News from the Sitting Position

Sunday, August 17, 2008

Murder of Disabled Girl

Just when I thought life was going pretty well, I had surgery but nothing horrible was happening except I can't go to the bathroom, no one in my life has died in a month, which I think for me is some sort of record but today I learned from a fellow Disaboom blogger about the case of 14-year-old Danieal Kelly who was apparently abused, neglected, and starved to death because she was disabled. She had the same disability I do, but apparently in her case there was some cognitive involvement, which... Sign in to see full entry.

Saturday, July 26, 2008

Happy Anniversary ADA

Today was the 18th anniversary of the ADA or Americans with Disabilities Act. Its hard to believe that when it passed I was a 13 year old girl enjoying two weeks of independence and freedom at a disability summer camp. It seems fitting that the law passed then. We had a dance to celebrate. Today, as I do every ADA day, I made it a point to go outside and do things, even if it was just normal things, like visiting the grocery store or going to the library. I feel that especially on this day it is... Sign in to see full entry.

Sunday, June 29, 2008

Thoughts on my new PCA approval.

I got my new PCA approval today. It must have come yesterday, but I didn't check the mail then. I'm happy to report that my hours are staying the same. Of course, I would really like to get 14 more hours per week, so I could start paying my night staff from 6 am, but you can't always get what you want. I still feel that night people get screwed a lot, and I will keep advocating to change that. I did some interesting figuring about the cost of my PCA program, versus the cost of me living in a... Sign in to see full entry.

Thursday, May 8, 2008

In Memorium: Eric Levine

Today I found out that my friend Eric died. Eric was many things: a musician, a choir director, a friend, a colleague, and an activist. I knew Eric had been in the hospital for about a week now. I found out from the Board we both sit on at People's Music Network. I never thought he'd die, at least not now. For the past several nights, when I sat at my computer doing latenight work, I thought, "Oh I should call Eric". You know how boring hospitals can be, but it was always late, and I never got... Sign in to see full entry.

Wednesday, April 9, 2008

Something I Wrote to Help Seek Justice...

Author's Note: I wrote this for my local community's annual May Day celebration. We create a play featuring the voices of workers in western Massachusetts and beyond. I wrote two monologues for this play. One is about a PCA, and the other is about a writer on the picket lines of the Hollywood Writers Strike. When I wrote the PCA one, I decided to base it on the story of one of my PCAs. Do you like it? Criticism is welcome. I got up too early this morning. My consumer is more of night owl than a... Sign in to see full entry.

Wednesday, March 19, 2008

Supporting Massachusetts Personal Care Assistants...

Today I got an e-mail from my friends and colleagues who are working to unionize PCA’s in Massachusetts. There is a big rally in Boston around April 1 st at the state house, and I’m going. Even if it wasn’t a tax write-off (which it is as long as I write about it) and even if it wasn’t the 1 st of the month when I have the most money for the month, I would find a way to cobble together the $66.00 that would get me to Boston and back along with my PCA. Fortunately, however, it is a tax write-off... Sign in to see full entry.

Monday, March 10, 2008

One Bad Thing and Two Good Things...

My friend, collegue Roland died. Two pairs of friends married- one in Maryland and one in Texas The Community Choice Act got some more sponsors! I guess it was a good and bad news day, but no news can counter the loss of Reverend Roland. The best thing I can do is try to live up to his example. I hope you enjoy Heaven, Roland, in about 7 decades- my goal is to live to be 100 and I'm 31 and a half now- (but not sooner, I hope) I'll be joining you and all the other warriors who've gone before... Sign in to see full entry.

Friday, September 21, 2007

More Ways you can support the Community Choice Act!

As many of you know, I've been busy supporting the Community Choice Act, a bill that would free disabled people from insitutions. I'm happy to be going to the Finance Comittee Hearings for the bill in DC on Tuesday! Below is my testimony, which I emailed them today. Dear Members of the Finance Committee, I am submitting written testimony on the hopes that you will decide to endorse the Community Choice Act, Senate Bill 799. I have spent over a third of my life advocating for this Bill in various... Sign in to see full entry.

Thursday, September 20, 2007

Call Today or Monday Please, in support of homecare

Dear All, You can support the rights of people with disabilities and older people to stay in their homes with supports and services. Call today or Monday, please. The hearing is Tuesday, Any testimony you want to send needs to be sent now! The hearing will be next Tuesday. Let the Senate Finance Committee know why you support the Community Choice Act (S. 799) Voice of the Retarded is sending lots of pro-institution letters and testimony and the Committe needs to hear from CCA Supporters too.... Sign in to see full entry.

Friday, September 14, 2007

Never thought I would get arrested at a labor union...

Dear Fellow Justice Workers, I've just gotten back from Chicago, thanks to a lot of help from a lot of you. I was arrested twice. The first arrest occured on Monday at the American Medical Association. My second arrest was far more surprising, as it occurded at the headquarters of AFSCME in Chicago. Never, in all my years of activism, did I think i would ever get arrested for blockading the lobby of a labor union. But when you hear why, I am sure you will find it justified. AFSCME, unlike the... Sign in to see full entry.

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