Towards reclaiming my birthright, part 2: divest from cure, control, & contain

[In the first installment of this series, I talked about my politics in general and how the connections between systems of oppression and my personal experience have become incredibly salient to me. Here I want to talk about how that awakening impacted my attitude towards my various disabilities and how I navigate the world with them.]

I’ve experienced the world in the way I do for as long as I can remember, but it wasn’t until I was fourteen that I was officially diagnosed with depression and later bipolar disorder (along with assorted goodies like dissociative identity disorder and panic disorder and PTSD and and and). I’m off psychiatric medication, and for the most part I don’t find my panoply of diagnoses useful anymore, but they were a part of my journey at one point.

It was also around this time–maybe a little before, maybe a little after, my memory of my childhood is hazy–that I was diagnosed with two other disabling conditions: irritable bowel syndrome and fibromyalgia. I’ve had digestive struggles since I was very young. I can recall missing a lot of school due to stomachaches that were almost certainly a result of internalized stress and trauma. The fibromyalgia did not manifest itself until I was in my teens, but it came on strong when it did. I needed to use a cane to walk for a long time. (Along with all this, I had extremely debilitating menstrual pain that seemed to take up a majority of the month, I developed PCOS as a consequence of being treated with valproic acid during puberty, and I had various other issues crop up–like sleep disorders and RLS–due to the psych meds.)

My teenage years were mental and physical hell, some of it a byproduct of my not possessing the framework to understand the societal underpinnings of why I was experiencing the things I was, some of it a direct result of my divergent mind and body. I was taught to blame my hellish existence solely on my mind and body. The treatments I was given focused on correcting supposed imbalances in my brain or building tolerance in my body to things I felt I shouldn’t have to tolerate. I eventually got balanced enough or good enough at pushing past the pain that I could get off disability and get a job and tolerate injustice for a paycheck. And I thought I was as close to cured as I could possibly be; I was approximating normal, at least.

When my life fell apart and I along with it, I again sought cure. I thought psychiatric medication was the reason for all my disability, and if I could just get that out of my system, cleanse my system with enough detox and healthy living, I wouldn’t be in constant pain, wouldn’t feel like I needed to curl up in bed after a couple hours awake, wouldn’t feel every single worry in my muscles and joints or every single piece of food pass through my digestive tract.

(That wasn’t the case, either. I’m still very much in pain, very much beholden to my body’s need to eliminate fully every morning before I’m able to comfortably start my day, and very much inhibited by overwhelming fatigue on most days.)

Here’s the thing: until 2017 or so, I’m pretty sure I saw my disability as something I could overcome. Much like all the other characteristics I talked about–my race, my gender, my body size–I saw my disability as something conquerable if I was just exceptional enough. I’m not saying I would have ever verbalized this, and I certainly didn’t think it about other folks. But internalization runs deep, is insidious. Uprooting hegemonic thought patterns takes a lifetime, because they are forever changing and adapting as you change and adapt.

It took withdrawing from psych meds and confronting the continual presence of my disabilities to force me to reckon with their permanence. This reckoning is ongoing. I still sometimes find myself looking back at some mythical time before I became disabled, or looking forward to a time when I might be some shade of healthy, that is to say, less sick. And when I envision me as my best self, too often it’s a vision of myself being productive and able-bodied enough to perform activities like running or cleaning my entire house. The goal is to get to a place where my best self isn’t molded by ableist values. I want to make plans for the future that don’t center on the pain abating or my moods stabilizing.

I’ve realized that up until recently, I was attempting to do one of three things to my disabilities: cure, control, or contain. When cure seemed out of the question, I sought containment through rebellion and self-destruction or control through meds and adopting abled culture; when containment and control became untenable, I set my sights on cure through withdrawing from psych meds and convincing myself my disability was an artifact of their effects. Cure, control, contain is the model for cancer treatment, deadly and alien as we know it, and I knew my disabilities similarly. I hadn’t considered that they were inseparable parts of me, and might have something to offer other than suffering and eventual death.

That these parts of me are disfavored by white supremacist imperialist capitalist patriarchy is not a reflection of their true worth. The parts of me that achieve academically or generate income or do sports aren’t better than the parts of me that were too depressed to finish an assignment on time or that were on SSI or that couldn’t walk without a cane. I don’t need to isolate and berate the so-called deficient parts of me to protect the virtuous parts. All together they make me who I am, and I am glorious because of my disability, not in spite of it.

Now I have the language, the frame through which to extricate the struggles I experience due to ableism and the struggles I experience due to physical or psychological pain. I no longer look at my mind and body as something to be overcome. I’m learning to interact with my bodymindsoul in a tender way, to listen and consider and ask for consent, and not to judge or reprimand when I can’t perform in some way that ableist society has demanded. I’m lowering my expectations, because I wasn’t put on this earth to be productive, and I don’t see the point in playing along. What society has to offer me in exchange for breaking myself at its feet isn’t worth the blood spilled.

My disabilities are foundational to how I navigate the world. Having limited energy shapes my view of what is truly necessary to spend one’s time on, and thus dictates my priorities–growing love and nourishing spirit. My mental illnesses have shaped my understanding of the nature of reality: the relative abundance of sorrow and the rarity of true joy, and how important it is to protect the latter when it crops up. If it weren’t for these supposed impediments, I would likely have spent my life pursuing goals set for me by society rather than building a life guided by transformative love principles and seeking pleasure.

I truly believe my disabilities have something to teach me about how to live wholly in this world, something precious. I need only agree to stop trying to fit them in an ableist box, stop trying to make them small or acceptable or part of an inspirational narrative of overcoming that ties up neat in a bow with me as the cured crazy person at the end.

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