St. Patrick’s Day Butch Cassidy and the Barretstown Kids

By Pol O Conghaile

"Where are you going?" The taxi driver inquired.

"Barretstown," I said. "Oh yeah? That’s the Paul Newman place, isn’t it? The camp for sick kids?"

"That’s right," I replied, worried by a hint of sarcasm in his voice. "Are you cynical about that?"

"No, no I’m not," he assured me. "No, the way I see it is like this: What can Paul Newman do for the kids in Barretstown? A hell of a lot. And what can the kids in Barretstown do for Paul Newman? Nothing . . . "

If I had nodded in vague agreement then, I can only wonder now at the sheer difference a day makes. True, Newman has starred in 61 films and been nominated for the Best Actor Oscar no fewer than eight times (he won once, for the "Color of Money," in 1986). True, his instantly recognizable features beam out at you from a million bottles of spaghetti sauce. ("The embarrassing thing," he told one interviewer, "is that the salad dressing is outgrossing my films.") True, he is as hard boiled a 20th century icon as they come. Truest of all, however, is that the kids at this camp, tucked away in the heart of County Kildare, have given Paul Newman something he genuinely cherishes.

Relaxing outside the front door of a spectacular Barretstown Castle, he discards a blue blazer and accepts a cup of coffee, turning occasionally throughout the interview to wonder at a murder of October crows.

"All that they had shown me was a picture of the house, which didn’t interest me . . . " he mused, pausing for recall. "My memory is that a person by the name of Joe Woods notified me about it, and I came over here really just as a courtesy when I was in London. But when I got here and saw all the stables and everything . . . I thought, My Lord, what a medieval bazaar for young kids."

Little time was wasted. In 1994 Newman kick-started the Barretstown Gang Camp with a $2 million donation from the profits of Newman’s Own — the food company he runs to benefit a wide variety of educational and charitable organizations worldwide. The first European center for The Hole in the Wall Gang, a network of camps drawing their name from Butch Cassidy and the Sundance Kid, Barretstown was conceived to host summer outings for children aged 7 to 16, all of whom have been diagnosed with life-threatening illnesses.

The idea was clearly an inspired one, but Newman is reticent when asked from where it came, preferring to focus on the children themselves. He just woke up one morning, he said, "struck with the idea that some people have bad luck and a whole life to correct it, and some people have bad luck and no chance to resurrect themselves. That’s just the luck of the draw and that’s particularly poignant."

The result, in the words of Barretstown CEO David Strahan, is a camp where children who suffer from a wide range of illnesses — primarily cancer and serious blood diseases, including hemophilia, diabetes, pediatric HIV and cystic fibrosis — are "supported very naturally." There is no imposition. There is no smothering with kindness. "In their 10 days they learn to do things with other kids who have the same problems. And then they leave here, going back to the classroom with ordinary kids, able to do things that they never would have thought possible."

"It is about providing a camp experience for people who, by and large, would not be allowed into a camp," Newman said. "It was just so they could come and raise hell with kids like themselves in a non-hospital way."

Barretstown is alive with anecdotes, but somehow, when one passes from Newman’s lips, you listen all the more closely. Trying to keep your eyes off him is like pulling nails from a wall — at times he pulls forward in his chair, animated by the spark of a memory, a moment that has made all the difference. At others he fixes you with cold, piercing eyes, sizing you up, as if wondering what it is you’re really after. Each story, however, quietly pulls you from those eyes, away from fame and celebrity, into the myriad lives that the Hole in the Wall Gang has transformed.

"When we were opening the first camp in Ashford, Connecticut, we were 60 percent full and I stood out on the driveway and thought, Holy Christ, what have I done here? But there was a mother and a father and a young child walking down the driveway and this little girl was holding onto her mother’s skirt. I said, ‘Yes?’ And they said, ‘Is this the Hole in the Wall Gang camp? We were just driving back from Boston, we live in New Jersey, and we read an article in the paper that said you were having a camp here.’ I said, ‘Yes?’ They said, ‘Well can we look around?’ I said ‘Sure . . . you can go into the office and talk to the counselors.’ Well, they drove back to New Jersey that night, packed up the kid’s case and brought her back. And the fourth day I was there, I saw that kid and she was draped around this counselor’s neck like a fox fur, loose as a goose and laughing and just having a dynamite time."Focus on trust

"We don’t work on the assumption of death at all," said Communications Officer Steven Goldsmith (of the 1,100 children, who visited the camp in 1999, only three had terminal illnesses). For him, the ideal metaphor for Barretstown is the adventure course. A focus on trust, teamwork and the fact that, with a little care, disability can be turned into a positive advantage demonstrates that, married to the fun, is "a very specific concept of therapeutic recreation. So much of their life is spent waiting, be it in hospitals, for treatment or whatever. The kids not only have their own illnesses, but they know a lot about sickness too and, well . . . sometimes they get blue."

