Growing up with a hearing loss
I’ve been making my way through all the books about CI’s that I can get my hands on. Between all of this reading, my visits to message boards and daily messages that come from email lists I belong to, it makes me feel like I’m surrounded by CI users. I told Dave that I keep expecting to turn around and see someone with a CI walking down the street…like they should be everywhere I turn!
The most recent book I finished was Bridge to Sound With a ‘Bionic’ Ear, which is actually a compilation of individual stories rather than one long story focusing on one person. It was really interesting to read various accounts of how people came to choose a CI, how they lived with hearing loss, and how they felt about their CI after they got it.
I noticed that the parents of children who received a CI talked more about the controversy surrounding cochlear implants. Many of them did extensive research and had to make a decision about how to deal with their child’s deafness – teach them ASL, go the verbal/oral route, etc. They spent more time in their essays defending their choice of a CI for their child, whereas the adults who told their stories only mentioned the controversy aspect a few times. I really feel for people who have to make this decision and add it to the list of things you have to worry about as far as your kids go. There are already so many battlegrounds where raising kids are concerned: breast or bottle, stay at home full time or work, circumcision or not, family bed or crib, spanking or time out, cloth diapers or plastic…etc. etc.
It made me think about how I was raised and how my hearing loss was dealt with when I was younger. My hearing loss wasn’t discovered until I was 4 years old or so (I noticed this was a common theme in the book as well, in the stories shared by the adults with hearing loss). Nobody ever figured out exactly when or why I lost my hearing, but I was hospitalized when I was a toddler — I had roseola and a really, really high fever (106 or 107). My mom always assumed it was from the fever. However, there are family members with hearing loss on both sides of my family so it’s really possible that it’s genetic.
In any case, apparently I had been reading lips well enough to fool everyone for a while. My mom said she finally realized I wasn’t hearing her one day when my little brother and I were out in the backyard on the swing set. She called us in for lunch and only my brother came in…I was still out there, swinging on my swing. She realized that I would come in if I saw my brother coming towards the house, but otherwise I didn’t respond. She knew it wasn’t a case of me being disobedient because come on…it’s lunch time! What little kid isn’t going to come in for lunch?! So she did her own little tests and realized I wasn’t hearing her.
I do remember going for many, many tests at Northwestern University in Evanston. This is a pretty far drive from my childhood home (at least an hour one way) so my mom spent a lot of time taking me back and forth for hearing tests and various intelligence tests, to determine whether I should be mainstreamed in school or go to a special school. She was really proud of the fact that I did well on the intelligence tests and went to the local public schools with no special ed classes. I was fitted with a hearing aid for my right ear (which had a severe loss; my left ear had a moderate loss) and as far as I was concerned, it was just a part of me. I never fought my hearing aid or was bothered by it.
In school, I wasn’t teased because of my hearing aid. To be honest, most people probably didn’t notice it because I have long, thick, curly hair and rarely wear my hair up so it always covered my hearing aid. I got more grief for wearing glasses than I ever did for wearing a hearing aid! The only time I can remember kids being kind of shitty about it was when I was around 7 or 8. I was at the local playground and some kids I didn’t know saw my hearing aid when I was hanging upside down on the monkey bars. They started to taunt me and I told them it was a special tape recorder that could record their thoughts. That completely freaked them out and they left me alone after that. (Luckily they were young enough to believe something so ridiculous!)
In high school, as I started being more social and going to parties, I found out that a lot of people originally thought I was stuck up or a bitch because I’d ignore them if they said “Hi” when we passed in the halls. I realized it was kind of a detriment that so many people didn’t realize I had a hearing loss. I found out later that a lot of people assumed I was a burnout (our term for people who smoked pot…this was the late 70s, very early 80s…I graduated in 1982). They’d see me at parties sitting by myself, kind of staring off into space, and assumed I was high. The really hilarious thing is that I found this out when someone passed me a joint and I declined. They seemed stunned when I explained that I didn’t smoke pot, and that’s how I found out that everyone assumed I was a burnout. We got a good laugh out of it when I told them that no, I just did that because I can never hear at parties so I used to just sit back and watch people or listen to the loud, thumping music.
