Rebecca Alexander is the author of the book Not Fade Away: A Memoir of Senses Lost and Found. From her Q & A with Deborah Kalb:
Q: What do you hope readers take away from your book?--Marshal Zeringue
A: I think the most important thing—I was pretty disappointed [to] find the book in the disability section. It was such a bummer. We still live in a world that’s closed-minded. We’re still very much not a totally inclusive society.
Having a disability doesn’t mean that’s who you are. We’re all dealing with something. People who identify with my book are not necessarily people with disabilities. My process is similar to other people’s—a journey toward self-acceptance. I found the book on the disability shelf, and thought, We have a lot of work to do.
Having Usher Syndrome—on the one hand, people could say, That’s the worst thing. There’s no question on some days I feel terribly sad. [But] if it weren’t for Usher Syndrome, I never would have learned sign language and tactile sign language, or recognized how fragile life can be…
I don’t think people look at me and say, She’s going deaf and blind. You don’t know what people are going around with.
Q: What advances have been made regarding Usher Syndrome Type III in recent years?
A: Stem cell research is really important, and there was a big step back when stem cell research was put on hold. All different...[read on]