Asking for help is hard. A lot of shame can get wrapped up in it when people aren’t going to be able to “get better,” due to chronic illness, lack of access to medical care, or just a constant presence of health threats. People giving help want things to be over. They want to give you $20, or help you move apartments, or share your fundraiser on instagram, and then be done with it. When you have to consistently keep coming back to ask for more help, that’s when people’s aggression can come out. That’s when the questions about whether or not you’re faking it begin, when the unsolicited advice for fixing your disability and poverty begin, when the underlying theme from people becomes “you shouldn’t constantly need help, and you must be doing things wrong since you do.” And if you’re Black or brown, even though mutual aid is rooted in BIPOC care, you’ll be seen as even more of a threat for needing help.
When disabled people are visible and in need, many ableist undertones in society crop up. We’ve seen it with COVID, but it existed long before. Mia Mingus coined the term “abled supremacy” to refer to the culture of entitlement from able-bodied people, the expectation that they will always be able-bodied and that disability can never happen to them. It’s the very mistaken belief that when – not if – an abled person becomes disabled, they will have access to care and support, rather than be thrown into the Medical Industrial Complex, accumulate a violent amount of medical debt, be dismissed left and right by doctors, and likely get left to die. Ignoring disabled people’s lived experiences to naively believe our government will care about an abled person when they become disabled is a key component of abled supremacy, and it reinforces the challenge that disabled people constantly face of being taken seriously by their communities.
I’ve experienced something that I wasn’t expecting during my covid activism. For some reason, when I am invited to a space and I ask people to require masks, I feel obligated to stay in the space. The other day I was at an outdoor movie screening and started to develop a migraine. I didn’t want to leave because I knew the few people who were respectful enough to mask would stop, and anyone there who wasn’t as bold as me to ask for masks would be left unsafe. Navigating this line between taking care of myself and advocating for communal spaces to be safer has left so many disabled people in a position of feeling we have to perform and be constantly present in order to justify our need for safety. Why can’t we just protect each other without needing our arm twisted for it? In “The Future Is Disabled,” Leah Lakshmi Piepzna-Samarasinha talks about the struggle of asking for help and the way that sometimes it changes the dynamics of friendships. How can we show up for each other and not contribute to this cycle of shame? How can we unravel the knot of abled supremacy and break through to a place where we are actually providing care for each other, and ultimately ourselves?
covid chronicles 
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