It sucks to admit that I only started investigating my own ableism once I was no longer able but that's the truth. Coming to terms with a body changing abruptly and against one's will is a harrowing experience but one many of us share. Even though we may not be vocal about it. I’m learning that many of us move through the world with a disability but refuse to name it. Pain is an island.
Leah Lakshmi Piepzna-Samarasinha's Care Work, which I consumed in audiobook format this month, validated an experience I've been unsuccessfully attempting to camouflage under a thick slab of shame. The world isn't kind to disabled folks. As part of the settler colonial apparatus, disabled individuals have long been seen as something ugly and other, oftentimes being segregated from "normal people", oftentimes discarded and left to die. Disabled folks aren't productive under racial heteronormative capitalism in the ways most people are expected to be. I know this deeply. I’ve been out of work for a year and this is the second time in my life that work makes me sick. Quitting a taxing job is soothing, but there's a substantial amount of shame both internal and external that comes with it. Our humanity is inextricably linked to our ability to produce. Even if I don't believe this, there are parts of my body that do.
Care Work delves deeply into the many aspects of Disability Justice and speaks to ingrained systems of ableism. Leah Lakshmi Piepzna-Samarasinha talks about care webs and dreaming ways of moving with our communities and allies in ways that account for different types of disabilities and madness. She speaks about how isolating the experience of being disabled is, as we are often left behind by non-disabled folks preoccupied with not being slowed down, not wanting to miss out on things the disabled and chronically ill are forced to forsake out of need and often survival. She talks about how anger and frustration rightfully inhabit our bodyminds, as the toll of our diseases is often compounded with generous sprinklings of anxiety/depression as well as financial precarity. The combination of financial, physical, emotional and mental distress is a load we don’t have the luxury of ever separating ourselves from, a load that's rarely alleviated by states that look at disability as a binary in which we're either completely able or disabled.
Ableism again insists on either the super crip - able to keep up with able bodied club spaces, meetings and jobs with little or no access needs - or the pathetic cripple.
- Leah Lakshmi Piepzna-Samarasinha in Care Work
I recently looked into what the Canadian government offers as financial support for people living with disabilities. After a couple of redirects, I was on a 14-page downloadable PDF, most of which is to be filled out by a treating doctor. The document is overwhelming and glosses over the fact that many of us don’t have visible disabilities or a single treating doctor. Since August of last year, I’ve consulted a dozen healthcare practitioners. A couple of GPs, an orthopaedic surgeon, an internal medicine specialist, an osteopath, a chiropractor, a podiatrist, a neurologist, a physiotherapist, a number of nurses and even a pranic healer. All have given me different diagnoses, bits and pieces of information that put together partially explain what’s going on. None of them have given me a holistic overview and none of them can account for my all of symptoms. This also doesn’t factor the fluctuations I experience, the bad mental health weeks that lead to flare-ups, the lack of executive function that means I don’t take my vitamins religiously enough, the people around me who mean well but bruise me further.
"Some of us are in the in between of needing some care but not fitting into the state model of either total and permanent disability or fit and ready to work so we can't access the services that are there."
Leah Lakshmi Piepzna-Samarasinha in Care Work
It is rarely helpful to tell a chronically ill person to get better soon because, how? Yes, I would love that, but at the end of the day, I have little control over it. I picked up Alice Wong’s Disability Justice this month, and in her essay I'm Tired Of Chasing a Cure, Liz Moore nails the agonizing, life-extracting feeling of yo-yoing between acceptance and hope. The ubiquitous cure stance might seem like an obvious one, especially to non-disabled folks who see fit-enough-to-work as the only viable end goal, but it’s exhausting to chase after a feeling that might not exist.
Care Work has given me the language to articulate some of what my body already knew and validated the bad mental health days, the frustration and suicide ideation that comes with being chronically ill in a productivity-driven world. I’m slowly coming to terms with what my body can and can no longer do and embracing the new body of wisdom that my slow bodymind now possesses. I want to feel good and be in as little pain as possible, but that is not all I want. I want to allow myself to dream and desire and unlearn shame. I want more than anything to not live like something broken in need of fixing.
We will always exist, one day, the non-disabled will become disabled and they will rely on our collective disabled knowledges for their continued survival.
- Shayda Kafai in Crip Kinship
Adding Care Work to my reading list! Btw have you considered functional medicine? Supposed to look at the overall picture rather than the individual diagnoses from various specialties. I’ve heard good things about it but it’s ridiculously expensive here in the US because it’s not covered by insurance. Getting the right diagnosis is often a battle on its own. Hope you find some answers soon 💜