My Illness Sucks

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I was at the movies tonight and a very interesting thing happened to me... I was in the bathroom before the movie and an older woman approached me. She asked how long I'd been using a cane, I told her almost 10 years. She paused and then said, “...was it hard?” (1/5)

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...and I realized this woman was going through exactly what I went through 8 years ago. So I looked her in the eye and said “yeah. it was so hard. I face planted in a Walmart parking lot before I finally broke down and did it. But it was so worth it.” (2/5)

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This woman is 75 and was absolutely terrified of starting to use a cane. So she looked at me, a young person, out and about with my cane, and had her realization. She told me she has severe vertigo, and that sometimes she can't stand up and it's terrifying... (3/5)

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...but it's even more terrifying to admit that you need help. so we talked about that fear. we stood in the bathroom at the AMC and we talked about what it feels like to take a leap into vulnerability and the unknown. and I just want to remind anyone who needs to hear it (4/5)

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it's okay to be afraid. it's natural not to want to admit to that vulnerability. but it's so worth it!! the freedom youn gain from using mobility aids is so worth it, whether you're 20 or 75. take the leap. (5/5)

I hate it. I hate the vulnerability of it, I hate having to drag it around in my car, I hate wrestling with it.

the sun mourns in vain for the white-throated rail: a comic about disability and the unwanted able-bodied grief for past selves.

(click below for the image description!)

- when a student teacher said my outfit and wooden cane were giving woodland fairy vibes

- when a guy who I'm barely friends with fought out substitute to call the office for help, explained everything when the VP arrived and held my head and neck stable when I had a lot of seizures in a row

- my french teacher and I laughing really hard in the middle of class after the first time I asked to go lay on a table in the caf to put my shoulder back in

- no one ever questioning my knowledge on the health care system, the treatment/diagnosis of illnesses or accessibility in politics class

- a guy in one of my classes calling me a badass for getting 80s and 90s during my 4 month absence but not for seizing, passing out or dislocation stories

- a girl very loudly scolding her friend for going through a door before me when I had my cane

- getting to take over my kinesiology class for the joint injury part

- a girl I barely talk to telling me my cane and finger splints are the fucking vibe

- all my friends whose diets are exactly what you expect for mentally ill teenagers accepting my salt pills when they are dizzy even though they hate theyl taste

- all my friends checking in on if an event would be accessible for me and while there continuously check in on my energy levels and heart rate

- my friends responding really quickly when I have seizures and helping keep my head on the coats

- the dude in my kin class who during the first seizure he witnessed said "you good bro?" And during my really bad series today said "the fuck is going on back there?" I love your lack of awareness buddy

- me and the drama teacher who is also the first aid staff member becoming besties and talking politics, hockey culture, gossiping about the school board and calling my seizures razzle dazzles

This ABSOLUTELY works.

i put them on my front door and anytime it opens they ring. that way if i think someone has broken in or i see someone who isn’t there i can think back to if the bells have rung, and if they haven’t i can assure myself it’s not real. obviously it’s not fool proof, like if you are prone to auditory hallucinations, but it has really helped me calm down in time to avoid major psychotic breaks. it’s a real lifesaver

Not the “oh Einstein was probably autistic” or the sanitized Helen Keller story. but this history disabled people have made and has been made for us.

Teach them about Carrie Buck, who was sterilized against her will, sued in 1927, and lost because “Three generations of imbeciles [were] enough.” (A decision which still has not been reversed)

Teach them about Judith Heumann and her associates, who in 1977, held the longest sit in a government building for the enactment of 504 protection passed three years earlier.

Teach them about all the Baby Does, newborns in 1980s who were born disabled and who doctors and parents left to die without treatment, who’s deaths lead to the passing of The Baby Doe amendment to the child abuse law in 1984.

Teach them about the deaf students at Gallaudet University, a liberal arts school for the deaf, who in 1988, protested the appointment of yet another hearing president and successfully elected I. King Jordan as their first deaf president.

Teach them about Jim Sinclair, who at the 1993 international Autism Conference stood and said “don’t mourn for us. We are alive. We are real. And we’re here waiting for you.”

Teach about the disability activists who laid down in front of buses for accessible transit in 1978, crawled up the steps of congress in 1990 for the ADA, and fight against police brutality, poverty, restricted access to medical care, and abuse today.

As we see with the recent narrowing of the diagnosis of autism, as well as how the definition of EDS was narrowed, the diagnosis criteria for disabilities is not purely scientific, and often carries motivations that are closely tied to ableism. If someone is subclinical for a disability but is suffering from or limited by it, that will be respected here.

The second is more personally motivated. We never found out what my father's most disabling disability was, but by the end of his life, he couldn't be touched without experiencing pain. The fact that I can't put a name to his disability does not mean that he was not disabled.

Not knowing how to name your disability is isolating and frustrating. But here, you are part of the disabled community.