Toward a Politics of Disability: Definitions, Disciplines, and Policies
by Harlan Hahn, University of Southern California (1985)
Contents
- Abstract
- The Definition of Disability
- The Medical Definition
The Economic Definition
The Socio-Political Definition
- Toward a Politics of Disability: Traditions and Prospects
- Summary and Conclusion
- Notes
The study of disability is experiencing significant changes which have affected all of the social sciences, but relatively little attention has been devoted to this subject by political scientists. Many of these changes can be traced to a definitional shift from a medical orientation, which focuses on functional impairments, and an economic approach, which stresses vocational limitations, to a socio-political perspective which regards disability as the product of the interaction between the individual and the environment. The latter view has led to a new emphasis on anti-discrimination measures and to a "minority-group" model of disability, which recognizes that the environment is molded by public policy and that policy is a reflection of prevalent social attitudes and values. Although the concept that disabled citizens comprise a minority group has long been recognized in psychology, economics, and sociology, the development of this model has previously been impeded by the lack of a strong emphasis on the political dimensions of the issue. Increasing acceptance of the socio-political definition of disability, however, may provide a means of restructuring and reconceptualizing the study of this subject.
Among the wide range of political issues that have become the objects of significant scholarly interest, relatively little attention has been devoted to the study of disability policy. Increasingly, the subject of physical disability has emerged as a major focus of research in psychology (1). sociology (2). and economics (3). as well as in several recent anthologies which combine the perspectives of various disciplines. (4). Yet, disability policy has been virtually ignored by political scientists.
Much of the apparent indifference to this issue undoubtedly has reflected conceptual confusion. Political scientists not only have failed to devote significant attention to disability, but perhaps even more importantly, they have also avoided the crucial responsibility of examining the normative implications of research in other disciplines that yield different policy prescriptions. Perhaps the most commonly accepted definition of disability, for example, is Nagi's concept of "a form of inability or limitation in performing roles and tasks expected of an individual within a social environment." (5). Yet, various academic traditions have placed distinctive emphasis on terms such as the individual or the environment, the "inability or limitation," the nature of "roles and tasks," and the notion of "expectations." Moreover, each word embodies specific values, and each term also connotes different programmatic solutions to the problem. As a result, the clarification of normative issues seems to be an essential prerequisite to the development of a politics of disability.
The purpose of this study, therefore, is to examine the values contained in three major definitions of disability, to awn the policy implications of each of these definitions, and to appraise the extent to which research in various disciplines of the social sciences has facilitated or impeded the development of a new conceptualization of the issue. In this process, an effort is made to reevaluate some of the perspectives that have previously inhibited research on disability policy and to introduce an orientation that might attract growing interest in this field.
Perhaps the major obstacle to the analysis of disability policy is the lack of a general consensus about the nature or meaning of disability. In fact, at least three distinct definitions have been used in the formulation of government plans and programs for disabled persons. Each of these approaches seems to contain different implications concerning both the most appropriate solution to the problems of physical disability and the most effective means of allocating resources to achieve this objective.
The Medical Definition
Public knowledge of physical disability, to the extent that it exists, probably reflects a strictly medical definition which emphasizes limitations on physical functioning. Just as most early policies were based upon the causes or the circumstances in which a person acquired a disability, this approach denotes the influence of a medical etiology which stresses the causal relationship between the origins and the outcomes of various types of disabilities, even though there often is not a close correspondence between the two phenomena. From a medical perspective, disabilities are treated as separate diagnostic categories rather than concentrating on the common problems of disabled people. In the development of policy to cope with the results of disability, the diagnosis of the origins of a person's physical condition may have only limited social, psychological, economic, or political value. Except in the design of measures to prevent disabilities, effects matter much more than causes. Nonetheless, in most disability and rehabilitation programs, a medical determination usually is an essential prerequisite for participation. The difficulty, of course, is that this focus on the sources of a disability may promote some tenuous-and potentially damaging- inferences about its consequences. Hence, the influence of a medical definition may be primarily responsible for the highly questionable assumption that there is a close relationship between a person's physical capabilities and his or her capacity to engage in work and other significant activities in life.
In many respects, medicine may be particularly ill-equipped to deal with the problems of disability. Medical intervention has been a more successful mode for handling acute rather than chronic conditions; and many physicians have expressed an understandable interest in caring for physical disorders which are susceptible to prompt amelioration in preference to those which are permanent and incurable. The medical model also encompasses a concept of the "sick role" which requires patients to surrender their autonomy to professional direction and devote all of their efforts to the ultimate objective of complete recovery. (6). Since this goal is obviously impossible for many disabled persons, the domination of the treatment of disability by the medical profession can be seriously questioned. Ironically, through the improved capacity to sustain or prolong the lives of many persons who might not have survived in earlier eras, medicine may be responsible for creating more disabilities than it cures. Although the policy implications of this orientation would seem to suggest the need for increased expenditures for health care and research, the latter task has been generally viewed as the primary responsibility of private philanthropic activities (such as the "telethons," which many disabled viewers find offensive) and few significant proposals have been made to provide a comprehensive public health program for persons with disabilities. In fact, aside from creating the opportunity to seek care at their own expense, the medical approach to the problems of disabled persons seems to be virtually devoid of direct policy implications.
