A/N: to all
lovely girls who read my blog and found me on tinder: helloooo! Now you know
more than you bargained for about my sex life! I hope you still want to date me
cause damn, this is awkward.
***
I can’t
sleep lately, painsomnia being terrible cause I dislocated my knee (and arm and
wrist and some fingers…) and it’s BAD. Like level 9 bad.
But being
awake at 1am has good sides, like sudden strikes of productivity and creativity
that always hit me at night. So here I am, bringing you my middle of the night
thought. Tumblr would call it nightblogging I suppose? And blame Australians.
I was recently
driving with my uncle I didn’t see for 7 years. Part of my family, dad’s side,
is estranged, and he’s the part of that family, but situation being sudden, we
suddenly reunited. It turns out his wife, and my dad’s sister, works with blind
people. Now, let me just say that being a (hopefully) future interpreter, and
losing hearing myself, I know a lot about d/Deaf and Deaf culture – but I don’t
know hardly anything about blind. So sorry, and please call me out, if I say
something insensitive or offensive.
We started
talking about disability, and beside the fact apparently my uncle doesn’t
consider me a disabled person (hey, nice! Take my wheelchair and my pain too,
would you?) cause mobility issues doesn’t exist in his world, he turned out to
be extremely ableist. “Did you know? They can almost behave like NORMAL people”
level ableist. Yuck.
Being in
pain literally all the time lately, no matter the amount of painkillers, my
usual fierceness got a bit dulled, and instead of huge rant I just sat there
trying to keep my face straight and nodded. People like to take my trained
resting bitch face as an encouragement instead of sign of impeding killing
spree, so he kept talking. And he said a thing that resonated with me so much,
so awfully.
He told me
about a girl who, being almost completely blind, did two PhDs and some
additional studies while “abled people like us” (again, thanks for completely
ignoring the fact I have severe mobility issues and use wheelchair daily??) are
lazy fucks who wouldn’t do it.
And I just
broke. Let me tell you why.
Being
disabled, you suddenly, as we previously stated so many times, become public
property. People feel entitled to tell you what you should do, how you should be, how you should look, behave, BREATHE.
Let’s say
we have two typical girls, average size, white, all in all “normal”, but one of
them is on a wheelchair.
Abled girl
with unshaved legs is a revolutionary feminist. Disabled girl? Doesn’t take
care of herself, dirty, probably smells, disgusting, hit rock bottom.
Abled girl
rocking a messy look with no makeup? Cute. Disabled girl? See above.
Abled girl
dropping out of uni? Probably needed to go find a job, take care of family,
just wasn’t for her. Disabled? FAILURE. WON’T EVER ACHIEVE ANYTHING.
Of course
there are race, being fat, gender and sexuality adding additional layers here,
but in general you see what I mean?
Being
spoonies, we walk everyday having to prove our worth. We HAVE TO study, have to
be successful, be pretty, pampered, in full makeup and pretty clothes. We can’t
cut ourselves some slack. Cause we’re being constantly judged. We’re either too
much or not enough. Too visible – too invisible. Too loud, outspoken, or too
quiet. I’m being hated for being “too much” (advocate, colorful hair, LOUD,
open about my sexuality, my autism, my mental illnesses, yelling at ableists,
colorful wheelchair, you name it I have it) while simultaneously I hear I should
try harder, be more, come back to school, fight through debilitating pain,
PROVE MYSELF.
The issue
here is, for a healthy person that would be too much to stand already, right?
But add constant pain, fatigue, so many really scary health issues,
disabilities being doubled (mobility + hearing loss, blind AND mentally ill
etc.), constant struggle with lack of accessibility… I used to wonder why more
disabled people don’t go outside. Now I know. We’re, as my best friend nicely
put it, forced introverts. Cause society, let’s be honest, doesn’t like us.
I went to
my university yesterday to talk about my return after the leave I took. Let’s
ignore lack of support here, and total lack of accessibility (no disabled
toilet?? Really??). I was told school can consider my request for accessible classes
if they find me WORTHY ENOUGH. I have to prove my worth, prove I won’t drop
out, they won’t lose their money.
See a
problem here?
Being a
spoonie, we have to prove our worth all the time. Or we’re using the air and
shouldn’t exist at all. But what if I don’t want to be a famous spoonie? If I
don’t want to be a wheelchair bound surgeon or lawyer? What if I want to be,
say, a sex worker. I want to be a camgirl. Well, then, first, I’m a taboo (disabled
cam girl??? Unheard of!), I’m problematic, I’m too open about my sexuality
nobody wants to know about (but THEY ASK. See previous post.), and I am not
worthy enough. Same if I want to be something less shocking, and “less
glamorous” than a lawyer, like librarian, truck driver, or a barista (shoutout
to my lovely spoonies in these jobs, you rock!). I either have to convince
people I have a right to live, or I am not given this right.
And this is
what we desperately need to change. Cause there ARE wheelie camstars, just as
there are disabled prostitutes, like there are disabled librarians and truck
drivers, like there are wheelies working in grocery stores or being cashiers at
Tesco. And we’re all worthy. Hell, we could lift Thor’s hammer!
And we’re
glamorous. We’re glamorous when we can’t shave our legs because joint pain,
when we have face hair or boob hair, or when we’re trans or intersex, Black,
latinx (should I spell it with a capital letter? I’m sorry if it’s wrong!),
Asian, ANYTHING AT ALL. We’re all worthy, having a college degree or being high
school dropouts. Being independent or needing constant assistance. We’re all
awesome.
And ableists miss so much by not wanting to know us. And I feel sorry
for them. Cause the most lovely people I met in my life were spoonies. Not
abled, stuck up entitled assholes.
See, my
fierceness is back, cause tramadol is gold. To sum it up: we need societal
change, we need visibility projects and more education at schools and
workplaces. We need to make abled people see more, see further, take their head
from their asses.
But all in
all, we need to stay awesome, and unlearn the compulsive need to prove
ourselves. I am trying all the time. Cause maybe I am a failure, but I am an
A++ awesome failure, having best friends in the world and badass hair. And,
what’s most important – I have time, and I have nothing to prove to anyone,
cause I am my own person.
(note:
sorry for any mistakes, see: pain + tramadol)