I wanted to do something a little different, so once a month Im hoping to have a guest post from one of my friends who have different disabilities. The purpose of this series is to show that we have lives like everyone else and to get people who dont have disabilities to maybe think about us a little differently. This is post number two, and I am so excited to have had two out of two excellent posts to share!
What should people call you if they want to ask you questions in the comments?
What are your diagnoses? How old were you when you were given those diagnoses, and what was the prognosis?
I was diagnosed autistic at 3 1/2 or so, back in the 80s when “autism” automatically was seen to mean “never independent”. When I learned to talk at 5 they were like “huh, maybe she’ll be ok”, at 7 they decided “oh god. She was less odd when she didn’t talk” & it evolved into this very strange either or, as in “either she will take over the world, or she will be completely dependent”.
The epilepsy diagnosis came at around 8 I think? It was considered to be not a big deal, maybe something I’d grow out of-and I did appear to for a couple years. If you’d told my parents & neurologist then that I’d consider epilepsy my most disabling condition in 20 years, they’d not have believed you.
I got Ehlers Danlos at 18. The diagnosis, not the condition. The accompanying Chiari malformation was noticed when I was I think 24? Given where I currently am with this, prognosis: occasional nuisance.
In 2006 I was diagnosed with Central Adrenal Insufficiency as well-so I don’t make cortisol even in situations where I could really use some cortisol-and it’s pretty much the lowest maintenance rare metabolic disorder I could possibly have. Untreated it was extremely disabling (annnd life threatening), but now I can forget it’s a thing for days at a time.
What is your level of education?
I have a degree in Special Ed & am currently taking higher ed courses in hard sciences in order to go to med school.
Do you have a job/have you held a full-time job in the past? What is/was it? If you arent working now, why not?
I currently coach trampoline & tumbling part time. I’ve worked in classrooms, tutored math, I teach kids self advocacy, but mostly it’s all been part time. I don’t think I could work a desk job, & that’s what tends to be available full time until you’ve got more letters after your name.
What kinds of things do you like to do in your free time, and why?
I write a lot. I dance. Umm…*blushes* I’m a cosplayer; my Teenage Girlock is kind of fantastic. I play D&D. I like reading, although this is prohibitively expensive with my reading speed. I like do do some outside stuff like rock climbing, kayaking, jumping off cliffs into deep water (I’m a bit of an adrenaline junkie…), & I like visiting playgrounds.
Do you have any pets? What type are they? Do they help you in any way?
I have my GABA. She’s a rescued Bombay cat. She can tell when I am going to have a seizure, and she is very cuddly when someone is in any sort of distress. Also, she likes autistic people. A LOT.
Describe how you feel when you have a seizure.
Before it starts I get kind of (very) irritable and out of it, like senses aren’t synching up, & I struggle staying tuned in to anything. Then I have no idea what happens except by reports from witnesses (I have partial complex seizures). After they’re over I am extremely tired, embarrassed, upset, tired, & disoriented. Oh, and tired. I have heard Stories about postictal Kassiane but I don’t know how exaggerated they are because I don’t remember them.
What kinds of treatments do you use for each of your disorders?
I take medication for epilepsy. I used to take more & eat a special diet & take a WHOLE LOT of supplements, but now I’m down to 2 meds & folic acid & an almost-normal diet. I also have blue lensed glasses for use in not-ideal light.
For adrenal insufficiency I need to take daily steroid pills & I have an emergency injector for if I get injured or throw up, and antiemetics to keep me from throwing up if at all possible.
For EDS I…don’t do anything really, actually, except keep a lot of braces handy in case something subluxed & I didn’t notice. I also have a medically sanctioned caffiene addiction for the Chiari headaches. (I’m kind of hoping that’s all the treatment it ever needs)
I don’t do anything “for autism” except avoid things that I’m neurologically not able to do. I work with kids because they don’t care how weird you are. I carry earplugs, my blue glasses, and usually something soft & have bad-sensory-day clothes. My iPod is full of soothing, repetitive music. I do have some notecards with important things written on them for if I can’t talk, but that’s an accommodation, not a treatment.
What kind of advice do you have for people who dont spend a lot of time around individuals with disabilities?
I don’t think it’s possible to not spend time around people with disabilities-you may not be able to see it, but that doesn’t mean it isn’t there. But for people who don’t spend a lot of time around people who aren’t passed as non disabled…we’re people. There are things we are good at. There are things we are not good at. Kind of like…everyone else!
The patronizing talking down to people thing, don’t do that. Always assume that people understand you & have opinions that they deserve to have understood. And don’t assume anything about someone just because they have a disability. We are all very different, just like everyone else.
What kind of advice do you have for individuals with disabilities who are interested in getting involved in self-advocacy?
*giggles* Oh god, grow a thick skin, because if you start saying stuff and people start listening, a lot of them are going to be really unhappy & they aren’t nice about it.
It’s much easier to do when you know other activists (I hate being called a ’self advocate’, it’s like “aw how cute, it thinks it can talk for itself” and is often used as opposed to, say, ‘autism advocates’, who are usually parents. No. They can be parent advocates. I’m an autistic advocate) and can talk things over with them…difficult topics, things that are hard to approach, stuff like that. Having a network is invaluable. So is allying with other marginalized groups. And so is learning civil rights theory, not just disability rights but all rights struggles…there are things in common.
And never let anyone tell you to just be nice. It doesn’t work any better than being direct.
What kind of advice do you have for people who would like to be allies for individuals with disabilities?
I’m of the school of thought that you can’t declare yourself an ally. The people you are allying with get to make that call, that designation. Real allies don’t do what they do to get ‘points’, but because it’s the right thing to do.
To be our ally doesn’t mean to talk for us or over us. It means to stand with us. Don’t make it all about you-center disabled voices, signal boost us whenever possible. If someone says something critical about nondisabled people, don’t jump in to say “We aren’t all like that!” If you’re saying that, honestly, you probably are Like That.
Don’t put words in our mouths. Listen to us. Ask questions if you don’t understand. Learn about civil rights, about oppression & privilege, & check your privilege often. Be aware that people listen to you more than to us, & every time it becomes a thing shut it down. Be ready to call out ableism & general crappiness when you encounter it–and you will. Be ready for people to be mad when you do this. Do it anyway.
I freely admit that I expect the world of allies. But I only expect that from people who I think can deliver.
What is the one thing you most wish would change about the way individuals with disabilities treat each other?
I really cannot stand the hierarchy of disability thing. People with physical disabilities aren’t “better” than people with intellectual disabilities, people with invisible disabilities are not better than those that are apparent, et cetera. That hierarchy? It’s extraordinarily ableist, even if it puts whatever group one happens to belong to at the top of the ladder. We can’t allow discrimination against any of us because a) it’s wrong and b) it gives legitimacy to other discrimination down the line. We need to have each other’s backs.