Much of the difficulty with an exclusively medical definition of disability can be traced to its preoccupation with the "inabilities or limitations" of the individual. Almost no consideration is given to the possibilities of modifying the environment, changing "roles and tasks," or alternating the expectation that all men and women are required to possess a full range of physical, mental, and emotional capacities to qualify for membership in the human community. The medical perspective seems to imply a demand that disabled persons must adapt and adjust to their surroundings without imposing a corresponding obligation on policy-makers to create an environment which can accommodate the needs and desires of citizens with disabilities. This exclusive emphasis on individual functioning also is reflected in the questions of the periodic Health Interview Survey of the National Center for Health Statistics of the National Institutes of Health, which define disability operationally as the inability to perform several routine activities of everyday life. Unfortunately, these data are of limited value in formulating public policies that address major problems confronting disabled persons.
The prevalence of a medical approach to disability may be one aspect of what Illich (7). has termed "the medicalization of life." A medical definition not only imposes a presumption of biological or physiological inferiority upon disabled persons, but it also inhibits a recognition of the social and structural sources of disability. From this perspective, the problems of disability arise from physical flaws within a person rather than from defects in an unadaptive environment or society, and solutions to these difficulties must be sought primarily through individual rather than collective efforts. In fact, by encouraging the formation of organizations around specific diagnostic categories, the medical orientation has impeded the growth of a unified social and political movement of disabled citizens. Under the aegis of the medical profession, important issues about the designation and the alleviation of disabilities are "depoliticized." However, as Gliedman and Roth have pointed out, further research and technological advances ultimately may demonstrate that medical assumptions about the functional limitations imposed by disability could be little more than a "cultural invention." (8).
The Economic Definition
Another concept of disability, which has been widely adopted by govern-ment officials, focuses on the economic problem of employment. Instead of placing sole emphasis on physical functioning, the approach suggests that a disability can be described as a "health-related inability" or limitation on the amount or kind of work that can be performed. (9). This definition has been utilized in numerous surveys conducted by the Social Security Administration. By focus-ing on the functional capabilities allegedly necessary for the performance of a job, this perspective seems to represent a unidimensional approach to the problem of disability that might have been appropriate in an economy based on manual labor rather than on the delivery of services or on high technology. In order to understand the widespread acceptance of the tendency to draw infer-ences about employability from medical determinations of disability, however, it is necessary to review the historical context in which this definition emerged.
Although the principal initial beneficiaries of disability policy were veterans and industrially injured workers who became disabled by serving the interests of the state in military defense and economic growth, respectively, perhaps the major political response to this issue has been reflected by rehabilitation policies which are primarily designed to return disabled persons to productive employment. The United States passed a Rehabilitation Act in 1920, influ-enced by the Smith-Hughes Act of 1917 for vocational education and by the Soldier Rehabilitation Act of 1918, which seemed to be viewed principally as a means of promoting economic expansion and prosperity. (10). Many persons with serious disabilities were judged infeasible for employment or training, and the federal coordinating office of the program admitted bluntly that "the justification of vocational rehabilitation is based on its economic return." (11).
For many years, rehabilitation policies appeared to be highly successful. Early studies indicated that, for every dollar spent in these efforts, nine or more dollars were returned to the federal treasury through taxes on the incomes of rehabilitated workers. (12). Yet, as Bowe has also pointed out, America continued to spend "ten dollars on dependence among disabled people for every dollar it expends upon programs helping them to become independent."1s Perhaps part of the problem was related not only to the rather narrow emphasis on preparing disabled persons for economic productivity almost at the expense of other social or political aspirations, but also to the manner in which "success ratios" were assessed. Traditionally, the placement of a rehabilitation client was defined by a so-called "case-22 closure," in which employment is secured for only a short period of time. Since the number of eligible applicants has almost always exceeded the number of persons admitted to rehabilitation programs, counselors have been vulnerable to the charge of "creaming," or of inflating their success rates by selecting cooperative or slightly disabled clients who can be readily rehabilitated. Many rehabilitation counselors fear that the Rehabilitation Act of 1973, which requires them to assign the highest priority to severely disabled persons, could result in declining placement ratios which might, in turn, jeopardize the chances of continued government funding.
Despite these deficiencies, the economic approach to disability was adopted in other government programs. The Social Security Act of 1935 did not contain any provision for disability insurance because it was thought to be "the most difficult of all forms of social insurance." (14). The dilemma appeared to be resolved by a definition that established an equivalence between disability and unemployability. After the completion of a Senate report in 1948 that equated disability with an inability "to perform any substantial gainful activity." Congress finally adopted a measure granting Aid to the Permanently Disabled in 1950. (15). This program was combined with Aid to the Blind and Old Age Assistance to become a Supplemental Security Income (SSI) plan which was passed with only one dissenting vote in Congress in 1972 to grant disabled persons who do not have adequate alternative sources of support a uniform guarantee income from the federal government. (16). Since SSI is based upon an income or "means" test, it can be characterized as an income support program. By contrast the Social Security Disability Insurance (SSDI) policy established by a 1956 law could be viewed as an income maintenance program for disabled worker who are considered unemployable but who qualify for payments on the basis of their prior employment records and contributions to this trust fund. (17). Both programs, however, appear to reflect a debatable - but frequently unexamined - assumption that disabled persons are precluded by their impairments from earning an adequate livelihood.
