ableism

On casual ableism (and Alexa's existential crisis)

17:40

I wish someone could sit me down and explain to me in easy terms why I reach heights of productivity at 1am when I have to wake up in 4 hours. I really wish.

——

As you probably noticed, despite it being a while since last post, the blog got total theme remake lately. So it's not exactly the fact of me being busy that kept me away. Sure, that's true for the first part of the January, when I had been finishing my midterms, but since the beginning of February I was basically free.
But I kept having doubts. As you know if you follow this blog regularly, my family is not exactly perfect. And abusive family can mess with your head pretty badly. And so I let myself believe for a while that what I have to say doesn't matter, and even more - that I have no right to say my opinion, as I'm in the wrong. In the wrong about my rights, my right to live, to be respected. That I should just shut up. That I have no right to help and to aids and so I should stop the fundraiser and hide cause people don't want to see me.
Luckily for you I have a bunch of lovely spoonie friends who called me out on my temporary existential crisis and here I am, as good as new. And with suspicion of lupus, currently in diagnosis. I'm not kidding you, guys. My friends call me a chronic illnesses collector. I think my body just really, really hates me. Can't blame it really, with amount of sweets I devour daily…
Anyway, the point is, I felt inadequate and wrong, and since I spend a lot of time on social media, I felt I'm not being a good person. So I tried to educate myself on the subjects I felt I know not enough about, and one of them was racism. Poland is… very white. So I read, and read, and read, and I started to notice things.
My mum is an awesome ally. She always supported me in all fields, when I came out as gay and then when I had been learning about my gender more and more. When I got sick, and then on the wheelchair. When she found out about how I was raped. Always, she was always there for me. And she is a really great, open minded person.
But, I realized my mum is very casually racist sometimes. And here is the thing - she is only on the topics where she doesn't know what she's talking about, and I'm sure I was the same. Like for example about the lack of Black movies out there. And there is one thing that hit me like a truck full of bad metaphors. It's a lot like people who piss me off everyday with their casual, thoughtless ableism.
Example: one of my teachers who keeps saying I need to go out and meet more people, when I’d LOVE TO meet more people but it's just not realistic when you're stuck in bed for 23 hours a day crying from pain and the remaining hour you try to do uni work. And when you live in a place where buses only visit occasionally and ramps are rarer than unicorns. You get my vibe. I am NOT secluded from people because I want to.
But then again, someone who's not in my skin have no idea about that, and they think they're helping. And I appreciate, really, but if I hear the same stuff twenty times a day, at the twenty first time I'm gonna get mad, cause how many times can you explain??? It's just that this 21st person is unlucky today.
And my point is, we need to explain, yes, but abled people - and not only abled abled, but anyone who doesn't have physical disability, should try their best to listen. We all suck sometimes and I know it took me a while - and knowing a Deaf girl I had a crush on - to start really listening to Deaf people and checking my own privilege. And, well, starting losing my hearing slowly. So my point is not to vilify or accuse people, but to try to explain to them - to you - why the fuck we get so angry when they try to help. And why I yell so much. Ooops.
I think that subconsciously until now I thought people who do that are vile. That they do it on purpose cause they're too lazy to try to listen to me. It took my mum to open my eyes, and make me realize that maybe no one ever explained it. Maybe I'm a first wheelchair bound person they ever met. Or first outspoken one. Or the disabled people they did meet were too pissed to explain, the reality I know all too well. I'm not a patient person, but I'll try to be more, cause that one’s on me.
Then again, it takes being comfortable with your disability to be able to educate people and be helpful and not eternally mad. It's been a year in February since I'm on a wheelchair and only now I keep realizing that I'm actually okay. That I'm not broken. I just happened to be different but world where everyone is the same would be awfully boring.
So - listen to your friendly disabled person, and as a friendly disabled person keep in mind not everyone is out there looking to take your rights away. Sure, sadly a whole lot of people are, but some are just uninformed, I think? We have all rights in the world to be angry, but, at least for me, knowing not everyone is out there hunting me down, helped me feel a tiny bit better.

