Overcoming Shame, Voicing Pain and Asking For Help
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“How can I help?”
Two years ago, I stood alone in the stationary aisle at Walmart, unable to see, waiting patiently for my vision to clear up. This wasn’t the first time it had happened, but it was the first time it happened in public. These episodes of blindness only lasted at most a quarter of a minute, but the debilitating anxiety, the chronic head, back and neck pain, lasted far longer. It took me a while to speak to doctors about how I was feeling, but after stern warnings from my closest friends, I ended up in the emergency room at Sunnybrook about a week later. Navigating this new diagnosis was challenging, but that wasn’t what stopped me from talking about the pain I was in. Childhood emotional neglect, which I now understand, was due to poverty, manifests in the most excruciating ways as you get older. For me, it showed up as me consistently avoiding any and every opportunity to express the pain I was in…the pain I am in. The pandemic, however, highlighted the interconnectedness of disability justice, forcing me to voice that pain.
In March, certain workplaces had turned completely remote, even those who once refused their employees’ requests to work from home due to accessibility needs. Although there were conversations around how the pandemic had made things accessible for folks, I still felt something was missing. Even in the middle of a pandemic, who is awarded the option to work from home? Meanwhile, essential workers, many of whom are from poor working-class racialized communities, were still expected to show up to work. As Mia Mingus reminds us, “Disability is not monolithic. Ableism plays out very differently for wheelchair users, deaf people or people who have mental, psychiatric and cognitive disabilities. None of these are mutually exclusive, and are all complicated by race, class, gender, immigration, sexuality, welfare status, incarceration, age and geographic location.” While the pandemic exposed the depth of capitalist exploitation, it wasn’t a revelation at all for many of us. Over the last couple of years, I contemplated my worth in a world that measured people based on their ability to generate (and access to) economic, social and cultural capital.
“Over the last couple of years, I contemplated my worth in a world that measured people based on their ability to generate (and access) economic, social and cultural capital.”
In her book, Care Work: Dreaming Disability Justice, Leah Lakshmi Piepzna-Samarasinha writes, “If I’m having a pain day and a hard time processing language and I need you to use accessible language, with shorter words and easiness about repeating if I don’t follow, and you do, that’s love. And that’s solidarity.” Reading Care Work helped put into perspective how even “accessibility checklists” can feel empty when the spaces we are in are not committed to confronting all systems of oppression. And other times, accessibility feels like the last thing on the overall event checklist, if it makes it on there at all. “Going deeper than basic access in our disability justice revolution as Black, Indigenous, and brown people isn’t simple. It means unpacking our deep histories of scarcity and shame,” writes Piepzna-Samarasinha. I learned that unpacking this shame and the waves of grief that come with it isn’t something that I could achieve independently. I needed help.
When I am in pain and cannot see, what does radical love feel like? Answer: a non-judgemental, “how can I help?” Although it may not seem like much, this question has gotten me through the worst of days. Establishing an ongoing conversation around my access needs with my friends, family, and partners was something I had trouble doing first. However, with time, building trust is the most radical form of love I have ever experienced. On her blog dedicated to Transformative Justice, Mia Mingus writes, “With disability justice, we want to move away from the “myth of independence,” that everyone can and should be able to do everything on their own. I am not fighting for independence, as much of the disability rights movement rallies behind. I am fighting for an interdependence that embraces need and tells the truth: no one does it on their own, and the myth of independence is just that, a myth.”
“When I am in pain and cannot see, what does radical love feel like? Answer: a non-judgemental, “how can I help?”
Among revelations made apparent by the pandemic, this myth is something that I have personally thought about repeatedly over the year. Fighting shame by asking for help paired with the understanding that no one does it alone is an important lesson I take into the new year. In 2021, I am unapologetically asking for help when I need it and simultaneously asking, “how can I help?”