Disability policies are plagued by the problem of "disincentives" which encourage many recipients of income support or maintenance payments not to abandon their benefits by seeking rehabilitation and regular employment. For example, many disabled persons, with physical conditions which may make them especially susceptible to catastrophic medical costs, prefer to continue to accept relatively meager SSI or SSDI support rather than to risk the loss of government health care protection provided by those programs. In addition disabled persons often are trained by rehabilitation programs for positions in the secondary labor market which provide few opportunities for increase income or upward mobility. (19).
Perhaps the basic problem, however, is the assumption, embedded in almost all rehabilitation and disability policies, that the ability to work is determined principally by a person's functional capacities. In spite of research which indicates that the employment of disabled persons is influenced largely by loci: and economic trends, (20). most rehabilitation programs are designed primarily to effect a modification of the disabled individual rather than an alteration of the environment - or the worksite - in which (s)he may be located. This orientation fails to take adequate account of other talents possessed by disable persons and of technological changes such as computer terminals or labor-saving devices which further reduce the need for physical capabilities and which coup make employment possible even for the severely disabled home-bound or institutionalized individual. As Roth has pointed out:
A handicap is expressive of a contingent relationship between a different body and given society. That relationship can be altered by changing the body or by adjusting to the conditions of the society. On the other hand, the relationship can be changed by altering society. The same holds true for work as a central part of society: One can change the person or change the work. But usually the handicapped person cannot be substantially changed .... The other way would be to change the organization of production, a theoretical possibility even if it is thought in practice to be too expensive; indeed, it may be the least expensive alternative in the long run. (21).
Perhaps more than financial interests are at stake there. Although many critical social and economic roles are designed for a tiny fraction of the population at the prime of their lives who have not suffered any loss or decline in their faculties, the prospect of making institutional or environmental modifications to accommodate the needs and aspirations of persons who represent a marked deviation from common physical characteristics may involve a threat to values which are even more fundamental than economic motives.
The economic definition of disability focuses on the "roles and tasks" associated with work to the exclusion of other social rights and responsibilities. Moreover, the disabled individual is "expected" to fulfill existing requirements for employment, and little consideration is given to the possibility of altering job expectations to accommodate the needs and skills of disabled employees. Although this orientation has been expanded to include some recognition of the extent to which the economic climate as well as personal characteristics contribute to persistent joblessness among citizens with disabilities, it continues to emphasize "inabilities or limitations" rather than capabilities or assets. By indicating that the employment of disabled persons may stem from faults in the economy as well as from the physical or vocational deficiencies of a worker, studies by economists utilizing this definition have taken an important step toward establishing the linkage between individual and environment components of disability; but functional limitations and a lack of adequate work skills are still perceived as the primary source of the barriers that prevent most disabled people from engaging in many types of jobs. Along with physicians, professional control over most disability and rehabilitation programs is maintained by vocational counselors who have often been trained in a clinical tradition that incorporates prevailing assumptions about disability and employability. (22).
These practices can produce surprising contradictions. In some situations, disabled persons who successfully obtain employment after rehabilitation or on their own initiative may be classified as nondisabled and, in other circumstances, unemployed nondisabled workers might be considered disabled because there is no longer a demand for their skills. While the implications of an economic definition of disability seem to form the foundations of rehabilitation as well as income maintenance and support programs, they fail to address the employment problems created by unnecessary job requirements and bias or discrimination. During World War II, for example, unemployment rates for disabled persons declined when physical examinations and other functional prerequisites for hiring were waived, but they were reimposed after the war to facilitate the recruitment of nondisabled veterans. The economic orientation, therefore, embodies inconsistencies and pitfalls that prevent it from offering a comprehensive solution to the problems of disabled Americans.
Policies based solely on an economic understanding of disability also appear to contain features which may be detrimental to disabled citizens. Many rehabilitation programs seem to place an exaggerated importance on manual labor. Not only is this emphasis incompatible with the standards of contemporary economies, but it has also appeared to prevent many disabled persons from upgrading their skills for service, managerial, or professional positions. Economic analyses also are dominated by the competitive norms of a supposedly free market. In part, this perspective may account for the large proportion of disabled persons who are consigned to income maintenance or support rather than rehabilitation programs, and it has diverted attention from the study of employer attitudes and their capacity to evaluate the qualifications of disabled job applicants as a potentially significant barrier to employment. Many critics contend that the economic approach has transformed disabled people into an economically managed but politically vulnerable segment of the population.
The Socio-Political Definition
Increasingly, both medical and economic concepts are being challenged by a new socio-political definition of disability. (24). Fundamentally, this model implies that disability stems from the failure of a structured social environment to adjust to the needs and aspirations of disabled citizens rather than from the inability of a disabled individual to adapt to the demands of society. In viewing disability as a product of a dynamic interaction between humans and their surroundings, emphasis is shifted from the individual to the broader social, cultural, economic, and political environment. In fact, from this perspective, disability may even be regarded primarily as the consequence of a "disabling environment." (25). Hence, the "roles and tasks" encompassed by this definition are not restricted to economic or even functional activities. Nor is stress placed on "inabilities or limitations" at the expense of the capabilities that disabled persons continue to exercise. Perhaps most importantly, the socio-political approach comprises a basis for the development of a new set of social values to replace the conventional "expectations" that have shaped the assessment of men and women for centuries. The devaluation of disabled persons has not resulted from a lack of economic productivity or from their alleged biological inferiority. On the contrary, this inequality has resulted from the reluctance of society to recognize their dignity and worth as human beings or to grant them civil rights as members of a political community. As a result, the sociopolitical definition has provided a new foundation for the emergence of a "minority-group model" to rival the "functional-limitations paradigm" that has traditionally guided the study of disability and rehabilitation. (26).
