Why don't you just...?
Disability, accessibility, and judgement
Accessibility. There’s been a bit of a storm in a teacup this week, and I’d like to discuss it.
There’s a back and forth about whether using Doordash (a delivery service, in this instance for food) can be seen as an accessibility tool.
Specifically, there have been some reasonably vocal people talking about laziness and entitlement. “Why don’t you just cook?” is the common refrain.
It’s the kind of thing you hear a lot when you’ve got an invisible disability or difference: your arms work, your legs work. Why don’t you just…?
“Why don’t you just” is indicative of a lack of empathy, a lack of imagination. People can’t envision something different, therefore it mustn’t exist. They would only do this to be lazy, therefore you must be lazy.
In some ways, I get it. People ask me what it’s like to be autistic. I never know how to answer that question. It’s like asking a fish what water is like – I know nothing else.
But it doesn’t mean that I can’t try to wrap my head around what other people experience. Or believe them when they explain.
Criticising someone when you don't know their circumstances is such casual, unthinking, don't-care entitlement.
I really don’t understand how people are so quick to blame. Why they don’t think, before they condemn.
The Doordash discussion isn’t the first time I’ve seen this either. Years ago, I remember a kerfuffle about pre-portioned fruit and vegetables. It’s not something I use myself, but there are plenty of people who don’t have the fine motor coordination to manage raw ingredients. It’s not lazy, as so many people claimed, it’s a way to eat healthily and have some semblance of independence.
Hell, I suppose I have a version of this myself. I developed a neuromuscular condition in my teens (likely a lasting side effect from a medication I briefly took). When I write by hand (and engage in a limited number of fine motor tasks), my hands cramp. If I write more than a shopping list’s worth, it’s like someone is dragging a knife from my palm to my elbow. It’s excruciating (and my writing very quickly becomes illegible).
I remember the occasional comment about how “lucky” I was to use a computer in exams. Even rarer, I’d be told I just needed to try harder and that bad handwriting wasn’t a disability.
I don’t think people see us holding things together. The pain subsided in my mid teens, and recurred at one of the worst possible times. I was 17 and sitting my mocks: the set of exams before my final matriculating exams. I was hysterical, in pain, and knew that by stopping, I risked my entrance to university. All my teachers could do was bring me a box of tissues (I was sobbing as quietly as I could) and ice packs for my cramping hand.
I was lucky, people said later, to be able to type my exams. It's not really the kind of luck I’d wish on anyone. (Fortunately, my accommodation was approved relatively quickly, and has not been a problem since. I type everything.)
That kind of commentary has died down. I suspect, in part, because computer use has become so much more ubiquitous than 20-odd years ago.
And isn’t that a kick in the teeth: it’s alright for me to write in a way that doesn’t hurt me, because everyone else does it too. Not because I need it.
Let’s think about ‘the luxury’ of Doordash again. It’s a lot like the luxury of typing in my exams: it’s a work around for the struggles people have. I’ll use my autism to frame the use of Doordash.
It’s something I understand, even though I don’t do it myself. I’m extremely prone to overwhelm and burnout as an autistic person. (I think it’s easy to forget sometimes. I can’t speak for all disabilities, but as a neurodivergent person, I need to use significant cognitive resources to just exist in a world not built for someone like me. There’s less energy left in the tank to deal with ordinary things.)
I also have a strange relationship with food: I eat for comfort, I forget to eat, I forget what time it is. All of these things are known to be autistic traits. I suppose my weekly fruit box is an accommodation. Some days, fruit is all I eat, because I can do it while struggling, while thinking about something else. An apple is better than nothing, and usually a better life choice than chocolate.
And accommodations, people forget, aren’t about doing what’s best, about a long term strategy. Sometimes, particularly on your own, they’re about the thing that will get you through the day. Food is better than no food. Managing a difficult emotional patch is better than not managing. (The latter, more people might understand – using alcohol or drugs to unwind, even when it has knock on effects. I’ve been scolded for suggesting that getting drunk every work night is unhealthy: because it’s a coping mechanism that is more widely accepted. I’m sorry, it is unhealthy.)
When I’m completely overwhelmed, sometimes I go to bed hungry, because it takes the last of my energy to walk from my home office to my bed. For some people, ordering delivery is better than that.
When I say I’m overwhelmed, I don’t mean tired, I don’t mean fed up. I’m not necessarily in pain (unless I get a migraine at the same time). But it’s like my thoughts are crowded out. Imagine a white noise machine at an unbearably high volume. That’s what I have to fight through (it also happens to me when I’m in pain). This sluggishness applies to almost everything – work, taking care of myself, even going to the toilet. Finding myself food is a non-starter. On top of that, everything becomes a trigger. My neighbours upstairs, doors in the hallway. The most innocuous of things make me fall apart entirely.
When I’m in that state, I have to do whatever it takes to survive. For me, I go to bed. I’m sure some people might think of that as laziness, a luxury like Doordash. It’s not so. It’s an act of self-preservation. I am not safe to be around when I hit that state. I am not safe to myself when I hit that state. I cannot fend for myself, I cannot protect myself from myself. It takes my last ounce of strength to curl up in a ball, and wait for it to pass.
It's why these conversations around accommodations are so galling: why ‘why don’t you just’ is so insulting. So many disabled people are doing everything they possibly can to cope, or even to survive. I’d give anything to be able to avoid overwhelm; to be able to jot notes by hand without shooting pain up my arm. I can’t, so I adapt.
I know the stereotype of disability is that we’re supposed to be grateful. Grateful that tools exist, grateful that people accommodate or accept us. And yes, of course I know the social dance I have to play. It’s one of those things that wears down my cognitive resources: working out how I show gratitude in a way that will placate people around me. (This is different to when I’m truly grateful. That also happens, but it’s not guaranteed.)
I can play that game. Be who other people expect me to be. But most of the time, as a disabled person, what I am is tired. I’ve done all this work to get to the starting line. That’s fine, I take my lumps. But to be condescended to on top of that, the whole ‘why don’t you just’ – that really takes the cake.
If you haven’t read my post on my new enterprise (transferrable skills for education and employment, plus proofreading and editing), I’d encourage you to do so, and please pass it on to anyone you think might be interested.