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.
***