Disability Research Paper

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Disability, and what it means to be a disabled person, is socially, culturally, and historically created. Disability studies, and associated disability research, is a relatively recent and burgeoning arena within the social sciences. This entry shall first summarize the shift in understandings by contrasting the individual and social models of disability—a model being a set of assumptions about how an event or process operates. The entry then explores the implications of this shift in disability research and policy. Finally, the entry looks toward future possibilities in establishing the full participatory citizenship of disabled people.

Disability Models

Within every society there are competing models of disability, with some being more dominant than others at different times. The most dominant model of disability is the individual model, which is based upon the assumption that the difficulties disabled people experience are a direct result of their individual physical, sensory, or intellectual impairments (Oliver and Sapey 2006). Thus, the blind person who falls down a hole in the pavement does so because he or she cannot see it, and the person with a motor impairment fails to get into a building because of his or her inability to walk. Problems are thus viewed as residing within the individual. The individual model of disability is deeply ingrained and “taken as given” in the medical, psychological, and sociological literature. Even in the literature on the sociology of health and illness, disability, as disabled people define it, is basically ignored (Barnes and Mercer 1996).

The medical model can be regarded as a subcategory of the overarching individual model of disability, where disability is conceived as part of the disease process, as abnormality, and as individual tragedy—something that happens to unfortunate individuals on a more or less random basis. Treatment, in turn, is based upon the idea that the problem resides within the individual and must be overcome by the individual’s own efforts (French 2004). Disabled people have, for example, been critical of the countless hours they have spent attempting to learn to walk or talk at the expense of their education and leisure (Oliver 1996).

None of these arguments implies that considering the medical or individual needs of disabled individuals is wrong; the argument is that the individual model of disability has tended to view disability only in those terms, focusing almost exclusively on attempts to modify people’s impairments and return them or approximate them to “normal.” The effect of the physical, attitudinal, and social environment on disabled people has been ignored or regarded as relatively fixed, which has maintained the status quo and kept disabled people in their disadvantaged state within society (Oliver and Sapey 2006).

The social model of disability is often referred to as the “barriers approach,” where disability is viewed not in terms of the individual’s impairment, but in terms of environmental, structural, and attitudinal barriers that impinge upon the lives of disabled people and that have the potential to impede their inclusion and progress in many areas of life, including employment, education, and leisure, unless the barriers are minimized or removed (Oliver 1996). These barriers include inaccessible education or lack of education, inaccessible information and communication systems, inaccessible working environments, inadequate or lacking disability benefits, discriminatory health and social-care services, and inaccessible transport, housing, public buildings, and amenities (Swain et al. 2004). The social model of disability also encompasses the tragedy model in all its manifestations, such as the devaluation of disabled people through negative images in the media, including films, television, and newspapers (Darke 2004).

The social model of disability locates disability not within the individual disabled person, but within society. Thus the person who uses a wheelchair is not disabled by paralysis but by building design, lack of lifts, rigid work practices, and the attitudes and behavior of others. Similarly, the visually impaired person is not disabled by lack of sight, but by lack of reading materials in Braille, cluttered pavements, and stereotypical ideas about blindness. The social model takes a holistic approach in that specific problems experienced by disabled people are explained in terms of the totality of disabling environments and cultures (Oliver 2004).

The social model of disability has arisen from the thinking and writings of disabled people themselves, and particularly from the disabled people’s movement. The disabled people’s movement comprises organizations of disabled people in which disabled people are in positions of control.

Global Attitudes Toward Disability

The experiences of disabled people in the Western world gave birth to the social model of disability. It is an expression of commonality and resistance to the dominant individual, medical, and tragedy models. To look globally, however, raises a possibly more complex and controversial picture. On one hand is the social and historical construction of disability. To be impaired and disabled in China, in Afghanistan, in Zambia, or in the United States—in the high-income “developed” or minority world and the low-income “developing” or majority world—addresses widely differing experiences and encompasses different meanings. Perhaps not surprisingly, the picture is complex, including both cultural diversity and commonalities (Flood 2005; Sheldon 2005). Provision for disabled people also varies greatly from country to country. Most countries in the majority world, for instance, do not have a welfare state.

