Have you ever heard of Usher’s Syndrome? Children are born deaf, or become deaf within the first year of life. Soon after, Retinitis Pigmentosa follows - a progressive blindness as the optic cells deteriorate and cataracts develop. But there is a team of doctors here in BC who insist that the day is fast approaching when blindness is thing of the past. We need simply the money and the will. The brains and technology are already here.
On the evening of Valentine’s day, my wife and I went to Dinner in the Dark, a fundraiser for vision research. Tickets are expensive; there was an auction of Canucks memorabilia, a Gordie Howe jersey, a beautiful kid’s bike that we bid for and failed to win, and finally, the gimmick: we had to eat with blindfolds on.
I had thought we were to eat in pitch-dark. But just how would our waiters pour our wine and serve us dinner? The blindfolds made sense.
A few things about Blindness charity dinners. They like details. All night they played Andrea Bocelli, and I was about to complain until I remembered he’s blind. The centrepiece was a glass vase of roses interwoven with leaves of kale. Why? Kale is full of eye-positive vitamins, although I don’t know why the centrepiece wasn’t also stuffed with carrots. Among the auction items were fancy bottles of French wine with braille labels.
But on to the sensory part of the evening. We put on our blindfolds early in the evening and did a wine-tasting (in stemless glasses to avoid a glass catastrophe). Servers were instructed to tap our right shoulders to get our attention. “We can fool around and no one will notice,” murmured my wife flirtatiously, until I pointed out that we wouldn’t know if anyone was noticing us.
Being blind for an enforced period is odd. You quickly begin to bellow, because you aren’t sure if anyone is listening. You’re used to seeing someone’s face, someone’s eyes, looking at you, and you begin to fear that you’re being ignored. At first, when I put on the blindfold, I was heartened by the thin band of light that shone up along the bridge of my nose. At least I’ll be able to see my food, I thought. But that was wrong: my eyes got tired of looking down, and soon all the light gave me was a bright wash at the bottom of my perception, which is how many blind people ‘see.’
Another thing: many of us assume that we could survive being blind, thanks to our Daredevil-like spatial abilities and acute hearing. We think we’ll be fighting crime and playing piano concertos in our spare time. But I lost count of the times I stabbed my plate and brought an empty fork into my mouth; I struggled with dense, three-dimensional waves of junk sound in order to hear people who may or may not have been speaking to me. All I could hear was rhubarb-rhubarb and the clatter of forks. I had no idea how much I interpreted speech through faces, hand movements, context, body language, and eye direction. Hearing is something we romanticize - in reality it’s one of our least important senses. Hearing is supported so much by vision and touch.
There were a number of parents of Usher’s Syndrome children at the event. You knew them because they still wore the blindfolds when we adjourned to the auction room before the main course. The rest of us chickened out and took off our blindfolds when we went to the auction; they kept them on. They wanted to know what it was like to be blind, to stumble around in the dark, to constantly be at ease in a world that can run you over, bang your shins, cop a feel, or just simply ignore you in your world of clattering sound. They wanted to know blindness long term, because their kids would know nothing but.
The keynote speaker was a blind journalist and writer. He told us, flat out, that he wanted us to donate to the cause, but not for him. He wanted to stay blind, because he had a gimmick: he wrote about being a blind father, and he travelled the world and wrote about being a pathetically blind traveller. He had a unique niche in the writing biz. He even went to Egypt during the uprising, and the hotel staff took care of him with an earnestness that suggested they thought God had given them an onerous task. At the end, after we had nearly soiled ourselves laughing at his jokes, he thanked his wife. “She lets me fail,” he explained. It was a privilege to hear him speak.
We went home, paid the babysitter, and looked at our own kids. At the same time, many other parents were coming home and looking at their kids, and wondering if they were to be the blind people on the bus, desperately trying to prevent other passengers from stepping on their dogs tails. They probably thought of trust funds, surgical procedures that might one day work. I like to think they felt supported, that they had hope.
So if you get a chance, donate to your local blindness-fighting charity. If the doctor who spoke that night is right, we’re around the corner. We just might beat blindness.