Down Syndrome Buddy Walk
October 7, 2007, at Seattle Center
Given the weather and the simple fact that there are far more interesting things to do here today than listen to me, I promise to be terse.
When you become a member of our community, you suddenly find yourself confronted by experts who are full of advice. Well, I'm no expert in the particular topics that affect us; I'm just a dad; I'm a veteran of 26 years in the trenches with my son Ned. Two years ago a book about some of our time together came out. It was a journal of the two years in Ned's life from his high school graduation to his first paying job--which was over that way about a thousand yards, at KCTS. The book was called ADVENTURES IN THE MAINSTREAM, and that's what it was: a series of adventures, big and small.
The biggest adventure was an educational cruise Ned and I took in Britain. With a hundred others, we boarded in London, went down the Thames and then around the British Isles, clockwise, with fascinating stops in various seaside attractions, until we got off at Inverness. The smaller adventures in the book include a brief but illuminating visit to HOOTERS, the restaurant chain where the waitresses are everything and the food is unimportant--which is the nicest thing you can say about the food at HOOTERS. The original purpose of all these adventures was to give Ned an education of sorts through doing, and especially to give him experience functioning in the world, the world outside of special education and all those other programs we also do that are especially tailored to Ned and his friends.
But it was during the adventures, and especially from writing about them, that I realized there was another benefit to all this wandering around, and it's what I want to talk about today.
In the late 1950s, when I was in middle school, then called junior high, I went bowling in Bellevue every Saturday morning. Belle Lanes was crowded on those Saturdays with kids from all over the Eastside, filling up 30 of the 32 lanes. But way down at the end on the last two lanes there was another group, teenagers with disabilities of one kind or another. And over a couple of years sharing the bowling alley with that group, neither I nor any of my friends got to know any of them. They were in another world, or so we thought, a world that was a little daunting to us, way too alien. We weren't unfriendly or teasing or anything like that--we were nice guys, generally--but we never made any effort to get to know them. And when one of that other group occasionally tried to talk to us, we were polite but made no effort to start any kind of friendship, or develop even the slightest sense of who they were and what they were about. They were The Others, and that was that.
And that was the feeling I had--although I never thought about it, and wouldn't have admitted it to myself or anybody else--for the next thirty years. I had nothing against the Others, but I had nothing with them either. And then, one day in September of 1981, Mr. Ned Palmer was born. And two weeks later he was in infant stimulation classes at the Experimental Education Unit at the University of Washington. Some of his fellow infants from that class are still his friends, twenty-six years later, as well as a whole lot of others we met at Hamilton Middle School and Nathan Hale High. And because of Ned, I got to know his friends, not as some mysterious and vaguely discomforting group at the end of the hall, but as people--quite splendid people, who like every other people on earth, have dreams and hopes, disappointments and victories, talents and abilities--people who love and lose and work and play and carry on.
But I had Ned to introduce me to them. Most people out there in the world don't. A few years ago Ned went back to the EEU at the University to work as a volunteer in the same classroom he was in as a toddler, this time working with a mixed group of toddlers, some with disabilities and some without. And one day I was talking to the teacher there and she used a term for the non-disabled kids that I had never heard it before. The new term was ... Typical. "We have the special kids," she said, "and the Typical kids." I love this phrase, because it sounds slightly pejorative--"Oh, your little Johnny is typical? I'm so sorry. Perhaps he'll grow out of it." I'm sure the educational establishment doesn't mean for TYPICAL to sound like the equivalent of MEDIOCRE, but it does and that's their problem. I'm happy to use Typical for all those people out there who don't know what it is to be special. A friend of mine calls them Muggles, if that works better for you.
It's become painfully obvious over the last decade that, somehow, the people we care about, the people we are, have fallen through the cracks where the Typicals, the Muggles, are concerned, at least in the area of political correctness. Political Correctness is usually used negatively, like it's something to belittle--but it can also mean basic respect, sensitivity, compassion. Typicals--from members of Congress to people in television commercials--who wouldn't consider using racial epithets to describe anyone, regularly use terms of abuse regarding intellectual ability--even people who claim to be standard bearers for tolerance and acceptance.
Two quick examples from dozens I could list. Ned and I went to the touring production of HAIRSPRAY at the Fifth Avenue Theater. In one scene, the heroine learns that her high school's black students are so discriminated against that they've all been put in the special education classes, which as she points out means they are in class with people who are the biggest losers in the school, people with no chance to ever be anything else but hopeless, useless outsiders. This in a stage production that calls for respect for black people, fat people, people in drag, teenagers, etc.
The second example is worse. I was watching Comedy Central one night, a concert by a Korean American comedian. His act was built around all the injustice and prejudice he endures as a Korean-American, and in one segment, he says one of the problems Koreans have is that they're mistaken for people with Down Syndrome because of the way they look. He then did a two minute impersonation of a person with Down Syndrome--ostensibly to show how real Koreans are different, and so much better. Perhaps needless to say, this allegedly funny impersonation was appalling and crude. It was the teasing you pray your child will never have to endure. And what made me furious was not the comedian--there are ten thousand lousy comedians working in America today, and a lot of their material is offensive to somebody, because that's the only way they think they can be funny. What made me furious is that Comedy Central ran it. This wasn't a live program: they could easily have edited that segment out, and had the young man come out in blackface and done a Stepinfetchit routine playing a banjo and talking about his Mammy, I guarantee you nobody would have seen it on television. But they just let the Down's bit go, because they thought nobody would complain. At least, when I called their headquarters the next day and finally got some toady on the phone, that's what he said: "We haven't had any complaints." And then, right before I hung up, he started to lecture me on artistic freedom.