Though attitudes toward disability are generally universally negative, there are cultural differences (Ingstad and Reynolds Whyte 1995). First are the ways in which the body and physical characteristics are given value and meaning. Western biomedical definitions of impairment are not universal, and perceptions of the body and mind vary across cultures and also change over time (Hughes 2002). Religion and the messages various religious doctrines convey about disability are also significant (Ingstad and Reynolds Whyte 1995), as is language and the notion that key concepts may not easily translate into other languages and cultures (Stone 1999b).

Notwithstanding the importance of cultural differences, subtle and not so subtle, it can be argued that commonality is an overriding picture. Commonality is engendered particularly by multideprivation, predominantly through common experiences of poverty. Disabled people are the poorest of the poor in all countries, in terms of relative poverty in the developed world and in terms of absolute poverty in the developing world (Stone 1999a).

The establishment and growth of an international disabled people’s movement, particularly through the Disabled Peoples’ International (DPI), is in part at least an expression and realization of such commonality. As of 2007 DPI represented approximately 130 national assemblies, many of which, in turn, represent thousands of disabled individuals with all manner of impairments, including people with intellectual impairment. In 1992 DPI acknowledged that it was a human rights organization and that its membership was individually and collectively committed to global justice for disabled people. DPI is also committed to ensuring that the voice of disabled people is heard in the development of all policies and programs that directly affect them, a commitment expressed in the DPI slogan, Nothing About Us Without Us. As a result, DPI has had considerable influence in formulating the United Nations World Programme of Action Concerning Disabled Persons (1983) and the United Nations Standard Rules on Equalization of Opportunities for Persons with Disabilities (1993).

In 1992 DPI joined other international disability organizations to set up an international information network on disability and human rights with the objective of supporting disabled people’s actions at the grassroots to implement those rights. This network, Disability Awareness in Action, published a monthly newsletter, the Disability Tribune, from 1992 to 2005 and produces numerous resource kits on issues of particular concern, such as organization building, consultation and influence, campaigning, and working with the media (Hurst 2005).

Disability Research and Social Policy

Turning to research, estimates of the number of disabled people are problematic given the variations in definitions of disability, both nationally and internationally, and the wide variety of associated impairments (Swain and French 2004). Estimates suggest that there are around 500 million disabled people in the world population. The majority, around 80 percent, of disabled people live in the developing world, the main causes of impairment being poverty, inadequate sanitation, malnutrition and a poor water supply, and more recently AIDS. Furthermore, statistics from European countries suggest that the percentage of the population that is disabled increases with age, particularly for certain disabilities such as visual impairment and hearing loss. Figures concerning comparative numbers of people in employment and education show that people with impairments are among the most disadvantaged groups around the world (Giddens 2006).

Such statistics are clearly important for disabled people, their supporters, service providers, and policymakers in establishing mandates for change. The development of the social model, however, has underpinned critiques of research, challenging who controls and produces research, priorities in funding, and ultimately the establishment of full citizenship for disabled people (Barnes 2004). Again, the central argument is that the individual model has dominated research. Negative impacts have also come from global genetic advances and assessments of disabled people’s quality of life, as well as multinational pharmaceutical companies’ hold over research, patenting, and genetic advances; the invisibility of disabled people from mainstream activity and information; and the silence of disabled people’s voices in the corridors of power and change (Hurst 2003). Statistics, whether valid or reliable, relating to the numbers of disabled people provide no information about the availability of accessible houses, transport, or so-called public buildings. Such counting of heads can carry the connotation that it is disabled individuals who create the “problem,” rather than the disabling society. The social model has fueled arguments for a different methodological approach to researching disability issues, an approach that is informed by the social model and in which the production of research is controlled by disabled people. Associated developments in social science research are generally subsumed under the umbrella term emancipatory research (Barnes 2004).