As soon as they’re diagnosed, he says, the kids "start getting old." In perpetual contact with adults, with hospital wards and oncologists, deprived of the "normality" the rest of us take so much for granted, seriously ill children grow up fast. Fluent in a baffling array of medical terminologies, at home in sterile and depressing environments, they take on responsibilities beyond their years, (and oftentimes, so do their siblings). This "bad luck", which so fascinates Paul Newman, steals childhood from those who need it most — children.

Of course, it’s difficult to get a thorough feel for Barretstown in their absence. Beautiful and all as the estate is, without the children something is missing — not so much a piece of the puzzle perhaps, as the picture you need in front of you to assemble it. A good place to put your imagination to work here, to get a sense of the vibrancy that exists when activities are in full swing, Newman told me, is the Medical Center.

"The hospital looks like a very friendly place where you’d bring your dog," he said.

He’s right. Rupert the Bear and Winnie the Pooh are tossed on a couch. There are more colors than you’d find in a pack of Wine Gums and that unsettling, sterile hospital smell is thankfully lacking. Kid-friendly to the core, Barretstown Medical Center lies at the heart of the "unobtrusive" medical supervision so central to the camp’s success. In fact, so central is it to the ethos, many of the children won’t visit at all.

"We take the medication to them the whole time they’re here, so they never have to say, ‘Oh I’m due something, I have to go now," said Lindsay Richardson, medical coordinator at Barretstown since its inception. "Having worked in a hospital where children have cancer, you know specifically what a lot of them have gone through. A lot of them have been practically on death’s door. And suddenly to come down here and see that child running around, in a canoe, fishing, on a horse, doing things like that . . . it’s very rewarding. A lot of the children as well, coming from Europe, don’t realize that children in other parts of the world can have cancer. So they meet somebody else from another country and go, "Oh you’ve got the same thing as I have!’"

Committed staff

Despite having raised £12.5 million since 1994, Barretstown, because "nobody ever pays to come here," needs £2 million a year to maintain these high standards of care. Newman himself was aware from the outset that the camp couldn’t depend on him financially, wishing instead for it to become self-sufficient and survive long after he was gone. That hasn’t been easy, however. According to a recent report commissioned by Barretstown, just 17 percent of the Irish population are aware that the camp even exists.

Because money is wanting, many of the staff who care hands on for the kids are volunteers. Called cara, taken from the Irish word for "friend," Newman smilingly wonders "whether they know what they’re volunteering for until they get into it." But typically, he refuses to discuss what it takes to be a cara.

"You’d really have to ask them," he said. "That’s a very personal thing for all of them."

Well, for starters you need to be up for a 16-hour day. After that, according to Ed Drea, a unit leader from Carlow, "you need bounds of energy, you need to be enthusiastic about the work, and you need patience. The big thing is to have an understanding of the fact that you’ve got so many kids and volunteers from different countries coming in with different approaches to childcare. You need to be very flexible."

"It’s like a vocation at the end of the day," said Kathleen Gallagher, an activity coordinator from Donegal. "You have no life, basically, for the time that you’re here. You come down in June and you’re here until Sept. 10 maybe, with two or three days off between the sessions . . . You have to be motivated, energetic and enthusiastic."

Despite the fact that they’re knackered, magic is the word that crops up most often in their conversation. "When they come here they may be wearing a bandanna because they’ve been going through chemotherapy or whatever, and they’d be very self-conscious," Gallagher said. "But within a few days, after seeing the other children, they’d start to lose their inhibitions, and off come the bandannas, and off come the prosthetic limbs, you know! When you see that happening . . . that’s where you get your energy."

"Saying goodbye is a thing you never get used to," added Tommy Lavelle, a cara from Sligo. "We did it what, six, seven times this summer, and each time was different. There’ll always be one or two kids that you really connect with, and to watch them going off knowing that you may never see them again . . . it’s strange every time."

"The staff and the people who work here get just as much back as they give," Newman said enthusiastically. "That’s the reciprocity of it. I saw this one kid the first year — well, I guess he must have been about a fresher in college. I said, ‘How are you doing?’ It was like the second week and he said, ‘Well it really is exhausting. And then to go to bed and just barely get to sleep and have some sick kid crawl into bed with you and need comfort and care — it’s devastating.’ I saw him about four weeks later and asked him how he was doing. He said, ‘It’s easy now. What I do is I go to bed and stack ’em all on top of me and get a terrific night’s sleep!’ "

His excitement is infectious. You’d think at this stage, given the extent of his achievements, that all he’d want to do is sit back with his treasured six-pack of Budweiser, and bask in it all. Fat chance . . . 217 million bottles of salad dressing later, an estimated 2,800 projects have benefited from Newman’s Own — to the overall tune of $100 million. Still, despite the fact that he’s been there and done that, despite the fact that he is now 75 (aging gracefully, but aging nonetheless), despite the fact that he is thinking of throwing a party to burn his tuxedo because he doesn’t "have to do that kind of thing anymore," he can conjure up the enthusiasm of a 10-year-old.

