The Washington PostDemocracy Dies in Darkness

My daughter’s hidden disability

When others understand what it’s like to parent a child with a rare type of hearing loss, the world can open up for everyone

The author's daughter, Camille, who has a reverse-slope hearing loss. (Heather Meyer)
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With bright blue eyes and a head full of blond ringlets, 5-year-old Camille elicits the attention of strangers on a regular basis.

The interactions often go one of two ways: A person compliments Camille, and she stares back at them deadpan. As the attempted conversation draws to an awkward halt, I jump in to explain that we are both hard of hearing. Because Camille chooses silence when she can’t comprehend spoken dialogue, people interpret her speechlessness as lack of intellect, but that is far from the truth.

Other times, if the person has heard Camille speak, they’ll exclaim, “She doesn’t sound deaf,” followed by a question that implies her hearing loss must not be substantial. Yet unaffected speech is characteristic of her type of hearing loss, which makes it undetectable to most — a hidden disability, and one that we are forever justifying to strangers.

As our society begins to pay more attention to the importance of diversity and the need for inclusion, my hope is that our family’s experiences can shine a light on the deaf and hard of hearing — and all that we have to offer.

My daughter’s tween ’tude is a welcome reminder that she’s so much more than her disability

Camille has a reverse-slope hearing loss (RSHL), which means her loss slopes up from a moderately severe loss in low frequencies to normal hearing in high frequencies, which is the reverse of most losses. She can hear high-frequency consonants but struggles with low-frequency vowels, consonants and letter combinations. This condition affects about 3,000 people in North America, compared with millions who have high-frequency loss. Because it is rare and speech is often unaffected, reverse-slope loss is challenging to both diagnose and treat.

In addition to hearing aids that amplify sounds that are difficult to hear, Camille uses a combination of self-taught techniques to compile auditory information: reading lips, noticing inflection, analyzing body language and observing facial expressions. Her conversational pauses are spent piecing together visual feedback and the consonants she did comprehend to figure out what was said.

When Camille’s hesitation transitions to unbroken silence, I know she has too few clues to understand. I repeat what was said using techniques to improve comprehension, such as leaning in so the speech sounds are closer and squatting down to her eye level so she can see my lips clearly. I speak a tad slower and enunciate clearly. I do not speak louder. If we are in a noisy environment or she asks for repetition again, I supplement with sign language, which we are learning together via books, websites like LifePrint and social media (our favorite is deaf TikTok). The more we learn, the easier communication becomes.

Once Camille is looped in to the conversation, she responds appropriately and then launches into whatever happens to be at the forefront of her mind: L.O.L. Surprise dolls, soccer camp, her impending birthday, a favorite movie. Her vocabulary, attention span and patience are that of an older child, and she loves to be in charge — and to be right. Stubbornly digging in, she will swear up and down that her incomprehensible lyrics to a song are the “right” lyrics. Her goofy catchphrases and invented songs elicit laughter from those who know her well, and she already has her future planned: She will become a “baby and kid doctor.”

Surprisingly, as a toddler and preschooler, Camille was painfully quiet and reserved. Over the past year or so, even with the global pandemic, she has blossomed. I suspect this is in large part because of her hearing aids. They have given her access to sounds that were out of reach, thereby improving her communication and confidence.

While our deafness presents daily struggles in the hearing world, it has also equipped us with useful skills. We are excellent listeners who maintain unbroken eye contact because we are reading lips and facial cues, and we are effective problem solvers because our everyday life is one verbal puzzle after another. We are empathetic because we intimately understand how it feels to be an “other.” We can gauge a situation almost instantaneously by reading body language, and as we can’t rely on our ears, we are experts at figuring things out with limited information. This has always been our world, so it’s normal for us, and I don’t view our hearing loss as a disability. When I asked Camille how she felt about being hard of hearing, she scrunched up her face in a look of confusion and queried, “Huh?”

Daniel Maier, a deaf linguistics expert and doctoral student at Gallaudet University, expresses a similar sentiment: “The word ‘disability’ isn’t something I use to describe myself, but this doesn’t mean I’m not aware of how physical differences impact how I interact with the world and the people around me. At the same time, I feel that the concept of ‘disability’ is a part of the systemic ableism that is pervasive in society.”

Camille will start kindergarten this coming school year. We can either mainstream her in public school or board her at the state deaf school, which is nearly three hours away. Our metropolitan city does not offer American Sign Language (ASL) courses for kids, and despite my repeated requests for Camille to learn sign language in school, it has not been written into her individualized education program (IEP). Instead, her main IEP goal is to advocate for herself so she can “learn to function in the hearing world.” Essentially, this includes preferential seating and asking for repetition.

I know her intervention team means well, but the reluctance to teach sign language frustrates me. As a former teacher, I understand it’s about resources and perceived best practices, but frankly, it’s not what’s best for Camille. Our hearing loss is too substantial to be a seamless part of the hearing world, but without sign language, we can’t communicate with the deaf community. From the school district’s refusal to include sign language to the exorbitant fees for a hearing test to the uncovered costs of hearing aids, it feels like an uphill battle. The implied message is an ultimatum: Be quiet and assimilate or spend your life fighting for acceptance, inclusion and equity.

I don’t know what my deaf child is going through. ‘Wonderstruck’ helped me understand.

“While bodily differences can have minimal or major impacts on a person’s ability to interact with the world, the concept of disability is fluid,” Maier says. “Is a deaf person truly disabled if that person can communicate, work and live in an environment where full access occurs, such as an all-signing environment? If so, then where is the disability? Some people would say that doesn’t represent the real world, but who has the right to determine that? We all need to do the work to unpack internalized ableism.”

Our personal experiences are a micro-example of a larger problem: Deaf and hard-of-hearing accessibility is often not considered, even when affordable and simple solutions are available. Instead of encouraging the deaf to assimilate to the hearing world, instead of omitting us when inclusion is equally viable, instead of making sign language inaccessible, what if we began thinking of deafness as a gain? What if we could take the position that all individuals would be enriched by diversifying their lives and being more inclusive of those who are different?

We all want better lives for our children than the ones we had, and I want my daughter to grow up in a world that accepts her for who she is in all her magnificent wonder. I hope for a world that is equally accessible for kids of all abilities, races and gender expressions — a world where being different can be a boon instead of a burden.

Erin Schoen Marsh is a writer and yoga teacher in the Midwest who specializes in writing about parenting, education and social equity. Find her on Twitter @theyogiwriter.

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