Update 2: Does the Government Perpetuate a Medical Model of Disability?

As I’ve continued conducting research these past few weeks, I’ve transitioned to investigating the ways disease foundations contribute to framing chronic and curable diseases through the medical model of disability. I’ve also looked more into how the government allocates funds for research by disease category and what those research projects are focused on. Together, this information has assisted in my understanding of whether the government perpetuates a medical model of disability through research funding.

In researching the relationship between chronic/curable illnesses and NIH research funds, I was immediately struck by the funding disparity between major chronic and curable illnesses. Curable diseases like breast cancer and prostate cancer get far more funding per disability adjusted life year than do chronic diseases like lupus and rheumatoid arthritis. This finding, alone, is not sufficient to demonstrate that the federal government supports the idea of “curing” illness over fitting chronic illness and disability into the American political landscape. With that in mind, I decided to determine the general focus of NIH research on each of these illnesses and analyze whether this focus ascribes more to supporting the medical or social model of disability.

Reading Wendell’s The Rejected Body this week has also helped me understand that it is not the absence of cure rhetoric that chronic illness framing should necessarily strive for – it is instead a balance of study of the social and medical effects of disability that should be investigated in government research. Understanding this, I started to read the abstracts and public health relevance statements for each of the projects funded by NIH per disease category to see what language they were using. I found that in 2016, 4 out of the 179 research projects on RA have to do with social and political questions about the disease, rather than medical ones. Lupus was higher, at 11 out of the 248 projects. I also calculated how many studies used the word “prevent,” “treat,” and “cure” in their abstracts/public health relevance statements that researchers submitted to NIH. For RA, 40% of projects mention “prevent*,” 57% mention “treat*,” and 4% mention “cure.” For lupus,  37% of projects mention “prevent*,” 74% mention “treat*,” and 2% mention “cure.” I’m still working on finding the data for prostate cancer and breast cancer; though, I suspect they are going to be similar percentages because I’ve already found that PC projects feature “prevent” 40% of the time and BC projects feature “prevent” 53% of the time. These statistics demonstrate that the government is focused heavily on the treatment and prevention of disability in its research, whether the disabilities are chronic or not. This empirical data displays an overwhelming superiority of “cure” rhetoric, demonstrating a political preference towards the reinforcement of medical model terminology when allocating research funds.

In investigating the influence of the medical model, and how the political framing of chronic illness has both affected and been affected by this “cure” narrative, I researched how disease foundations instruct constituents to advocate on behalf of its disabilities. I researched this for chronic – lupus and arthritis – and curable – breast cancer and prostate cancer – diseases. Many of these organizations have “advocacy toolkits” that reveal much of how they frame their advocacy campaigns. The Arthritis Foundation’s strategies ascribe most to a medical model, focusing on cure, treatment, and a return to “normalcy.” Their most recent campaign strikes me as especially problematic. It’s called “Let’s Get a Grip on Arthritis,” and it features images of young women with tag lines like – “Before arthritis, I used to love…” or “What if you have to watch your garden die because you can’t stand” or “Imagine you’re in so much pain you can’t dance.” They focus on that which an individual with arthritis cannot do and beckon a return to a socially-constructed idea of normality. In their advocacy toolkit, they have a sample letter they created from a “father to his congressman” about how the father wants legislation to cure arthritis to make his daughter “normal” again.

Lupus also uses a lot of medical model rhetoric with campaigns such as “end lupus now.” But, they also do a lot of social empowerment campaigns for women of color who have lupus. They seem to more effectively balance a focus on widening the gap between able-bodied and disabled (or depicting a story of victims) and a focus on closing that gap excessively (or depicting the ‘disabled-hero’).

Breast and prostate cancer, as expected, focused primarily on “curing” and “ending” the diseases. I am still working on finding more advocacy information about these diseases.

These findings have supported my hypothesis that the US government perpetuates a medical model of disability. This likely stems from rhetoric and framing that begins with charity foundations, who also recognize that a campaign to treat and cure disability is likely to garner broad support. What this says about how our society, and the government, view disability is troubling. Next, I’ll be exploring how these findings reflect on the social and political conception of illness and disability in the United States.