Gothicc

“Ladies, gentlemen, and other distinguished guests” <- inclusive but far, far too formal

Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you ask for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"

And my therapist pointed out that this is not "help", it's "hlep".

Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hlep.

At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it helps reinforce the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.

So please, when a disabled person asks you for help on something, don't be a hleper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!

—

from I’m Somewhere Else, “Max is a Miracle”

Now, if you’ve gotten all the accommodations you can get and it’s not enough, I very much relate and it sucks and I remain pissed that they don’t offer things I need. I’m sorry, you can’t adjust your absence policy for someone with a debilitating chronic illness? For someone with severe depression? It feels like they want us to fail, but in reality the schools don’t us to fail - they want our money, they want us to graduate. They just haven’t invested the time and resources to properly support us.

Many people who work at schools (and people in general) also simply do not understand our limitations, cannot fathom how someone might need to miss so many classes, might need so much extra time on assignments, might need to attend virtually some days. Or they feel it’s not their responsibility to help, without considering that often no one else sees it as their responsibility to help either and we’re left on our own, without being able to get a degree, and often without being able to get a job. And that means we’re vulnerable to poverty and poor health outcomes (including, you know, death). Like, people don’t understand that if they don’t help us, maybe no one will, and we need that help to get by because our society is set up for us (disabled people) to either depend on other individuals for assistance with things we are unable to do or access, or wither away in isolation.

So please, let yourself do things “wrong.” Whatever you need to do to get by, if it isn’t harming others, you are absolutely justified in doing it. Submit a half-completed assignment. Take a test without having done any studying. Go to your professor’s office hours and beg for an extension. Go to your school’s Accessibility Services (or the Dean of Students, or the principal, or whoever has the authority to help you) and beg for help getting your professors to be more flexible. Beg, or demand it. Do your research if you can, cite the Americans with Disabilities Act, tell them you’re thinking about suing if you think it’ll get you anywhere. And yeah, don’t feel bad about crying, especially when you’re in an impossible situation the person in front of you is refusing to acknowledge or actively making worse. Know that if you do the normal things everyone else is allowed to do once in a while, like showing up late or missing a shower or eating junk food or skipping an assigned reading or staying up late, or whatever it is you’ve been told you can’t do because you’ll somehow fall apart if you don’t overcompensate for your disability - know that if you do those things, it’s actually not a big deal. Everyone does them. The only things that are a big deal are the things that get in the way of your health, your goals, and your survival. Try not to self-sabotage, but absolutely cut corners, and absolutely allow yourself to be human.