Ableism sucks

Ableism.

It’s not a made-up word. It’s not just internet slang either. It’s a valid word, found in the dictionary.

“discrimination or prejudice against individuals with disabilities”

Merriam Webster Dictionary

“unfair treatment of people because they have a disability (= an illness, injury, or condition that makes it difficult for them to do things that other people do)”

Cambridge dictionary

Most of the time, ableism is not intentional – and that makes it even worse. Because how can you be angry or upset with someone who is just trying to be helpful or kind or… well, basically anything but offensive. That just doesn’t seem to be fair, does it?

And so we quietly accept the unintentional abuse rather than speak out against this unfair treatment. Because somehow that is fair? Does that make sense?

Of course not!

Some disabled people seem to be really good at coming back with a quip that puts the other person in their place. I envy them for that gift.

Sure, I think of those witty remarks too – at least 24 hours after the fact. That may or may not have something to do with my autism. Fact is, I’m often at a loss for words. That’s why I love writing. I can take all the time I need and go back to fix mistakes as often as I want.

And so I’m writing about the ableism I’m confronted with on a shockingly regular basis. And, sadly, most often by the people I call friends. Like I said, they don’t mean to be ableist. Usually they really are trying to be friendly, helpful or uplifting. How can I blame them for trying to be a good friend?

“There’s no way you’re autistic, and besides, why would you want that label anyway?”

Yes, weird, eh? Why indeed would I want that label if I were not really autistic? I honestly can think of no logical reason why, so that leaves the other option: that I really am autistic.

Though meant well, this hurts me in so many ways. It makes light of the challenges I have to deal with on a daily basis in a world that is tailored to the needs of neurotypicals – or ordinary humans, as I like to call them.

It makes light of my severe social challenges. Yes, I know they’re invisible to most, but that’s only because of the mask I wear. A mask I shaped over many, many years to look like the person you know and love. It’s a far cry from the real me. The child, the adolescent and young adult that got bullied mercilessly and relentlessly, for no other reason than being different.

Odd. Clueless. Socially inapt.

You may think I’m “normal” (whatever that means), because I learnt to look people in the eye no matter how disconcerting. Because I have a vast library of scripts – borrowed from both real humans and fictitious characters – to use in social situations. Because I have learnt to differentiate between literal and figurative speech. Because I have developed a wicked sense of humor which makes people assume I’m being funny when I accidentally slip up – and I know better than to disagree.

Claiming I’m not autistic makes light of my sensory issues, which are many and can be utterly disabling. It makes light of my need for routines and sameness. It makes light of my meltdowns and shutdowns, which are worse than anything I would ever wish on anyone.

So don’t. Just don’t.

Don’t tell me I’m not autistic. Because you have no idea. Not unless you’re an autism expert whose knowledge about autism is up to date, and you’ve assessed me yourself according to the DSM-V criteria.

“I fully understand. Crowds make me nervous too” or, “I hate loud noises too” or, “I don’t like watching TV much either.”

Sorry, but no. Unless you’re autistic, you have no idea what it’s like.

Crowds do not make me nervous. They are overwhelming. (And three is a crowd.) There are so many people, there’s so much noise, so many smells. There’s unintentional touching, there’s the small talk. There’s so much going on at once, I can’t focus on anything and am floundering, trying my hardest to keep it all together and to not end up having a public shutdown.

And don’t be mistaken. The shutdown will happen, and short of not going anywhere where there’s more than three or four people, there’s nothing I can do to prevent that. It may only last a couple of minutes, but it can easily last for hours, and may occasionally last several days.

Loud noises are not just annoying. They are upsetting. They cause instant sensory overload and again, may result in a shutdown. Or a meltdown, which is even more embarrassing.

You may not like watching TV very much. To me, watching TV means having to deal with so much sensory input I don’t know how to keep up with it all. There’s the (often flashing) light, the movement, the noises, the story, the social interactions, all the nuances I have trouble distinguishing.

And that’s only the stuff that’s happening on TV, and we haven’t even touched upon all that’s going on in the room where I would be watching TV. With people talking, eating, drinking, and all the sounds, smells, and other impressions that come with being in the same room with other people.

I cannot do it.

Not unless I want to risk (you guessed it!) a full-blown shutdown or meltdown.

“There’s no need for anyone to eat animal food.”

This one really gets my hackles up.

I want to eat a completely vegan diet. And I did so. Not for just a week or a month, but for years. And it resulted in me losing weight that I could not afford to lose and developing deficiencies. Why? Because, clearly, I cannot survive on plant-food alone.

Why is it, that all those militant vegans insist on proselytising and preaching their truth as the only truth? It may be true for them, and I am sympathetic to their cause, but it’s definitely not true for everyone.

Some people’s digestive systems have trouble digesting plant food, or have physically adapted to subsisting on a diet that consist of mainly meat and fish – like the Inuit, who because of their geological location, could not grow crops.

Then there’s those, like me, who probably could do well on a vegan diet if they were able to eat enough of it to provide them with all the nourishment they need.

I am incapable of eating enough plants to sustain a healthy weight and to provide my body with all the nutrients it needs. Part of that is due to my NCGI, part has to do with the extreme fatigue the EDS brings with it, and a large part of it is due to my autism and sensory issues with a lot of food.

There is no one size fits all.

Pretending otherwise is cruel and endangers the health – and lives – of those who have a real need to incorporate food from animal sources in their diets.

“Maybe you should eat better so you don’t lose weight.”

Again, well-intended, but it completely ignores the fact that full-time wheelchair users lose muscle mass in their lower bodies.

It’s literally a matter of use it or lose it, and when you cannot use your legs properly, then there’s no way you can maintain those muscles. It means your bum will flatten spectacularly and that, the longer you’ve been in your wheelchair, the more your legs will resemble sticks.

Training those muscles is hard, if not impossible, and will likely never be enough to keep them from degenerating. The only thing training may do, is slow the degeneration. To stop it, you have to be able to walk regularly, and more than just a couple of steps. Obviously, if you were able to do that, you wouldn’t be a full-time wheelchair user.

Eating might add fat, and although some fat is healthy and necessary, we certainly don’t want to overdo it with the fat.

Besides, if hypo-sensitivity (yes, that too, is one of the possible characteristics of autism) prevents you from feeling your hunger unless you’re already shaking, aching or nauseous, and if executive dysfunction means you either forget to eat or you just can’t do it, no matter how much you want to, it’s an uphill struggle to even remain at a healthy weight, and never mind trying to actually gain weight.

Not helpful. At all.

If eating better and gaining weight would help me gain muscle mass and miraculously grow two sizes in a mere couple of months, I wouldn’t be spending my money on expensive bespoke clothing.

So yes. This is the kind of ableism I have to deal with. (There’s more, I’m sure, but currently, these are the ones that are bothering me most.)

And it sucks.

If you’re reading this and you recognise yourself, please don’t be offended. I understand you don’t want to be ableist. I know you’re only trying to be a good friend. And I love you for that.

It still doesn’t mean what you said was not ableist. But now that you know, you can do something about it, eh?

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