Sunday, July 01, 2007

The Short Bus: A Journey Beyond Normal

When Ben was younger, I used to read every book I could get my hands on to understand what he was going through. Jonathan Mooney co-wrote a book called Learning Outside the Lines, from which I picked up the notion of "mental health days" that Jonathan's mother gave to him when school got to be too much. I'm sure there's more, but that one stuck.

Jonathan was a victim of Special Ed, labled dyslexic, and had to ride the short bus to school. Here in America, the short bus is synonymous with disabilities,and thus "less than" children. He went on and graduated from Brown University with honors in Creative Writing and Disabilities Studies, and has set out to change the world for his peers.

With candor and wisdom he takes his own recently attained short bus (named "Bob Henry") across the United States in order to meet a mixed bag of others who learn outside the lines. His voice is a mix of observer,academic, and empath.

I don't even know where to begin...I have 20 pages bookmarked for inclusion in this tome. I'll try to cut it down to three people to give your a sense of the book.


Speaking of a trans-gendered man, Cookie,who was taken care of,loved, and accepted by the townspeople, he woes the loss of community in the modern world, where people are strangers to each other, and the strange are not taken care of, but marginalized.

This is in Kennebunkport Maine, where the influx of noveau riche attach a level of comfort to having no "others", and the human we speak of was literally asked to "get out of town".

He quotes Robert Putnam, who feels the loss of community is tragic because :
"an impressive and growing body of research suggest that the civic connection helps make us healthy, wealthy, and wise"...(because we)"become more tolerant, less cynical, and more empathetic to the misfortunes of others"...

In this chapter he also makes a critical observation as to why so many of us are outed.

...After World War II, American society began it's economic shift from an industrial economy to a service economy. This brought an unprecedented rise in the social service economy: more shrinks, medical doctors, social workers, and educators. As John McKnight, a community activist and professor of public policy wrote in his book The Careless Society, this social service economy needs people like Cookie as it's raw material. It needs a sick client (italics mine).


Katie has Downs, and has a Book of Life she created which has pictures of her friends, her work, her school, her family.

When asked by Jonathan, "What is a meaningful life?", she pointed to her book without comment.

"The book of life is just huge, isn't it?" I said to her after she had flipped through most of the pages. She smiled broadly and said, "Yes, it is."

Katie's karma was unbelievably good, and when she suggested things were better if they were done together, especially when jumping on a trampoline, Jonathan realized
"...each of us (used) our weight to throw the other one up higher than we could ever go simply on our own."

There is a thought out there that the human condition shows the faces of God, whose "ways are not our ways". Wouldn't it surprise the shit out of people if God was actually more Downs than any other way?


I've chosen as last the story of a man who refused to be labelled, but Jonathan surmised was autistic. He describes his obsession with his calculator and math; and his attempts to document and streamline efficiently his life.

Before seeing him off,Jeff copied for Jonathan a book of wisdom, which Jeff carried in his backpack everywhere he went. Jonathan confesses he did not read it for months, quite unable as he was to figure out this
...most singular person I had ever met.

In a bizzare coincidence (I'll not divest any more than that...), I have scanned the page from the book to allow you a peek at Jeff's book of wisdom.

Jonathan admitted he has since gone back and read Jeff's book of wisdom 30 or 40 times.

1 comment:

abfh said...

this social service economy needs people like Cookie as it's raw material. It needs a sick client

Yes, there's certainly a lot of that attitude; but you know what, it's really not necessary to keep the social service economy going. If professionals simply recognized that everyone has different needs, without pathologizing them, there still would be plenty of work for people who provided specialized services to enhance people's lives. Disorder labeling is just a marketing tactic to get attention.

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