Today I was scheduled to get my first Spinraza treatment. I’ve been told that I am the first Medicare recipient to get treated. Because of a weird Medicare regulation, I couldn’t get treated in the new building at Stanford. Something about a requirement that wouldn’t allow me to be treated more than 200 or 300 […]
My First Shot (Almost) Read More »
For those who don’t know already, I’m disabled by a neuromuscular disease called Spinal Muscular Atrophy type 2. Because certain motor neurons near my spine don’t work properly my muscles can’t get stronger and slowly atrophy as I age. This happens at different rates. Some children who have a more serious form of my disability
The Center for Disability Rights – Free Our People
The Center for Disability Rights – Free Our People Read More »
That Crazy Crippled Chick: Dignity of Loss: Something that’s talked about a lot in disability circles and special education circles is something called dignity of risk. Basically,…
That Crazy Crippled Chick: Dignity of Loss Read More »
There be possible spoilers ahead! The most recent episode of Glee, the new Fox television show about a struggling Glee Club, has stirred up some controversy in the disability community. At least in my corner of the disability community. You see a continuing character on the show is a wheelchair user, at least the character
Glee and disability Read More »
I came back to California in 1980. The first thing I did was go to the Center for Independent Living. There, I found listings for accessible apartments, personal attendants and help getting my benefits straightened out. I also found a community. Folks who were maybe not exactly like me, but who knew the terrain. They
Tomorrow will be my 50th birthday. It’s kind of a startling statement to me. 50. I keep getting hit with the realization that I’ve been on this planet a pretty long time. Things that seem really recent like the 80s are a really long time ago for some folk. It is a really long time,
When I’m online I tend to hang out at Livejournal, a few polyamory and disability related list serves, or alt.polyamory. I started this blog as a place to to put my longer meanderings. I tend to start these projects with good intentions. In this case I intend to write something fairly regularly here. We will
My First Post Here Read More »