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Disability has captured the public’s attention globally, stimulated sociological inquiry, and emerged as an urgent priority for policy makers. This is due to the increased prevalence of functional limitations in society as a result of an aging population, impairments caused by war and landmines, technological innovations that prolong the lives of persons with disabling chronic illnesses, unhealthy lifestyles, and broadened definitions of disability.
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The social and economic costs of disability continue to rise as exemplified in contentious national debates in most industrialized countries over the solvency and future of social welfare systems. The uneven distribution of the global burden of disability within and between countries is recognized by the World Bank and the World Health Organization as a major threat to development in the Third World and a cause of inequality in developed countries (Murray and Lopez 1996). The Institute of Medicine (1997) has emphasized that control of disability-generating infectious and chronic diseases is of vital concern to economic stability, social justice, and world peace. The salience of the problem is highlighted by the growing visibility of disabled persons in public spaces as a result of legislation such as the Americans With Disabilities Act of 1990 (ADA) and intense media coverage of wars, landmine accidents, unhealthy working conditions, and natural disasters in countries around the world. Increasingly accessible environments, personal experience with family members, co-workers, and friends who experience the impact of disability on their lives and the public activism of the disability community also contribute to a public awareness of disability.
1. Definitions, Concepts, And Meanings Of Disability
Disability is defined by a person’s difficulty in performing a task or activity due to an underlying physical or mental dysfunction. However, the specific features of a particular disability are varied, and the ways of identifying and evaluating them are diverse as well. While the disability concept has gained general acceptance by researchers, policy makers, and the public, specific applications and interpretations of the concept vary considerably depending on ideology, cultural context, and intended use (Albrecht and Verbrugge 1999).
Early definitions of disability focused on abnormality, deviance, and inability of individuals to fit into society or perform their expected roles. Disability was a defining master status often coincident with being poor, marginal, sick, and jobless. As modern medicine emerged in the nineteenth century to exert power over the definitions of health and illness, disability was conceived as a personal characteristic residing inside the individual due to some organic abnormality resulting from genetics, disease, or injury. According to this medical model, acceptable disabilities were spinal cord injury, blindness, deafness, schizophrenia, and severe depression. Increasing dissatisfaction with a strictly medical view of disability occurred as people increasingly became aware that disability often resulted from, or was compounded by, physical and social isolation. New definitions consequently emphasize the power of forces external to the individual in defining disability and shaping disabled peoples’ lives (Albrecht 1992, Usten 1997).
Regardless of conceptual preference, real-world programs and policies operate on predominantly medical terms. Medical professionals concentrate on the organic base of disability in their diagnoses and treatment, assessing disability in terms of functional limitations such as independence in activities of daily living such as walking, bathing, working, and thinking. Governments generally base social welfare programs on medical definitions of disability, but they modify their definitions depending on the intent of the specific program. For example, the definition of disability embodied in the ADA emphasizes impairments that limit a person’s ability to perform activities of daily living while the US Internal Revenue code stresses impairments which limit the individual’s ability to work. In sum, the US government has 49 separate definitions of disability. This pattern is typical in other nations as well.
2. Distribution And Causes Of Disability
Recent worldwide assessments indicate that, depending on how disability is measured, about 12–15 percent of the world’s population is disabled. This means, with an estimated world population of six billion people in the year 2000, approximately 846 million were disabled. This disability burden is experienced unequally between less developed and more developed countries. In the year 2000, for example, 4.82 billion people (80.4 percent of the world’s population) lived in the less developed countries of Asia, India, China, Africa, Latin America, the Middle East, and the Caribbean and Pacific Islands, but included 89.3 percent (755 million) of the world’s disabled people. By contrast, the more developed countries of North America, Europe, and Australia, comprising 19.6 percent of the world’s population, had only 11.7 percent (91 million) of the world’s disabled people. The impact of this unequal distribution of disability on the health and development of less developed nations is amplified by the fact that only 10 percent of the health care dollars in the world are spent in less developed countries, where almost 90 percent of the disability is found.
Disability differs in type and distribution within and between countries (Murray and Lopez 1996). In developed countries, the major causes of disability are ischemic heart disease, cerebrovascular disease, and physical inactivity. In poorer nations, nearly half of the disability is due to infectious and childhood diseases and injuries. Disability is increasingly exported from developed to Third World nations in the form of high-risk work such as that found in chemical plants and the low-cost, high-volume labor businesses such as garment making and athletic shoe assembly. Across the entire world, the leading causes of disability are respiratory infections, diarrheal diseases, and conditions arising in the perinatal period. In the year 2020, they are projected to be cerebral vascular disease, depression, and road traffic accidents. In all circumstances, disability is disproportionately experienced by the poor and disenfranchised, but will be experienced increasingly by those more privileged as they live longer with chronic diseases.
3. Models For Analyzing Disability
There are three major theoretical models used to analyze disability: (a) the disability as deviance model, (b) the medical model, and (c) the social model. The disability as deviance model arose from an effort to differentiate between who was normal and therefore accepted in society, and who was abnormal and to be treated as different. This distinction underlies current analyses of inclusion and exclusion in society. The distinction is historically based on appearance, gender, race, ethnicity, age, and nationality, as well as the moral stigma attached to the condition (Stiker 1982). This theoretical approach underscores that disability is a physical and/or mental condition interpreted in a historical, social, and moral context.
