By D’Arcee Neal
This is the first in a series of blogs 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.
A few weeks ago, I found myself in the backseat of an Uber at 1:30 in the morning coming back from, shall we say, a little nighttime fun with a guy I’d met online. I was in Sydney Australia for the first time, and I was trying to experience every piece of the land down under I could get my hands on, whether that was food, culture, music, or well, men. It wasn’t like this was a new experience. I’ve been in many an ubers coming from many an apartment late at night, but as I was coming home in the rain, when I struck up a conversation with the driver, I noticed there was indeed something different about the situation.
I’ll explain a bit. I’m a PhD Candidate in the last year of my studies where I’m working on theorizing how black people with disabilities can take the stigma we receive and use it to our benefit; learning how to recognize and weaponize diversity. As part of that, I was given a fellowship that pays me for a year to work on my research, and as such, I’ve decided to leave America for a while just to get a chance to focus on other things than…say, cops, brutality, black death, and Donald Trump. It’s been a nice change.
However, as part of my trip toward Copenhagen Denmark where I’ll be for a few months, I first came by way of Sydney Australia via a month long cruise where I met a lot of people on a really big boat…and didn’t see a single wheelchair user under the age of 50. That’s a common occurrence. And it’s a sad one, but I’ll get to that in a second. You see, in the back of this uber, as I was heading home, when I started talking with the driver, I realized that the conception of disability studies that we have in the United States is relatively unique…and progressive, even for countries that are relatively like our own. I discovered this as I was talking to the driver because he told me that he’d been diagnosed with polio as a child, and that being Arab and living in Australia, he didn’t know exactly what he was supposed to do. He started asking me things like where he could buy braces, or how much a wheelchair cost, and even asked he asked me, I realized that my answers couldn’t really help him because as he also discovered, our version of healthcare in America is completely limited by financial resources, in ways no other country on earth has to think about. He was telling me for example, that if he needed specialized braces, he could simply order them from an orthopedic specialist. Or if he needed medication, it was simply a matter of making the requisite appointment from the right doctor and going. Sounds nice, doesn’t it?
Aside from the fact that we don’t have universal healthcare in this country because of the continuing grandstanding of the Republican Party (or the fact that we were 2 days away from it passing with bipartisan support in the 1940’s, thanks 1619 Project for teaching me that) the driver reminded me that the concept of disability in a country with universal healthcare is wildly different from our own in that people simply just don’t have to think about such things. But I also realized something else. It robs them of their ability to fight, too. He told me that Australian disability advocates are mostly passive. Because people in the country believe the government will take care of them, it makes it much harder for anything to get done there because the answer is an evitable…yes…at some point. He told me that because he can’t afford to wait, he was forced into looking for employment where he works 2 and 3 jobs (like the Uber that he was driving that night) and that it makes him nervous because he has no idea what kind of life he’s going to have as a person with polio existing in a network of possibility tied to an unknown timeline. It made me think about the United States and about how everything we have here, we’ve earned through fighting. The ADA, and the amendments to include non-apparent disorders like HIV and obesity within it. The on-going fight for marriage equality and ability to increase dual income caps for married couples with disabilities to maintain their services. Hell, even the argument about ableism and the ability to use the maybe-sometimes-possible disability slur ‘spaz’ in Lizzo or Beyonce songs. All of it is a fight, and all of it is uniquely American.
He told me he was impressed that a wheelchair user could travel alone all the way to the edge of the world just because. I told him that he shouldn’t be impressed. In America, we’re guaranteed the right to our own standard of living and we fight to make sure we get what we want. Australia would later learn that, when two days later, I had to crawl up a giant flight of stone steps outside of an Outback Steakhouse in full view of the managerial staff and customers; but the issue remained the same. The way we operate in America isn’t always great, and it presents a ever-evolving system of challenges for those caught in the gears of the promise it suggests. However, it also gives us power and agency in challenging our own lives and the rights we want from them, and it’s a lesson that sometimes, I forget other people simply don’t have.