A TIP OF THE CAP

Designing for Children with AIDS from Design Times, April 1993  ♦ ♦ ♦

Text: Sarah Wright | photography David Foster

Driving onto the grounds of the old Matapan Hospital in Boston is like driving onto the grounds of St. Elsewhere. There is a flat, dry field in front; on the left are two sagging clapboard houses; in the back, on a slight rise, looms the grim, brick, factory-style hospital itself, now known as the Boston Specialty and Rehabilitation hospital.

Not very chic. 

But between the two sagging houses sits a suburban dream: a brand-new, H-shaped ranch house, complete with swings and slides and fresh landscaping all around. This is the newly erected CAP House, home of the children’s AIDS Program, which provides respite care for 12 children infected with the AIDS-causing HIV virus, and day care for up to 20 more. It has large windows with white trim. It looks very chic indeed.

Opened on this site in September 1992, the CAP house was designed and decorated by more than 20 members of the Boston-area design community. Each space in the 10,000 square foot house (including six bedrooms. two bathrooms, a play therapy room, kitchen, dining room, diapering room, and laundry room) bears the design signature of a contributing individual or firm.

Altogether, the designers donated time and materials equal to about $500,000, says designer Charles Spada, who coordinated the CAP designer’s project with designer William Hodgins of Boston. Construction, maintenance, and other costs, amounting to about $1.2 million, were paid for by the city, state, federal, and private funds.

Hodgins and Spada, both known for their lush, high –end, white-on-white decorating styles, have done a similar project four years ago when they organized designers to donate time and materials for The Hospice at Mission Hill, an AIDS hospice in Boston. But the CAP house is not a hospice, and it certainly doesn’t look like one. It doesn’t look like a hospital. It doesn’t even look like a house that might sit near a hospital. It looks like a home in the kind of suburb where kids leave their bikes on the lawn: an all-American white-bread suburb where nobody talks about AIDS.

The children inside don’t look sick, either. They CAP home is for relatively healthy children, newborn to six years old, who are infected with HIV. Referred here by area hospitals or by the state Department of Social Services, CAP children must need only minimal medical care. (there is a day nurse on duty and a night nurse on call), and they must be able to play actively with other kids.

Walking into the CAP house is like walking into, well, a design magazine. To the right of a reception desk is the day care center, designed by Cheryl and Jeffrey Katz of Boston, awash in sun and bright colors. New books, big pillows, and small-scale furniture– what could be finer? At mid morning, the clatter of children getting ready for snacks sounds comforting normal, as if these were ordinary children, albeit upscale place .

Of course, they’re not. Since the program began in 1987, four CAP children have died. But the designer’s goal at the new CAP house was seemingly to divert the children’s attention from their plight. In many rooms, walls and ceilings are painted with starry skies, puffy clouds, flying animals, and hot air balloons. To adult eyes, the feeling they impart is “Anywhere But Here.”

Similarly, CAP architect Julia Smith, of Buck, Smith & McAvoy in Boston, designed the house with a back door because, she says it “felt more homey” that way and because ambulances need to come and go “without upsetting the kids.”

This thoughtfulness on the children’s behalf reveals itself throughout the CAP house. But the effort was heart-wrenching, and some designers admitted they had to focus on matters other than the fate of their little clients to keep them going through the two months it took to design and outfit the interiors.

Freya Surabian, of Surabian Design Associates in Winchester, Massachusetts, used the cartoon movie Who Framed  Roger Rabbit? as a theme for the bedroom she designed. For fun, she created a “Bennie the Cab” chair, complete with a stuffed steering wheel, and had Roger Rabbit himself hand-painted on a wall and a headboard. “It was sad to think this is the last place a child might see.” Serabian admits. Instead, she thought about “beating the Disney bureaucracy.”  which was reluctant to permit her to use  its trademarked cartoons characters.

Richard Eustice, of Atlantic House in Boston, designed a bedroom that evokes a peaceable kingdom of farm and jungle animals. The window curtains have a whimsical creature motif, and a freestanding armoire is painted to resemble a barn, complete with a weathervane and a moon on top, “I designed the walls and furniture to provide texture and variety,” Eustice says. “I hoped they’d hold the interest of a child lying in bed.”

