Faces Behind the Screen: Donna Sorkin
Donna grew up with nearly normal hearing, but over the years, her hearing began to decline.
Receiving her cochlear implant at the age of 39, for her, it was an “extraordinary life-changing experience.” From then on, she dedicated her life to helping other individuals discover the power of hearing technology including hearing aids, assistive devices and cochlear implants.
Today she is the Executive Director of the American Cochlear Implant Alliance, helping to expand awareness and access to cochlear implants.
To start, tell us about your hearing history.
I was born with nearly normal hearing. When my hearing was tested in elementary school, the screen would pick up a high-frequency hearing loss. In those days, school testing included more sensitive testing than what is done today, so my hearing loss was picked up.
At that time, if a child had mild to moderate hearing loss and seemed to be doing ok in class, there was no further follow-up.
There was hearing loss in my family, my dad wore hearing aids and his mother was deaf.
Hearing aids then were not very sensitive and my father did not benefit much from his hearing technology, which he wore most of his adult life. My grandmother’s hearing loss was likely too profound to be helped much by hearing aids and, she was quite isolated. It was difficult to communicate with her and I remember that people ignored her.
My hearing started to change while I was in college. I would naturally sit in the front of a lecture hall. I didn’t think about what I was doing. But looking back, that’s how I was compensating.
I went to graduate school and entered the workforce. When I was in my late 20s my hearing started to change more rapidly.
I would do public speaking, and I would walk around the audience and people thought I was being very interactive but I was actually getting close enough to hear and see them.
While I was pregnant with my son, I developed tinnitus, a ringing in the ears. It is thought that the changes in blood levels (typical of those in pregnancy) can set off tinnitus. Or it could have been the progression of hearing loss. Tinnitus can be very overwhelming for people. It was for me at first, until I learned to deal with it.
My hearing stayed stable, for a period of time and I wore hearing aids and also used an FM system, which helped me a great deal. This time frame was before we had digital amplification, which has greatly improved hearing aid technology and the ability to provide people with sensitive sound adjustments.
More time elapsed and my hearing loss worsened. Hearing aids provided little benefit. I learned about cochlear implants and the benefit that I might derive from them. I was evaluated and approved for the surgery, which I had in 1992.
What was it like getting a cochlear implant?
It was life-changing. I had grown up, been educated and worked in the hearing world. My friends and family were all hearing. I didn’t know anyone that knew sign language. My life and work were in the hearing world.
When my hearing changed so dramatically, I wondered how I would be able to continue working. The thought of changing my life so dramatically, learning sign language and asking my family and friends to communicate differently was very frightening. I couldn’t see a path forward with how I would function in my personal life and my work life. For me, getting a cochlear implant gave me my life back.
While cochlear implants don’t provide “normal” hearing, the device allowed me to regain considerable hearing, including being able to use a voice telephone again. Though a cochlear implant does not provide “normal” hearing, it was so much different from where I had been for the prior five years. I hadn’t been able to use a voice telephone, as we’re right now doing, for a very long time. My hearing declined before the passage of Americans with Disabilities Act, legislation which provided opportunities for people with hearing loss to have access to professionally run relay services.
This was also before the Internet, which provided all of us, deaf and hearing people alike, with email. If you were deaf, as I was, you were cut off. At the time, I had a consulting business. I was starting to lose clients because people couldn’t talk to me on the phone. And of course, there was no email.
So how did you talk to somebody?
What helped you the most during those hard times?
I was fortunate in that I had extraordinary family support from my wonderful husband and son. My son was always helpful and very sweet about it. He would translate his little friends’ voices for me, repeating what they said in a loud, clear manner.
Though I had wonderful family support, it was nonetheless a very frightening time. Though I hesitate to use the word “miracle,” the outcomes for me were just that — a miracle.
You talked a bit about your grandma, how she felt isolated back in the day. Have you ever felt that sort of isolation or discrimination from being deaf or hard of hearing?
I would say not. I grew up at a very different time. I think there’s been such a huge change in both the technology and in terms of our responsibility as a society in addressing people’s needs regardless of how they communicate. If I had chosen to remain deaf and use sign language, we, as a society, take responsibility to provide communication access for whatever a person needs to be included. Hopefully, that will still always be the case.
While not perfect, that change has really only happened since the passage of the ADA and other laws such as the Telecommunications Act, that address accommodations for people with disabilities.
I think we’re fortunate in that the technology is so much better and our view of what is expected of us, in terms of including everyone if we can, very different now.
When did you decide to change your career path from what you were doing to pursuing work in cochlear implants and for the deaf and hard-of-hearing community?
