Living Disabled in an Ableist Culture
You wouldn’t know to look at me that I am disabled. It was a long, rough, and savings-sucking fight to keep working. I remember my primary doctor at the time telling me, “People get uncomfortable around those in visible pain, so they want to distance themselves”, an explanation for how differently I was treated by colleagues once I couldn’t hide my RA. In my autoimmune support groups, I know this hiding of illness is common, as if we aren’t human beings. The rejection of self is a recipe for depression and worsening physical health. Even college students, who may be afforded accommodations, often hide their disability, or do not accept it as part of their identity. We teach children that disability is something to be overcome. The Arthritis Foundation puts non-average patients who’ve done something impressive, on the covers of their monthly publications. They all say the same-“Don’t give up! Push through! Find a stellar specialist and eat fresh and healthy”, not bad advice, but not acknowledging any fluctuations in disease activity that make them unable to perform. Instead, a low-to-no-symptom snapshot in time of a world-class millionaire golfer is meant to inspire the more than 50 million patients they serve. I translated it as ,”you just aren’t doing everything you can”, although for new patients they provide some common-sense advice and a sense of belonging.
Recently, I read on a Crip Theory thread, “I’m not sure I’m disabled enough to claim that term”. I admit, I’m not comfortable with the term, either, and grew up averting my eyes. This is the ableism inherent in our very genes, that unconsciously tells us we must suffer greatly, and with witnesses, in order to earn flexibility and acceptance. Crip theory applies to queerness, along with disability, the compulsory able-bodiedness an agent of capitalism sharing common features of compulsory heterosexuality. Some scholars are working with Crip theory to create spaces that support the success and wellness of different mind/body types. It isn’t hard to imagine an expansion of this concept, however practical considerations may not always allow for authorities to provide what we need.
Disabled people, and advocates, promote Crip world-making by dismantling beliefs and assumptions about our authenticity and grit, our talents and worthiness. It’s hard to take care of oneself when you feel unsupported, so I suggest starting by giving yourself a bit of flexibility first, like a rotisserie chicken or prepared salad shortcuts , or a week for writing a blog post. Giving myself what I need in terms of rest, meditative time, efforts to find good doctors and bodywork practitioners, fresh meals and gentle exercise, and slack on weeding the garden, it all signals my inner self that I am worth it. Learning to accept oneself after disability is a process. Therapy with the right person may help, as can meditation and energy healing, to release repeatedly the ableist messages racing through our minds every day; they’re just trying to figure out how to get us back in the tribe. That’s not our tribe, anymore. My tribe now is a motley mix of other warriors and spiritual folks, the two overlapping in a predictable way, my own little “crip world”.
We create these expansive spaces by throwing off normative definitions of what we are capable of creating, and showing up as ourselves in all our complexity, as uncomfortable as that sometimes is. One of my absolute best tools is a daily morning meditation practice, my touchstone before I cast off from shore daily in a sea of ableism that I (mostly) let float by me.