Read This Book.

The Short Bus: A Journey Beyond Normal by Jonathan Mooney

I recently read this book and it made quite an impression on me.

In a nutshell, it's a memoir by a guy who, in early childhood, was diagnosed with dyslexia and ADHD, labeled "profoundly learning disabled," and thus landed in special education and a passenger on "short bus." As an adult, in an effort to make peace with his differences, he bought an old short bus and went on a journey around the country, interviewing people with differences - differences that made them social outcasts. In this book, he recounts his journey and profiles the people he met along the way.

I reviewed the book here, but there were so many passages in the book that really struck me, and I found myself highlighting and underlining and dog-earring pages so I could discuss them here. Here are a few:

There were faces of kids who were told every day that they needed to be normal, had to be normal, had to change themselves.

In this comment, the author is referring to a classroom full of kids in a special education class to whom he gave a presentation when he became a public speaker as an adult. I fear that this is basically the crux of what Finn will face over his entire life. That he is viewed as a set of problems and deficits that we should strive, strive, strive to remedy in order to make him as "normal" as possible. Whatever that is. Normal. Pffft.

People say to me all the time about Finn, "You can't even tell he has Downs. He must be very high-functioning," and "Thank goodness he's high-functioning!" I won't even speak to the part where physical appearance has nothing whatsoever to do with capabilities. But really - we have no freaking idea how "high-functioning" he is. And what does "high-functioning" mean, anyway? Doesn't it really, secretly, mean "as close to normal as possible?" Because that's what makes people feel just a little more comfortable with Finn and people like him. And what a kick in the face to individuals who are not "high-functioning." Are their lives of any less value?

The [“short”] bus emerged out of federal legislation, the Individuals with Disabilities Education Act (IDEA) of 1975, which mandated that children with disabilities be educated in a public school setting. It was a historic moment for my tribe, but there were problems. Schools were not required to fully integrate students with disabilities, and a segregated system of special education programs was created. Then along came segregated transportation: the short bus. Thrown together under the rubric of special education, these passengers included kids with physical disabilities, Down syndrome, learning disabilities, autism, as well as emotional problems. Special education and the short bus grouped together all these different students, expanding our culture’s definition of disabled. The short bus as a symbol of special education says as much (or more) about that culture – its values, beliefs, fears, aspirations, and injustices – as it ever did about people with disabilities.

A-freakin'-men.

My parents and I were told I was broken, and that my deficits should be diagnosed, treated, and cured. But the medical model gives the doctor all the power and dehumanizes the “patient.”

Although the author's "issues" were very different from Down syndrome, this still strikes a chord with me. I've always felt to some extent that professionals and lay-people alike have tried to measure Finn and quantify his value as a human being based on how well he can overcome his disability. And is it even really a disability? Down syndrome is a condition present in every cell of his body which manifests in a ways that make him different, and in ways that make him the same as "regular" folks. Why is that even considered a disability? I feel like ever since Finn was born and we were told that he has Down syndrome, we've been encouraged, pushed, expected, to help him, push him to be something that other people can feel okay about.

I realized what 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 are not than what they are – not normal, not whole – a negation that calls into being its opposite: 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.

Something to think about, huh?

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 behavior and train our 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.

I'm still trying to figure out what this so-called normal is. Wait. No, I'm actually not. Because I know that there is no such thing as normal. Take a good look at yourself. Are you normal? How, or how not? What about your parents? Your kids? We all have issues. We all have things about us that are troublesome, things that might make other people uncomfortable. We all have different talents and shortcomings, strengths and weaknesses. Why are we so conditioned as a society to accept nothing less than this mythical normal? Imagine a world in which everyone was the same. Imagine a world with only vanilla ice cream. No chocolate, no chocolate chip, no cookies 'n' cream, and certainly no Chunky Monkey or Brownie Batter. Really? Is that what we want?

A policy of emphasizing speech for these children is really a policy of forces assimilation of a unique minority group.

The author is remarking here on deaf and deaf-blind children who are pushed to undergo rigorous speech therapy in order to teach them how to speak, using their mouths and voices. And although Down syndrome is not the same as deaf or deaf-blind, the reference to "forced assimilation" jumped off the page at me. I think to a large degree, that's what my long-lived and ongoing struggle over therapy boils down to. What's it all about? Is it about helping Finn be the best he can be? Or is it about forcing him to assimilate, to be as much like a normal kid as possible - as high-functioning as possible?

So what did we learn from our short history of the feebleminded? If the social history of mental retardation is a story of shifting realities, one thing has not changed at all: Cognitive minorities are still one of the most socially and economically marginalized groups in the United States.

Uh huh.

[John Langdon] Down had great empathy for the individuals he studied and worked with. He described them in glowing terms as angels, perpetual children, and as almost impossibly kind. While this is better than most descriptions of people with disabilities, there was also a subtle form of dehumanization in this description of people with Down syndrome – it was as if they were in fact a different species.

Yes, and this seems to have endured very much so over the decades. It's something that I personally abhor - this notion that Finn is an extra-special gift, that he's an angel from God, that he was sent to us with some divine purpose or lessons to teach us, that we can always count on him to be happy and good-natured because he's got DOWN SYNDROME for god's sake. It's insulting. He's a person with likes and dislikes, opinions, and moods, just like everyone else. He's not otherwordly. He's got an extra chromosome, that's it. It's utterly scientific and physiological. Assuming he is one-dimensional takes away his humanity. Don't do that to him.

All of this leads to two important points. First, the struggles of individuals with Down syndrome don’t stem from their extra chromosome, but mainly from how they are treated. Don’t get me wrong, individuals with Down syndrome do face specific health challenges . . . . But, from what I have learned, their greater struggle is against discrimination.

The second point is that Down syndrome is far from an aberrant human experience. In fact, it is connected to all of us. At the moment of procreation, every one of us is birthed as a result of a game of genetic roulette. Spin, spin, spin your chromosomes and see what comes up. The genetic process is dependent upon variance and diversity of genetic combinations. One writer has estimated that there are some 65 trillion different genetic combinations. While this variance is a great strength, genetic roulette does create chromosomal abnormalities. Down syndrome is one of the most common “errors” to both occur and survive to term.

Just some of the author's interesting observations about Down syndrome after researching it and spending time on his travels with a young woman with Down syndrome.

This book obviously got me all fired up. It really touched some inner nerves for me, and it made me laugh and cry. It has taken up permanent residence on my bookshelf, along with Roadmap to Holland and Gifts, even though it's not a book specifically about Down syndrome. What I love about this book, though, is that it shows that Down syndrome certainly doesn't have a monopoly on marginalized groups of people.

Please read it. Read it if your family is affected by Down syndrome or any other aberration. Read it even if you're not personally affected by disability or difference - we all owe it to each other to try to understand what it means to be different.