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Happy disabled pride month to the undiagnosed. To those with no idea what it could be. To those who are pretty sure they know, but can't be certain yet. To those whose doctors are trying their best, and to those whose doctors aren't. To those with test results, and those without. To those whose prognosis isn't looking good. To those scared by the course of their symptoms, and with no idea what's going to happen next. Living undiagnosed is hard, and I wish you all luck.

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I love the "glasses are disability" thing because it applies to basically every complaint abled people have about disability

"You're not even that bad, why would you get that?" Have you ever used a magnifying glass for small details or zoomed in on a picture

"Why do you have that accommodation TODAY?" Why do you wear reading glasses when you're reading

"It seems like your 'needs' are inconsistent." Yeah and you wear sunglasses when it's sunny and not all the time

"But you can technically walk without that." Yeah and if I put the page really close to your face you could read it, it would just hurt and be hugely impractical, inconvenient, and limiting

"But you COULD go without it all the time, you don't NEED it to live." And maybe you could technically see without your glasses, doesn't mean it's comfortable or practical day to day

"If you REALLY had a hard time seeing you would have glasses." Have you ever known someone who couldn't afford a new pair of glasses? Or eye appointments? Someone who needed vision therapy or special prism glasses? Someone whose vision only gets bad during migraines or seizures? Someone with astigmatism that glasses can't help? Someone who didn't qualify for LASIK?

"You only use it when you're out in public." Have you ever gotten up to use the bathroom at night without putting on your glasses

"Decorating it is just trying to get attention, and it's a medical device so stop glamorizing it." Do you hate any patterned or colorful glasses frames too? Art with characters who wear glasses? People who make OCs with glasses? Glasses chains, prescription sunglasses, aesthetic fake glasses with tinted lenses?

"There are secretly lots of people just using aids for fun and attention." There are secretly lots of people wearing fake glasses or colored contacts for fun and attention, it does not affect you

"We need to find fakers, they're stealing disabled resources!" Someone pretending to need glasses is "taking" a seat in the front from someone who might need it more. That sucks and they shouldn't do that. But I'm not going to scrutinize every person who wears glasses to see if I think they really need that seat. You personally are not the arbiter of who is (based on the random times you've seen them) secretly not disabled

"My friend has that and doesn't act like that." Does every pair of glasses in production, or even every pair close to your prescription, work for you? Is your vision identical to every other nearsighted person?

"If you can do X why can't you do Y? Some people with that can do Y."/"But if you have that how can you do X? People with that can't usually do X." Some people are nearsighted and some people are farsighted and some people are both. Some farsighted people can read some without glasses and some can't. And good distance vision doesn't mean you don't ever need glasses, it's just an entirely different reason you'd need glasses

"You're too young to need that." And there are young people who need bifocal lenses

"Why don't you use this DIFFERENT aid though, it would look like you didn't even have an aid." Why doesn't everyone in the world wear contacts

"Why can't I/my friend/my kid play with it?" Do you let random strangers and children try on your glasses at the grocery store

"I was just trying to help, I thought you'd need a push/you were in the way." Are you cool with me suddenly pulling your glasses off your face to clean them, or because the glare was distracting me

"You'll eventually stop using it though right?" Are you planning on no longer needing glasses someday

Disabled people are free to add

I am aware this is not a 1-to-1 perfectly accurate post. Do not come into the notes trying to "um actually this isn't a perfect comparison." I know. Just don't

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Sarah Audsley, from "In the Doorway"

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I hope you find the people who make you feel safe to talk about how you're doing, honestly. I hope you find the people who want to support you where they can. I hope you find the people who, when they are unable to help, tell you so kindly without putting the blame on you for needing help. I hope you find your community, your people, your circle of love.

