Note to Reader: This blog post is about dyslexia so I have
made the choice not to spell check my natural spelling
I had the opertunity this week to meet Andy Imparato and
Senator Harkin for the first time in person. When I brought up the subject of dyslexia,
Andy asked me if I would organize the demographic. “We have some parent
groups,” he said, “but I want you to organize adult dyslexics.” When I
hesitated mementarly Andy said, “just say yes.” And so I did.
I had never really thought of dyslexia as a parent-dominated
disability or likened it to the issues suranding autism and self advocacy. But
Andy’s order made me consider it differently. I had been aware for some time
that none of the top dyslexia researchers and authorities were dyslexic
themselves—mostly parents, at best with a once removed relationship to dyslexia—but
had never given it much thought. But when I got home from the event where I had
met Imparato and Harkin, I traveled to the International Dyslexia Assocation’s
website and viewed their boad of directors. Only two out of twenty-one board
members were dyslexic themselves. At once I proceaved the problem Andy had
aluded to.
How strange it is that such a glaring issue in the dyslexic
community had aluded me for so long. Of course self-reperesnenion and advoacacy
are important in both research and public policy. What could be done? Ari
Ne’eman’s Autisic Self Advocacy Network provides a great model for a disalbity
rights organization run for and by people with autisom. Dyslexic Self Advocacy
Network? Sounds good to me. Let me know if you want to help.
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