By Sarah Williamson | firstname.lastname@example.org
Helen Keller, the American author and activist who became deaf and blind at 18-months-old, said, “Blindness separates us from things, but deafness separates us from people.”
I have witnessed this separation first hand in each woman that has led to my existence.
Sensorineural hearing loss has traveled hereditarily in my family for three generations.
Marcia Dion, Au.D., my family’s audiologist at Vermont Audiology, describes this type of loss as involving the inner part of the ear.
“The damage is nerve related. Basically, within the cochlea there are hair cells that transmit information to the brain. In those with sensorineural loss, the hair cells are damaged and cannot send information properly,” Dion said.
This story begins with my great-grandmother, Agnes Peters, born in Winooski, Vt., who bore 16 children, nine of which developed a hearing loss early in life. She had a loud presence, regardless of her loss. I remember her sunk deeply into a brown ottoman, white hair sprung in all directions. Family always surrounded her—always yelling. She could not hear a darn thing by the time she passed away at 94-years-old.
“Agnes was a physically and emotionally strong woman and she made sure that her voice was heard within her enormous family. She remembered names and events so clearly. Her children really accommodated her profound hearing loss,” my mother, Marlene Williamson, said.
My grandmother, Shirley Bergeron, lost her hearing in her 30s. She remembers first noticing her loss when she could no longer hear the daily chatter of neighbors while they hung clothes to dry outside.
My grandmother’s education ended in eighth grade when she dropped out of middle school to care for her 15 siblings. She has never worked outside of the home or driven a car.
My grandmother’s life has been far from easy and I commend her for adjusting so well. Her loss seems insignificant compared to her childhood, which still brings tears to her eyes.
At 17-years-old, Shirley left home and married my grandfather, Armand Bergeron, a year later. My grandparents have been together for 61 years and Armand became Shirley’s interpreter after their children left home.
“She cannot do adult activities on her own. For years it’s been that way, shopping, the doctors. She leans on me all the time but I am happy to walk to the counter with her stockings or whatever she wants. If I wasn’t here, I don’t know how she would be on her own,” Armand said.
“We were all her ears,” my mother Marlene added, who is one of five children.
Even without hearing, my grandmother is the storyteller of our family. She remembers everything.
“We learned to engage my mom by asking her tons of questions. We loved her stories and learned so much about our history. My dad helps with the menial activities but mom shares the stories of our lives. She is the one with the heart and hearing loss has not taken that away from her,” Marlene said.
My mother noticed her loss when she was 37, while in graduate school at Johnson State College in Vermont. She frustratingly could not hear the students behind her and knew she needed hearing aids.
In contrast to Shirley, Marlene is a career woman. She has been a social worker for 26 years and has done exceptionally well working with clients, especially in one-on-one settings.
I remember my mother’s loss progressing in middle school. She could no longer hear me from another room. She could not hear my friends when they said hello. I remember wishing my mom knew the songs on the radio but she could not understand the lyrics without having them in front of her.
As a child, I feared my mother would not hear me crying out at night. What if I was abducted? I was always thankful we had our guard dog Phoebe.
Marlene has become an advocate for herself. She tries the newest technologies, finds the quietest places in restaurants and her first words to those she has just met are, “I have a hearing loss, please speak up.”
When I was a child, my mother embarrassed me. Hearing loss was something I did not want to accept—hers or my own.
I was told I have a hearing loss in kindergarten at Berlin Elementary School in Berlin, Vt., following a public school screening. To this day, we are unsure why my loss showed up significantly earlier than in the other women in my family.
Jonnie Wells, Au.D., director of speech and audiology at the Florida School for the Deaf and the Blind in St. Augustine, Fla., said there are no rules in genetics and that sensorineural hearing loss can skip multiple generations.
After the kindergarten screening, I was referred to a doctor. My mom will never forget what he told her.
“I can picture him but I can’t remember his name. I told him I needed to know what the normal range is and where you differed. I needed numbers. I kept thinking it’s kindergarten, for God sakes, why don’t we wait the year out? And then he replied, I’ll never forget, ‘do you really want to be the person to get in the way of her hearing the birds sing?’” my mother said.
She remembers tears welling in her eyes. When you have sensorineural hearing loss, you spend your whole life not wanting to become your mother. Then, once you are a mother yourself, you spend the rest of your life hoping your child will not become you.
What the doctor said was unfair. I could hear the birds sing—this my mother knew. She had been on a constant lookout for signs of hearing loss. My teachers said I had no difficulty hearing. I was extremely social.
“I remember agreeing with him and feeling guilty, so we got the hearing aids,” my mother said.
They were green and sparkly. I wore them for one year—then gave them up for over a decade. I was not ready to be the girl with the hearing aids.
According to the Hearing Health Foundation of America, three out of every 1,000 children are born deaf or hard-of-hearing in the United States.
I have not accepted myself as part of this statistic for the majority of my life. I somehow found adjustment easier than acceptance. This may be hard for those in the hearing world to understand. Why would you not want to hear? Socially, I could not come to terms with my disability and unlike deafness, there are ways to cover it up.
