So this week I had my last official appointment with my audiologist about my cochlear implant. Now he is sending me on my merry way, with check-ins only if I have a problem. Unlike many people with implants, I was already talking when I got mine, so I’ve avoided ongoing speech therapy (whew).
I thought you all might be interested in seeing my audiogram. These are hard to read if you’re not in the medical field, but essentially they show low and high pitch, like the difference between one end of a piano keyboard and the other (running from left to right), and soft and loud sounds (running from top to bottom). This audiogram has little captions to help people understand it.
At the bottom of the audiogram, you see marks showing what I heard before the implant – the X marks are for my left ear, and the circles are for my right ear. As you can see low pitches had to get REALLY loud for me to hear them at all, and as the pitch got higher, I could barely hear it unless it was booming. After a certain pitch, it didn’t matter how loud things were – I couldn’t hear it at all (that’s why the marks only go halfway across the audiogram).
At the top of the audiogram, you see that my hearing in my right ear is now “normal” when tested by the audiologist while I’m wearing my implant. If I take out the implant, I hear absolutely nothing in my right ear now (because they had to destroy my inner ear to put the cochlear implant electrodes in there).
Now gentle reader, I suspect your eyes are starting to glaze over, so here’s a different version of the audiogram, showing common speech sounds and other noises, so you can see how the boring audiogram matches up to sounds in the real world. As you can see, with my current levels of hearing, I should supposedly be hearing pretty much every sound that hearing people can hear, from gentle “sh” sounds to lawnmowers.
There were a couple of interesting things that happened at this appointment, but one of them was that I had an interpreter and an interpreting intern (someone who hasn’t finished a degree program but is already starting to get experience working in the field). The interpreter and intern were with me in the soundproof box during my hearing test. Instead of being elated with the results and focused on the test of my hearing with an implant, I watched as the interpreter and intern tried to hide their shock at the results of my test. I also had a speech discrimination score and got a 90% at recognizing speech. I was surprised by the intensity of my anxiety and negative feelings at their response to my tests, given that I usually don’t really care what other people are thinking (and in fact like to mess around with people’s attitudes sometimes).
But I found myself explaining to the interpreter and intern that I wasn’t really hearing tones with my implant during the test – I was hearing them as static, tones, beeps, random noises…but not tones. So a perfect audiogram didn’t mean I had perfect hearing.
They had seen me during the speech discrimination test, too, but I still felt weird about having them witness it without explanation and context. I know they saw (and heard) the whole thing. They heard the CD play a voice saying “The girl walked the dog outside.” They saw me say, “Outside! Something…oh wait…a dog! Someone walked a dog…wait! I think it was ‘The girl walked the dog outside.’ ” In other words, they saw my brain scrambling to put together a coherent sentence from the bits I was hearing and what I already knew about the kinds of sentences audiologists would be likely to give me. But I still started blathering something about, “You know, years of lip-reading and many years as a hearing and hard-of-hearing person who uses English as a first language gives me context for this, and that’s why I’m able to do it. It’s not just the implant…” blah blah blah.
I was disgusted with myself. Who the hell cares what they thought? Why did I do that? I tried to tell myself that the intern needed the context before she starts thinking a) “Why am I here for Wendy when she doesn’t need an interpreter?” and b) “Implants are better than I thought.” But I have no idea what she was thinking. And she was there to facilitate communication, not to judge anything or get an education about implants from me.
Then to make matters “worse,” we realized that at my last appointment there was a mix-up with communication. So at that appointment, my audiologist had tried to explain about the three channels on my implant, and I looked to the interpreter to give me accurate information because lip-reading the audiologist at that exact moment was causing confusion. The problem is that I think the interpreter mixed up the channels too (I happen to know she had a learning disability of some kinds because she told me before the appointment so maybe that was part of it). Anyway, it turns out I’ve been experimenting with the wrong channels. So this week we cleared everything up, I turned on the channel I was SUPPOSED to be using for the last three months, and I said, “Wow! The sound quality is really good on that!” And my first thought wasn’t “YAY!” My first thought was “Great – now the interpreter and intern will think my hearing is even better than what they saw in the booth” AND…drumroll…I was really upset about it. The audiologist checked in on how the implant is working in various contexts and he was very pleased. I keep downplaying the good things or trying to add caveats (“Yeah, but…”). He said something about me being so negative, and I realized I was being negative because the interpreters were in the room. If it had just been me and the audiologist, I would have been as pleased as he was.
