regardless of the actual attitudes of the agent, an action can convey an unintended but hurtful symbolic message, particularly if it is done in a context of widespread discrimination. However, this must be balanced against the central interests of adults in exercising reproductive freedom and making choices that determine the nature of their family life.

The cultural differences/social construction arguments. The arguments in this category focus on society's contribution to the phenomenon of disability. According to the minority group model, mainstream society causes much of the disadvantage inherent in disability by excluding disabled people from its central activities. Disability is socially constructed in this view. The way to eliminate the disadvantages of the disabled, then, is not to eliminate impaired people from the population through prenatal screening and abortion but to restructure society so that the impaired are included in it.

In addition, it is claimed that certain groups of disabled people form a distinct culture that should be respected. Defect-based abortion threatens to destroy that culture. This sometimes is claimed with respect to the Deaf (deaf people who identify with Deaf Culture, with a language such as American Sign as its central component). If too few congenitally deaf children are born, they will not be able to perpetuate their community.

Counterarguments to these claims turn on the shared assumption that appropriately early abortion is generally legitimate because the fetus is not yet a person with rights. Selective abortion does not kill off members of a society or participants in a culture; it simply makes it the case that there will be fewer people eligible to join the culture in the next generation. That harm to the culture must be weighed against the disadvantages impaired children would suffer if they were born. Even if society were made more inclusive, significant disadvantages would remain.

Disability and Genetic Intervention

Developments in human genetics offer the prospect of correcting or preventing impairments by means of genetic intervention. Of course, this would eliminate only impairments that are genetically based; it is irrelevant to impairments with other causes.

One use of genetics—testing for genetic abnormalities followed by the abortion of affected fetuses—was addressed above. There are also other uses. One may screen prospective parents for deleterious genes, and the carriers may choose not to reproduce or to have children by using donor gametes or transplanted embryos. In the future one may be able to modify the somatic genome of an existing person to eliminate impairment or modify a person's germ-cell DNA (the genome of a person's eggs or sperm) to prevent disabling impairments in future generations.

Because no life is terminated in these procedures (not even that of an embryo), there is no ethical objection to them from the perspective of the right to life even among those opposed to abortion in general. The ethical concerns that arise for selective abortion against a prochoice background, however, also apply to genetic techniques that prevent the conception of impaired fetuses, although with less force. For example, choosing not to have children or to use someone else's gametes to avoid producing a disabled child might express an attitude that devalues the disabled, although merely using contraception would do that less forcefully than abortion does. Programs of gamete donation and embryo transfer and techniques for altering genes in utero also would reduce the size of the disabled population and the number of participants in subcultures composed of people with particular disabilities, just as abortion does.

However, techniques that "switch off" or replace deleterious genes in living people or in gametes or fetuses that will be allowed to develop have a special defense against such criticisms. First, it is hard to see what could be wrong with treating a gamete, fetus, or already-born individual to correct or prevent a disabling impairment. This would be like treating a child with antibiotics to keep an infection from causing blindness, which is surely legitimate; it is a form of healthcare. Second, individuals who were denied available interventions and went on to develop disabling impairments would have moral grounds for complaint. The claims of disabled people not to be incrementally marginalized by decreases in their numbers and not to be given a discouraging message must be weighed against the claims of other individuals to receive an intervention that spares them from grave disadvantages. To deny them this would be to make them bear a disproportionately steep cost to protect the sensibilities of others.

On the basis of either a liberal or a strictly egalitarian theory of distributive justice, Norman Daniels and others argue that citizens of an affluent industrialized society that spends heavily on healthcare have a right to a broad package of efficacious healthcare services (Daniels; Buchanan et al.). If genetic intervention in living individuals becomes a reliable form of healthcare (once it is beyond the experimental stage), it will become the type of treatment to which such citizens have a right, according to these theories (Buchanan et al.), and failure to provide it will be not only a failure of compassion but an injustice.

There are significant risks in altering the somatic-cell genes of a single individual because the biological processes involved are so complex and the environment may interact with the changed genome in unexpected ways. However, for the most part it is only the individual who is at risk. There is further risk in changing a person's germ-cell DNA so that the change is transmitted to all that person's descendants. The new genome may give rise to new impairments when it is combined with the genes of others during reproduction or in response to shifting environmental influences. Because the technology for those procedures does not exist yet, one can say only that the ethical legitimacy of germ-line intervention to prevent disability will depend on the range of risks involved in each particular procedure. Great caution here is morally obligatory.

