NEWS & EVENTS
Press Releases – 2005
March 27, 2005
JOHNNIE TUITEL, ADVOCATE, AUTHOR, SPEAKER: FORCE OF NATURE
By Terri Finch Hamilton
The Grand Rapids Press
"How many of you guys feel sorry for me?" Johnnie Tuitel asks from his wheelchair, as fifth-graders surround him.
Every kid raises a hand.
"You feel sorry for me because you don't think I can do stuff, do you?" he says.
So he reels them in, the way he reels in audiences all over the country. He tells them about the times he's been skiing and the books he writes and that time he foiled a burglar in his house.
He can do stuff.
Tuitel, 41, founded a charity called Alternatives in Motion that raises money to buy wheelchairs for people who couldn't get them otherwise.
He's co-authored a series of books for young readers about an 11-year-old detective with cerebral palsy who solves mysteries from his wheelchair.
And he holds audiences -- from first-graders to CEOs -- in the palm of his hand as he travels the country speaking about goals, dreams and how it's OK that sometimes he falls off the toilet.
"Even though I'm sitting in this chair, I have fun," Tuitel tells the youngsters in the South Godwin Elementary School library. "My life is good. When you look at me, don't feel sad. Feel glad. "
Tuitel (pronounced "title") makes a living by being inspirational. His calendar is packed with speaking engagements across the country, from elementary schools to sports teams to real estate conventions, where he tells the unvarnished truths of his life.
"I have new walking shoes," he told a recent audience. "They don't work." What you see is what you get, everybody says about Tuitel.
That's true. But what you see can be confusing.
He swears, he cares
On one hand, he swears a lot, has a hot temper and even his 8-year-old can tell you daddy's favorite drink is Tanqueray gin.
On the other hand, he routinely brings audiences to their feet in thunderous ovation, after moving them so quickly from laughter to tears back to laughter again they leave not knowing quite what hit them.
He's generous.
"To a fault," his wife of 15 years, Deb, says with a sigh.
The other day when his power wheelchair broke down and she couldn't fix it, she told him he'd have to use his spare.
Seems he gave it away to a guy in Cleveland at his last speaking engagement. Several times he's passed up his own paychecks to pay his employees.
"His selflessness and generosity are traits I love about him," Deb says. "But I'm also a mom, and I want to provide for my family.
"He follows his heart," she says. "And sometimes it takes a while for his brain to catch up."
He cries a lot, an emotional guy who weeps when he gives a wheelchair away ... and when he tells of his late service dog, Steamer, a loyal golden retriever who died in 2000 after Tuitel had him for 15 years.
"He's a wimp," Deb says affectionately.
"It's a CP thing," Tuitel says in defense, saying he's seen this kind of emotionalism in other people with cerebral palsy.
"CP, my butt," Deb responds. "It's a you thing."
Finishing what he started
He ticks some people off by saying things like ...
"You can call me challenged or handicapped or disabled or shortchanged or crippled," Tuitel says, sitting at the Alternatives in Motion office at Breton Village Mall. He's amused by the wince that last one brings.
"No matter how pretty you shape it, I'm still gonna fall off the toilet," he says. "All those politically correct do-gooders -- it's a bunch of hoo-ha. Because of political correctness, there's a lot of really good jokes I can't tell anymore."
It's the true stories he tells that get you. Like the time he competed in the Reed's Lake Run, a six-mile race in East Grand Rapids. On crutches.
It was 1987 and Tuitel, 23, found out a friend was training for the run. He jokingly said he could finish that race on his crutches. The more he thought about it, the more he wanted to do it.
When his father, Peter, got wind of his plans, he was furious.
"He said, 'You can't do it -- you'll destroy your armpits,' " Tuitel says. "He said, 'It's stupid. And for the first time in your life, I won't be there for you.' "
Tuitel got to the start at 6 a.m., hours before the starting gun. He finished at 12:30 -- hours after the last runner had crossed the finish line.
His armpits were split open. He was bleeding all over Wealthy Street.
At one point, an ambulance pulled up and the paramedic told him he had to stop, and he'd drive him to the hospital.
