Disability studies
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Disability studies is an academic discipline that examines the meaning, nature, and consequences of disability as a social construct. Initially the field focused on the division between "impairment" and "disability", where impairment was an impairment of an individual's mind or body, while disability was considered a social construction.[1] This premise gave rise to two distinct models of disability: the social and medical models of disability. In 1999 the social model was universally accepted as the model preferred by the field.[2] However, in recent years, the division between the social and medical models has been challenged.[1][3] Additionally there has been an increased focus on interdisciplinary research.[4] For example, recent investigations suggest using "cross-sectional markers of stratification" [5] may help provide new insights on the non-random distribution of risk factors capable of acerbating disablement processes.
Disability studies courses include work in disability history, theory, legislation, policy, ethics and the arts. However, students are taught to focus on the lived experiences of individuals with disabilities in practical terms. the field is focused on increasing individuals with disabilities access to civil rights and improving their quality of life.[6]
Disability studies emerged in the 1980s. In 1986, the Section for the Study of Chronic Illness, Impairment, and Disability of the Social Science Association was renamed the Society for Disability Studies.[7] The first US disabilities studies program emerged in 1994, at Syracuse University.[6] The first edition of the Disabilities Studies Reader (one of the first collections of academic papers related to disability studies) was published in 1997.[8] The field grew rapidly over the next ten years. In 2005, the Modern Language Association established disability studies as a “division of study.” [6]
History
Universities have long studied disabilities from a clinical perspective.[6] In 1986 the Section for the Study of Chronic Illness, Impairment, and Disability of Social Science Association was renamed the Society for Disability Studies[7] and its journal "Disability Studies Quarterly" was the first journal in disability studies. The first US disabilities studies program emerged in 1994, at Syracuse University.[6] However, courses and programs were very few. In the 1997 first edition of the "Disability Studies Reader" Lennard J. Davis wrote that "it had been virtually impossible to have someone teaching about disability within the humanities".[8] In the second edition, written ten years later, he writes that "all that has changed", but "just because disability studies is on the map, does not mean that is easy to find".[9]
Still the field continued to grow throughout the 2000s. In 2009 Disability Studies Quarterly published a A Multinational Review of English-language Disability Studies Degrees and Courses. They found that from 2003 to 2008 the number of disability studies stand alone studies courses in the US, UK, Australia, New Zealand and Canada grew from 56 to 108 and the number of degree granting courses grew from 212 to 420. A total of 17 degrees in disability studies were offered, with 11 programs in the US, 2 in the UK, 3 in Canada, and one in Australia.[10]
A 2014 New York Times article "Disability Studies: A New Normal" suggests that the expansion in disability studies programs is related to the 1990 passage of the Americans with Disabilities Act (ADA). Those raised after the passage of the ADA have entered colleges and the workforce, as Disability Studies has grown. In a 2014 article, Disability Studies Quarterly published an analysis on the relationships between student run groups and disability studies, from 2008 to 2012. Their article analyzes groups at four different universities and describes how professors have incorporated student activism into their curriculum and research.[11] Measuring visual acuity. Visual acuity is measured by use of a snellen's chart
Definitions
According to the transnational[12] Society for Disability Studies:
"Using an interdisciplinary, multidisciplinary approach. Disability sits at the intersection of many overlapping disciplines in the humanities, sciences, and social sciences. Programs in Disability Studies should encourage a curriculum that allows students, activists, teachers, artists, practitioners, and researchers to engage the subject matter from various disciplinary perspectives.
- Challenging the view of disability as an individual deficit or defect that can be remedied solely through medical intervention or rehabilitation by "experts" and other service providers. Rather, a program in Disability Studies should explore models and theories that examine social, political, cultural, and economic factors that define disability and help determine personal and collective responses to difference. At the same time, Disability Studies should work to de-stigmatize disease, illness, and impairment, including those that cannot be measured or explained by biological science. Finally, while acknowledging that medical research and intervention can be useful, Disability Studies should interrogate the connections between medical practice and stigmatizing disability.
