Editor’s Note: Portraits of Resilience is a photography and narrative series by Prof. Daniel Jackson. Each installment consists of a portrait and a story, told in the subject’s own words, of how they found resilience and meaning in their life.
My hearing loss is genetic, and it runs in my family. When I was in grade school, they would bring groups of students in to the nurse’s office for an annual test. We would put on these big rubber headphones, and we were supposed to raise our hand when we heard a sound. I would watch the other children and when they raised their hands, I would raise mine.
I didn’t know I had hearing loss. It just didn’t enter my mind what the purpose of the exercise was. Finally, when I was about 10 years old, I stopped raising my hand. That was when I got my official diagnosis for hearing loss.
I don’t remember a single conversation with my parents about my hearing loss. Not one. I’m from a very big family; I’m the eighth of nine children. My father ran his own business and was working non-stop to support all of us. My mom figured if I wasn’t bleeding and I wasn’t in jail, things were good. And I was doing well in school.
My father passed away some years ago. My mother is still alive, but she’s in a nursing home and she has dementia. I see her every week. Like a lot of older people, her voice has gotten a little softer. I found myself saying, “Oh, I’m sorry, Mom. I’m sorry that I don’t hear better, that I keep asking you to repeat.” She said to me, “Well, I feel bad.” Maybe that’s why she didn’t address it — because she felt responsible. When I’m ready to start asking the questions, there is no longer access to the information. It’s kind of bittersweet.
I have a typical sensorineural hearing loss. You start losing the high frequencies first — for example, the sound of crickets on a summer evening. I remember hearing them when I was very young, and then they just dropped off. About every 10 years it would fall back a little more, a little more. I would just make do. I was strategic about how I would communicate. I relied a lot, and still rely a lot, on lip reading. I would position myself so I could see the speaker. I’m a very good guesser too, based on context. That’s why accents can throw me, because my guessing is based on a Boston accent.
After college, I would occasionally go to an audiologist for a check-up. Each time they would say, “Yes, you definitely have serious hearing loss.” But the loss was so profound that a hearing aid wouldn’t have assisted me. A few years ago, my hearing had declined to the point where I needed help, so I went to get evaluated again. I remember asking the doctor, “Am I deaf?” She said, “Yes, with a capital ‘D.’”(Meaning from an audiology standpoint.) I wasn’t shocked or dismayed. I wasn’t upset. I was just more like, “Well, why didn’t I know that?” They told me, “You’re a candidate for a cochlear implant in either ear. You can pick an ear.”
They had different groups where you could find out more about the devices and meet people who had them. At these meetings, they had live captioning. I was shocked. How come I didn’t know about this? That launched me into this whole advocacy role because I realized if I didn’t know, I’m sure that there are plenty of other people out there that don’t know either.
It is actually not an elaborate surgery at this point. They make a little incision behind your ear. They pull the skin back and then they drill a hole in your temporal bone, to get access to the cochlea. Then they insert the implant under the skin, thread in an electrode, and stitch you up. You wait for about four weeks to heal, then you go in and get the external device. The audiologist will do a ‘mapping’ and will set a certain program and introduce you to sound.
You have no idea how loud the world is, and it is really loud when it first gets turned on. In addition, you have to start understanding what these sounds are. Things I hadn’t heard before, like everything that beeps. My microwave beeping, my dishwasher beeping, all these things that I didn’t know made sounds. Riding in the car, the road noise just felt like it was torture. After a while you start to get used to it. I was walking the dog with my husband and I heard a sound. I asked him if it was a car alarm, and he said, “No, that was crickets.”
The implant doesn’t give you normal hearing. I think I was hoping I would use all the skills that I had acquired through the many years of my hearing loss, and then I would add onto them some new skills by virtue of the implant. That’s not how it works. It’s like wiping the board clean and starting over. That depressed me to some degree, so I just tried to keep going.
I felt a bit embarrassed because I felt like people that I worked with and family members were anticipating this big change. It was a big change, but I think that they were all also a little disappointed that I still had hearing difficulties, although nobody said anything to me. It’s not that anyone told me that I would have perfect hearing, but I just didn’t really understand that I would still be a person with hearing loss. I just don’t want to have hearing loss. I just don’t.
There is a lack of understanding about hearing loss. It’s just a kind of a lousy group to belong to. When I ask people at an event to use a microphone, I get resistance. I’ll say, “Why don’t we just have open captioning?” and sometimes I’ll get, “Well, that will be distracting for everyone.” You will ask for something to assist you, like remember to get my attention before you start to speak, things like that. People will forget and you have to ask again. I don’t take it personally, but part of it tells you, well, you’re not important. It makes you feel a little less valued.
Oftentimes, people don’t think. If you don’t hear them, they’ll say, “Oh, it wasn’t important.” That’s the worst thing. I know they don’t realize it, but it’s a message that says you’re not important enough for me to repeat that.
People ask me if I’m deaf. It’s hard to know what to tell people. I’m not fully able to do everything a normal hearing person can do, but I’m not really accepted in the Deaf community, since I don’t have fluency in ASL. I am deaf, and I would like to be more Deaf — meaning belonging to that group.
I’ve said to people things like, “Well, you know, I’ve come out as a deaf person.” I was pretending I was a normal hearing person, but I really wasn’t. When they told me I was deaf, it was like telling me I was from another country, and I didn’t know it. You start finding out, well, what does that mean? What’s that country like? What is the culture?
Now I’m learning ASL. It’s very attractive to think that my effort can actually pay off and can introduce me to people who I can easily communicate with, who don’t get annoyed at me because I don’t hear well.
I find a lot of support and power in connecting with other people who have similar challenges. The hard part is finding those people. I do talks on advocacy and education about communication access. I just keep hoping that I’m emboldening more people because if enough people talk about what’s a challenge, then it becomes not a big deal.
We want to make a community that’s compassionate and inclusive, but how do you do that? If more of us start talking about what’s going on with ourselves, with our challenges, then, in fact, we are doing something tangible, right?
Everybody has something going on. Everybody. No one is immune. I tell people, if someone tells you that they have nothing going on then they’re lying. Really. Everyone has challenges, right?
Barbara Johnson is a support engineer in Information Systems and Technology.
This project is supported by the Undergraduate Association’s Committee on Student Support and Wellness, chaired by Tamar Weseley ’17 and Alice Zielinski ’16. To participate in the project, or to learn more, contact ResilienceProject@mit.edu.
There are many ways to find help. Members of the MIT community can access support resources at together.mit.edu. To access support through MIT Medical’s Mental Health & Counseling Service, please call (617) 253-2916 or visit medical.mit.edu.
Image and text copyright Daniel Jackson, 2016.