Disabilities Studies

Definition


Disabilities, and who is considered "disabled", are ideas that are largely socially constructed and are therefore best understood within particular cultural contexts. Disabilities Studies explores the socio-cultural understanding disability. Of importance to Disabilities Studies are perceptions of the personal and collective capabilities and experiences of people considered "disabled".

The United Cerebral Palsy Organization offers these definitions for the term "disability" as it refers to individuals:
a) a physical or mental impairment that substantially limits one or more of the major life activities
b) a record of such impairment
c) being regarded as having such an impairment
(http://www.ucp.org/)

History


Disabilities Studies is a relatively new field of study, and is thought to have taken inspiration from the cross-disciplinary critical theories that emerged in the 1970's (feminist theory, critical race theory, etc.).
Founded in 1982 but renamed in 1986, The Society for Disability Studies "promotes the study of disability in social, cultural, and political contexts. Disability Studies recognizes that disability is a key aspect of human experience, and that the study of disability has important political, social, and economic implications for society as a whole, including both disabled and nondisabled people" as stated in their Mission Statement (www.disstudies.org).

The Society for Disabilities Studies guidelines for "Disabilities Studies" programs include:
  • A multidisciplinary approach and the consideration of national and international perspectives and policies
  • Intellectual and active challenges to limiting views of disability as an individual defect to be remedied through medicine or rehabilitative interventions. The focus, according to these guidelines, should be on a better understanding and de-stigmatization of disability.
  • Encouraging participation of disabled and non-disabled students and scholars while promoting leadership by disabled persons

Perceptions of disability, similar to other social constructions such as race and gender, change in time and space. An illustration of the dynamism of these perceptions is the fact that in the United States, The Americans with Disabilities Act (which prohibits discrimination based on perceived disabilities) was passed relatively recently by Congress in 1990.

Major Figures


Robert Murphy contributed insightful anthropological literature in his exploration of disability; particularly the implications of disability and how that experience affects and involves others. When Murphy was diagnosed with a slow-growing spinal tumor, he wrote from a uniquely emic perspective about the experiences of a disabled person. Perhaps his most significant contribution to Disability Studies was The Body Silent: The Different World of the Disabled (1987). Murphy emphasized personal and contextual perspectives in his writing; he said, "Disability is defined by society and given meaning by culture; it is a social malady".[1]

Murphy credits Erving Goffman as one of the seminal authors on stigma; he credits Goffman with drawing attention to the "social consequences of physical impairment" . Murphy's joint effort with other Columbia University anthropologists expands upon conventional understandings. At the time of their writing, disability was seen as merely deviance from a healthy, able-bodied norm, and/or disabled people were unwitting victims of stigma. Reflecting upon his own experience with physical "disability", Murphy clamis that disabled people are reduced to a state of liminality. "Whether viewed as outsiders or as the symbolic other, the physically handicapped have long been recognized as being separate and apart... Liminal people, as the word denotes, are at a threshold. They are marginal to society - poised perhaps to enter, but still outside its boundaries."[2]

Disabilities Studies is not without its critics. Patterson (1999) accuses disabilities scholars of simplifying the body as "a passive recipient of social forces." [3] Patterson's critique is that Disabilities Studies has not been able to transcend the Cartesian dualism so characteristic of biomedical Modernist thinking. He argued that the socialized model of Disabilities Studies was too restrictive and kept the disabled body from emancipation. Patterson offered a phenomenological approach as an alternative and/or supplemental approach to Disabilities Studies. He argued that phenomenology (the study of subjective experience) prioritizes bodily agency as part of the unique phenomenon of disability.

Anthropology can contribute significantly to Disabilities Studies through its hallmark research method, ethnography. Ethnography can be used to explore the lived experience of disability in a world dominated by non-disabled people. Ethnography would be effective for highlighting the phenomenological aspects of disability as well as revealing non-disabled people's perceptions about disability.

Examples


Autism: Cultural Constructs vs. Community

Stigma, curiosity and fears surrounding autism have largely been shaped by a biomedical paradigm. This paradigm operates under the assumption that disability is conceptualized as deviance from a healthy “norm”. In this purview, people with perceived disabilities are hindered by deficits and/or shortcomings that need to be “fixed”. Alternative approaches, such as those purported by disabilities studies, do not assume that people are disabled by being physiologically diverse. Alternatively, they see culturally sanctioned limitations as disabling forces acting upon people. “It is in the
sociocultural environment that fails to support difference and generates intolerance for
diversity that disability is constructed." [4]

Bagatell uses ethnography to offer an alternate understanding to biomedical constructions of autism as a disability. Her research among “high functioning autistic adults”[5] documents an emergent autistic community. Her research is a provocative example of paradox in the categorization of “disabled” people. Autistic individuals, “characterized by significant social and communication deficits” under a biomedical paradigm, are revealed as socially aware agents capable of challenging pervasive assumptions of their lived realities.

She cites three historical factors as significantly contributing to the emergence of an autistic community: 1) the broadening of the autism spectrum to include similar autism spectrum disorders; 2) the influence of disability rights movements and self-advocacy; and 3) technological breakthroughs, including the internet [6]

Discourse within the Autistic community further exposes the paradox between biomedical understandings of autism and emic understandings. From the emic perspective, “Autism is seen as a neurological ‘difference’, not a disease or illness. Key are the concepts of ‘tolerance’ and ‘neurodiversity’, a term used to suggest that differences in neurological development should be accepted and respected”[7]

Individuals are all too often mis-labled and their experiences over-simplified by the limiting term "disability". Autism is one example of how perspectives offered through Disabilities Studies and anthropological research methods can be helpful in understanding complex systems of subjectivity, identity, and capability.

Helpful/Related Terms


  • See sick role as another example of how culture influences the obligations and understandings surrounding deviation from socially accepted or assumed health "norms".




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dISABILITIES VS DISABILITY Devva.Kasnitz Devva.Kasnitz 0 0 Mar 24, 2017 by Devva.Kasnitz Devva.Kasnitz


Further Reading


Murphy, Robert F.
1987 The Body Silent. Norton. New York.
The Society for Disabilities Studies: www.disstudies.org
United States Department of Justice: http://www.ada.gov/pubs/ada.htm
The United Cerebral Palsy Organization: http://www.ucp.org

References


  1. ^ Murphy, R. F.; Scheer, J.; Murphy, Y.; and Mack, R. 1988 Physical Disability and Social Liminality: A Study in the Rituals of Adversity.
    Social Science Medicine 26(2):235.
  2. ^ Murphy, R. F.; Scheer, J.; Murphy, Y.; and Mack, R. 1988 Physical Disability and Social Liminality: A Study in the Rituals of Adversity.Social Science Medicine 26(2):235
  3. ^ Patterson, K. 1999 Disability Studies and Phenomenology: The carnal policies of everyday life. Disability Society 14(5)597.
  4. ^ Bagatell, N. 2010 From Cure to Community: Transforming Notions of Autism. Ethos: Dialogues in Philosophy and Social Science 38(1):33.
  5. ^ Bagatell, N. 2010 From Cure to Community: Transforming Notions of Autism. Ethos: Dialogues in Philosophy and Social Science 38(1):33.
  6. ^ Bagatell, N. 2010 From Cure to Community: Transforming Notions of Autism.
    Ethos: Dialogues in Philosophy and Social Science 38(1):33.
  7. ^ Bagatell, N. 2010 From Cure to Community: Transforming Notions of Autism.Ethos: Dialogues in Philosophy and Social Science 38(1):33.p 38.