Update 3: Answering the ‘Why’ Question, Significance of My Findings

Much of my research thus far has focused primarily on determining whether the dominant political discourse on disability is framed through the medical model. My empirical evidence, including the focus and allocation of NIH research funds, and the framing of charity advocacy campaigns, indicates that political discourse does tend to reinforce this medicalized imaginary of disability. Now, I am onto the stage of research and paper writing where I must determine what this means for politics, disability rights, and why such a finding is significant in the social and political spheres. Most of my research has touched on the problematic implications of an overwhelming emphasis on “cure” related to disability politics; is any discussion of cure, however, problematic? What line needs to be drawn?

I am realizing that the case of chronic illness is unique. Chronic, incurable, diseases, rather, do not fit into the broader political imaginary of disability. According to Susan Wendell in The Rejected Body, “those of us who have chronic illnesses and disabilities, and those who are dying of incurable illnesses, symbolize the failure of medicine and the Western scientific project to control nature” (Wendell 96). The effort to ‘cure’ illness and disease is inspiring; it is a project that motivates broad, bipartisan support. Everyone can agree on the plight to eradicate illness. Chronic disease, however, occupies an ambiguous position in politics; its very existence forces the government and society to reconcile the presence of permanent disability with the political landscape of the country – a country with a “culture of individual responsibility for illness and accident” (Wendell 106). Despite needing social barriers to be resolved, it is still conceivable for people who suffer from chronic illnesses to desire cures or treatments, as such research and medical advancement can dramatically increase their quality of life.

I think the key is that a balance must be struck between research on cures and research on social accessibility. In addition, I believe firmly that an overwhelming emphasis on a medical framing of illness, particularly with chronic illnesses, sends the political message that the world would be better off without disability in it. It ignores the political and social value of suffering, itself, and what the world can learn from those who must deal with the physical and social challenges of illness. In addition, people with chronic illnesses must be incorporated into the disability rights movement. At the time, the disability rights movement largely excludes their stories, as they serve as a reminder that some people with disabilities will still suffer, even if the social barriers to accessibility are resolved. In order to change the rhetoric around disability, the disability rights movement needs a more inclusive approach that incorporates the stories and needs of those with chronic diseases.

I am still developing ideas on the meaning of the government’s overwhelming emphasis on “cure” rhetoric associated with illness and disability. Hopefully, as I wrap up my research, I will get a clearer image on the significance of my findings!

Comments

  1. rssindelar says:

    Hi Kristen! Your research sounds so interesting. I took the Medical Sociology course here in the spring, and we did a little bit of reading and discussion about chronic illness and how it is framed medically and socially. We learned that people with chronic illnesses often do not get the same rights and accommodations as those who have more acute diseases, and may feel that they don’t get adequate support from physicians and employers when their condition does not have a clear solution. It is fascinating to hear about the political discourse that reinforces the need for a “cure,” thus further excluding those with chronic illness from the discourse surrounding disability in America. I look forward to seeing your poster and learning about the conclusions you draw from your research!