I can't believe it's been almost three months since I wrote that diary about reduced attendant hours. In some ways, it has just flown by, but in other ways, part of my brain has been in that first stunned moment since I found out, almost the whole time. And people think living on government benefits is an easy life...one thing you can't know until you've done it yourself, is how much time people on benefits spend being afraid to get cut off. It is almost like a job in itself. Want to know things I found out? Follow me below the fold.
KosAbility is a community diary series posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Thanks to the support of my local independent-living center, specifically my friend and advocate, David Carey, I learned how to start what I hope will be a successful appeal. Still, it makes me uncomfortable to think of how much sensitive information I had to part with about myself and my health and they don't have to tell me anything about the new figures they used to come up with the smaller amount.It's all part of the narrative that says poor people with disabilities lie all the time.Which sucks, but at least my new doctor did not give me a hard time about signing off on it. During this whole time, despite not writing about it much here, it has been hard to fully engage about anything else, like a hoarder with a lawsuit against some waterpark(as a side note, that happens so much, I wonder if it is what jumpstarts these people's urges to keep multiple copies of everything...discuss among yourselves.)
I have ultimately had to bring my disability life and my political life together to make this appeal happen, as I have included statements from fellow activists about my community activites and the assistance my mother provides as my attendant. I was uncomfortable about doing this, even though they have not made a big deal about it and could probably guess at some of my difficulties. However, the lifelong pressure to keep what I thought of as "my CP life" and whatever I considered my "real life" is not so easily overcome. It can be hard to let people in that much, considering how much I already owe others. But the response has been so positive I'm more confident of facing a more integrated future.
Sat Dec 15, 2012 at 12:55 PM PT: 12-15... Just a brief note to let people following this story know--I got the letter today and WE WON!!
I couldn't have dealt with it all without Daily Kos to tell my problems to.
On to the next fight!!