I Wrote About My Deaf Son. A Sensitivity Reader Called it Dangerous

My first picture book is coming out soon. I should be excited, but I feel a slight dread.

I was told I had no right to write this fictional story inspired by my experiences as a hearing mother of a deaf child with bilateral cochlear implants.

The protagonist of the picture book is a boy with cochlear implants, like my son. Up to the decision for cochlear implants through to today, I have always wondered what my son's experience of sound is like.

This wonder is not just about hearing, typical or atypical. It's about understanding how one's child interacts with the world, with friends, with each new experience.

This wondering is part of the fabric of motherhood; the deep desire that everything be as perfect and easy as possible for these parts of ourselves that are now living and breathing outside of our bodies, subject to many things that we cannot control.

All mothers do this, and I also do this with my daughter who has typical hearing.

During the process of publication, I was happy with and supportive of the publisher enlisting a sensitivity reader, a careful critic who would ensure that the fictional story is reflective and respectful of deafness.

The sensitivity reader was adamantly opposed to the book, with one of their main reasons being that I, as someone with typical hearing, should not be the author of a book with a deaf character.

This sensitivity reader, who remains anonymous to me, shared that, as a Deaf individual who is fluent in American Sign Language, they felt that a story about a deaf child should be written by a deaf author—and others hold this same opinion.

I had always wanted my son to be involved in the writing of this picture book. But when I started writing it, he was only eight years old and not interested.

With the publisher's support, I asked my then 12-year-old son for his input, and we discussed and edited the story line by line, together. The book morphed into a joint project, which is a wondrous thing to me.

Sadly, the sensitivity reader took offense to this as well, suggesting that the involvement of my son perhaps entailed some level of coercion.

I do ask my kids to do things they don't always want to do—what parent has not? Think of potty training, teeth brushing, vegetable eating—the list can go on and on. Each child is unique.

I had explained the sensitivity reader's desire for a deaf author when I asked my son if he might want to be a co-author. He was willing, for me, and I believe most parents have experienced that as well.

Just as parents do things out of love for our children, so do our children, the older they get, extend the same grace and consideration to us. If this kind of love is exploitation, I would say the world is better for it.

And yet, about a month till publication, I feel wary.

I worry about how the book will be received by the public. Will they feel the same as the sensitivity reader? And of course, this is universal to mothers. We worry. We worry about a lot, big and small.

I worry that the sensitivity reader called this fictional story "dangerous".

She did not like the fact that the protagonist has cochlear implants and says that he can "hear". We changed that line, at their request, to the character being able to "hear sounds".

Then and now, to "hear" vs. to "hear sounds" does not seem materially different to someone like me, with typical hearing, or to my deaf son. Because it mattered to the sensitivity reader, we changed it.

I believe words do matter. I believe all our stories matter. I know the sensitivity reader has their own story that I do not and cannot fully know. And I believe it is the differences in our individual stories that make us stronger.

Deafness has a whole host of choices around it, and it is absolutely true that cochlear implants are not a cure for deafness or even the best option for all deaf individuals.

I am not a part of the Deaf community, and yet I do know that many in the Deaf community, especially before 2006, were opposed to cochlear implants.

The Deaf community does not see Deafness as a medical problem, and Deaf individuals often celebrate when they have children who are also Deaf, as did Nyle DiMarco's family. I fully respect this attitude, and I took it into deep consideration before my son's cochlear implant surgery.

I fear that my son will someday regret the choice made for him; that he will eschew the hearing experience. Of course, this can be true for any crucial decision made for a child by a parent.

Ever since reading Far from the Tree, Andrew Solomon's amazing book that defines vertical vs. horizontal identity, I can more fully articulate that deafness is a major part of my son's identity, a horizontal identity that I cannot share.

And again, this is a universal parenting experience—no one has children that share all the same identities as the parents.

Yes, like my parents, I am ethnically Korean, as are my children; this is a shared vertical identity over three generations, an identity that extends back to my parents' ancestors. But unlike my parents, I am Korean American, a horizontal identity that I share with my sister, but not my parents who often told me that I was not "truly Korean", much to my chagrin.

Because it is and was nice to feel less alone through a shared horizontal identity with my sister, I hope the Deaf community and deaf/hard of hearing individuals will embrace this book, but more importantly, my son.

My intent was never to offend the Deaf community; rather, I wanted to add to diversity in books, wanted my son to see a character in a picture book that has cochlear implants, wanted more people to be able to recognize what a cochlear implant is and is not.

As a mom, the most important thing I've learned from my son's journey thus far is that he is both deaf and not deaf.

Without his cochlear implants, he is deaf. With his cochlear implants, he can hear, but it is not perfect. The equipment can break down, and listening is harder for him than it is for someone with typical hearing.

My son is part of the hearing world and a world of utter silence, and he is comfortable with this. He has choices.

I think all mothers will relate to this—that our kids are often wiser than us. It's been more than a decade since my son had his cochlear implant surgery, and it's taken all that time, as well as a five-year picture book publishing journey, for me to feel comfortable.

I still have worries and a niggling sense of dread. But I hope that diverse stories will lead to greater connection, especially if we stay curious.

Christine J. Ko, MD serves as a Professor at Yale University and wrote the book How to Improve Doctor-Patient Connection based on her experiences as a physician and mother of a patient. Her picture book Sound Switch Wonder, will be out on November 21, 2023.

All views expressed in this article are the author's own.

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