"It takes about four hours," he said. "It takes about four hours for them to realize that this is a place where they are not different, where everybody is the same as they are, where they have the same interests, the same problems, the same things to talk about, the same fears and secrets. Is four hours too much? Two hours! My God, I’m talking like I’m at church or something! I guess there are exceptions, but if you would interview every family that left this land they would probably say that it’s the best two weeks their child has had."

Eoin’s story

Barretstown kindly agreed to put me in touch with one such family.

"The camping this year was my favorite," said Eoin, 15, who asked for his name to be changed. "We took tents and we went up to Bishop’s Hill. Did you see the canoeing lake? Well it’s way up past that and you can see the Wicklow Mountains everywhere from there. You spend the night there, light a fire and put up your tent. I wasn’t going to stay the night, but in the end I did. . . . We stayed up until about half two."

Eoin’s parents heard about Barretstown through their son’s illness. Having undergone a bone marrow transplant, his consultant suggested he spend some time there to recuperate.

"He was a bit iffy," Eoin’s mother said, "because he wasn’t very strong after the transplant. . . . He hadn’t got much strength and he was on a lot of medication. Things that normal children could do, like dressing themselves, he couldn’t do."

Eventually, following a letter of invitation from Barretstown and encouragement from a local social worker, he decided to give it a try.

"We drove down and went in behind these big electronic gates and up the driveway . . . I was very worried the first year because I thought he’d never stick it. But he did," his mother said.

"It’s hard to decide at first because you don’t know what it’s going to be like," Eoin said. "It’s the same as going any new place. I thought it was an adventure camp for sick children and they’d all be really sick down there. But it’s just like a normal camp — you don’t talk about your illness or nothing. It’s not that you don’t have to or you’re made not to, but you just don’t think about it."

Parents are advised not to contact their kids directly, it transpires.

"It’s an awful breaking point in the sense that you’ve been with this child all the time and then suddenly, you’re wondering how he’s doing," his mother said. "Between my husband and myself, we would have been continually with this child, but they need to get back their independence and be able to do things for themselves. This is why they advise this, I think, and it also gives the parents a bit of a break. It was tough the first year . . . "

Said Eoin: "But the second time was grand because you knew everyone and you knew what was going on. The first year I was really tired for about five days after. The second year I wasn’t as tired, I was just missing everybody. Your friends down in Barretstown are different from your friends, let’s say in primary school. It’s a change, it’s really good."

Barretstown, most of all, is about connections. As you speak with more and more people, more and more of these peel away — emotional connections between kids and caras, respect between caras and the corporate, business connections between the corporate and the community. Despite the gushing, sometimes cheesy applause that surrounds the camp, discovering hidden examples of these is a deeply refreshing thing. Eoin, for example, one of 2,500 Barretstown kids from 18 European countries to date, found the theater "really cool." Paul Newman, the actor and corporate face of The Hole in the Wall Gang, calls it "one of the most important things. To bring the kids together, to experiment, to be embarrassed, to be uncertain, to struggle with all that to get to a certain goal, theater’s a wonderful way to break."

Does Newman feel privileged to be a part of this? Does he feel proud that his efforts have turned a family’s "shattering" experience into such enthusiasm?

"I’m puzzled by the word ‘privileged,’ " he said. "I’m puzzled because I just think a normal human instinct, if you yourself are privileged, is to hold out your hand to people who are less privileged than you are in one way or another."

Is it a duty? "No, it’s an instinct," he said. Again that piercing stare and that awkward silence, rendering him in full control of the conversation. I felt uncomfortable; once more overtly conscious of whom I was talking too, aware that he was due a snooze, aware that he didn’t have to talk if he didn’t want to. What is the one memory you have, I wondered, tossing a final question his way, that would sum up the experience of Barretstown for someone who has never been there?

He paused for a moment, before leaning forward, clapping his hands with a spark of enthusiasm.

"There was one kid who was not very strong, and not very confident — not very anything, in fact," he said, his face brightening once more. "He was fragile enough to have to go around in a golf cart. So after three or four days the counselor said, ‘If you go really slowly, you can drive the golf cart.’ So the kid drove the golf cart, and the counselor would get him to go to the administration office or the arts and crafts, and pick up things. . . . And one time when he was driving from there to the mess hall — this shy, thin, well actually facially deformed young man — it just so happened that Joanne [Woodward, the actress and Newman’s wife] was walking on her way to the mess hall. Well, he drove up alongside her and said, "Hey babe, get in the car!"

"And she did!" He grinned. "Joanne told me this story, that’s why it was really so funny. . . . But for a kid who came into camp and wouldn’t speak and wouldn’t look anyone in the eye when he spoke to them . . . and this is four days later."

I don’t doubt that taxi driver’s contention that Paul Newman can do "a lot" for the kids in Barretstown. But if the kids of Barretstown have done "nothing" in return for Paul Newman, well, then I guess "nothing" has turned out to be a real cool hand.

(If you’re interested in making a donation to Barretstown, call Luke O’Toole on 353-45-864115, or write to Barretstown Gang Camp, Barretstown Castle, Ballymore Eustace, Co. Kildare, Ireland.)