A Pioneer For The Disabled -- For Jack Hoffman, Work Now Is Personal Mission

Jack Hoffman spends as much time as he can these days at his computer. He wants to finish his travel book. The deadline is absolute.

"My agent has this working title - `101-plus Ways to Trouble-Free Travel,' he says, scowling. "Doesn't get your attention, does it? I have a new title I'm trying to talk him into. What do you think: `How to Travel with a Constipated Elephant'? Now that's a title that promises help in overcoming troubles."

His chuckle lingers in a high register, a treble his friends describe as contagious. It's a startling sound coming from such a large man, 6 foot and an inch or two, with shoulders almost as broad as his humor.

Even broader are the images that fill the writing he considers his first vocation. His files include a mystery novel, children's stories and dozens of articles on travel. Some of his colleagues around the world even save the faxes he's sent, post them on bulletin boards and pass them around to friends.

His professional reputation embraces all those qualities and talents.

Until he retired Dec. 1, Hoffman managed The Evergreen Travel Service in Lynnwood, the world's oldest agency that specializes in travel for people with disabilities. With his mother, Betty, he's organized and guided tours for travelers with visual, mobility, hearing and cognitive impairments.

His strength has helped him maneuver wheelchairs up the Great Wall of China and 240 marble steps into a museum in Russia. His humor has broken down bureaucratic barriers that denied his groups access to sites in many nations unused to accommodating people with disabilities. His words have converted new sights into images accessible to people who can't see - commentaries filled with metaphors and similes that translate colors into terms of textures and feelings.

"Evergreen's been leading the travel industry in service to the disabled since 1960," says Michael Quigley, publisher of the Athens, Texas-based Handicapped Travel Newsletter and winner of both the Barbara Jordan Award and the Freedom Foundation's George Washington Medal for his work on disability issues. He's published a number of Hoffman's articles and worked with him on government panels studying the Americans with Disabilities Act.

"The Hoffmans are pioneers," Quigley says. "Jack's a man of intelligence, of great compassion, of humor, of true nobility. Lord, somehow he'll make a joke out of my saying that."

Hoffman's jokes tend toward the ironic these days. And he turns conversations about the avenues he's helped open for people with disabilities to the lessons those people have taught him.

Earlier this year, Hoffman was diagnosed with Amyotrophic Lateral Sclerosis (ALS) - also known as Lou Gehrig's disease - a degenerative disease of the nerve cells that control muscular movement.

The arms with which he's lifted hundreds of people from wheelchairs are bound in braces. With progressively unresponsive fingers, his hands fall heavily to the keyboard as he composes the rough draft of "The Art of Survival," a story about his illness:

"I died on Jan. 16, 1992. I didn't drop onto the floor next to the dog with my hands and feet in the air, but it was just as fatal . . .

"I'd spent over three decades working with the disabled, pioneering wheelchair travel all over the world, overcoming every obstacle put in the way, and it turns out when I was laboring for others, I was really working for myself. I'd become one of the 50 million disabled of North America. . . .

"The question was now what would I do with the rest of my life? . . .

"After the shock passed, I realized all I was doing was pioneering again, only this time it was a personal mission. I reflected on all the others before me and what they'd taught me. . . . "

Hoffman, 59, recently returned from his last Evergreen trip, accompanying 16 others - eight of whom use wheelchairs - to New Zealand and Australia. The tour ranged from the Great Barrier Reef to a partial ascent of Ayers Rock in the outback.

Linda Snyder, a third-grade teacher from Schenectady, N.Y., took the trip to celebrate her 40th birthday. Injured in an auto accident in 1982, she took her first trip using her wheelchair three years ago, with Evergreen, to what was still the Soviet Union.

"Jack's helped me learn not to be afraid," she says. "It takes a special man to care as much as Jack does. I can say that as someone he's personally carried up and down staircases.

"I didn't really travel until after I became disabled. I think about things differently now. Before I wasn't sure what I could do. Just traveling with Jack has helped me understand that I can do everything that everybody else does.

"I'll go anywhere. I can go anywhere. I'm not just a stone figure in a chair."

Mike Michaels, 61, who's used a wheelchair since a spinal cord injury disabled him 15 years ago, was on the trip as well. He and his wife, Lucille, often travel independently. Still, they've chosen to join one of Evergreen's groups nearly every year since 1984.

Hoffman and some of their travel companions become part of a network of the Michaels' close friends; Snyder spent a vacation visiting them in Southern California since after they met on the Soviet Union trip.

"To Jack, everybody's important," Michaels says. "He never talks down to you. He recognizes you as a person."

Hoffman's empathy has grown in contrast to the way he's seen many people approach those with disabilities: with impatience and frustration, patronization, persistent ignorance and thoughtlessness, and well-meaning sympathy.

There's no secret to dealing with disabilities, Hoffman says. "Self-respect and respect for others: once you understand that, all the rest follows - how to think, to reason, to adapt.

"People with disabilities can seem extraordinarily courageous - their willingness to fight, to deal with physical and emotional frustration. But courage really isn't the right word. Nobility of spirit is closer."

As much as he says he's learned from his friends and clients, "we learn from Jack," Lucille Michaels says. "We make adjustments. How does he put it? Change what you can, bypass what you can't."

When the Michaelses were in Paris on their own, Mike wanted to visit the Louvre - "up a flight of 150 steps. So why not? Jack always says, `Don't worry about stairs.'

