207: Special Ed

Ira Glass

Edward was just a little boy when he was switched from regular classes to special ed. It was kindergarten, and he viewed the move as a big step up.

Ira Glass

Yeah.

Ira Glass

He was Ed. Of course he was going to special ed. And he didn't really figure out what special ed classes really meant for years, until one day in junior high school riding the school bus.

Ira Glass

A lot of kids in junior high school and high school feel different. But to be told no, it's not your imagination, you are different? This moment is something a lot of kids in special ed get to at some point or another: a shocking moment of understanding that they are not the same as other kids and that everybody else knew that long ago. They knew it when they didn't.

Ira Glass

Holly is a high school student in Chicago. She's 18.

Ira Glass

David is also a high school student here in Chicago. He's also 18.

Ira Glass

Today on our program, stories of people who were told that they're different: some who were comfortable with that, some who did not understand it, some who understood it and did not like it. We bring you stories of the developmentally disabled. It is a very different kind of show for us with voices and stories that usually do not make it to the radio.

From WBEZ Chicago, it's This American Life, distributed by Public Radio International. I'm Ira Glass. Our show today in three acts. Act One, Get On The Mic. In which we hear the story of what happens when you hand microphones to developmentally disabled people of various sorts and then send them out with camera crews to interview anyone they want on the streets of America. One thing that turns out to be on the minds of the disabled, same thing that's on your mind and mine, TV.

Act Two, Black Hole Son. In that story we hear from a mother and her son who, at three, became mesmerized with black holes and Stephen Hawking, an obsession which gave way to bunnies and flowers.

Act Three, Walkout. Veronica Chater tells the story of her own brother, Vincent, who one day quit his job at an assisted learning center, and then quit everything else, mystifying everybody in his life. Stay with us.

Ira Glass

Act One, Get On The Mic. Here's a typical moment from the film, How's Your News? The film is a documentary in which five developmentally disabled people travel across America in an RV interviewing people they meet along the way. When they get to Texas, one of the reporters, Sue Harrington, is at a cattle auction talking to an auctioneer, an older guy wearing a cowboy hat. There's all sorts of talk about prices and cows. And then Sue, apropos of absolutely nothing, comes out with this question.

Ira Glass

Now, How's Your News? team has an uncanny knack for bringing the sentimental out of people they meet. Arthur Bradford, who led the How's Your News? team across the country, he first got to know them in 1993 at a camp for disabled adults called Camp Jabberwocky. He was a counselor there teaching a video class. And as part of the class, he would take the campers out to do man-on-the-street interviews.

They did that for a few summers, and then decided that it might be exciting and fun to try to do their interviews on a two-week, cross-country trip, which became this movie. Arthur says that, from the start, it's been interesting to see how people react to the disabled reporters.

Ira Glass

This reporter, Ron Simonsen, asks nearly everybody who he interviews if they've met any famous people, especially if they've met Chad Everett who used to star in Medical Center. Ron is a big Chad Everett fan and wears a homemade Chad Everett sweatshirt through parts of the film. Here's Ron interviewing a woman in Las Vegas.

Ira Glass

There are moments during How's Your News? when things happen that, in another movie, might seem like they're mocking the people on camera. But, in this context, they don't, partially because it's clear how well the filmmakers know the reporters and love them. They were counselors and campers together in the RV. They've known each other for years, taking a road trip.

Two of the reporters, Sean and Bobby, have Down's Syndrome. Larry has a condition called Spastic Cerebral Palsy. The two most talkative reporters, Ron, who has Cerebral Palsy, and Sue, who has a mental disability, came into a studio to talk about the film. They brought along a guitarist, Chad Urmston, one of their counselors, to play some of the songs from the film.

I began by asking Ron what his thing for Chad Everett is all about. It turns out Ron has been a fan ever since he was a kid, back when he was spending a lot of time in and out of hospitals, and Chad Everett was playing a doctor on TV.

Ira Glass

I should say, that interview happens in an alley in, what looks like, the kind of sketchy part of town, and Sue is visibly a little nervous.

Ira Glass

This is a guy, he's sitting on a truck. It's about halfway across the country.