Tuitel said he wasn't leaving.
"When I got to the finish, I fell down on the ground." His voice catches, and Tuitel has to stop for a minute.
"There was my dad," he says, tears spilling from his eyes. "He said, 'I had to come see you make a fool of yourself.'
He pauses, needing a minute before he can go on.
"You think I would have said something inspirational, something like you'd hear in 'Brian's Song,' " Tuitel says. "But I said, 'Dad, I've really gotta pee.' He picked me up and carried me to the bathroom.
"While my dad was standing there, holding me up so I could pee, he said, 'You're an idiot. But I'm really proud of you. You finished the race.'"
Tuitel wipes the tears from his eyes.
"That's how I was raised," he says.
'First you try it'
"He'd say, 'Mom, I can't do that,' and I'd say 'First you try it,' " says Maria Tuitel, who used to tape her son's feet to his tricycle pedals so he could ride.
His mother's appendix ruptured when he was in the womb. Born at five and a half months, he weighed 1 pound, 4 ounces.
The incubator that held Tuitel during his first few days gave him too much oxygen, flooding his brain with air and damaging the part that would tell his legs to move. He'd never walk or speak, doctors told his parents.
"But my parents let me try anything I wanted to," he says.
He rode horses, swam, learned to ski.
As a teen, he worked for the East Grand Rapids Schools pulling weeds in the school yard and scraping gum from underneath desks, in part to earn money so he could go to a place in Minnesota that taught kids in wheelchairs how to ski. His mom said he could go if he paid for half the trip.
"The neighbors got mad at her," he says with a smile. "They'd call her and say, 'Johnnie's in the school yard on his knees pulling weeds.' She'd say, 'I know -- he's trying to earn some money.'"
Taking risks
Tuitel, a sports fanatic, played Rocket baseball and, as a student at East Grand Rapids High School, managed its football team, taping ankles and dispensing water.
"He went to all the school dances and came home with the most beautiful girls," his mother, Maria, says on the phone from her home in Palm Beach County, Fla.
"He has his days, though," she says, when life gets him down.
"Let's face it -- it's not easy," Maria says. "There's always an ache inside me about it that will never go away. But I never showed it to Johnnie. Not ever."
"I was taught to take risks," Tuitel says.
It was a risk to start Alternatives in Motion, a 10-year-old nonprofit organization that has given away 465 wheelchairs to people in 14 states. It started after Tuitel was turned down for one.
After spinal-cord surgery to give him more flexibility, his doctor told him he'd need a new wheelchair.
He applied to Medicare, Medicaid and his private insurance company. All three turned him down. He already had a wheelchair, they told him. You only get one.
"I'm laying in the hospital bed, just pissed," Tuitel says. "My dad says, 'Son, don't worry -- we'll buy you a new wheelchair.' And I said, 'Dad, that's not the problem. What about the guy in the bed next to me?'
"My dad said, 'Well, I'm not buying him a wheelchair.' "
"I said that's the point, Dad. Who's going to?"
Tuitel called a lawyer friend and told him he wanted to start a charity.
A business relationship
Meanwhile, he was working at a kitchen cabinet shop and speaking occasionally to classes and groups about his disability. In his audience one night was George Ranville, a former Navy intelligence officer who worked in marketing.
"I went up to him after the speech and said, 'You don't know how good you are,' " Ranville says. "He blew me away."
He asked Tuitel what he really wanted out of his life.
"He said he wanted to get off disability, that it was a prison," says Ranville, 49. "He was in tears. I said, 'Then you've got to treat this like a business.'"
The pair forged a friendship and business relationship that now includes Alternatives in Motion, the wheelchair charity; Tap Shoe Productions, Tuitel's speaking business; and the publishing of the Gun Lake Adventure Series books for kids.
The man who can't stand almost always brings audiences to their feet, Ranville says. He recalls a talk three years ago when Tuitel spoke to 4,000 students at Central Michigan University's freshman orientation.
