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I am currently taking my last formal class toward my PhD in Disability Studies. Yahoooo for milestones! The class is called Disability Oppression and Resistance. In class last week, my professor made an argument that clarified the question of disability as it relates to diabetes (though he wasn’t applying his argument directly to this).

He argued, “You don’t have to know you are disabled to be disabled, if society treats you as disabled then you are! Society chooses.” In other words, what determines your qualification as disabled does not depend on your willingness to identify, nor does it depend on the physical impairment you may have. Rather, it depends on how society treats you.

In the context of diabetes, then, I’m considering, how does society treat us? Based on my lived experience, constantly hearing things like “I could never do that,” and “you should not eat that, right?” leads me toward the conclusion that we are treated like we are different. And moreover, we are treated like we are different in the bad kind of way. And this reflection is not just individual. There are systemic ways we are treated differently. For example, I have over 2k in medical bills I’m slowly paying off because my body doesn’t function typically, because it needs more. We’re made to pay outrageous prices for medications without which we will literally die. This is oppressive. I’d love to take that 2 grand and travel to Europe. I have able-bodied friends doing that right now.

Based on my studies and deep dive into disability identity theories – reading about the marginalization and degradation of minority identity- leads me toward the conclusion that society treats us as Others (the capital O indicates a marginalized other). But, from what I’ve seen, our collective resists that. It’s complicated.

In the diabetes world, we reproduce a relatively sticky social contradiction. We fight for our right to accommodation at school and at work. We simultaneously fight to not be seen as limited by the condition. We want the benefits of association without the stigma we believe is attached to it. Can we have both? Or is this contradiction holding us back?

As I continue to develop my dissertation project, I’m curious about what we resist, how we resist it, and what we are trying to accomplish. What are we hoping for by spreading awareness messages? If we are fighting against being associated with the disability identity, what do we hope will come from others thinking we aren’t? If we are fighting against the diabetes stereotype, where do we direct our messages? What changes are we hoping to see?

If there are gatekeepers, who are they, where are they, and how do we get to them? When we lodge counter-arguments to the social construction of diabetes as the lazy person’s disease, who do we send them to?

I want to know so much more about the oppression we face and what we do to resist it. What do you think about this? What do you resist? What engages your cyberactivism? Where do you think we are headed from here if we continue to resist the ways we have been?

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4 thoughts on “On the question of disability… (again)

  1. Heather, I disagree with the professor. In the US and for a large part of the world, disability is defined by governmental budgets. Those budgets are defined by the degree of taxes that the population will sustain. This ultimately is decided by economic pressure, prior use of taxes, and priorities.

    What makes a PWD different than say a person with one leg? Political power? yes, Number? yes, Total Cost? of course, but mostly it is determined by one thing, it is the degree that the economic factors tax the overall system plus culture.

    So yes the professor is correct, it is what society says it is, but the reason it says yes or now is so multifaceted that econometric models woudl have to be built to discern even a small portion of the total.

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  2. Hi Rick! You’re absolutely right!! My professor argues that capitalism, the commodification of labor and goods, and governmental law are three of the biggest factors influencing the condition of disability! For me, the question is what is society? If we assume society or ‘the social’ is a collection of economic structures, cultural attitudes and norms, language and communications, and public and private institutions, then his argument stands as is and includes your argument within it. I think you two would have a fabulous dialogue. You both are wise people with a ton of advocacy experience! His book is called Nothing About Us Without Us. If you haven’t read it, take a gander. It’d be right up your alley!

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  3. Oh thanks Heather, I am looking for a good read, I will put it on my amazon list. My favorite book of all time (since I am a politician at heart) is Rules for Radicals. I do not know what your dissertation will be about, but I got a citation out of it for my dissertation about teacher hiring. Unfortunately my advisor scrapped my citation. Boo Hiss. LOL

    Good Luck Heather.

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  4. “If there are gatekeepers, who are they, where are they, and how do we get to them? When we lodge counter-arguments to the social construction of diabetes as the lazy person’s disease, who do we send them to?”

    In my experience, after having visited and presented at many different Universities within the United States, and after having spoken to many PhD professionals, it appears that the gatekeepers are found within, and begin, in college. They include some of the professors who teach undergraduate courses – those who determine who should and should not be offered an undergraduate research assistant position, or who should and should not be given a *strong* letter of recommendation for a particular field, career track, or graduate program. They also include some PhD mentors/advisers, some administrators, and in certain cases, some graduate students, who altogether determine who gets accepted into a program and/or who graduates, gets post-doc or post-grad recommendations, gets *strong* career advice, and gets published.

    From what I’ve heard (and learned the hard way) is this: In academia, and in certain professional fields, reputation is everything! Sadly, when certain fields, regions within our countries, or people hold strong biases against disabled persons, or even against certain conditions that aren’t defined as a “disability,” negative views from such professionals can systemically influence the actual gatekeepers’ decisions, as can U.S.-based PhD candidates/students, who often offer feedback to their mentors about the interviewees’ conduct while spending the night at their homes (some programs require that PhD applicants spend the night at graduate students’ homes as part of the interview/application process). Based on my conversations and observations about attitudes within the academy, it’s tricky to discern who the gatekeepers are from those academic professionals who are really there to support you, build you up, and prepare you for the dreams you desire to fulfill (as opposed to dreams that you’ve gotten excluded from due to biases, discrimination, and lack of opportunity post-gatekeeper’s covert rejections). In the U.S., education is often valued and required to upwardly mobilize, so it would make sense that gatekeepers are first met in academia (though they are not as overt about their positions, even if you ask them).

    I’m not really sure who the gatekeepers are in professional (non-academic) settings, however, but I’m sure they exist within companies and, broadly speaking, within certain fields. It would be interesting for you to write and publish a section just on the topic of gatekeepers alone, or to conduct an empirical study that points to the systemic issues related to gatekeepers. Perhaps business-industrial (industrial/organizational; I/O) psychology research might offer some assistance in those areas alone. Then again, if gatekeeping is so covert in their approaches, collecting data from them would be challenging.

    As to your final question within the quoted excerpt I mentioned at the beginning of my reply, I think that systemic problems are just that – systemic. Gatekeepers, alone, aren’t the only ones who will change how disabilities are viewed. Even anti-discrimination laws here in the U.S. do not always prevent discrimination from happening; the requirements to prove that discrimination occurred are too strict, yet many people within our country know this and openly get away with this through microaggressions and otherwise. Awareness is a great starting place, it doesn’t solve a problem in its entirety. Multiple areas for a given problem need to be addressed to multiple groups of people, in order to affect positive change for not only disabled persons, but also those who are vicariously affected by their struggles.

    Your questions and ideas are very thoughtful and interesting. I wish you best of luck on your dissertation! The world needs more research in these areas.

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