When we left the appointment, the very first words out of the interpreter’s mouth (and signs on her hands) were “WOW! You are such a success story!” By now I was ticked off at her, the intern, and myself. I gave my spiel again about how context is everything, how I really just need the implant to support my lip-reading, how it helps with communication with my sons’ friends, etc. But I really just wanted to get in the car and get out of there. I felt on the verge of tears, but also couldn’t understand why I was so upset. It seemed completely out of proportion and not like me at all.
I got in the car and thought about what had happened and I realized I wasn’t really ready to cry or absolutely furious…I was afraid.
Then all the pieces came together and I understood what was going on. I am a confident adult woman who is well educated. I work in a disability-friendly university sometimes referred to as the Harvard of Disability. I am totally comfortable with myself and actually enjoy the lovely mess of contradictions in my life. But I have hearing people see me hear and I am afraid to the point where I can’t even immediately understand what I am feeling.
I hesitated to blog about it, but this is a teachable moment. (“If it could happen to HER…”). I have fought for 20 years to get interpreter services and convince people I am Deaf. Even one of my best friends for many years in Minnesota suspected I was lying about how much I could actually hear. Now I’m getting a perfect audiogram, and it seems a part of me is just terrified someone is going to take away my interpreters, or think I should be hearing everything like a hearing person, or get angry about why I’m still missing information in conversations or not believe me. This is how ableism looks when it gets in our heads and hearts. I’m on a campus where nobody is going to read this and take away my interpreters. Nobody is going to accuse me of lying. People here totally understand how the implant works and that I’m still Deaf culturally and very very hard-of-hearing in a functional, day-to-day way. They will still respect me. They will understand.
But not everyone would. I have had truly terrible experiences with universities trying to take away my services, refer me for therapy because “if you were just more confident you could lip-read better,” trick me into showing them I am really hard-of-hearing, or give me terrible interpreters because I obviously don’t need sign language and must use “sign supported speech.” Gloria Steinem once said the worst part about oppression is that it’s like rain on a statue – the rock seems so firm and solid, but really it is slowly wearing away and losing its form. So it doesn’t matter if I am a perfectly capable amazing person with wonderful co-workers I trust, because ableism and audism have still worn me down in ways I don’t even fully understand, only to rear their ugly heads at something like an audiology appointment where we should be celebrating that I took a risk and it paid off.
I see this with other people who have disabilities, too. The person with mental illness who is doing particularly well, but minimizes it lest anyone now pile on unreasonable demands and stresses. A woman whose epilepsy is cured but inexplicably doesn’t tell anyone for four months. The student with dyslexia who is getting good grades but feels like a fake. The man who gets a well-deserved promotion and wonders if he is now the token guy with a wheelchair in the department. People with disabilities sometimes assume that when good things happen, it’s just a matter of time until that bites you or life sucks again. We worry about the power professionals have over our lives and what will happen when they misunderstand, even if they are allies (as interpreters usually are).
The only cure for this internalized ableism is to face it head on. It’s like ghosts on the many popular ghost-hunting TV shows. You can run in with a tape recorder and camera, or scream and run for the hills. I choose to write this blog and face it down. My implant is a success. I like it. I find it useful. I am impressed that my audiogram looks this good. I am excited about messing around with the implant to see what it can do. I am delighted I am getting enough to sometimes figure out speech without lip-reading. I am also still Deaf. I love ASL. I need ASL. Take away my interpreters and I will fight, because I will win. Accuse me of lying about anything, and I will assume that says more about your ignorance than my level of hearing or deafness. And FYI, I am not alone…there are co-workers, friends, a Deaf community, interpreters, family, and an audiologist in Rochester who are all on my side. I am pretty tough, but with a community I can accomplish damn near anything I decide to do. I will re-carve the statue ableism is trying to break down, and it may not look like the original, but it will be stronger and it will be beautiful.