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.