ableism

on giving non self sufficient folks a voice

03:18


There comes a time I wonder, really really Wonder, why am I an activist. Why do I give huge part of me to strangers on the internet. Why do I out myself, tell you everything about me. When like 99% of you either do not care, or care from a completely wrong standpoint, seeing me as nothing as a freak and short time entertainment.

Well, the thing is that here, on this forgotten part of the web, I get to speak for the most forgotten. I am the voice for non self-sufficient disabled people who will never tell you all the things I’m telling you – just because in other ways, we can’t.

I ditched tumblr. I’m gonna give my address to friends and say goodbye. Why? Cause I stopped doing good there, and harm was done to me.
This is not any huge thing, or tumblr drama, so if you’re here for that you can with safe conscience close the tab – I’m not gonna say anything shocking. What I’m gonna talk is about how reality as not self-sufficient person looks like. How everyday looks like. You didn’t see it on this blog, lost in topics I thought more important. In all honesty – they are. But I am just so so tired, so please take a moment to read.

In reality, everyday, we are spoken over. By more independent disabled folks even, or just, like all of us spoonies, by abled people. I heard so many times “I am disabled too so I’ll say what I want”. And okay. Go say whatever you want. I can’t make you change.
What I can do is tell you my truth.

You open my page, whether Instagram on tumblr or whatever else, and you see a smiling, glamorous Alex. Face in makeup, colorful clothes, heels. You read about my travel, my last trip to cinema, my new shopping. You read about me being excited about uni.

Well. That is one side. Side I want you to see. In any shoot you see, behind my smiling face in hip wheelchair, is my sister typing the message under the pic for me when my hands won’t cooperate. There’s my mum helping me sit on the toilet. There’s both of them holding a bowl when I puke in the mornings. They fasten my bra, hold me up so I could do my makeup with all assistive devices in the world. They push my chair cause wheeling myself on non-automatic thing will break my bones or dislocate my joints. They check if I breathe cause I took so many pills and went to sleep not to feel bone pain reaching 10. There’s a whole shelf of meds and whole team of doctors. There’s a list of prescriptions longer than all my job applies.

There’s a paper I just got stamped as “completely unable to work, completely unable to function in society without everyday help.”
Guys. I’m 22. And I cannot take a shit without help.

But I am lucky. First, I have good days like ones you see, when I can even do my hair myself and go out without passing out. I am coherent – I can speak clearly and I even sign. I am deemed sane, which means my medical consent (usually) counts. And I have a blog where I can speak up.

If you have disability, you’re valid. You should have a voice, and your voice should be heard.
But please, make space in the community, and please give voice to folks like me.
Who won’t work. Won’t be useful. Will never leave alone, will never be independent. Will never make money for themselves. Will be family-tied and so will never be able to live as who they are – either trans, gay, or do the work they want to do.

You know, my lifelong dream is being a wheelchair bound cam girl. Or wheelchair bound porn star. I love sex, I love talking as sex-positive blogger and activist, I love telling you about disabled sex. But I also want to show you.

Well, here’s for dreams to never come true I suppose.

If you walk, don’t speak for those who can’t. If you see, don’t speak for the blind, if you hear don’t speak for Deaf.
I can only speak for myself, and I can’t even speak for all EDS folks! I’ll never try to say a Deaf person I know better their struggle – cause I don’t.

So why do you think you know better how I feel? Stop.

Maybe if some of you tried to listen, you’d hear totally awesome things! Cause we, not contributing to the society people, are awesome.

And I feel bad for those who will never know us, cause their prejudice won’t let them.
***


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.

***