When you're deaf, it's hard to admit you don't like it, says woman who got cochlear implants

Scroll down for a full transcript of this interview.

On her first day with cochlear implants, Bev Biderman remembers staring at a plastic bag on her kitchen counter.

"It was making a rustling noise. Who knew?" says Biderman. "I thought they just rustled softly in peace."

She then turned to chop some carrots, only to be stunned again when she heard them squeal against the knife.

"It was exhilarating," she says. For the first time since she was very young, she was hearing. 

Biderman was born with a hereditary hearing impairment. She started to lose her hearing as a small child, and by the time she turned 12, she was totally deaf.

She was in her mid-40s when a specialist told her there was another option. Cochlear implants wouldn't cure her deafness, but they would allow her to perceive some sounds.  

I was always on the alert to the possibility that someone was calling me behind my back, or that a truck was going to run over me.- Bev Biderman

"I had to make a choice," she says, and that choice was a difficult one.

Cochlear implants bypass the ear by gathering sounds through small microphones and sending them as electrical impulses through an implant connected to the auditory nerve. In other words, they simulate normal hearing.

Until that point in her life, Biderman had been managing without hearing. But it wasn't easy. She grew up during the 1950s and '60s, when there were fewer accommodations for deaf people. She read as much as she could to keep up in school. "I worked harder than everyone else," she says.

And she did well. But day-to-day life was challenging.

"I was always on the alert to the possibility that someone was calling me behind my back, or that a truck was going to run over me, or that I wasn't understanding what was going on," she says.

But Biderman had worked her whole life to push back on a stigma that deaf people were "not too bright," she says.

"By agreeing to go ahead with the surgery for a cochlear implant, I had to admit that, in spite of all those adaptations I had made, successful adaptations that I had made, it wasn't enough."

Confronted for not 'accepting my deafness'

She decided to go for it. And soon after she got the implants, she became aware of the opposition to the technology from within the deaf community.

"I was confronted by people in the deaf culture for not accepting my deafness," she says. She learned that some deaf people worried that every cochlear implant represented a loss to the deaf culture, and threatened the idea that deaf people were normal, complete human beings who didn't need "fixing."

"Deafness can restrict you — can restrict the life that you live," Biderman says of her own experience. "I've found that with my cochlear implant, those restrictions have been removed in many cases."

She hopes that people with a hearing impairment have an easier time now than she did when she was young.

"When I was deaf and trying to manage with great difficulty in the hearing world, I was bluffing," she says. "I was pretending. I wasn't authentic.

"I think that, today, I am a much more authentic person."

Transcript

The following is a transcript of Piya Chattopadhyay's interview with Bev Biderman on Out in the Open. 

Bev Biderman: And I will try to speak slowly like this, Piya. Is that appropriate?

Piya Chattopadhyay: You speak how you speak, Bev.

BB: OK. I speak slowly.

PC [voice over]: Deafness runs in Bev Biderman's family. Bev started to lose her hearing back in the 1950s when she was a little kid in Picton, Ontario. And by the time she turned 12, she couldn't hear anything at all.

BB: Imagine, needing at the age of 13, 14, 15 and onward, imagine needing your mother to be the intermediary on the phone for teenage boys, calling you up and wanting to ask you out on a date. [Laughter.] That's a nightmare. So that was very difficult. School was difficult because I just lip read and read voraciously. There were no accomodations for people with disabilities back then. I was the one that had to get to class early or meetings early. I was the one that had to be prepared. I was the one that had to read everything. I overcompensated in the extent in high school that I got an academic scholarship to York University in Toronto. While at university, I continued to get an academic scholarship because I read the required reading list, the supplementary recommended reading list, I read everything. I worked harder than anybody else. But quite often, I didn't even hear the professor. I couldn't understand him. He'd have a mustache or beard or he mumbled or he had an accent.

PC: You worked harder. You had to try harder, and you were successful, as you say. You got a degree. You got a career. How hard was that?

BB: Extremely stressful. I was always on the alert to the possibility that somebody was calling me behind my back, or that a truck was going to run over me, or, you know, that I wasn't understanding what was going on. I remember when I was working at the university in information technology, I became a computer analyst. I remember being so alarmed when I couldn't see anybody and I thought maybe there was a fire alarm and they had all left. That is so stressful. I would come home from work or school just exhausted.

