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.
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.
***
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.
---------------------------------------------------------------------------------
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.
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)