Why is this kind of thing happening, and happening regularly? One of the reasons is that our folks, us non-Typicals, are at a disadvantage. We include in our ranks no Eddie Murphys or Thurgood Marshalls, no k. d. langs or Ellen DeGenereses, no Margaret Chos. No city has a Special Ed Pride Parade, no record store carries CDs of Developmentally Disabled music. To speak up for us--to call Comedy Central and complain--we have no famous actors, writers, or artists, no legislators--at least, none who admit it. We have only us, so no wonder people think they can denigrate us and the people we love and "no one will complain."
So the first thing we should do is complain. You hear somebody use one of those offensive terms--and we've all heard them; we all know what they are--or you see a sketch on Saturday Night Live that's built around laughing at somebody with disabilities (and at least on that program, that happens almost weekly, which is why I haven't seen it in years) step to the phone and start dialing, step up to the word processor and start writing letters to producers and network executives and newspaper editors and anybody who has the power to stop it.
But even more than complaining, I can't encourage you enough to have adventures. To get out there in Muggle-land and give people the opportunity to know who you are. That secondary benefit to getting out and about with Ned in the Typical world was not a benefit to Ned, at least not directly. It was a benefit to everybody else. On our cruise we took around Britain, everybody else on the boat was a Typical, a hundred of them or more--almost entirely old, rich, white people. And the overwhelming majority of them had never spent more than five minutes with a person with Down Syndrome in their lives, by circumstance and perhaps by choice. But for eleven days they couldn't get any more than about 400 feet from my son. On the cruise Ned discovered the cocktail hour. Every afternoon at 5:00 he'd eagerly head to the bar and sit on a stool and drink Coca Cola and talk with the people--and the people who originally approached him as strictly a curiosity found themselves in a REAL conversation WITH A REAL PERSON, not one of The Others. I could tell--sitting forty feet away, because Ned wanted to do his bar outreach alone--that for some of those people it was a truly enlightening experience.
On the last day of the cruise, a man named John--who I'd been told owns half the apartment buildings in Savannah and is worth fifty million dollars--came up to me and said, "I've been on a dozen of these cruises; it's what the wife and I do. But the thing I'll always remember about this one is the opportunity to meet your son, to get to know him." And he shook my hand and walked down the gangplank and that was that. The next time somebody in Savannah with a disability walks into his office looking for a job, John's going to be a different person behind the desk than he was before he met Ned. I think he's going to be a person who's willing to take a chance on that applicant, and that's all we ask: Give us a chance.
Some of Ned's adventures have been with his friends, but a lot are in the Typical world--like the community choir he sings with, where for three years now forty-five Typicals have learned that people with Down Syndrome are, first, PEOPLE, who can contribute in their own way to the job at hand.
We get out there, among the Typicals. We don't force ourselves on people; we make it possible for them to come to us, and the good ones do. There are also bad ones, but with them we follow the advice of the movie mogul Harry Cohn. Cohn was once asked what to do about some protesting group, and he said "DON'T EVEN IGNORE 'EM." Somebody wants to be a jerk around Ned and me, we don't even ignore 'em.
Getting out there--giving the Typical world the opportunity to know you, not letting them relegate you to the last two lanes in the bowling alley--is something we can all do, regardless of our various skills. I'm lucky that Ned is as outgoing and well-spoken as he is, but high functionality isn't crucial to this. DOING IT as crucial, and if you need examples, there are a half a million examples all over the place. You probably have one in your house.
I am very fond of cats. Dogs are okay, but cats are special, for two reasons. First, cats are very good at developing and using the skills they have--running, climbing, scratching, clawing, purring. And very good at not worrying about the skills they don't have--barking, digging holes of any size. But more important, a cat has a brain the size of two lima beans. A cat can't read or write, sing or dance, carry on a conversation in any language, do any mathematics or draw a picture of a recognizable anything. But with very little intellect, and limited skills, a cat still comes at you as an equal. A dog, a dog is all over you: "What do you want, master, what can I do, master, love me, walk me, pet me." But not a cat. A cat walks up, says, "Yeah, hi, how are you? I'm a little puckish; why don't you pop a can open? I know I can't do it myself, but big deal, that's why you're here. Open up a can, and if I feel like it, I'll chase a ball around for you. Maybe. But I don't do tricks, and I especially don't do tricks to make people like me."
And for people who don't like cats, don't want to be around cats? Well, Harry Cohn may have said "Don't even ignore 'em," but cats invented the concept a long long time ago.
In conclusion then, be a cat, and start wandering. I think you'll find, as Ned and I have, that there really aren't that many people you don't have to ignore, that the great majority of people out there are decent, and kind, and will be happy, even eager, to have the opportunity to meet you. And I'm happy I got to meet you today. Thanks, and have a great day.