What Is Normal? Cochlear Implant Edition (from April 2018)
- aray436
- May 16, 2023
- 5 min read
Updated: Oct 1, 2024
Note: this a blog post originally written as part of coursework for my Aural Rehabilitation class in 2018. I've made slight edits. I don't work in aural rehab at all and don't have the skills to work with the Deaf community—but if your loved one is Deaf or Hard of Hearing, I hope this post serves you.
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Years ago, in my days of 2008 recession unemployment, a woman in my neighborhood offered a free (!) quilting class. Her home was decorated with stunning quilts she had made and I, inspired and optimistic, was ready to do some stunning of my own.
She started with the simplest of quilt designs, the log cabin. So named because it’s basically just stacking fabric logs. It’s simple and straightforward, she told us. Anyone can do it.
But I could not. My pieces would start out straight. I would think I was making a perfect square. Indeed, I did make a perfect square! I would admire my perfect beautiful square and put it next to the quilting square I had just finished assembling, ready to envision the stunner this quilt would be. And—
Crooked.
Every time.
Infuriating!
I couldn’t figure it out and didn’t have the patience to figure it out. Then I started working and now here I am 10+ years later back to thinking about the quilt I never finished because of those darn crooked log cabin lines.
But recently I learned something: corners are tricky even for the pros.
So tricky, in fact, that carpenters use a tool specifically for making corners exact. They use it to cut wood into uniform pieces so that things like wood planks, walls and beams all fit together at perfect 90-degree angles.
The Romans had a word for the tool. They called it a “norma”.
Fitting In
Over the centuries the word has made its way into our language and shaped our very existence. “Norma” is the ancestor of “normal”.
One of our strongest, most pervasive cultural values is “normal”. We just want to be normal! We just want to fit in! We want everyone to fit in and be normal.
It means that there is something to “fit in” to. It means that we have a norma to measure and be measured by.
It means that when a person like Heather Artinian is born, it is highly controversial when her parents decide to forgo an implantable device. It isn’t normal to want your child raised deaf. The norm for our culture is hearing and speaking (and, way too often, shouting and refusing to hear).
The benefits are obvious to the hearing world. They’re so obvious, in fact, that it’s unthinkable that you wouldn’t choose an implantable device. What about music? What about your children's voices? The fire alarm? Your name in the doctor's office? The crashing of waves on the shore?
What we “normal” people don’t see is everything we are missing out on. Is it really better to hear with hearing aids than not to hear at all? Is it better to hear the world via the robotic tin of a cochlear implant than to experience the world through the rest of our senses? What linguistic richness, what dear friends and tight-knit communities are we missing out on because we aren’t part of Deaf culture?
Never mind that the risks of surgery are severe and permanent. To choose a bone conduction implant or a cochlear implant is to choose all the risks that are associated with surgery, and to pile on a few more: permanent deafness, for one. (Deafness in itself is not a bad thing of course! But probably not the intended outcome for someone undergoing an implant surgery.) And for another, as highlighted by Heather's experiences, navigating both hearing and Deaf worlds.
If the implant doesn’t take—if it’s rejected by the body—you’re out of hearing forever. If it does take, who’s to say you’ll like it? Who’s to say you won’t regret the decision to be a full member of the Deaf community?
You, but you won't know until the surgery is done.
Normal is a construct. Connection is a need.
If you’ve grown up in Western culture, you’ve grown up in a binary system: there is normal, and there is abnormal.
But there’s a tiny town in Belgium called Geel where the abnormal come to reside as guests. In the US, we would treat these guests as patients, treat them with medication, treat them with a healthy dose of wariness.
But in Geel, they are just part of the “normal”.
When I hear stories like Heather’s, when I hear about people—kids and adults alike—refusing hearing aids or being forced to wear them or not wear them, I think about Geel.
It's a place I can't quite imagine. As an American, I'm all about the self-help, fix everything, solve-your-way-out-of-every problem approach to life and people. We're optimistic and hard-working. We believe that there is one right way for things and we work to cram everything into that one right way.
We're familiar with achievement, with approval.
But acceptance?
(There's a reason talk therapy has a thriving market in the US.)
It is so hard for us to accept that normal is a concept. And it is just a concept. It's just an idea, a way of understanding something.
Even in communication disorders, we think in terms of normal and abnormal. We use normative data to inform our decisions. We use mainstream culture preferences in hearing and speech to guide our recommendations, decisions and treatments.
I think to focus on the pros and cons of implantable devices is to miss the point.
We communicate to connect. The only way I know how to communicate with the people around me is through spoken language. As a member of the Hearing community, I would prefer any biological kids I have to speak and hear like me. I want them to know my voice, and I want to know theirs. I want to communicate in the way that's most comfortable for me.
But ultimately, is it that I want to be comfortable? Or that I want to connect with them?
The pros of implantable devices all have to do with connection. One of the biggest pros of Artinian's implant was to connect with the broader world. She wanted to be able to participate in the Hearing world, too.
The cons of implantable devices all have to do with disconnection. One of the biggest cons of Heather Artinian's implant was disconnection from Deaf culture, from her parents.
The same goes for hearing aids and other assistive devices.
I want as a human and as an SLP to always bear in mind that normal is for carpenters. My work is to facilitate connection. It may be that an assistive or implantable device is the best thing for a patient. It also may not be.
I want to throw out the concept of normal.
Normal is for floors and houses.
Acceptance is for people.
Connection is for people.
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More on Heather Artinian:
More on Cochlear Implants, Hearing, Deafness and bridging two experiences
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