My WebMD: Learning to Live With Blindness
Diagnosed as a teen and nearly blind by 49, Erik Weinstock is developing more self-esteem and autonomy, not less.
I've been going blind my whole life. I was born with choroideremia, a rare, inherited disorder that causes gradual vision loss. My doctors diagnosed it when I was 14, after my pediatrician saw small spots in my eyes. I had known I was having trouble seeing, especially at night, but at that age I didn't care. But then the doctors said, “You'll have a hard time in your 20s, a very hard time in your 30s, and you'll be blind by 60."
They were right. I am 49 now and almost completely blind, except for a sliver of vision in my left eye. I can see some light and some movement. But I don't know what my 9-year-old son looks like. I can't walk down a sidewalk without a cane.
Living With Blindness
I accept this now, but I was in denial for 30 years. The vision loss was so gradual it was hard to monitor. But I was trained as a mechanical engineer and working full time, and I didn't want to accept the fact that I was going blind. I didn't want to ask for help. In fact, I did not use a cane until 2004.
It was a wonderful optometrist at LensCrafters who told me that year to stop driving. She also said I could get disability payments and training about how to live with blindness. At the 10-month training program at the Center for the Visually Impaired in Atlanta, I learned how to use public transportation, how to talk to people, and how to use adaptive aids in my own home -- like bumps on my appliance dials and software that “reads” the text on my computer screen out loud. My phone also talks to me, as does the thermometer I use for taking my son's temperature.
Dialog in the Dark
I'm more independent now, and my self-esteem is higher. I've started volunteering with the Choroideremia Research Foundation, which is working to find gene replacement therapy for the disease. In 2008, my vocational rehab counselor told me about Dialog in the Dark, an exhibit that has been presented in more than 20 countries and is currently in Atlanta, where it made its United States debut. (An exhibit is set to open in New York City this summer.) I'm one of the visually impaired guides who leads visitors through several darkened galleries -- replicating settings such as a food market and a park -- so they can sense what daily life is like for someone who is blind. It's a rare chance for blind people to lead, not to be led.
The goal isn't to make people feel sorry for blind people. It's to help them discover how very capable blind people are -- how they use their other senses to navigate their world. It's about helping people change their perceptions of otherness and difference. The experience is so exciting -- peoples' perceptions really do change.
I like to tell people, “I don't want your sympathy. I want your empathy, tolerance, and understanding.” And if you want to help a blind person, don't grab their arm and push them. Simply say, “Can I offer you some assistance?”