Every time when I in my good will reach out to people and want to believe they're not so stupid they prove me otherwise. I swear. Every. Single. Time.
You might've notice I was off from this blog for a month or so - mostly because Christmas happened and my family outside of me are devout Catholics so there was the whole cleaning cooking suffering ordeal (my mum was cleaning, sister was cooking and I was suffering, don't make the mistake), but also cause no matter how chill I seem on the outside, dealing with upcoming death is…depressing to say at least. I got a little bit antisocial, a little bit sleepy all the time and a whole lot sad. Oh, and I stopped showering, that too.
Anyway, I’ve been forced to postpone my depression to after midterms, because uni doesn't discriminate and no matter how Dying you are you gotta study. And sometimes beg. Yesterday it was the latter, and I was forced to meet my sculpture teach who somehow cannot understand the term “accommodation” and forces me to do sculptures in clay I literally cannot do cause of my shitty hands and muscle loss in arms. So I went to beg her to let me pass somehow, cause I'm in no way gonna be a sculptor, I just need this goddamn course so I can happily live as a painter slash high school teacher. Ya feel me.
As I arrived to the uni building, and my uni is intersected into three (or four? Could be wrong) different buildings, I found out, surprise surprise, a staircase with no elevator, even tho the teach said the building is accessible but again maybe that word is also not in her vocabulary not gonna judge. So I was happily and calmly (oh the joys of opiates treatment) in the corridor when this older gentleman spotted me. He was busy boring some poor other student to death, but she went out so it was me - the next victim.
And you see, no matter how salty I am on this blog, in real life I'm like the most polite, gentle girl ever. What bites me in the ass quite often but what can you do when you were raised by a woman who apologizes for existing and also is moderately autistic in this quiet, a little bit withdrawn way. I'm a daughter of my own mother and so I am like that too, and also autistic as well, so there wasn't much hope for me.
The guy started asking if I'm a student and he seemed just okay-ish in this boring way cause he cracked some unfunny jokes and in general we had a quite pleasant chat. Until. Oh until. Until he went all in, 0 to 100 real quick - and posed one of question I've never, legit never, heard asked so far, and that's an achievement considering bullshit I put up with everyday.
“I suppose it's not my business but how do you pee?”
Lol. Hint hint you were right not your business.
But. I'm polite yeah? So I bite my tongue while my brain screams at me to tell him “I call ghostbusters how do you pee?” In real Alexa style, and I force this very insincere smile and say I ask mom for help.
But you see, as I mentioned, real Alexa style would be a rude salty answer and, you see, incidentally real Alexa is me… so before I could bite my tongue again and cherish in the taste of blood, I continue “…why do you wanna watch?”
He was offended, obviously, but at least I was true to myself I suppose.
This post is basically just me telling you an anecdote of how once in my life ableism turned quite funny, but also you know, I had this thought: it's 2017 and we have internet so instead of asking rude questions to wheelchair using strangers on the streets you coulda just google them. But then I wondered: if you google it, will you get an answer? Cause I bet I'm not the only disabled person who's quite pissed (pun intended) with obnoxious strangers irl, and so I doubt anyone wants to continue the same online.
So. Here you go and no judgement cause you were smart and googled (or maybe you just read my blog regularly, then full judgement cause I'm fucking terrible what are you doing here).
How do disabled people pee - not paralyzed just EDS edition.
Let's assume the bathroom is accessible - then I just hold to the railings and move myself and done.
Let's assume the bathroom is inaccessible aka your normal home bathroom for example - then that's why I carry my portable cane with me all the time, shit is tiny and fits into my backpack and it's a lifesaver when I need to get to a place wheelchair won't fit.
Here you go, mystery solved! So many spoonies saved from obnoxious creeps! Nah just kidding obnoxious creeps don't google their shit. But you did and so I'm proud of you.
And here's an advice for everyone who's abled and reading this: maybe don't ask strangers how do they pee, cause it's rude, and also they do it just like yourself.
Since it's midterms and since I'm typing it waiting for my ride to my piano class, I'll just fuck off now. Have nice January people and to lucky polish ones who start winter break soon you're awful awful people and I envy you cause guess who's finals are going through whole January AND February, unbelievable I know.
Kiss kiss bye bye and see you next post.
Blogging with Alex - your everyday dose of angry screaming!
Okay, I wanna start with thanks to everyone who messages me about this blog. You guys keep this angry lesbian going, I wouldn't have any motivation without you. You're great. Kisses to you.
