I entered this world two months early, weighing only three pounds, and quickly lost one whole pound. It was 1952. My mother was a smoker who had lost two babies before I was born. I was diagnosed with retinopathy of prematurity, a visual impairment common in premature or low-birth-weight infants, in which blood vessels swell and grow over the retina, the light-sensitive part of the eyes. Some babies with ROP get better even without treatment. But some, even with treatment, go blind.
I was one of the latter group. Although I’m considered “legally” blind, I prefer the term “partially blind”—even though it’s a small part: I have less than 10% of normal vision. What a fully-sighted person sees at 200 feet, I see at 20 feet, and my field of vision is narrow, unreliable, and worsens under glare. From my right eye, I can see only peripherally and in bits. For example, I see faces, but not details like eye color. It’s hard for me tell, especially with children, if I’m looking at a boy or a girl. When there’s a group of people near me—even people I know—it’s difficult for me to distinguish who is who.
I’m not here and not there—not fully blind, not fully sighted. A blind child is taught adaptation skills such as cane travel and braille from the start. I wasn’t. I spent my early years figuring out how to get by on my own. I developed skills I still use. For example, when I meet people, I pay attention to their voices, to how heavy their footsteps are, how quickly they walk—and remember them that way.
My father died of polio when I was two and a half. I don’t remember him. My mother was shattered by his death and couldn’t talk about him. No one did. It’s a painful void that never closed.
Even as a preschooler, I was different—and not only because of my vision impairment. Blind was the only way I knew how to be, and I got by just fine around the sighted kids. What set me apart was the way I questioned what I was told and constantly pushed for more answers, for more depth. I know now that it was my neshamah calling out, seeking the truth.
There weren’t many Jews in Raleigh, North Carolina, in the 1950s. We weren’t Jewish—my parents were Protestants. My father’s family had emigrated from Germany in the 1880s. (When I learned about the Holocaust, I worried that perhaps our relatives who’d remained in Germany had supported Hitler. It was a great relief to discover later that just the opposite was true—a tree had been planted in Israel to honor a member of our family for being a righteous gentile.)
When I started first grade in public school, I recognized that I had to work harder than the other students in order to keep up. The Individuals with Disabilities Education Act, IDEA, which was passed in 1975 to ensure that children with disabilities were given the support they needed through the public school system, came a little too late for me. I was placed in a mainstream classroom, where the teachers didn’t make any accommodations. I learned how to read just like the other children did; the words were small and the print large. When I held the books close to my face, I was able to make out the letters.
When I reached third grade, I could no longer keep up with my classmates because I couldn’t see the letters or numbers in the schoolbooks. Around that time, my mother remarried, and our somewhat chaotic home life became more settled. However, my mother worried a lot about me and tried to protect me, and she didn’t want to let me play outside with the other children. She meant well, but I ended up having a hard time making friends.
Frustrated, I acted out in class; I talked, chewed gum and passed notes. My parents switched me to a private school, but the problem remained: I couldn’t see well enough to learn in a mainstream classroom. My misbehavior escalated until, finally, my teacher told my parents that I needed to learn braille.
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