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1.
How I Failed My First Test the Day After I Was Born
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THE DOCTOR ROLLED A MACHINE into the room and parked it at the foot of my momās bed, next to a pair of bassinets with stainless steel legs and transparent plastic cradles. Inside the bassinets were my brother Nico and me, both of us just a day old. The doctor unspooled wires from the machine and reached down into each bassinet to stick little felt-pad sensors on the sides of our heads, near our ears. He turned back to the machine, pressed a button, and heard a beepāthe test had started.
Through the clear walls of the bassinets, my mom watched her babies with weary eyes. Nico, my ginger-haired twin, had emerged swiftly and without any issues. Mom and Dad cried and laughed as they saw the first of their twins, a baby with fair skin and hair so light you could barely see the strands in his brows. Mom couldnāt celebrate for long, though, because I was still holed up far inside the womb, with no inclination to listen to my motherās pleading for me to come down and out into the world. Mom pushed and pushed, the clock ticked, the doctor and nurses began to worry. Dad clutched my momās hand and urged her on. Mustering up all her might from a depleted reserve of strength, my mom tried one final time to push me out.
But I would not budge.
The doctor put a stethoscope to my momās belly and listened close and his eyes suddenly darkened. Everybody out, he ordered, and the nurses ushered Dad away from the bed. Mom asked, āWhy, what was the matter?ā
The doctor started to speak, and Momās eyes moved to his lips.
The year was 1989. Hospitals werenāt required to provide American Sign Language interpreters to Deaf people who requested them. The Americans with Disabilities Act, the landmark legislation that required businesses and service providers in the United States to offer reasonable accommodations for people with disabilities, would not become law for another year.
Without an interpreter, my momāhours deep into laborāpaused her rhythmic breathing and pushing to wipe strands of her deep black hair out of her eyes and get a clearer view of the doctorās mouth to read his lips.
āThe babyās heartbeat,ā she read.
I had overstayed my time in Momās womb: my oxygen levels were critically low, and my heartbeat had slowed to a faint, weak rhythm. It was an emergency; my life was at stake before I had even tasted fresh air.
Mom watched as the doctor brought a surgical knife to her belly, and then a nurse put a clear mask over her face and everything went black.
Twenty-one minutes after Nico was born, the doctor pulled me out into the world.
Hours later, Mom woke, her mind still mushy and her vision cloudy from the anesthetic. She squinted, seeing three blurry fingers, then opened her eyes wide to bring Dad and my older brother, Neal, into view.
THREE BOYS, Dad signed.
NO GIRL? Mom asked, slightly forlorn.
NO. SECOND TWIN SAME FIRST, BOY.
The nurse brought in her two newborn babies. At first glance, we could not have looked any more different to Mom. Nico had milk-pale skin and straw-colored hair; I had olive skin and deep brown hair. As we lay side by side on Momās chest, the visual contrast between my twin brother and me was so extreme that Mom had to nudge the nurse.
āThese are mine?ā she mouthed.
āYes,ā the nurse reassured her. āTheyāre yours.ā She pointed toward the hospital bracelets on our tiny wrists, and back toward Momās. The information on the bracelets matched up.
Of course my mom had known that fraternal twins could look different from each other, but she wasnāt expecting this. In almost every part of our physical appearance, we contrasted sharply. Nico was strawberry; I was chocolate.
With my dark hair and olive skin, I resembled my parents, older brother, and grandparents. It was a no-brainer that I was related to them. Nico, on the other hand, looked like nobody else in my family. If Nico hadnāt been born my twin, there would have been strong suspicion that he was the milkmanās baby. But heād shared the same womb as me, so there was no doubt about his lineage. And when you looked into our brilliant blue eyes you could begin to see our sibling resemblance. It was a trait we inherited from our dad and shared with our older brother.
Mom was exhausted and sweaty and still a little bit dizzy from the anesthetic, but she felt immense pride and joy holding her twins, one in each arm. Then a twinge of anxiety brushed at the edge of her consciousness: the doctorās test. It didnāt really matter to her what the results were. She would not forget how close she had come to losing one of her baby boys, so the most important partāthe fact that we were alive and healthyāwas accounted for.
But one way or the other, my mom wanted us to have the same test result. Differing results could set her boys on paths far apart from each other, and she didnāt want that.
The doctor removed the felt pad sensors from my little infant head and walked toward my mom, his hands clasped tightly behind his back. He took a deep breath and started moving his lips.
ā[Mumble] bilateral hearing [mumble mumble].ā
His hands rose to point at his ears.
ā[Mumble mumble] frequency [mumble mumble] failure.ā
Mom and Dad squinted at the doctorās lips to try to understand what he was saying.
