Recently, I off-handily mentioned my disability. The person I was talking to, said without pausing, “Oh, please let me know what I can do to not be ablist.” First, awesome! No one has ever responded that way. Often there’s the pity. Or the doubt–my disability is invisible. Or the intrusive and kind of morbid in a can’t-stop-looking-at-the-car-accident way questions.
Second, I realized that I was at a loss to answer that question. Not because there was a problem with the question, but because no one has ever asked me that before.
I have an invisible physical disability. What does this mean?
First, I am in pain – all the time.
No, it doesn’t stop.
I think this is the hardest part for people to understand, at least people who don’t have chronic pain issues. Our brains are programmed to make us forget pain. That broken leg, yeah you cringe, but it’s distant – and I assume the memory lessens the reality of pain over time. So every second of every day, I hurt. The level of pain fluctuates based on what I’ve done in a day, how I’ve moved my body, and the weather.
Because my disability involves my dominant hand, wrist, and arm – everything I do requires thought and negotiation. Typing this post will up my pain level, not intolerably, but enough that I’ll rethink doing something else I want/need to do. I could be light-hearted and make a joke; haha, I guess that laundry will have to wait. Except that laundry has to get done. I have to have clothes to wear. The dishes have to get washed, the house cleaned – I’m lucky in that I have partner who does a lot of these things for me. You may or may not be familiar with the “Spoon Theory” – if you are not, check it out. That’s my life, too.
There are days where I am so deficient in spoons, that doing anything more than crawling into bed is impossible. I’ve learned to manage better, and I give up more to avoid those days. I rarely play video games anymore, and if I do, it is for very controlled amounts of time. When I write (typing), again it is for controlled amounts of time. I have about 20 minutes at either of those things – then I have to stop. Most tasks that require fine-motor skills for any length of time are out. I know that’s why I take such pride in my club makeup – it is one of the last, visually artistic things I can do (little known fact, I used to love to draw). Ask Mick sometime how long it takes me to do the makeup, it’s not fast. And there are a lot of breaks. So what happens if I just “suck it up” and “push through the pain?” Well, this pain doesn’t work as a traveling companion. It actively works against me, and the longer I use my arm/ wrist/hand the more the pain increases in severity. Added bonus: If I overdo it, eventually my hand will have had enough and simply stop working.
My right wrist and hand have “limited range of motion” – that’s the official doctor speak for it. But what does that look like? I cannot lift more than about 8 pounds with my right hand – I’ve managed 10, but only if I’m carrying it (arm hanging down). I cannot place my hand flat on the ground and bend my wrist – think yoga, or the way most people brace themselves and push up to getting up from sitting on the floor, or resting your head in your hands (elbows on the table). There are a million other motions that I simply cannot do or will cause me significant pain. This also translates into routine problems with my arm, shoulder, and back. If I’m not hyper-vigilant, I’ll hold my right side in such a way that it causes strain and aggravation to my right side. Even how I am sitting or sleeping can be a problem.
I have a limited grip, so my hand spontaneously stops working. It’s why I drop things, a lot. Which always sucks and makes me feel klutzy and foolish – and no, you cannot explain to everyone you have a disability – and more so, most people default to pity, horrible (I’d rather die than live without…), or doubt. Even broken, it’s still my dominate hand, and for most things I still default to it. The next issues, my fingers lock up – which is why I rarely write by hand/with a pen anymore. My handwriting wasn’t great before my accident, it’s nigh illegible now. I use a mouse left-handed as often as possible because I often lack the fine-motor skills with my right hand. I have to be careful about bending my wrist – which includes stuff like opening doors, holding a handrail, ok holding anything – but stuff like holding a book to read is a limited motion for me – yes, books literally cause me pain – as does my tablet or Kindle if I’m not careful. Oh and driving… How can I forget driving? I don’t just dislike it because it’s driving. I dislike driving because it often hurts – a lot.
So what can anyone do to not be abilist? I honestly have no idea. For me, simply understand that when I say “I can’t or don’t do that” physical thing, it is not an invitation to try and persuade me to do it, to tell me “just try, I’m sure you can do it.” I know what my limits are, you don’t. Understand that I am reticent to talk about my disability for a lot of reasons. I may or may not be interested in sharing the details of my disability with you, but if I want to tell you about it, I will. I don’t want to hear about your folk remedies, medications that worked for your aunt/cousin/coworker, or other tips. Unless you have chronic pain issues and/or a physical disability, your “good intentions” all too often feel infantilizing. Do you really think I haven’t tried everything, even the ridiculous stuff? And never tell me how I’m “inspiring” or how my “struggle motivates you” – Um really, there’s no nice way to say this, but fuck you. My pain isn’t yours to use. My life isn’t an insipid made for TV movie where I cease to be an actual person and become a symbol for how much “worse” your life could be.
For those of you following along – it took me two sittings to type up the first draft of this. I also had to do laundry and some light cleaning today. And I really, really want to get to play one of my new video games today. I’ll have to take a few hours, yes three or four hours, and not use my hand. Maybe, a game will be an option later today, maybe.