ableism

on acessibilities

04:24

Today, guys, I’m gonna keep it short. We have several stuff to talk about, thanks to people messaging me about this blog. And me? I am mad and I am bitter – so the usual.
Let me start with my fave one.

I hate abled people.

If you ever used the disabled parking spot, this post is for you specifically. Offended? Suck my dick.

It all started with my hands going bad. I used to use my laptop for everything, as writing by hand became impossible about a year ago. But hey, we live in the age of internet, so I’m gonna be fine. Right? Wrong.

About a month ago I started having trouble typing. On a good day, after twice the dose amount of oxy, it was…kinda…possible. Today, for example, I’m typing with my fingers taped and after what I think was 40mg of oxycodone, and later some blessed soul will beta my typos. Team work, guys.

The thing is, I’m starting uni soon, and while I’m gonna study most classes at home, there are two I’m gonna attend. And I cannot take notes.

Along with mum we decided to buy me an ipad. Ya know, I’ll be able to record stuff, notes are easier done typing on screen, this stuff. Also drawing on better days. But for me and my unemployed single mother of two it’s a HUGE thing to spend 2k on a tablet. Or anything, really. We had our gas almost cut last month and it didn’t happen only cause the guy was a good guy and saw me on wheelchair and took pity. Hashtag wheelchair privileges I suppose.
I have a rich dad. Maybe not insanely rich, but positively loaded. Said dad is abusive asshole too, and perpetual child support avoider. Also tax fraud. You get my vibe.
Yea, you guessed that, I gritted my teeth and begged dad for help. Hence my rant.

You see, when a disabled person gets accommodations, literally EVERYONE wants to use it, steal it, take it away. I got to uni and everyday have to wait cause someone with two working legs is going on my ramp. Someone abled is using my accessible toilet so I peed myself couple of times. People take places in my queue spots. Not to mention the usual, aka parking spots. You get my vibe.

They – you! – want my accessibility and “cool stuff” without actual disability.

So I have this to say to you: TAKE IT. Take my pain, my not working legs, take my loose joints and constant headache. Take my hands I cannot use anymore and my fucked future I dread. Take my inability to get to uni classes and a grocery shop. Take my hand ache from wheelchair. Take uneven pavements. Take it! It’s yours! And then you can also have my cool tablet, my cool chair, my toilets and spots.

Cause guess what? I need it! To live! To survive! Like you do every day without even thinking! To be on the same level as you! And yet I never am, am I? Cause you take everything and then leave me to literally die, refusing my disability level and welfare.
So. Wanna my stuff? Take my pain too.

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One thing done. Now the other.
I do not approve of people who sexualize me and this blog. I talk about sexuality and masturbation and sex FOR DISABLED PEOPLE WHO NEED TO HEAR IT. I write for people who need to be empowered. Not for you to jerk it! So stop messaging me how hot is it that I masturbate. I don’t wanna hear it and I don’t want you. I’m gay, always was and always will be. That means NO MEN. I’m a lesbian and I won’t sleep with you. It’s not the purpose of this blog. Come on guys, let’s behave like adults. I know I’m sexy, you know I’m sexy, we do not need to talk about something that is obvious and established.

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I’m pretty bad lately with my back going worse and since it’s hard to type lying flat in bed I’m not sure when the next update will be. Sorry. Hopefully tablet will let me write more often.

And also, if any if you are reading this and need to talk to me, to just rant, to address something I wrote or not at all, I am available at bitterlesbiangrandma.tumblr.com, hit me up at private messenger. I know some things are not to be said in comments here, so you can talk to me there.

And in the end, thank you for being so warm and positive about me writing this blog. I hope I managed to at least entertain someone, if not teach or empower. It means a lot you appreciate it.


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 my gender being "a wheelchair woman".

