Fragments: Disability, Community, and Me

Wednesday, 25 February 2015 16:57

For the past several months I’ve been working on an essay about my fraught (for me) position in the disability community as a person with (undiagnosed) chronic illness and (diagnosed) mental health issues. I have placed “undiagnosed” and “diagnosed” within brackets because I do not like these words. They don’t work for me but because they carry such a heavy dual weight of medicalization and disability community identity I spend a lot of time worrying about them. I haven’t been able to finish more than fragmented paragraphs describing my disability experience—I guess this is because my understanding of it is also fragmented. My notes on this essay-in-progress are sentences and phrases that litter all of my electronic devices and have spilled into a notebook where I write by hand when I can no longer sit at my computer desk or hold my phone comfortably. I am unable to write that essay and so I am writing this one.

I’ve started and stopped the process of medicalization—the request for a diagnosis—for well over a decade. I have not always received the help I needed. After going through a long series of ill-informed, over worked, or simply misogynistic and lazy doctors, I gave up trying to seek a diagnosis when, six months after I completed my PhD, the doctor I was seeing refused to accommodate my request for a disability benefits application nor offer any other help than the advice, “hang in there.” After nearly five years of “hanging in there” (which I think I’ve done pretty damn well at considering everything) I am finally seeking a diagnosis again. It’s a slow process and I am not interested in rushing it. I do not expect there to be a diagnosis. I expect to be told that my physical problems are all in my head, of my own making. I expect to hear the words “less stress” and “more exercise.” And then I will do my best not to break down into tears at this dismissal of my knowledge of my own body and mind because to do so would prove them exactly right.

When we ask one another to declare ourselves we too often do so with the expectation that the other person will have the same words that we do. When it comes to my experience of myself as chronically ill, I have found time and again that this language of disability does not fit comfortably in my mouth or settle easily in my mind. At a moment of existential crisis a few months ago, I read Rosemarie Garland-Thomson’s “The Story of My Work: How I Became Disabled” and I was calmed. She writes: “When our embodied ways of being in the world come to be understood as disabilities or when we understand our way as disabled, we then enter the category.” Perhaps my own awareness is enough. While I see myself in the category of “disabled” as Garland-Thomson defines it, I know that for most people who see me, I do not fit their conception of disabled. I look “too well” (because when I’m not well, I am at home and no one, other than my partner, sees me). I often speak of disability in academic terms (because it’s the language that first taught me to understand my experience). I also don’t introduce myself—in person or online—by way of my health status. In fact, the more unwell I feel, the less I will mention it. While many people find community by disclosing their physical and mental disabilities and illnesses, this has not been the case for me until very recently. And the number of times I have found understanding and support are still outweighed by a life’s history of exclusion and isolation.

The truth of the matter is that I am scared and anxious a lot of time and I don’t know what to say. Part of this is due to brain chemistry and part of this is due to experience. I am still figuring out how to piece together all of the truths of my life, how to speak the right words, how to connect. I don’t have any finishing thoughts about my experience with chronic illness and the disability community. There are only partial revelations and contradictory understandings. I know that I need more people in my life than I have right now. I need to read more disability studies theory and science fiction books. I need to write more (in both creative and academic ways). Fragmentation and uncertainty are exhausting, and no matter how hard I try to make my peace with them, I need solid things right now. This post is an anchor.

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