It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Monday, May 10, 2010

Freedom is...

On Wednesday at OOO someone mentioned that they had seen this documentary on public television where someone interviewed people of various backgrounds about their personal definitions of freedom. I don't remember if they were famous people or not, although I imagine they weren't, or if they were from different countries or not, although I imagine they were. Anyone see this thing? All I remember from Wednesday night (I'm depressed, remember) is that this documentary made quite an impression on my friend, and she in turn made quite an impression on me. Nevermind I can't remember a single word she said.

I knew instantly what my definition of freedom is, although I did not bring it up because I would have gone off on a thing. Quite frankly, I can't remember a word I said either... Anyway, I'm choosing to share it here.

Freedom is...

The wind blowing through my hair.
[FYI this picture, left, is from this past June in Chicago at AYS, not from DC, but see, wind in my hair :D]

Freedom is the ability to get into my chair and GO! Whenever and wherever I feel like. Freedom is the ability to turn up my ipod so loud I'm going to lose hearing (an acceptable consequence) and the ability to sing at the top of my lungs while I'm whipping top speed down the sidewalk towards my destination. I've had my Jazzy for 7 years and I have never and will never lose that joy that comes with passing other people by, and the joy of how good it feels to create your own wind on a gorgeous spring day (we've had a lot of those lately).

I was going to write a Thankful Thursday a few weeks ago, because it was on a Thursday during that time where I was still barely "functionally non-functional" that I woke up super early and anxious and decided that I just wasn't going to school, because I just didn't want to. It took 2.5hrs and 3.5 episodes of Grey's Anatomy for me to be able to drum up enough sheer willpower to drag my butt out of bed, put some clothes on, and still get to class in plenty of time.

I remember I rolled just outside my building (I live about 1mi from school, or a 12-15min roll) and stopped to detangle my headphones and set myself up, as I always do, either just outside or in the lobby, flipped down my sunglasses, and TOOK OFF down the driveway. I'm not even sure I was all the way down the driveway when I smiled and thought
"Thank g-d for ipods. And thank g-d for old Grey's Anatomy DVDs (THAT was really what it took to be able to get to the point where I could reason myself out of bed). And thank g-d for my Jazzy, my freedom, my ability to get around."
I often think about -- especially on bright and sunny days -- the fact that in Maryland, Medicaid will not pay for a powerchair if you are in a nursing facility. 'Cause, you know, where are you going? If you're leaving on an HCBS waiver, they have this thing about not delivering it to you until the moment you're discharged. G-d forbid something goes awry and you're still there, can't have that.

I think about this because there are a ridiculous amount of nursing facilities surrounding me, one as close as 2 blocks, and I think about how every time I rolled into one, people would eye my chair and want to know how I got such a beautiful thing. Doesn't matter how much dirt is caked on, or how many scratches and dents there are (it's well worn). When I said I have private insurance the whole group would look forlorn.

So lately I think about this everyday, because everyday lately I've spent several hours willing myself out of bed, but everyday, eventually, I put on my headphones, flip down my sunglasses, and roll down the sidewalk to somewhere. I think about the freedom I have to roll down the street, and about how great it feels to have the wind blow through my hair, and I long for a time when people don't have to fight so hard to have these feelings too.


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