A couple weeks ago, a mother of a child with spina bifida wrote a courageous column titled “My Child With a Disability is Not My Hero,” which has been tumbling around — along with the usual gazillion other thoughts — in my brain.
Now, I’d like to say a few things.
First, I agree in many ways with Sarah Sweatt Orsborn’s perspective as a parent, and I applaud her for being brave enough to write about it so honestly. It’s an important question for parents of children with disabilities to think about. Orsborn writes, “The tendency of parents of kids with special needs and disabilities to say their kids are ‘heroes’ makes me deeply uncomfortable.” She explains that she feels this way because to call children with disabilities “heroes” amounts to demarginalizing and dehumanizing them. They’re just kids, and should be allowed to be kids first and foremost, not put up on a pedestal or given standards that may be tough to live up to.
Now, as someone who grew up and lives with a disability, I’d like to chip in my piece: a “Adult With a Disability” perspective. The idea of calling someone with disabilities a hero just because of what they have and who they are also makes me uncomfortable. Here’s why.
I was born deaf. I grew up deaf. I’m still deaf and will be deaf for the rest of my life.
But I am not a hero. My simply being born deaf or being deaf is no reason to call me a hero. It is just part of who I am. I was born that way. Are you a hero because you were born with blond hair? Are you a hero because you were born with brown eyes? Are you a hero because you were born with a talent for math or a talent for kicking a soccer ball?
I started dreaming when I was about 5. Over the years, as that dream began to take form, it had big gentle brown eyes and a soft velvety muzzle that would nudge me for carrots and hugs. It had the spirit and courage to jump any wall, the talent to win blue ribbons, the gentleness to take care of its rider, and the patience to listen to a girl’s confidences. It would be my best friend through thick and thin, in a world where other kids were fickle and cruel and books didn’t respond to me or lean into my brushes and embraces. It would be my partner in adventures, the best of Starlight, Black Beauty, Misty, Artax, and every other fictional horse rolled up in one. It was a dream for which I begged and pleaded, worked and saved, and nurtured for 11 years before it became reality and I held it in my hands.
Last Tuesday, that dream started its usual trek up from the pasture for his dinner. But this time, he never made it. Somewhere along the corridor between the pasture gate and the stall, he laid down and his soul left his body.
The next morning, I woke up to learn that for the first time in 14 years, I no longer owned a horse. The dream I’d nourished for 25 years had died.
Now that Kristin Henson’s book, “Dirty Signs,” has been published and outrage is now circulating among the Deaf community on social media, I thought it a good time to reprint the column I wrote in early 2012 about freedom of speech and why it’s so important that we understand the distinction between banning and protesting a book.
People who write negative reviews on the book’s Amazon page are doing the right thing.
People who write protest letters to the book’s publishers are doing the right thing.
People who say it should never have been published are saying the right thing.
People who say it should have been banned in the first place are saying the wrong thing.
Henson’s book should never be banned, but I can support protesting a majority group member’s economic exploitation of the endangered language of a minority group. It is immensely unfair that even as thousands of deaf children are being deprived of or actively barred the opportunity to learn American Sign Language, a hearing person with very little connection to deafness is profiting from perverting the language (not only by teaching only dirty signs, but also by doing them wrong).
I know people are not going to like my position, but I will always, always support our constitutional rights to freedom of speech and the press. So, without further ado, here’s the original column.