Having a Disability Isn't Fair

Growing up with dyslexia wasn't easy for my daughter, but perseverance helped pull her through the quit-worthy moments.

By Alisa Greenbacher, PJ Publishing Author


This story appeared in the December 2022 issue of PROOF, a PJ Library magazine.

A woman and a girl “I was certain the same question was on both of our minds: How much longer would she have to endure this before she could read effortlessly on her own?” Illustration by Jen Jackman White

 

The children's library is sun filled and quiet. I recline in the velvety blue chair surrounded by picture books on shelves. I try to stay out of sight. My 8-year-old daughter is being tutored, and just behind the bookshelf, I can see her shifting uncomfortably in her seat, pulling and twisting her hair.

This was a common scene for my daughter and me. She was diagnosed with dyslexia at 7 years old, and we chose intense intervention, an option we knew we were fortunate to have. Starting in first grade, she sat with a tutor three to five times a week for one hour after school and during summers. In what feels impossible in retrospect, my daughter, now 17, was tutored consistently for six years.

Dyslexia is a language-based learning disability that affects one's ability to interpret the phonological (sound) components of language. In my daughter's case, it also takes her longer to process an object or letter.

Having this learning disability made almost every aspect of school difficult: social studies, science, math — anything that required reading content. For my daughter, it also made reading out loud in front of other kids embarrassing.

“It's not fair,” she said one day after tutoring.

“I understand,” I said. “Having a disability isn't fair.”

I am hearing impaired, and we often talked about the parallels between our disabilities, including the self-consciousness that comes from being seen as different. As a parent, I wanted to take away the anxiety and the struggle. Not being able to fix things made me feel helpless at times. At other times, like that day, I felt my cheeks flush with anger.

Like we did so many times after a tutoring session, we went out for ice cream at our favorite dairy farm. Nearby, newborn calves rested in hay.

On this day, my 8-year-old daughter's face looked particularly defeated. Her eyes were tired and worn. I was certain the same question was on both of our minds: How much longer would she have to endure this before she could read effortlessly on her own?

“I'm so dumb,” she said.

I had long feared those words. The stigma around people with dyslexia is that they lack intellectual ability. Stigmas around any disability can eat away at one's self-esteem. In some ways, this was going to be the real work — helping her to not internalize negative stereotypes.

I lifted her chin so she was looking right at me. “You are smart,” I said. “And you have perseverance. That is something to be proud of. Not everyone has that.”

In all those years complaining about dyslexia being hard, I never heard her say it was too hard. I once read a study that claimed resilient kids are more likely to have heard stories about how their ancestors overcame hurdles. I took a deep breath and gave it a shot.

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“You come from a long line of people with grit,” I said, unsure of whether I was headed in the right direction. I reminded her that my grandma Estelle, the inspiration for my daughter's middle name, had escaped violence against Jews and started a new life in a foreign country. I told her about her other great-grandmother Sophie who, as a young girl, lived in a crowded tenement apartment in New York with seven other people. Her father had worked six long days per week until the family could afford to move to a better home. These are stories of perseverance, I told her, of not giving up in the face of adversity.

I could tell she was listening because she was sitting up straighter. I wanted to tell her that gevurah, or inner strength, was the underlying theme in all Jewish history, but I stopped short of saying that. I didn't want to unload the weight of that history.

Soon we walked over to a calf and marveled at new life. Struggling to prop itself up on its skinny legs, it walked toward us. “You can do it!” my daughter yelled. The calf poked its nose through the fence and nibbled my daughter's hand. We laughed for the first time all afternoon. As we left, she gave the calf one last encouraging scratch.

Today my daughter reads effortlessly. But disability does not go away. These days, her work is to self-advocate. She has learned to say to teachers, “I have a learning disability, and I'm going to need more time on this assignment.”

I asked her what advice she might have for other kids with dyslexia. She said, “Having dyslexia doesn't mean you're dumb. It just means you have to work harder. Stay positive and don't give up. Most importantly, once you can read fluently, reading books opens a whole new world.”


Alisa Greenbacher is a freelance writer and coauthor of the PJ Publishing book Sign Language Shabbat. She also has two alumni PJ Library children.