- Studying national and international perspectives, policies, literature, culture, and history with an aim of placing current ideas of disability within their broadest possible context. Since attitudes toward disability have not been the same across times and places, much can be gained by learning from these other experiences.
- Encouraging participation by disabled students and faculty, and ensuring physical and intellectual access. Prioritizing leadership positions held by disabled people; at the same time, it is important to create an environment where contributions from anyone who shares the above goals are welcome."[4]
Disability studies and medical humanities
The social model of disability is expanded to chronic illness and to the broader work of the medical humanities.[13] Practitioners are working towards improving the healthcare for disabled people through disability studies. This multi-disciplinary field of inquiry draws on the experiences and perspectives of people with disabilities to address discrimination. Inclusion of disability studies in medical curriculum is being reported as a preliminary step towards bringing medical humanities into classrooms.[14] Infinite Ability has done some preliminary work in India to introduce disability studies to medical students.[15][16][17]
Feminism in Disability Studies
Feminism introduces the inclusion of intersectionality in disability studies. It focuses on race, gender, sexuality, class and other related systems of oppression that can also intersect with having a disability. Feminism integrates the social and political aspects that makes a body oppressed while allowing empowerment to be present in acknowledging its culture. Rosemarie Garland-Thomson explains that these related systems of oppression pervades all aspects of culture by "its structuring institutions, social identities, cultural practices, political positions, historical communities, and the shared human experience of embodiment". Garland-Thomson further describes that "identity based critical enterprises have enriched and complicated our understandings of social justice, subject formation, subjugated knowledges and collective action".[18] Feminism works towards accessibility for everyone regardless of which societal oppressive behavior makes them a minority. Although physical adjustments are most commonly fought for in disability awareness, psychological exclusion also plays a major role oppressing people with disabilities. Sara Ahmed elaborates the mental exclusiveness of privilege in "Atmospheric Walls", that there is an atmosphere that surrounds minority bodies which explains why an intersectionally privileged person could be made uncomfortable simply by being in the same room as a person of color, or in this case someone with a disability.[19]
The intersectionality of both the disabled and LGBTQ community is a more modern subject of study in which the relevance, historically, came about mostly in the 1960s and the 1970s with the surge of advocates in the midst of the vocal liberation and civil rights movements. These communities on their own are topics of numerous deliberations, however they also often link in significance in many ways. The significance of the movements however, began to build momentum and most legal recognition in the 1980s. It was from this age of advocacy that the intersectionality of these two minority groups came into a more clear focus, though it is one continuously growing subject of discussion. It was only in 1974 that the American Psychiatric Association removed homosexuality from their list of mental disorders. In addition to this, it was about forty years later in 2013 that the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) changed the listing of transgender to “gender dysphoria”.
One of the most notable circumstances where the case of these two minority rights come together was the court case In re Guardianship of Kowalski, in which an accident that occurred in 1983 left a thirty-six year old Sharon Kowalski physically disabled with severe brain injuries. The court granted guardianship of her to her homophobic parents who refused visitation rights to her long time partner, Karen Thompson. The court case lasted nearly ten years and was resolved by granting Thompson custody. Thompson would then go on to become the featured speaker at the first Disability Pride Parade in Boston, Massachusetts in 1990. This was a major victory in the realm of gay rights but also called to attention the validity of rights for those who identified under the queer and disabled spectrum. Numerous support groups emerged from necessity to create safe spaces for those identifying in these specific minority groups such as the founding of the Rainbow Alliance of the Deaf in 1977, the Lesbian Disabled Veterans of America group in 1996 which then became the Gay, Lesbian, Bisexual and Transgender Disabled Veterans of America, and the San Francisco Gay Amputees group in 2006.
The American Public Health Association had concluded in a 2012 study that disability was more common in gay, lesbian, and bisexual individuals when compared to heterosexual peers in the study. It was also shown that the gay, lesbian, and bisexual group with disabilities were noticeably younger in age than the heterosexual group. There was a significant difference in the prevalence of mental and physical health between the study groups, a higher statistic of those with queer identities having issues health wise than those straight identifying, reportedly due to the weight of social pressure and discrimination of minority sexual identities.