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i’m gonna hold your hand with a glove on when i say this

when disabled/chronically ill people tell you they can’t do something, then that is not your cue to tell them that they can actually or that they’ll always find an excuse if they’re looking for one.

when a disabled/chronically ill person says they can’t do something, sometimes that doesn’t mean it’s outside the realm of possibility, sometimes it means if they (attempted to) do that, they will seriously hurt themselves.

when a disabled/chronically ill person says they can’t do something, sometimes it’s preventative care, and they refuse to do that thing to prevent a flare up from happening/their symptoms getting worse in the first place.

disabled/chronically ill people are not “looking for excuses”, they are giving you reasons why. something they don’t even have to do! so maybe just accept the reasons they give you.

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i’m proud of you for continuing to survive what you’ve been going through

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today i went to the theater and i feel so guilty. i know i had to ask my mom to take me there cause i was too dizzy to go by public transport but still, the fact that i can go out like that makes me think i don’t “deserve” being considered disabled because it could’ve been worse. there’s more things like that. my joints have been aching less lately and i don’t need a gel anymore, although i still feel some pain. since we figured out my bilirubin problems are caused by lithium, i started to eat regular food more often and i do feel nauseous but it’s something i experienced everyday even on a strict diet anyway. i still have to spend a lot of time in bed but hey, this is only because of my meds, does that even count?? i’m so confused. “am i enough?” sounds like a weird question in this context but that’s how i feel right now

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The two stages of taking your meds (1) I'll take them soon. (2) Oh no.

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all my love to mostly and fully bedbound people. i feel like we're often left out of even disability conversations and advocacy, much less the wider world. we are full, real, complex people like anyone else. we deserve love, support, connection, and the ability to live the fullest life we can under the circumstances

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Happy disability pride to the undiagnosed, underdiagnosed, and misdiagnosed. So much talk and community are centered around certain diagnosis, or even just having any kind of diagnosis, but for many of us getting there is so hard, and we're often blamed or silenced both inside and out of disability community based off whatever label a doctor decided to apply or not apply to you.

No doctor can understand you and your body better than you do.

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Anyway this disability pride month I would like to shoutout disabled folks whose creativity has suffered because of their condition. I’m talking people with hand tremors and pain that stop them from drawing, knitting, and playing instruments. People whose thinking has become so disorganized that nothing they write makes sense to other people. People with chronic pain who can no longer dance. People so over medicated in a fruitless attempt to maintain stability that the wells of their imagination have run dry.

I see you and I love you. You are more than your creative output. You are not a shell of what you used to be. You are a whole, complete person, regardless of what your creativity has been, is now, or will be in the future.

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when abled people talk about employability + disability I don't think they entirely understand the domino effect of unemployment/underemployment that can happen in a disabled person's life

the kinds of jobs that are considered 'unskilled' or 'entry level' are inaccessible for various reasons (e.g. involve having to stand up for long periods of time)

the time in your life when many people are expected to start working these entry level jobs is while you're still in school. the sheer exhaustion of school means that even when those jobs aren't completely inaccessible, many disabled people simply do not have the energy to do them

without any work experience, it's very hard to get work. the kinds of jobs that tend to have more accessible workplaces are either not entry-level or require a certain level of education to enter them. also without having gone through a hiring process before, it's very hard to even know what to expect from a job, which only creates additional barriers

even if you do have work experience, being disabled is not really taken as a valid reason to have gaps in your resume, which means you immediately look like a suspicious/risky hire to a HR department

disabled people, once we do have jobs, are more likely to be underemployed than abled people, meaning that we have fewer opportunities to demonstrate our skills in the workplace, and are less likely to be able to accumulate a back catalogue of good references to take with us in the 'getting a new job' mission. this itself keeps us underemployed

NOT to mention the fact that the exact same process can happen with respect to education (the being in special ed -> being able to go to university pipeline is basically non-existent. and if it is there, it is very hard to navigate). I'm not sure yet another 'employable skills program' can get us out of this one, chief

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to everyone out there who has a learning disability

its okay if only know how to speak one language

its okay if your handwriting is bad

its okay if it takes you longer to read or that you have to read something 3 times to understand it 

its okay if can’t even do simple math in your head

its okay if getting your thoughts out on paper is hard

its okay if reading out loud is a nightmare 

your struggles don’t make you less intelligent!