guess who’s diseased

So are

colostomy bags

Diapers

insulin pumps

Oxygen systems

rollators

hearing aids

compression garments

prosthetics

FREEDOM AIDS

- service animals

- noise cancelling headphones/ear defenders

- wheelchair attachments

- fidgets

IT’S DISABILITY PRIDE MONTH YALL

I FUCKING LOVE TOOLS THAT HELP LIMIT MY SENSORY INPUT!!!

I love you noise cancelling headphones and music. I love you sunglasses, both outdoors and indoors. I love you gloves. I love you just being able to cover my ears or nose with my fuckin hands if I want to. I love removing myself from the situation if it's overwhelming. I love you fidgets.

Sometimes using a wheelchair means you can no longer get to the places that used to be important to you, and not because of man-made inaccessibility. I have sat with someone as they cried because they could no longer visit the place they had scattered a loved one’s ashes because not even the most expensive wheelchair in the world could handle the terrain. As much as I wanted to, my wheelchair meant that I couldn’t position myself in a way that would allow me to give them a proper hug. In that moment, our wheelchairs felt more like heavy weights than freedom.

And sometimes wheelchairs are like the legs of someone who can walk but would maybe benefit from a wheelchair themselves. Sometimes wheelchairs are exhausting and painful and you’re counting down the time before you’re able to be lifted into bed. Sure, like painful legs, you can do more with them than without, but constantly performing gratitude for something that hurts you is exhausting. And again, not because you need a better wheelchair, but because those are the limits of your body and the technology that exists.

frankly i think a LOT of "picky eaters" have some kind of sensory problems– autistic or allistic– and shame is never useful. i don't fucking care how annoying you think we are. if you've never lived through the humiliation of being the only one not eating at a dinner table, or having to choke down something disgusting you already know you hate because other people insist you don't know your own body, or getting a hunger migraine in a house full of food because none of its edible to you? you don't understand how awful it is to have food issues.

whenever i see people draw this distinction between being "just a picky eater" and "having a real problem" all i think is, who does this serve? most people don't even know ARFID exists. there are so many undiagnosed autistics, or just people with a variety of issues that aren't officially diagnosed. why do we need a medical label in order to be treated with respect and compassion? why did i need to be diagnosed as autistic for my family to realize the abuse they put me through for years because of my eating habits?

it's such an easy habit for neglected groups to fall into– the idea that a medical diagnosis can save us. that by appealing to the medical/psychiatric industry, we can be protected from abuse and given basic respect and resources. but the truth is that it should never have come to this in the first place. dignity doesn't come from an abled doctor telling you that there's a medical reason for your symptoms. it comes from being a person. once you accept that you need a Good Reason to have your needs respected, you doom yourself to neglecting and abusing those who have your same struggles because they aren't lucky enough to access medical recognition.

I have never seen another allergy that has been so viscerally hated and mocked by people working in education like nut allergies. I’ve seen fellow teachers cringe that their classroom was the “nut free” classroom that year. Support staff that are trained and willfully don’t follow cross contamination protocol in the lunchroom because it’s too “tedious” or “time-consuming”. Full preschools + childcare centers that refuse to accommodate nut allergies. Schools where the only free lunch is a PB&J. Before/after school programs and summer programs whose food curriculum has nuts and doesn’t provide an alternative activity.

Allergy discrimination is so so insidious and prevalent. It’s happening behind their back and it is everything from the exposure joke to possibly causing someone to go into anaphylaxis from willful ignorance.

I was not downplaying this. The stigma is real, and people are 100% willing to let people with allergies die.

When my mom tried to enroll me in preschool, the school principal refused any basic accommodations like asking everyone to wash their hands after lunch before re-entering the classroom, not bringing straight up peanuts to snack time, etc. There was no such thing as a nut free classroom at the time. The principal told my mom and me (I was 4 at the time and definitely in the room when this happened) “if she’s so sick, she belongs in a bubble, not at school.” THE FUCKING PRINCIPAL! My mom had to threaten legal action under the ADA to get them to comply.

Look, I was on a 504 accommodation plan under the ADA for the entirety of my formative education (elementary thru high school). That’s all 12 years!!! And yet I have had teachers hand me items I’m allergic to as a “reward”. I have had other kids intentionally try to send me into anaphylaxis. One girl in 3rd grade asked me why I “wasn’t dead yet” when she had put on a lotion with almonds in it and then held my hand. I’ve had other parents write letters to the school saying what a terrible inconvenience it was to them to not be able to send their kiddo to school with PB&J, demanding I be Removed to a special education only class if my “needs” were such a “burden” to others. During elementary school “parties” held in the classroom on holidays and for student birthdays, I was always sent to sit out in the hallway or go to the library, because even though parents were only supposed to bring safe foods into the room (they had a list of all my allergies) they never once got it right. Administrators fought me tooth and nail for the right to carry my epi pen and other meds on my person at all times. Why they thought I would start dealing benadryl on the playground, I do not know. At lunch, I was always sat at a specific segregated table labeled the “Nut Free Table” alone because who the fuck is going to sit there with the literally segregated outcast? But ONCE notably I was sat on one side of a line of blue masking tape down the table top with the rest of my class on the other. One side was the NUTS side!!! As if allergens would respect that tape barrier. (Spoiler alert: they do NOT!)

