A few weeks ago, a colleague forwarded an email to me with the heading “Maybe you’re interested in this?” Then I noticed that the subject line in the original read: “Blind Day.”
I thought that perhaps it was a joke. It wasn’t. This Tuesday, June 6, is Blindness and Visual Impairment Awareness Day, internationally. That is what the email said in Hebrew. But in this country, the English is simply “Blind Day.”
I love it. There is no thought given to political correctness or hyper-sensitivity. This country just calls it as it sees (or doesn’t see) it, and that suits me fine.
I am legally blind. I have a disease called retinitis pigmentosa, or, more precisely, Usher’s III. I was diagnosed at 18, after a fender-bender sent me to have my prescription checked, which led to an appointment with a specialist. Since RP is a family of diseases with varying timetables of deterioration, the first prognosis was grim: I was told that I could be blind in five years. By June 1983, one of the top specialists in the world gave me until my mid-40s, by which time I would be completely blind.
RP first affects the rods, the cells in the retina at the edges, destroying peripheral vision. Put your hands in a circle around your eyes and you will experience the world with tunnel vision. It eventually affects the cones, the cells in the center of the retina that enable us to distinguish color. Try telling the difference between black, navy, dark brown, and purple at nighttime, and you’ll get the idea.
My retinas are super-sensitive; I wear sunglasses in the winter, and when I get tired, my vision gets fer-fuzzed, and I feel like I am looking at the world through a screen door. Usher’s III also affects my hearing, and there are times when I cannot hear someone who is inches away from me. Unlike the vision problems, which are constant, the hearing issues are an unpredictable on-off switch. Glasses and hearing aids do not help either the vision or hearing loss of Usher’s III.
By the way, I am 58. I am significantly impaired, not totally blind. I no longer drive, but I am independently mobile; I do, however, walk with a white cane. The cane has two main functions: it helps me navigate and it alerts people to my impairment (I can also use it to do a soft-shoe tap imitation!).
It baffles me that some people still don’t seem to know what a white cane means, and I have been given very dirty looks (which I see) when a pedestrian who is deep into texting, or a group of people (not only teenagers), trips over the cane. Once a woman who tripped actually turned around and started to yell at me; the friend I was with yelled back at her, “She’s blind! Don’t you realize that?!?” The woman turned many shades of red as she apologized profusely.
I didn’t use a cane until I was in my 40s because I am stubborn and proud and I didn’t want pity or to be perceived as “the blind lady.” Even today, if I catch my reflection, there is a second before I realize the lady with the white cane is me. I’m not going to lie – it’s painful every time.
“But you ARE a blind lady!” my children and close friends remind me. I don’t feel blind, I don’t think of myself as blind, and people tell me I don’t “present” as blind. I don’t know what that means, but they intend it as a compliment, so I’ll take it.
It took me many years to get used to telling people “I am visually impaired,” or to ask any variation of “Could you please read this for me/tell me what coins these are/tell me what bus number that is?” As I mentioned, I am stubborn and proud; I hate asking for help. I can’t shop alone anymore because I can’t tell colors well, nor can I see what things look like on me because I can’t see my whole body in the mirror at once. I actually know every item of clothing I own by its feel, and my closets are consciously organized, but my husband still needs to make sure things match. I get cranky and combative when I think something matches and in fact, it doesn’t. I still put on make-up, but it’s pretty simple, and I ask my husband to do a “make-up check” to make sure I don’t look like a raccoon or a clown before I leave the house or go on a Zoom call.
I’m not going to sugar-coat the truth: my life is challenging. I haven’t been able to read regular font sizes for a long time, which made my life as a high school and adult Torah teacher hard. I believe “God sends the cure before the illness” because I am blessed with a very good memory, so as long as I put in the time, I am generally able to memorize the commentaries and texts I have to prepare.
I learned to tell my students about my disability on the first day and I warned them that if the blind teacher caught them with cell phones then they needed to be super ashamed for their total lack of finesse. I know that students occasionally took advantage and cheated; mercifully, most of them had enough respect not to. For years, I needed people to read my students’ exams to me, and my students knew that I would not read exams written in pencil or in any light color of ink. I also needed to ask them to hand me dropped whiteboard markers, for example, so I could continue at the board without having to stop and scramble around.
On the positive side of things, I became the unofficial liaison for students with not-so-obvious disabilities, and was able to explain to other teachers, students, and parents what it means to try to function as “normal” when you are not. I teach people with vision impairment simple life-hacks like using measuring cups that are different colors, filling a cup by sound, and counting stairs. I encourage people to practice saying “I am visually impaired; I need help” in front of a mirror, and to choose lipsticks in different-shaped tubes. Because I am impaired, I can speak from experience about not being bitter, about fighting depression, about empathy without excuses, about hidden disabilities, and about accepting what you cannot change. But there’s no getting around the reality of trying to be “normal” when you’re not. It is anxiety-provoking, stressful, and often just plain exhausting. So I allow myself — and encourage those I talk to who are struggling — to have occasional and short pity parties, minor meltdowns, and mental-health/avoid-the-world days.
Computers with magnification and color inversion settings and the universe of online resources have been game changers. But sometimes, reading and writing text messages can be a multi-step process. And even though speech-to-text works, just try it in two languages at once. Oh, and then you need to spellcheck anyway. Furthermore, snuggling up with my phone, with all its accessibility apps, isn’t the same as snuggling up with a paperback. Shabbat afternoons can be long when even large-print books aren’t large enough. That said, one of the greatest benefits of living in Israel is the Central Library for the Blind; I get to read Hebrew novels for the first time because they send them to me, free of charge and in HUGE fonts. Reading my way through both the classics and the more pedestrian works feels like a blessing.
Being blind in Israel is much easier than being blind in suburban New Jersey, where I lived before making aliyah. The obvious benefits are governmental support and the extensive (although not always reliable!) public transit. And while sidewalks with trees in random places are a nightmare, the whiteness of the Jerusalem stone facing of so many of the buildings I walk by regularly actually makes night navigation easier.
Most people I encounter really want to be kind and ask how they can help. Israelis aren’t shy; they are straight-shooters who are blunt and don’t coddle. We may be a dysfunctional bunch in some ways, but Israelis see everyone and treat everyone as family. There are guys on motorcycles who literally get off their bikes, stop traffic, and make sure I get across the street safely, and once, a security guard asked someone to cover for him so he could give me a ride to where I needed to go, rather than wait for a bus in the heat. At bus stops, people ask if I need help; I just tell them the bus number and they tell me when it’s coming. And then there are the ladies who take my elbow (without asking, of course), and help me onto a bus.
I don’t like being stared at, but I do appreciate the children who say to me or to their parents, “What is that? Why does the lady need that stick? And then I just tell them: “My eyes don’t work so well, and this stick helps me see where I’m going so I don’t step on you!”
I never, ever want to be pitied. I am profoundly grateful for the sight I do have, but obviously wish I weren’t visually impaired. I can’t hike the way I used to, or enjoy galleries and museums, or drive or bike. Crowds are really hard and so I don’t go to too many weddings anymore. I get grumpy and sad about all the “can’ts.” But I can still see the people I love and the flowers blooming, visit the archaeological sites that I’m addicted to, and watch the land I love out the windows of buses. I think I have a keener appreciation of the simple things.
Happy Blind Day everyone!