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June 3, 2014

Why I Write About Characters with Disabilities --- Guest Post by Cammie McGovern


Like most characters in young adult novels, Amy and Matthew from SAY WHAT YOU WILL by Cammie McGovern spend their days thinking about growing friendships, young love, child-parent relationships and learning to become comfortable in their own skin. Unlike most YA characters, though, the two protagonists have disabilities --- Amy was born with cerebral palsy, and Matthew has OCD.  In the below blog post, Cammie explains why she decided to write about teens with disabilities --- and what she hopes readers will take away from it.

The easy answer to the question of why I write about teen characters with disabilities is that I live with one.  My oldest son, Ethan, is an 18 year old with moderate-to-severe autism.  Though he is a social fellow, pretty well liked around school and happy about 80% of the time, he will probably never live independently or hold a job.  When you first read this, it sounds like a pretty tragic thing to say until you’ve lived with it for a while and learned this:  Out of 69.6 million families in America, 20 million have a member with a disability severe enough to limit their ability to live independently.  In 2012, the US Dept. of Disability Statistics reported that 1.2 million teenagers between the ages of 16 and 20 identified themselves as having a disability severe enough to impact their future ability to hold a job.   Over a million!  That’s a LOT of company to have.  At a certain point, your life starts to feel less like a tragedy and more like a party you never wanted an invitation to but there it was, in the mail anyway.

One of the smartest things I did in the early years after my son was diagnosed was to get together with a small group of other mothers and start a center called Whole Children that runs recreation programs for kids with disabilities.   It’s grown enormously in the ten years since we opened our doors; we now serve over 600 kids, teens and young adults, which means I’ve gotten to know a lot of teens with disabilities.  Once you do, almost all of the old stereotypes fall away pretty quickly. 

When you are this different, you have no choice except to simply be yourself. 

I know kids with autism who are very hammy --- limelight-grabbing performers if they’re given the chance.  I know kids with CP who sign up for every dance class they can.  But here’s one of the biggest stereotypes I can dispel after watching my son and his friends get older:  Kids with disabilities are absolutely interested in relationships and sex.  Once you realize this and do a little reading, you understand:  with a future where jobs and independent living might, by necessity, be curtailed, the happiness factor for teenagers with disabilities goes up exponentially when they have loving, supportive friendships of all kinds by the time they reach young adulthood.  In my debut YA novel, SAY WHAT YOU WILL, this is what Amy intuits better than her mother and why she fights so hard to establish a real relationship with Matthew.

I’ve also learned this:  There’s a lot we can all learn watching a group of teens with disabilities interact with each other and with the world.  When you are disabled, you stand outside of all pretext of normal. You don’t have to worry about looking fine or perfect, because you aren’t.  As a parent, it’s a terrifying adjustment at first and then at some point, something shifts and you see everything a little differently.  You realize your child has grown up accepting something it’s taken you years to understand:  When you are this different, you have no choice except to simply be yourself.

I think about how often the siblings of kids with disabilities seem to be --- by and large --- a pretty good set of kids:  self-confident, nice, aware of the need to help others.   I wonder if this comes in part from something they’ve learned from their sibling:  Be yourself.  Don’t bother apologizing or pretending to be something else because it won’t work.   Watching my son and the other kids at Whole Children, I know this much:  they aren’t perfect, but they’re here, with their own set of passions, their own friends, their own stories to tell.  I want to tell those stories because I don’t think we hear enough of them.  Considering this is the largest minority group in America (and the one anybody could join at any time), I don’t think we see nearly enough of them in books, movies, TV shows and popular culture.  They have been sitting in the back of classrooms for far too long now and maybe it’s time for us all to turn around and let them teach us something.

Cammie McGovern was born in Evanston, Illinois, but moved to Los Angeles when she was seven years old. She is the author of three adult novels, THE ART OF SEEING, EYE CONTACT and NEIGHBORHOOD WATCH, as well as one young adult novel,  SAY WHAT YOU WILL. She currently lives in Amherst, MA, with her husband and three sons, the oldest of whom is autistic.