Monday, January 24, 2011

Brainstorm in Providence with a side of Serendipity

I occasionally get invited to small group brainstorms of key leaders in fields where we’re active (and we’re active in a lot of fields!). I’m on the plane home from one such weekend in Providence, Rhode Island, held at Brown University. The Think Different Summit was 15-20 smart people, led by an experienced facilitator, trying to imagine the future of the learning disability rights movement.

The outcomes of the brainstorm aren’t for me to share, although I look forward to tweeting/blogging as some of these results hit the web. But, I can share the excitement of being part of this process and some of the things I learned.

For one thing, it was the first meeting with a major presence of adults with avowed learning disabilities. Of course, with the prevalence of people with learning disabilities in the population being one in four or five, they’ve been part of probably every meeting I’ve ever been to! But, these leaders were “out” about their disability.

And so, the first insight for me was the role of adults with learning disabilities in their own rights struggle. I would not expect the parents of blind children to drive the rights struggle for blind people, but I had taken the role of parents as the prime movers in the LD movement for given. Part of this is that LD was much less diagnosed in my generation, but now we have quite a number of people in their 20s and 30s who have known that they are people with learning disabilities from a young age. I’m sure part of the issue is that society strongly encourages people with LD to stay in the closet about their disability. But, the increased leadership of people with LD in their own movement seems a given. Of course, it’s pretty clear given heredity that many parent leaders in this effort have LD too!!

Over the weekend, I received email from a parent who is will be in court next month, fighting an attempt by her son’s school district to remove his access to textbooks through Bookshare (he won’t lose access to Bookshare itself, just the couple of thousand K-12 textbooks that we have where the school is the gatekeeper). I was able to share her predicament with the people there, and the chair of one of the organizations present jumped to offer his assistance to this parent, since he had worked on LD advocacy in her very state.

The need to requalify for dyslexia services over and over again at great expense (thousands of dollars each time) to get accommodations in school and for testing came across as a huge problem. At Bookshare, we don’t think that people with LD get “cured,” because that's not our understanding of the science. We don’t require people to qualify again once we’ve received the initial certification of a qualifying disability. We’re dealing with people with severe disabilities that stop them from reading a print book effectively. This won’t go away. But, the great expense involved in qualifying puts advanced educational opportunity beyond the means of most families with a child with learning disabilities. This seems to be an even bigger problem than I recognized.

Another welcome opportunity was the chance to talk informally with some of the top leaders in our field, including Jim Wendorf of NCLD and Andrew Friedman of RFB&D, who are both on the federal commission on accessible materials for post-secondary students.

Although the topic was on learning disabilities, one of the funders present had a strong interest in environmental ideas. Right now I’m spending more time on a new project concept at Benetech around helping local government address practical issues around climate change. I received a handful of people we should be talking to, and strong feedback on different aspect of our ideas.

We are strong believers in the power of serendipity: the idea that great things happen when you get together with interesting people that were in no way anticipated! This weekend just reconfirms that for me: most of these exciting outcomes weren’t anticipated by me: and I’m not even discussing the central topics of the event!!

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