In the Shapeup: Why We Need to End the Autism Wars

I've been reading the page proofs for Jim's book, On the Irish Waterfront: The Crusader, the Movie, and the Soul of the Port of New York. It's due out in September of this year from Cornell University Press; it's about the port of New York and New Jersey; about certain "boys of the Irish waterfront"----including Joe Ryan, president of the International Longshoremen's Association, Frank Hague, major of Jersey City from 1917-1947, and William McCormack, a "devoutly Catholic enterpreneur known as the waterfront's 'Mr. Big'"; about the real-life Jesuit, John M. "Peter" Corridan, S.J. who was a crusader against the "rampant mob power" embodied in the likes of those three men, and who was the model for the waterfront priest in the 1954 Academy Award winning movie On the Waterfront, directed by Elia Kazan and written by Budd Schulberg.

The Chelsea piers and the whole West Side of New York, and Jersey City, Hoboken, and Hudson County are the backdrop for Jim's book. They're also places that have been the backdrop for many of us three's adventures since May 2001, when we moved back to New Jersey from St. Louis, Missouri, in search of the best education we could find for Charlie. As I've been reading Jim's manuscript, I keep noting titles and authors of books that I remember him checking out at numerous libraries across New Jersey and New York. Charlie was often with us and spent a certain amount of time walking up and down the steps of university libraries or seeking out sodas in the campus stores and (when he was much younger) chasing squirrels.

On the one hand, there's not much to compare about the Irish waterfront and life on the autismfront. Having just gotten through putting together yet another IEP for Charlie, I have had the thought of "getting sufficient services for Charlie" running through my mind like an over-familiar refrain. I also spoke last week to Charlie's case manager at the Department of Developmental Disabilities, during which I was told that we're still on the waiting list for respite services---if that list is as long as the one for housing for adults with developmental disabilities in New Jersey, it'll be the twelfth of never before Charlie receives either respite or housing. And while we feel very much that our advocating for these services and others connects us with many others, we're also aware that, when push comes to shove, it tends to be everyone---every family---for themselves, for their own.

Getting the services, therapies, schooling that an individual with disabilities needs can feel like being in the shapeup.

The shapeup is the traditional system of hiring longshoremen on the waterfront; in his book, Jim quotes this description of (overwhelmingly Irish) longshoremen gathering at the Chelsea piers on the West Side of New York, hopeful of finding work, from Charles Brinton Barnes's 1915 study The Longshoremen:

Before long several hundred have gathered on the far side of the street from the piers. Just before seven the foreman blows his whistle for them to "shape"; that is, to take their places in a half circle in front of the pier. As far as the space allows, this semi-circular line is always kept, but the number of rows deep the men may stand is limited only by the number seeking work.

A crowd of people gathering together to, when the whistle blows, make their grab for a day's work unloading a ship: This image makes me think of all the parents I've known who, along with us, have been constantly throwing ourselves into the ring to get the placements and programs, services and supports, therapies and treatments, for our kids. I'm not sure how much Charlie will be able to self-advocate on his own for himself when he's an adult, but I know he'll still be one in a long line---in an anxious crowd---seeking housing, a job, staff to support him.

The image for this post is the cover of Jim's books; you can see a bigger version here. The picture is of a crowd of longshoremen and a cop on the right. Everyone is looking in a different direction; it's not clear what they all might be looking at. It's a scene of chaos, with one hatted man wearing an expression that looks like it can only be a snarl. The cop doesn't look like he knows anything more than anyone in the photo (and his baton is just enough in evidence). The hood of a car from the earlier part of the previous century protrudes into the picture---police? some one important, like a boss or Mr. Big type? Are these men waiting in the shapeup?

All that chaos and no one knowing where to look: That's not a bad way to sum up not only us harried parents looking every which way for services and supports, but also what's sometimes called the "autism community." I say "sometimes" because I'm not sure how much of a sense of a community there is. People fall into small and distinct communities about certain issues, about treatments, educational models, causes; about questions of what autism is and whether it can "cured." Often I think we're so busy looking in whatever direction we think most important at the moment that we let our understanding of what binds us together atrophy.

But like those longshoremen who stood in the shapeup, there's something that's drawn us all together in the same place. We tend to spend a lot of time elbowing our way through the crowd to get what we so ardently need. I don't know if, at this time, we're able to stand still for a moment and reflect on what joins us together. If joining and forging connections might ever happen, perhaps we could move past the fractiousness---the so-called "autism wars"---and make a difference together.

And I think it would be something powerful if we could be such a united front.