Monday, April 26, 2010

Monday with ADAPT

I was really hoping that the rain would hold off until we returned to the hotel. No such luck! It always rains when we're in D.C. My mother says it's because God is weeping that we still have to come here. If that's the case, God should make it rain on the bureaucrats heads, not ours.

Our first stop was the Department of Justice (D.O.J.). For those of you who don't know, the DOJ is responsible for the enforcing the Olmstead decision which said that people with disabilities have the right to receive services in the most integrated setting that is safe. With all the state budget cuts, enforcing Olmstead is difficult because community-based settings are optional whereas anyone who wants to go into a nursing home has the right to do so as long as they meet the requirements. And there are no waiting lists. I have one question: Why would you make an entitlement no one wants instead of paying for the cheaper option that people want? Only in Washington and various state capitals. The D.O.J. big wigs agreed to meet with us here at the hotel on Wednesday at 4pm. Go us!

After the victory at the D.O.J., we stopped in a park to have our traditional McDonald's lunch. there were no fries this time and I'm kind of glad about that because i just learned that McDonald's fries don't mold after 12 weeks. Don't believe me watch the special features on the Supersize Me DVD. But I would have eaten them anyway, as I was so hungry.

Finding a place to pee when ADAPT is out on an action has always been difficult, especially when you're in a wheelchair. A lot of people wear Depends so they don't have to worry about this issue. I can't because I'm allergic to the plastic. When I get back, I'm going to have my friend Laura make me some cloth Depend-like garments that I can use for these events.

Then what happened to me today won't happen again. I was going to use a Port-A-John at the park we stopped at, but the wheelchair-accessible ones were padlocked. WTF? Finally, we just overtook the first-floor bathroom in the Air and Space museum which is very small by the way. I do not recommend it. I waited in line for about a 30-45min for the bathroom. When I came back, everyone had left. Luckily, my roommate Cheryl called my cell phone earlier in the week, so I had her number.

Shaniek and I made it to the National Governors' Association (NGA) after 25 minutes of walking, including misdirection by a gentleman whose heart was in the right place. I'm happy to say my chair held up over the grass. I've been to the NGA before, but I'd forgotten where it was.

The NGA is the organization to which every governor has membership. They have a lot of power, but you wouldn't know this because no one ever hears about them. ADAPT has been negotiating with the NGA for years. Today, they finally agreed to contact ADAPT leadership in ten days and discuss including community-based services as part of their best practices model which many states follow.

As happy as I was at this second victory, the score by my count is ADAPT:2 institutional bias:0. It was hard for me to be at the NGA because I kept thinking of people I love who aren't here anymore. I especially missed Buddy who was an ancient man from Philly with a horn he blew with his foot. I've never been to an action without him and up until I learned of his death abotu 3 weeks ago, I must confess i thought he was immortal. He lived a good life, mostly free of institutions even in the end. But it doesn't make it any easier. I still miss him. I really feel that the only time it's safe for me to miss people is when I'm here. Everyone else understands. These people were their second family too. But then I remember there are battles to be won and my friends wouldn't expect me to stop fighting to mourn them, so I do what every good soldier does and soldier on.

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