EQUAL HUMAN RIGHTS. Western philosophers argue that all human beings, in spite of their many obvious differences in strength, intelligence, and so forth, have equal fundamental human rights. Equal human rights always are thought to include noninterference rights such as the right to autonomy or self-determination and the right to freedom. They often are thought to include rights to goods or services as well, such as the right to a minimum amount to eat or a basic education. Philosophers offer different grounds for these moral rights.

For Immanuel Kant (1996 [1797]) human beings have such rights because they possess reason, including the capacity for rational choice in regard to action. Many recent authors follow Kant in proposing as the basis for the possession of equal rights criteria that depend on the psychological properties of the rights holder: the being's conceptual capacities, its control of its behavior, its emotions, or its capacities for reciprocal social interaction.

Social contract theories such as that of John Rawls (1971) offer a different basis for equal rights for all human beings. Jeffrie Murphy, following Rawls, says that "an individual should be understood as having a right to x if and only if a law guaranteeing x to the individual would be chosen by rational agents in the original position" (p. 8). The original position is a hypothetical situation in which a group of rational agents comes together to agree unanimously to principles and practices to govern their community. Each participant is self-interested, may care deeply about some (but not all) of the others, and knows in general what can happen in human lives but is "behind the veil of ignorance"—does not know his or her future or what his or her role in society will be. Those to whom the items in question are guaranteed need not be rational.

RIGHTS OF THE MENTALLY DISABLED. According to theories that base rights on psychological features of the prospective right holder, mentally competent people with physical disabilities have the same fundamental human rights as other competent adults because they fulfill all the criteria that have been propounded as the bases of human rights. Inability to walk or see does not deprive people of rationality, the capacity for informed choice, or the ability to interact reciprocally with others. According to contractarians, those people also have rights equal to those of the nondisabled because people in the original position know that they themselves might become physically disabled and thus would agree to protect the disabled in their possession of many goods.

In the psychologically based theories, however, a problem arises for people with severe cognitive or emotional disabilities. As Lois Weinberg (1981) points out, these people will not develop the capacities frequently cited as the grounds for equal human rights, such as the capacity for rational choice (in the severely retarded) and the capacity to interact reciprocally with others (in the sociopath). According to these philosophical theories, such individuals do not have any fundamental human rights; but that is implausible. At the very least those with mental or psychological disabilities have the basic human right not to be physically abused, and some argue that they have human rights to minimal care and an appropriate education. Giving them those things is not merely an act of compassion but also one of justice, it is argued, and hence a matter of rights.

The contractarian approach fares better. Murphy (1984) argues that rational agents behind the veil of ignorance would agree to guarantee a certain level of security and training for the mentally disabled because they know that they might become mentally disabled or might have a much-loved mentally disabled child. They would not guarantee autonomy protections to the mentally disabled but would guarantee them rights to basic food, shelter, and freedom from abuse.

AUTONOMY/NONINTERFERENCE RIGHTS AND RIGHTS TO AID. Noninterference or autonomy rights are the rights of rational persons who are capable of deciding their destinies to be left alone to do that: rights not to have others deprive them of life, liberty, or legitimately owned property (Locke, 1975 [1699]). Even for contractarians the full range of these rights belongs only to rational decision-making creatures because of their capacity to guide their behavior through their choices.

Mentally normal people with other types of disabilities are rational choosers, and so there are no grounds to deny that they have noninterference/autonomy rights. It is unjust to coerce them in the making of important life decisions, for example, to subject them to forcible sterilization. Mentally disabled people, depending on the severity of their impairments, may not live up to the standard of rational decision making needed to qualify for noninterference/autonomy rights. Some ethicists think that therefore people whose mental disabilities are significant do not have the moral right to make their own decisions about medical treatment, life-skills training, and finances. Those decisions are rightly made for them and should be made in ways that serve their interests. Others defend some autonomy rights for the mentally disabled.

Apart from noninterference rights, various authors claim that the disabled have the right to have a great assortment of goods and services provided to them by the rest of society. This may include life aids (ventilators and wheelchairs), attendant care, special education or training, the rebuilding of public structures, and income support (for food and shelter and also for healthcare in countries where healthcare is not subsidized for all). It is controversial which, if any, of these things are owed to disabled people by right and on what conceptual basis.

