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Tags archives: usher-syndrome

An Open Letter to Deafblind People Out There

  Life is created by you only. People, objects, events, and education come into your life and they leave with some kind of mark, but only you as a human being remain. So it’s important to live your life the way you want to. If you find purpose in your life, then you have found peace. I’m writing this letter that I hope hundreds, maybe thousands of people will read, [...]

The End of Deaf-Blindness

Last Friday, my sister Liz and I went to the Day of Science conference by the Foundation Fighting Blindness (FFB) in San Diego. We were in town anyway for our father’s birthday the day before, so this event was a welcome opportunity to find out the latest research in retinal degenerative diseases. We both have Usher syndrome, a genetic condition that marries deafness to retinitis pigmentosa. The Foundation Fighting Blindness [...]

Deaf Identity, Interrupted

One gem emerged from the deaf blogosphere blitz which arose during the May 2006 protests at Gallaudet University. It is Genie Gertz’s video succinctly explaining the complex concept of Deafhood in just a few minutes. When I saw it for the first time, it totally clicked for me. I memorized it and repeated the video to all my friends for weeks thereafter, copying her sign for sign. Of course, in [...]

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