When SLJ asked if I’d be interested in writing a piece for Blindness Awareness Month, I had no idea of the profound direction this assignment would take me.

I was asked if I would like to discuss representation of books for children depicting visually impaired characters. Presumably, this was because my character, Petra Peña, in The Last Cuentista (Levine Querido, 2021), is a person with low vision.

I knew after some quick research that it wasn’t going to be that easy. I found no books.

One of the most frequent questions I receive at school visits is, “Why did you decide for your main character, Petra, to be visually impaired?” I only mention the name of this rare, genetically inherited eye disease, retinitis pigmentosa, aka RP, once in the book. But throughout, I show Petra navigating a frightening, apocalyptic, dystopian world while the progressive eye disease looms in the background.

Many assume this character detail is one I embedded from some writer spreadsheet or grid used to create a complex character. Those who know me more personally assume I chose this character detail because I’m an optometric physician and plucked the physical trait out of my medical terminology hat.

But the reason is far more personal.

Was I trying to create a unique character? Yes. Are there enough books with representation of people with low vision or who are visually impaired? No. Did I write a character with vision loss in my book to assist in that book world deficit? I wish I could say I did. Books with characters who are visually impaired are desperately needed. But none of those reasons would be true.

It had to do with creating a protagonist with strength of character. And this is where I need to explain.

The Last Cuentista is a middle grade book. I wanted to create a character who feels like most of us did at that age: Powerless. Questioning our ability to make change in the world. I wanted to show a young girl who persevered regardless of a physical challenge she faced in secrecy, and a family who tried to hide her vision loss from the world.

I chose to base this hurdle Petra faced on someone I knew well. Someone who also kept her loss of vision a secret. My mother.

My mother wasn’t formally diagnosed with RP until she was in her fifties. But she knew something was wrong with her eyesight even as a young girl. How could she have gone well into her adult life without a diagnosis? Even as a new graduate student in optometry school, practicing with my equipment at home, I could see the telltale dark flecks in the back of her eye.

I went back to school and told an instructor what I’d seen. We both knew what it likely meant. The instructor quietly got her an appointment.

When the final diagnosis came, from a doctor at my university, I knew everything was going to change for my family. I knew what the diagnosis for RP meant and could mean for generations to come. My mother was legally blind, and others in my family could follow.

As she was being diagnosed, I sat in the ocular disease laboratory and watched my shy, sweet mother hooked to electrodes. Because it was a teaching clinic, the students in that department all came to look. My mother smiled politely and occasionally cleared her throat. I knew she was nervous. But she didn’t want to embarrass me in front of my classmates and professors.

One after another, students marched in and ogled over her. Gasping, “Ohhhs.” Some nodded and said, “Thank you.” Some offered consoling nods. I wanted them all to stop. Did they not comprehend that this quiet woman was far more capable in life than any of us? A beloved kindergarten teacher, this woman they were gawking at as a medical case study, was capable of: wrangling entire classrooms five and six year-olds. Alone!

But my mom, a teacher through and through, just smiled and allowed us all to learn, using her diseased eyes as a tool.

At my university, I was a teaching assistant for Dr. Walter Chase, a mentor and friend. He taught me cool tricks like how to make my eyes move independently. (Ask me to show you some time at a party.)

A few months after my mom’s diagnosis, we were studying vision impairments in Dr. Chase’s class, and he had set aside the textbook and overhead projector. Instead, he’d created goggles simulating different forms of visual impairments related to varying eye diseases so when we were in practice, we would have an understanding and hopefully empathy for our patients regarding their visual challenges. Many were common, like cataracts, glaucoma, and macular degeneration.

When it was my turn to put on the goggles, Dr. Chase handed me my pair labeled “Retinitis Pigmentosa.” I stared at him, and he gave me a small nod of the head and a smile. As a friend, he knew I both needed, and dreaded, this smack of reality. I’d been tested, and while a carrier, I didn’t have RP.

