Blindness Has Its Benefits: Recognizing a Proud Moment
by Beth
When I was 25 years old, I was diagnosed with an eye disease called retinopathy. That diagnosis led to a long series of doctor visits, laser surgeries, hospitalizations, and last-ditch efforts to save my sight. In the end, nothing worked. A year later, I was totally blind.
July is Disability Pride month. I am not ashamed of being blind, and I can’t think of a single circumstance when I had any trouble just coming out and telling someone, “I am blind.” Blindness has its benefits, actually. You get to walk arm in arm with people a lot, you can go anywhere with your service dog once they’re trained, and rather than judging people by what they look like, you have to judge them by what they say and what they do.
Beth and her service dog.
But none of that makes me feel particularly proud to be blind. I didn’t work hard to become blind, and I don’t expect to get any awards for not being able to see.
So ever since Easterseals asked me if I wanted to write about Disability Pride, I’ve been trying to figure out what disability pride actually means. I looked for some books that might explain it all and found I could especially relate to this paragraph of the Disability Pride book that is part of the Understanding Disability series:
Some people view disability as something wrong or bad, which can make people who have disabilities feel bad about themselves. This negativity can also impact the rights of disabled people, like getting access to school or access to voting. It can make nondisabled people treat disabled people unfairly.
Is there any event in my life that left me feeling proud to have a disability? Proud to be blind? I thought and thought about this, and finally something came to me: I could write about the time when a live theater in Chicago asked me to be a tech consultant for a play there.
Here’s what happened: Early on in my blindness, I got word that the University of Chicago was staging Wait Until Dark at their renowned Court Theater and looking for a tech consultant. The play is about Susy, a woman who is newly blind and married to a man who can see. The cast wanted to learn more about what life for a couple like that is like, and guess what? I am married to a man who can see, and I was newly blind when they were staging this show. I used my talking computer to email the stage manager and let him know I was interested. His response came immediately, asking if I’d be willing to come by at rehearsal show them the ropes. I answered right back with an enthusiastic, “yes!”
I didn’t lose my sight until I was 26 years old, so I’d seen Audrey Hepburn in the film version of Wait Until Dark on TV when I was a kid, and I had found the film absolutely terrifying: it centers on a “cool-as-ice criminal who smooth talks his way into the home of Susy, an unsuspecting blind woman who has no idea she has valuables hidden in her apartment.”
During the first rehearsal, the actors and I just sat in a circle and talked. One actor — he might have been the guy playing the criminal — asked, “If someone was standing in your apartment, not moving and not saying a word, is there some way you would just sense they were there?” Nope.
Another cast member asked, “If a person you’d met before came your way again, but this time disguised his voice, would you know it was him?” Absolutely not, I told them.
Truth is, I’m horrible with voices. Example: passers-by in my neighborhood often call out a friendly ‘Hello, Beth!’ but unless they tell me who they are, I really have no idea who is greeting me. If they disguised their voices, I’d be totally clueless.
“But that’s just me,” I reminded the actors. “I don’t speak for all blind people.” I tried to explain that we all have different skills we use to make our way, and the cast seemed to understand exactly what I meant.
“How do you think the friends you’ve made since you were blind are different than the friends you made when you could see?” This question came from Emjoy Gavino, the actress who’d be playing the lead. After thinking it over a bit, I said, “I think the friends I’ve met since I lost my sight are surprised to find out they actually like me.” The minute that came out of my mouth I worried it probably didn’t make sense. I tried to explain. “People want to meet me so they can think they’re cool, they’re open-minded, you know, they can tell other people that they have a friend who has a disability. And then, if they take the time to get to know me, they’re surprised to find out they like me.” Another cast member phrased it better. “They’re surprised to find out there’s more to you than being blind.” I nodded.
We sat in that circle for almost two hours – they’d ask questions, I’d answer. We’d get off subject, then back on track again. “This is probably a ridiculous question…” they’d start off, then ask some of the most interesting questions I’d been asked since losing my sight.
Then, time was up. They had to get back to work and rehearse.
And that day, dear Easterseals blog readers, marks the first time I came to understand what the words “disability pride” might mean. I felt proud to serve as a tech consultant at a well-regarded Chicago theater, proud to work with so many talented and creative theater-types, proud to be asked so many intelligent and important questions, and proud to be listened to when I answered them.
And I felt especially proud to be included in — and welcomed to — a group of talented people who now knew what it feels like to have others judge you by the way you look without bothering to find out there’s more to you than your disability.
My sighted husband Mike and I were awarded free tickets for Wait Until Dark’s opening night, and lead actress Emjoy Gavino was surrounded by well-wishers at the toast in the lobby after her performance. Somehow she manage to make her way towards Mike and me before we left.
After uncoiling from our congratulatory hugs, Emjoy said she had a present for me. “I thought of writing you a thank-you note, but I knew you wouldn’t be able to read it by yourself,” she said, pressing a CD into my hand. “Its music Susy would have listened to.”
Recognizing the quizzical look on my face, Emjoy explained. “When I’m playing a role, I like to put songs on my iPod that the character would listen to. It helps me get into the part.” She reasoned Susy would be a jazz fan. You know, Greenwich Village in the 60s. “There’s some Miles Davis, other jazz. Oh, and Joan Baez. Some Bob Dylan tunes, too,” she said. “I copied them from my iPod onto this CD for you.”
Such a beautiful, thoughtful gift. A perfect souvenir. The opportunity I was given to be a part of a live theatre production was that as well: a beautiful, thoughtful gift. And I was proud to receive it!