Dignity

I read two books recently on the theme of disability and dignity. The first, The Short Bus: A Journey Beyond Normal by Jonathan Mooney was a bit of a disappointment, to be honest. The premise sounded so good - one guy travels around in a short bus to explore what it means to be disabled

:"I realised whtat the short bus is all about: It serves a social function. Our myth of who we are, who we should be, is actually created by categorizing people with disabilities. Disability is inherently a negation. In our culture, people with disabilities stand more for what they arenot than what they are-not normal, not whole-a negation that calls into being its oppostie: the normal. The normal looms over all of our lives, an impossible goal that we are told is possible if: if we sit still, if we buy certain consumer goods, if we exercise, if we fix our teeth, if we... The short bus polices that terrain; it patrols a fabricated social boundary demarcating what is healthy and sick, acceptable and broken, enforcing normalcy in all of us. What had I lost in trying to belong to the other side?"

The thing is that reading the book makes it feel like he managed to drive around a great deal of the country without doing much or meeting up with very many people. I expected so much more than I got.

Interestingly, what this book most inspired in me was the desire to read yet another book, Enforcing Normalcy by Lennard David, who states that the word normal did not even enter the English language until 1860. This is how Mooney summarizes the book and his response to it:

"Before then we only had the concept of the ideal, which no one could ever hope to obtain. In the United STates, normal arose within a cultural context as the nation sought to control a growing urban population and Americanize immigrants from aroudn the world. Normalcy, though,is first and foremost an idea that arises from statistics. The normal, norm, or normalcy do not exist in the real world of people, despite the fact that we are told that we can modify our behaviour and train out bodies and minds to reach it. WE are told to chase it-in our culture, in our families, in our lives. But when we chase it-as I did-it disappears. Normalcy is like a horizon that keeps receding as you approach it."

The book also inspired a deep desire to go see "The Lightning Field" by Walter De Maria in Quemado, New Mexico.

Mooney's most interesting portrait was of Kent, his old university roommate - possibly because he knew him the best of all his subjects. He says of Kent, "I arrived exactly on time-which meant absolutely nothing to Kent-so I don't know why it meant anything to me. Arriving on time is one of those ideas that matters only because we all collectively believe it matters," and I must say, if only we could do away with pesky on-time thinking! He uses Kent to talk about the limits to the medical model of disability - and discusses Dr. Russel Barkley who Mooney quoted as saying that, "there is no ADHD when the student plays Nintendo... In a New York Times article Barkley implied that the set of traits definded as ADHD officially become ADHD when these traits begin to cause signficant problems in the person's life...What is clear, however, is that the type of environment he was in played a signficant role in Kent's success or failure." It made for an interesting association in my rereading of the Little House on the Prarie books (I'm only three in so far). Mooney talks about how unreasonable it is to expect little kids to sit quietly in a school for such long periods of time and it occurred to me when reading Farmer Boy that while people now may act like schooling as it is today has always been like this, there are numerous occassions where it becomes obvious that children not so long ago did not even come close to attending school on a regular basis. Little Almanzo goes to school for the first time when he is nine years old and misses it for any number of reasons - to break young oxen, on his birthday to go sledding, to haul logs and help with the harvest. School apparently only opened in January to begin with, and once it does open Almanzo spends a lot of time trying to get out of going by helping with just about any chore he can think of.

Mooney's book was about a quest for transformation:

"A place that would change me-that's what I wanted. That was worth seeking. I had been hoping to be transformed by riding this bus; I wanted to shed my old self and come out on the other end new. Waht better place than Burning Man to burn away the past and build a future? We all have those places that we think will make us better, places we believe will change us. Burning Man was that place for me. Or so I believed."

One of the main reasons I love reading is that it can be transformative, just as sometimes places can be. Certainly, you can't run away from your problems - as they say, you take them with you. That isn't to say that moving to a new place can't transform you though - I think if you move any distance, across cultures particularly, you can't help but be transformed. The problem lies in what that change is and what you expected it to be. By the end of the book, I couldn't really figure out if Mooney got that transformation he was looking for or not. And certainly, I didn't get the one I was looking for in reading his book.

The second book I read was Six Degrees of Dignity:Disability in an Age of Freedom by David W. Shannon. After Short Bus it was a refreshing change - there was so much more meat to it, so much more reflection on disability and the need of society to adjust its thinking and attitudes towards the disabled. His book is divided into dignity in 6 arenas - public perception, the community, law, public policy, self, and future. I really enjoyed it, though it was a bit legalistic for me. Shannon is a lawyer who travelled across Canada in his wheelchair - sadly for me, the lover of travel writing, he only mentioned the trip briefly. I learned a great deal from this book, including the interesting fact that women and members of Canada's Aboriginal population are more likely to experience disability.