It is I, your friend who says controversial things that NEED to be addressed in the #DisabilityTwitter community. But tonight, I'm zeroing in on a problem I see on #ActuallyAutistic twitter. Words will be had. You were warned.

A 🧵: I know a lot of autistic people have trouble with modulating tone and understanding it, especially online. That's fine. I occasionally still have issues. Not as much as I use to, though. But all of that is perfectly fine.

I have a rare disease called Macrocephaly Capillary Malformation Syndrome. It's a diagnosis inside a diagnosis. But that's another story. It goes by M-CM. Or MCAP. Depends on who you talk to.

Anyway, #DisabilityTwitter, here's a thread. I was diagnosed when I was 20. After a lifetime of a misdiagnosis with something similar. The name of my diagnosis wasn't officially names until the 90s. Before all the high-tech connectivity now. So of course we had no way to know. Now some kids are getting diagnosed at birth.

Stop telling people in the #ActuallyAutistic community that they should or have to label their tweets as sarcastic, rhetorical, or as jokes, etc. because people don’t get them. 1/? We shouldn’t have to. Not everyone gets a humor. And that’s okay. I understand content warnings, etc., but if you don’t get someone’s joke, just move on. There’s nothing wrong with not understanding it. 2/?

Starting my third (!!!) hashtag. This one is called #CallMeLivingProof. My aim here is to talk about how there are people with rare diseases where the known cases are in the hundreds or less. And I want to talk about how the zebra term applies to ALL rare people. 1/? Rare ≠ fading. There are those of us who don’t fit it in wholly in the disability community BECAUSE of how little is known about what conditions we have. I’m one of the eldest IN THE WORLD out of a few hundred known people. There’s a reason I said my rare disease isn’t EDS. 2/?

Gatekeeping is bad, but it seems to be especially rampant in the disability community. Am I wrong? No? Didn’t think so #DisabilityTwitter Actual rare people do exist. I’m talking about those of us in the few hundreds. There are more Pokémon now than there are people in world with known cases of my syndrome. The word ‘rare’ DOES have meaning. I am living proof of it.

Look. I know I talk a lot about having a rare disease. It's important to me. But I've been noticing lately that a lot of people are telling me that 'rare' is kind of losing its meaning because the condition *they* have has people in the thousands. Just stop it. 1/? I don't care, if you're going to be like that. So just stop it. I've been on this rare disease train officially for about a decade, and I'm still learning. BUT what I have is actually in the hundreds of known cases worldwide. 2/?

#DisabilityTwitter A 🧵about an epilepsy memory: This girl I went to school with, who was also in some of my special ed classes didn't believe at that I have epilepsy. For some reason, it annoyed her that I was reading a lot on MY own chronic condition. 1/? We were friends, but I was about to dump her by this point in the school year because she was ANNOYING. One day, she had enough, and just mocked me relentlessly about being epileptic. 2/?