Monday, April 29, 2013

Monday Misunderstanding 3: We Try to Hide Our Disabilities

It was less than three weeks ago when my cochlear implant processor was revealed for the first time.  I posed for a press photograph, hesitantly and very vulnerably, to the wide readership of the The Glens Falls Chronicle.

In the moment Cathy Dede, the editor, took my picture, I attempted to ignore my insecurities by making a joke: "I guess I should have put puff paint on it this morning so you could see it better against my hair."

She made a comment, seeming to understand my processor was brown to blend in with my hair.

I immediately nodded, agreeing CI recipients choose models closest to their hair colors in attempts to camouflage their circumstances. I then realized I was acting as a spokesperson for the CI world, and a dishonest one too.    In talking about people, I was referring to me.

Through the tremendous gift of the internet, I've come in contact with many cochlear implant recipients throughout the globe.  Social media gives access to photographs, and at times, I've stared at others' images filled with a combination of awe and jealousy.

Some people actually wear their processors like prized medals of honor.  Some people actually FLAUNT them.

Before my surgery, I remember clicking through the facebook photos of a CI recipient. She was a bridesmaid and my jaw dropped when I saw she had worn her hair in a... wait for it... UP-DO.  Unbelievable!  She had unabashedly CHOSEN to let her processor BE SEEN.

I thought, how could she NOT care?

Days before my surgery, I was still coming to terms with the fact (in my mind) I would NEVER be able to wear a ponytail again.  To me, this was a price I'd have to pay to be able to hear, an inconvenience surely, but a necessary step for me to move on in life.

I KNOW.  And I'd be lying if I said I didn't feel a bit ridiculous, and also ashamed, in admitting this.

I can't help but think of other proud CI wearers reading this, shaking their heads at me in disgust.  I picture them cursing me out at their computers and smart phones, telling me to get my head out of my vain ass and get my damn priorities straight.

What's worse is I agree with them.  And though I've come a long, long way, I still worry my processor conveys a negative message: that something is wrong with me, that I'm not pretty, that I'm not normal

Even when I was first activated- in my AUDIOLOGIST'S office, no less- I hesitated trying to attach my processor to my head unless I knew it was concealed.  I had never worn a hearing aid, making it all the more difficult as I struggled to attach the magnet and earpiece.  Just as I started complaining I would never get the hang of it, my audiologist firmly advised me to stop worrying so much about trying to place it perfectly beneath my hair.

I felt stupid. I felt exposed. What was wrong with me? In front of my AUDIOLOGIST, who more than ANYONE knew the truth of my circumstances, I still made attempts to hide.

I'm writing this because as much as I've told people throughout the years that my vanity didn't  impact my decision to seek hearing help, that's not the complete truth.  Even the hearing aid companies tell us through marketing that smaller and hidden is better. Each time I explored options, I was told the sleeker, in-the-ear models wouldn't serve me, leaving me disappointed and hesitant to move forward with treatment. That's not the ONLY reason I didn't end up with hearing aids (they didn't help my level of loss), but still, appearance was a factor.  I imagine someone out there can identify. If you're that person, let's talk about how much this barrier has affected our lives.

For years, in my warped view (and maybe in yours too) NO ONE would ever want their hearing aids or CI (or any other assistive device for that matter) on display unless forced to do so.

But I'm wrong.  And I'm glad.

According to my audiologist, one of her patients, a short-haired, middle-aged male, has a right processor in one color, and a left processor in a totally different shade, together representing the color combo of his favorite sports team.

Some personalization options for cochlear implants.  Original Source: Cochlear Americas

One of my facebook friends, a professor and fellow blogger, decorates her CI processor per season, adorning her head with flowers or butterflies or whatever else grants her self expression.

Check out the blog "Hearing Elmo," about living with hearing loss and other invisible disabilities at

Even a quick internet search led me to a site in which people share ideas to "bring a little bling" to hearing aids, as shown here in this photo of a child with a cochlear implant (My 6 year old, by the way, would LOVE to wear that).

