deafblind rant

Warning: This blog depicts a disabled person being negative. Read
at your own risk.

I am a fire, my body boiling, ready to explode, but there's no
outlet, so the pressure grows.

My stomach is queasy, my head spins, my hands shake. I want to
throw my braille machine out the window. At $6,000 for an old,
outdated device, I hod back. Where do I send the anger, the hurt,
the betrayal?

This is my life. Again and again, a constant battle. But did you
know...?

I never asked to be born. That had something to do with my
parents. I didn't know about that little thing in my genes, the
mutation that would make me a monster. I didn't ask for this!

I have never said "why me...?" If it wasn't me, It would have
been someone else. I don't want this, and I don't want anyone
else to have it.

It sucks. It's a constant battle, fight, war, it never ends. I
flash a pretty smile, say, "Oh, gee... that's too bad" and keep
on ticking. I'm the Deaf Prom queen, three years in a row. Who am
I to cause trouble?

If you believe that, you don't know me. This is not a nice
message. It is called a rant I throw the emotion into my
fingertips, and maybe I'll stay sane... for another day, until
the next blow.

I did not ask for this!

So you run some kind of agency or office that serves the public.
Maybe you are a doctor at a major medical center. You love and
admire me, you swear up and down. But you are very sorry, you
can't afford to pay for my interpreters. After all, this isn't
actually for an appointment. You don't tell me any of this. You
are careful, and you get away with it. After eight or more years,
I'm no longer part of your presentation. There's nothing I can do
about it.

Maybe you are a local doctor. You feel my need for interpreters
is an undue burden. You say you are exempt from that, or you just
don't do it. People work on my behalf for three or four months,
before you get the message and let me come for an appointment.

Maybe you work in the front office for this doctor or service
provider. You miss the ball, don't send in the request for an
interpreter. I leave the office, defeated, and it's another two
months for my appointment to happen.

I didn't ask for this! I didn't ask for these disabilities. I'm
merely seeking the same service that normal people receive. Valid
people don't need interpreters. I know I'm invalid, and the fight
continues.

Maybe you work at an orthopedics office where they make and sell
leg braces. I need a new pair of Ankle-Foot Orthopedics. Medicare
approved this request three months ago. Yet I haven't been cast
for the braces. Why? You don't pay for interpreters. Your staff
says, "Oh, we don't do that kind of stuff." I can find a new
place to get my braces, and then you are off the hook. I don't
want you to get away with this, so I fight.

Or maybe you are a landlord who gets money for renting to people
with disabilities. Maybe it took you two years to replace my
sliding back door. I open the door to discover there is no
screen. I write you an email, but you dismiss my request because
all correspondence must come through the portal. But the portal
is not accessible for my technology. I tuck my tail between my
legs, have Dad ask for the screen through the portal. Only valid
people can enter a portal.

Maybe you offer services with people with disabilities, and you
are having a Summer leadership academy. I've been searching for
this kind of training, and I'm super excited to apply. But you
reject my participation. You send me a letter of denial stating
the reasons if lack of transportation. There is truth in this. I
can't ride a general bus or use paratransit. You also say you
can't provide personal care assistance. I re-read my application.
I didn't ask for a PCA. I didn't ask for an SSP. I requested two
tactile interpreters. I'm too much of a freak even for agencies
who work with people with disabilities.

I'm down to a simmer now. My arms are killing me because I wrote
this blog. Nothing has been accomplished. The war goes on.

Angie C. Orlando

July 2019

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