The Nameless Nerd

I don't think I've ever met a disabled person who didn't have the idea of themselves as an abled person haunting them. That is the yardstick by which our many of our successes are measured, and our failures pitied.

It's great that you achieved that! If only you didn't have your disability holding you back, imagine what you could do!

It's too bad that you weren't able to do it. If you didn't have your disability, you may have been able to.

You start doing it yourself, too, comparing everything that you can do to what you could have done if you just weren't disabled. Seeing yourself as an inferior version of yourself.

But we aren't inferior versions of ourselves. We are the only us who exists. There is not an abled version of us waiting to outshine us. We should not have to live in the shadow of someone who doesn't exist.

When I say "I would theoretically be interested in this activity, but I can't do it, my disabilities make it very difficult" and people try to be helpful by making half a dozen recommendations (not accessibility recommendations, just general advice), it shows they really don't get it.

If I desperately wanted to do that activity, yes, some of those suggestions might help. But I am not passionate enough about this one hobby to dedicate time, energy, and other resources to crawl my way towards proficiency in it (especially if it costs money or I would need to travel to do it!!!), and simultaneously deal with everything else I genuinely need to do (these actually necessary tasks are also exhausting!).

Additionally, at the end of the day, I would still struggle with that hobby, and that can be super disheartening for me. I don't think any of that should be expected if it's not something I want to go through.

I get that these people are trying to be helpful, but I often end up having to argue with them because they’re holding me to a standard that I cannot reach and don’t want to wear myself out for.

Disabled people absolutely can engage with hobbies that are difficult for us, but we should not be expected to force ourselves to do activities that push our very real limitations if we don’t want to. Asking us “is there a way we could make this more accessible?” is great, but please do not push us if we ever tell you “no” for something. We’ve likely already thought about it by the time we say no.

able bodied allies of disabled people when your disability genuinely has no secret upside and makes you useless to a late stage capitalist society

“If you have time to be on social media, you also have time for…” “If you have time to watch Netflix, you also have time for…” Yeah, but do I have the energy for it? Do I have the emotional and mental capacity for it? Am I pain-free enough for it? Can I focus on it? Can I do it without leaving my bed? Can I safely do it without risk of (physically or emotionally) injuring myself by pushing past my boundaries?

Actually I DON'T have time.

I need insane amounts of rest to function. There's a good chance I'll also be on tumblr, chatting to a friend, listening to podcast etc. during that resting time.

But I can't use that time to do whatever I want, whenever I want, because pushing myself past my limits will make me feel like crap for days.

So technically it's NOT free time.

This is a very helpful way of putting it. Recovery time isn't free time; it's for RECOVERY. And if you're neurodivergent or chronically ill or anything in that register, it becomes even more mandatory because your mind and body will punish you that much more severely for neglecting recovery. (Though, uh, that is definitely a thing that will happen to you even if you're Perfectly Normal And Healthy, it just probably won't be as immediate or obvious! so you may not even notice it until it MAKES you neurodivergent or chronically ill!)

I think if you're not prepared for the answer, "I'm not working because I'm disabled," you shouldn't be asking people what they do for work. Sorry not sorry. It's not fair to ask the question and then get all flustered and weird when you get the answer.

Have been doing this for years without realizing it was an actual technique and it freaking works:

Do NOT say: “I think I have Ehlers-Danlos Syndrome.”

Instead, say: “My best friend wanted me to ask you about something. I don’t even think it’s a thing, but she thinks I might have something called EDS. Ehlers-Danlos syndrome, I think? I don’t know. It’s probably rare. But have you heard of it? Do you think I might have it?”

Here’s another example:

Do NOT say: “I think I have ADHD.”

Instead, say: “So my wife said I had to ask you about something. I don’t know if she’s right, but if I don’t bring it up with you, she’ll be really mad at me. She thinks I might have something called attention deficit disorder. And she said you might be able to help.”

Yes, it is wrong that patients have to use passive aggressive techniques just to get an MRI. But, as my mom always says, it’s better to be wrong than to be dead right. Sure you could insist on being more direct with your doctor, but if that doesn’t work — and the doctor dismisses your symptoms when they should be treating them — the choice could literally leave you dead. You’d be right, but you’d be dead right.

This is not part of the article but it also works:

It works especially well for psychiatrists instead of saying "I think I have this" or "I've been looking at x and I have x, y and z symptoms". Instead just say your symptoms and let them come to the conclusion on their own.

I will always tell folks:

Doctors listen best when you play into their belief that they're better and more knowledgeable about your experiences than you

Also:

I recommend ending with a direct question about their thoughts (i.e. "Do you think that fits what's going on here?") because this kind of active request forces them to consider what you've said.

Have been doing this for years without realizing it was an actual technique and it freaking works:

Do NOT say: “I think I have Ehlers-Danlos Syndrome.”

Instead, say: “My best friend wanted me to ask you about something. I don’t even think it’s a thing, but she thinks I might have something called EDS. Ehlers-Danlos syndrome, I think? I don’t know. It’s probably rare. But have you heard of it? Do you think I might have it?”

Here’s another example:

Do NOT say: “I think I have ADHD.”

Instead, say: “So my wife said I had to ask you about something. I don’t know if she’s right, but if I don’t bring it up with you, she’ll be really mad at me. She thinks I might have something called attention deficit disorder. And she said you might be able to help.”

Yes, it is wrong that patients have to use passive aggressive techniques just to get an MRI. But, as my mom always says, it’s better to be wrong than to be dead right. Sure you could insist on being more direct with your doctor, but if that doesn’t work — and the doctor dismisses your symptoms when they should be treating them — the choice could literally leave you dead. You’d be right, but you’d be dead right.

This is not part of the article but it also works:

It works especially well for psychiatrists instead of saying "I think I have this" or "I've been looking at x and I have x, y and z symptoms". Instead just say your symptoms and let them come to the conclusion on their own.

I will always tell folks:

Doctors listen best when you play into their belief that they're better and more knowledgeable about your experiences than you

The ultimate shared experience of chronic illness:

Am I coming down with something or did I just push myself too hard and/or flaring up?

wish abled people would understand fluctuating disabilities more. i told my boss my knee was better today than friday and she's like "I'm glad it's slowly getting better" but it's not Getting Better, it's just having a good day (and tbh it's worse now than it was when I said that) and tomorrow it'll probably be unable to bear my weight again. like. stop thinking of these things as a straight line progression because they're not and I'm tired to having to explain every bad day like it's some bigass new problem when it's just. the nature of these things

I am not over this person suggesting conversion therapy.

A C T U A L C O N V E R S I O N T H E R A P Y

Anyway, how the hell is forcing me to go through torture to appease the bigots making my life easier?