Petey: A Locked in, Lights Out Kind of Life
Book Review by Nicole Menzel and Barbara Kolucki


Barbara's Part:

My nieces and nephews have given me many wonderful gifts throughout their young lives. Most important has been their time. We don't often do spectacular or expensive things, but instead take hikes and go on "dates", while I listen to the small and big details of their lives. One of their biggest gifts to me is their listening and asking about my life - about the people I meet around the world and especially children from different countries. They take time to be interested in and try to understand how "others" live.

So, as I was leaving for two months in Bangladesh, I was not surprised with the gift of a book "for the road" from my 11 year old niece Nicole. She had recently read it in school and loved it. She brought it home and her mom, my sister, read it as well and both decided it was a "Cioci Barbara" book (cioci is the word for aunt in Polish). I told Nicole that I was taking it on the plane and she warned me "be prepared to cry". I was ready.


One of best children's books ever
Petey, by Ben Mikaelsen, is probably the best book I have ever read about disability - and one of the best children's books I have ever read as well. It is for children from around age 10 and up - and every adult. I want Petey to be adapted to a film or television. I would like it to be required reading for every child in middle or early high school. And it should definitely be mandatory reading in courses on disability, media, the history of social movements and human psychology. Did I miss anyone? I hope not!

Honestly, I did not cry. I have read hundreds of books on disability-related topics and my personal library is near a hundred as well. Most of them are for or about children, and many made me cry. But somehow, everything about Petey was perfect - the writing, the characters, the pace, the evolution in everything from language to events - and I didn't want to change a thing.

Petey is the story of a man born with cerebral palsy in 1920. The doctors declared him an "idiot" and said that any attempt at rehabilitation would be useless. His parents, especially his mother, defied all doctors' advice and tried to keep him home for two years. She cared for him 24/7 until the family could not longer pay the exorbitant medical bills and the other children cried, "Why don't you love us like you do Petey"?


Sights, sounds & smells of institutionalization circa 1920
Petey was institutionalized for the remainder of his life. The story details his daily "care", the physical deformities that get worse and worse - precisely due to lack of rehabilitation. In very honest but child-appropriate language, it involves the reader in Petey's boredom and the sights, sounds and smells of the "insane asylum." Nicole highlighted words like tedium, monotony, despondently, jarring, lye, rank smell, restrain, cavernous, contraption, stupor, morosely, bedlam. Imagine a life that is described by, encompassed by these words. And we overhear the barrage of comments from his caregivers: "Life sure threw you a curve ball. It's a good thing you can't think!" "I concur with the diagnosis of idiot - what did his parents hope for - a diagnosis of imbecile? Either way, his lights are out and treatment's the same." That is - no treatment. Imagine how the person feels who hears these comments again and again.

Well, as was the case for many of the thousands who were institutionalized and for many with cerebral palsy - Petey's lights were not out. He was intelligent, and as we discover, wise beyond his years and certainly in spite of his circumstances. He was also a survivor. He did whatever he could to communicate - and to feel, receive and give love. And at every phase in his life - there were individuals amongst the dozens of caregivers who saw that Petey was perceptive and they touched his mind, soul and body in a way that nurtured him and gave him the strength not only to survive, but thrive.


Making a difference
The book cover says, "...One person can make a difference." But we are never totally sure which one person they are talking about. In Petey's life, he is certainly the one who has made the difference in the lives he touched - especially in the second half of the book with a young boy, Trevor. But throughout Petey's life - there were the attendants Esteban, Joe, Owen and Cassie. There was the one mouse among many at the institution, whom Petey named Patches, who snuggled up to him every night and gave Petey something not only to look forward to, but also comfort and a loving "touch". Patches unknowingly provided physical therapy of sorts as well, in that Petey moved in new ways everyday to ensure that he left some crumbs on his sheet every night for his friend.

And there was Calvin, who was mildly retarded and who bonded and played and sometimes fought with Petey like a brother. It was Calvin who took the time to force Petey to speak - and to understand his language. It was Calvin and the loving attendants who countered the previous comments and gave Petey his humanity. "You're not idiot Petey. You'll still be around years from now when that doctor is belly up to a gravestone". "Petey, you are handsome. Have you ever looked in a mirror?" (No - and he was in his late teens then). "Petey, you are the most remarkable person I've ever met. You've never been selfish or mean, not once. You are brave and wonderful."

And so to the brave and the few, Petey gave innumerable gifts. They all felt that he loved and savored each moment in life with more love and appreciation than they had ever seen in another human. And "his compassion and thoughtfulness defied reason."


Part Two: the 1990s
In Part Two of the book, a young boy called Trevor enters the picture. It is now 1990 and Trevor has just moved to a new town for the umpteenth time with his parents and is not adjusting well to his new school.

De-institutionalization has taken place in the USA and Petey and Calvin have been separated. On his way home from school one day, Trevor notices some boys throwing snowballs at an elderly resident of a nursing home, or, as he first calls it, a loony bin. He instinctively yells at them to stop - and his life changes. Slowly, and without his obvious consent, Trevor comes to know and love Petey. He-and the readers - learn about institutions, unfairness and bureaucracies. He - and the readers - learn about cerebral palsy, spasticity and wheelchairs. And he learns about love, compassion and friendship -his own as well as Petey's. Trevor is in eighth grade and goes out of his way for this one human being more than I have seen possible for most kids this age. Even Trevor himself can't believe he is doing these things.