With a lifetime of practice, Mom and Dad had become decent lip-readers. They had to be; back then, they didnāt have legally mandated access to ASL interpreters, so lip-reading was an indispensable tool in any Deaf personās communication survival kit. Itās still used often by Deaf people today. In fact, when I meet hearing people for the first time, one of the most common questions I often get is āCan you read lips?ā
Among the many options available to Deaf people when communicating with hearing peopleāASL interpreters, pen and paper, using the Notes app on a phoneāmany Deaf people will tell you that lip-reading is nowhere near number one on their list. Even with all the practice in the world, lip-reading is notoriously unreliable. By some estimates the average lip-reader captures only around 30 percent of the speakerās wordsāand the odds are even worse with additional distractions. For instance, chewing gumās a no-no. Missing teeth lead to missing words. And if the speaker has a bushy mustache? They might as well cover their lips; anything but a well-groomed mustache makes lip-reading near impossible.
The man who had delivered Nico and me was a great doctor, but he was a lip-readerās nightmare. His lips moved as if they were stitched up, like Frankensteinās monster. When he spoke, he looked like a ventriloquist speaking for his dummy. Without an ASL interpreter, my parents couldnāt understand him.
Grab a pen and paper, my parents motioned.
The doctor flipped over some papers on his clipboard and scratched out: Your babies have hearing loss.
Mom pointed at her babies and mouthed, āBoth of them?ā
The doctor hesitated before nodding and wrote: They both display some level of hearing loss.
āWhat do you mean?ā Mom mouthed, bristling at the ambiguity of the doctorās response. She wanted a straight answer and used her voice to get her point across: āAre they Deaf?ā
The doctor took a deep breath and fumbled with his words, trying to find the right thing to say to Mom and Dad.
The D word seemed to make him uncomfortable.
āWell . . . ,ā he started, then stopped and nodded. āYes.ā He pinched her thumb and forefinger. āA little bit, one more than the other . . .ā
Mom cut him off with her voice. āAre they both Deaf?ā
The doctor sputtered and finally gave them the answer: āYes.ā
Then he wound himself up to recite the speech he had prepared for these situations. The news of a failed hearing test often came as an emotional shock to parents. His first objective was to soften the blow. He would explain how the hearing test worked, introduce the possibility of a false result and how further tests might reveal that there was no hearing loss at all. And then, hedging a little bit, he would share about the technology available to help babies with hearing loss.
Bottom line, the doctor wanted to give parents hope.
The doctor began: āPlease donāt worryāā
He stopped, because Mom had jabbed a pair of thumbs up in his face.
āGood!ā she declared. The doctor then noticed Dad thrusting his fists into the air. He laughed and hugged and kissed Mom as if theyād just pulled the winning ticket to the lottery. The genetic lottery, that is.
Mom leaned over the bed to look at her two boys, moving carefully because she was still exhausted and dizzy and felt stitches tugging at her tummy. These radically different-looking twin boys were undeniably hers.
Nico and I had joined our older brother as the fourth generation to be born Deaf in our family.
The doctor frowned as he surveyed my mom and dad and brother cheering and signing to each other. His confusion at my familyās reaction was and is typical of the medical view on deafness. Doctors often think of deafness as a problem that needs to be corrected instead of a natural difference, one beautiful dot among many on the brilliant spectrum of human diversity, one that was also the crux of a culture, language, and communityāa way of life.
Most likely, the moment he confirmed Nico and I were deaf, solutions scrolled through his head: assistive listening devices like hearing aids; organizations and agencies that could provide Nico and I with speech therapy; and even surgical interventions, such as the implantation of sensors that detect sound and send electrical impulses to the braināalso known as cochlear implants.
Likely missing from the list of solutions scrolling through the doctorās head was American Sign Language, the native language of my familyāthe one my mother and father used to communicate in the hospital room, and the one that Nico and I would learn from birth and come to deeply appreciate and cherish as a cornerstone of our Deaf heritage.
My family barely noticed the doctor packing up and rolling the machine out of the room with a brief, confused nod.
I was less than a day old and had already taken my first test. According to the doctor, my ears did not work the way they were supposed to, and I had failed.
My family saw the test result differently. Dad was elated, because it meant that Nico and I would be able to experience firsthand the culture and language that shaped him as a Deaf person. My brother Neal, only eighteen months old, was too young to understand the test result and its significanceābut if he was a little older he would have been giddy at the news, because it meant his little twin brothers would be able to attend the same Deaf schools as him. Mom was just relieved that her boys were safe and healthy and that our test results would not set us on differing paths in life.
My grandparents came to the hospital to visit. After confirming our healthātheir first and foremost concernāMom ...
