Thursday, December 6, 2012

Why Duffy Has Cerebral Palsy

I was recently asked to explain a little about what led me to choose to have the main character in my "Duffy Barkley" books be a young boy with Cerebral Palsy.  The answer caused some serious looking back over my life and brought me to the following chain of thought.

I was in school in a time before the public mainstreaming law, when kids who were "slow" might be put in the "retard class" sorry, I hate that term but when I was in grade school that is what we all called it. We never even heard another word suggested. These kids were in a separate class and never even came out on the playground for the same recess.  By Jr. High it was common to see them being tripped and called names and to see thing like smoke bombs put in their lockers. Kids who had any more severe problems than a learning disability, never showed up at our school at all, they were put "in an institution" in another county, and never mentioned again.

When I was 12, I wanted to be a marine biologist and a writer and study marine mammals and write about them.

Then we were told that my Mom's ulcer had a heartbeat and that a baby would be here in 4 months.  Everyone was excited, until he was born with Down's syndrome, and that experience opened my eyes and taught me how to really love, and most of all, made me furious at the way handicapped people were labeled and locked away.  I wrote about my brother at

I was in 9th grade when the mainstreaming law suddenly meant that people with more serious handicapping conditions were allowed in our school and suddenly I found out that one of my best friends had a twin brother who was blind since too much oxygen as a premie, and her twin and several other kids our age were suddenly in school with us.  And because her twin walked him with us every day, we became friends too.

my brother and I
 Then my brother was old enough to start school and I volunteered in his class and worked with him in special olympics and got comfortable with the other kids in his class and suddenly my goals were different. I wanted to be a teacher and work with the kids who tended to be overlooked because all anyone saw was the labels.  Of course, I thought I mostly wanted to work with kids with Down's syndrome.  But I was hired by a small, remote county and the class was a preschool Severely handicapped class with every kind of handicapping condition. I had deaf kids, and kids in wheelchairs, emotionally disturbed kids and kids with autism and kids with cerebral palsy and a few really rare syndromes I'd never heard of.  I had not worked with kids with CP much before, just one two week term as a counselor at an Easter Seals Camp in Northern California Mountains.  I hadn't known what CP was, or that it can be caused at any time in your life if you are oxygen deprived. I hadn't known the huge range of severity that the condition covers, from bedridden or wheelchair bound to able to walk and run, from normal intelligence to profoundly impaired. But Soon,  as every class I worked with had some children with cerebral palsy, I began to see them as what they were, not Cerebral Palsy kids, but kids first, Kids with some effects from Cerebral Palsy and a lot of individuality.

I found that the kids in my class that I loved the most, were the defiant, determined ones who argued every time they were told "NO."  But I found I didn't love them or dislike them because of their handicaps, I loved them or disliked them because of their personalities and their choices, just like normal kids. Because they were just another kind of normal.

Sure, the ones who ignored the word "No" were not easy, but they never gave up, and if they were told they couldn't do something, they just tried harder.  In later years, I have found myself a lot less patient with kids who could do anything easily but are too lazy to try.

So I love teaching.  I still do, but I also wanted to be a writer. Fortunately I could do both.  My first book was Duffy Barkley is Not a Dog

 and I wanted to make it a fantasy story to share with my kids, one like Narnia, Oz, Neverland or a Wrinkle in Time, where there was a chance to create another world and use my imagination.

My Brother and my sons
 But I wanted my hero to be someone my sons would love and be able to respect, and yet someone who could teach them love and courage and kindness. So I chose Duffy Barkley, and made him 9 years old, and gave him Cerebral Palsy, and normal intelligence but the need to use leg braces and crutches.  Then I made him bullied and called "Duffy Bark Bark" because he looked like he walked on four legs, and I made horrible things happen so he would have to show his strength.  I love the ending and the way Duffy treats the villain and I love that he learns, what I learned most of all from my brother and my students. That you are not defined or handicapped because of a condition, that you are the only you this world has and the only one with your strengths and gifts.  That maybe, even probably, you might not want to give up your condition to be "normal" if it meant not being you.

So then I wrote this book, and the sequel, set two years later, when Duffy returns to the other world, Uhrlin.  Duffy Barkley: Seek Well

and it has given me a lot of chances to talk to students about bullying, and differences, about never giving up, and about loving who you are.

No comments:

Post a Comment