And shoutout to my dad’s girlfriend who’s stalking me on social media! I wonder of you found me here as well?
Today is one of the shittiest days of my life. And considering my past that is a huge thing. You see, there are days when I’m happily and patiently enduring abled people's antics.
Today is not that day.
Sure, every time I go out with my dad it's An Adventure, so I shouldn't really expect anything else, but apparently life can still surprise me.
Today my dear father told a person helping me with opening door..not to help me. Which proves further he still doesn't believe me that I'm actually, you know, slowly dying.
But hey, it's not like we spoonies have to prove our disability over and over again! It's not like I carry my geneticist opinion with me everywhere! And my disability ID! Not at all!
Except we totally do and I totally am.
We have to prove ourselves all the fucking time. Everyone around thinks we’re faking for social benefits.
Ask any disabled person and you’ll learn that those so called benefits are literally nonexistent (I just learned it's actually nonexistent and not “unexistent”. Huh. The joys of foreign speaker.).
Abled people want our things. They want our bathroom, our ramps, our accessibility devices. Everyone around me keeps saying I only have my iPad cause I wanted a new toy.
Since i got it along with my stylus, I relearned how to draw, I started writing my novel and new fics again, I actually am able to take notes on lectures and I, reading books again cause I finally can hold it. All in less than two weeks.
But the thing is people don't want to see. They don't want to see my progress and be happy with me, they choose to be jealous over accessibility devices I have.
I've got people saying that I'm lucky I cant take care of myself cause I don't have to worry about future. They don't understand that I do. I have to. More than them. I have to deal with fact I'll be dead before 50. You will never understand how that feels unless you're dealing with that. I dread everyday, cause I'm on a countdown.
Not to mention I have no one to take care of me in case something happened to my mum. I literally will be left to die.
But hey, I don't have to worry about finding a job!
You see, you all want our stuff without taking actual disability, you don't want wheelchair, shitty hands, pain, dying. You just wanna nice stuff.
And I know I've written about this before and I'm repeating myself. But maybe, just maybe, it'll stick with someone. It'll change someone. So I'll keep saying that.
On the other news, uni started today and I still have no idea what I should do. On Wednesday I'm supposed to try to meet some of my teachers..and beg them to let me work from home?
The thing is, begging…well. It's not my style. I'm more of a “you won't get me accessible classroom, I will see ya in court” person.
So. Await updates on my hopeless case.
And if you're religious could you maybe pray for my gran? She's having a major surgery and I'm really scared she won't make it.
Thank you for all your support.
A/N: Unedited post. All mistakes are mine and I'm sorry.
---------------------------------------------------
You know,
this was gonna be a different post. I actually almost finished it. But then I checked
facebook, cause I’m a chronic procrastinator. And thus, this post was born.
I disappeared
for a while from here, cause a lot of things were happening at once. One of
them is both fucking amazing and fucking sad – I got professionally diagnosed
by geneticist with advanced EDS type 1, meaning two things: I will get highest
disability benefits, and my health is a fucking disaster. I won’t walk again,
my hands are deteriorating quickly. Dealing with diagnosis is going…well, badly
is one word. I’m trying my best, but a lot of times I’m just very sad and
tired.
Most of
times, I try to avoid social media outside of tumblr, which is my “safe place”
where all disability-related tags are blocked. I try not to think. But couple
of things happening made me make an angry post on facebook, calling out people
who only help disabled folks (focusing on wheelies) to make themselves feel
better. You know the type, right? Yeah.
You see,
lately my mum, who is my caretaker at home, all the time, 7 days a week, went
to job-related course. My mum is unemployed, and tries to find a job for a long
time now, so it’s great! Less great is that no one from my family actually
helped, so she had to leave me alone at home. And it was bad. 4 days now, twice
I had to almost call an ambulance, and once I fell from pain and couldn’t get
up. I’m not fitted to be home alone, and it makes me angry, of course it does,
I’m a grown woman and I really wish I could be independent. But I’m not.
I have two
aunts, I have a father and my father have a huge
family, but no one agreed to help. Cause they all pretend I’m not sick. I’m
bitter as fuck so I’m gonna leave this aside, and focus on what I wanted to
say.
I made the
post about this family, but hey, it was typical angry vagueing, I didn’t
mention anyone. And lo and behold, one of my aunts jumps, angry, asking who do
I have in mind.
And, you
see, it’s where this post brings us. To people like my aunt.
I can’t
really judge my aunt, as her disabled daughter died almost 3yrs ago. She
definitely knows the struggle – of a parent.