Ira Glass

One of the facts of life for many disabled adults is that they don't get around that much. Many live in group homes. Most of their contact is with other disabled people. They don't go around talking to able-bodied strangers. For most of the How's Your News? team, this was going to be the first time traveling across the country. This was their first time traveling without their families so far from home for so long.

And in the months since the film was finished and shown on television, the whole How's Your News? team has flown to Europe, and Canada, and around the United States when the film has been screened at film festivals. At those screenings, they bring a band. They perform their songs live, on stage, and it pretty much brings the house down. People love them.

In interviews with Sue and Ron, I kept asking them what all of this was like, how their lives had changed. I have to say, every time that I asked those, they were pretty nonchalant about it all, very low-key. Here's Ron, for instance.

Ira Glass

In a separate interview with Arthur, I asked him about their reactions to these kinds of questions.

Ira Glass

Arthur Bradford, with Sue Harrington and Ron Simonsen from How's Your News? The movie aired on Cinemax and at film festivals. You can order your own DVD of the film at howsyournews.com.

Ira Glass

Coming up, yet another three-year-old fan of physicist, Stephen Hawking. And Vinny drops out: assembly line not required. That's in a minute from Chicago Public Radio and Public Radio International when our program continues.

With This American Life, I'm Ira Glass. Each week on our program, of course, we choose some theme, bring you a variety of different kinds of stories on that topic. Today's program, Special Ed, stories of developmentally disabled people. We have arrived at Act Two of our show.

Ira Glass

Act Two: Black Hole Son. Because of a very rare genetic disease, Sam was born with holes in several vital organs, including his heart and his brain. For his first five years, if one wasn't making his life hell, the other was. He's seven now. And recently his mom and he sat down together to talk about how things used to be and how they got much, much better.

Sam's Mother

When I was pregnant with Sam, the first ultrasound came back that there was something wrong. I was thinking just please, let it be something with his body not with his brain. I can handle his body, but I'll be a bad mom to a retarded child. Everybody has their thing they can't take, and that's it for me.

So when Sam was born, when he was five days old, he had heart failure. So then we learned about the deletion in the chromosome, velo-cardio-facial syndrome. So we didn't know if he was going to make it. And we had a talk with the geneticist. And he said if you give him the operations, it's not sure he'll pull through. But if he does, he's going to be retarded, probably. And I said OK. I don't care anymore. I want him, and I need him.

Sam's Mother

He started torturing animals when he was three, and talking all the time about wanting to die. And he stabbed his stepfather with a plastic knife and drew blood, and poured boiling water on me, wiped things on the bus that should not be wiped.

He was kicked out of school when he was four because they said he was a danger to himself and others. And so we took him to a psych unit, and he was studied for a few days. And that's when they told us about the bipolar, rapid-cycling bipolar, which is common in velo-cardio-facial syndrome. It has early-onset, and it hits you hard a lot of the time. And sometimes it doesn't, but it did in him. But nobody told me that.

Sam's Mother

I think the first time Sam heard of a black hole, he was almost four. And we were watching Stephen Hawking, a show. At that time, he couldn't sit down for anything. He couldn't sit down for a 15-minute cartoon. But he was really into space. And this was the only time he sat down and he watched the boring show from start to finish. They had, I think it was like a '50s cartoon of a black hole on just for a second, you know, one of those swirly things. That just captivated him. He started drawing it all the time. In every family portrait, it'd be us and the black hole.

At school, they had this rainbow bear notebook and it would have all the kids' drawings in there. And there would be, like, 19 drawings of kids going sledding, kids going to McDonald's, kids playing with their siblings or something. And then, on Sam's page, it would be a black hole destroying the universe or a black hole coming down the railroad tracks sucking up humans. I was kind of proud of his differentness and his imagination, but, at the same time, I knew that it was like this horror to him.

Before he discovered black holes, it was any swirling thing that sucks you in. Like, even when he was months old, if he saw a ceiling fan, it was the only time he would quiet. He would just stare at that ceiling fan. I know a lot of babies do, but he just was obsessed.

