Hearing Reimagined
A New Appreciation for Sound
Sarah Halpert’s Daughters - one hearing, and one with cochlear implants.
Sarah Halpert is a clinical psychologist in private practice with two young daughters, one of whom has a hearing loss. Sarah grew up profoundly deaf, wearing hearing aids and attending mainstream school. She opted for cochlear implant surgery when in her mid-thirties. She speaks poignantly about the challenges she faced growing up with hearing loss, technological advances, and the importance of self-advocacy.
The Vocabulary
We use a lot of terms to describe the inability to hear. We use the words “deaf,” “profoundly deaf,” “hearing impaired,” and “hard of hearing.” Which do you prefer and why? Or is there something else that you prefer?
I appreciate you confirming the terminology because it does have different meanings to different people. There is no right or wrong terminology, but it tends to be unique to the person. I typically say that I have a “hearing loss,” which is a pretty vague term, but that makes it a little bit easier to introduce. When I am having a more thoughtful conversation with somebody, I will say I have a “profound hearing loss.” I explain my history of being born with a profound hearing loss and having a genetic family history.
I associate the word deaf with capital “D” - Deaf community, which typically refers to people who use sign language. If I use the word “Deaf,” I may be conveying more of a membership with the signing community, which is not what I am, so I don’t tend to use that word.
Being the only deaf person at a school in a mainstream environment, I was encouraged to minimize my needs and to go along with everyone else to fit in. It was liberating and exciting to meet other people who had similar challenges and realize it is important to acknowledge those differences, speak up, and advocate for what you need in those settings.
I understand you and your mother are deaf, and your sister and your father are hearing. You did not attend school for the deaf as a child. You were mainstreamed and lived in the hearing world. What was it like growing up with hearing loss in a hearing world?
When you are a child, you don’t know anything different, so I don’t think it occurred to me to be unusual, challenging, or problematic in any way. It’s what I knew life to be like. It was also helpful to have a mother who had a hearing loss because that created a sense of similar shared experiences, although her hearing loss was very different because she does not wear hearing aids. You can already see the generational differences between my mother’s and my generation.
Growing up, my family was quite considerate. My father speaks so clearly and articulates so well, as the husband of a woman who has a hearing loss and father of a child with one, too. He was always easy to understand.
There were challenges. Large gatherings were always very hard, as were dinner table conversations or holiday gatherings when there would be a lot of conversations going on. I do remember that being very difficult and frustrating.
As a young child, Sarah was a poster child modeling with actor Lou Ferrigno (best known for starring in the CBS television show “The Incredible Hulk”) for those who have overcome their hearing and speech difficulties.
Sound Bytes at School
I went to a mainstream hearing school from the get-go, which was largely a very positive experience. I think that in an interesting way, it was not until middle school or high school that I came to appreciate more the hearing loss world— that other people in the world were deaf in the way that I was. There was a little bit of a “coming out” for me in middle school and high school when I met other peers my age who also had a hearing loss. For the first time, some of my experiences were validated as challenging - like going to the movies with friends and not following the movie or the challenges of large groups. Being the only deaf person at a school in a mainstream environment, I was encouraged to minimize my needs and to go along with everyone else to fit in. It was liberating and exciting to meet other people with similar challenges and realize it is important to acknowledge those differences, speak up, and advocate for what you need in those settings. I am very grateful for those friendships. It is interesting that until then, I had never met anyone else my age with hearing loss; my mother was the only person I knew with hearing loss.
Channels of Communication
I did not really have accommodations in school. I used an FM system, which amplified the teacher’s voice. In college, I had a court reporter, someone who would take down what was being said in the classroom. I probably used notetakers - classmates who volunteered notes in high school and college.
“I think it is so important for anybody to communicate in the most comfortable way for them. Above all else, it is just important to communicate.”
Technology Tectonics & Early Identification
You talked about generations before and how your mother was born deaf and is now a phenomenal lip reader. You were born with a hearing loss and got cochlear implants. You have a daughter who received cochlear implants almost immediately when she was born. Do you have anything to say about how your experiences have impacted your view as a mother to a child with hearing loss?
It is interesting when you look at the different generational development because each generation received the best available at that time. My mother had some technology, but it wasn’t super advanced then, so her parents sent her to a boarding school for the deaf in New York City when she was three years old. She spent weekends at home in Washington, DC, but returned to New York City every Sunday night as a three-year-old. It was amazing when you think about it, but that was so she could have the greatest benefit of spoken language at that time. She did that for ten years, and as a result, she is an amazing lip reader and has been fully maintained in the hearing world – of course, not without frustrations.
I benefited from an earlier diagnosis. My parents knew there was a possibility, and there was no screening at the hospital. The doctor told them that I was fine, but they sensed that I was not, so that speaks to how doctors don’t know everything. I was diagnosed at a couple of months old and then fitted for hearing aids at about six months old. I benefited from early intervention and a whole lot of speech therapy. My mother would drive me to the Children’s Hospital in Washington, DC, every day for speech lessons, and I had to work hard. I got my cochlear implants in my early thirties when they had been around long enough. It was a clear benefit. I was doing well with my hearing aids, so I didn’t have to be at the front line getting that technology, but when I did, I could see the benefits. The cochlear implants were a major step up from hearing aids.
After my daughter was born, the hospital started implementing a mandatory newborn hearing screen so everyone, regardless of family history, would be screened for hearing loss. My older daughter passed that test by my younger daughter did not, so that was a super early indication of hearing loss. We had to follow up with a lot of testing because with babies, failing that test could be due to fluid or something else, but it wasn’t. Early screening is so crucial to identify hearing loss early on because my daughter was able to get hearing aids at six weeks old. I knew because of my experience that if her hearing loss were profound enough, she would qualify for cochlear implants, and I wanted to get her access to sound as soon as possible. I wanted to do it in both ears at once and not wait to repeat the surgery. There was no part of me that felt like I wanted to wait to see if it would work and then do the other, so that is what I did at the time. If she ever has children and if they ever have hearing loss, it will be exciting to see what technology looks like at the time.
I wanted to get her access to sound as soon as possible...
There was no part of me that felt like I wanted to wait....
My implants were seven years apart, and the idea at the time was to make sure you responded and make sure no new technology was going to come out and then do the other one. However, I knew at that early age she would benefit from everything. My daughter got cochlear implants at seven months old. Her ability to mainstream was even more seamless than mine.
Sarah’s daughter post-cochlear implant surgery in both ears.
Equipment for Sarah’s daughter with double cochlear implants.
My daughter went to a school where every classroom had a few kids with hearing loss, but most were hearing. The whole school is designed for children with hearing loss. They have an amplification system, complete visibility, and a rich vocabulary curriculum because deaf people need repetition of the word before it gets ingrained in their collection of words. It was a semi-mainstream program, but she had the benefit from day one of having peers with hearing loss.
“It is incredible to have that experience of being mainstreamed but not feeling alone in whatever challenges she faced. ”
For part two of the interview, see here. More resources and information about Hearing Impairment and Deafness, and Cochlear Implants are on the Inspiration page.