In terms of social policy, the international shift driven by the social model is evident in the establishment of rights-based policy, both civil and human. By 2007 antidiscriminatory legislation had been enacted in at least forty UN member states. There are, however, significant differences in these legislative frameworks, and general critiques focus on the lack of clear and effective enforcement mechanisms, with terms such as reasonable adjustment providing broad grounds for noncompliance—that is, antidiscriminatory legislation that allows for and legalizes discrimination against disabled people. Furthermore, the social model should not be simplistically equated with what has come to be referred to as the rights-based model. The social model encompasses and informs broader mandates for social change in realizing social justice for disabled people.

One broader front for social change has been developed under the banner of independent living (Barnes and Mercer 2006). This concept, as defined by disabled people themselves, is founded on four basic assumptions:

  1. All human beings are of equal worth, regardless ofthe nature, complexity, or severity of their impairments.
  2. Everyone, regardless of the nature, complexity, orseverity of their impairments, has the capacity to make choices in controlling their lifestyles and should be supported in making such choices.
  3. Disabled people have the right to exercise controlover their lives.
  4. Disabled people have the right to participate fully inall areas—economic, political, and cultural—of mainstream community living on an equal basis with their nondisabled peers.

The independent-living movement began through the establishment of centers for independent living (CILs), which are self-help organizations for disabled people that are run and controlled by disabled people themselves. There are now CILs or similar organizations providing support for disabled people and their families in many countries around the world. Furthermore, the idea of independent living, as conceived by disabled people, has had a notable impact on disability policy globally. Disabled people and organizations of disabled people have increasingly become involved in policymaking at local, regional, national, and international levels (Barnes and Mercer 2006).

Turning finally to the possible directions for disability policy and social science research, the goal remains essentially the same: the creation of a society in which all disabled people are able to participate as equal citizens. Under the umbrella of independent living, this includes equal access to mainstream education, paid employment, transport, “public” buildings, housing, leisure, and healthand social-care services. Mainstreaming is a key concept. The mainstreaming of disability issues within policy agendas addresses the marginalization of the needs and rights of disabled people and their treatment as “special” cases. This presents fundamental challenges to policymaking in realizing the prerogatives of flexibility, the expertise of disabled people, and the recognition that “one size does not fit all.” Mainstreaming also requires the breaking down of the physical, social, communicative, and economic barriers that prevent disabled people from exercising their rights and participating in policymaking.

The creation of participative citizenship will involve the strengthening and enforcement of legislation and procedures to ensure that disability and independent-living issues are fully integrated into policymaking at all levels: international, national, regional, and local. This includes the enactment of binding and intractable antidiscrimination legislation with effective enforcement and compliance requirements. The economic and management implications include the financing of organizations of disabled people, including CILs, and research controlled by disabled people, particularly organizations of disabled people and their representatives.

There are, furthermore, democratic and participatory possibilities afforded by the Internet and other technological developments. These technologies have opened up opportunities for dialogic, or participative rather than representative, democracy. The Internet allows a greater diversity of voices to be heard and has the potential to be profoundly democratizing. The danger is the possibility of the further marginalization of the “unconnected,” the disabled people who are the poorest of the poor, for whom survival is the political perspective and for whom sophisticated technology is not available. It is also the case that new technologies are developed within disabling societies and are not available to many disabled people unless adaptations are made that are often expensive (Goggin and Newell 2003).

Overall, paramount to the evolving direction is the emerging voices of disabled people in controlling decisionmaking processes across policy and research that shapes day-to-day lifestyles, opportunities, and choices. It is an ongoing struggle for a truly equitable and inclusive society with justice and full participative citizenship for all.

