My disability is not defined by my moments of “ability”.

There’s this funny perception among abled people about how disability works; somehow, many have gotten it into their heads that if we ever do anything that looks like being able-bodied, it means we must be.
That if I can, say, run to catch the bus out at the mall, or jog across the street to avoid oncoming traffic, it means that I’m not actually disabled. Yes, my entire life is defined by the what, 30 seconds you saw me push through pain and fatigue to catch the bus or catch a friend because I didn’t want to be left behind or because it was the last bus of the day? That because you saw me walking around and playing Pokemon Go with my son one of the few times I get to see him (shared custody sucks) I am suddenly 100% able-bodied, my disability a lie made up for… I don’t know. Sympathy? To get my fiance to pay off my medical debts?
Well let me tell y’all, in case you were doubting: that is not the entirety of my existence. One Sunday afternoon ignoring pain, hiding how much my once-broken ankle aches and trying not to let my back spasms get the best of me, doesn’t negate the hours I spent after I got home recovering. My quick jaunt across the mall doesn’t negate that I sank onto a bench shortly after, trying not to cry because my hip slipped or because it feels like someone is jamming a hot nail through my heel and into my ankle. Just because you saw my fat ass walking 30mins to get to McDonald’s last week does not negate the time I sat in the restaurant sweaty faced and exhausted because fatigue is a bitch. It also doesn’t negate again, the time I spent recovering at home.
These occasional glimmers of “ability” — the tip of the iceberg of my experience — do not define my disability. Funnily enough, what defines being disabled isn’t the brief moments I can do something, but all the moments that I can’t. So you don’t see the days I can’t walk, you don’t see the days I spend crying on the couch because I can’t get up. You don’t see the nights I spend sleepless in bed because of aching joints. Hell, y’all don’t see when my brain forgets how to regulate my breathing and I have to stay up for hours until it remembers again because I’m scared I’m going to die.
And honestly — just because there are days when I can push through the pain, it doesn’t mean there aren’t days I can’t. But naturally, people don’t see those days because I don’t leave the house. I’m lucky if I can get to and from the fucking bathroom or get myself to eat a single meal on those days because the pain and fatigue makes me feel like I weigh a literal ton and gravity has decided that FOR THIS ONE TIME ONLY! it’s going to increase it’s hold on me specifically.
No one sees those moments except my fiance (sometimes a friend if I feel brave enough to ask for help). So they don’t enter the court of opinion. No what enters the court of opinion is “I saw Mouse run at the mall the other day so she can do it just fine.”. What enters the court of opinion is “Mouse is lying about her disability because I saw her do something the other day!”
Abled people don’t really have a nuanced view of disability — to them, disability is being uniformly unable to do things. If there are days I can’t leave the house, those should be every day or I’m not actually disabled. If I can ever do things like run or ride a bike or take a hike, I must be able to do these things every day. To abled folk, disability only ever looks like a paraplegic or someone who is otherwise unable to walk — ever. It looks like a blind woman or an old man with a walker and an oxygen tank. The media doesn’t show us the varied reality of disability, it doesn’t show a seemingly vibrant girl with a chronic illness or a young man whose joints dislocate at the blink of an eye… It doesn’t show people who can sometimes do things but can’t always.
Because abled people don’t want to see that. They want two things: the helpless cripple or the exceptional cripple. We must either be ~inspirational~ and “overcome” our disabilities in a way that makes them feel good about themselves (which also means they can then ignore our disability because “if you can go rock climbing then you can do anything!”) or we must be pitiable, in constant need of help and utterly incapable. There is no in-between because when people don’t want you to exist to begin with, they can’t acknowledge that you might GASP! have NUANCED experiences!
And don’t be mistaken: abled people really don’t want us to exist. Look at eugenics, look at the austerity measures taken to prevent us from being able to provide for ourselves or even survive — look no further than the erasure of our disability if we show even a moment’s competency which will be seized upon instantly to cast doubt upon the rest of our lives. We’re inconvenient — accommodations “annoying” or “special treatment”. We’re burdens, we’re “I’d rather die than live like you!”
So, they push us into boxes and ignore our existence as much as possible unless they can use us for inspiration porn or for a quick “good deed for the day”.
Nuanced experiences and our needs/abilities changing from day to day are just too complicated for most abled folks. It’s exhausting. It leads to my fiance having to field accusations related to my health and me questioning when/where/how I am allowed to do things, lest I face people questioning whether or not I’m really in pain at all. That I have to figure out how to perform my disability that people will believe me and stop throwing metaphorical stones at me all fucking day, spreading rumors, making up lies.
I don’t see an end in sight though, because people even acknowledging that they have bias against disabled people is rare — even among activists (I cried the other day when I pointed out that a fellow feminist’s examination of privilege left disabled people out and she didn’t dismiss me. I was elated when I was thanked for my input and she added an aside about the existence of disabled women. It was a rare experience. It was like, the clouds have cleared, angels sing hallelujah — someone listened!!! ). So I really can’t expect average Joe on the street (or family members or concerned acquaintances) to acknowledge it… People have trouble acknowledging nuance of any kind (a damning accusation from a borderline,I know!) So, how can I expect them to acknowledge the nuance of my situation?
tl;dr: Just because I can run sometimes, it doesn’t mean I can run all the time. Just because there are days I can push through the pain and appear normal, it doesn’t mean that I can do that EVERY DAY. Nor should I be expected to, for that matter. That I should be expected to just put up with constant pain because “well you can do it sometimes! You can do it so you can spend time with your son!” is absolutely absurd. My disability isn’t defined by the moments I can do something but by the long hours, days and weeks where I CAN’T. It’s defined by the fact that no matter what it is — I am in constant pain. All day, every day. Just because you occasionally see me do something that looks normal, it doesn’t mean I didn’t spend the rest of the day stuck in bed or on the couch just hoping I can get up to use the bathroom later.
