reflections related to disability advocacy, family and (needed) cultural change
Saturday, December 27, 2008
Geraldo Rivera and Community Living Options for People with Disabilities
Not very long after my daughter with Down syndrome was born I went to a conference about some sort of disability issue. I don’t actually remember the topic of the training, what I remember, that cut me to my soul, was the conversation at my lunch table between a young woman with Down syndrome and her mom.
The woman was about 20 I thought and she was complaining hard to her mother about how much she hated her job… her mom put her off and told her that she couldn’t change her job because her home situation was attached to her job. The young woman was quiet for about a minute then she said that was fine because she hated her house too. She went on to say she hated her roommate, hated that she couldn’t paint her room the color she wanted. Her final sentence was that she shouldn’t be in prison because she hadn’t done anything wrong.
I drove home thinking about that gal with tears streaming down my face. I knew that a lot of what she was doing was ‘putting on a drama for her mama’ (as we call that at our house.) I also knew she wasn’t wrong—she lived a system-based life and she did NOT have a lot of choices. I was pretty choked up when I was telling my husband about it and we determined that afternoon that we wanted Jennifer to have what we call “a life anyone would want.” Nothing else could be acceptable.
This article appeared in my local newspaper yesterday. It tells the story of a local girl with a spinal cord injury who is successfully hosted Christmas in her own home after moving out of a nursing home this year. They say the road has been rocky at times (which it is for anyone who lives on their own—if we have one more plumbing problem this month I am moving!!!) And she feels like it has been worth it.
Tonight ‘Geraldo At Large’ also highlighted the importance of community living options for people with disabilities tonight. (The preview I have is all that is available so far, but I will post or link to the rest if it becomes available. It was really good food for thought.)
The points in tonight’s show were clear: • Community based living options are cheaper for taxpayers than institution-based care. • Any kind of care that can be provided in a large institution can be provided in a smaller setting in a community. • A conservative estimate of the waiting list for services for adults with disabilities is >700,000 people. • People with disabilities deserve and need to be part of their communities—for education, for employment, and for choices for living. With these opportunities they can contribute to their communities. • As Geraldo Rivera said in the program, “In these economic times the fear is that the people who will lose the most are those who are the quietest—the elderly, the ill and those with disabilities.” (This is a paraphrase—I only heard it once, but I will link when it becomes available and you will be able to hear it for yourself.)
Let your voice be heard to end the waiting lists, to fund Medicaid waivers and for cost-effective community living options for people with disabilities. Vote on Change.org (Just click on the widget up above), write to your representatives, write letters to your editors. Get this issue on the country's radar screen now--waiting will lead to deeper crises of neglect in health, housing and opportunity for people with disabilities
Other articles about lives anyone would want here and here and lots more here.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.