17:50


 You know, if usually I’m a mess, then since these last two weeks I am A Mess. I would look for an excuse why I wasn’t writing any posts, but the truth is I’m ill and it’s the best excuse you can have. Chronic fatigue and pain kicked my ass and I caught costochondritis (google it, honestly, it’s an awful illness we EDS folks catch like a common cold. It’s my second one in last three months.) which tied me to bed running on aspirin and oxycodone, so I was in no shape to write. I still am, to be completely honest, but I had to share my thoughts on this lovely topic. Lovely being high sarcasm.

Blowing my college fund completely, I got a Smart Wheels-like wheelchair. I ordered it in February, but it was ready just this Monday. It enabled me to go out much more than I used to, taking the strain of wheeling, which was becoming unbearable on my hands, from me. And I am now seeing the “casual world” (in opposition to the world I saw on rental chair, only hospitals and clinics, and once a park) from the perspective of a person on wheelchair. And oh do I see things.

Month ago I took part in wonderful interview, the one I mentioned before, on topic of disability in queer women. Among other things, my interviewer said one things, that I now tested very painfully in reality.


Women [whether cis or trans] on wheelchairs [I’d add that with visible disability in general] are perceived as a completely different, new gender. Gender that is robbed of any sexuality, is completely non-sexual. They’re no longer women, they’re a different species that is seen as unable to be understand. [paraphrasing, obviously, as I do not possess any transcript of the session]


And we are. We totally are. I saw it before, to less extend, but now I see it in full light.

It can be small – like total lack of male gaze on us ( meaning sexually objectifying gaze), sudden lack of romantic proposals at all, no dates, no interest in us. I’m a fairly attractive young woman. Hell, I’m gorgeous. I’m also fairly intelligent, charming, cute, funny. Before my disability became visible, I had people “in real life” crushing on me, asking me out and so on. Now, as a wheelchair girl, the only people interested in me are people I met online, who got to know my personality first, before meeting me and seeing my body. Men do not stare at me as they did before – which for me as a gay woman is genuinely nice, but still proves the point. I can both feel it, and had people say that they noticed it too.

It can be a bit worse – as people treating our bodies as a public property, touching the way they wouldn’t touch an abled person, asking inappropriate questions. As doctors seeing out bodies as sexless. As health providers suddenly forgetting we have sex lives. As people being confused we are sexually active or even not-asexual at all.

You probably wouldn’t grop a stranger woman’s body in public, would you? I had people, regardless of gender, who did, who even went as far as casually touching my boobs. But I shouldn’t mind, should I? After all I’m not a sexual being at all so why would I mind someone touching my private places. (I wanna specify: I do not think breasts are sexual organs, they’re for babies. But in general, they’re perceived as a rather intimate part of the body.)

When at the first time I applied for disability, I got a doctor who had no idea what EDS was, and from just looking at me told me I’m a nice girl and should go marry and have babies and not “want to” be disabled. The second time, the same doctor, I had a card from my usual doctor providing all the details on my illness and how it stops me from various aspects of life, as studying, working, driving a car etc. This time? I was not a nice girl anymore, I was just a broken body. The difference was literally so palpable my dad thought we both went crazy suddenly cause it cannot be real.

It can also be my favorite type of ableism aka “I could never date a girl on a wheelchair”. Or even better, followed by “you’re cool tho, no offence”.

No offence taken, obviously you cannot see me as a sexual being, as a hypothetical girlfriend, as I am made of metal pieces and wheel gears and I do not possess a sexual body at all.

You see, I was only out a couple of times and I have more than a dozen of these stories to tell. I am literally the other gender now, I am invisible at best and outward hated at worst. I am not seen as a woman, as a future mother, future teacher, future lover, no, I am sexless, I am completely washed of any sexuality.

You see, I’m a rape survivor with severe PTSD, I am also accidentally a person on asexual spectrum, whether those two things are connected I’m trying to find out by therapy. But even I, not being terribly enthusiastic about sex, do actually mind this. Very much.

I am a woman. And I want to be seen as one. I want to be seen as a sexual being cause I am a sexual being. I am not fond of being treated as a little child.

So to y’all who could never date a girl on a wheelchair. Look at your reasons why so. We’re people just like you. Girls, I am just a girl, just like you. I am sexual like you. I wanna have sex like you – with you. I’m not a different gender.


