Disability Awareness & Texts & Yay!

Growing up with a physically disabled Dad in the 70’s and 80’s was not something we talked about as a family. We talked about the logistics of dad’s health problems quite a bit (who would take care of us when dad was in the hospital, what we couldn’t eat, where we could go on vacation), but we didn’t talk about about how his disabilities affected us as a family unit, how they affected my mom, how they affected me or my sister, or, perhaps most importantly, how all of this had affected my dad.

Feelings were not discussed at all.

My dad was born in 1935 80% deaf because his mother had measles while pregnant. (You can imagine my rage at the measles outbreak this past year from those who choose not to vaccinate. . .). He was forced to wear a giant hearing aid around his neck most of his younger life, but as he got older his hearing aids got smaller and looped onto his glasses. The high pitched beep of a dying or misfiring hearing aid battery was a constant in my life; his hearing aids would screech when we hugged him, when he turned them on and off, and just every now and then (like during the quiet part of mass) for good measure. He loved to take them off as a way to ignore us when my sister and I whined, fought, or were just too chatty.

[Literary reference: When I read the short story “Harrison Bergeron” by Kurt Vonnegut, Jr. for the first time, I immediately thought of my dad. In the story, a dystopian future, all humans have a high pitched alarm that rings in their head. This sound is meant to keep them unable to think clearly and therefore complacent. My dad had been gone for years when I read this story, but oh how I wanted to ask him how that squealing, ringing noise he endured had not driven him mad.]

As if life hadn’t dealt him a crappy hand with his deafness, my dad had juvenile onset diabetes around the year 1950. Because of the lack of knowledge of the disease and how to treat it back then, his body suffered many physical casualties: due to poor circulation he lost the top digit of his middle finger from ink poisoning and his feet he had constant foot ulcers; he had what they call peripheral neuropathy (which basically meant he could not control his feet and had braces on his legs), he began to lose his sight and had multiple laser surgeries to keep from going blind, his knees fell apart and required many surgeries, his heart failed and he had open heart surgery, and lastly his kidneys failed. A few years after his kidneys failed, he died from a blister on his heel at the age of 61.

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{Photograph of my dad, age 5?. I was looking for one of him with his hearing aid around his neck, but I don’t have one. In all the photos I have, the hearing aid is removed.}

Each and every time I write that list, I am amazed and appalled by all he, and we, endured.

But we never talked about any of it.

That’s why when I read the first few pages of El Deafo by Cece Bell over the shoulder of my daughter, my eyes welled up immediately. Here, in the text, was a little girl with a giant hearing aid around her neck. I had seen a hearing aid like that in a photo of my dad as a kid! Alexandra, about a dozen pages into the graphic novel, tells me it’s a book about a little girl who loses her hearing from illness when a little girl and is deaf. I was captivated, surprised, jubilant–there’s a book about this?! For kids?! Amazing! Alexandra loved this book (a birthday gift from the daughter of a fellow English teacher, of course) and as soon as she finished it, I picked it up and read it in an hour. It was incredible, and I had one of those heart-stabbing moments of grief when I wished more than anything that my dad could read it with me.

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Next, I finally read Wonder by R. J. Palacio.This book is for slightly older readers (my daughter just finished 2nd grade), but it was so deeply wonderful. The main character of the text is a 5th grade boy named Auggie (whose face is massively physically deformed) and his entry into school after having been home-schooled his entire life. What I liked most about the text was that it told the story of his year of school, but it told it through various kids’ perspectives–Auggie’s, his sister’s, his friend’s his other kinda friend’s, his sister’s friend–so you, the reader, get to see various points of view on how people see Auggie’s face, their responses, their realizations, and their feelings about him and themselves in relation to him. As someone who lived on the periphery of a handicapped parent, I appreciated the multiple voices and definitely saw myself in a few characters. I must admit, I cried–like, shed actual tears–twice at the end. And, again, I wished my dad were around to read the book.

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More than anything, I am happy these books exist. They both chronicle the struggles of those labeled disabled and their individual desires to be seen as normal people, but these books also explore how the protagonists’ peers act around them, and they teach great moral lessons to the reader about how one should (and should not) treat someone who might be physically different than them. Both texts have received many accolades and much readership, which–to me–means young people today are ready to have these conversations.

That was not how it was when I was growing up. Seems to be proof that we continue to evolve as humans! Yay!

Go buy them and read them NOW. For your kids or just for yourself.

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{Photo of my dad, age 12ish?, with friend laughing at a joke book. I love this one.}

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