Sunday, August 25, 2013
Failure is a possibility; surrender never is.
My neurologist awkwardly laughed when I told her I was going back to college in a few days. I'm constantly spinning and in a ton of pain without medication, and for unknown reasons I have no more reflexes in my legs and vestibular ocular reflex. She says I need another MRI, and we're going to work out a plan for medication to hopefully raise my energy levels and concentration abilities through the neuropathic storm in my central nervous system. She doesn't think I'll be able to handle school right now, she didn't say that, instead I got a
"Well, good luck with that."
I know there's something very wrong still. But I don't think it's curable. Considering my track record, any more experimental surgery will likely make it worse, and take more life away from me. In 2008 I dropped out of college with a 4.0 to undergo the first round of chiari surgery. It's been five years of that. Five years of not being able to build up any momentum in life, becoming trapped in others lives, feeling like a burden and hating myself for needing help with everything. I'm finally free, living independently in the city despite my disability. I use a power wheelchair for long distance transport, I have my own apartment through subsidized housing, and am having attendant care services set up through the government so i no longer have to put pressure on friends and family. I can go to school again finally. I don't even care how sick I am still, I'm not contagious, and I can take a lot. I just want the chance to get out during the day and feel like I'm where my life would have been had this shit never happened.
I don't know what going to happen to me or my future, but I'm glad I don't. Just a chance is enough to keep me going. A chance to feel whole.
I'm sorry to anyone I've hurt in this process. I appreciate all of the help I've gotten to get here.
Sunday, August 4, 2013
The Importance of "Disability Pride"
Tonight while eyeball
waddling through the public wonderfucks of facebook I came across a post on the
“Disability Pride Philadelphia’s page.
The admins unearthed an article written by accredited internet guest
blogger Edward J. Heaton, titled “stupidity rolls on”, the level of profound intellect of content could be grasped within the first sentence:
“Just what the !#$(@#$?! is
“Disability Pride” and, more importantly, why should we be throwing a parade
for it?”
Heaton’s dispute is that a
positive event such as a parade or festival should not be held for a negative
aspect of a person’s life, supporting his argument purely on semantics of the
word “disability”. What I find funny is
that myself and friends have said pretty much the same thing:
“Am I really “proud” to be
disabled???”
As much as we’ve said that,
we’ve never argued that they should cut funding and not celebrate. That’s like saying “Our lives suck, so no
matter what, we shouldn’t try to lighten up and have fun.”
Another conclusion that
Heaton puts forth is that since there are so many cross disabilities, having an
event for all of them together is futile because there is no
“commonality”. Many agree with him; and there are not many general broad spectrum “disability” events being held. Possibly unrelated, but there
are also no big wave united movements going on presently to change barriers that
all of us with disabilities must face, especially oppression on the social and
socio-economic sub-levels of living. We
are the largest minority, and we are the most persecuted. Overcoming suffering together is way more
bonding than sharing a favorite sports team or a dislike of the Twilight
series. Also, saying that because there
are different disabilities that they don’t belong in the same festival is like
saying that Latin Pride Philadelphia has too many different countries involved
for everyone to be considered the same ethnicity. Just because individuals do
not share a culture does not mean they do not belong to the same community.
You might be thinking that
I’m biased and writing all this because my band got to perform at Disability
Pride Philadelphia, and afterward was asked to play at Disability Pride New
Jersey. Well, you’re totally right. Do you know how many people with disabilities
turn to art and music for coping?
Many. Do you know how many venues
there are accepting to disabled artists? Almost none. When we play at local
bars and music places around Philadelphia people either stare at me like a
make-a-wish alien or drink away their attention and get angry that I’m not
performing Pat Benetar covers. Stages
aren’t even wheelchair accessible, I have to be helped onstage for every
show. Not only having an accessible
accepting venue to play at, but one where there’s going to be a large crowd of folks
who can fully appreciate what you are doing is a super-yay for the talented
creatives of crippledom.
Ok, but what is the point of
a parade?
I’d love to go on a profound
literary march here, but I think it’s stated best with just saying: parades are
fun; we need fun shit to do.
Heaton says
“When I was growing up in
the 1960s and ‘70s, there was no such thing as “Disability Pride”. What I and
my compatriots growing up have pride in was achievement in spite of the
disability.”
I totally agree. There’s no pride in adult diapers and
medicine pumps. We need not to focus on the disability itself, and perceive this
as a just celebration of life.
Unfortunately “achievement
in spite of a disability” does not fit as well on a t-shirt,
just sayin,
and just because it doesn’t,
doesn’t mean that it does not deserve funding and appreciation.
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