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 "allies"

00:24

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.

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.

***