On a sunny day in mid-July, Will Halby climbs off a bright red bus on the island of Martha’s Vineyard, Massachusetts, lugging a full-grown man on his back. Halby looks as if he belongs on a California beach riding the waves. Long-haired, tan and lanky, he wears a rolled bandanna around his forehead just above his shades—the perfect surfer dude. My brother, John Casanave, 40, who spends most of his time in a wheelchair, hangs around Halby’s neck, arms clasped, legs dangling, as they make their way across a short stretch of sand.
Halby and the other counselors at Camp Jabberwocky have repeated this routine countless times. They have it down. Forget wheelchairs, which are useless in sand. Never mind that most of these campers have poor balance or can’t stand, or have minimal speech skills or body control. It’s a perfect day. The windsurfing boards are waiting. It’s time for some action!
In minutes, my brother is skimming across the water, whooping into the wind. He can’t stand, but he can hold the sail as it tugs against the breeze. He turns his face to the sun, shrieks as the cold spray hits his legs, and waves as he zips past. A new surfer dude is born.
True, this is no solo adventure. John sits in a plastic chair secured to a wide plank buoyed on both sides by surfboards: a sort of pontoon affair. One counselor handles the front sail, another, the back. It’s a crazy-looking contraption, but it works. Whizzing along full of people and laughter, it’s the perfect expression of the Camp Jabberwocky spirit: Together, we can do anything.
The Martha’s Vineyard Cerebral Palsy Camp known as Camp Jabberwocky, began more than 50 years ago when a young widow vacationing on the Vineyard had an idea. Recently arrived form England with three children after losing her husband to tuberculosis, Helen Lamb, then 38, was a speech therapist at the Cerebral Palsy Training center in nearby Fall River, Massachusetts. “I was sitting on the beach with my children and feeling a little guilty,” recalls Lamb, who is now 91. “I wanted them to be able to get away. But in those days you didn’t take children like this out. It wasn’t done. That’s why I started the camp. I thought it was time the world knew they were around.”
When she pitched the idea to her clinic director, he argued that it would involve too much risk and expense. “We won’t need any money!” Lamb announced, and off she went to raise $145—enough to rent a tiny cottage for a month in the town of Oak Bluffs on the Vineyard.
In July 1953, she arrived by ferry with four campers from the cynic and a 16-year-old assistant. The group made its way on foot the half mile or so to the cottage, those who could walk pushing those in wheelchairs. Says Lamb, “We looked like a gang of refugees.”
The cottage was crowded, but it worked. Lamb brought 16 kids to visit that first summer. They swam in the ocean, did crafts, went horseback riding and rode the town’s carousel. Most were experiencing their first taste of freedom—as were some of their parents. Annie S. Perry of Taunton, Massachusetts, felt nervous about sending her son Larry, then nine, to camp. Larry has severe spastic cerebral palsy. Perry knew camp would be a good experience for him, but they had never spent a night apart. “You don’t think anyone can take care of your child the way you can,” she says. “And here, Helen had five children—some, like Larry, needing help with everything.”
Perry made it through that week, and her son loved camp. She could see it in his eyes, shy says. He hasn’t missed a year since. A “big kid” now at 61, Larry will tell you himself how he feels about Jabberwocky. The best way to talk to him is to watch his left hand. Thumbs up is “yes”; thumbs down is “no.” Ask about camp, and you get a big thumbs up.
In 1954, Lamb moved to an old Quonset hut on property owned by the local 4-H Club. The camp stayed there for 10 years, steadily adding cabins, before moving to its present home in Vineyard Haven on land donated by the Episcopal Parish. Today the camp hosts 30 to 35 campers at each of two month-long summer sessions. Lamb’s daughter Gillian Lamb Butchman, 64, of Potomac, Maryland, runs one session. Her son John Lamb, 60, of Brookline, Massachusetts, runs the others with his wife, Kathleen, whom he met when both were counselors. The camp maintains a ratio of one to four campers per staffer. “One of the keys is that it has remained small,” says Helen Lamb. “That’s part of the magic.”
Deanne Bonnar, 64, of Acton, Massachusetts, was a counselor in the camp’s early days. “It’s hard for people to imagine the attitudes that existed toward the disabled when Jabberwocky started,” says Bonnar, now vice president of the camp’s board of trustees. Bonnar recalls walking down the street during one outing in the 1950s surrounded by campers in wheelchairs, on crutches, and walking with unsteady gait.” A woman came up and said, ‘People like that shouldn’t be allowed on the streets.’ Back then, her attitude wasn’t that rare.”
“Most people thought disabled kids belonged out of sight in institutions,” says Butchman, who began working at camp as a teen. Some people, she says, actually favored killing these children at birth. “My mother’s idea was, if we’re not going to do that, then let’s try to help give them a decent life.”