Petey sees the loneliness, need - and potential in Trevor. From his wheelchair, he watched him walk back and forth to school alone. This "deformed old geezer" accepts Trevor as he is, understands his nervousness at meeting someone like himself, and gently prods him with questions - until Trevor comes up with his own answers to a lot of things about life. Together - they play a trick on the boys who continued to tease and and throw snowballs at Petey - until these boys run away scared to death. I usually do not applaud "tit for tat" in children's or adult media - but this one had me cheering. "Petey", Trevor says, "you're fun."

Petey and Trevor shop, fish, walk, talk and grow together. They experience discrimination and what Trevor's dad says about some people: "Beauty is only skin deep, but ugliness goes all the way to the bone!" But Trevor also learns that "maybe people aren't really mean - it's just that they don't understand." At the end of the book, as Petey lies in the hospital, Trevor adopts him as his Grandfather. And we can feel that Petey's eternal life will surely live on in his "grandson".

So, two people who needed a friend found one in the least expected place - and person. That's how life is sometimes. We think that someone just like ourselves will be a perfect match as a friend. But maybe not. Maybe it is an older person, someone from a different culture, someone who cannot speak or walk or talk - or think in the same way as we do. And if we take that step to reach out to someone who seems different, the gifts we receive can be countless.


Paying tribute to other "Peteys"
I have been blessed by many Peteys in my life. Reading this book made me want to pay tribute to them as well. Many of them I met at the first "institution" I worked in during the early 1970's. There was Tommy Evans, a little boy with hydrocephalus who made you feel like you gave him the world when all you gave him was a ten cent balloon. Or Cathy Usher, a little girl with Down Syndrome who used to spend weekends with me. I would wake up in the middle of the night and see her staring into my face with her little hands on my cheeks and she would say "Barbwa Kowiki, I love you." And there was Peggy Kurisko, who was a lot like Petey. She was mildly retarded from supposed abuse at home and left at the institution. She would tell my family and me: "I am too smart to be here but too stupid to leave."

My work overseas in the last decades has also given me many gifts in the friendships I have been blessed to have with people from many countries, from every walk in life and every culture and religion. I can't tell you how many of my stereotypic attitudes have been dispelled or the gifts I have received from the poorest and wisest woman in a mountain village or a child who has lived with nothing but war.

But my most special gifts - the ones that keep me going through tough days, assignments or lonely times - are my nieces and nephews. Nicole's gift of Petey is one of a zillion she has given me in her young life. And I thank her. You will too when you read this book.


N.B.-

"I would like to also acknowledge Nicole's teacher who recommended this book to her class. It is not the average teacher who does this. I wish she could be cloned!"

Nicole's Part (age 11):
What did you like most about the book?

"What I liked most about Petey was how he learned from the smallest things and understood what they meant so that he could create a word for what he learned and use it daily. That was really smart."

What were some of the new things you learned from this book?
"I learned about cerebral palsy and about people with disabilities like Petey had. I learned that there was nothing nasty or ugly about them. Unless someone tells you about cerebral palsy you don't know why someone like Petey is drooling or moving their body in that way and that can be scary. But Petey showed me that they are beautiful and loving people."

A team that was meant to be
Who were your two favorite characters? Why?

"My two favorite characters would have to be Trevor and Petey. They were like a team that was just meant to be. They both loved each other and could understand each other even when others could not understand them. They were best buddies."

Petey had such a hard life? Why do you think he still turned out the way he did?
"I think he turned out the way he did because he met so many good people in his life and these good people did more for him than all the bad ones. Each of them loved Petey so much and really taught and showed him all the things that he could do. But most of all, they showed him how special he was and that he certainly was not what some called an 'idiot'."

Was there something you learned from Petey that would help you if you met someone like him at school or someplace in your community?
"Yes, there is something that I learned from Petey. It is that people like Petey are not at all stupid, and even with a severe disability, they learn to love, and care about other people. Petey was smart enough to find other ways to communicate with others. If I met someone like Petey in school or in the community, I would now be able to be more compassionate and know how bright they really are."

No one is "too cool" for other people
Petey is not like a lot of books for kids your age? Why would you recommend it to others to read?

"I would recommend the book Petey to others because 1). Many kids my age and older don't even know about these kinds of disabilities and if they read this book, they wouldn't think they were too cool for people like Petey. And 2). A lot of kids and even older people judge other people on how they look and not by what is inside. No one is 'too cool' for other people - Petey was the cool one."

Were there any gifts that Petey gave to you?
"Yes, Petey gave me the gift of love. He really did teach me to love and treat everyone equally. Before I read Petey, I thought the rule, 'treat others the way you want to be treated' was like an O.K. whatever rule. But now I know how much I need to do that and how I can teach others how important people like Petey are and how important that rule really really is."

An eye-opener for everyone in the class
Anything else you want to share, Nicole?

"I would like to admit that I cried at the end when Petey passed away. I thought I was shedding sad tears, but I was wrong. They were happy tears. Not happy tears that he died, but happy tears about how important Petey was and how caring and loving all the people were who chose to love him and take time out of their day to be with him. They taught Petey some things and Petey taught them some things. If I had the chance to meet Petey, I would spend most of my time with him. He knows if you like him or not. If you like him he will feel like the most important person on earth and he will treat you in the same way. Also, it took the tiniest things to make Petey's day special. I liked that.

And - thanks Cioci for giving me the opportunity to be part of writing this article. It is one of my most favorite books and was an eye opener for me and for everyone in my class. It made us all look at things just a little bit differently."

Petey, by Ben Mikaelsen, Hyperion Paperbacks, 1998
Hyperion Books for Children
114 Fifth Avenue
New York, N.Y. 10011