Diabetes and disability

Between my work, school, volunteering, and extracurricular and leisure activities I don’t get a lot of time to read diabetes publications, message boards, and blogs, and therefore I’m selective about what I read. One of my favourite online publications is diaTribe, which covers diabetes news and research relevant to people with both type 1 and type 2 diabetes. It’s an excellent magazine, and I encourage anyone interested in diabetes technology and developments to check it out.

In their most recent issue I came across an article by James Hirsch about whether or not type 1 diabetes should be considered a disability. And, while I agree wholeheartedly with his conclusion that it generally should not, something about the article rubbed me the wrong way. I couldn’t quite put my finger on what it was, but here I’d like to share some of my thoughts on why it may have struck a negative cord with me as I read it from the perspective as someone with type 1 diabetes, but also from the perspective as someone with a disability.

Having experienced both a chronic illness and a disability for the majority of my life I feel that the two are very different. Hirsch says that in a way diabetes is like having a disability, because both require that you take care of something every day. But this isn’t really true, at least in my experience. I think what makes a chronic illness different from a disability (and it’s interesting to note that, in his speculation of appropriate terms, “chronic illness” was never mentioned) is that with one a person must manage something internally—an aspect of how their body functions, while with the other someone must manage something externally—the way society thinks and functions.

There is, of course, some overlap. Chronic illnesses can, of course, lead to disability, as can happen with MS, diabetes, cancer, and many others. Chronic illnesses can also be temporarily disabling during an acute flare-up or crisis. On the other hand, a disability can be caused by a condition which requires ongoing medical treatment and thus has aspects similar to a chronic illness. But, by and large, the experience of living with a disability is very different from the experience of living with a chronic illness.

As a chronic illness, I have to manage diabetes day in and day out, on a 24/7 basis. But as long as I manage it well, and (if necessary) am given a few minor accommodations to enable me to do so, I can function regardless of the external environment. Diabetes, as with asthma and epilepsy and depression and a myriad of other chronic conditions requires me to pay intense attention to my body, to how I’m feeling, and to the environment around me to the extent that I may have to modify some aspect of my treatment to accommodate it. It requires that I manage daily treatments, doctor’s appointments, and symptoms. But, once these are done there is nothing about society that stops people with chronic illnesses from functioning at near-normal levels (I say “near-normal” simply because I don’t consider taking medication throughout the day, jabbing oneself with needles, being attached to medical equipment, or constantly having to think of one’s physiology “normal”).

On the other hand blindness, as a disability, has nothing to manage on a daily basis. The accommodations I use daily are rather static. Although I may have to perform ongoing tasks—scanning print books into a format I can use, or leaving the house with enough time to catch public transit and find my way to an unfamiliar location—there is nothing about my disability itself that I need to manage. Instead, I have to manage society and the environment, in that I need to constantly come up with adaptations to do things that other people are able to do without thinking, and then put in the extra work required to utilize these accommodations. Society is designed around the idea that people can see, or walk, or hear, or learn, or understand in generally the same way. When someone isn’t able to do one of these things due to a sensory, physical, learning, or cognitive disability, they become “disabled” because they are no longer able to function in society without significant adaptations.

Still, this pondering didn’t help me answer what it was about the article that made me uneasy. The one other major difference I could think of between most (but not all) chronic illness and most (but not all) disabilities is attitudes, both of the public at large and of people with disabilities themselves. In many, perhaps most, cases the public has an often subtle attitude that people with disabilities are less capable, even helpless. Someone with a chronic illness may encounter some trouble entering a few select careers, such as joining the army or being a pilot, but by and large the world is just as open to them as for someone with perfect health. Talk to many people who have disabilities—people who were told they could not become a teacher, a doctor, a scientist, a carpenter or raise children, travel abroad, live independently, or earn a university degree—and you would quickly realize how shockingly prevalent these attitudes can be. People with disabilities routinely get praised as “inspirational” or “amazing” for walking down the street without assistance, reading a book in braille, or holding down a job. If these average things are considered inspirational, what does that say about the overall societal expectations?

Once I began thinking of attitudes, it finally hit me. In the article I’m sure Hirsch did not mean to shed a negative light on people with disabilities. Who does? Yet, when I re-read the article I picked out the phrases which bothered me:

Still and all, I think we’ve made Garrett feel that his diabetes is not going to limit him in his life.

But Mrs. Graham also told him that just because you have diabetes shouldn’t prevent you from doing want you want in school or in your life.

The article concludes that diabetes is not a disability, and yet, the only difference it seems to point out between the two is that diabetes should not limit someone in what they can do in life. It’s not explicitly mentioned, but if this is the only thing that separates diabetes from disability, what does that imply for a disability? Perhaps it limits them physically—and perhaps this is what Hirsch was trying to get at—but I can’t help but wince at the thread of negativity that has crept into there. If diabetes is not a disability because it shouldn’t limit someone in their life, the completion of that statement means that disability, then, must limit someone in their life.

I would argue that’s not the case, at all. People with disabilities can do anything and everything——they just have to perform it in a different way. People with disabilities face limits because of the way society is structured. If we all relied on public transit instead of individual vehicles, there would be few transportation barriers. If all information were published in a universally accessible format such as electronic text, there would be no “print” disabilities. If all buildings and products were designed with the idea that there is no “one user” who is assumed to have complete use of all senses, limbs, and to all understand information presented in the same way, then there would be no inaccessibility. Inaccessibility, in addition to attitudes such as I mentioned above, are what make someone disabled. Diabetes and other chronic illnesses, despite the very formidable challenges they present, do not result in these same barriers.

I freely admit that this post comes from the perspective of only one person—me. I would be interested in hearing from others about their thoughts on this issue, especially people who live with a chronic illness and a disability concurrently. What do you feel the similarities and differences are, and where is that dividing line? Are the negative attitudes I find focused on people with disabilities also turned on those with chronic illness—it is possible that my blindness simply overshadows my diabetes in this regard, because it’s always the thing people notice, hear about, and comment on first.s