Digital post by Wonder Woman
“Disability Series,” by Dadu Shin.
Rebecca Garden’s article “Whom Speaks for Whom” (2015) argues that health humanities seeks to advocate for underrepresented patients, those whose illness experiences are often overlooked. She expresses while representation in health humanities is a well-intentioned way of attempting to give voice to such patients, it may also, in turn, reinforce stigma. For instance, she notes that often in such narratives, often the only medical aspect of a person’s condition is mentioned while overlooking the socio-political factors influencing the patient’s life. There may also be misrepresentation of the patient’s story which further stigmatizes individuals.
Speaking on similar issues, in “Project Re*vision”, Rice et al. (2015) asserts that people with disabilities tend to be ignored by society or, when portrayed, often via negative depictions. Through this article, I think about how the failure to thoughtfully include people with disabilities is rooted in ableism, a form of discrimination directed against people with disabilities. It consists of ideas and practices that view people with disabilities as inferior to able-bodied individuals and therefore in need of “fixing” in order to live in society. Such discrimination leads to the marginalization of people with disabilities as their rights may be refused to be recognized by society. But with the introduction of the Disability Rights Movement in the 70s, there has been more recognition of people with disabilities (Rice et al, 2015). Yet Rice et al. (2015) notes that the Disability Rights Movement failed to include those with more invisible disabilities and minority populations (Rice et al, 2015). Even now, there still tends to be a lack of representation for disabled people of colour.
Rice et al. (2015) states that “disability representations may run the risk of creating a ‘single story’ – typically accounts of disability told from the perspective of white, westernized, middle-class, physically disabled men” (p. 514). The problem with creating such a single story is that it ignores the unique social sufferings of people outside this classification and makes it appear as if the disability experience is the same for everyone when this is not the case.
There are clear intersections between race and disability, but Garden (2015) notes that such sociocultural aspects are often ignored in representations of health and healthcare narratives. In doing so it ignores the problem of racial discrimination in healthcare among people with disabilities. For instance, it has been reported in (forensic) mental health systems, people of colour, especially Black Canadian men, tend to encounter harsher treatments than non-racialized people. What I take from Garden’s (2015) article is that she calls us to remember that many inequities and differing social experiences persist in the healthcare system and as such when storytellers create narratives of the patient experience in health humanities, the stories have to recognize and reflect this.
A shared premise of both articles, s how the medicalization of the illness experience provides a narrow focus on the lives of patients. Both articles convey that narratives can uphold or take away the power of certain kinds of people in the way stories about them are told. They call to the importance of inclusive representation and the need for intersectionality in just the context of health humanities, but health related research and policy as a whole.
I think that both authors highlight that representation is important because health narratives shape how we understand, conceptualize and act when we are confronted with health issues. But we have to consider the kinds of ways we represent stories because when there is a lack of diversity, negative stereotypes may be reinforced. As well, representation can (un)intentionally cause harm to people by ignoring, misunderstanding or even seeking to profit off of certain kinds of suffering (Garden, 2015). Therefore, it is important to view health narratives from an intersectional lens so that healthcare professionals can consider the differences in suffering when a person has multiple social identities that shape their everyday experiences. In doing so more equitable practices can be reinforced in the treatment and care of patients.
Works Cited:
Annie Elainey. (2016, September 22). Why is Disability Representation So White?
#DisabilityTooWhite [Video file]. Retrieved from https://www.youtube.com/watch?v=X6daBu3ACbc
Frederick, A., & Shifrer, D. (2019). Race and disability: From analogy to intersectionality.
Sociology of Race and Ethnicity, 5(2), 200-214.
Galer, J. (2015). In The Canadian Encyclopedia. Disability Rights Movement in Canada.
Retrieved from https://www.thecanadianencyclopedia.ca/en/article/disability-rights-movement
Garden, R. (2015). Who speaks for whom? Health humanities and the ethics of
representation. Medical Humanities, 41(2), 77-80.
Hankivsky, O., & Christoffersen, A. (2008). Intersectionality and the determinants of health: a
Canadian perspective. Critical Public Health, 18(3), 271-283.
Health humanities. (n.d.). In Wikipedia. Retrieved November 21, 2019, from
https://en.wikipedia.org/wiki/Health_humanities
Institute for Healthcare Improvement – IHI. (2016, February 17). What Is Health Equity and
Why Does It Matter? [Video file]. Retrieved from https://www.youtube.com/watch?v=CwBEkGurMiY
Ontario Human Rights Commission. (n.d.). 9.5. Intersections with race and related grounds.
Retrieved from http://www.ohrc.on.ca/en/9-mental-health-addictions-and-intersecting-code-grounds/95-intersections-race-and-related-grounds#_ftn67
Privilege Uncensored (n.d.). Challenge Ableism. Retrieved from
https://privilegeuncensored.wordpress.com/what-is-able-bodied-privilege-3/
Rice, C., Chandler, E., Harrison, E., Liddiard, K., & Ferrari, M. (2015). Project Re• Vision:
Disability at the edges of representation. Disability & Society, 30(4), 513-527.
Sisson Runyan, A. (2018). What is Intersectionality and Why Is It Important?. Retrieved from
https://www.aaup.org/article/what-intersectionality-and-why-it-important#.XdoL6TJKiT9
Smith, Leah. (n.d.). Ableism. Retrieved from http://cdrnys.org/blog/uncategorized/ableism/
Woodward, S. (2015). Let’s Talk About Invisible Disabilities. Retrieved from
https://www.rickhansen.com/news-stories/blog/lets-talk-about-invisible-disabilities