Their Experiences Growing Up Deaf with Usher 1F 20 Years Apart
At Usher 1F Collaborative, we have families with affected children who are babies all the way through adults with Usher 1F who are in their 80s. Our mission and our focus is on finding a cure for the vision loss of Usher 1F, but those with Usher 1F are also born profoundly deaf. With the advent of cochlear implants (CIs), which were FDA-approved for children in June 1990, childhood experiences growing up deaf changed. Now, 32 years later, some in our Usher 1F community are adults who were among the first children to receive CIs.
A long history exists of friction between the Deaf Culture and those in the oral deaf community. At Usher 1F Collaborative, it is important that we transcend these differences and all work together toward our common goal of a cure. Communication and understanding are key to realizing this goal.
Jaime Recht has Usher 1F. She is 56-years-old so grew up well before the advent of cochlear implants. Rachel Chaikof is 35 and, as a participant in the FDA clinical trial for the first multichannel cochlear implant, was one of the first 200 children in the U.S. to receive a CI. Recently, Rachel and Jaime had the opportunity to spend an evening celebrating Passover together in Boston. An understanding began to grow from this that we would like to share with others.
Both answered the same set of questions that focused on their acquisition of language and growing up deaf at very different times in terms of available technology.
1. Describe how you gained access to language as a child. How much were your parents involved, and can you give some specific examples?
Jaime: I first went to Lexington School for the Deaf from 1967 through 1974 from age 2 to 9 in Manhattan. The school used a strictly oral method. Children would secretly sign to each other during break times and play time outside the classroom. I once showed my parents some of the signs I picked up from other kids, but my parents immediately stopped me and firmly told me not to do that again. The school also provided me some intense one-on-one speech therapy with audiological equipment. Despite all that, I refused to learn how to lipread, speak, read, and write.
My parents finally gave in as I got older and decided to hire a tutor to teach all of us,including my younger deaf sister, sign language in order to prepare for my transfer to St. Francis de Sales School for the Deaf in Brooklyn. This school used the Total Communication method (signing and speaking simultaneously). I was finally exposed to sign language in the classroom setting in third grade. I remember being shown a picture of a bus in a picture book and then being shown a sign “bus.” I made the connection between these two. After that, I immediately learned many more words, and then from there I finally got to learn how to speak a little.
I would say my own stubbornness is what ended up showing my parents that I was a visual learner. I had worn hearing aids since I was a baby up until I was about 17 or 18. They simply did not do anything for me. It was just all sounds to me, nothing I could identify or recognize.
At home we all used "sim-com", speaking and signing at the same time in Signed English as opposed to American Sign Language (ASL) even after I learned ASL. At least we were able to communicate with each other.
Rachel: During the first two years of my life when I had no access to advanced hearing technology, I relied on lipreading, which my parents and Auditory-Verbal therapist taught me, and I also happen to have the natural ability to learn. However, I was able to learn only about 100 words. I then received a cochlear implant as part of a clinical trial at New York University in 1989 when I was two-years-old. I went from having very little access to language to having full access to complex language through listening with my cochlear implant. From age two to ten, my parents took me to Auditory-Verbal therapy weekly to learn how to rewire my brain to understand language through listening with my cochlear implant, and then my mom provided me therapy for one hour daily. Auditory-Verbal therapy involved playing with toys and communicating with listening and spoken language to learn not only words but also grammar. As the Auditory-Verbal Approach not only involves therapy but also bathing a deaf child in as much language as possible, my mom integrated the Auditory-Verbal Approach into everyday life by teaching me vocabulary while cooking, shopping, cleaning our home, playing games and going to parks. Through Auditory-Verbal therapy, I was able to learn to have conversations with ease on the phone and understand the television without the use of closed captioning.
2. What type of school did you attend, mainstream or self-contained school for children who were deaf? How was this experience for you?
Jaime: It was all schools for the deaf for me including a university for the deaf, Gallaudet University. The best educational environment for me was being in a school with other deaf students using ASL. I was involved in a lot of activities as soon as I entered St. Francis, continued to Lexington and Gallaudet and beyond. I even got a role in a school play, I also got on honor rolls, etc. This was where I first saw how capable I am. I built up a lot of self-esteem and self-confidence, especially when I realized I was not as inferior as I thought and that there was nothing wrong with me. This is the proof that sign language and visual learning worked best for me. I can tell you I was happy as soon as I entered St Francis.
Rachel: I attended mainstream schools all my life and learned alongside my hearing peers. My teachers and other students used assistive listening devices to ensure that I had equal access to hearing instructions and discussions. Moreover, I had phenomenal teachers of the deaf who not only worked with me to ensure that I had reasonable accommodations in the classroom but also worked one-on-one with me on my language skills to close my language gap since I was two before I received full access to language. I learned a second spoken language, participated in extracurricular activities, including holding leadership positions, achieved stellar grades and graduated with honors from middle school and high school.
3. How easy was it for you to make friends at school? Were you able to communicate with your friends easily?
Jaime: Since I always went to school with deaf kids, it was never a problem communicating with them. Even at the oral school, we still often communicated with each other in signs during breaks and I also had play dates outside the school.
National Association of the Deaf has a great youth program called Jr. NAD, which provided various activities including their famous Youth Leadership Camp (YLC). When I was in 8th grade, one deaf parent of a deaf student observed me and encouraged my mom that I join Jr. NAD where her oldest son was president. My mother and I went to an orientation meeting to learn about the program. I then started hanging around with other Jr. NAD kids, and it was the first time I started meeting other deaf kids outside St. Francis. I went on ski trips and other events with them. That was also where I learned ASL (as opposed to Signed English) before I even entered Lexington again in the fall of 1980, which had finally allowed sign language in their high school just a year before. At Lexington, I was involved in a lot of school activities, some in leadership positions. Some of the kids were also from the Jr. NAD group, so I already had the in. I was so grateful for the networking and experience Jr. NAD provided me.