She doesn’t know the struggle of a disabled
person, so she can’t put her opinion here.
You cannot
say you’re a good ally, good family member, when you actively avoid helping
someone who asked for help. You just aren’t. You can’t just help us to make
yourself feel better when YOU need it. You gotta help when WE need it. Got it?
When I’m on
my chair and you’re a caretaker you don’t push me or give me stuff when YOU
think I need them, or when it’s comfy for you. You listen to ME.
So, in
short: if you only help when you feel like it, you’re a shitty ally.
You can’t
call and ask if I need help and when I say I do say you’re busy. It doesn’t
work this way.
To my
family: fuck you.
To you, my
abled readers: please don’t be like that. We depend on your help.
To my
spoonie readers: my heart is with you.
Alex out. Cause
I’m too angry to continue.
After three
years of avoiding anything even remotely related to love and romance, I decided
to go back to dating scene.
And I did
what every polish lesbian does when in need of meeting new people. I got Tinder
account.
This post
is not about my dating adventures though. It’s about how dating when you’re
disabled looks from the inside.
And it’s not pretty.
After
ditching so many possible candidates who, curiously enough, disappeared among
finding out I’m on a wheelchair, I actually met couple of nice girls. In a mess
of uni finals and me being constantly sick or in the ER, I managed to schedule
a meeting.
And I got
tachycardia syndrome linked to drop od potassium level, and landed in the ER
for the whole day. Hospital Glam aside, I was pretty disappointed, especially
that after that flop our conversations kinda ceased.
I kept
talking to others, and liking one girl in particular (shhhh it’s not a crush!)
I decided to meet. We’re meeting tomorrow. And here’s what I have to say.
Dating me,
and even wanting to be my new friend, you have to realize one thing: you are
also dating my disability. You’re dating my wheelchair. And my illness. It
comes in the packet.
I’ll
probably cancel couple of meeting due to pain being too bad, catching
costochondritis for the 10th time this year, or sudden ER emergency.
If that
sounds bad for you, if you’re gonna make me feel bad for that, here’s the news
for you: you’re an ableist. Surprise!
But it’s
not only that.
To get to
the meeting, I have to beg. I, like
lots of disabled folks, have abusive caretakers. My mum, who cares about me
24/7, is disabled herself, and due to that doesn’t drive. My dad, who drives,
is abusive. Hence, being unable to take a bus myself, not having another
caretaker, I have to beg my father for help. Cue him humiliating me, putting me
down, and sometimes flat out refusing to help.
It happened
today, and I still cringe from some stuff he said. And I’ll have to put up with
him being the worst caretaker in the world.
You may be
curious now, why do I, 21yrs old grown woman, need a caretaker. What does
actually a caretaker do. I’m here to provide an answer: being on a wheelchair
you need someone with you, to help you on pavements, push you up if the road is
steep, handle you things that are too high (like in shops), and so on and so
on. For me, with my hands being affected too, I need constant help because I
can’t wheel myself for a lots of times. I also can’t just stand up when my
chair won’t go through certain terrain. You got me? I need someone to help me
with stuff my body will refuse to do.
But let’s say
I got to the meeting. Caretaker is out, leaving me with my date. If we want to
be actually alone, my date must take the role of caretaker. Even if she’s good
at that, imagine how I feel, with an almost stranger taking care of me in this
intimate fashion? Pretty fucking embarrassed is the word.
As a wlw
(woman loving women) I also have to deal with homophobia that is sure to affect
me, and pretty goddamn scary after last events.
And then
starts the whole “do we match, do we have something to talk about, do we like
each other” stuff.
As usually
on this blog, I Am Bitter. I am already tired before I even went out. Instead
of being excited about the meeting, I am embarrassed, tired, and scared.
Glamorous
life on the wheelchair. Places are inaccessible, people are rude and ableist, I
am in pain.
I usually
have some ideas what to change so the situation would improve, but without
whole societal change here, we can’t reach anything. People’s attitude needs to
change, we need accessibility and more ways to get rid of abuse in families
containing disabled people, because the ways we have aren’t working. Without
that change, all disabled girls, and boys, and nonbinary people, will still
have problems connecting, meeting new people, finding love.
I want to
be that change.
But I also
just want to be 21, love women, enjoy summer and be happy tomorrow.
And while
losing my health, I also lost that.
And this is
so fucking sad.
I was to my
new therapy, only a second meeting, when it was said.
