ableism

On being nice

23:51

On Monday, I was assigned a committee meeting to finally get my disability papers. Like, you know, parking spot, welfare, refund to my wheelchair and stuff like that.

I dressed all nice, but not too nice, took my documents, put on all 7 braces I needed this day, hopped to the car and off I go. And that’s where the tumblr-worthy drama started.
I took my dad with me as a caretaker, even though he is, to be frank, a shitty one. But no one else was available.

So I enter the doctor’s office, get usual checkup, doctor is being an asshole but it’s nothing I didn’t expect, I start to explain I have EDS but I don’t have papers yet for it cause I’m waiting and…

“Get up from your chair, I know it may hurt but I want to see you walk.”

Well, you see, as I may limp a bit around house, where I know my mum is always next to me to catch me, I do not “walk” anymore. I had, and sadly still have, my both ankles twisted, my knee which likes to move on its own dislocated again, and just before going out my hip popped off, which not being dangerous or anything was still quite painful. I knew standing up meant falling down, and was sure neither Dr. Asshole or my dad wouldn’t catch me.

“Um. I don’t stand up.” I said. You see, I might been a bit defensive on this point, but nothing to explain Dr. Asshole’s later behavior.

“What do you mean you don’t stand up, I want to see you walk.”

“Well, I don’t. I don’t walk.”

“Move to the sitting place then.”

So I did, holding up on my better leg and better hand, arranged my skirt nicely around me and I sit. Doctor is wincing. I move back to my wheelchair.

“Well I’m gonna need a psychiatric evaluation. I don’t believe you. You may be faking.”

At this point I look expectantly at my dad but he does nothing. I remember I am supposed to be nice to get the papers I need, I bite my teeth so hard my jaw pops, and leave.

I go to the bathroom and that’s where it hits me.

Fuck being nice.

I do not exist to make abled people feel comfortable. I do not exist to make abled people feel good. I exist to make myself feel good. And who even said I need to be nice in the first place? Because I’m a woman and he’s a man? Fuck that too!

And, you see, I am not a person to be quiet when angry. So I leave the bathroom and I start yelling at my dad. I see the office’s doors are open and I yell even louder that the whole committee is a bag of unwashed dicks and Dr. Asshole needs to get his head out of his ass. And that I demand to be explained why psych evaluation.

The doctor leaves his office at this point. He tells me to be quiet and that I am being inappropriate, that I could fail a complain but this is not a time nor a place for me to shout.

So I shout some more.

At the point that I leave, he was called a fucker, an ableist and an entitled idiot (all true). My dad comes back to apologize, and, to be completely honest, I stand on the pavement and cry.

But my point is: disabled people don’t exist for you to feel good. We are not required to be nice. We have all right to fight for themselves. And we have all right to call you out on your bad behavior.

Was I rude? Probably, yes. I am not even gonna put it on BPD, I was just very mad and very tired of being walked over. But am I proud of myself? YES. For standing up for myself. For refusing to stand up.

So – fuck everyone who tells you to be nice. You are not required to be nice. Honestly? NO ONE is required to be nice, whether abled or disabled. You do not exist to provide pleasant experiences to people around you.

Be bold. Scream. Stand up for yourself. Be loud, take space. Don’t let them shut you up. YOU are who is important and YOU is who is worth fighting for.

So fight.


***

ableism

On hapiness.

20:50

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*

chronic illness

on being told "it's normal".

11:42

I feel like I should probably wait with saying that for when this blog has more followers – or any followers for that matter. But I can’t hold it in. I am ANGRY.

I came back from yet another geneticist saying that yes, it’s probably EDS I have, but they can’t be sure, cause I apparently only show symptoms since I was 16. And I cried so much, cause I literally have ALL EDS symptoms, and the ignorance of doctor’s on the topic of rare illnesses significantly holds my progress back. So I sat my mum, and gave her a list of collagen disorder symptoms, and asked her if I had any as a kid.

And my mum was like “All of them. But we were said this is normal.”
And I fucking flipped.

How harmful the trend of saying “she’ll grow up from this” or “it’s normal for a kid” is. I was born with two dislocated hips – a typical EDS thing for babies. My parents were told it’s normal for a baby to be born like that. Then later, I kept dislocating joints, I was almost always in some kind of cast or whatnot, but what doctors said? She’s fragile built, she’s delicate, it’s normal.

I have heart issues. I probably have POTS. I was told “it’s typical for menstruating teenage girls”.

I have ongoing depression since I was like 6. “Emotional female”.

So, I scanned myself. I asked myself: “what things here you have but thought are normal and everyone does?”

Bendy fingers (I can do 90 degrees flip back with one of my fingers. DISGUSTING.). Chronic headaches. Poor eyesight. Always cold. Too delicate skin getting red easily. Legs pain (not connected to joints pain), feet pain. Muscle aches everywhere. Exercises making me worse. Constant fatigue. Trouble breathing. Arrhythmia and suffocating feeling when in pain without connection to actual heartbeat issues (idk how to phrase this one, sorry if it’s wrong.).
And on. And on. And on.

I never told my doctors that, cause, obviously, I thought it’s not connected to my loose joints, pain, and my chronic illness problems in general.

How many more people like me are out there? Who never knew they can NOT BE in pain, they can LIVE NORMALLY, that life is not that fucking hard, they’re just ill?

It’s so fucking harmful we don’t talk more about it. That no, life is not supposed to hurt. You can get help. IT’S NOT NORMAL TO BE HURTING.

I’m seeing another doctor on Wednesday, and I hope this one will listen to me. And I’ll keep looking, I’ll keep fighting for an actual diagnosis, for official diagnosis, even though there is really no doubt here I’m an EDS baby. I’ll fight for a wheelchair refund, fingers braces refund, wrist braces refund, SO MANY FUCKING REFUNDS GOOOOD.

But, most importantly. I am gonna spread awareness. Because I’ll be damned if I let other kids and adults suffer like I did for almost 22 years.

If there are any EDS babes like me reading this, please let me know? The more of us, the better.

***

ableism

On having to prove your worth.

03:45



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)