Rachel: During most of my schooling years, I was able to make friends easily and enjoy a social life by not only getting together in our homes but also at movies and restaurants, although I did face some bullying because of my disabilities during my later elementary school years. Those difficult years taught me to stand up against discrimination and advocate for myself as a person with disabilities.
4. Did you ever feel frustrated because of your deafness or have difficulty communicating as a child?
Jaime: Yes, up until I was 9, my childhood was a very difficult and frustrating time for me, especially at Lexington School during my first time around. Starting at St. Francis and thereafter, I didn’t have much problem communicating with kids, teachers, and staff. My deafness was not a barrier in these signing environments. I was finally in a better place mentally and emotionally.
Rachel: Before I received a cochlear implant, I faced challenges with communication due to my limited access to language through lip reading. I loved going “bye bye.” I was very determined from the start, and two photos of me at age three show me holding onto the doorknob with an angry look on my face, climbing the door to try to open it. I didn’t understand why we couldn’t go out. About six months later, I had a similar situation, but my language had advanced enough that my mom was able to explain to me that first we had to do something else, and then we could go bye bye. I understood and kept repeating it.
5. What do you want parents today who are raising children who are deaf to know about and learn from your experiences?
Jaime: Parents need to remember the importance of an early language acquisition from the start, which is where ASL comes in. I am proud and happy that my parents let me grow and thrive since I was nine. Because of the way I was (and still am), I was constantly very motivated and involved, especially when the barriers were broken down for me. I graduated as salutatorian in my high school class and from Gallaudet University with a business degree. I’m currently a program analyst with the Federal Government. I’m a strong, independent woman with two adult sons. Parents need to know that deafness doesn’t mean our futures are doomed to be miserable.
I also want parents of deaf children to learn as much as they can about deafness and deaf culture, whether their children have a cochlear implant or not. One cannot just get their kids implanted and automatically expect them grow up just like them or hearing kids. They are all different so the parents need to learn as much as they can to be able to afford kids any opportunities available to them. ASL and my involvement in the deaf community were the best things for me mentally and emotionally since these are what gave me the education and confidence I needed in life.
Rachel: The first most important lesson from my experience is that parents must ensure that their deaf children have access to full language as soon as possible as it makes all the difference in the outcome of a deaf child’s life. The second lesson is that parents should not underestimate the abilities of their deaf children. They should know that the sky is the limit, and deaf children can grow up to do anything they wish to do in life.
6. If you had a chance to change how you were given access to language as a child, what would you change, if anything?
Jaime: It would be ideal if I was exposed to ASL as an infant, which is why I strongly support early intervention because late language acquisition is a huge issue with deaf children of hearing parents who don’t sign from the start. Written good English is still difficult for me as I acquired it rather late in my life. I know if cochlear implant technology was available when I was a baby, my parents would be one of the first to get me one. Nevertheless, I’m a proud deaf person who doesn’t want to change anything regarding my own deafness.
Rachel: I would get bilateral cochlear implants no later than six months old, which would have decreased my time in therapy dramatically and enabled me to learn language more easily through listening in a variety of different situations. Today, combined with newer cochlear implant technologies and hearing with two cochlear implants (I received my second cochlear implant in my other ear when I was 17-years-old), my access to listening and spoken language has vastly improved and become even easier. I’m able to have conversations with ease in noisy environments, overhear people’s conversations, including when I’m in a different room from where the conversation is happening, and understand the radio in the car and announcements at airports and on planes.
7. How do you think it is different for babies born deaf today compared to your childhood?
Jaime: Yes, it’s so different today for deaf people. We now have access to closed captioned TVs, captioned movies, video relay service, smartphones with FaceTime, speech-to-text app, online ordering, etc. We are not as isolated and out of touch with mainstream hearing culture. And at the same time, we are more in touch with deaf people from all over the country and even the world thanks to social media. Also, most deaf schools dropped oral education philosophy because it simply and clearly doesn’t work. Yes, there are a lot less communication, language, and cultural barriers now.
Rachel: Today, when deaf children receive cochlear implants in both ears at six months, they complete therapy by three-years-old and go on with life thriving with advanced listening and spoken language skills. The first three years of a child’s life are the most critical for access to full complex language as this determines the outcome of a child’s life. It is extremely important for a child born deaf today to receive bilateral cochlear implants as soon as possible, preferably by six months so that they can have immediate access to full language. The sooner the child hears language, the sooner the child finishes therapy and is able to access language with ease. Because I didn’t have access to full language until two-years-old and, moreover, I grew up hearing with only one cochlear implant, I didn’t complete therapy until I was ten-years-old.
The common theme in both Jaime’s and Rachel’s experiences and thoughts is the importance of early acquisition of language. The first few years of life are the critical early language learning years and are also the years spent mainly with parents and primary caregivers. Regardless of approach, parents must be fully committed to imparting sophisticated language to their children. Cochlear implants have made it much easier for children born deaf today to successfully learn to listen and talk, but the ability to comprehend spoken language through hearing with their implants does not magically happen. While early implants have made it a much easier process, parents and caregivers need to invest the necessary time and effort. Similarly, if parents opt for ASL as their child’s primary language, they must make the necessary effort to become fluent themselves in order to impart sophisticated language to their child.
Regardless of primary language, Jaime and Rachel have shown us that those with Usher 1F have experiences and priorities in common and can work together to find a cure for their vision.