The socio-political perspective represents a major change in the direction of research on disability. Rather than concentrating on the economic or functional implications of disability, attention is focused on the attitudinal and behavioral significance of perceptions which are formed on the basis of visible and permanent characteristics. (27). Accordingly, disabilities are regarded as no different than other bodily attributes such as skin color, gender, or aging which have been used as a means of differentiation and discrimination throughout history. While disabilities may encompass traits which are perceptible only to close associates or to the trained eye as well as features which represent a major departure from conventional human images, there is little reason to believe that they have not been an important source of inequality in a world in which humans have learned to classify and to categorize other persons primarily on the basis of their physical appearance. In fact, tote extensive record of stereotyping, stigmatizing, segregation, prejudice, and discrimination to which disabled people have been subjected provides abundant evidence to the contrary. Unlike prior definitions which are based primarily on professional assessments, this new understanding reflects what might be termed the social meaning of disability which is derived from the concrete experiences of disabled persons.
The increased emphasis on legal rights has led to a growing recognition that physically disabled people comprise a minority group with many of the same problems as other disadvantaged ethnic or racial segments of the populations. (28). Disabled persons not only form a sizeable proportion of welfare recipients, (29). but they also have one of the highest unemployment rates in the United States. (30). Disabled citizens have confronted barriers in architecture, transportation, and public accommodations which have excluded them from common social, economic, and political activities even more effectively than the segregationist policies of racist governments. Most disabled children in America have been assigned to "special" or separate schools, and many have not received any education whatsoever. (31). Disabled individuals have been subjected not only to stereotyping, but also to stigmatizing, which has made them the targets of aversion and ostracism. (32). Studies of public attitudes have revealed extensive intolerance of disabled persons which is related to indicators of discrimination against other minority groups. (33). Like the plight of other minorities, the problems of disabled persons can be viewed as raising the fundamental issue of the extent to which a society is willing to take compensatory action for the discrimination and inequality imposed upon portions of the population that have become the objects of widespread prejudice.
Moreover, elements of the socio-political perspective have been reflected in major legislative changes. In the 1970's many persons began to perceive the principal obstacles confronting disabled persons as the products of discrimination instead of medical or vocational limitations, and major emphasis was placed on the effort to gain equal rights rather than on the development of functional and economic skills. In addition to numerous bills to expand the rights of disabled citizens in social services, transportation, and other areas of public policy, Congress passed the historic Rehabilitation Act of 1973. This law created the Architectural and Transportation Barriers Compliance Board to supervise the removal of artificial barriers that have prevented disabled individuals from participation in many areas of life, and affirmative action requirements for the hiring of disabled workers were extended to the more than 2 million companies which have more than USD 2,500 in grants or contracts with the federal government. Perhaps the most significant provision in this legislation, however, was Section 504 which stated simply:
"No otherwise qualified handicapped individual in the United States . . . shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance."
In addition to P.L. 94 - 142, the Education of All Handicapped Children Act of 1975, which sought to create equal educational opportunities for disabled students, this legislation was widely hailed as a crucial extension of the rights of disabled Americans.
But these laws have not been effectively implemented. Resources to fulfill the objectives of P.L. 94 - 142 were not appropriated by Congress, and the number of disabled students who are still unserved by educational institutions has not yet been determined. The initial rules concerning the administration of Section 504 were not issued until 1977 when massive demonstrations by disabled activists finally forced the Secretary of Health, Education, and Welfare to sign these regulations. (34). Subsequent interpretations of this section have impeded the effort to prohibit discrimination against disabled persons, and there has been relatively little compliance with the affirmative action requirements of the Rehabilitation Act of 1973. As a result, attempts to guarantee the civil rights of disabled Americans have remained an unfulfilled promise.
Much of this difficulty probably can be attributed to the absence of extensive studies based on a socio-political understanding of disability. Unlike the medical and economic definitions, the theoretical framework which considers disabled persons a minority group in American society has not been supported by a major legacy of research on this subject. Virtually no surveys of the problems confronting disabled people, for example, have utilized the operational measures of permanence and visibility implied by the socio-political definition.
Perhaps even more importantly, this new orientation contains at least two assumptions that seem crucial to the implementation of anti-discrimination measures. Initially, this approach is founded on a realization that all aspects of the environment - including architecture, communications, and other settings that provide a context for human interactions - are fundamentally molded by public policy. (35). While these policies represent a complex mixture of decisions and nondecisions, governmental authorities bear an inescapable responsibility for those aspects of the environment that have a prejudicial impact on citizens I with disabilities. From this vantage point, the solution to the problems posed by disability must be achieved by policy changes that affect the environment rather than by an exclusive reliance on alterations of the functional or economic capabilities of disabled individuals. Secondly, the socio-political perspective recognizes that policies shaping the environment are a reflection of prevalent social attitudes and values. In fact, the origins of the treatment of disabled Americans eventually can be traced to the so-called attitudinal environment of society which has revealed aversive and antagonistic feelings about people with disabilities. Features of the social environment that impose inequality on disabled citizens cannot be viewed merely as accidental or coincidental. In the United States, governments not only have a responsibility for policies that foster a disabling environment, but they also have a duty to protect the civil rights of persons with disabilities by ending this type of discrimination. Obviously the task of disentangling attitudinal discrimination and functional limitations is a complex endeavor. (31). And yet the difficulty of the undertaking need not obscure the fact that this is a researchable problem which has not been addressed previously. In assessing the future direction of policy studies based on a socio-political definition, therefore, it may also be appropriate to review the legacies that researchers have inherited from prior investigations of disability.