In other news, I gave link to this blog to my English teacher as an example of both my activism and everyday English writing. I'm bilingual and I'm using English much more often then Polish (trust me on talking to my mum who doesn't speak it and halfway realize she has no fucking idea what I'm saying…), but majority of my work outside of activism is a WIP and I struggled to find finished stories, of the ones I know how to finish quickly. And this blog is what I'm a bit proud of, actually.
Why am I saying that? Cause here goes official apology for the amount of swears I use, I am sorry, I have a mouth like a sailor and I am aware of that, I feel my writing style lacking without it, and it's probably a vice on my behalf. However, I do not feel it appropriate to change it in my posts, cause it's genuine, it's how my train of thoughts goes, and that's how I just am, and this blog is to show a real - as much as that's possible online - me. So. Please keep my apology in mind when I inevitably break into cussing next time someone asks me how do I have sex.

Thanks to everyone donating to my wheelchair fundraiser, I'm close to my goal but sadly I have to get a corset and it's urgent apparently, so that's what I'm gonna spend the money at firstly. Maybe one beautiful day I will stop getting new diagnoses and be able to finally, finally get this goddamn chair. For now, thank you for saving my pathetic life, and expect corset photos and maybe more writing if it actually works and helps me sit up more.
Stay strong!

ableism

On one minute friends

22:17

On one minute friends.



Oh how I love I just literally killed the first mosquito of 2017. In February.

But. To the point.
I want to formally apologize for the lack of posts lately. Who would know dying would be so exhausting. I crashed from maniacal episode (I'm a freshly diagnosed, still unmedicated, bipolar person) to depression and I just kinda…stare at the ceiling and wish I could cry.
But while I was hopelessly turning in my bed tonight, I remembered something that might have been a good idea for a blog post. Or bad. You decide.
I remembered when I was 18 I guess, I was writing a different blog, kind of my thoughts on different subjects. We need to estimate here that 18 y/o me was an undiagnosed, traumatized idiot, with the key word here being idiot. I was in pain everyone was saying was a psychological thing after rape, that was also in a huge part ignored by medical professionals around me. I suppose I wanted attention? Literally I have no idea why I did what I did. It's one of those things I can't remember actually doing, but I know I did. And maybe it was the attention thing, or the fact I was highly psychotic back then and couldn't differentiate between facts and reality if I tried, but the fact remains, I was a total disaster.
You see, I cannot lie. If I was a mythical being, I would be a faerie. It's not to say I don't lie, cause of course I do, don't we all? but I suck at it and it's super uncomfortable for me, i can't keep track and I just hate it. I'm this person who'll come out to you and tell you about all traumas 5 min after meeting you (ask Ki, I literally did that to her and we remain best friend). And when I lie, I almost always come clean, and usually try to escape the consequences if I'm to be honest, cause I'm a coward too.
Anyway, I have no idea why I lied on the blog then, or rather colored the reality as some will say. I'm highly suspicious it was the attention seeking thing, but I just…have no…idea?
I wrote a post about my ex high school, the one I was expelled from (or rather kindly asked to leave if I don't attend therapy, which for me is the same thing cause you cannot just blackmail someone with “stop being mentally ill or lose education” ya know?). I lied in the post about how I came out to my peers and that it was the reason I was expelled with a huge BOOM. Which didn't happen. I was asked to change schools cause yes, they minded me being an outed gay person very much (how I was outed is a whole another story, I didn't do it myself either) but they mostly minded my self destructive habits and was “worrying about me corrupting my classmates” I think was the quote? I have no idea why they'd think so, I was suicidal but not making some suicide pacts with friends! That came later? Anyway, I was half happy to leave and half mad they made me, my mum was pissed, and so I was taken from school and moved to another nearer my city, without a dorm so I lived at home, and put into a loving care of a psychiatrist who then sexually abused me, but hey you cannot have everything.
And so when I posted the Lie Post as I'll call it now, I got two comments - one from someone who recalled their days at boarding school, and one, anonymous, from who said was my former classmate.
And I remember two lines. One was “you're living in some kind of illusion” - which was true then just as is now so I cannot really say anything…
And the other “the saddest thing is, we liked you”.
You may think, as I did back then, and even couple of months ago still, that it's kinda cruel. To say thing thing to who turned out to be a terminally ill person. But the thing is, it was my fault, and they had right to be angry I suppose.
And I kept wondering who wrote it. Was it a girl I hated cause she was better than me at literally any conceivable thing? Something I would now admire as a person who is not disabled and has strength to do stuff, and is amazing at them. But that's post-dying-epiphany me. Cause one thing I learned this rainy cold November day was that life is unpredictable as fuck, and holding grudges will get you nowhere. But I think to forgive everyone and decide to learn to appreciate everyone you have to have this major life changing event happen to you. And it's not to say I'm in any way better, cause I'm not. In any way. I just had a fucked up thing happen to me and I see world differently after it.
Was it the perfect girl’s best friend who I always thought was looking down at me and was weirdly condescending- but she wasn't. It was my low self esteem and a victim complex speaking. She was kind. I wasn't.
Was it a girl who was perfect at English and we competed at it which was totally unfair cause as a bilingual person I shouldn't compete with someone still learning? And she was good. I was introduced to English at 4 y/o and listened to it a lot before that. She was just learning at school, and we were the same level. In which way that was fair? I didn't put effort into my English - she did.
Was it a girl who was so ethereally beautiful I couldn't speak a word to her cause I'd stutter? Who I'm still a bit in love with just cause I was then?
Or her best friend who made me realize I was a lesbian, and skip the whole major crisis connected to it, cause she was so fearless in her love to girls, so open, so beautiful. I owe her so much, she made me stop being afraid.
Or was it a girl I was crushing so hard at my abuser was jealous of her and would beat me over her. I think I still love her somehow, that amazing she was.

