That wasn’t the first question from the audience of blind adults during a Zoom talk I gave recently. But it was one of the most heartfelt I’ve answered in 50 years. I’d begun by telling them my blindness story, and their questions flew. Familiar questions, like the pluses and minuses of a guide dog compared to a cane. My answers slid out easily, automatically.
But within 15 minutes, one question changed everything — cutting to the deepest and most sincere concerns.
“I’m 38 years old, so my biological clock is ticking.” She hesitated. “I want to ask something, but I’m afraid I’ll hurt your feelings.”
I pictured every participant leaning forward.
“Well, do you ever feel guilty about having kids? Did you worry they could go blind? And also, you couldn’t drive them places or do many things a sighted mom could do. Do you feel your kids were deprived?”
First, before answering, I asked her a question myself and learned that this woman had been born blind from a health condition inherited from a parent. She worried she, too, could pass this problem to a baby.
“No one has ever found the source of the retinal hemorrhages that caused my blindness,” I began, “even though I saw medical experts in three corners of the country. My deafness is a mystery, too.” I paused. “My husband and I wanted kids, So, we asked specialists whether or not we should have them biologically or adopt. The ophthalmologist who had followed my case the closest said, ‘No one has ever told me what happened to you, Sally. We all have genetic deficiencies. Don’t impose another loss on yourself.’”
I continued, “Following that advice, I delivered our son a year later, but you can bet that my first question was, ‘How are his eyes?’ Had he or our daughter, arriving three years later, been born blind, I definitely would have felt guilty. Should they ever develop vision loss, I will be sad. But my husband and I gave them life, and they’re grateful.”
To the woman’s second concern, I said, “Certainly, I couldn’t drive them places, though my brother maintains that I could drive as well now as I did with sight.”
“But I took them on buses and walked lots of places with them. My kids often introduced their friends to public transit skills, bussing to a Pirates game, for instance.”
I then went on to explain that I took charge of the small motor activities, art projects, music, baking, while my husband supervised the large motor pursuits, like bike riding. I also was lucky to be able to afford babysitters and use their help creatively — hiring them to accompany me and the kids to playgrounds.
I added: “Disability improved my parenting. Blindness made me a better listener; my ears were my antennae, so I hung on my children’s words. Touch also was a lifeline, so I held them and had much more physical contact with them than if I’d still been sighted. Blindness impacted my discipline, too.”
Then, I told this story: “I’d vowed not to spank as a parent, but when my son and a friend had a pillow fight and broke my Hopi pot, I swung. The bottom I collided with, however, was his friend’s, not his. And my swat occurred beside the open front door, which the boy’s mother was opening.”
Now everyone laughed.
“Fortunately, she had a good sense of humor and didn’t report me to Child Welfare.”So, did I feel guilty? I said to her and the others: “I think every parent feels guilt. Any area of child-rearing offers blame-worthy opportunities that our kids can seize. But do I feel guilty about having them blind? No. I think all of us with disability bring gifts to our kids we wouldn’t possess without it.”
“Interesting,” the woman said. “One more thing — I’ve lived with my boyfriend for four years, and he’s worried. Does your husband ever feel you’re a burden?”
Oof! I sucked in a deep breath. I retrieved my husband and had the woman repeat the question.
“No,” Bob said immediately, like a dutiful husband.
“Not that he’s said directly anyway,” I said, “But he sometimes forgets to push a chair back under our dining room table, and I slam into it. …And I accuse him of passive aggression.”
Bob laughed. “Seriously, Sally does all the cooking, so I do all the dishes.”
He moved his chair closer to me. “And we talk—all the time—working out the balance.”
I interrupted. “I do think Bob does more than 50% of the tasks in this marriage. I’m the debtor. But a friend told him when we were engaged, ‘Just don’t have kids, because you’ll have to do all the child care.’”
Bob broke in. “But that’s where the balance skewed in Sally’s direction.” He spoke of the times I took the lead with the kids while he furthered his career, how I left my job as a teen therapist to stay home. Basically, it’s about talking. Bob said to the audience: “I didn’t marry Sally 47 years ago to be her reader. I have my work. She has her writing and teaching. A burden? Ball and chain? Never.”
People laughed and hooted. Then, someone else cleared his throat at the mic. I braced myself for another probing question.
“How did you keep going?” he asked. “How do you keep going?”
My throat swelled, and I couldn’t speak for a minute. Many of the people in this audience were like me 50 years ago — facing a huge life change, a change in status, identity, career, relationships. They were struggling just to put one foot in front of another.
“Initially, the timing of my blindness was good. I was 26, with college under my belt, three years of teaching, and my ego somewhat intact. I’d lived 3,000 miles away from family, so had adjusted to a new environment, found friends, found a life. I also had amazing and supportive friends—one who came to the L.A. hospital every day, one who came to the New York hospital every night—and I was often hospitalized for three weeks at a time. I had a supportive family. Plus, two-thirds of my life was ahead. I felt forced to adjust. And I had the elasticity of youth. Family and friends expected nothing else than that I’d adjust. And frankly, government-funded programs were plentiful—four months of state-financed rehab, government fellowships for grad school that paid the university, plus my rent and food. Finally, Pittsburgh is a comfortable city with public transportation and diversity. All that helped me find my way forward.”
I swallowed. “And now, how do I keep going? This is a statement I’ve made so often, but it’s true, nevertheless. Blindness enlarged my life. It made me stronger, more hard-working, more disciplined, organized, empathic, self-aware and purposeful. Blindness exhausts me sometimes. But having kids and grandkids, a terrific husband, siblings and great friends — all give me joy. Humor helps, and I’ve known so much goodness in an often-cruel world. I want to keep going on, sharing that goodness.”
Sally Hobart Alexander is the author of many essays and eight books. Six books were Junior Library Guild selections, and one, “Taking Hold: My Journey into Blindness” won a Christopher Medal. Having taught in Chatham’s MFA program, she now leads a writing group, accompanied by her guide dog (Instagram: @davetheguidedog). If you want to send a message to Sally, email firstname.lastname@example.org.
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