Bibliography:

  1. Barnes, Colin. 2004. Reflections on Doing Emancipatory Disability Research. In Disabling Barriers—Enabling Environments, ed. John Swain, Sally French, Colin Barnes, and Carol Thomas, 47–53. 2nd ed. London: Sage.
  2. Barnes, Colin, and Geoffrey Mercer, eds. 1996. Exploring the Divide: Illness and Disability. Leeds, U.K.: Disability Press.
  3. Barnes, Colin, and Geoffrey Mercer. 1997. Doing Disability Research. Leeds, U.K.: Disability Press.
  4. Barnes, Colin, and Geoffrey Mercer. 2006. Independent Futures: Creating User-led Disability Services in a Disabling Society. Bristol, U.K.: Policy Press.
  5. Darke, Paul Anthony. 2004. The Changing Face of Representations of Disability in the Media. In Disabling Barriers—Enabling Environments, ed. John Swain, Sally French, Colin Barnes, and Carol Thomas, 100–105. 2nd ed. London: Sage.
  6. Flood, Tara. 2005. “Food” or “Thought”? The Social Model and the Majority World. In The Social Model of Disability: Europe and the Majority World, ed. Colin Barnes and Geoffrey Mercer, 180–192. Leeds, U.K.: Disability Press.
  7. French, Sally. 2004. Enabling Relationships in Therapy Practice. In Enabling Relationships in Health and Social Care, ed. John Swain, Jim Clark, Karen Parry, et al., 95–108. Oxford, U.K.: Butterworth-Heinemann.
  8. Giddens, Anthony. 2006. Sociology. 5th ed. Cambridge, U.K.: Polity.
  9. Goggin, Gerard, and Christopher Newell. 2003. Digital Disability: The Social Construction of Disability in New Media. London: Rowman and Littlefield.
  10. Hughes, Bill. 2002. Disability and the Body. In Disability Studies Today, ed. Colin Barnes, Mike Oliver, and Len Barton, 58–76. Cambridge, U.K.: Polity.
  11. Hurst, Rachel. 2003. Conclusion: Enabling or Disabling Globalization. In Controversial Issues in a Disabling Society, ed. John Swain, Sally French, and Colin Cameron, 161–170. Buckingham, U.K.: Open University Press.
  12. Hurst, Rachel. 2005. Disabled People’s International: Europe and the Social Model of Disability. In The Social Model of Disability: Europe and the Majority World, ed. Colin Barnes and Geoffrey Mercer, 65–79. Leeds, U.K.: Disability Press.
  13. Ingstad, Benedicte, and Susan Reynolds Whyte. 1995. Disability and Culture. Berkeley: University of California Press.
  14. Oliver, Michael. 1996. Understanding Disability: From Theory to Practice. London: Macmillan.
  15. Oliver, Michael. 2004. If I Had a Hammer: The Social Model in Action. In Disabling Barriers—Enabling Environments, ed. John Swain, Sally French, Colin Barnes, and Carol Thomas, 7–12. 2nd ed. London: Sage.
  16. Oliver, Michael, and Bob Sapey. 2006. Social Work with Disabled People. 3rd ed. Basingstoke, U.K.: Macmillan.
  17. Sheldon, Alison. 2005. One World, One People, One Struggle? Towards the Global Implementation of the Social Model of In The Social Model of Disability: Europe and the Majority World, ed. Colin Barnes and Geoffrey Mercer, 115–130. Leeds, U.K.: Disability Press.
  18. Stone Emma. 1999a. Disability and Development: Learning from Action and Research on Disability in the Majority World. Leeds, U.K.: Disability Press.
  19. Stone Emma 1999b. Modern Slogan, Ancient Script: Impairment and Disability in the Chinese Language. In Disability Discourse, ed. Marian Corker and Sally French, 136–147. Buckingham, U.K.: Open University Press.
  20. Swain, John, and Sally French. 2004. Researching Together: A Participatory Approach. In Physiotherapy: A Psychosocial Approach, ed. Sally French and Julius Sim, 317–331. 3rd ed. Oxford, U.K.: Elsevier.
  21. Swain John, Sally French, Colin Barnes, and Carol Thomas, eds. Disabling Barriers—Enabling Environments. 2nd ed. London: Sage.

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