in celebration of Disability Pride Month i want to recount some recent events and then get into some Disability Justice theory. if you want to read more about my personal history, check out the disability tag.

another brain surgery in the bag

i had yet another brain tumor removed at the end of April this year. it was in the area responsible for motor control in my right arm and leg, and because i started having some muscle spasms (they called them seizures) in that area a month before, my doctors were concerned enough to want to move forward with surgery as soon as possible. there were potential risks of course, such as losing some or all of the functioning i had on that side. it was extremely anxiety inducing but i went through with it because they know what they're doing. it went really well with none of the possible lasting effects 😊

now i'm mostly being bothered by tumors elsewhere in my body. a large one on my right sciatic nerve gets more irritated every time i sit down. i can't lie on that side or even flat on my back for very long, and a different tumor is scarily close to my aorta on the left, so my comfortable sleeping positions are slowly dwindling to none. it feels like i'm playing catch-up since my body grows these faster than medical systems can act.

why are we so focused on erasure?

there are many non-profits which solicit donations in the name of diseases with the primary mission of "finding a cure". what does it mean, exactly, to be "cured" of a genetic condition? what i want is to be cared for as i am, to live a fulfilling life despite or even in harmony with this. i don't want it gone, i want it to be responded to properly in a way that considers my wellbeing. one organization in particular funding research around my condition claims to want to "end" it, which just doesn't sit well with me; it all seems a little eugenicist to me. the stated mission of organizations like this one has always felt disconnected from the way i view life, and i think i know why.

health & capitalism

there's something fundamentally wrong here and i think you feel it too. i am extremely privileged to have gotten this kind of treatment and support from my family on numerous occasions, when there are millions who would die from such things because of circumstances outside of their control. the fact that healthcare is at all tied to people's financial means is a deliberately genocidal project. the recently-published Health Communism [1] [2] taught me this, but it was pretty clear to me as soon as i had to learn about health insurance as a young teenager and it's only become more apparent since then. the individuals making hospitals run definitely care deeply about their patients; these are systemic issues that one single person cannot fix. we must work together as a society to dismantle these systems of oppression.

insurance companies love to take your money, and hospitals love to take your time.

i attended DCC's Cafe Crip zoom seminar about anti-capitalism on June 27th. it was a joy and really inspiring to see so many attendees. i wasn't able to pay attention to all of it because there was a lot going on at once, but it was as accessible as they could make it. i had the gallery view, chat, and captions open side-by-side on my ultrawide monitor to try to catch as much as i could, but man zoom's UI is fuckin weird. it was really nice that one of the speakers would regularly recap what had been said in chat, because it kept jumping around whenever a new reply was made. they also had professional stenographer captions available for free through an independent website.

one well-known clinic near me organized something this month where a bunch of people with the same condition as me traveled in and met with the same doctors, but we didn't get to meet each other. there was no support group component to it and i'm not one to strike up conversations with strangers in waiting rooms. it was all about efficiency for the staff, and boy howdy, efficient it was. i spent about a minute in my seat before i was called back; i checked in with the nurse, and then waited much longer for the actual doctors to see me the moment they were done doing other things.

i brought up this suggestion with my doctors at the very end, and apparently i was the first patient to mention it. i'm kind of baffled. we need to talk and hold space with each other now more than ever.

disability justice is the only way up

in my experience, everything points back to disability. i can't work because of it. my social life is shaped by it. it's intertwined with my gender identity too. i've accepted that this is my life, and i am going to do whatever it takes to create a better future for people like me (and everyone else, for that matter). so what have i been doing?

• i started a Matrix chatroom named after the concept of a care web; it's a place for us disabled people to talk about our experiences and share community resources. places like this already exist across the internet and physical world, and i chose Matrix because i don't like corporate platforms like Discord and i haven't found anything like that on there. (contact me at any of the social links on the home page if you'd like to join. it's public, i'm just leaving the address off of here to avoid inviting spam bots.)
• i've been supporting my friends who want to learn ASL by sharing textbooks i acquired for college-level classes and showing up to Deaf events for moral support (and to foster my own skills!)
• three years ago i started a digital free library piece of software, which i believe was my first foray into the Go programming language, and i've been curating continuously since then. i've added several political and disability justice works that have led me to this point in hopes that they will do the same for others. i've deployed it twice now at pride tabling events and it received much praise at last month's.
• i've been connecting with my local Deaf/HoH community which has helped to improve my own sign language skills. i've also been regularly attending a brain injury support group. not everyone i meet has the same political bent as me, which i think is very important for building solidarity and spreading class consciousness.

these may seem like small steps individually, but i can tell that i'm making progress. you may also have noticed i didn't mention current events in the US or worldwide news at all. because everything seems so horrifying, i have to focus my efforts on the smaller scale while i worry about how i personally am going to survive these big oncoming changes in private. if you can stomach it i encourage you to get involved but i'm not here to lecture you. the little things can make just as big of an impact, and you can always start somewhere.