RIGHTS TO THE MEANS OF INCLUSION. For Anita Silvers (1994) all persons, or perhaps all who are mentally competent, have equal rights to participate fully in society on the basis of their individual dignity and self-respect. If any are excluded, justice requires that the barriers to their participation be dismantled or bridged. Thus, equality rights are the grounds on which the disabled have a right to be provided with the means of inclusion. Barriers to full participation are conceived broadly: The lack of a teacher for the visually impaired might qualify as a barrier to a visually disabled child's full participation in her or his school. Thus, the removal of barriers consists not only in the alteration of physical structures but also in the creation of new structures or devices and the provision of trained personnel. The disabled have a right to these things solely because of their right to equal participation, which in this view is a right that everyone has. This equality right to devices and services that remove barriers does not include the right to income support, however, because people do not all equally have that right solely on the basis of their equal dignity and self-respect. Silvers (1995) argues that once disabled people are granted equal access, they will earn their own living. If a few severely disabled people have a right to subsistence support, that has a different and nonuniversal basis.

However, a contractarian view treats the right to the removal of barriers and the right to income support as being on a par. In a contractarian view both are based on the protections rational agents would agree to for their society when choosing behind the veil of ignorance.

Thus, Gregory Kavka (1992) argues on the basis of both Hobbesian and Rawlsian social-contract theory that in advanced societies people with significant disabilities have a right against society that it provide, where feasible, the accommodation, equipment, and training needed to permit the disabled to engage in the productive processes of their society and thus earn an income. The Rawlsian version of the argument says that people in the original position would agree to improve the lot of society's least-advantaged members and that the disabled are among the least advantaged because of the disadvantage inherent in their disabilities and the barriers and prejudices they face in society. The most effective way to better their lot is to give them access to self-respect, which in modern societies depends greatly on work and career identification. Income support will not provide the same basis of self-respect, and so it is not the best means to achieve this end. Thus, although Kavka argues for the subsidized removal of barriers to employment, if the provision of food and shelter were the most effective way to better the condition of the least well off, that is what he would defend. Murphy's argument, similarly appealing to the original position, defends the provision of food and shelter to the mentally disabled.

Vigorous counterarguments are made against these arguments that society should provide the disabled with the means of inclusion. Philosophers who reject Rawls's theory of distributive justice attack the relevant premises. A different sort of counterargument claims that it is too expensive to provide all the goods and services needed by the disabled.

Although giving disabled people access to full social participation would enable many of them to earn a living and not depend on welfare payments, it is an economically inefficient solution, they say, because it would be cheaper to provide income support for all disabled people. Society could use the savings for other important purposes. This need not be a selfish argument; the savings could be used to provide free healthcare to the poor or to build better schools.

Various replies are offered to the efficiency objection. The basic structure of the argument is utilitarian, and it may be criticized on those grounds. The cheaper policy may increase the well-being of some elements in society, such as taxpayers and the nondisabled poor, but may yield a far lower level of well-being for the disabled than would inclusion, and no evidence is provided that the net well-being of all the persons affected will be higher with the less expensive policy. Alternatively, the argument may be rejected on grounds of justice: It may be less expensive to provide nothing but income support, but it is unjust to deny disabled people the bases of self-respect that come from inclusion in society.

Conclusion

This entry has investigated the concepts of disability, impairment, and handicap; defended partial definitions of those concepts; and related them to the concepts of disease and health. It has explained the two prevailing models for understanding disability: the medical model and the minority group model. Those conceptual analyses provided tools for surveying two groups of ethical issues pertaining to disability: issues regarding the value of the lives of the disabled and issues regarding the moral rights of disabled people. In the first category the entry examined permitting the disabled to choose death, abortion of impaired fetuses, and genetic intervention to prevent disabilities. In the second category the entry considered issues of whether the disabled have a right to various kinds of liberties and government assistance, and if so, on what grounds.

rachel cohon

SEE ALSO: Adoption; Anthropology and Bioethics; Autonomy; Care; Christianity, Bioethics in; Chronic Illness and Chronic Care; Dementia; Eugenetics; Genetic Testing and Screening: Reproductive Genetic Testing; Human Dignity; Human Rights; Infanticide; Infants, Ethical Issues with; Judaism, Bioethics in; Life, Quality of; Long-Term Care; Mental Illness; Metaphor and Analogy; Moral Status; Pediatrics, Intensive Care in; Rehabilitation Medicine; Value and Valuation;Virtue and Character; and other Disability subentries

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