Literally from preschool to my senior year of high school, I was “the peanut kid”. Other parents gave my mom books about how to “cure your child’s food allergies from HOME” by micro dosing with things they are allergic to (please never ever ever even attempt anything like a food challenge with a known allergen outside of the care and supervision of a medical professional, holy shit that’s so dangerous). My mom joined the PTA in my last year of high school so that I could maybe participate in all the senior-focused events like pool parties and breakfast at school on the first Friday of the month. The number of times another parent either (a) decided it wasn’t worth it to care or (b) intentionally brought peanut products to an event to spite either me or my mom??? I literally could not count. It happened constantly.

College was better, but I still occasionally had people BALK when I asked them to please not eat a Nature Valley bar with whole nuts in it right the fuck next to me in lecture, thanks. Work parties and catered lunches were always impossible. A few conferences I went to as an undergrad were SUPPOSED to be nut-free, but always fucked up the catering. At one, they set up snack tables by every exit of the conference auditorium so that when people left after the talk, they all congregated around the exits and opened macadamia nut cookies and granola bars. When I had subsequently had a massive allergic reaction and needed help getting home (I’d walked) after taking like 200mg of benadryl, the staff offered me a stack of napkins and a lukewarm apology.

Food allergy is a disability which touches literally every aspect of a person’s life. Everytime I share with someone new about what it was like growing up with my allergies, they have never heard anything like it in their lives. They’re always like “holy shit, seriously??? People did that??? Kids tried to kill you??? Parents wanted you kicked out of the classroom????” Yeah, man. Yeah. My own brother (who doesn’t have any allergies at all) doesn’t understand why I don’t “eat more adventurously” and why I won’t travel internationally. So, saying it REALLY LOUDLY for people in the back:

No access info for any of the venues

Box office is inaccessible

Google “[festival name] accessibility”; get info on their “accessible pricing” (pay £1 less if you want to). No mention of free tickets for essential carers

Do a lot of disability detective work; most venues don’t have wheelchair access

One claims to be accessible, look inside: “we’re an accessible venue. There are three steps to get in, but we can help you with those”.

“Everybody welcome*”

We have people who can carry you up the stairs

Even worse than "3 steps but we can help you!" what do you mean you're going to carry someone up the 1 to 2 FLIGHTS of stairs? What?

So I carefully explained how I have a manual handling plan that sets out how I can safely be moved and that I cannot just be lifted by a random stranger who isn’t familiar with my disability. And that even if they got me up the stairs, my wheelchair is twice as heavy and there is no way they’d get it up the stairs.

I asked them, knowing that, what was their plan once I was upstairs, just lay me in a corner somewhere and hope I didn’t get stepped on*? Cause that doesn’t sound like a good party

It didn’t change anything. Events continued to be in the same venue, and they stopped trying to include me at all.

so. you want to bring a heavy, fragile powerchair upstairs? a powerchair that, if you drop it, could mean... failing out of school, losing a job (and unemployment for months-years), dying of pressure sores? it's not low stakes.

i learned very quickly that if i said "im tired all the time and cant find the motivation to do schoolwork" theyd say "no ur just lazy, stop making excuses" and if i said "my ritalin makes me feel uncomfortable and itchy all day" theyd say "stop being difficult and just take the pills" and theyre the adults and im just a lying lazy kid so what they say goes

so since correctly identifying and expressing my feelings was punished i focused instead on making excuses that adults would accept. "i cant bear to spend another day doing busywork in that awful windowless building where all the students and faculty hate me" turned into "i just threw up". until i learned to skip the step where i ask myself why i feel so awful, bc that information sure isnt going to help me

Cut to me getting independent access to my family medical history, and seeing that one of my bio parents had the same damn tic. Talking to them as an adult, it’s still there! But no, I had to grow up hearing about how I was just screaming to get attention in every sphere of my life.

They see disability as a little spice in someone's day-to-day, having to try a little harder, but for them that doesn't sound so bad. Abled people *can* try harder. That's the whole point. They don't give their 50%, let alone their 100%. So they see disabled people and think, "oh boy howdy, that one has to give 60% all the time, what a fucking whiner. We all have challenges!"

They literally cannot fathom of what it would feel like to have to give 120% as your baseline. NDs, able bodied people, they think about that time they were getting 4 hours a sleep a night during their stint in the marines or working 80 hour weeks when they'd just started a new business or, hell, how exhausting it was right after their triplets were born. And they think, "Now THAT was a challenge. That's a real struggle. I wish I was disabled so I could have avoided having to do that!"

It never sinks in that the exhaustion they're envisioning is our day to day before we lose the car, before the accident, before that new job. It never occurs to them that life doesn't give a shit if we're disabled or not, we have to deal with everything life throws at us, too.

They can't imagine a kind of tiredness that doesn't alleviate with a weekend off, or even a year off. They can't imagine pain that doesn't ever relent. When they feel awful, they take a day off. They can't imagine getting sick on top of already feeling like they have a bad flu 24/7. How would they?

Abled people can't imagine what it is to keep struggling, keep pushing yourself even as you feel your body crumbling under the strain because there is a gun to your head if you ever stop. And they can't imagine working that hard and having nothing to show for it, no rent money, no job, no car, just surviving being harder than the hardest thing they've ever done.

No access info for any of the venues

Box office is inaccessible

Google “[festival name] accessibility”; get info on their “accessible pricing” (pay £1 less if you want to). No mention of free tickets for essential carers

Do a lot of disability detective work; most venues don’t have wheelchair access

One claims to be accessible, look inside: “we’re an accessible venue. There are three steps to get in, but we can help you with those”.

“Everybody welcome*”