And you know, my predicted lifespan is 40, and I'm 22 now, so I'm not going anywhere yet. But I want to, in some way, say goodbye to those girls. Thank them. Cause I have a fast paced life ahead me, full of trying to fit a whole life in couple of years. And I think it's time to say goodbye to the past.
And I doubt they'll read it, they'll find a way to this blog. But maybe they will.
So here you go.
Thank you B (what was your real name? We always called you that) for being someone I still can look up to. Thank you Z for laughing with me when I was sad and wanted to die - I'm not sure did you know? Or was it just that you're always so nice? Thank you M for being a fair rival, someone I admire and wish best. Thank you Be for allowing me to learn to love someone unconditionally from afar and showing me beauty. Thank you O for making me who I am now, for being unafraid and teaching me to be so as well. Thank you C for everything, every smile and small talk, oh gods how I loved you.
Thank you P for being the loveliest roommate and caring about me even after I left, you're an amazing person, you're gonna be famous one day, I know it. I hope to see it. Thank you E for being my best friend back then. You saved my life and I love you still, even though we lost touch.
And to the rest, thank you too. For being for me when I needed you and laughing at me when I was sad. For just being friends in a class, you know?

And you may think this post is weird, and excessive, and unnecessary cause who thinks about high school like that? But it's not why I write it, I don't even write it cause I'm ill.
The year I was at this school I was every weekend at home beaten, raped repeatedly and psychologically abused and tortured, and it's not a hyperbolic speech. And when I came back to school for a week days, it turned out my school psychologist I couldn't trust. But the girls were always there and had my back. Even though I was a terrible, terrible person. And this is about that, cause I'm making my peace with the past.

But it's not only that.
This post is about friendship. About people who are important in your life journey even if they're there only for 5 months, or 2, or a day. About kind people who make me want to fight my uneven fight still.
Maybe my point comes across, but if not, I'll make it clear.
When I found out I'm incurably ill, my world kinda shifted? And I'm in some weird change moment now. And I'm trying to learn to be kind and good. To be nice to everyone. I learn how to say thank you.
Learn with me.

abuse

on Orlando shooting.