"I asked the concierge at the hotel to find me a couple of strong guys - hey, I'm 6-foot-4 and 200 pounds. They took the taxi with me to the museum and got me up there. At 5 o'clock they came back and carried me down. It can get pretty funny sometimes."

"Jack always reminds us how to laugh," Snyder says.

"With ALS, the prognosis is rapid decline," Hoffman says. There's fatigue in his voice. Pain makes it hard to sleep through the night. Each morning, he says, his body won't let him bounce back to where he was the day before.

"But according to the textbook, now, 11 months after diagnosis, I should be pretty well dysfunctional," he says. "But here I am, still on my feet. No respirator, lung vacuum, chin strap. Not bad at all.

"And I'm still writing."

In the rough draft of "The Art of Survival," he talks about a woman who took one of his tours, Harriet, "who had suffered major injuries in a car-bus accident. . . . She lost most of one leg, the tip of the other, and (there was) extensive damage in the parts of her brain which controlled speech. Harriet remained just as sharp as ever but couldn't count beyond 10 and frequently knew the word she wanted but could not transfer the thought into her speech center. . . .

"Every time a tour was offered to Africa, Harriet signed up first. She couldn't say lion, cheetah or anything in the cat family, except `kitty.' . . .

"On safari a lion came into the encampment at night and decided to snooze between the sleeping tents and the `facilities.' Harriet thought it uproariously funny when she learned that no one could visit the commodes at night because of the `kitty.'

"I can talk. It's slurred, but I can talk. I think I'll follow Harriet's example: speech is no big deal."

And then there was John, Hoffman writes, "brain-damaged by inhaling paint fumes. Barely old enough to vote, he can't move any part of his body except one thumb, which he turns up for `yes' or down for `no.' . . .

"Yet on a cruise to Alaska he'd be laughing so hard, his head would slip out of the restraining strap. Our concern was him laughing too hard.

"I'll get to the same point in time. I won't be able to move a muscle. But I've decided that laughing too hard will be my greatest problem, too."

Betty Hoffman, Jack's mother, is 85. She still runs Evergreen Travel and leads tours for the blind herself.

A week ago Jack and his wife, Bessie, stopped by the office on the way home from his physical therapy appointment. Betty had a birthday cake and ice cream prepared for him.

He became a little frustrated at the trouble he had cutting the cake.

"Now, Jack," his mother said, "don't get mad at yourself."

When they talk about how the agency's specialty evolved, somehow neither Betty nor Jack uses the word "fate."

In 1960, Betty was managing a travel agency - at the time, the only one between Northgate and Everett - in office space shared with a bank, several attorneys and an insurance agent.

A woman walked in, using a cane, and told Betty she and a friend wanted to book a trip to Hawaii. During the course of the conversation, Betty mentioned that if the woman could find 13 others interested in a tour, the booking for one person in the group would be free.

In two weeks, the woman returned and said she'd assembled a group of 20. A week later, Betty learned that all but the original client used wheelchairs.

The word "accessibility" wasn't in the vocabulary at the time. But Betty was familiar with disability - and possibility. As a younger woman, two strokes had left her blind in one eye and paralyzed. It was anger, she says now, that made her determined to relearn how to walk.

Betty had never led a tour of any kind before, but the trip wouldn't be impossible, she decided.

At the airport, she and a nurse friend, Ruth Van Kronenberg, linked their arms together to form a sling and began to carry their group members, one by one, up the stairs into the plane. The Pan Am pilot and copilot, noticing the procedure out the cockpit window, came out to help.

The first accessible hotel accommodations were arranged suddenly that night at the Sheraton Princess Kaiulani, Jack writes in "The Art of Survival." The hotel manager ordered a crew to widen bathroom doors to accommodate the group's wheelchairs.

"The Hawaiian drivers came back that night with guitars. The group opened their room doors while the men serenaded into the wee hours. The manager said that if any other guests complained he'd move them to other rooms on other floors."

On their return, Betty announced to the agency's owner that she wanted to conduct tours exclusively for people with disabilities. He wouldn't agree. "But his heart was in the right place," Betty recalls. "He sold me the agency for just $500 and wished me luck for what I wanted to do."

Jack, who'd been working at the Fircrest School with people with mental retardation, began to spend more and more time at the agency - and finally joined his mother there full time.

Not many years later, they led the first round-the-world wheelchair tour. "In Afghanistan," Betty says, "we met only one person who spoke a little English. He stared at us for a long time. `We have never seen bicycles built that way before,' he told us."

Hoffman's been accepted into an experimental treatment program at Virginia Mason Hospital, in which a serum proven to slow the degenerative progression of Parkinson's disease will be tested on ALS patients.

"How far I'll have declined by sometime in January, when it's supposed to start, is the question," he says.

"Normally, death occurs about two years after diagnosis of Lou Gehrig's Disease.

"But, honestly, I'm not scared by the idea that I'm going to be gone. It's no big deal. You make adjustments, you don't worry about it - you just get on with it. I like to think there's some nobility in that.

"I've learned that from traveling - and from a lot of people I've traveled with."

The draft of Hoffman's story "The Art of Survival" ends this way:

"I've lived 10 lifetimes all rolled into one. What lies ahead will be a nuisance, but Lou Gehrig said it best: `I'm the luckiest man in the world'."