Future Reflections        Summer 2012

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Powder Blue Blindness

by Mindy Heppe

Mindy HeppeFrom the Editor: Mindy Heppe serves as pastor to two tiny Lutheran churches in Shenandoah, Pennsylvania. She has taught in Ireland and Lithuania, and she is a member of the board of the Pennsylvania Parents of Blind Children. She is the mother of three children through international adoption.

Sometimes I have been accounted precocious. When I wasn't yet two years old, I climbed onto the roof of the neighbor's chicken coop. I started college just before I turned sixteen.

On the other hand, I've been a bit slow here and there. I never got around to having kids until I was in my forties. And I was fifty-two before I figured out that I am blind.

My son, Yang (affectionately known as the Yangster), led me to the NFB. When he was seven, he ran into the same parking meter three times in one summer. I don't know why that particular meter kept planting itself in his path, but after the third collision I decided it was time for him to get a white cane. The problem was that I didn't know where to get one. At that time we were homeschooling. In our district, that meant we received no services from a teacher of the visually impaired (TVI) or an O&M instructor. (I know it's against the law, but that's a story for another time!) At first I thought a white cane might be a piece of medical equipment that required a doctor's prescription. Then, when I started a web search, one resource jumped out at me--the Free White Cane Program sponsored by the National Federation of the Blind. Well, that caught my attention!

I ordered a cane for my son and another one for myself, to help me teach him. I downloaded Tom Bickford's book, The Care and Feeding of the Long White Cane, and Yang and I figured out the basics. Although he didn't use the cane often, Yang had another tool in his kit.

Two years later, our state vocational rehab folks had some extra money to spend, and they asked if Yang needed anything. I suggested they provide him with some cane travel instruction. An O&M instructor came out to visit us. She gave Yang a few pointers, but she declared that he was doing fine on his own. Because Yang has some vision, she didn't seem to be interested in teaching him.

Meanwhile, I kept reading the NFB webpage. I discovered the Junior Science Academy (JSA), a week-long summer program for blind middle-school students and their parents. Yang and I attended the JSA and had a fine time. Yang found himself amid an army of kids with white canes, and he began to identify himself as blind. (He liked the science, too--for years his stated career goal has been aerospace engineer.)

Yang Heppe with Anil Lewis at the 2011 LAW Program.I enjoyed the program, but I went home feeling somewhat unsettled. When the parents made Jello salad under sleepshades, I didn't have any of the revelations that seemed to be going on around me. What was going on? When I spilled some water putting ice-cube trays into the freezer, I grabbed paper towels and cleaned up. I thought that was the obvious thing to do, but our mentors were audibly impressed. Apparently I'd been using some nonvisual cooking skills without realizing it.

Yang and I both have albinism. When I adopted him I was startled to discover that albinism is considered a special need. I have considerably more sight than Yang does, but it is what some of us with albinism have dubbed "crap vision." People with albinism have atypically developed retinas, optic nerve hypoplasia, and nystagmus--the uncontrolled eye movements that are an ongoing attempt to focus. I don't drive, and Vocational Rehab picked up a fair chunk of my college tab.

I had a TVI when I was in school, and we had marvelous discussions. She showed me some Braille books, but as a student I read standard print without magnification. I continued to do so until middle age, when a condition called presbyopia hit me a bit harder than it does some folks. Now I'm all about magnifiers (although the tradeoff is that I can now read road signs, which came as a bit of a shock).

The upshot of all this history was a state of confusion. I went through life feeling it would be presumptuous of me to think of myself as blind when I can see so many things.

Two years after our JSA experience, Yang and I attended the NFB's Leadership and Advocacy in Washington (LAW) program. To watch your twelve-year-old functioning smoothly as part of a team advocating on Capitol Hill is one of those bust-your-buttons-with-pride moments!

However, although he was game, I realized that Yang still had some challenges self-identifying as blind. And I knew why. It was because I didn't identify as blind myself.

Near the end of the LAW Program I took aside a very gentle, totally blind Federationist and told him my story. Then I took a deep breath and asked, "So--am I blind?"

"Yes, you are," he replied without hesitation. He went on to deliver a useful metaphor. "So maybe you're powder blue and I'm navy," he said, "but we're still both blue."

I got it. Then, of course, he asked me if I wanted a cane. Well, yes! I left the program with cane in hand, a fifty-two-year-old brand-new proudly blind person--and a better role model for my blind son.

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