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 http://echo-echosvoice.blogspot.com/2011/10/my-brother-has-downs-syndrome-and-i.html

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
  http://www.amazon.com/Duffy-Barkley-not-Dog-Uhrlin/dp/1452836779

 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

http://www.amazon.com/Duffy-Barkley-Tales-Uhrlin-ebook/dp/B005CQ5Z8E/ref=la_B004458ES2_1_6?ie=UTF8&qid=1354842774&sr=1-6

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.

Writing about Violence When Writing for Young People

 When I was writing my first book, Duffy Barkley is Not a Dog, I had a hard time writing for middle school and high school kids, but dealing with bullies and handicaps and a school shooting.  The darkness was something modern kids live with, but still painful, and even though I knew I was working toward an ending filled with hope and renewal, I struggled with the brutal beginning.  So I tried to rescue Duffy from the immediate agony by throwing in a kinder memory from his younger years.

So, after the school shooting, when his younger sister is taken by ambulance but Duffy is still waiting at the school, I wrote the following scene

Waiting for the school to clear, Duffy had sat on the cement

steps and leaned against the scratchy warmth of the brick wall.

His teacher had glanced back reassuringly several times as he

moved among the students and the parents milling on the curb.

Duffy rarely moved. He sat tensely, with his crutches gripped

tightly and positioned so he would be able to move quickly once

they could finally go. He was holding himself just as tightly and

except for those hiccups he didn't even tremble.

Suddenly a large raven flew down and landed on the blacktop

where the kids played four square. It turned its glossy black eye to

stare straight at Duffy for a moment then it twisted its head to

check the sky before hop, hop hopping to snatch up a piece of a

bagel dropped earlier when the day had still been routine. The

raven and the smaller crows seemed to know which days had

popcorn sales and often only appeared just before lunch on

Friday. Could it still be so early in the day? Duffy turned his head

to watch as another raven dropped in and hopped about, trying to

get closer to the prize.

Ravens, here was something Duffy could think about without

crying or screaming. Here was an ordinary, safe topic which had

nothing to do with Izzy. Duffy wondered where the black birds

went when it wasn't a Friday. Did they come every Friday, even

during the summer?

Suddenly another day with ravens and Skull filled Duffy's

memory; They had been the second grade "big buddies" for a

class of kindergartners. Their class had the job of hiding colored

eggs on the playground for a hunt. As Duffy pulled his walker,

with a dozen bright eggs nestled in the basket always velcroed to

the crossbar, Skull rose up from behind a bush and barked wildly.

He had tripped Duffy. Unbelievably, only one egg had broken.

Duffy left it on the ground and walked resolutely away to scatter

the remaining eggs. The muscles in his back ached from being

clenched as he waited for another attack. A teacher called Skull

over and made him sit alone on the bench. Duffy watched him

out of the corner of his eye. "Odd," he thought, "He looks as

lonely as I am." Then Skull glanced up and met Duffy's gaze. For

a moment Skull looked vulnerable, then his face hardened and he

pounded the palm of one hand with his own fist. Duffy swallowed

hard, and quickly glanced away.

When the eggs were scattered among the bushes and swings,

Duffy's class had lined up to go in and bring out their little

buddies. The teacher suddenly pointed to a raven which had been

waiting for them to leave. It hopped calmly over and gulped down

the bits of broken egg. The class began to go in, figuring the show

was over. Duffy and Skull were among the last in line and both

gasped into startled laughter when the raven next hopped over and

picked up an unbroken egg. It then hopped up with wings

flapping to about two feet above the blacktop before letting the

egg drop. The clever bird then began greedily gulping this second

treat. Their shared laughter felt uncomfortable and Duffy and

Skull glanced at each other, then turned quickly away. Both

hurried after the class and never mentioned the sly bird again.

Duffy blinked and the two birds on the empty playground at

lunchtime grew tired of waiting for the crumb dropping children

who weren't coming. They flew up to a wire, then jumped up and

flew away. Duffy wished he could flyaway with them. He

shivered and turned his head back toward the nervous

adults on the curb.

I still think at times that the creatures out there are smarter than the people they share this world with, but Duffy reminded me that there is always hope.

School Shooting, Bullies, and Violence in Books for School Kids

  I am 48 years old, but I have never been away from books for young people.  As a Mom and a teacher and a writer - but most of all, as someone who loves books, from picture books to Paradise Lost.

    In writing, Duffy Barkley is Not a Dog, I gave myself permission to play around in the world of fantasy and to use some traditional features from the types of Fantasy novels that I enjoyed as a child, but also to use some of the issues that the world is dealing with today.

     One of these issues is the fact that, "School Shooting" is a term which was unheard of when I was a student, but which is sadly a common thing to hear about on the news today.  As a teacher, I have to practice safety drills with students, and along with "earthquake" and "fire" drills, we also practice "Gunman on Campus."  I hate this reality, but my hating it makes it no less prevalent.


    There were guns at my High School, a lot of them, and no one cared.  I grew up in Wyoming, close to Yellowstone Park, and the students who lived out of town, on ranches or farms, carried shotguns and rifles in gun racks in the window of their unlocked pick-up trucks.  The targets were beer bottles, jack Rabbits, magpies, stop signs, coyotes.  There was never any thought that the target might be a student or a teacher.

    We had bullies, we had school fights, we went to school while the Vietnam War was on the news every evening and assigned for current events.  We knew that teenage pregnancy and hard core drugs were issues.  We read books where there was violence and favorite characters died.  And yet, it was more innocent still.

   In Junior High I loved, The Outsiders and, The Chronicles of Narnia, and, Bless the Beasts and the Children, and Johnny Tremain.  In High School I delighted in being terrified by Jaws, and Christine and, Carrie and Flowers in the Attic.

    But rogue sharks, and evil automobiles are a million light years away from the violence in The Hunger Games or City of Glass or the second quartet of Tamora Pierce's "The Circle Opens" books.

    And I have to ask myself, if reading so much violence, and hearing it on the news every day, and being saturated in it, doesn't make these kids vulnerable to being involved in it.  Do they come to see that as inevitable.  Yet here I am, selling my book, with a 9 year old turning his gun on a school assembly.

     I don't believe that violence is inevitable, or that suicide is a good response to being bullied, or that life can not be mostly about life and growth - and yet I wonder what the kids believe, and hope that my book gives them more than just a ray of light in the dark.

     I hope, that like Duffy, with his crutches and his Cerebral Palsy, that they find themselves realizing that they can be the peace and the good in the world, not just in-spite of their weaknesses, but often because of them.

    I know that I became a strong, loving woman, because I was bullied and threatened and ridiculed as a child, and while I do not wish any child to suffer as I did, I hope my books shows them, that there is life after school and a whole world just begging you to let it love you.