And then, when he was three, he had an imaginary friend, but it wasn't a boy, it was a fan. But this one was called bad, bad fan. And its blades were teeth. And then it had these little, tiny eyes and these little, tiny feet at the bottom, and it would kill people. It would just blow on people and that would kill them because his breath was filled with teeth. And then, sometimes when he broke things, he said bad, bad fan did it. And it was kind of creepy, you know? It was just me and him living in the house. And you start thinking-- oh.

He had to destroy all day long. He had to. He couldn't not. He destroyed his favorite toys. He destroyed my favorite furniture, anything that meant anything, especially.

And I used to watch The Sally Jessy Raphael Shows, or whoever it was that had all those shows about the out-of-control-- I think it was Montel-- had all the shows about the out-of-control, really young children. And the parents had to lock the door against them at night. And they lived in fear. And, supposedly, nobody could help.

And I would always think well, you must be really bad parents. I would never have a problem with controlling my kid. I would teach them how to act. And if I had your kid for a week, he'd shape up. And so, of course, once I became afraid of my child, I didn't tell anyone because I thought they would think the same thing about me. And I kind of thought the same thing about me. You know, he'd be nice and normal, and then just do something so horrible and senseless.

And it seemed like that to Sam too. He could never understand. He'd do something like try to break the cat's leg, something like that. And then, immediately afterwards, he'd be crying and saying, "I don't know why I did that." And he would be just as angry and sad as I was. And he'd say, "I don't understand." And he'd start punching himself and biting himself and putting bruises all over his body. Ugh! Oh, that was a horrible life.

Sam's Mother

He started on a drug called Zyprexa. And within 24 hours we noticed a change. And then, after about 56 hours, it was like night and day. This was not the same kid at all. It's hard to believe that we were all living like we were. I mean, I can't believe it. When I sit here and talk about it, I can't believe that that existed and I didn't try to get a diagnosis earlier. I just kept on thinking I could not be such a bad parent and it would get cured. Or, I don't know what I thought.

But, within two days after starting on the Zyprexa, we would go out. We could go to do three errands in one day. He could wait in line. He was doing well in school. I mean, it didn't happen overnight because he still at some bad memories, but he started to get some nice memories to put on top of the bad ones. And he just got nicer and nicer, and happier and sweeter. He stopped having nightmares. At first, he would ask me when his brain was going to be messed up again, but now he feels like it's his brain, you know? He feels like he's in control of his own brain.

Sam's Mother

When I was doing these interviews with him, I realized something about him that I hadn't seen before, which is all those hearts and bunnies and rainbows that he talks about all the time, it's not because he's silly. It's because he's been through more pain and powerlessness than most people ever will in their whole life. And I think he took all that information about life, about what it is, what it means for him to be alive, and he made an informed decision that he's going to be happy with the good parts of life and he's going to spread them around. And I think he knows something about hearts and bunnies and rainbows. He's not like Forrest Gump, you know? It's not like-- you know, he came out of something very hard, and he has a very strong will.

Ira Glass

The mother who put that story together asked that we not broadcast her and her son's name.

[MUSIC - "KEEP THE SUNNY SIDE" BY THE WHITES]

Ira Glass

Act Three, Walkout. Sun Kim has taught severely autistic children for the past five years. She says autistic kids, in general, tend to not understand social cues, and that her students, because of the severity of their autism, can't tell her their basic needs or thoughts. And so she finds she spends a lot of her work day trying to figure out what it is that they're thinking. And often, she's stumped.

Ira Glass

This question, of course, was part of our story in Act Two. And it's at the heart of this next story. It's at the center of what it means to deal with certain kinds of people with developmental disabilities.

Veronica Chater's younger brother, Vincent, can't do math, even the simplest addition. He doesn't speak well. He has a version of what used to be called mental retardation. But, when he was a baby and doctors tried to diagnose him, they couldn't find anyone else with his particular combination of symptoms, and so they named his own syndrome after him: the Vincent syndrome.

He's an adult now. And for a while seemed to be doing just fine, until a point a few years ago when he surprised everybody in the family by quitting his job, and then quitting everything else in his life. And it was not clear to them why he did it and what it meant and what it would mean for his future. Veronica Chater put together this story.