For more than 50 years, Lamb and her children, followed now by her grandchildren, have devoted much of their lives to Jabberwocky. Like the counselors who return year after year, they earn nothing. Yet they reject the idea that they do this work for noble reasons. “I’m not religious,” says John Lamb. “I don’t believe what I’m doing is going to buy me a ticket anywhere. I’m doing it because it’s fun.” His oldest daughter, Caitlin, agrees. Caitlin first visited camp as an infant. Now 27, she has returned every year since. The first time she looked for a job in the “real world,” she says, she tried to find one that offered the sense of fun, creativity and community she experienced at camp. “I couldn’t’ find it,” she says. “I was shocked. It doesn’t exist.”
“We have just a few weeks together,” says counselor Ema Cushing, 42, of Underhill, Vermont, a special-education teacher who has spent her summers at Jabberwocky for almost two decades. “We want to cram in as much laughing and singing, as much art, dancing and fun as we can.”
That’s not to say being a counselor is easy. “It is hard, hard work,” says John Lamb. “When someone calls about a position, they get the rundown: ‘You’ll be working round the clock with people who need everything done for them, including feeding and help in the bathroom. They may wake up in the night screaming so you may not get much sleep. There’s no time off. Oh, and there’s no pay. Are you still interested?’ If they say yes, I know I’ve got a good one.”
The array of disabilities at Camp Jabberwocky makes about as much sense as the Lewis Carroll poem from which it takes its name: cerebral palsy, Down syndrome, spina bifida, brain injuries—the list goes on. How do counselors avoid being done in by the emotional and physical strain of spending every hour with people facing such challenges? “It’s all about love,” says counselor Kevin Heller, 25, of Pleasanton, California. “Never in my life have I been in a place where there was so much love. It’s the way the world ought to be.”
“For me, camp is an answer to the self-absorbed rat race of Western culture,” says Will Halby, 34, of Venice, California. “It’s a chance to explore untapped resources of love and creativity. We all leave camp with a light in our eyes. We feel like we’ve stumbled on a great secret.”
Most days at Jabberwocky start with music. After breakfast everyone heads to the camp’s large, wood-beamed lodge to work on the season’s musical production. This year it’s The Sound of Music. Leslie Ellen Moore, 40, of Silver Springs, Maryland, is playing Maria. Moore is bent almost horizontal at the waist. When it is time to work on her solo, she grasps her walker, pulls herself up as straight as she can, takes a deep breath and bursts forth, shaky but on key: “The hills are alive with the sound of music. . . . “ Counselor Jennifer Boyce, 25, of Greenville, Mississippi, is beside her encouraging her to stand straighter. Moore lifts her head slightly and keeps singing. When she is finished, everyone cheers.
Later in the morning, campers head off to other activities. Sean Wawrzasaek, 39, of Falls Church, Virginia, sits strapped in his wheelchair in the pottery studio. Wawrzaszek has severe cerebral palsy and can move only his head and eyes. Counselor Ben Cavanaugh, 23, of Alexandria, Virginia, kneels beside him, grasps his foot and asks questions: How about a nose here? And shall we put an eye here? Or here? Cavanaugh understands Wawrzaszek’s eye movements and responds by guiding his toes gently into the wet clay. Together, they create a mask.
Shirley Lewis, 27, of White Plains, New York, sits in her wheelchair in a grove of trees, painting. Her hands, stiff with spastic cerebral palsy, are of limited use. Instead, she wears a brush attached to a blue baseball cap on her head. Leaning forward, she dips the brush into a pot of paint, then pulls back, dipping and swiveling, sweeping swathes of bold color on a canvas set up in front of her. Again and again she takes aim, sometimes missing her target. When her cap falls into her lap, she shrieks with laughter. “Keep that hat on your head, girl!” counselor Ema Cushing teases, coming to her aid.
Graham Gardner, 18, of Greenfield, New Hampshire, loves horseback riding. It takes many people to lift Gardner, who has spastic cerebral palsy, out of his wheelchair and onto a horse named Spirit. Once he is up, counselors support him on either side as Spirit moves slowly and calmly—and Graham Gardner, who can’t lift a spoon to feed himself, is riding a horse.
It’s amazing to go to a place where strangers take such loving care of someone who belongs to you,” says Graham’s father, Steven Gardner, 56, of Salem Massachusetts. Gardner, who is a physician, has been bringing his son to camp and working as camp doctor during their stay for 10 years Each time they return, he feels he’s entering another world. “In most of our society, the ethic seems to be, How do I get ahead? How do I compete better so I can get more than you? At Jabberwocky it’s the reverse. It’s How do I get behind you so you can do better, so you can reach your potential? It’s about compassion instead of competition.”
At Jabberwocky the spotlight is always on the campers. Day in, day out, they are celebrated as individuals with unique gifts. During one weekend talent show, Jeremy Vest, 18, of Gaithersburg, Maryland, who has Williams syndrome, bangs out a solo on his drum set, his arms a blur of motion. Sean Costello, 41, of Nashua, New Hampshire, who has Down syndrome, breaks into a twirling dance. Natural performers, Vest and Costello work the crowd, drawing hoots and whistles—and loving it.
What’s really on stage here—every day, every minute—is courage. And humor. Staffers tell of the time a camper with no arms played a character who was being held at gunpoint by a villain. “Don’t shoot!” he shouted—adding, in a flash of improvisation, “I’m unarmed!” The audience gasped, then roared, relieved to be given permission to look tragedy in the face and laugh.
