Monday, July 26, 2010

Celebrating yesterday, today, and 25 feet in the future

Wow. These are incredible times.

Denver is home to the one and only professional group PHAMALY, an ensemble comprised completely of people with disabilities. Each year they put on, among other things, a musical. Last year it was the Man of La Mancha, where I learned about dreaming, and living for, the impossible dream. This year they performed Beauty and the Beast. One may think, sure, Disney, Beauty and the Beast. But this group does everything in a slightly different context. In one sense the viewer forgets all the actors have disabilities, and in another sense, the production gives a unique point of view from the standpoint of people with disabilities.

(skip this paragraph if you're still planning to go to this production) The producer changes things a bit - the prince in the beginning is spoiled because he was born blind and his parents abandon him. So there is "no love in his heart" - why would there be? The Beast can see and wants to return to "Be Human Again," and in so doing, does become his human self again - the self who cannot see. And there is so much more added to this production that is unique to disability and brought me to tears. It's about being different, feeling like one doesn't belong - it's not about the pretty Disney stuff.

It's the 20th anniversary of the Americans with Disabilities Act (ADA). That's the biggest piece of civil rights legislation for people with disabilities. Sure, we have a long way to go. In 2008, the ADA Amendments Act was passed because everyone was confused - what does "disability" really mean? And there is still exclusion and discrimination - lack of monitoring parking spots, old curb cuts that need to be redone, interviews canceled when it's discovered an applicant uses a wheelchair. So many of us encounter these things.

But we have curb cuts; we have parking spots; we are working on employment. We are no longer invisible - people with disabilities can now be seen in society. It's exciting!

25 feet in the future.
Today I spoke with a pharmacist in California. Saturday I start a newly approved medicine desigend to improve walking speed and strength. Before then I need to time how long it takes me to walk 25 feet, so I can compare. For some people the medicine is amazing; for others, it's good; for others, it doesn't do much. For Beth? I'm hoping for amazing.

And so, why try this, since I still won't be running? The logical side of me says if I can walk a bit more and a bit faster, my leg spasms won't be as bad, since not walking enough causes spasms to increase. But beyond that - there's much more. Why not? If it doesn't do much, then I want to have tried it. What if it does a lot? It's a quality of life thing. For others, the gain in walking wouldn't change their life much. But for me? Absolutely - this I can't really explain.

Some might say prayers that God will have this medicine help me. But that doesn't fall in line with what I believe. God is there, however the medicine works or does not work, with me on the journey, not directing it.

God - there on the journey as we, people with disabilities, strive for inclusion, a level playing field, acceptance.

God there yesterday as I watched this miracle of people with all kinds of disabilities come together to end the show. It was unique and very powerful.

Continuing various journeys.

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