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my relationship with disability and ableism

I’ve been thinking a lot lately about how I relate to disability and ableism.

I don’t often frame myself as disabled (not in my own mind, at least).

It is literally only in the past year and a half that I’ve been able to take any proactive steps towards dealing with my health.

The funny thing about ableism is that, in media at least, if it manages to portray any people with disabilities of any kind, they will only portray not only misleading and erroneous ‘interpretations’ of what a disability is. This means that someone like me who is just starting to go through the process of getting tested for narcolepsy, can spend years not really thinking much of uncontrollably falling asleep 2/3 times a day during often awkward situations. Because, of course, narcoleptics are those people who will literally just pass out whenever and while they are doing anything at all.

It is interesting, too, how with some ppl in the disability community it really seems that unless you have the most extreme symptoms/aspects/whatever there will be this subtle expectation that you should not talk up as much space as others1, that your opinion/thoughts on a thing aren’t as valid because ‘you don’t have it as bad.’

Add this to the ppl who are self-dx shamers, and it becomes really easy to idk, think that the disability community is for people who aren’t you.

The degree of symptom thing is… idk, something that trips me up a lot. one of the reasons why i’ve had to self-dx2 is because, i see the media stuff, and think “well, i mean. i’m doing pretty okay, all things considered.” I’m functional and able to take care of myself. Which is really all that anyone needs right? It of course doesn’t matter that I’m tired all the time, that sometimes i just thinking about dying and giving up because i’m so fucking tired of everything being so hard all of the time.

My Stern Asian Dad™ pretty much raised me with the expectation that life, indeed, is meant to be hard. that what you do is just work hard until the day you die and that is just what life is. and then. i basically had no friends. for like ever. no one to really talk about this sort of stuff, even if i had thought to ask the question:

“is it supposed to be this hard?”

and. when you are Asian, no one really expects you to have friends anyway or to be all that great at socialising, i mean… if you are a nerdy asian who reads a lot and gets good grades but can’t social? whatevs. who was going to see me struggling when the kind of neglect i had meant that when i needed new clothes or whatever my sister had to ask otherwise, nope. but maybe even if there had been anyone who cared enough to pay attention all your difficulties could maybe be shrugged off because not quite bad enough to fail dramatically or anything.

also… when things got really bad in highschool my living situation was too unstable for, well, anyone to probably be in a position to see me struggling. then i got kicked out (for the second and final time) in grade 12 and i’ve been working and supporting myself ever since. and who had time for anything?

then when i had a complete mental breakdown in my second fulltime semester at university beause i was dating for the first time (to largely disasterous effect), working 30-35hrs a week, and in full-time classes, one of which was a language class that i probably should have never gone into because of how fucking hard it was for me to learn that language and how much time/energy it drained from me. and during that breakdown (by this time i had already started to smoke as my means to self-medicate my anxiety) i managed to not self harm by going into public which lead to a coworker (since i went somewhere familiar) later using my breakdown against me as a reason for us not to be roommates.

again. no real friends to ask if having a complete meltdown and being a very real danger to yourself was ‘normal’, I just… kept on trucking. i knew that i couldn’t take time off of work (although i did quit one of my jobs). i cut back on my school schedule which is why it took me 6 years to finish my undergrad degree and pushed my debt to really high levels. but whatever. 3 4

this is how you get to be 30 years old without having a single fucking clue that

“no. maybe life isn’t supposed to be this hard. maybe you should start looking for ways to actually make it easier and better”

but i don’t think some people realise how hard it is to not only overcome that internalised ableism but also to heal enough from your shitty abusive past to actually start caring enough about your health to start actively trying to do something about it and live a better life (because, you know life is supposed to be hard and even if it isn’t you are not actually deserving of an easy life because ur shit and ur life is shit.).

ableism is what prevented me from actually engaging with my body and being an agent of my own body, mind, and health. it is also ableism of a very insidious kind to suggest that people who never had anyone in their lives who cared enough to notice how they struggled but who were able to – with all their effort – manage to survive and who suffered in silence/invisibly should, idk, keep doing so because other people have it worse?

er, this post sort of went from sketching out how i’m oriented to ableism and the disability community to talking about self-dx feels? whatever.

as far my relation to the disability community… idk. it always just seems to have this impenetrable wall of stuff that i don’t really understand and, in a lot of ways, don’t really have the energy to engage because of above but also because of the stuff i’ve seen that supports white supremacy and/or transmisogyny and i’m just………..

i’ve tried to join too many fucking communities who were allegedly there to support ppl like me only to realise that, in actual fact, there exist to support people who aren’t me, for one reason or another.

i mean… i still feel uneasy and unsure of my relationship to the twoc community despite being welcomed by most and, by most as well, being supported and cared for in ways that humble me. i still don’t understand how i fit into the community (if at all) and. yeah. at least this one i can be reasonably certain that i probably do belong.

some of this is me because i don’t know how to group and i can’t figure it out (i’ve… sort of given up for the time being because it is hard in ways that i don’t actually feel like dealing with right now, ‘cause i have a bunch of other – usually more fun – stuff clamouring for my attention.