Toward a Politics of Disability: Traditions and Prospects
Among the social sciences, psychology probably accounts for a larger proportion of the research conducted on disability than any other discipline. Perhaps at least part of this concentration can be explained by the affinities which this field shares with medicine both in its concern about seemingly pathological conditions that interfere with functional capacities and in its emphasis on individuals rather than groups. And yet, even in psychology, the recognition that people with disabilities comprise a minority group has a long and respected tradition. In an early study of somatopsychology, or the influence of bodily characteristics on personality traits, for example, Barker, Wright, Meyerson, and Golnick introduced an analysis of the adjustment of two physically disabled persons by stating:
We shall begin with the very general assumption that in American culture physically disabled persons, like Negroes [sic:] and children, for example, have the position of an underprivileged minority. The data on attitudes and on employment ...can leave no doubt that behavioral incapacities and social rejection place these people in a subordinate position where many goals are inaccessible. However, it is obvious that the separation is far from complete. The disabled are not a caste; a more or less extensive range of activities is open to both the physically normal and the physically defective on equal terms, and it is possible for an individual to pass from one group to the other under some circumstances. (38).
Despite this orientation, the consequences of minority-group status were never fully explored in subsequent psychological research. A part of the explanation might be attributed to the fact that all of these writers -and other prominent disability researchers such as Ralph K. White and Tamara Dembo -appeared to share a strong interest in "field theory" as students of Kurt Lewin. (39). This approach sought to examine cognitively unstructured situations to assess the psychological circumstances of disabled persons, racial or ethnic minorities, and other groups such as adolescents and the "new rich." (40). As a result, neither the misconceptions about minority groups and "castes," nor the inaccurate assumptions about the "range of activities" available to disabled and nondisabled persons on equal terms," nor the alleged ease of "passing" seem to account for the failure of psychological research to pursue the implications of a minority group model. In fact, the critical missing element appeared to be the lack of a realization of the extent to which political actions or inaction contributed to the disadvantaged position of people with disabilities.
Seven years after the publication of the original study of somatopsychology , one of the authors of that report assessed the minority-group issue in the following words:
Although it is important to understand that a person with a disability often shares problems in common with members of other minority groups, there are some marked differences. One of the most significant is that he rarely has the kind of group sanction and personal valuation that endorses behavior reflecting the disability. Rather, the typical advice is to appear as much like a nondisabled person as possible, and his adjustment is often measured in terms of his skill as an actor. (41).
Wright's reservations about the appropriateness of the minority-group concept for disabled people appeared to be based not on theoretical considerations but on the relative absence of social support for such identification. This obstacle clearly could be remedied. As increasing numbers of disabled persons began to join a social and political movement to gain their civil rights during the nine- teen-seventies, for example, the attitudes of many psychologists began to change. Vash, for example, though she does not discuss the concept of a minority group directly, devotes a chapter of her book to "the psychological benefits of belonging to a group with a solid, political power base.". (42). Similarly, Stubbins (43). has urged psychologists to devote increased attention to disability policy and Gill.. has explored the advantages of minority-group concepts in counseling. Although research based on the minority-group model never produced an extensive literature in psychology, the validity of the approach appears to be justified by several significant precedents that might eventually spawn a growing interest in this theoretical perspective.
In contrast, while policy has been a major focus of economic research on disability, there has been relatively little mention of the concept of a minority group in these investigations. Only a few studies have been conducted by economists on wage and hiring discrimination against disabled workers. (43). Moreover , when civil rights issues are acknowledged in economic analyses of disability, they are often confused with cost-benefit formulas. In an investigation that described "equal access" as a "radical" approach to the employment of disabled persons, for example, Burkhauser and Haveman concluded:
The introduction of. ..cost considerations into decisions relating to the enforcement of equal access regulations is quite contrary to the intent of the advocates of this policy approach. To them, equal access is a fundamental principle, and its achievement is to be secured as a matter of right, irrespective of cost. An alternative point of view, however, is that the "equal access" goal differs little from other important objectives in the disability area, such as efficiently sharing the cost of impairments or undertaking efficient investments to reduce the cost of disability. ...And in our view it is this perspective that should guide my ultimate evaluation of the equal-access strategy. If one accepts the principle that less inequality in access is desirable, even if full equality in access is not feasible the issuer becomes little different from those confronted earlier. How much should inequality in access be reduced, and toward what dimensions of inequality should major efforts be directed? With this framework, benefit and cost comparisons must be made and difficult choices confronted. (46).
By inserting the unsubstantiated assumption that "full equality. ..is not feasible," these analysts seek to transform a question of rights into a problem of economic calculation. Missing from this equation is a recognition that the existing environment produces undue advantages for the nondisabled as well as disadvantages for disabled citizens, an acknowledgement of the fact that policy decisions reflect social values as well as monetary variables, and a realization that political choices must be guided by considerations of democratic principles and constitutional standards of freedom and equity rather than by strict financial pragmatism. These shortcomings seem to be illustrative of general weaknesses in research on disability performed by economists. Whereas there appears to be numerous opportunities for economic analyses of the problems confronting disabled persons as a minority group in American society, the foundations for such investigations have not been firmly established in this discipline.
