Sunday, March 3, 2013

The Magic Bus

Pervasive Parenting
By Kodey Toney
The Magic Bus
I’m constantly reading and trying to find new ways to understand the struggles that Konner, and others with disabilities, goes through on a daily basis. As part of the Partners in Policymaking class, I was assigned a couple books to read. One of these was The Short Bus: A Journey Beyond Normal by Jonathan Mooney. I think some of the information in this book hit me in an eye-opening way, and I would like to share some of the high points.
Mooney was labeled as “dyslexic and profoundly learning disabled” as a child. He rode the “short bus” and endured the tag that came along with that. In order to overcome this childhood embarrassment he decided to actually purchase a small bus, remodel it to be a recreational vehicle, and traveled throughout the United States to talk to others who have overcome the label of the attributes that they were given at birth. The stories that came out of this trip are inspiring and eye-opening.
When Mooney encounters a child named Ashley who is hearing and vision impaired he questions the value of her life. He writes:
“Ashley confronted me with my own deep prejudices about what it means to be a valuable human being. I didn’t know if I could truly value a bod that was so damaged. Ashley also challenged some of my ideas about intelligence. If Ashley couldn’t hear, speak, or see, how could she learn? And if Ashley couldn’t learn, was she a fully functioning member of the human race?”
These may seem like harsh judgments, but they are questions that, if I’m being honest, have crossed my mind at times prior to having Konner. They are also questions that I think society as a whole question every day. What is Konner’s worth in society? What is any person with a disability worth? The answer that Mooney learned and everyone should learn is – priceless. Everyone has a place on earth, and everyone has something that they are good at; something that they can contribute. We have to take the time to find it, and exploit it.
Ashley’s mother later explains that “The schools staff expects children to change and is determined to help ‘fix’ them. The sad thing…is that these children are not ‘broken’ and do not need fixing. This is so true. We look at everyone with such a clinical approach. They have a diagnosis, now we know what’s “wrong” with then, let’s fix it. No, we know what attribute makes them the people they are; now let’s work to help them cope with the struggles they have.
An example of this was a person named Cookie who was labeled as “mentally retarded” as a child. Cookie showed some great talents in art. He contributed to society with menial jobs throughout his life, but found out that he had a knack for painting. Mooney allowed him to paint a wall on the inside of his bus. Cookie used his memory of a Goat Island and painted a landscape that was almost spot-on to the actual site. This alone was amazing, but talking with a friend of cookies showed that there was much more going on in his mind. He had names for all the ships in his paintings and knew the names of the captains and most of the shipmates, the exact catch for the day for each, the local gossip about the crew and their families. While it’s uncertain if these are actual people, or part of his imagination, the vision behind this is amazing.
Mooney wrote something that I’ve always felt in my life. I can remember being called out a couple times a week to work in a trailer with the Gifted and Talented program in elementary school. I never thought that I was any different from anyone else, and never fully understood why I was being called “gifted”. I found out later it was because I had scored high on a test. What kind of measure is that? Mooney said, “Our culture often conflates giftedness with academic achievement. But nothing could be farther from the truth. Truly gifted individuals often don’t do well in school at all.” I feel that everyone has a gift of some sort.
Mooney meshes the stories with history of disabilities throughout American history. This lesson of the past is part of what makes this book very interesting. He explains the different diagnosis and how they came to be in society.
When he asked his fiancé if she really wanted to marry him; if she was sure because they might have a child like him, she answered, “I hope to God we have a kid just like you.” I thought this was a great part of the story. I’ve said many times that I wouldn’t want Konner to be any other way. The world would be a better place if there were more people like Konner.
There’s much more to this story, but I would recommend this to any parent who is trying to understand their child’s place in society.
Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

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