Veronica Chater

Ever since Vincent quit his job, he spent more and more time alone in his room. At Christmas, at our parent's house in northern California, my brothers and sisters and I weave in and out of the kitchen, talking about work, telling jokes, and taking orders from Mom.

There are 11 of us. I'm the second oldest. Vinnie's the fifth. As usual, he's nowhere to be seen. When I go down the hall, I find him in his bedroom with the door closed, drinking an orange soda from the can and watching an old movie.

[SOUND OF TELEVISION]

His face is close to the TV screen, about 10 inches away. And he has a serious expression, the kind you catch on a detective who's trying to crack a case. He could be 18 and he could be 50, you can't quite tell. He has a short little boy haircut. And, every day, he wears a sweatshirt with the words carpe diem on it. The truth is, he's 34.

Vinnie still lives in his childhood bedroom, which he calls his apartment. Ever since he retired, bit by bit, he's been withdrawing into his own little world, a world that doesn't include me or anyone else.

Veronica Chater

My mom and dad still take care of Vinnie, but it's mainly my mom's job.

Veronica Chater

My parents, who are devout Roman Catholics, were undaunted by the idea of having a, so-called, special needs child. They figured it was part of God's plan. He was an angel in our midst, as my dad always said. They refused to think of him as a burden, even though he would depend on them for the rest of their lives. Every morning, my mom readies him for the day: combing and gelling his hair, brushing his teeth, and shaving him.

Veronica Chater

She tilts his chin this way and that, handling him like a barber with an overbooked schedule.

Veronica Chater

There are all sorts of little games that Vinnie and my mom play together all day long. Most of them are impenetrable to outsiders. He'll say, "Repeat. Repeat." And she'll reply, "Redeep in the redeep." And they'll both giggle.

Veronica Chater

Despite his disability, Vinnie has a really good memory for all sorts of trivia. Quizzing him about movies is the impromptu game my mom and dad play with him throughout the day, from morning till night.

Veronica Chater

The bond between them is more than a bond, it's a union for life. As Vinnie passed through his teenage years and became an adult, Mom saw to it that he was kept busy. She signed him up for bowling, for Special Olympics, and for pretty much every seasonal sport from basketball to badminton.

But as he got older, Vinnie's personality grew darker and more mysterious. I didn't notice it right away. I don't think any of us did. Mom was so good at keeping Vinnie distracted from himself that it didn't seem like a problem. But two years ago, it grew too large to ignore.

Veronica Chater

Every time I go home, it hits me a little bit more that, even though Vincent and I are about the same age, my mom talks to him like he's a precocious four-year-old. And, more and more, I've noticed that he's aware of it too. When he returned without the sour cream and noticed that Mom and I were talking about him, he got upset.

Veronica Chater

It might seem like my mom is rough on Vinnie, but I have to say that her way of dealing with him has pretty much worked out for the best, until the day Vinnie decided to retire. When he quit his job, Vinnie dropped everything including bowling, basketball, and the Special Olympics. Where once he was busy from dawn till dusk, now he had nothing to do, so he began sleeping to pass the time, up to 18 hours a day. It worried all of us, especially Mom. He was sleeping his life away, and we didn't understand why. It felt like we were losing him, like he was giving up, so I set out to figure out why.

If you ask Vinnie about why he quit his job, you don't get much of an answer. In general, it's hard to get a direct response out of him on any subject. "Could be," he'll say, or, "Maybe." It's not clear he even knows what his own feelings are sometimes. Often, when any of us asks him about his job, he'll just change the subject, like he did when I asked him about it, sitting in Mom's kitchen.

Veronica Chater

We've all asked Vinnie dozens of times in dozens of different ways why he quit his job and everything else. And every time his answer is just as cryptic, and so we're all forced to guess what the real reasons are. My mom's best guess is that Vinnie put himself into early retirement and started all these dark moods because of a chemical change in his brain.