The medical model gives power to the physician whose task it is to diagnose and treat disability based on organic abnormalities and function identified through scientific procedures. According to this model, disability is regarded as a medical problem residing in the individual and best tackled through medical treatment. The social model of disability switches emphasis from the physician to disabled persons, and from individuals to the social and physical environment in which they live (Shakespeare 1998). Much of the work on the social model of disability was generated by disabled people themselves, who took an activist stance in embracing a minority group approach to disability (Barnes 1991). They de-emphasize the significance of impairments such as paralysis and low vision, and focus instead on socially constructed barriers such as exclusion and discrimination based on ideology and social values.
Disability studies is an emerging field of study based on the social model of disability (Albrecht et al. 2001). It is being developed by a multidisciplinary group of researchers, academics, government officials, and activists intent on shifting emphasis away from a prevention–treatment–rehabilitation paradigm to a social–cultural–political paradigm. This refocusing effort underscores the agency of disabled persons in defining and shaping their own environment by becoming involved in research, political action, and policy making. The intent is to redefine traditional power relationships between disabled persons and other stakeholders.
4. Disability As A Social And Cultural Product
Recent attention has been given to disability as a symbol and vehicle in art, literature, and film. The representation of disability reflects social and cultural values and presents images that shape public opinion. The key questions are: what does disability signify? and what does disability tell us about a culture or group? An analysis of art and literature reveals that disabled people are often portrayed across history as cripples, lunatics, mendicants, and misfits symbolizing their deviancy and marginality. Yet, when Goya painted maimed veterans, he pointed to the heroism of soldiers in combat and devastation of war, questioning the cost of sovereign power. Likewise, the many Vietnam movies such as The Deerhunter use disability to symbolize the divisions in society over ambiguous wars and conflicting values.
On inspection, great literature is filled with disabled figures: Shakespeare’s mad King Lear, Hugo’s Hunchback of Notre Dame, and the Japanese novelist Oe’s autistic son. These characters tell us about the conception of disabilities in diverse societies, but also suggest universal themes warranting further investigation. Disability is the consequence of foolish or heroic action. Disability is a lonely yet public and community experience. Disabled people are portrayed in the roles of fools or as impotent, yet they have produced some of the world’s great music and art. For example, Beethoven wrote his Ninth Symphony while deaf, and Monet painted his landscapes at Giverny while losing his vision. Disability is an acknowledged part of most cultures, and helps to define the meaning of life, value of the individual, and nature of society.
5. Societal Responses To Disability
The values of a group can be ascertained by the way the community treats its women, children, elderly, and disabled members. As the populations of Western nations become older, and disability is recognized as a major problem inhibiting development in Third World countries, governments are concentrating increased resources on the prevention and management of disability. In many countries of the world, disabled people have been excluded from public affairs by physical barriers which prevent their mobility, and social discrimination which makes school and work difficult at best. For much of the world, out of sight has meant out of mind. Disabled people are often cared for in their homes by their families, or they live on the street as beggars and homeless (Castel 1995). Western European countries have a strong community ethos and social welfare tradition, so disability is addressed through strong social welfare programs focused on keeping people in the community. While there are well-established disability benefits programs in the USA, the emphasis is aimed more at the individual, and institutionalization is a more frequently invoked solution. In either case, disability is becoming an enormously expensive enterprise, testing the values and taxing the resources of many nations. Conservatives argue for limiting benefits and sharply controlling the numbers of people on the disability rolls while liberals maintain that government has a direct obligation to see that disabled people have the minimum resources to live their lives empowered and in dignity. Funding for these programs will necessarily come at the expense of the military and other social programs or through increased taxes. Ultimately, the inclusion or exclusion of disabled people in society will depend on available resources, national values, and the political activism of disabled people.
6. Future Trends
Because of the tremendous cost of providing benefits to an aging population, increased efforts will be made to prevent and better manage disability. Citizens will be encouraged to live with disability in their homes and communities rather than in institutions. While medical technology promises remarkable help in dealing with disability, equal attention will be given to the subjective experience of illness, because people’s experience shapes their lives and those of their families. Finally, there is a growing awareness of the role of spirituality, in the broadest sense of the word, in accepting and managing life with a disability.
Bibliography:
- Albrecht G L 1992 The Disability Business: Rehabilitation in America. Sage, Thousand Oaks, CA
- Albrecht G L, Seelman K, Bury M (eds.) 2001 The Handbook of Disability Studies. Sage, Thousand Oaks, CA
- Albrecht G L, Verbrugge L 1999 The global emergence of disability. In: Albrecht G, Fitpatrick R, Scrimshaw S C (eds.) The Handbook of Social Studies in Health and Medicine. Sage, London, pp. 293–307
- Barnes C 1991 Disabled People In Britain and Discrimination. Hurst and Company, London
- Castel R 1995 Les Metamphorphoses de la Question Sociale. Fayard, Paris
- Institute of Medicine 1997 America’s Vital Interest in Global Health. National Academy Press, Washington, DC
- Murray C J, Lopez A M 1996 The Global Burden of Disease. Harvard University Press, Cambridge, MA
- Shakespeare T 1998 The Disability Reader: Social Science Perspectives. Cassell, London
- Stiker H-J 1982 Corps Infirmes et Societes. Aubier Montaigne, Paris
- Usten B 1997 Beta Version of the ICIDH Manual. World Health Organization, Geneva