Amelia Rachel Hokule’a Borofsky - Amelia Rachel Hokule’a Borofsky, Psy.D., is a community and clinical psychologist based in Hawaii. She teaches at Hawaii Pacific University and writes about health across different cultures.

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Where Great Art Transcends Disability

By Amelia Rachel Hokule’a Borofsky

Dec 13 2012, 10:19 AM ET Comment

How Judith Scott became the first artist with Down Syndrome to have her work featured in the San Francisco Museum of Modern Art -- and then in permanent collections in New York, London, and Paris

A sculpture by visual artist Judith Scott [Photo by Leon Borensztein]

In 1950, Judith Scott, a seven-year old girl with Down's Syndrome, became a ward of the state. She spent the next 35 years in an Ohio state institution. Her twin sister, Joyce Scott, who does not have Down's Syndrome, describes waking up one morning to find Judith simply gone. In her forthcoming book, EnTWINed: Secrets From the Silent World of Judith Scott, she tells a dark story of her mother and father retreating into depression and the aching absence of her twin. "My parents didn't know any better," she told me. "The doctors and the pastor recommended institutionalization in those days." As an adult, Joyce visited the institution when she could, but the aching absence of her twin remained.

Joyce and Judy at Creative Growth

Joyce's daughter Ilana remembers visiting Judy in the institution. "I remember cold floors, people yelling. I remember Judy just sobbing the entire time we were there," she says. The clinical records tell of how Judy "does not seem to be in good contact with her environment. She does not get along well with other children, is restless, eats messily, tears her clothing, and beats other children." The institution did not notice that Judy had acquired deafness from a bout with scarlet fever and gave her an IQ of 30.

Across the United States in the 1970s and 80s, institutions like Judy's shut down. Their Hitchcock-esque legacy, the arrival of psychotropic medications, the financial burden of their maintenance, and a new, enlightened philosophy of integration encouraged the shift. The community health centers to which patients were supposed to relocate, however, did not receive enough funding, and many became homeless. While living in Berkeley, Joyce had what she called "an epiphany," and realized that she could become Judy's legal guardian. She managed Judy's release from the institution and brought her home to live with her and her two daughters. Ilana recalled, of living with Judy: "We would just laugh and laugh and stick as many bananas as we could into our mouths."

To occupy the days while she worked as a pediatric nurse, Joyce enrolled Judy at Creative Growth Art Center in Oakland. When Judy first arrived at Creative Growth, says Joyce, "they couldn't get her to do much of anything." Judy did not like painting, sewing or sculpture class. Then she found her medium in a fiber arts class taught by textile artist Sylvia Seventy. She started wrapping. Yarn disappeared. Magazines disappeared. Even chairs and bike wheels disappeared. All of it would emerge later in colorfully woven sculptures. She even created pieces that looked like twins reaching towards one another.

Sculpture by Judith Scott [Leon Borensztein]

"As she became more confident about her art, she became more confident about her place in the world," says Ilana. "She became more extravagant, wearing scarves, head wraps, jangly things, necklaces." With intense concentration, Judith worked five days a week for eighteen years, producing over 200 cocoon-like sculptures. "If you came to visit her while she worked," says Ilana, "she would shoo you away." Judith became the first artist with Down's Syndrome to be featured in the San Francisco Museum of Modern Art. Her work is in permanent museum collections in New York City, Paris, and London. Her story has inspired five books and three documentaries.

Many other artists like Judith find their voice at Creative Growth Art Center. At the holiday party this year, the place felt electric with artists, community members, food, drink, videos, excerpts from a fashion show, and colorful art covering the gallery walls. During the day, it has the feel of an artist's studio humming with people hard at work. It's hard not to be in awe not only of their focus, but also with the quality of the art.

Tom Di Maria, the center's executive director, explains, "I believe that when you ask people to tell you their story phenomenal things happen. And when paths are blocked other paths become stronger. In our people their artistic voice becomes stronger." Judith Scott's social and verbal communication was blocked for most of her life. Once she found textiles, it became her communication pathway.

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Creative Growth differs from a lot of art therapy in that artists, not psychologists, run the show. Of the 26 staff members, there is only one clinical position for a nurse's aide. Professional artists teach there. The artwork is professionally curated, exhibited, and sold. "Art therapy is a specific practice, like going to a therapist and analyzing it," Di Maria explains. "Here we use art as a way to give voice to our people, many of whom have not been asked to communicate with the world most of their lives. They have been evaluated by what they cannot do and suddenly at Creative Growth they have the power of having a dialogue with society and the world." The art, unlike most of what's created in art therapy, is also just really, really good.

Creative Growth first started in 1974 in the Oakland garage of Elias Katz, a clinical psychologist, and Florence Ludins-Katz, an artist and educator. During this time, people with developmental disabilities in California were first being deinstitutionalized. The founders felt art would help integrate patients back into society after being in an institution for so long. Creative Growth is the first and largest art center for artists with disabilities in the world. Prior to its creation, any artistic activity happened in an art room in a hospital. There had never been an art center whose mission was dedicated to art for and by people with developmental, mental, and physical disabilities.

Over time, the center grew. "We are noticing a generational shift," says Di Maria. "The older artists, having led an institutional life, want to be told where to have lunch and have more institutional behaviors. The younger artists come with modern expectations, seeing art as a career and wanting to see their work in a commercial gallery." Today, Creative Growth serves 162 artists, who regularly exhibit locally and internationally. The artists receive fifty percent of any money made off their work and the non-profit receives the other half -- the same cut as a commercial gallery. There's also a cooperative agreement: some money goes into a pot so that even if an artist does not sell anything, he or she still receives a monthly check. Everyone there is a working artist.

Judy embraces one of her sculptures. [Leon Borensztein]

Art made by people with disabilities has been called "brut art," "raw art," "naïve art" and "outsider art." The term "outsider" art became the most popular term to refer to art made outside of an academic setting and outside of any relationship to art history. Entire galleries devote themselves to showcasing outsider art. But Creative Growth uses none of these terms.

"Discussing someone's diagnosis in relationship to their art is a delicate balance," says Di Maria. "You shouldn't like it just because it is made by someone with Cerebral Palsy or Down's Syndrome. You should love it and then find out who the artist is and their story." Most of the artist's biographies do not mention any disabilities.

"I don't call them 'outsider' because they have lived outside of society their whole lives," Di Maria adds. His tone always communicates immense respect for the artists he works with. "We don't like to reinforce them as being different, so we say 'contemporary artists.' They exhibit a unique voice and a unique vision not seen by other makers. This is what makes the work particularly interesting."

In terms of the future of Creative Growth, Di Maria says that the staff continues to consult on creating similar centers around the country and around the world. In fact, he has just returned from South Korea, having been invited by the government to assist with their transition from deinstitutionalization. "What they have in South Korea is like what we had in the 1950's," he says. "They have never done anything like Creative Growth before." In January, three Korean artists will be featured by Creative Growth at the Outsider Art Fair in New York City.

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They also have plans to turn the entire center over to the artists themselves. "We want to empower them to own and operate their own facility," says Di Maria. Already some of the long-time artists with disabilities work as teaching assistants, at public events, and as curators and philanthropists.

In 2005, Judy passed away while asleep in Joyce's arms. Creative Growth and her art live on. Like all the artists at Creative Growth, and other similar centers in Baltimore, Chicago, New York, London, Paris , Switzerland, and elsewhere, Judy communicated her insider experiences through her art. Perhaps she is not so much an outsider but an insider, inviting the rest of us in.