Veronica Chater

Vinnie had worked for 12 years at a place called Concord Support Services, a company that hires mentally retarded adults and vocationally trains them. Vinnie always told me that he liked his job. He'd sit in a big warehouse with about 70 other disabled adults doing light assembly or stuffing envelopes. He made up to $60 a month, which, to him, was an infinite amount of money. We all assumed he'd found his place in the world.

Then, gradually, he started to become impatient and angry at work, threatening to break people's fingers if they touched him. He started disappearing into the work bathroom for up to an hour at a time just to get away from people. It was pretty clear that he was in a crisis.

On his last day, he was wandering around looking for a bead he'd dropped. His supervisor asked him what he was doing. One thing led to another. Vinnie lost his temper. My parents were called in for a meeting. And Vinnie quit, just up and walked out.

A few months ago, I asked Vinnie if he'd like to go back to his old job for a visit hoping it might spark something. I wasn't sure how he'd react, but he didn't even hesitate. He told me that he'd love to go. So the next morning, after my mom spiffed him up, we drove the route he'd taken for 12 years. When we arrived at the front doors, he's all smiles. He seems genuinely glad to be there.

Veronica Chater

But, as we approach the warehouse floor where Vinnie used to work, his pace slows. At the warehouse door, he hesitates and purses his lips together.

Veronica Chater

He becomes shy and looks confused as one person after another comes up to him. Some touch him fondly, one man blows in his face, and everyone stares. Vinnie tries to appear cool, but I can tell he's tense.

Veronica Chater

We hang out. And Vinnie looks uncomfortable, except when he decides, on his own, to busy himself cleaning and straightening. After 15 minutes, he disappears into the bathroom, his old hiding place. After a while, he comes out for a few minutes, then goes back in, and then comes back out again. When he heads back into the bathroom for the third time, I know it's time to leave.

Later, I talked to my brother, Danny, about it. Of all my siblings, Danny spends the most time with Vinnie. They go to movies, take walks, go to bookstores. Danny thinks Vinnie might have quit his job for all the normal reasons any of us quit a job. Maybe it had nothing to do with his disability.

Veronica Chater

Vinnie might have simply had enough, enough of other people controlling his life. All the adults in his life were doing the sensible things you do for disabled people: giving structure to his days, coaxing his moods, all with the best intentions. It's possible that, in the end, that wasn't enough of a life. And so, one day, he changed the one thing in his life that he could. He said no to the one thing he could say no to and quit his job, and then quit everything else.

Veronica Chater

After Vinnie retired, my mom and dad were determined to get him back into some kind of routine. After meeting with all sorts of social workers and suggesting dozens of ideas to Vinnie, they finally came up with something that he agreed to. They hired my brother, Bernard, to build a chicken coop in the backyard and to put Vinnie in charge of a miniature chicken farm. My mom had always wanted a chicken farm anyway. This was her big chance to get one.

Vinnie took to every aspect of chicken farming. He was painstakingly mindful of the chicken's daily schedule of free-range feeding and lock-up. And he was especially fastidious about coop hygiene. But more than that, to everyone's surprise, he started participating in activities again. He started basketball practice. And he's training again for the Special Olympics.

Veronica Chater

Pretty much at any time of the day, you can see Vinnie standing as still as a marble sculpture in the backyard beside the coop, his eyes half closed, and his palms cupping the breeze, thinking, or just listening to the sound of his hens. He named them after old friends and talks to them like children.

[CHICKEN CACKLE]

Ira Glass

Veronica Chater lives in Berkeley, California. She has a memoir coming out about her family next spring called, Waiting for the Apocalypse.

[MUSIC - "9 TO 5" BY HAMMOND STATE SCHOOL PERFORMING GROUP]

This cover of 9 to 5 was recorded in 1985. It's the Hammond State School Performing Group in Louisiana. They are developmentally disabled kids in a music therapy program.

Our show today was produced by Jonathan Goldstein and myself with Alex Blumberg, Wendy Dorr and Starlee Kine. Senior Producer is Julie Snyder. Production help from Todd Bachmann and Maria Schell.

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[FUNDING CREDITS]

WBEZ management oversight for our program by Mr. Torey Malatia, who has this message for America.

Ira Glass

I'm Ira Glass. Back next week with more stories of This American Life.

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