Although the fields of sociology and social psychology probably have indicated the greater acceptance of the minority-group perspective in the study of disability, research in these areas has been complicated by a tendency to develop analogies from the examination of social deviance rather than from the analysis of racial or ethnic minorities. Safilios-Rothchild, for example, concluded:
We think that the concept of a minority group can be applied in the case of the disabled despite minor differences. And as in the case of other minority groups, the position of the disabled in the larger society and the dynamics of their interaction with other disabled, as well as with the nondisabled, can be best analyzed and explained by means of the general theory of deviance. (47).
And though most sociologists have acknowledged that the ascription of deviance usually results from the labelling of disabled persons by others including public officials, much of this research has tended to develop in a relatively apolitical direction. Even Goffman, in his classic analysis of Stigma, expressed a rather pessimistic view of the possibilities for political remedies to the problem:
The problems associated with militancy are well known. When the ultimate political objective is to remove stigma from the differentness, the individual may find that his very efforts can politicize his own life, rendering it even more different from the normal life initially denied him-even though the next generation of his fellows may greatly profit from his efforts by being more accepted. Further, in drawing attention to the situation of his own kind he is in some respects consolidating a public image of his differentness as a real thing and of his fellow-stigmatized as constituting a real group. On the other hand, if he seeks some kind of separateness, not assimilation, he may find that he is necessarily presenting his militant efforts in the language and style of his enemies .... His disdain for a society that rejects him can be understood only in terms of that society's conception of pride, dignity, and independence. In short unless there is some alien culture on which to fall back, the more he separates himself structurally from the normals, the more like them he may become culturally. (48).
Rather than attempting to assess the conditions that might promote a sense of dignity and pride or a supportive subculture or even eventual acceptance by the nondisabled majority, therefore, many sociological studies of disability as deviance have tended to focus on the efforts of disabled persons to cope with their marginal status in society. Little attention is devoted to the discrimination created by policies that result in a disabling environment. In other words, the primary emphasis of previous research has been on how disabled individuals related to other (especially nondisabled) people rather than on what the society and the government does to them.
Increasingly, the application of theories of deviance to the circumstances of persons with disabilities has stressed the concept of "negotiated outcomes" rather than the passive acceptance of the labels applied to them by others. (49). While this principle does not appear to contain highly politicized connotations for the study of individual behavior, its use in the analysis of social movements may have far-ranging widespread political ramifications. As Anspach has pointed out:
But the assumption of deviant passivity creeps into the work of almost all labelling theorists, reliant as they are on the notion of "victimization" and an ideological commitment to the "underdog." Labelling theory, then, is conceptually ill-equipped to deal with the identity politics of the "mentally ill" and the physically disabled. Demonstrations and social protest provide these politicized deviants with a forum where identity is negotiated on a grand scale with the American public. (50).
As a growing proportion of disabled people began to organize politically on the basis of their identification with disability, there may be many opportunities for fruitful research using the concept of "negotiated outcomes" in the context of theories of deviance. Yet this orientation must not divert attention from the constraints imposed on disabled Americans by discriminatory policies', adopted or endorsed by the nondisabled majority. Citizens with disabilities have not merely been the acquiescent recipients of unfair labelling nor have they always been successful in establishing a dialogue about their treatment with dominant individuals or groups. Often they have simply been the victims of political decisions or nondecisions that prevent them from gaining their civil rights. As a result, the study of disability seems to require a theoretical perspective that contains an explicitly political awareness not only of the strivings of disabled people but also of the prejudicial impact of public policies.
The aspirations of persons with disabilities appear, in many respects, to exceed the goals of many prior social and political movements. Anspach has also noted:
But the political activism of the handicapped . . . seems to represent a style of politics not entirely captured by the labels "instrumental," "expressive," or 'symbolic.' This fourth political modality, while equally symbolic, primarily concerns not status, life style, or morality, but rather identity or being. While such social movements may have strong instrumental components, insofar as they seek to effect changes in public policy, they: consciously endeavor to alter both the self-concepts and societal conceptions of their participants. Political goals and strategies often become a vehicle for the symbolic manipulation of person and the public presentation of self. (51).
The aims of disabled citizens, therefore, obviously leave extensive room for contributions from psychology, sociology, and other social science disciplines, to studies based on a socio-political definition of disability. Unlike minorities; in which membership is determined genetically, for example, disabled persons usually lack a sense of generational continuity that might otherwise facilitate the development of a subculture as a crucial source of refuge against the prejudicial assaults of a predominantly nondisabled world. In fact, the delineation of positive values derived from the disability experience may be essential to overcome the understandable reluctance of many disabled individuals to mobilize politically around that aspect of their identity - the disability - which is most negatively stigmatized by the remainder of society. And yet the intrinsically political dimensions of this type of research must not be neglected. Politics not only provides a vehicle for the attainment of important objectives such as the eradication of discrimination, but it also seems to comprise an indispensable process for transforming individual and societal images of the self. By gaining a consciousness that their problems stem more from a disabling environment than from their functional limitations, disabled Americans involved in the struggle to alter the policies that mold their surroundings eventually may acquire the strength and the resilience to sustain a powerful and continuing movement.