School itself was stressful for me, but I did well and got As and Bs. I’m not sure if my mom ever mentioned my hearing loss to my teachers (I think she did) but the only real accommodation that I got was being seated in the front of the class. Since I also wore glasses by the time I was 9 or 10, I’m not sure if this ‘front of the class’ thing was due to my vision or my hearing loss, to be honest. I was one of those goody-two-shoes kids that the teachers loved, because I never talked in class (I couldn’t hear whispering so I never encouraged it from people). I was always reading. I did all right as long as the teacher didn’t walk around and talk, or talk while they wrote on the blackboard.
I can remember doing a lot of exercises where we had to listen to a cassette tape and then do corresponding worksheets…those were always hell for me. Same with movies, which I just couldn’t understand (no lips to read). Somehow I managed, though. Teachers would always say that I needed to participate more in class discussions, but that was impossible for me since I couldn’t hear what the other kids’ comments and/or questions were. I was always the quiet kid.
Although I always did well in school and could easily have gotten into college, it was so much work to understand everything that the last thing I wanted to do was continue with school. The only field I was really interested in was psychology (I still am, actually) and I couldn’t imagine being a psychologist that couldn’t hear her patients! I had no idea if there were any accommodations available to me in college, because the way I was raised, my hearing loss wasn’t an issue. I had no idea there were any accommodations for a hearing loss, beyond my hearing aid and an amplified handset for my phone.
I distinctly remember my mom having a talk with me when I was young, although I can’t remember how old I was. She told me in no uncertain terms that there was nothing wrong with me, and that I should never feel like I was ‘impaired’ because of my hearing loss. I would get no special treatment, because I didn’t need it. In her view, my hearing aid corrected my hearing loss the same way my glasses corrected my vision.
I can see now the benefits and pitfalls of being raised this way. On the one hand, I never dwelled on my hearing loss and never thought I couldn’t do something because of it. (Although, instinctively, I shied away from situations that are hard for people with hearing loss…for instance, as a teenager looking for my first job or two, I never considered being a waitress because I knew I’d have problems due to my hearing.) I know it helped my mom deal with what must have been devastating news – feeling like the hearing aid corrected my hearing loss 100% made her feel like I was ‘normal’ again and just like every other kid. Plus, how was she to know any different? I was too little to explain that hearing through a hearing aid isn’t like natural hearing and it doesn’t get corrected the way vision gets corrected from glasses.
I lived this way until I lost more of my hearing when I was 28. I knew I was always stressed out and a “nervous” person, but I figured it was just my personality. (Now I realize it was actually from worrying about being put in a situation where I couldn’t hear well.) People gave me a hard time for being quiet and not talking more in groups, for not liking parties or going out to bars and dance clubs. I refused to ask for directions (I couldn’t hear the answer and would look like an idiot if I walked or drove off in the opposite direction from what I’d been told). All these little things I never, ever attributed to my hearing loss because it just never occurred to me that it would affect me. It’s amazing to me now when I look back at my life and see how much my hearing loss affected it.
When I lost the rest of the hearing in my right ear, it shattered me. I was absolutely devastated and terrified. For nearly 30 years my hearing had been stable. It had gotten a little worse over the years (my left ear now had a moderate-to-severe loss) but nothing major. I upgraded my hearing aid every 10 years or so and that was about it. When I went completely deaf in my right ear, I had no hearing aid to fall back on. I could still hear a little bit without hearing aids but fear of the unknown was the biggest factor. Why had this happened? Would it keep going and would I lose all of my hearing over the next couple of days? Or would it happen again in a year or two? How would I function?!
…This is getting very, very long so I’m going to finish this up in a day or two. It’s the second half of my story, where I discovered accommodations and learned to be up-front about my hearing loss with people….how that changed my life and my attitude.