It'd be great to get Hanni to weigh in on the subject.
The most interesting question asked at one of our school presentations came from a fifth-grader on Long Island. “If you could see for just one day, and you knew that at the end of the day you wouldn’t be able to see anymore, what would you do that day?”
”I try not to think about how life would be if I could see,” I said, explaining that one coping skill that has helped me since losing my sight is to focus on the things I can do. “Thinking too much about the things I can’t do anymore would make me feel sad all the time.”
I tell kids I’ll answer anything they ask, though, so I gave them the first three things that sprang into my head. I’d Look at photos, try to memorize what everyone looks like. I’d go to our local coffee shop, sneak looks at the other people there and make up stories about them in-between reading the newspaper and sipping on an espresso. I’d drive over to Flo’s, take her out for lunch, maybe pick up some groceries on the way home.
An article about Braille in last week’s New York Times quoted a woman named Laura Sloate, who lost her sight when she was six. Sloate never learned Braille in school, and she uses a talking computer and other audio devices to manage a Wall Street investment firm.
“When Braille was invented, in the 19th century, we had nothing else. We didn’t even have radio. At that time, blindness was a disability. Now it’s just a minor, minor impairment.”
Just a minor impairment? Really?
Technology has made it easier for those of us who are blind to read without using Braille, but technology can’t make up for other things we miss out on. My answer to that fifth-grader was not only a quick study of the things I miss most about not being able to see, but a quick study in things technology cannot yet do for those of us who are blind.
Blindness is one of the most feared and misunderstood disabilities, so I can understand why the woman quoted in that New York Times felt compelled to downplay it, tell the reporter that her blindness is just a minor impairment. We blind people are always walking a fine line. We don’t want others to make assumptions about what we can and cannot do. And it can feel like we always have to prove ourselves.
But I, for one, would never characterize blindness a minor impairment.
The first time I heard my friend, Dawn, who happens to be blind, refer to her condition as an “inconvenience,” I could not believe it. But likewise, when Dawn read that blindness was a more feared condition (by the general public) than paralysis or life in a wheelchair, she was shocked! Who would want to make these comparisons, for heavens’ sake? To have two friends like you, Beth, and Dawn and a father who gets injections in his eye every 7 weeks in order to maintain his vision at age 96, is to know courage up close and personal. To dwell on the possible rather than what can no longer be possible is a lesson in humanity that I learn over and over by knowing the three of you.
Dawn is my hero. Your comment is so touching, Benita, that it leaves me ferklempt. THANK YOU For responding to this post, this was a difficult subject for me to sort through and write about, and your thoughtful response assures me it was worth the trouble.
Another thought-provoking blog. Surprising you didn’t answer the kids by saying you’d want to see artwork, or go somewhere to take in nature or look at beautiful scenery…
Remember, my answer to the kids was the first things that came to mind — of course a million ideas came to me later. I *did* tell the kids I might be tempted to go see Italy, but then said I sure wouldn’t waste 9 hours of that precious day sitting on a plane!
I loved your instant and honest reply to the kids. It resonated of the Stage Manager’s advice to Emily Webb Gibbs (in Thornton Wilder’s majestic play, “Our Town). Emily, if you recall, has died in childbirth and has been told that she can “go back” and revisit any day in her life. She wants to choose the day she first realized that she loved George or the day her older child was born. The Stage Manager, as well as the long-time dead, caution her to choose a very ordinary day, because “that will be special enough.” She chooses her 12th birthday and not only relives it, but watches her 12-year-old self living it. Of course, the ordinariness of that day is elevated to extraordinary.
Your answer, for me, has elevated reading the newspaper and sipping an espresso to a new height. I thank you for that.
Thought this quote was fitting – “We all have ability. The difference is how we use it.” — Stevie Wonder
First- What a thought provoking question from the 5th grader. And somewhat surprising that you haven’t had this question before. Interesting that your first thoughts were about the people around you and the newspaper. Every Sunday when I sit down at the breakfast table with Rick to read the paper, I think about you and how that was a favorite time for you and Mike, doing the crosswords. I agree on your thought to NOT spend the day traveling to Italy! I’m sure it is overrated!
I was struck by that comment in the NYT’s article too, and wondered what you thought, Beth. Thanks for the insights.