The first job I had in this field was not in cochlear implantation. It was with a national organization for adults with hearing loss. I chose to contribute because I felt we had not been proactive enough about involving people with hearing loss in pursuing needed change.
I honestly didn’t think that I would stay long term. I am trained in public policy and particularly in urban planning. I thought I could contribute but I also thought I would go back to what I had been doing before. I hoped that I could contribute to the organization that had helped so many people.
I can’t say that when I took that job that I thought that I was transitioning forever. It’s interesting what happens to you when you become involved in deafness and hearing loss.
You realize how impactful, technology and appropriate accommodations can be on a person’s life. You realize how much you can help people and improve their lives. Many of us who work in this field tend to stay in this field.
In my case, after I had been involved in consumer advocacy for a few years and benefited from it myself and met so many extraordinary people, I didn’t even think about going back. It was an extraordinary experience.
What’s the mission of the American Cochlear Implant Alliance?
We have “alliance” in our name. That says a lot about who we are because we work with other organizations. We’re relatively small, and will never be a large organization in terms of having ten thousand or more members. But we work with the larger organizations in this field such as those for ENT surgeons, audiologists, speech pathologists, and educators. We also collaborate with organizations for people with hearing loss including those who work with parents and adults.
We focus on cochlear implants and, specifically, on access to cochlear implants. We do that by addressing issues that impede access through research, awareness, and advocacy. You can read about our activities at www.acialliance.org.
Could you describe how music and voices sound with a cochlear implant?
People often ask me that. They work very well – you have your own voice. I’ve talked to you on the phone now for about an hour. Likely, if you called me again, I would recognize your voice. If participating in a meeting—either in person or on a teleconference, with, maybe 8 to 10 people who I know, and someone speaks, I will generally know who has spoken from their voice. Not everyone has the same outcomes, but for me, that is what is typical.
Do cochlear implants provide someone with the same clarity of sound that you have? No, they do not. If you were to ask me exactly how it differs, I really can’t tell you because it’s been so long. What happens with a cochlear implant is that, over time, your brain learns to process the sound that it’s getting. You become more adept at filling in the gaps. There is a saying that “You hear with your brain. Your ears are just the way in.” That, in fact, describes the process of hearing.
You may have heard people describe the first experience that they had listening to sound with their newly activated cochlear implant. It is not uncommon for someone to describe the sound as robotic, or like Mickey Mouse. That’s because it’s a different signal than the brain is accustomed to getting, and it takes time for the brain to learn that sound. Over time, it does learn, and you do get better at using the sound.
When I first received my cochlear implant, I made comparisons between what I was hearing and what I remembered sound to be before my hearing declined. At some point, I said to myself, stop doing that. It’s not helpful. You learn to use sound you have. It becomes your sound.
It’s similar with music. Certainly, music is not the same. But if I listen to a song that I knew before, the music is recognizable. Like when I was in college, I loved James Taylor Taylor — I probably listened to Fire and Rain 200 times. If it’s a song that I knew before like, “Fire and Rain,” even though I’m sure it doesn’t sound the same like it did before my hearing declined, my brain fills in the gaps. When “Fire and Rain” comes on, I know it’s “Fire and Rain.” And it sounds wonderful to me.
For adults who have the memory of sound, it’s not helpful to make comparisons to the way you perceived sound before. It will sound different. What you hear with your cochlear becomes your sound, and it’s really quite wonderful once you learn to use it.
What’s one piece of advice you would give to people who are deaf or hard of hearing?
For this technology or for hearing aid technology, I always tell people, don’t wait. Too often people wait to pursue hearing technology. The average time that an adult takes, from the time frame when they could benefit from a hearing aid until when they actually are fit with the technology is seven years. I’m talking about adults, not children. The wait time for the cochlear implant is even longer.
What I often hear from people to justify waiting for a cochlear implant is that they don’t want to lose what residual hearing they have. That is a very typical comment. They say I have some residual hearing, and I’m benefiting somewhat from my hearing aids. So I don’t want to lose what I have. But in fact, what we know about cochlear implants is that people who benefit the most still have some residual hearing left.
I know so many people who have waited, and then they finally go for it. And they say, gosh, I wish I had done this years ago.
Other advice that I would give is to go to a clinic that you feel confident will give you a really good evaluation. Find professionals who you feel comfortable with and that you have heard from others are competent, caring professionals. For a listing of cochlear implant centers that are active in the field, look on our website at www.acialliance.org.
Faces Behind the Screen is a storytelling project focusing on members of the Deaf and hard of hearing community.