Though these minority groups do not always intersect, the way they handle their own discrimination, can be compared in similar ways. Being that both the LGBTQ rights movement and the disability rights movements have been defined as minority discrimination movements, it has been said that they are a direct contrast to society normalizing the dominance of heterosexuality and able-bodiedness in its majority population. It is also a large topic of discussion to say that both groups have to undergo the same kind of ‘coming out’ process in terms of their sexual identity, gender identity, and disability identity because of the lasting social stigma.
In more recent years, recognition was brought forward in the media when American model, Nyle DiMarco, won the 22nd season of the television dance show Dancing With the Stars while being the shows second Deaf contestant and the first contestant to participate in a same sex dance routine. DiMarco, who identifies as ‘fluid’ in his sexual orientation, also heads his own non-profit organization The Nyle DiMarco Foundation [1] which was created in 2016 with the mission statement to improve life for Deaf children and their families.
Queer studies which emerged from women's studies, brings light towards the different kind of oppression queer and transgender people with disabilities have. For example, the Americans with Disabilities Act dismisses gender identity disorder because of its moral case against transgender people.[20] Queer studies are commonly associated with people with disabilities who identify as “Crip” and is commonly believed that queer politics must incorporate crip politics.[21] Alison Kafer describes a first person experience of identifying queer and crip both bold reappropriated terms in Kafer's novel, "Feminist Queer Crip". Kafer describes the politics of the crip future and "an insistence on thinking these imagined futures - and hence, these lived presents - differently".[22] Although many activists with disabilities find empowerment in appropriating the term crip, not all people with disabilities feel comfortable using that identity. There are many different terms used as an alternative to disability, for example Melwood, a nonprofit who uses the term "differing abilities", describes the label disability as "a limitation in the ability to pursue an occupation because of a physical or mental impairment; a disqualification, restriction or disadvantage and a lack of legal qualification to do something, was an inadequate or limiting 'label' for a cross section of people".[23] Because the term disability has a history of inferiority, it is believed by many that substituting the term will help eliminate the ableism that is embedded within it. Susan Wendell describes ableism in society "as a structure for people who have no weakness",[24] this also applies to anyone who has any intersectional disadvantages. Feminism identifies these disadvantages and strategizes how to deconstruct the system that supports marginalizing specific groups of people.
Recent scholarship has included studies that explore the intersection between disability and race. Ellen Samuels explores gender, queer sexualities, and disability.[25][26] Christopher Bell’s posthumous[27] volume on Blackness and Disability;[28] and the work of Robert McRuer both explore queerness and disability. These works engage with issues of neoliberal economic oppression. Scholars of Feminist Disability Studies include Rosemarie Garland-Thomson and Alison Kafer. The 2009 publication of Fiona Kumari Campbell’s "Contours of Ableism: The Production of Disability and Abledness" signalled a new direction of research — studies in ableism, moving beyond preoccupations with disability to explore the maintenance of abledness in sexed, raced and modified bodies. Similarly, recent work has focused on the intersections of race and ethnicity with disability in the field of education studies and attempted to bridge Critical Race Studies with Dis/ability studies.[29] This work reflects an effort to deal with complex histories of marking racially "othered" bodies as physically, psychologically, or morally deficient, and traces this history of scientific racism to contemporary dynamics. Empirical studies show that minority students are disproportionately more likely to be removed from class or school for "behavioral" or academic reasons, and far more likely to be labeled with intellectual or learning disabilities.[30] The authors propose a union of critical race and disability studies, DisCrit, as an intersectional approach designed to analyzing the interaction between ableism, sexism, and racism.
