Documentary Follows up on Adults Who Were Treated for Hearing Loss as Children

Gelsey Lee, at right, with Jane Madell, her childhood audiologist.

I just finished four days of interviewing some of my old “kids” – now young adults in their 20’s and 30’s with hearing loss. I was their audiologist while they were growing up and helped them and their families navigate the world of hearing loss. The interviews were for a documentary I am making with Irene Taylor Brodsky, an Emmy and Peabody award-winning documentary film maker www.vermillionpictures.com. Irene is the mother of a child with a cochlear implant and the daughter of two deaf adults, so she understands hearing loss.

The project started when I was looking for topics to include in my blog. I thought it would be interesting to interview some of my old kids to see what they had to say about growing up in the mainstream with hearing loss. I wanted to interview these former patients because they are in a group that had the opportunity to make use of the new technology that is now available. Those who are a bit older did not have the opportunity to use the newer, more powerful hearing aids or cochlear implants during their critical language learning years, and so had a more difficult time. I wanted to see how this particular group did.

“LET’S MAKE A DOCUMENTARY”

I contacted a few of these young adults and all were excited about talking to me about the project. I was expecting to interview them and write up the interviews. But then while I was presenting a workshop in Oregon, Irene came to speak to me. I had evaluated her son years before when she and her husband were considering a cochlear implant. As soon as we started talking I told her about my idea and we looked at each other and said let’s make a documentary.

The first thing we needed to do was raise money. Although Irene and I were prepared to donate our time, we needed to pay for airfare to get Irene and her crew to NY, rent equipment there, etc., and get me to Oregon for editing. Fortunately for us, the Oberkotter Foundation was also excited about the project and gave us sufficient funds to get started.

Shezaad Zamen being interviewed.

We set up a film studio in my living room and invited some of my old “kids” to come. We spent two hours with each person. Everyone was excited about participating. One young woman flew in from LA to be filmed. (She is an Ob-Gyn resident and had 36 hours off.) Someone took the bus back and forth from Boston for the day. A third person came from Washington, DC.

In all we interviewed 16 people. They were quite a mix. Two physicians, one social worker, a primate psychologist, several computer programmers, an accountant, a few people in the music business, and one on her way to Africa for the Peace Corp. Twelve had cochlear implants and four wore hearing aids.

A bunch more wanted to participate but we could not fit them into the four days we had for filming or they had vacation plans on the dates we were filming. (After all, it was July!)

WHAT DID WE LEARN?

Susan Kornfeld speaks with Jane Madell, as Rob Finch, the director of photography, looks into the camera.

The group was amazingly positive. They all were happy to have been mainstreamed, and had very positive things to say about the experience. They reported having had friends in school and generally enjoyed school. Yes, they had to work hard. They talked about the people who helped them succeed – parents especially, audiologists, therapists and other mentors. They talked about some of the discrimination they faced – for example, when people were not willing to make accommodations, but basically they felt that they managed and were happy for the experience.

About half are married, one to a person with hearing loss and the rest to people with normal hearing. I asked if they had thought about having children and how they would feel about having a child with hearing loss. They all said that they could handle it. They would know what to do having been through it themselves. The one thing they all were sure of was that they would have them get cochlear implants very early. Four of the group already have children–all with normal hearing.

There are a few more of  my “old kids” we hope we can interview. Then we have to do the editing. We are expecting to use the material we have to educate professionals in the field of hearing loss and to help parents of young deaf children look to the future. The film may also have a wider audience. We shall see.

I can tell you one thing for sure. I am very very proud of every one of these young people who have overcome significant odds to become who they are, and every one of them is a happy, thoughtful and loving person who is happy with his or her life. They are amazing and I am honored to have been part of their lives.