Research by social scientists obviously can provide a crucial source of support for these efforts. Perhaps one of the most pressing needs is a rigorous examination of the proposition implied by "the disability continuum," which poses a direct relationship correlation between the visibility of permanent disabilities and the amount of discrimination that they elicit. (52). If this hypothesis were to be confirmed, for example, the findings would seem to provide substantiation for the contention that discriminatory features of the present environment were created by policies that reflect attitudinal bias and prejudice rather than mere indifference or neglect concerning the needs of citizens with disabilities. Efforts to explore this question longitudinally also might yield important evidence about the extent to which the segregation and inequality imposed by the existing environment reflects a deep or even subconscious aversion to disabled people rather than mere coincidence. Although the investigation of these issues is complicated by the absence of survey data based on a socio-political definition of disability, they exemplify the kind of information that may be needed to demonstrate that disabled Americans deserve the same constitutional protection granted other minority groups.
From a socio-political perspective, many of the difficulties confronting citizens with disabilities probably can be attributed to a pervasive tendency of researchers to ask the wrong questions. The danger of this practice is illustrated by a rhetorical issue posed by a Supreme Court justice in a case involving the deinstitutionalization of persons with mental health problems, when he wondered:
May the state fence in the harmless mentally ill solely to save its citizens from exposure to those whose ways are different? One might as well ask if the State, to avoid public unease, could incarcerate all who are physically unattractive or socially eccentric. Mere public intolerance or animosity cannot constitutionally justify the deprivation of a person's physical liberty. (53).
The application of these considerations to the environment encountered by people with other types of disabilities, which prevents them from enjoying freedom of movement and other constitutionally protected rights, raises some disturbing problems. Is such treatment based solely on their health status, or is it molded by a fundamental aversion to physical or behavioral characteristics which others find unappealing or strange? Unfortunately, available research cannot provide definitive evidence about this issue. And yet, despite the protests of those who might claim that the environment is not designed to permit avoidance of others perceived as alien or different, the matter seems crucial. Until social scientists produce convincing proof that these variables are irrelevant to the circumstances of disabled people, the argument that the environmental constraints faced by citizens with disabilities represent an unconstitutional denial of equal rights cannot be discounted or dismissed.
The definitional confusion surrounding research on disability has produced some anomalous results. In a historical study of policy issues, for example, Edward Berkowitz delineated the definitions of disability as a process of indemnification for injury, a relationship between ill health and unemployment, and a final category of "policy that relates to the handicapped. (54). Such an approach ignores the extent to which persons in the former two groups partake of the same characteristics as those in the third classification, and it neglects the common experiences of disabled persons in coping with a disabling environment. Despite the recognition granted the concept of a minority group in prior investigations of disability, this perspective has been employed as a central theoretical orientation primarily in a classic study of disabled children (55). and in some journalistic reports on this segment of the population. (56). Obviously there is a great deal of work that remains to be done on the problems facing disabled people as a minority group in American society. Hopefully, the socio-political definition of disability can provide a firm foundation for these future investigations.
This study has examined the normative and policy implications of three major definitions of disability, and it has assessed the contributions of research in various social-science disciplines to the development of a new understanding of this issue. Each of these perspectives - medical, economic, and sociopolitical - appears to embody different values; and each seems to place distinctive emphasis on the major terms in a widely accepted definition of disability. Whereas the medical approach tends to stress a functional "inability or limitation" almost at the expense of other characteristics, for example, the economic orientation imposes a similarly unidimensional accent on the "roles and tasks" associated with employment. By contrast, the socio-political understanding seems to be the primary perspective which provides a foundation for altering "expectations" so that disabled citizens are permitted to seek adaptations to their needs and aspirations rather than simply adjusting themselves to the demands of a predominantly nondisabled society. Perhaps most fundamentally, the three definitions apply different emphasis to the individual and the social environment. While the medical definition concentrates almost exclusively on the individual and the economic approach retains this focus with a partial acknowledgement of the influence of the general economy on employment opportunities, the socio-political perspective devotes principal attention to the consequences of a disabling environment.
The policy implications of the three definitions also reflect wide variations. Aside from a concern about research and health care, which is generally assumed to be a private rather than a public responsibility, the medical approach does not appear to contain significant connotations for extensive government programs to alleviate the problems confronting persons with disabilities. On the other hand, the economic definition has been used as a primary basis for expanded rehabilitation as well as income support and maintenance plans. In addition, the socio-political orientation has been reflected in the passage of anti-discrimination measures such as P.L. 94-142 and Section 504 of the Rehabilitation Act of 1973. Yet, although there have been numerous government surveys utilizing operational measures of the medical and economic definitions of disability, no comparable surveys based on the socio-political perspective have been conducted.
The socio-political understanding of disability seems to be based on a recognition that all aspects of the environment are fundamentally shaped by public policy, a realization that policies affecting the environment reflect attitudes and social values, an awareness that the so-called attitudinal environment of society contains many aversive or prejudicial perceptions of persons with disabilities, and a consciousness that discriminatory features of the existing environment may not be viewed simply as accidental or coincidental. Hence, this perspective has aroused increasing interest in a "minority-group model" of disability that is challenging the traditional "functional-limitations paradigm." Yet the legacies promoted by medical and economic definitions have prevented a thorough examination of the major propositions of the new approach to the study of disability.