In addition to work by individual scholars, disability studies organizations have also begun to focus on disability and race and gender. The Society for Disability Studies created the Chris Bell Memorial Scholarship to honor Bell's commitment to diversity in disability studies.[31] Postsecondary disability studies programs increasingly engage with the intersectionality of oppression. The University of Manitoba offers a course in on "Women with disabilities".[32] Several recent masters' student research papers at the University of York focus on issues related to women with disabilities and people of African descent with disabilities.[33]
Criticism
Questioning the social model
The International Association of Accessibility Professionals [34] recognizes six different models for conceptualizing disability: social, medical, cultural affilitation, economic, charity, and functional solutions. Once universally accepted in the field, the social model of disability [2] has recently been challenged.[3] In a 2014 Disability Studies Quarterly article, students involved in campus disability drops note that they actively seek cures for their chronic illnesses and "question the rejection of the medical model" of disability.[11] The cultural affiliation model accepts the person's disability completely, and uses it a point of pride in being associated with other people in a similar condition.[35] The economic model recognizes the effect of bodily limitations on a person’s ability to work, and there may be a need for economic support and/or accommodations for the person’s disability [36] while the charity model regards people with disabilities as unfortunate and in need of assistance from the outside, with those providing charity viewed as benevolent contributors to a needy population. The functional solutions model of disability is a practical perspective that identifies the limitations (or "functional impairments") due to disability, with the intent to create and promote solutions to overcome those limitations. The primary task is to eliminate, or at least reduce, the impact of the functional limitations of the body through technological or methodological innovation. The pragmatism of the functional solution model deemphasizes the sociopolitical aspects of disability, and instead prioritizes inventiveness and entrepreneurship. This is the prevailing opinion behind compliance literature that promotes self-efficacy and self-advocacy skills for people with disabilities preparing for transition to independent living.[37]
Inclusivity
Exclusion of cognitive and mental disabilities
One major area of contention is the frequent exclusion of the personal experience of impairment, cognitive disability, and illness, which is often left out of most discussion in these circles in the name of "focused" academic discourse.
Disability, race, ethnicity, gender, and sexuality
Disability studies has also been criticised for its failure to engage with or to take into consideration other potential layers of sociopolitical oppression, such as ageism, racism, sexism, transphobia or homophobia, as they may apply to disabled people in these oppressed groups[38]
Notable disability studies theorists
- Michael Bérubé
- James Charlton
- Rosemarie Garland-Thomson
- Laura Hershey
- Robert McRuer
- Tom Shakespeare
- Simi Linton
- Lennard Davis
- Nirmala Erevelles
- Eli Clare
Further reading
- Albrecht, Gary L., ed. Encyclopedia of Disability (5 vol. Sage, 2005)
- Barnes, C. and G. Mercer. Exploring disability [2nd edition]. Cambridge, Polity Press, 2010.
- Bell, Christopher, ed. Blackness and Disability: Critical Examinations and Cultural Interventions (Forecaast Series). LIT Verlag Münster, 2011.
- Burch, Susan, and Paul K. Longmore, eds. Encyclopedia of American Disability History (3 Vol. 2009)
- Burch, Susan and Michael Rembis. Disability Histories. Urbana, IL: University of Illinois Press, 2014.
- Campbell, Fiona K. "Contours of Ableism: The Production of Disability and Abledness", Palgrave Macmillan, 2009.
- Corker, Mairian and Tom Shakespeare. Disability/Postmodernity: Embodying Disability Theory, Continuum, 2002.
- Davis, Lennard J., ed. The Disability Studies Reader. Routledge 1997
- DePoy, Elizabeth, and Stephen Gilson, Studying Disability:. Los Angeles, CA: Sage 2011.
- Guter, Bob, and John R. Killacky, Queer Crips: Disabled Gay Men and Their Stories. New York: Harrington Park Press, 2004.
- Johnstone, David. An Introduction to Disability Studies, David Fulton Publishers Ltd 2001
- Linton, Simi. Claiming Disability: Knowledge and Identity. New York University Press, 1998.
- Lopez; Casasnovas; Nicodemo (2016). "Transition and duration in disability: New evidence from administrative data". Disability and Health Journal. 9 (1): 26–36.
