The slideshow is also available (at a far better rate of speed - sorry this is so fast!) here.
Last night, on the roof of the Accessibility Center, on Healthinfo Island, in Second Life, I was privileged to learn about the experiences of Namov Abramovic, a real life from-the-ground-up warrior for the rights of those with disabilities. I could tell you that his words are powerful (enough to fuel revolutions, enough to engender spirited discussion) but my words, describing his, cannot do nearly the job that his own words can do.
For that reason, we have captured his words so that others can read them, and comment. As soon as I figure out how to do it, I'll also post the slides.
Gentle Heron:
Hello everyone and welcome to the Accessibility Center on HealthInfo Island. Thank you all for coming. Tonight we are pleased to introduce Namav Abramovic, in real life Nick Dupree. In Second Life, Namav is a co-founder of the Open Gates Peer Support Network, which provides a 24/7 chat and private support channel to people with disabilities.
He is speaking tonight on "Possibilities in Grassroots Activism, a topic with which you will learn he is intimately involved.
Tonight Namav will talk about questions such as "how can you change Medicaid policy?" "what is grassroots activism?" and "what does it mean to include people with disabilities?" These topics of course are of interest to people with disabilities, which is why Namav's presentation is co-sponsored by Virtual Ability, Inc. But all of us have or will interact with the health care system at some time in our lives. So we all need to be aware of the pitfalls of the system, and of what we as individuals can do about them.
The transcript of Namav's presentation will be available as part of HealthInfo Island's blog at http://healthinfoisland.blogspot.com/ after today. You will be able to post your comments on the HII blog when it goes live. Therefore, we ask that you send your questions and comments this evening by IM to either Carolina Keats or Gentle Heron. We will send them to Namav to address at the end of his presentation. Again, if our latecomers would please type their names into the chat for the transcript. I think we will be ready to begin.
Namav Abramovic:
Welcome! Thank you so much for coming. I'm Nick Dupree, and tonight I'm discussing what is possible in grassroots activism. This presentation is essentially the same presentation I've given in person at disabilities conferences in Boston, Chicago, Minneapolis, DC, and Martin Luther King's church in Montgomery. I've always had muscular dystrophy, and had to be put on a respirator at age 13. I always have a photo of me when I do this presentation in real life. Why leave it in for SL? People need to know that ventilator-dependent people aren't that scary looking.
To keep me going, I need a lot of care. I received nursing care from Alabama Medicaid. But because there is no federal mandate to cover people once they turn 21, states are free to do whatever they want for adults' long-term care. And in the poorer, more conservative states, what they do is pay for as little as the letter of the law allows. So people turn 21, and fall off with nothing. I saw the writing on the wall, saw the suffering and death that results from this situation, and I had to fight so I (and my younger brother) could survive.
So I fought like hell. Fight or flight.
I started when I was 19 years old. How did I win?
I started off simply writing letters to public officials asking them to fix this. I got nowhere at first. I started a small web page to document the responses (and non-responses) of the people in government (while also juggling university classes).
The web page went from being only a few letters, to being a big campaign. I worked on it every day. I sent it all over the web. I raised enough noise in my city to attract the attention of the local media. In August 2001, the local NBC station cornered a local legislator and asked him on camera what he was going to do about it. He introduced legislation in the Alabama State Senate to extend the care past age 21. SB 113: the Nick Dupree Adult Care Act. I went to Montgomery to testify to the Alabama State Senate Health Committee (this made the front page of the Mobile Register, which is pictured here).
Alabama Medicaid testified against it. They said we can't afford it. I argued that human life is invaluable, and we can't afford not to. It passed that committee. And another. Then it was crushed on the Senate floor. Alabama Medicaid has a lobbyist working the halls in Montgomery. I don't.
This was a devastating loss. No other path seemed open to me. But I plugged on. What other choice did I have? The attention faded away awhile, but I kept relentlessly writing and emailing. I never let go. A local activist said "he is like a dog with a bone."
Between university and my campaign, I worked 20 hr days. I got hospitalized once because I got worn down and got pneumonia. But it's relentless tenacity that wins.
Eventually, I got enough media attention that our state Protection and Advocacy agency had to sue our behalf. In February 2003, we filed a lawsuit: Nicholas Dupree and Ruth Belasco (my mom) v. Mike Lewis, Medicaid Commissioner and Bob Riley, Governor.
It is all the pressure points at once that finally felled the beast. Alabama Medicaid caved (before the judge could rule against them) and allowed me and a few others ventilator-dependent people to continue home care after they turned 21.
I won, three days before I was slated to lose everything on my 21st birthday.
If you hammer that tree long enough, it will topple....no matter how deeply rooted the tree is, or how small your axe is (see Bob Marley's song "Small Axe.") This is true of any cause, whether it's peace, regulation, civil rights, anything.
This seminar is about giving you the tools we need to change the world.
"What is grassroots activism?" It is important to note what it IS and what it ISN'T.
It is about influencing public policy. I don't think that just sitting around exchanging ideas is activism---it is a precursor to activism. You have to go out and DO IT.
We also need to define what ARE disability issues. Certain people (like people with disabilities) get excluded offhand, because they are different, or it is hard to include them.
- segregation
- majority excluding the minority
Below are pics of US Supreme Court, and also me in Montgomery. This is a quote from the Brown v. Board ruling. This got a big *gasp* from the audience, always.
Contrast with OLMSTEAD - it shows the same root issue
SEGREGATION
Once we see disability issues as a root segregation issue, we can be much more effective advocates.
INCLUSION
We ALL want to be included. it is an inseparable part of our humanness. To deny inclusion is to deny humanity
What is inclusion---real inclusion? People need real connection
real relationships
not "potemkin village" inclusion---institutions set up to look like fake towns, etc
by saying "real life" I am trying to say that there is no substitute for real relationships and supports
Self-determination means, I CHOOSE.
The basic human right of freedom
A freaking committee doesn’t choose my life, I choose
We can heal the world
Hard advocacy makes it possible
Related Links
Nick Dupree's Wikipedia page
NPR story about Nick
Wikipedia entry on the Disability Rights movement
Aldon Huffhines' excellent reflection on a startling mesh - Finding Obama’s Reality Check at a gathering of disabled people in Second Life http://www.orient-lodge.com/node/2800
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