The Short Bus: A Journey Beyond Normal, Jonathan Mooney (365 Books, Day 204)

[rushthatspeaks]

Day before yesterday's review. Via Gallian.

I wanted to like this more than I did. Mooney, having spent most of his childhood and adolescence in various forms of special-ed due to diagnoses including dyslexia and possible ADD, bought a used short school bus of the kind commonly used by special-ed programs and spent a summer driving around the U.S. meeting and interviewing people with various conditions commonly considered disabilities. He originally met most of his contacts through speaking gigs in which he discusses his dyslexia and having gone to Brown; one of the things I liked most about this book is the not-quite-humor with which he states in the first sentence that one of his life goals used to be being an after-school special. Over the course of the summer he proposes to his girlfriend, goes to Burning Man, looks at conceptual art, hits a lot of major and minor cities briefly, travels with various family members and others, and of course talks with a great many people, some with clear-cut diagnoses and some not.

If you know nothing whatsoever about the political issues surrounding disability, disability education, community integration etc., this might not be a terrible place to start, because he meets people from a lot of different communities who have a lot of different things going on, and he gives reasonable summary. He treats other people as human beings, consistently, and he admits when he has trouble doing it, which is more than many writers do, and he doesn't seem to want cookies for it. But-- hm. One of the people he spends some time with is an outsider artist in Maine, who has the label of 'town eccentric' but who also went through school being called retarded, slow, and so on in a way where there were no actual diagnoses involved but a lot of terrible bullying. And one of the things that becomes obvious is that she's a trans woman, which is orthogonal to the various mental health labels but sure as hell had something to do with the bullying. And, well. The author means well. He really does. But this is kind of the epitome of the sort of piece written by a well-meaning person who does not know much about the issues he is writing about, and the main thing I have to say to him about that entire chapter is: use the right fucking pronouns.

So this set of issues concerning the part of the book that involves something I know something about does not inspire me with confidence in the parts of the book that involve things I don't know as much about, you know? I have confidence in everything about his personal life and his issues, that he knows the truth he speaks there, because duh. But the rest of it-- given the format of this, it's inevitably going to be a quick skim over the top of a great many separate sets of things, he's traveling, he's always moving on. But it is so damn important that that skim be as accurately representative as humanly possible, and I just don't have that faith.

He also spends a lot of time talking about how the trip changed him, how much he changed and found himself, but this is a very clear-cut case of telling and not showing, because I didn't see much evidence of it. But that is what you have to say about trips like this, isn't it. I don't know, maybe he did profoundly change, but just didn't manage to communicate it?

Anyway, I might, with those very heavy caveats very clearly explained, hand this to someone as the beginning of a discussion about disability and politics. Assuming I can't find something better. There really has to be something better out there. Doesn't there? Recs accepted.

Comments

[gallian.livejournal.com]

Interesting.

I haven't actually read it myself yet, though I do own it and it's probably next on my list.

Most of what I've read have been interviews with the author or disability rights blog reviews. From all of that, I gather that what he was trying to get across was that disability is meaningless and defining people by disability in school is wrong. (Not saying anything about my opinions on the topic.)

Sounds like he didn't do as good a job at it as he'd hoped. Then again, as you say, is there anything better out there?

[nightengalesknd.livejournal.com]

I read it and have recommended it (for instance, to <lj user="gallian", although it is not without caveats. What I took away was, at the beginning of his trip, he felt that having ADHD or dyslexia was just a different way of being rather than bad bad bad disabilities, but that he didn't know anything about any other disabilities and had the same misconceptions about disability as most non-disabled people. At the end of the book/trip, he had discovered that Down Syndrome, deafblindness, etc are all different ways of being rather than bad bad bad things. It's an important realization to make, and I appreciated the fact that he made it over time, and as you say, without asking for cookies. I'm not sure what is better out there in terms of books. Too Late to Die Young would be my first nomination. Harriet McBryde Johnson grew up being told, by Jerry Lewis on national television that people like her were going to die young. She kept living, and became an attorney, disabilities rights advocate and writer. If you want a taste, google "Unspeakble Conversations" and "The Disability Gulag" which both appeared in the NY Times magazine. In med school and residency, I read more disability related blogs than books, and most of the books that I did tackle were disability-specific rather than pan-disability theory. The three I recall were The Short Bus, It's So Much Work to Be Your Friend, and Disability is Natural. They all have good points and points that make me scream and throw the books across the room. They make beter 101 than nothing, or the MDA telethon, but have major problems. It's So Much Work to Be Your Friend, which addresses the social difficulties of children with learning and behavioral disabilities, focuses almost exclusively on remediating their social deficits rather than addressing the intolerance of the non-disabled kids. It has good practical tips for parents or professionals working with this group of children, but as an adult with social learning deficits, I'm tired of having the non-disabled, who suuposedly have a greater capacity to learn new social behaviors, given a free ride. And Disability is Natural, while correct in that basic premise, takes it to the extreme that people with disabilities should only exist in integrated enviroments, not even having, for example, physical therapy in a segregated setting. A lot of the good, readable disability theory stuff is. . . old. Like, I read it in high school or college, neither of which were yesterday. No Pity is classic but it predates the ADA. Moving Violations is wonderful. Both are more focused on physical disability, which makes sense for the time period, and both are still worth reading, but, yeah. Old.

[seishonagon.livejournal.com]

I've actually read parts of this, and put it down for the exact issues you mention.

Then I actually met the author; he came by my school early this year to speak and talk with teachers. In my opinion, he is an incredibly bright, insightful, compassionate man who is absolutely awful at expressing himself in writing - but it's the least limited form of communication he can manage, and the only way to make an actual living doing the advocacy work he does. He's done amazing things for kids with various diagnoses, and has done an incredible job getting through to teachers from a student's perspective, and is an awesome advocate for students with various disabilities.

When it comes to people with issues and problems that aren't disabilities? His expertise kind of runs out unless you're talking about pedagogical theory that directly impacts classroom instruction and the professional relationship between teacher and student.