Friends: This Monday misunderstanding is all mine, that if we are "impaired" in some way, whatever it is, surely we want to hide it.

As photos of hearing aid bling prove, this isn't always the case nor should it be.

Though I doubt you'll see me bedazzling my processor in the near future (just not my style), the loud-and-proud folks teach me lessons in self-acceptance, give me hope, and also make me smile.

Why? They're just being themselves.

If you didn't care what people thought of you, what would YOU reveal?


  1. Pam, first of all, you are BEAUTIFUL! Secondly, I always try to hide my processor and I can not WAIT until Cochlear manufactures a smaller processor (not only because it will be easier to hide, but also because it will be easier to wear-mine still causes physical pain on a daily basis). This whole thing might be a woman thing...I still can't bring myself to wear my hair up. Maybe one of these days!

    1. Thank you for your honesty, Teresa. I had guilt and shame admitting my truth to others, feeling I was less of an advocate than those who wear their processors with such gusto!

      I received this comment on Facebook and it comforted me: "This is a journey....we all arrive at the destination in our own time."

      Maybe one day I'll be an old lady with CIs adorned with birds and ribbons, sequins and polka dots. But for now, it's not who I am. And that's okay.

  2. I had never worn hearing aids prior to my implant either. Leading up to my activation I told myself I didn't care if the processor showed or not. My hair did cover the processor so it wasn't an issue. Then the hair dresser cut my hair shorter and shorter. And one of my first thoughts was, "Oh! will my processor show?" Guess I did care after all. However, my short cut is the best I've ever had so I've gotten used to the potential for other to notice it. I'm learning that I'm not as fascinating as I think I am (ha, ha). Haven't gotten any comments yet.

    1. Thanks Barbara. I like your "I'm not as fascinating as I think I am" comment, and my first reaction is to laugh, politely agree, and to point out that parts of our appearances are usually not as magnified as we think they are. Then there's another part of me that KNOWS we see the differences in others, both attractive and not-so-much. I guess I've placed my processor in the "not-so-much" category, but it's an ongoing acceptance journey. Even looking at the picture of me above, I search for the beauty and struggle. It's a blob. A brown blob with a wire. But maybe as the blob brings me greater hearing success, my perspective will change.

    2. Allow me to clarify, Barbara. I agree people often see things as bigger deals than they actually are, but regarding not being fascinating... not so much. YOU ARE.

  3. Dear Pam, I think you should give yourself permission to feel whatever you're feeling about the appearance of a cochlear implant. It's a profound change to your body, and it takes time to process. For a year or so after I got my implant I wore a peace symbol on the headpiece -- both as a political statement (it was during the second Iraq war) and as a way of telling myself that I was giving other people permission to look at it. So, don't feel embarrassed about feeling embarrassed, if you see what I mean. I'm a guy and it was an issue for me. I worked it through in my book "Rebuilt" - can I quote it here? I think it'll speak to you. In this scene I'm in a nursery school for the deaf, watching the kids and speaking to one little girl and her mother.

    “It’s polite to shake hands,” I said, helplessly. Grinning back.

    That got me nowhere. She was hearing me fine. She was just being four. So I turned my attention back to the mom. “You know,” I said slowly, “this is a funny thing to say, but the headpiece looks adorable on her.”

    And it did. Her blond hair was tied back tightly in a ponytail, so the beige wagon-wheel headpiece of her Nucleus 24 implant was as obvious as a barrette or a bow. But it set off the strands of her hair, circle against straightedge, and the colors harmonized perfectly. The very strangeness of cyborg bodies reveals the human nobility of working with the given, remaking, making anew. In his poem _Pied Beauty_ Gerard Manley Hopkins showed that creatures “counter, original, spare, strange” could also be beautiful. This little girl’s headpiece would have given me the willies, once. But now – fifty thousand dollars’ worth of technology, and it looked _cute_ on her. (p. 125)


    1. Thank you Mike. This is beautiful, and it DID speak to me. I am interested in reading your book.