on "allies"
00:24
A/N: Unedited post. All mistakes are mine and I'm sorry.
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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.
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