"Here were 4,000 kids, not just standing and cheering at the end, but standing on top of their chairs and cheering," Ranville says. He smiles. "It was something. It was like a rock concert. And Johnnie just sat up there grinning. He has a gift."
While her boss is busy helping everybody else, Liz Spieker's on a mission to help him.
Spieker, program coordinator at Alternatives in Motion, and two of Tuitel's friends are submitting a video application to the television show "Extreme Home Makeover," hoping to win his family a home re-do that will make their two-story home wheelchair accessible.
Spieker pops in the DVD, a touching account of Tuitel's love for his kids but his inability to see the tent they made out of blankets on their beds upstairs, to stroke their foreheads until they fall asleep after a bad dream.
Tuitel stares at the screen, listening, then abruptly rolls away.
"I can't watch it," he says quietly.
"When he's living his life, he can't see the troubles," Spieker says, "but when he sits back and watches it, it gets to him."
At their Grand Rapids Township home on a Sunday afternoon, Tuitel's sons, Nick, 11, P.J., 8 and Joel, 6, tell of their dad pulling them on skateboards, in-line skates and sleds as he motors down the street in his wheelchair at 8 mph.
"During baseball season, when I get home from school, Dad goes out and throws the ball for me so I can hit it," Nick says.
"He's pretty crazy," 6-year-old Joel says of his dad.
First impressions
Tuitel met Deb in 1989 at a church conference in Bowling Green, Ky. She had just graduated from high school, and he was a speaker there.
"He just wheeled right up to me as I was walking on campus," she says. "He told me there was a really good speaker later that afternoon and that I should go -- he'd meet me there."
When she showed up and learned he was the speaker, she wasn't impressed.
"I thought of all the cocky ... he thought he was such hot stuff. Oh, it annoyed me, " Deb recalls.
She figured she'd get back at him during question-and-answer time.
"Can you have sex?" she asked him loudly in front of the crowd.
"Sure," Tuitel responded. "If you ask me nice."
They were married in July 1990, after Tuitel tried to make sure she knew what she was getting into.
"It didn't mean I was just going to have to help him put his shoes on," Deb says. "It meant I'd also have to paint the house and mow the lawn. But I put that all aside, for love's sake. And I'm glad."
And she's tired. Tuitel is often out of town on speaking dates. Their boys are involved in sports and music. She works full time in shipping and receiving at Modern Hardware, unloading delivery trucks.
"It's tremendously hard," Deb, 33, says, as she browns ground beef and simmers rice for supper. "But it's tremendously hard for Johnnie, too."
But you'll never hear him say it.
"The world doesn't owe me anything because I'm in a wheelchair," Tuitel often says.
"It's just the way things are."
'I am who I am'
When he's a jerk -- and he can be -- it's not because he's in a wheelchair, he says.
"I have asshole tendencies," Tuitel admits. "But I think everybody does. It's part of being human. I am who I am, and I'm not ashamed of it."
Back at South Godwin Elementary School, he's telling kids about his life and his books and showing them how his power chair works.
"He's so cool," says 10-year-old Whisper Sherrod, after hearing Tuitel. "I always thought people in wheelchairs felt sort of bad about themselves. He doesn't feel bad about himself. He likes himself just the way he is."
"I like how he said people can do anything," says 10-year-old Bryant Lynch. "That nobody should give up on their hopes."
That's Tuitel's mantra.
"The only reason people fail is because they stop," Tuitel says. He'll say it again, if you're not looking right at him. He's big on eye contact.
"This is a hard thing to do," he says. "It's hard to be motivational all the time."
What does he do about it?
"When no one's watching," Tuitel says, "I scream at the ceiling."
Despite all the places he's been, the things he's accomplished, he knows what people think.
"They look at me, and all they see is the chair," he says. "A wheelchair doesn't define people. It's just the way we get from Point A to Point B.
"That's why people in wheelchairs get in a funk," he says. "When people just see the chair."
His face is cloudy for a minute. Then comes the grin.
"We're all just temporarily able-bodied anyway," Tuitel says cheerfully. "Sooner or later, we all need a wheelchair or a coffin."