Tiara Blue's hearing aids allow her up to 60 percent hearing. (Tiara Blue)

(Editor’s note: This is the final installment of a three-part series on living with disability titled “Biting Hearing Aids.” Read part one here and part two here.)

TISHOMINGO — People get offended when I don’t answer them because they don’t know I’m deaf. That’s why my Granny Sue piped up, “She didn’t hear you.”

I swiveled around, hospital linoleum squeaking underfoot, to face the nurse discharging my grandmother after a scary kidney infection.

“Sorry,” I pointed to my hearing aids. “Even with these things, I can’t hear very well.”

She had a kind face, but a hesitant smile. A tug at her lips, as if something troubled her. A few minutes later, she revealed her grandchild had just been diagnosed deaf.

How cool! Being hard of hearing is a big part of who I am. That’s what I was about to say. But, before the words could leave my lips, she said, “[She] has a follow-up appointment. Can you pray they got it wrong?”

Half of the time, I mishear people, but the look on my grandmother’s face told me I understood. She was asking me to pray her grandchild’s deafness away.

I nodded because I didn’t want to add to her obvious distress. But I felt hurt.

Ma’am, being deaf is not a death sentence. That’s what I wanted to say.

But life has taught me knee-jerk reactions don’t sway people. Heck, half of the time, facts don’t sway people. But, sometimes, truth does. Truth on a visceral level. The kind of truth only reached when we share enough about ourselves that we transform from talking heads into human beings.

Sitting down at home, pen and paper in hand, I asked myself, “If I could re-do that conversation, what would I say? What is my truth?”

The Odd Ones

I am writing a middle grade/young adult fantasy novel about a group of southern misfits who proudly embrace what they refer to as their “God-given Oddities.” One of the central characters is a 6-year-old girl named Lark who joins her cousins and sister to navigate a magical world to find her baby brother.

She is deaf.



Chernobyl’s far-reaching impact: Life with disability not a linear path by Tiara Blue

The book is southern and irreverent and slightly bawdy. Through much of the process of writing this book, I have asked myself if I even had the right to tell her perspective.

Lark is fluent in American Sign Language. At the beginning of the book, I knew none. She grew up in a family that speaks ASL. I grew up with language deprivation. But at the crux of these conflicted feelings was this idea that I do not have the right to call myself “deaf” when I can still hear some sounds with a hearing aid.

I now have 35 percent hearing in my left ear and 45 percent in my right, which means I am aware of sounds, but I can rarely discern their meaning. I have navigated the first three decades of my life believing I am neither hearing nor deaf. Merely, a pretender in both realms.

What I didn’t realize is that I never had to choose.

About a year ago, I began following disability activists on Twitter, people like Nyle DiMarco, @NyleDiMarco; Imani Barbarin, @Imani_Barbarin; Andy Pleasants, @andyispleasants; and Chella Man, @chellamanart. Their reflections on living with disability gave me the language I needed to understand and define my experiences.

In the hearing world, I have heard the constant refrain: “Adjust.”

But among my disabled peers, an altogether different message emerged: “Come as you are.”

In November, via Twitter private messages, I reached out to Deaf In Media, which advocates for authentic Deaf representation, and they explained to me the difference between lowercase “d” and uppercase “D” in Deaf identity.

The lowercased “d” encompasses the range of biological hearing loss. It generally refers to those who have not learned sign language and view themselves as separate from the Deaf community. Whereas, the uppercase “D” identifies a culture, language and values.

Capital-D “Deaf” is a badge of pride. A nod to a community that covers a range of diversity. And, more and more, I believe, an invitation.

Deaf. DeafBlind. Culturally Deaf. Audiologically Deaf without knowledge of ASL. Hearing but with physical limitations to speech. Each person must decide for himself or herself how they identify: little “d” or big “D”.

I now realize why I am writing Lark in my novel. She is the character I needed as a young girl: a Deaf child who is not a stereotype. A Kombucha-loving, vulture-changing, future ornithologist who is silly and sweet and fiercely loyal to her siblings and cousins.

She represents what could have been and what still can be.

The last year and a half has been a coming-out process of sorts, a willingness to say — not only to the world —but to myself: I’m Deaf, with a big “D.”

I think of the 9-year-old girl who used to pray, “Let me stay just the way I am.” See, she had it all figured out. I’m only sad it took me two and a half decades to find my way back to her.

The grown-ups

One of the biggest hurdles to living with disability is well-intentioned adults.

I think of my mother who refused to teach me sign language because she wanted me to learn how to adjust to the real world. I think of the grandmother who asked me to pray her grandchild’s deafness away. People who try to force children to be “normal” who simply cannot be.


pretending to hear

Pretending to hear taught me how to live by Tiara Blue

If I could say anything to the adults, it would be this: I get that you are scared. Life has a way of throwing curveballs. And disability does make life a little trickier.

But, it’s not about us. It’s about that child. So we need to fill in the barriers.

Our world’s blueprint is incomplete, sketched and modeled by able-bodied people for able-bodied people. Sometimes the artists don’t like to hear constructive criticism. It’s up to us to push for improvements.

As I learned from an Imani Barbarin tweet on April 28, we owe it to our children to admit that, yes, their paths will have more obstacles, but they still have a right to dream. To speak. To feel free and whole, just as they are. The road to self-acceptance is tricky, but with the right nudge, it’s entirely possible.

There will be folks who put our children down, who try to undercut their self worth. But that comes with everything in life, whether a person be tall or short. Brown-eyed or blue. Smart or struggling.

Bullies are loud. But we can be louder.

We can teach our children that “normal” is a construct, and they define the parameters.

We can acknowledge the challenges but also highlight the perks. As Chella Man pointed out in an interview with Hearing Like Me, being Deaf is a shortcut to the good in humanity. A disability quickly demarcates those who possess empathy and respect for disabled individuals and those who do not.

My Deafness has created friendships that span decades. Formidable relationships, cemented with trust, because being Deaf weeded out the bad apples a long time ago.

We can introduce Deaf children to heroes in which they can see themselves. People like motocross champion Ashley Fiolek, actresses Lauren Ridloff and Shoshanna Stern and poet Raymond Antrobus.

Inspired by Alice Tyner and her grandson

Alice Tyner
Alice Tyner is learning American Sign Language to communicate with her grandson. (Tiara Blue)

We can also point out the heroes without the Twitter handles. People like Alice Tyner.

Alice works as a sacker at Sooners grocery store. She’s a pillar in our Johnston County community — a hard worker with a beautiful smile. One day, as I was checking out, I asked about her grandbabies. She told me her youngest grandson had been recently diagnosed as deaf.

My body clenched, bracing for the words to come. Please don’t ask me to pray it away, I thought.

Instead of speaking, she raised her brows, pointed to me, and with an index finger, gestured from her ear and lips.

“Oh, I’m sorry,” I replied. “I don’t know sign language.”

“Not a problem,” Alice smiled. “Maybe we can learn together.”

Little by little, we are.

She watches YouTube videos in the evening to better learn how to communicate with her grandson. I watch lessons on the ASL App. (I discovered the app through DiMarco, who is a collaborator.) I always use the turtle speed option, but, hey, I’m learning.

I’m learning for the little girl whose grandma is afraid. I’m learning for the little boy whose grandma is challenging the world to change. And I’m learning for me. So if I could redo that conversation in the hospital, what would I say differently? What is my truth?

I now know. I’d squeeze the nurse’s hand, look into her eyes and say, “I’m Deaf, so I can tell you with firsthand knowledge: Your grandbaby is going to be awesome.”