The most elegant bedroom in the CAP house was designed by Celeste Cooper, president of The Cooper Group in Boston. It is a study in soft-spoken chic. Speaking from her car phone somewhere between Boston and New York, the award-winning Cooper said, “Just as the chicest rooms tend to be neutrals. I started with taupe and white. “Three armoires painted as festive pastel beach cabanas would both cheer the children and encourage them to keep the room tidy, she added.

Along with a committee of four other members of the New England chapter of the American Society of Interior Designers, Lisa Bonneville designed the play therapy room. The freestanding and cupboards can display toys and as hiding places. Children coping with a terminal illness need a “safe place to express anger, loss, and fear,” Bonneville says. “High on the playroom wall runs a row of small, pink framed, trompe l’oeil windows. Near the ceiling, painted clouds flutter by. Again, there’s a sweet glimpse of heaven.

The CAP home’s eerie beauty — all its pastel colors and sky imagery — is heightened by the absence of ordinary kid-prints. Thanks to good structural design, it’s as silent as an ashram just a few feet away from the playroom. Thanks to ongoing city, state, and private funding, as well as various health codes, the place is kept scrupulously clean. And thanks to the tragic nature of the HIV infection, no one child gets a long time to leave his kid-prints here.

On the other hand, adult staff members— 24 women and four men — get plenty of time to settle in. The program seems to inspire both love and loyalty in the caretakers. According to CAP director Thelma Hyatt, the program’s turnover rate is much lower than that at other state chronic care facilities. So what are the spaces like for the devoted staff? Where are the tokens of our commitment to them?

A walk through the CAP house as it was designed for adults reveals some of our biases about AIDS and health care. The adult work areas in the house are simply inadequate. While the children’s spaces are innocent and cheerful and bright, staff members get the squeeze. Two staffers are now working in a room originally designed as a janitor’s closet. Others share windowless cubicles — spaces created by scrimping and saving, then laughed off with classic helping- profession sarcasm: “It’s so convenient to have that big plastic bag with a hundred boxes of hospital tissues take up half of the staff lounge,” says one staff member.

Here lurks the ghost of St. Elsewhere, haunting our suburban paradise. These are the same cramped quarters the caretakers had back in the old CAP wing at Boston City Hospital (the CAP home from 1987 until 1992). The truth is, the new CAP home was designed as a showcase for the Flynn administration’s five-year plan, “Rebuilding Boston,” and chic playrooms provide a better show than realistic office space for nurses and social workers. (The underlying political nature of the CAP program was illustrated last summer when Boston Mayor Ray Flynn abruptly changed the house’s name from “Imani House,” based on a Swahili word meaning “faith,” to the “Kirk Scharfenberg House,” in memory of the Boston Globe editor, and Flynn friend, who had just died of cancer. The CAP staff had not been consulted.) The question persists: In the age of AIDS, who take care of the caretakers?

CAP director Thelma Hyatt is pleased with the house and optimistic about the program’s future. “I was reduced to tears when I saw the children’s room at the opening,“ Hyatt recalls. But now she hopes that some of the same energy and creativity that went into making the children’s spaces will be used to improve the lot of the people who must care for AIDS victims.

“We have to teach people to see the parents with HIV-children need a respite, that a vacation from all that strain is a necessity, not a luxury,” she says.

Hyatt herself finds peace in her family and in her religion. “I get overwhelmed at times, like anyone, “ she says. But that’s adulthood; it’s no reason to get discouraged. To anyone interested in working on a project like CAP, she echoed all designers’ advice: “Do it,” they said in one voice. “Do it now.”

 AUTHOR

Sarah Wright is a freelance writer based in Cambridge, Mass. Her magazine articles have appeared in House Beautiful, Vogue, and New England Monthly. The photographer, David Foster, maintains his studio in Boston.

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from Design Times, April 1993 | Nancy Zerbey, Editor | Conrad Warre, Art Director

Louis Postel, President | Sidney Cheresh, Chair