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An American Intermission: A Few Thoughts

By D’Arcee Neal, Agent of Change

This is the third #TheDisabledBlackMagellan blog by Agent of Change, D’Arcee Neal who is a fellow in ECNV’s Ford Foundation Disability Justice Initiative. Over the next year, D’Arcee will share his thoughts and experiences about disability and intersectionality with BIPOC, LGBTQIA+ and other marginalized identities.

This particular month, amidst the constant thread of PTSD and gaslighting that Denmark put me through, I find myself back on gold ole American soil. Listening to that uniquely homegrown blend of racist misogyny on Britney Griner’s return home, or to the imaginary wail of Christian conservatives over Starbucks Happy Holidays cups, I have to say: it’s good to be home if only for a respite. My travels will resume internationally next month but just because I find myself back in America, doesn’t mean that I don’t see the ways that disability and its global contexts continue to affect me. I spend my life as an educator, an activist, and a consultant advocating for the rights of racial disability so that others might experience a smoother, more equitable disabled life where they are, because they’ve heard or know better. But what happens when that disability strikes you in your own body?

That’s the question I found myself thinking about as I watched Celine Dion give her emotional testimony, diagnosed with Stiff Person’s Syndrome this month as she was forced to cancel her upcoming tour yet again. When a friend sent me the link, I found myself genuinely heartbroken for her, but not because I am a fan (the only Celine song I can tell you I know is from Titanic) or because I felt like she was milking the press for sympathy. Rather, my sadness came from my empathy both as a singer of 36 years myself and just the human perspective from watching the erosion of a livelihood in real time. In disability studies, we often have the inevitably pointless discussion of which would appear to be worse between an acquired disability or an inherent one. In Celine Dion’s case, neither mattered because the bottom line was, it was clear that she remains completely devastated. But I’d find myself more personally invested in this question not even a week later; when I developed a significant ear infection, which has drastically affected my hearing on one side, to date. Despite trying to rationalize everything I was doing and paying hundreds of dollars for specialists to examine my ear, I still remember panicking as I poured cap after cap of hydrogen peroxide into my left ear, feeling ashamed and alarmed at the same time. As a wheelchair user, I’ve already lost the ability to walk, and a major life function as a result of cerebral palsy. I’ve learned to overcome that. But I was still thinking, honestly, that I couldn’t have this happen too. To clarify, in no way am I disparaging hearing loss or Deaf communities and I see them as beautiful vibrant adaptations of communication that are perfectly fine the way they are. But I was wondering, am I still allowed to panic about this? As someone who studies and works in disability, how am I meant to confront the understanding that I may and will at someone point gain other disabilities? Where is the space for questioning or grief in the moment of acceptance that we fight for?

It’s a good question. Because so many people are quick to immediately discount the work of disability as lesser, I feel like we mainly still have to fight for step one. The world is still trying to wrap its head around the basic idea that people with disabilities are people first, and that no such idea makes you inherently worse off, but no we’re not that there yet. We’re not even close. If you need any more proof of that, see Brendan Fraiser’s newest film The Whale, which as the title suggests operates as both a dramatic and a morality tale wrapped in fat phobia. The echoes of such ideas from these types of movies then make their way into the general conscious, like it did when I had to talk to a Danish student who told me she didn’t understand the concept of disability pride. Apprehensively, she asked “if a person is sick, why is that something to celebrate? They haven’t returned a normal body yet. They’re not well, and so we shouldn’t be glorifying illness.” My response was simple. “I don’t take pride in having cerebral palsy. We don’t celebrate a cancerous mutation. And yet, do you want us to wait for that so-called return to normality before we recognize disabled people as people? Is not the contribution you make while sick, or inflicted, off-balance or disabled still worth it? That is the point. It’s what I do while having cerebral palsy that makes it a point of pride.”

It makes sense when you look at it holistically. And yet I could not see such an idea as the left side of my head was (and continues to be) filled with the static of a phantom television blaring next to my skull. Knowing that tinnitus can lead to permanent hearing loss, I wondered and continue to wonder what I should’ve done to prepare myself better, just as an advocate. Is it fair to exist within two bodies at once? Can I be a disabled person, afraid of the possibility of an unknown variable, and not ready to move toward the acceptance just as yet? I’m not sure. Additionally, I don’t know if the internet would even let me. As one of the equally complicated parts in disability activism, much like the confusion over a collective message, the ability to hold multiple views on disability and how it affects each and every person’s life is something that is unique and individual. I don’t profess to be any good at figuring it out. But I realized that I am still human. I can appreciate the beauty and power of Deaf culture while still being addicted to Spotify (and running Beyonce’s “Renaissance” over yet again for another round on my phone.) I enjoy the ability to hear sounds just as much as I appreciate the ability to learn ASL, but in truth, I also know this may not be enough.