PC: I don't know how to ask you this. The experience is individual for everyone. But did you accept that you were deaf, that that's how your life would be?

BB: Not really. I think that I was trying to pretend that I was a hearing person. I was bluffing. I pretended that I could hear when I couldn't. I didn't tell my professors at university, for example, that I was deaf. There's no point. But also a big problem back then, and I regret that it's still a problem today, is stigma. And people with a healing loss then, and even today, are treated like they're not too bright. And that kind of stigma attached to hearing loss has followed me all through my life.

PC: So when did you become aware that there was another option? That you didn't need to be deaf for the rest of your life?

BB: Well, I am just going to just correct you for a moment, Piya. I'm still deaf.

PC: Thank you for the correction.

BB: I haven't magically become a hearing person. But in 1993, my ear, nose and throat specialist in Toronto told me that he thought that the technology of cochlear implantation might have improved to the point where I could benefit.

PC [voice over]: Okay. So here's how cochlear implants generally work. Small microphones sit on top of your ears. They take sound, turn it into digital signals, and then transmit those signals to implants connected to your auditory nerve, which then feeds them to your brain. In a sense, they can allow someone like Bev to hear. And a doctor told Bev she would almost certainly benefit from cochlear implants. She might not be able to talk on the phone, but she'd be able to hear those sirens and fire alarms, and she'd have an easier time lip reading.

BB: And I had to make a choice. I had to decide if that was enough, and if it was worth it.

PC: And how hard was that choice to make?

BB: Surprisingly difficult. That's because by agreeing to go ahead with the surgery for a cochlear implant, I had to admit that in spite of all those that adaptations I had made, successful adaptations that I had made, it wasn't enough, that I hadn't been successful as I appeared to be. I also had this fear that people would think, 'Oh, poor Bev. She's chasing miracles. She still hasn't accepted her deafness.'

PC [voice over]: Eventually, Bev decided to go for it. She was in her mid forties when she got her first cochlear implants. And for the first time since she was a kid, she was hearing. But it wasn't quite what she expected at first.

BB: It was awful. [Laughter.] What I heard when my audiologist turned me on ‒ that's the expression, your 'turned on date' ‒ when he turned me on all I heard was buzzes and beeps and whistles as the electrodes in my inner ear were being stimulated by the sound coming through, and it just sounded terrible. And the audiologist kept saying wistfully, 'Does it sound a little better now, Bev?' And I said, 'No!' His voice improved a bit in a few minutes and he started to sound like Donald Duck quacking through a long tunnel. But I was dreadfully disappointed, and of course I didn't understand any of the speech without lip reading. That was far fetched. I was going to go home and put this thing away and never use it again. But, you know, we hear with the brain, and the brain is an amazingly plastic thing, and over time, over the next few days, my brain learned to make a connection between the weird sounds that I was hearing and what they meant. So, for example, on the first day I was making dinner, and I remember taking out a plastic bag with carrots and just staring for several seconds at that plastic bag because it was making a rustling noise. Who knew? [Laughter.] I didn't know plastic bags made a sound when they rustled. I thought they just rustled softly in peace. And then, when I was cutting carrots, they squealed, Piya! [Laughter.] They squealed! I swear they squealed. And that was a shock. It was exhilarating. It was exciting.

PC: Cochlear implants have been controversial ever since they have come into common use. You know that, Bev. When did you become aware of the opposition to them from within the deaf community?

BB: Well, quite soon after I got my cochlear implant, I was confronted by people in the deaf culture for not accepting my deafness.

PC: Yeah, because people may be unfamiliar with the actual debate is about. As the argument goes, some deaf people have argued, 'We don't need to be fixed because we're not broken. This is just another way of being in the world,' and that every cochlear implant represents a loss to the deaf culture.

BB: That's right. I don't share that view of deafness. I find that in my case, deafness is a disability. Deafness can restrict you, can restrict the life that you live. I've found that with my cochlear implant, those restrictions have been removed in many cases, and my life is enormously enriched.

PC: And that's your lived experience. That for you, your life is different now than the one you had before. How is it enriched for you?  

BB: You know, I sometimes think that I am more myself now that I can hear with the cochlear implant than I ever was. When I was deaf and trying to manage with great difficulty in the hearing world, I was bluffing. I was pretending. I wasn't authentic. And I think that today, I am a much more authentic person.

This story originally aired on February 25, 2018. It appears in the Out in the Open episode "Breaking Silence".