What a group! In Madison, Wisconsin, I was working with a group of about 50 people with disabilities about the subject of their rights. These were people with disabilities who were very familiar with self advocacy and by and large had all found their voice. Keeping control without being controlling was extremely difficult - fun, but difficult. We laughed a lot. At the front sat two people with multiple disabilities. He, slumped over in front of a communication machine, she with her hand resting slightly on his arm. They looked like they were enjoying being out, being with each other but, to be honest, I wasn't sure how much they were 'with' me.
As we talked as a group about what made each of them happy, he indicated that she was his girlfriend and that she made him happy. She beamed and said that being with him made her happy. What a lovely couple. Then it was time to get on with the work and discus rights. Issues were raised at lightening speed and I had to keep slowing the group down so that Joe could get everything written on the flip chart. These folks had a list of rights they wanted from their care providers and were very willing to put it all on paper.
Suddenly.
It's always suddenly ...
A mechanical voice spoke ... "We want the right to live independently in the community." My eyes flew to the little man slumped in front of the voice box. "Was that you?" I asked stupidly. His eyes twinkled and he nodded. We then joyously celebrated him breaking into our chatter with his thoughts ... he had made his presence - no - his MIND known to us. He let us know that community living was in his heart. His girlfriend looked at him with such pride.
I asked him what his name was and his support staff told me that his name was "Darwin". I kid you not, I just met Darwin.
When we presented the Bill of Rights to all at the Madison conference (staff had been elsewhere doing other things while we worked on the bill of rights) I asked various of the self advocates to come up and read each of the rights to the audience, but I asked Darwin specifically to come up and present his right. He agreed. I then asked Darwin if I could write about him and what he said on my blog,and he nodded that it was ok.
Here's how I introduced Darwin to the audience - and here's how I introduce him to you ...
Meet Darwin a guy who is truly and completely, evolved.
Dear Dave- Cool. Finally, an idea from Darwin that I can 100% agree with. Frances
ReplyDeleteDave,
ReplyDeletethanks for sharing - yet again!
and thanks to you Darwin!
Lina
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ReplyDeleteI love the phrase "evolved parent" that you used in Vancouver - it has become a goal, and a fabulous conversation starter ...... but who knew that our "kids" with disabilities would evolve faster than we can keep up? One of the many things I wish I had known, so I would not have wasted so many tears when we got that big scary label along with the cute little baby.
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