“Well, you
have to let yourself feel grief. Be scared. Be afraid.”
And it got
me thinking, cause it’s not the first time I was told this when I confess I do
not cry. Like, at all. Like people think I need to be scared, like it’s taken
for granted I MUST be scared.
The thing
is. I am *not* afraid. I worry. A lot. I overthink. I can't sleep. But I am not
scared.
It's sad,
when you look at it - someone so used to pain they are not scared of their
whole future life being pain, worse pain. But it is what it is.
I am okay
with my chair. I am happy I'm on my chair.
And that's
what people can't seem to understand.
I have a
stalker. My relationship, one where I ended up raped, abused, severely beaten
up, was as you can imagine a rather dramatic thing, with a rather dramatic
ending. I cut all the ties connecting me with my ex – except my facebook
account. How do you ever chance your facebook account after something like
that? I blocked her, that was all I could do.
But I
forgot she had friends, simply cause for three years she didn’t let me have
any. And one of her friends (at least I think it’s her friend) is actively
stalking me. And by stalking I mean obsessive checking my account, liking
posts, always lurking – and messaging me. I also met her couple of times
outside, but she was never trying to approach me, so I let it be.
Today my
stalker found out I am on a wheelchair, and started to write a huge soliloquy
about how sorry she is. And me, being my borderline self, and having no self
control whatsoever, flipped my lid. Cause it’s my big pet peeve – people saying
how sorry they are I am disabled. I wrote her a message, as nice and proper as
I could be (which is not much usually, let’s be honest) telling that there’s no
need to be sorry because I am happy, and I refuse to be treated as worse.
And she was
SOOOOOO SHOCKED. She couldn’t comprehend I could be a wheelchair user – and
happy. Happy??? I should be weeping, mourning my lost legs, I should be
suicidal and seeking active help.
We all
should, shouldn’t we? How many times had you someone expect you to be sad
because you are disabled.
Surprise! I
am not sad. I am happy. I live a full life, with wonderful friends, great
family, travelling, hobbies, nice clothes and pretty makeup and fucking awesome
wheelchair gear. I am perfectly okay with being an EDS baby. Sure, there are
bad side, a shitload of them. But I am not gonna be stopped by that.
I live with
chronic depression, caused by EDS. And I am not gonna be stopped by that
either.
We are
normal people. We live normal lives. We are happy, we are sad, we are mad, but
we’re not mourning the fact we’re spoonies like society expects us to. WE ARE
NOT WORSE. We are just as worthy as an abled person. It’s that simple.
I refuse to
be told I am supposed to be mourning. Yesterday I got officially diagnosed with
EDS hypermobile type 1 or 2. An I am celebrating, cause official diagnosis
equals a whole lot of benefits. And yes, I am gonna have heart issues, I am not
gonna walk again, I am gonna be in pain my whole life and I am not gonna be able
to be who I wanted to be AKA teacher and interpreter cause I’m losing hearing
and my hands are in very bad state already. AND I AM HAPPY. It’s May. There are
flowers, I have lilacs in my room and I can feed my bunny fresh grass. I am
going back to Uni in September and I have a date next week. My hair is long
enough for updos and I bought killer pink-ish nail polish. I live. I am gonna
live. I am gonna live till my illness kills me, but I am not gonna be sad. I am
a person who happened to be born with a bad gene. So is my sister, and so is
lots of my friends. And this is not who we are.
I refuse
for it to define me. I do define myself as a wheelchair user or EDS baby on
social sites, I do, just as I did with BPD and autism before my official
diagnosis. It’s simple – easier to find people like me this way, easier to
connect. That’s why I have EDS in my tinder profile – as it made me meet a
great girl who also has EDS and we probably would never meet irl among
thousands of people on streets of the city. But I refuse for my illnesses to
decide what I can or cannot do or who I’m gonna be. You can bet your ass I am
gonna try that art school before my hurting hands stop me, and I’m gonna try
interpreting before I go deaf. And I’m gonna wear short sleeve even though I
have huge scars and I’m gonna go out and laugh and smile even though – and BECAUSE
– I am on a wheelchair.
And I am
not gonna cry cause this is who I am. But there are going to be spoonies who
cry. Who mourn. Who are sad and depressed BECAUSE they’re ill. But then they’re
gonna go out and be happy. And that’s what I want all you abled folks there to
understand. That is what you cannot fathom. We are just as whole as you, and we
are just as able to have a range of emotions not connected to our disability as
you do.
Cause guess
what? We’re people too.
*mic drop*
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)