I hesitated before slipping on the goggles. Then I looked back at Dr. Chase, but he was gone, replaced by darkness. I scanned until his face came into a pinpoint of vision. Thankfully, he turned and walked back into the lab, leaving me to digest the shock.

Students surrounding me, wearing various types of goggles, were giggling as they bumped into one another. But I was afraid to move, my vision constricted to a pinhole. I felt my way out of the room with my arms until I found a spot alone down the hallway. I didn’t even notice when another student exited and stood at my side. I stood in one spot and cried. Luckily, the goggles hid my tears.

But that day, Walter Chase had given me a great gift. Not just empathy for my mother and all other patients I would encounter who had vision impairments. But a gift to know how strong all these people I knew, and patients I would later come to know, were.

Yes, it was my job to give them the tools they needed to navigate the world. But they did not need my sympathy. These people were far more capable and stronger than most. My mother was one of these people.

I always respected my mom, but up to that point, I had not given her the credit she deserved.

She grew up and went to school like every other kid, and no one knew. She went to college and received a Master’s degree in early childhood education, and no one knew. She taught a roomful of rambunctious kindergarten and first graders, and no one knew. She navigated a world not designed for her—all the while, teaching my sister and I to have empathy for others and to never pass by someone in need.

In that single moment standing in the school’s hallway, I knew my shy, soft-spoken mother was the strongest person I knew. So, when I was given the opportunity, I wrote a character who reminded me in many ways of her.

Over the years, I have had difficult discussions with patients explaining that they were going to lose their eyesight. Society doesn’t sufficiently consider those who are diagnosed with forms of low vision that offer no cure. But my focus has always been on what tools are available to them at that moment. Just as I was taught by professors like Dr. Chase, I listen. Listen to what their dreams and goals for their lives are. Then we set to work on how to make that happen. But my mother never had that. Many others have never had that either.

I know my mother’s life was filled with fear and insecurity. But she never let it show. Looking back, I can see those moments now. With only a wordless, asking glance from her, I knew to take her elbow instinctually even as a young child, without understanding exactly why. We never spoke about it. It was something we knew she did not want to discuss or address.

And that fear she lived in? It was fear that someone would take away what she loved most. Teaching.

My mother’s strengths and fears were character traits I wanted to honor in my book. Aside from nonfiction biographies, I didn’t recall every reading a fictional children’s book with a visually impaired character. And with the rarity of retinitis pigmentosa, I was pretty sure I’d never come across a young reader who had RP like Petra.

But that is not what happened. And I didn’t have to wait long. While at a middle school visit in New York City earlier this year, a teacher asked if he could introduce me to someone. His partner, Ricardo, walked in. Using a cane, Ricardo approached. He had read The Last Cuentista and wanted to talk. Mostly, he had a question.

“Why did you choose to have this character with RP?” he asked.

His question caught me off guard. He knew what RP was. We had little time as we spoke and I signed copies of my book in between. I told him vaguely of my mother. But it was not an in-depth conversation. We had so much more to talk about, and I regretted that we didn’t have more time. But meeting him also opened a wound I hadn’t realized I had. Did he feel it too?

Many months later, when asked to write this article, I immediately thought of Ricardo. I struggled to find any books offering representation for someone like Ricardo; someone who as a boy would have needed books to see himself within the pages of a book.

I was nervous, but asked Ricardo for a meeting, and he agreed. As our meeting approached, my anxiety increased. It wasn’t until we began to speak that I understood why. I was about to reveal long held secrets. Secrets that belonged to my mother. Were they my secrets to share? Or were they my secrets too?

It turns out Ricardo understood. Our conversation was candid and emotional.

Ricardo Rivera is of Cuban and Puerto Rican decent. He has his PhD in anthropology from Berkeley and works as an ethnographer for the New York Public Library. Almost immediately, I could see that he too is kind and thoughtful like my mother had been.

