I know, it’s the end of Disability Pride Month and I’m just now writing something about it.
That’s a really good observation about living with disabilities: I wanted to put together a post all month, but I only had the energy to tackle it now, at the end of it. My month was taken up with trying to get ready for an event that will be over in a couple of hours on the day that it happens, as well as a doctor appointment and doing all the things that I need to live. Oh, and a little time actually creating, which is one of the hardest things to both admit and live with. I would much rather that ratio be flipped, but it is what it is. I can’t make my body do more without paying a price that’s unsustainable.
And that’s the real crux of the issue with my personal experience as someone who has learned to claim the label “disabled”—I’ve had to accept that I can’t do the things that bring my life meaning nearly as much as I’d like, because so much of my energy needs to go to survival. Not the dramatic definition of survival, at least not currently, thankfully. I’m not in a hospital or fighting my body in huge disruptive ways at the moment. No, it’s more like the aspects of survival that are much more mundane. Keeping myself fed.Taking showers. Making sure I force myself to get some form of exercise. Going to the grocery store and laundromat. Boring everyday tasks that most people don’t think about much, but for me are huge energy sucks and can leave me exhausted and empty after attempting just one or two of them per day.
I don’t have to deal with a lack of accessibility very often, and my disability isn’t apparent to most people, so I don’t have the same experience of being disabled that some people do, at least at this point in my life. It’s important for me to not that “not right now” because one thing that abled people like to ignore is that disability is just one moment away from all of us. It’s a marginalized class that anyone can unexpectedly join, and it changes how you see the world once it happens. I’m more aware of failures in accessibility now, even when it doesn’t pertain to me. I understand more what it’s like to be dismissed because of disability, and how claiming the word is both freeing and being placed in a restrictive box. Just the fact that if I decided to marry my partner I’d lose my benefits–and what a shitty word “benefits” is in this framing—is demonstrative of that box, the restrictions that come with the tiny bit of begrudged help government aka society offers disabled folk. There are plenty more.
Being disabled is expensive. There’s always another test to be taken, a doctor visit, an assistive device, travel needed…the list goes on. And it steals your time, too. It takes me much longer to get normal things accomplished, like taking a shower and getting dressed. I have to stop and rest a lot. I lost a career to being disabled. I lost interaction with friends and colleagues because traveling long distances is still challenging for me, and being away from home requires a lot of acrobatics to manage. I still worry about things like “will I be able to find a bathroom?”
That last one…y’all don’t even know. I was talking with a friend who I haven’t seen in a while, and they brought up the idea of going on a walk in the woods like we used to do. I would love to do that; I miss it and their company on those kinds of walks. But you know what isn’t in the woods? Bathrooms. Do you know what aggravates my guts and makes me need to use a bathroom? Exercise.
I have some methods for reducing the possible need to go, but they’re not foolproof. I’m fucking tied to civilization, friends. A bear definitely shits in the woods, but I am no bear and I’d rather not.
This isn’t really about sharing all the fun details of my specific experience with disability, though. It’s meant to show that disability doesn’t always look the way that people often expect it to: disability is not a monolith, and neither are disabled people. Our experiences are going to vary and all of them are valid. In my case, it was a huge wake-up call to one day be living as an abled person [even though I was doing a lot of things to maintain the idea that I was “fine”] and then suddenly be disabled. There was an extended mourning period for the person I once was, and some struggle as I dealt with my own internalized ableism as it became clear that, yes, I very much am disabled and I needed to get over being hesitant to claim that label. As soon as I got over that reluctance, it was a lot easier to start asking for what I need and advocating for myself.
If there’s anything I want abled people to take away from this piece, it’s this: nothing is set in stone, especially health and abilities. If anything, it’s all ephemeral. You will do yourself a big favor if you accept this now, and put plans into place for the time in the future when you’re in need of assistance. Very few people make it through life without becoming disabled in some way. And if you’re currently feeling discomfort at this thought, I need you to sit down and take a good look at that. Internalized ableism shows up in ways that aren’t always easy to understand or spot as an abled person, and that’s not a criticism: it’s reality. We’re living in a society that already doesn’t plan for its disabled members unless forced to, one where disabled people are more likely to be talked about as either “burdens” or “inspirational” than fully deserving members of this society that deserve to have easy access to buildings, jobs with accommodations, and benefits that don’t make applicants jump through never-ending hoops and confine the recipient in punitive ways in order to continue receiving them.
Thank you for reading this all the way to the end. Much of the advances in protective and equalizing legislation in the US for disabled people happened shortly before and within my lifetime. Right now we’re in danger of losing much of that progress, in the US and elsewhere. Please consider talking to your political representatives, local organizations, and the disabled people in your life about how you can help.