Your comments make me realize just how important newspapers – the real kind, not the online version – were to me. There’s something — dare I say, romantic? — about spreading the paper out, scanning the headlines, feeling the newsprint in your hands. I can’t see to read them anymore, but still it makes me sad to think newsprint may someday be a thing of the past. That said, I am also thankful for online versions, they allow me to keep up with the news using my talking computer. LOTS of friends emailed me the online version of that NY Times story about Braille, it made me feel smart to think I have so many friends who read the New York Times! PLUS it motivated me to write this blog post –thanks, you guys!
Oh, and about crosswords – Mike took a hiatus from them after I lost my sight, that ritual where he’d work on it a bit, set it down on the kitchen table, I’d work on it, then he would and so on, well that was a pretty strong ritual in our early lives together. I think that right after I lost my sight Mike was afraid it would make me too sad (or jealous!) to know he was working on the crossword by himself. Or maybe it would make *him* sad to work on it by himself? Time has passed, though, and now Mike is back crosswording with a vengeance. A friend who gets the Sunday Times cuts out the puzzle and collects them to give to Mike, and I got him one of those “NY Times Sunday Crossword” book collections for Xmas. He’s a crossword fiend. He often completes those very tough Sunday NY Times puzzles all by himself, and when he gets stuck he asks me for help. And so, it’s different than it used to be, but we’re still collaborating!
What a great question! And no, I’m not smarter than a 5 th grader! Loved your response and I love the parallel made to Emily Webb Gibbs. Makes us think about what’s important to us. Very well written Beth. I’m sure it wasn’t an easy exercise.
It’s true, this wasn’t the easiest thing to write. By chance the folks at Chicago Public Radio read that NY Times piece, too, and contacted me to see if I wanted to write an essay about it. I used a lot of what I’d written in this blog for my radio essay. When I was at the studio recording it today I went off on tangents, got kind of choked up and felt like I was using the poor sound producer as my counselor!
It’ll be interesting to hear how he puts all of what I said into a coherent radio piece. Stay tuned!.
As impairments go, blindness is certainly not a minor deal. It is a very major impairment for those who don’t share it. I believe that though technology has opened up a lot of things for us who are blind, the nonchanging attitudes and fears of those who can see makes this minor detail much more difficult all around. Unless there is more understanding to provide access for and a determined willingness to include persons who are blind in activities of daily life rather than treating us as special guests, the only minor thing about blindness is being treated as an afterthought.
What an interesting, and frank, comment. Wondering what you mean by being treated as a “special guests”? I’m guessing you mean that others think we’ll just be around in public now and then, but we are not a permanent part of society.
I feel I am treated as a “special guest” sometimes, but in a different way. I think in some circumstances people are very happy to have me there in a public spot, it makes them feel “cool” that there’s a person with a disability around, they welcome me to the event and love the way my presence makes them feel open-minded.
But then when something comes up that I can’t participate in — they pass out printed handouts for everyone to follow or some such, well, I get a strong feeling that they wish I hadn’t come. All of a sudden my presence makes them feel awkward.
As for special guest, what I mean is that even if you as a blind person are included, you will often feel that you have been included as a favour or have access because of something exceptional like having had some kind of accommodation. I believe that accommodation, though it gets you in the game, having to do it elevates the perceived differences in a person who is blind in the eyes of the counterparts. I’ve often said and I know that we’ve had this come up in our personal conversations, it’s the “what are we going to do with dad” syndrome.
Oh, yeah, I get what you mean. Like when you walk into a place with your Seeing Eye dog and everyone moves chairs and tables to get you the perfect seat, when all you want to do is quietly sit down, have your well-trained dog quickly find a spot under your chair and get started with the event. . Or at a conference where they apologize in front of everyone for not printing the powerpoint presentation in Braille. They forget that they’re reading everything from the powerpoint presentation out loud, they don’t *need* to print it out in Braille. Yes, you’re right — those sorts of accomodations do accentuate our blindness, and they probably add to the fear outsiders have of our “minor impairment.” Oftentimes I try to get to events early and have Hanni situated under a table before others get there. Better to have other participants unaware of my blindness, they treat me like normal, the discussion can be about the event, or what we’re about to hear or learn, rather than them feeling awkward about me being there. . If, later on, they discover the dog under the table, they are pleasantly surprised. You know, they’ve already spoken to me, we’ve had a conversation, they know I’m okay and they don’t have to be weirded out that there is a blind person in the room.
[…] second one was about that fifth grader I wrote about here, and the producer liked that one better. So did I. I recorded it last week, and it aired yesterday. […]
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