For Ricardo, it all began when his older sister was diagnosed with a hearing deficit as a young child. At first, teachers explained her language deficits as a biproduct of growing up in a bilingual home. But an observant preschool teacher referred her to an audiologist, and she was diagnosed with hearing loss.

Shortly after, as a baby, Ricardo was also diagnosed with hearing loss. Finally, when Ricardo and his sister were teenagers, his family learned the full story. Both were diagnosed with Type II Usher Syndrome. This condition expresses genetically with mild to severe hearing loss from birth and progressive vision loss due to retinitis pigmentosa.

Ricardo bravely spoke of things I know my mother felt also, but never said aloud. “My family didn’t tell people about our diagnosis. There was fear and guilt. A dark cloud hung over us like retinitis pigmentosa was a shameful curse. A tragedy.”

I nodded along in understanding. How was his family’s story the same as mine?

Ricardo also shared that he confronted his own denial of his vision loss only recently.

Like my mother, he was afraid to ask for help, only shared his need for assistance at times with those close to him. I discovered that just like my mother, he’d been stubborn; not wanting to be seen as a “blind person.” But also, not wanting others to know.

I shared with him how instinctually from a young age, I took my mother’s elbow on steps, escalators, curbs. Ricardo spoke of how it took him time to ask someone if he could hold their arm in a crowd or help him navigate across campus at night.

Only now as an adult, is he unleashing his feelings of grief. “On my worst days, I just want to be ‘normal’,” he said.

We spoke of this, and the secrets our families held. We cried.

“Did you ever see or hear any representation of a visually impaired character in books growing up?” I asked.

Ricardo considered. “I don't think I ever read a single book with a blind or visually disabled protagonist. I probably never read a single book with a protagonist with any kind of disability! At least nothing comes to mind that I can remember.”

I asked Ricardo if he ever wonders how he might feel now, if he’d been able to read a book representing a character with retinitis pigmentosa or other visual impairment as a child.

“I do wonder what it would be like if I’d been raised with a positive orientation of disabled people in history. What would my relationship to my grief be?” he asked. “But those books didn’t exist at the time. I was probably getting into the weeds while reading The Last Cuentista in part because it was literally the first time I had ever read anything where a character had RP, let alone a vision disability in general. I thought it was such an amazing depiction of a protagonist with a disability because her access needs and aspects of her disability became crucial to the plot and to her character development as opposed to being either a pity story or something that fades into the background. It really felt like it reflected the role that RP plays in my own life too. It's something that fundamentally shapes my experience of the world while at the same time just being one characteristic of mine among many.”

Ricardo and I spoke more about “medical model of disability” vs. the “social model of disability,” and how in the former, movies and books have a troubling history of “fixing” a disability instead of showing the character navigate the world in which they live.

So, was I the right person to write a character with retinitis pigmentosa? For now, I think so. But my hope is that soon, there will be far more representation of characters in the visually impaired and low vision community, written by those who have lived experience.

In the end, did I get it right? I don’t know. I never got the chance to read this book to my mom before she died. I shared with Ricardo my fears and regrets on this. He reminded me that RP comes in many forms, “Seeing a character like Petra woven into a futuristic world…one in which RP is part of who she is, but it doesn’t define her. Blindness doesn’t have to be about grief and loss. Like the character in your book, in a way, it’s her superpower.”

Since speaking with Ricardo, I’ve thought a lot about the history our two families shared. So much grief and loss and shame. And while unintended, I rewrote that history for at least the two of us.

But I hope a child with any vision impairment will know that this character, Petra, was for them. Written for kids like my mom or Ricardo had once been, so they will know they are not cursed. Their stories are important. And perhaps one day, they will write these stories, so there are too manyexamples of children’s books with visually impaired characters to list during Blindness Awareness Month.

Donna Barba Higuera's novel The Last Cuentista won the 2022 Newbery Medal. Her most recent releases are the picture book It’s Navidad, El ­Cucuy! illustrated by  Juliana Perdomo, and the middle grade novel Alebrijes. a companion to The Last Cuentista.