I’m just a human being. Extremely tired, bitter human being.

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On 28th of July I turned 22. I can't believe I'm 22 and still have to blog about this shit. Two decades of my life and we still have ableism. Yikes.
Anyway, happy birthday to me.

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)




asexuality

Answering my favorite ques

05:19

When you’re visibly disabled suddenly your body becomes a public property. For me, it was a shocking stark contrast – from being spotted publicly mostly for my blue hair or colorful tattoos, earning smiles, mostly encouraging or gently amused, I switched to being uncomfortably stared at, to uncomfortable embarrassed half smiles in my direction, to surprised gasps sometimes when I stood up from my chair. Before, I was just a young adult navigating the crowd, now, I became an one person public performance.

My first week on a chair, I cried constantly. I was totally unprepared for what came at me – not only was I really sick, not knowing back then what was it I had, I was in lots of pain – and I became an aim of critique and comments, not EVER nice.

Third day on my chair I went to my psychiatrist, wanting her to adjust my meds as I was getting more anxious than ever, and to tell her update on my diagnosis, that back then was the fact I don’t have brain tumor. Which, unarguably was great news for 21 year old scared shitless she’s dying cause suddenly in a month her legs stopped working like they should. I was hoping to confide my fears in her, hoping that a medical professional can help me in my really hard place.

What I got was more critique. I was told I am worse by being on a wheelchair and I should do everything I can to walk and not be like “those people”. The thing was, I was already those people, I was a disabled person. Too bewildered to fight for respect, I just sat there, and that was when the question was asked. My now favorite question, the question that made the idea about this blog be born, the question that changed my approach to disability.

“But if you’re on a wheelchair then how are you gonna have sex?”

Because I didn’t answer then, I am gonna answer now.

When people ask me about my sex life, that is ableist as hell – because you wouldn’t ask abled person how they have sex, right? You wouldn’t doubt they CAN have sex. But you ask me, just because some parts of my body are working differently than yours.
When strangers, or friends, ask me that, my answers vary from straightforward “fuck you” to “why, are you interested?”, cause as we already stated I am an angry bitter person.

But to be serious for a while here.
Disabled people have sex just like any other people. We can be gay, straight, ace, trans, you name it we have it. I am a sex positive panromatic asexual. What does it mean? I do not feel sexual attraction to ANYONE, but sex is fun so I’m willing to have it, with EVERYONE.
I am open to one night stands and I am open to relationship sex. I am kinky as hell and I masturbate a lot. All that my illness changes is that I am in pain, and parts of my body are fragile. That is all. Everything works down there if you were wondering.
I’m telling my own story as I don’t have rights to anyone else’s, so hear me out: I am a very sexual person despite being disabled. And most of us are. Wheelchair people have LOTS of sex. If you are attracted to the person on a wheelchair GO FOR IT. Ask them about details, and they’ll tell you, and you’ll make it works. It’s that easy.

We are PEOPLE, guys. We’re not some ethereal beings unable and unwilling to have sex. We’re just people.

So, answering my favorite question. How am I gonna have sex? HOWEVER I FUCKING PLEASE.

What we need here is awareness. More open speaking about sex. Ending of slut shaming and ending of desexualization of disabled people. Because people WILL wonder how we do it until they are well informed. So we need to inform them. But it is in no means our responsibility to make them understand. They will or they won’t. But they need to KNOW.

This being said, if you’re low on spoons, tired, or just fucking pissed, the “go fuck yourself” answer is well suitable as well. You take care of yourself and your needs cause spoonie life is SO GODDAMN HARD, you don’t need to waste spoons on ableist if you don’t want to.

I will waste mine, cause I am mad and I want change. I want change for my future kids, for my sister who was shamed out of accepting her disablility, for my friends who suffer with me, for strangers who have shitty life. For me.


I hope it was informative enough. If you still have questions, hit me up or just google “disabled sex”. We live in wonderful world where google has an answer for everything, you know.