Perhaps much of the neglect of the minority-group perspective in prior research on disability can be traced to the relative absence of an explicitly political dimension in these investigations. While the concept of disabled persons as a minority group has been widely recognized for many years in psychology, for instance, this focus has been diverted by other theoretical interests and by concern about the lack of social support for such an orientation. Economic analyses of job discrimination also have been impeded by other theoretical emphasis and by a tendency to confuse civil rights issues with cost-benefit calculations. In sociology, preoccupation with theories of social deviance often has tended to obscure the similarities between the discriminatory barriers confronted by citizens with disabilities and other minority groups. Thus, although ample opportunities exist for contributions from other disciplines in the social sciences, there appears to be a pressing need for political scientists to acquire an increasing interest-and to assume a crucial role-in research on disability policy. Perhaps most importantly, researchers must realize that the ultimate definition of disability is determined by government policy. In recognizing that disability is finally whatever public officials say it is, both social scientists and decision-makers must also be aware that understandings are shaped primarily by the concepts inherited from previous research. Any approach to the formulation of disability policy that fails to encompass the political aspects of this problem, therefore, may be inadequate.
There is obviously a great deal of misunderstanding about disability. In large measure, this phenomenon may be natural because disability is a subject which many people would prefer not to think about. The presence of significant numbers of disabled people may arouse both an aesthetic aversion and a subconscious anxiety about bodily integrity that may be even more overpowering than the fear of death. Perhaps the tendency to project such fears upon them is reflected in a phrase often used by disabled individuals to refer to the nondisabled. They are called "tabs"-"temporarily able bodies." In any event, in an implicit strategy which appears to be sanctioned by public policy, prevailing social mores, and even academic traditions, the predominant approach to disability seems to reflect a desire to keep the topic "out of sight and out of mind." By exploring the implications of the socio-political definition of disability, perhaps much of this neglect can be rectified.
(Notes not listed in the text: 13, 18, 23, 36, 37, 44, and 45. Notes repeated twice: 31 and 43.)
This paper was prepared with the support of a National Science Foundation grant CEE83-03654 and a Fellowship from the National Institute of Handicapped Research. However, any opinions, findings, conclusions, and/or recommendations are those of the author and do not necessarily represent the views of NSF or NIHR.
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9. Berkowitz, Johnson, and Murphy, op. cit., pp. 7-8.
10. C. Esco Obermann, A History of Vocational Rehabilitation (Minneapolis: T. S. Denison, 1965), pp. 223-224, 250, 265.
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12. Frank Bowe, Handicapping America: Barriers to Disabled People (New York: Harper& Row, 1978), 163; Frank Bowe, Rehabilititng America; Toward Independence for Disabled and Elderly People (New York: Harper & Row, 1980, 1980), p. 116.
13. Ibid., p 4.
14. Edwin White, The Development of the Socal Security Act (Madison, Wis.: University of Wisconsin Press, 1963), p. 189.
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17. Berkowitz, Hohnson, and Murphy, op. cit., pp 41-66.
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25. Harlan Hahn, The Issue of Equality: European Perceptions of Employment Policy for Disabled Persons (New York: World Rehbilitation Fund, 1984b), p. 11.
26. Hahn, 1984a, op.cit.
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28. Kleinfield, The Hidden Minority: A Profile of Handicapped Americans (Boston: Atlantic Monthly Press, 1979); Gliedman and Roth, op. cit.
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31. Nowe, 1978, op. cit., pp. 143-151; Gliedman and Roth, op. cit., pp. 196-237; Erwin L. Levine and E. M. Wexler, P.L. 94-142: An Act of Congress (New York: Macmillan, 1981).
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36. Harlan Hahn, "Civil Rights for Disabled Americans: The Foundation of a Political Agenda," paper presented at the Wingspread conference on "Images of Disability/Disabling Images," Racine, Wisconsin, 1984c.
37. Harlan Hahn, "Disability Policy and the Problem of Discrimination," American Behavioural Scientist (forthcoming), 1985.
38. Roger G. Barker, B.A. Wright, L. Meyerson, and M.R. Gonick, Adjustment to Physical Handicap and Illness: A Survey of the Social Psychology of Physique and Disability (New York: Social Science Research Council, 1953), p. 102.
39. Fred Davis, Passage Through Crisis: Polio Victims and Their Families (Indianapolis: The Bobbs-Merrill Co., 1963), p. 138.
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41. Beatrice Wright, Physical Disability: A Psychological Approach (New York: Harper & Row, 1960), pp. 18-19.
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46. Richard V. Burkenhauser and R.H. Haveman, Disability and Work: The Economics of American Policy (Baltimore: Johns Hopkins University Press, 1982), pp. 82-83.
47. Safilios-Rothchild, op. cit., pp. 114-115.
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49. Michael Hanks and D. E. Poplin,, "The Sociology of Physical Disability: A Review of Literature and Some Conceptual Perspectives," Deviant Behavior, vol. 2 (September, 1981), pp. 309-328.
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51. Ibid, p. 766.
52. Hahn, 1984b, op. cit., pp. 13-17.
53. Robert L. Burghdorf, Jr. (ed.), The Legal Rights of Handicapped Persons: Cases, Materials, and Text (Baltimore: Paul H. Brookes, 1980), p. 622.
54. Edward D. Berkowitz, "Social Influences on Rehabilitation Planning," paper presented at the ninth Mary Switzer Memorial Seminaar, New York, 1984, pp. 1-5.
55. Gliedman and Roth, op. cit.
56. Kleinfield, op. cit.
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