01:33

 A/N: this post is not edited. I'm sorry for the mistakes but I am too shaken to do it now.

***
You see me here blogging about disability issues, and I susppose you have some image of me already, based on what I write. Whatever it’s good, or bad, I don’t really mind. I’m happy you’re here, I’m happy to make a difference.

And as you probably already know about me from my blogging I am Very Gay. I identify as a genderfluid woman, in a spectrum between female and agender. And I identify as a lesbian. I am an asexual lesbian, and I am proud to wear a label. I rock pinky-red flag, I love wlw aesthetics posts, I am all here for the rising movement of Sapphic girls.

And, being a queer woman, today at 4am I read about Orlando.

And I am scared.

I live in Poland, far, far away from where it happened. But situation here doesn’t make me feel any safer. It could happen here on a pride on Sunday. It could, and I am thankful to all the gods it didn’t. 
But it made me think about the past, and I want to tell you a story.

At age 16 I was in all-girls boarding school in another city, and I first time met an outed lesbian. I fell in love with the label, I finally felt I know who I am, I have a place in the world. I was deep, deep in the closet, but I was me. My friend dated girls, and I was proud of her. Proud of me.

I got a crush on a girl from my home town. We got together. Long story short, she was very abusive. 
She would hit me in places no one would see bruises and force me to have sex with her. She would tell me no one will ever love me cause I’m a lesbian, that I am dirty, that it’s unnatural and that she’s the only person who’ll ever love me. That I’ll go to hell. She would force me to walk kilometers to prove me my disability is not real. She wouldn’t let me sit down when we met. It’s possible some of my joint damage is caused by her.

And she would tell me she’ll kill herself and kill my family if I don’t sleep with her.

I didn’t know then that girl can rape another girl, that forcing someone to sex in relationship is rape too.

She would shame me for who I am, and she make me feel ashamed of myself. She made me hate myself and hate the label lesbian. Because it was wrong. And because she was a lesbian too and I didn’t want anything connected to her to stay with me.

When I broke off, with severe trauma and PTSD, all I felt was fear. I was out to my mum and sister, but to no one else. I hated being gay. I hated the community. I hated everything. I tried to force myself to like men. As you can imagine, it didn’t quite worked.

It took me over 3 years to heal. It took me over 3 years to love myself again. I don’t self-harm anymore, I’ve beaten eating disorder. I’m seeing a therapist every week. And, really, 

I’m okay. I wasn’t afraid.

Till today.

First time in three years, I felt fear that I felt with her. Fear of being a lesbian. Fear of loving women. Fear of being out.

And I DO NOT WANT TO FEEL THIS WAY.

All my love is with survivors and their families, with families and friends of those who didn’t survive. I pray for them, I send all good energy their way. The dead are safe and in better place, but we, who remain, have to deal with the loss. Families and friends with loss of loved ones. We, the queer community, with loss of being safe in our safe spaces.

I mourn for LGBTQIA+ youth, who will now be afraid to go to bars, to go to pride. Who will meet significant barriers in meeting ones alike them, to get into relationships, to find love.

I mourn for those of us who are now afraid to come out, or, like me, afraid to be out.

I mourn for those in bigoted families, who will have to listen or even agree to bullshit spawn by their relatives, just to be safe.

I am with all of you, sending energy and prayers your way.

My best friend once told me my posts here are empowering. I’m glad. But today’s post is not, I suppose. It’s my way to say how sorry I am this shit in the world ever happens. How I love all of you in our community. How we need to stand together.

But it’s also my way to say: cry. Mourn. Be sad. Don’t let them tell you to get over it. Don’t let them tell you “not to fight hate with more hate.” No. Be angry. Hate. Be furious.

Cause we have a right to cry, right to be mad, right to be furious. We will not be silenced.
To all my folks in queer community, disabled and abled alike, I stand with you, and I will not be silent.

And I will cry.


And I will scream till the world hears me.

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*