I look back now and wonder how much I have missed.
When I was younger, it was the little things. I did not hear the soft chatter of girls at sleepovers. I could not hear the television if it was on late at night, the volume low. I understood words differently. I often pronounced lyrics in songs on the radio incorrectly or misheard people’s names. As a child, most of my peers spoke loudly and I do not recall my loss being that significant. Then, in high school, it became hard to hear my best friends. They would laugh at me saying, “Oh, Sarah just didn’t hear you.” In a tone of confusion, but also irritation, they would say, “Are you even listening?”
While my loss was becoming more noticeable, my mother’s was taking a turn for the worse. Ironically, I treated her loss much like my friends treated mine. I was frustrated that she could not hear me in certain contexts or that she would not acknowledge people when they said “hi” to her.
Within this frustration was fear for my future and fear for becoming the woman I look up to most.
Sensorineural loss separates us from people in unrecognizable ways, which is why it is often referred to as a hidden disability.
Elisabeth Kaldor, a 27-year-old vocational rehab counselor from Cabot, Vt., also suffers from hereditary loss. Her loss was recognized in kindergarten but in contrast to me, she has worn hearing aids the majority of her life.
“There is a deaf community. It’s a community of people that can come together and bond and celebrate, but with this hearing loss there isn’t anything like that for us because it’s not bad enough. We’re not part of the deaf world but we’re not really part of the hearing world, either, we’re kind of stuck in the middle,” Kaldor said.
Most of the time, the hearing world has no idea. People assume we can hear when we cannot.
Every day we are actors. I have witnessed this in my grandmother as she shakes her head in response, not understanding the conversation in front of her. I see my mother respond to a question with a big smile, having no clue what was asked.
“Often, there’s a joke and most of the time you laugh because you see people’s expressions. But if they say something you are supposed to respond to, you can’t. It’s like that for my mother and for me,” Kaldor said.
I miss punch lines. I will watch a whole movie on television and not know what is going on to avoid turning the volume too loud. I have the same smile my mother does when I do not hear a conversation in a group. I sit silently, trying to pick up clues. Sometimes, I give up. I am very social and miserable when I can’t hear.
“I remember talking to a friend of mine and saying I don’t want to stand around and talk to people anymore. I thought I was anti-social but I see now it’s because I couldn’t hear anything. It makes me sad sometimes, it makes me wonder how much I don’t hear because I’ve adapted to it so much,” Kaldor said.
Elisabeth’s mother, Ruth Kaldor, received a cochlea implant in May 2012.
“It really affects your self esteem. You avoid social situations because it’s such an effort. I have four brothers and sisters and I always felt like I was the biggest loser out of all of them,” Ruth said.
Kaldor admires her mother, who has advocated for herself and been an art teacher for almost 30 years.
While the hearing world is clueless about Kaldor’s and my anxiety to hear, we are clueless about the deaf world isolation.
My mother once told me she appreciates the silence at the end of the day. When she removes her hearing aids, the world goes quiet. No more anxiety, acting, lip-reading, asking people to speak up, background noise or interpreting body language—just quiet. This is something a hearing person can never understand.
Kaldor and I turn to our mothers for support.
After living without hearing aids for 12 years, I finally set up an appointment with my audiologist my senior year of high school. I was tired of missing out.
I was moving to Florida, 2,000 miles away for college, and had decided it was time to start anew as someone with a hearing loss.
But that has not really happened. I wear my hearing aids daily, but I hide them underneath my long hair. I have slowly told the people I care about but still find myself acting as well.
I rarely ask people to speak up. I do not ask people to turn on closed-captioning. I have not told my employers I have a hearing loss. I spend every waking hour worried about something I cannot change.
Having hearing aids is not black and white. I do not hear normally while wearing them. Everything is amplified and noisy environments are extremely challenging.
Why do I prevent everyone from accommodating my disability?
My mother always tells me, with sincere optimism, that my hearing loss will not hinder my career path—photojournalism—but I am constantly worried about how my loss will hold me back. As a journalist, you need to hear. As a photographer, you need to interact.
My mother trusts technology.
“Blind people are going to be seeing and deaf people are going to be hearing in the next 10 years. If nothing else, we are going to have amazing technology and it’s going to make life more adaptable,” she said.
Aside from advances in hearing aids, or amplification technology, stem cell research is also beginning in the United States. Dr. Samer Fakhri, an otolaryngologist at Memorial Herman Texas Medical Center, is currently researching the first FDA-approved way of treating hearing loss in children using their own stem cells. Such cells could potentially repair the damaged cells in the cochlea and restore hearing, according to Fakhri.
I wonder, at 21-years-old, will my possible future daughter have this loss? Will I find a man like my grandfather, with enough patience to be my interpreter? Will my loss be cured?
Most importantly, when will I start advocating for myself, not only to improve my own life, but the lives of others with this hidden disability?
I suppose, 2,170 words later, my advocacy starts here.
“I have a hearing loss, please speak up.”
Mom, Shirley and Agnes, I know I have inherited your strength as well. And for that, I am grateful.