- McRuer, Robert and Michael Bérubé. Crip Theory: Cultural Signs of Queerness and Disability (Cultural Front), NYU Press, 2006.
- Nielsen, K. (2013). A Disability History of the United States. Beacon Press
- Oliver, M. Understanding Disability: From Theory to Practice. New York, Basigstoke, 1996
- Pothier, Dianne and Richard Devlin, eds. Critical Disability Theory: Essays in Philosophy, Politics, Policy, and Law (Law and Society Series), UBC Press, 2006.
- Ronell, A. The Telephone Book: Technology, Schizophrenia, Electric Speech, University of Nebraska Press, 1989.
- Siebers, Tobin Anthony. Disability Theory (Corporealities: Discourses of Disability), University of Michigan Press, 2008.
- Snyder, Sharon, Brenda J. Brueggemann, and Rosemarie Garland-Thomson, eds. Disability Studies: Enabling the Humanities. Modern Language Association, 2002.
- Snyder, Sharon L. and David T. Mitchell. Cultural Locations of Disability, University of Chicago Press, 2006.
- Smith, Bonnie G., and Beth Hutchison, eds. Gendering Disability. Rutgers University Press, 2004.
- Thomas, C. Sociologies of Disability and Illness: contested ideas in disability studies and medical sociology, London, Palgrave, 2007.
- Withers, AJ. Disability Poilitics & Theory, Halifax, Fernwood, 2012.
See also
- Ableism
- Accessibility
- Cultural studies
- Developmental disability
- Future planning
- Inclusion (disability rights)
- Infinite Ability
- List of disability studies journals
- Matching Person & Technology Model
- Social model of disability
- Special education
References
- 1 2 "Session Details: Avenues of Access: The State of Disability Studies". Modern Language Association. Modern Language Association. Retrieved 26 March 2015.
- 1 2 Bickenbacha, Jerome E; Chatterji, Somnath; Badley, E.M.; Üstün, T.B. (1999). "Models of disablement, universalism and the international classification of impairments, disabilities and handicaps". Social Science & Medicine. 48 (9): 1173–1187. doi:10.1016/s0277-9536(98)00441-9. Retrieved 26 March 2015.
- 1 2 "what is disability studies?". Society for Disability Studies. Retrieved 26 March 2015.
- ↑ Siordia C. (2014). Disability Prevalence According to a Class, Race, and Sex (CRS) Hypothesis. Journal of Racial & Ethnic Health Disparities, DOI: 10.1007/s40615-014-0073-8.
- 1 2 3 4 5 CAPUZZI SIMON, CECILIA (1 November 2013). "Disability Studies: A New Normal". The New York Times. Retrieved 26 March 2015.
- 1 2 "Mission and History". Society for Disability Studies. Retrieved 26 March 2015.
- 1 2 Davis, Lennard J., ed. (1997). The disability studies reader. New York: Routledge. ISBN 9780415914703.
- ↑ Davis, Lennard J., ed. (2006). The disability studies reader (2nd ed. ed.). New York: Routledge. ISBN 9780415953337.
- ↑ "A Multinational Review Of English-Language Disability Studies Degrees And Courses". Disability Studies Quarterly. 29 (3). 2009. Retrieved 26 March 2015.
- 1 2 Stout, Allegra; Schwartz, Ariel (2014). ""It'll Grow Organically and Naturally": The Reciprocal Relationship between Student Groups and Disability Studies on College Campuses". Disability Studies Quarterly. 34 (2). Retrieved 26 March 2015.
- ↑ "About". Society for Disability Studies. Retrieved 26 March 2015.
- ↑ Garden, R (December 2010). "Disability and narrative: new directions for medicine and the medical humanities.". Medical humanities. 36 (2): 70–4. doi:10.1136/jmh.2010.004143. PMID 21393285.
- ↑ "Disability Studies in Medical Education". Retrieved 19 October 2012.
- ↑ Singh, S; Khosla, J; Sridhar, S (July 2012). "Exploring medical humanities through theatre of the oppressed.". Indian Journal of Psychiatry. 54 (3): 296–7. doi:10.4103/0019-5545.102461. PMC 3512382. PMID 23226869.
