Disability: Stigma and Discrimination

Abstract

Disability is connected to the contemporary life sciences in obvious and less obvious ways. A key justification for human genetic research is that it will lead to better understanding of the ‘normal’ human genome and thus of genetically based disability. However, there is abundant evidence that people with physical and mental impairments remain stigmatised, and the potential for science to increase the stigma of disability demands a critical examination of our beliefs about disability, normality and diversity. Where the medical model of disability sees disability as originating in the deviation of an individual from a biological or physiological norm, social models see it generated by the interaction of an anomalous body with the physical and attitudinal constraints of society. These are very different approaches to the role of biology in disability. There is concern that the biomedical model today dominates to the extent of excluding other useful approaches to disability. ‘Genetic discrimination’, not all of which can be eliminated by legislation, remains a risk to people with genetically based disabilities.

Key Concepts:

  • The potential for advances in genetic medicine to prevent disability provides a key justification for genetic research.

  • There is abundant empirical evidence that people with physical and mental impairments remain stigmatised and discriminated against around the world.

  • The focus on disability as a person's difference from normality is reinforced by the ‘medical model’ of disability. Within this framework, disability is seen as a nominative pathology.

  • Alternative models of disability place less emphasis on the individual's ‘problematic body’. For example, in the strong social model, what defines disabled people as a group is the collective of oppression or exclusion from society.

  • There is concern that the biomedical approach to disability, and genetic models in particular, could reinforce the stigma attached to disability.

  • There is a risk of ‘genetic discrimination’ – discrimination directed against people with particular genotypes. Some forms of genetic discrimination can be prevented by legislation, but others, such as the routine pre‐natal screening for and termination of affected pregnancies, are harder to prevent.

  • Some disability theorists are concerned that the stigma of disability will inevitably lead to information about the human genome is used for eugenic purposes.

  • The rapid accumulation of genetic information through the ‘genome revolution’ challenges us to look more critically at our beliefs about diversity and the value of different kinds of human being. This discussion should include the perspectives of disabled people.

Keywords: disability; stigma; medical model; social model; discrimination; genetic medicine

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Further Reading

Kevles DJ (1985) In the Name of Eugenics: Genetics and the Uses of Human Heredity. Berkeley, CA: University of California Press.

Marks D (1999) Disability: Controversial Debates and Psychosocial Perspectives. London, UK: Routledge.

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Thomas C (1999) Female Forms: Experiencing and Understanding Disability. Buckingham, UK: Open University Press.

Wendell S (1996) The Rejected Body: Feminist Philosophical Reflections on Disability. New York, NY: Routledge.

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Scully, Jackie Leach(May 2012) Disability: Stigma and Discrimination. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005210.pub2]