Hearing Reimagined (Part II)
Sarah Halpert’s daughter with cochlear implant.
“A person needs to communicate in the way that is most comfortable for them. Above all else, it is just important to communicate! I think that it is wonderful there are multiple ways of communicating.”
Access to Spoken Language
Many members of the deaf, hearing loss, and hard of hearing community live in a world where they use sign language exclusively. How do you view the debate between sign language and reading lips?
I have no strong feelings about the sign language versus lip reading debate. I do not think the communities are as polarizing as one would think; that’s been my experience. There are a lot of deaf people who use spoken language and who sign and vice versa. In my experience, it is not so clean-cut. I feel strongly that when a child is born, it is vital to set them up with the most challenging skill to learn: using spoken language. You need to give them the best opportunity to have access to sound - whether with hearing aids or cochlear implants. You can always learn to sign later on, but it is tough once you miss that intervention window to access sound. That is where I have my intense feelings.
The Generational Leap: Tectonics of Technology
Your mother was born deaf, did not wear hearing aids, 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. How have your experiences have impacted your view as being a mother to a child with hearing loss?
1970s Hearing Aid
Hearing aids went from huge, box-like and chunky devices, to “behind-the-ears” and then smaller and thinner. Here’s a picture of a hearing aid in the 1970s. These were the first “behind the ears”. Sarah’s mother says, “They were wide and heavy and didn’t do well staying in place. I hated them!”
It is interesting when you look at the generational shift in technology because each generation received the best available at the time. My mother, who was born in the late 1940s 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.
Hearing Aids have evolved over time.
Sarah’s mother, born in the late 1940s, learned to speak using a hearing-aid device similar to this one.
My mother commuted to a school for the deaf in New York City from Washington, DC for ten years, and as a result, she is a fantastic lip reader and has been fully mainstreamed in the hearing world – of course, not without frustrations. Mouths are not all the same and it can be hard to lip-read certain mouths!
Early Diagnosis & Intervention
I benefited from an earlier diagnosis. My parents knew there was a possibility of hearing loss, 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.
Sarah’s hearing husband modeling how the cochlear implant is worn.
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, but 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 crucial to identify hearing loss because my daughter got 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. No part of me 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.
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. She 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, full 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 amazing to have that experience of being mainstreamed but not feeling alone in whatever challenges she faced.
The Pivot Point — Learning to Advocate
A turning point for me was learning to better advocate for myself. It was hard because, being so mainstreamed for so long, my job was to blend in even if I didn’t understand everything – that I should pretend I did and did not want to make waves. As a younger person, I was not old enough to challenge that, or think anything of that. I remember speaking up more about what I needed in high school and college, even if it was something simple like a seating arrangement at a table or watching a captioned movie. In college, there was one point in which my accommodations were threatened, and the school took away the court reporter accommodation [somebody who would take down what was said in the classroom]. That was a big turning point in arguing for myself and advocating that I needed that for my classes. That started a new chapter for me in being more comfortable with my own hearing loss and recognizing the necessity of speaking up.
The court reporting was threatened in college. It was the real-time reporting in the classroom, which honestly was not the ideal accommodation because it’s hard to read an entire lecture. Many words would be misspelled, and as a neuroscience major, having to read and learn about different brain parts made learning difficult, especially when words like “neurotransmitter” were misspelled. It was better than nothing. That was expensive, and the school argued that it was too costly and that there were other approaches. It required a new level of advocacy for me.
You have a daughter who goes to school, speaks beautifully, hears – the whole deal. What kinds of accommodations are in place for her regarding cochlear implants? Do you notice any big differences between her experience and when you were in school?
I had my cochlear implants for graduate school. For my daughter, her school, as I mentioned, has a special model to integrate kids with hearing loss into the mainstream classroom. Each classroom has a sound field, and the teachers wear microphones. Their voices are amplified for the whole classroom, which benefits everybody. That, plus small classes, is the only accommodation. The school is against the FM system because they feel like it is not a realistic accommodation. They don’t want students depending on the FM system because they would miss out on group conversations. The FM system amplifies whoever is wearing it. That was the extent of my daughter’s accommodations at that school.
My daughter started a new school this year, and I have been working closely with the school to get her to wear the FM system because it amplifies sound and creates a group-like setting where you can hear all the people at a table. I’m still sorting it out. She does not want to use it at school, and I’m not sure if that’s because she is so used to not using it in the classroom, or if she doesn’t need it, or she may be feeling uncomfortable because she has left her special bubble of a school where a lot of kids have hearing loss and cochlear implants. I have been talking with the school and working with them to implement a sound system in busier classrooms. There’s only so much they can do.
“Differences truly shine a unique light on a situation. That is something to be embraced. Something to lean into.”
You are a very accomplished person who grew up with this hearing loss. You've thrived. You went to school. You're now a psychologist; you have a family. You're a powerful example. Is there anything you would like to leave my readers with?
I have come to appreciate – the world has come to appreciate — and communities have come to appreciate more and more – that people exist in different ways: how they think, learn, and how their bodies move. There's a greater appreciation for that because differences truly shine a unique light on a situation. That is something to be embraced. Something to lean into, to not be embarrassed by that or feel like you can't speak up about it. It's hopeful and a gift to speak up about it when appropriate and bring that voice to the table in any setting. I’ve always found that people appreciate when I have spoken out about or shared my experiences. It makes them think about something a little bit differently.
My blog is entitled “The Shoes We Wear.” What shoes are you wearing?
Blue On Cloud Sneakers. They are very comfortable.
More resources and information about Hearing Impairment and Deafness, and Cochlear Implants on the Inspiration page.