I’ve recently had to start thinking about what it means to be disabled. For some people it’s just a word, for others it’s an identity, or a form to fill out, a box to check or not check, a joke, a slur, a life shattering diagnosis. If you’ve never known anything different, life just goes on as usual. But the hardest part is when someone knows what they’ve lost because they used to have it.
I’m a list of scary acronyms, but I’m more than that. Each and every one of us is fighting a battle that a stranger on the street knows nothing about.
Last summer I was at an inside trampoline park with some friends. Everything was fine until I finished all the cool tricks and flips and just started bouncing. It felt like my knee went one direction and my body went another. It hurt, but I assumed that it would go away as long as I stayed off of it for a while, like every other injury. Unfortunately, it didn’t, and I ended up on and off of crutches for about 9 months. Part of the problem was that it didn’t feel terrifying enough to go to the hospital, but I couldn’t go anywhere else because my insurance didn’t cover anything in the state I go to school in. Dealing with the crutches meant that all of a sudden I couldn’t do things like open doors for myself, or move chairs. I started to notice things that said “accessible” or “disabled.” My biggest issue was that things claimed to be accessible and really weren’t, like a bathroom with an automatic push door on the outside and a pull side complete with handle on the other. I couldn’t even get out of a bathroom!? Unfortunately, we haven’t gotten around to thinking about our differently abled brothers and sisters (and siblings) yet. We’re too busy trying to fight racism (again) to change anything else…
I’d been getting progressively more depressed for the past year and a half. Then suddenly, last summer I started having bursts of random energy. There didn’t seem to be any pattern to the bursts, but when they hit I had to do something; I had to do something specific. It was scary. I would wake up at 2 in the morning and do homework for 3 hours before collapsing back into bed and sleeping soundly as though nothing had happened. There were weekends where all could do was paint. It made college even harder. All I wanted was for it all to just stop. I just wanted to feel normal. What I found out was that my idea of normal is probably not ever going to be accessible to me again. I’m not going to share the diagnosis because I don’t want to be defined by it. Part of me was relieved, because knowing what’s wrong means that you can treat it. But another part of me, the more hidden part started to worry about what it all meant. I changed medications, and seem to be doing a lot better.
The other part to this story is about OCD. Or, mine that is. When we see OCD portrayed in the media we think of obsessive cleaning, of order and discipline, or maybe hoarding (which is the opposite of all that). But, what it really all comes down to is fear. The same way that our white blood cells sometimes get confused and attack important, healthy things in our bodies, our brains sometimes catalogue information as scary. I don’t know why, but things in color order feel safe to me. I like rainbows because the organization makes me feel safe. However, this isn’t something that I deal with all the time. Generally speaking, color organization only comes up when I’m particularly anxious and/ or stress. (So it makes sense that it’s come up a lot more in the past yearish). I get anxious when I’m not on time. I like to be early, but to an extreme. Growing up my family could never figure out why I would freak out when we were late, and why I couldn’t “just let it go” or “stop worrying about it.” I didn’t want to be anxious, but somewhere along the way my brain just decided that tardiness was a terrible enemy to be avoided at all costs.
But here’s the thing. I don’t want to share some of these things. When you apply form a job and there’s an optional checkbox for depression, or a place to talk about disability—who wants to fill that out? People who can’t hide whatever people say is wrong with them have no choice. My generation is more accepting of mental illness (a term I don’t love), but our employers are from a different generation. The last boss I had didn’t understand the term “mental health day,” and that meant that it was hard to be honest about things that were going on, both internally and within my team.
We have to find a way to change the stigma surrounding things like this. Maybe that starts with changing the common terminology from phrases like “mental illness” and “disability.” Maybe we have to start by cleansing words like “bipolar” and “depressed” from our vocabulary unless they actually apply. The truth is that we can put a band aid over some of the problem by putting people first. Literally; “person with chronic pain,” “person in a wheelchair.” When these things don’t feel like they apply to you, they’re easy to gloss over or ignore. The truth is that they matter, though. They matter a hell of a lot.
Everyday Acts of Activism