- ↑ Khetarpal, A; Singh, S (2012). "Infertility: Why can't we classify this inability as disability?". The Australasian medical journal. 5 (6): 334–9. doi:10.4066/AMJ.2012.1290. PMC 3395292. PMID 22848333.
- ↑ Singh, S (May 2012). "Broadening horizons: looking beyond disability.". Medical education. 46 (5): 522. doi:10.1111/j.1365-2923.2012.04246.x. PMID 22515781.
- ↑ "Garland-Thomson, Rosemarie. "Integrating disability, transforming feminist theory." NWSA journal 14.3 (2002): 1-32.".
- ↑ "Ahmed, Sara N. "Atmospheric Walls." Feministkilljoys. N.p., 2014. Web. 10 Oct. 2016".
- ↑ "Barry, Kevin M., Disabilityqueer: Federal Disability Rights Protection for Transgender People (February 18, 2014). Yale Human Rights and Development Law Journal, Forthcoming".
- ↑ "McRuer, By Robert. "Cripping Queer Politics, or the Dangers of Neoliberalism."SF Online. Bernard Center for Research on Women, n.d. Web. 2011.".
- ↑ Kafer, Alison. Feminist, queer, crip. Indiana University Press, 2013.
- ↑ ""Disabilities vs. Differing Abilities." Melwood. N.p., n.d. Web.".
- ↑ Wendell, Susan. "Toward a feminist theory of disability." Hypatia 4.2 (1989): 104-124.
- ↑ "Department of Gender and Women's Studies". Womenstudies.wisc.edu. 2013-02-27. Retrieved 2013-05-07.
- ↑ "Women and Disability: Feminist Disability Studies [Disability Studies]". Disabilitystudies.syr.edu. Retrieved 2013-05-07.
- ↑ BA Haller (2009-12-26). "Media dis&dat: Obituary: Chris Bell, disability studies scholar on race, HIV/AIDS, dies". Media-dis-n-dat.blogspot.ca. Retrieved 2013-05-07.
- ↑ Blackness and Disability: Critical Examinations and Cultural Interventions - Google Boeken. Books.google.com. Retrieved 2013-05-07.
- ↑ Annamma, Subini Ancy (18 November 2015). "Dis/ability critical race studies (DisCrit): theorizing at theintersections of race and dis/ability". Race Ethnicity and Education.
- ↑ Annamma, Subini Ancy (18 November 2015). "Dis/ability critical race studies(DisCrit): theorizing at theintersections of race and dis/ability". Race Ethnicity and Education.
- ↑ "chris bell memorial scholarship". Society for Disability Studies. Retrieved 26 March 2015.
- ↑ "Disability Studies Courses". University of Manitoba. Retrieved 26 March 2015.
- ↑ "COMPLETED MA PROJECT RESEARCH PAPERS". York University. Retrieved 26 March 2015.
- ↑ "Certified Professional in Accessibility Core Competencies". International Association of Accessibility Professionals. Retrieved 23 July 2016.
- ↑ Shapiro, J (1994). No Pity: People with Disabilities Forging a New Civil Rights Movement. Broadway Books.
- ↑ Strnadová, I; Cumming,, Therese (2015). Lifespan transitions and disability : A holistic perspective. Routledge.
- ↑ "Transition of Students With Disabilities To Postsecondary Education: A Guide for High School Educators". .ed.gov. Retrieved 2016-08-25.
- ↑ Caldwell, K. (2010). "We Exist: Intersectional In/Visibility in Bisexuality & Disability". Disability Studies Quarterly. 30. Retrieved 26 March 2015.
External links
- Review of Disability Studies: An International Journal
- Society for Disability Studies
- Considering Disability Journal
- Disability Studies Association
- Disability Studies Quarterly
- National University of Ireland, Galway: List of Disability Related Academic Journals, with impact factors
- Syracuse University Journals & Databases for Disability Studies]