Transit Dialog: I am a PWD, And I Am Angry

Originally published on Transit Dialog, read full text here.

? ?? ? ???, ??? ? ?? ?????
?? ??? ?????????

I am a person with disability, and I am angry

You say you care about me.
But when staying with me becomes inconvenient, you leave.

In your mind, I am a beacon of strength.
But the moment I fall apart, you berate me for my “weak attitude.”
You communicate the message that I’m not trying hard enough
to meet the standards of the world.
A world built by you, for you.
A world that serves you well, if you would do “so and so,”
But even if I did “so and so” I would still not have what I need to thrive here.

For years, I struggled to fit into a system
designed for people like you –
People who don’t have conditions to factor into every decision they make.
I have been forced to tailor my life just so I can do the same things you can,
small things you take for granted every day,
as simple as going out with your friends,
having a meal,
taking a bath,
picking up the phone to say hello to a friend.

You think that building a ramp in the street
or setting up a special cab in the metro rail
or giving me a tiny discount at restaurants where I can barely afford to eat
is giving me service.

You even go so far as to call yourself “inclusive”
for thinking of these “solutions”
to a problem that’s much bigger than you can conceive.

While these help, they barely touch the heart of our struggle to fit in,
let alone actually live.

If I finally land a job that pays me a half decent salary,
after a hundred rejections from people who doubted my ability to work,
you think I’m just as financially capable as you.

If I manage to put up a business of my own,
you think that I am wealthy.

But that money is not entirely mine to spend or invest
on things that will make my life better or more comfortable.
A huge chunk of my money goes straight to the things I need to survive:
Medication, hospital visits, therapy.
Things you’re lucky you might not need.

And when tragedy strikes, I am most vulnerable.
I need help with many things.
So many people want to be helpful,
yet they do things that have the opposite effect.
Instead of teaching me to thrive, they lock me down to “protect” me.
They have reduced me to an infant incapable of meeting its own needs.
They have undermined my decisions and made me feel like my thoughts don’t matter.
For much of my life, this is how I lived.

I’m in a perpetual romance with uncertainty,
having embraced the beauty of not knowing what happens tomorrow,
so I try to live each day to the fullest I can manage
with all of my limitations.

Every day is an exercise in acceptance
that no matter how hard I try,
I cannot do everything people expect me to do.
Sometimes I will be inconvenient,
and no matter how harsh and biting that sounds,
that is the reality of my life.

Funny that I must apologize
for doing the best I could with what few options I had,
because I was born this way,
or because I developed what I now have.

I’m sorry it disappoints you.
I wish there was something I could do.
But there isn’t.

I am a person with disability, mental illness, chronic illness.
I am remorseful. I am short on hope.
And I am ?????.