Helen Lamb herself has a special appreciation for the spirit of feisty resilience celebrated at camp, where she’s fondly known as Hellcat. “She’s compassionate and selfless, but she’s also stubborn and blunt,” says Butchman. “And thank goodness she is. Given the attitudes she faced when she started camp, if she hadn’t been, there probably wouldn’t be a Jabberwocky.”
One of Lamb’s early tussles is now camp lore. After Jabberwocky’s first summer, she contacted the Steamship Authority to request free ferry tickets for campers an counselors traveling to an from camp. She was told no. “I told them I’d come to their office every week until they said yes,” she recalls. “And I did. Every week I would go down to the wharf and try to persuade them.” After about nine months, she says, the man she had been pestering, gave in. “‘Good heavens, woman!’ he said. ‘How many tickets do you want?’ We have had free transportation ever since.” To this day, Hellcat writes a letter each year formally requesting free passage. “The woman at the office has become a great friend of camp,” she says. “She tries to get over every year for the musical production.”
In the early days, Lamb also wrote frequent letters to the Vineyard Gazette, mincing no words about the responsibility she felt everyone shared to help these children and thanking and praising those who supported her efforts: church groups that dropped off casseroles and desserts, businesses that donated bread, farms that provided vegetables and milk, and individuals who supplied cots and mattresses. “The main thing she did,” says Butchman, “was offer people who secretly felt badly for those with disabilities an opportunity to help. People donated everything from doughnuts to turkey dinners, as well as money—often just five or ten dollars.” Today, locals embrace the camp. They wave at Jabberwocky’s bright red bus when they see it on the road, invite campers to sing in church and cheer them when they march in the Fourth of July parade.
Lamb’s first campers came mostly from poor families. “They lived in tenements,” she says. Wanting anyone who could benefit from camp to be able to attend, she charged those campers $10 per week—a policy that remains essentially unchanged. “There are no fixed fees,” says John Lamb. “You pay what you can.” Some families can barely scrape together the minimum. Others make generous donations. Jabberwocky has never accepted government aid. The reason, says Butchman, is simple: autonomy—and the mind-set it fosters. “We are all of us responsible for camp,” says John Lamb. “Counselors and campers, the board of trustees and parents, too—the whole camp community is responsible for its survival and success. It can be hard for others to grasp such dedication. “I don’t think a summer goes by without someone asking, ‘Who is making the money,’” says Hellcat, who visits camp almost daily and often dines with campers. “It makes me so cross. They can’t believe no one gets paid. But I just had a feeling that we could do it this way. I thought, If we can make it a success, it will be an outstanding place. And it is.”
Butchman inherited her mom’s feisty style. A physical therapist, she is constantly encouraging campers to sit up on their own, get out of their wheelchairs if they can, move their legs and walk if they’re able. “Gillian amazes me,” says Ema Cushing. “She’s always challenging all of us to do more, be more, create more.”
A number of people who’ve experienced the camp’s can-do spirit are now helping to spread it. When not at camp, counselor Will Halby works with the Cheshire Project in Los Angeles, which arranges weeklong programs to allow disabled people to pursue special interests. Counselor Jennifer Boyce is raising money to start Camp Looking Glass in Greenville, Mississippi. With the help and inspiration of a number of counselors and campers, a group of mothers of disabled children in Oaxaca, Mexico, have started a Jabberwocky-like camping program there.
It is one of the last nights of camp. As the lights go down for the start of the big end-of-season production of The Sound of Music, the house is packed. Relatives and friends who’ve come to visit campers sit crowded in with friends of camp from around the island. The curtain opens on Leslie Ellen Moore standing in the spotlight dressed as Maria, surrounded by campers and staffers in nuns’ habits. Moore grasps her walker, stands as tall as she can and awaits her cue. When it comes and she begins sing, her voice is sweet and true, cracking only slightly with nervousness: “The hills are alive with the sound of music . . . . “ The spotlight lingers on Moore as she sings her solo verses, then shifts to other campers as they sing theirs. The whole chorus joins in to finish the song. When it ends, the audience erupts into cheering.
And so the evening progresses in a stream of music, dramatic moments, comic mishaps and cheering and clapping. When the performance ends, the cast of more than 60 campers and staffers gathers on stage to a standing ovation. The performers smile into the lights, giddy with success, as waves of applause wash over them.
In this moment the genius of Jabberwocky is clear. Here at camp, people pay attention to you for all the right reasons. They don’t stare because you’re in a wheelchair or because your body jerks uncontrollably. No one cares that you drool or can’t speak clearly or that you make weird sounds. The fact that you can’t dress or feed yourself is merely an inconvenient fact of life.
At Jabberwocky, people stare at you because you’re on stage performing. Or you’re reading a poem before dinner, slowly, even inaudibly, while everyone waits. Or you’re singing and playing your guitar, fervent but tuneless. No matter what you do, there is cheering. Wild applause. You hear your name shouted again and again. You are special you are celebrated. You are a star.