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Arts program provides services, guidance to HIV/AIDS patients

Melissa Mitchell, U. of I. News Bureau arts writer


Julia Kellman
Click photo to enlarge
Photo by Kwame Ross
Julia Kellman, with appointments in the School of Art and Design and the College of Medicine, offers "expressive-arts" classes for HIV/AIDS patients at Carle Hospital in Urbana. She encourages her students to express themselves in whatever way they need. "It's about making meaning out of meaninglessness," she said.

CHAMPAIGN, Ill. — As an art educator and researcher, Julia Kellman has long been aware – from her academic’s box-seat vantage point – that art can impact people’s lives in profound ways. But for the past four years, she’s witnessed the phenomenal power of art-making from the perspective of a director who is on stage, engaging in an ongoing, intimate dialogue with the actors.

Only in Kellman’s case, the actors are real people – people who’ve been hit head-on by the brutal reality of HIV/AIDS diagnoses, then left to work through the many and varied response stages that inevitably follow, from despair and depression to acceptance and healing.

Kellman, who has joint appointments in the School of Art and Design and College of Medicine at the University of Illinois at Urbana-Champaign, began working first-hand with HIV/AIDS patients at a community hospital as part of a small pilot program launched in 2000. In its first year, the Carle Hospital Arts Program – sponsored by the U. of I. medical school’s psychiatry department and funded by the Carle
Foundation – provided individual art instruction for just three people.

Kellman taught the class, which met once a week for four hours – over a 3 1/2-month period – in a medical school computer lab that served as a makeshift art room. Art supplies and projects were stored in a nearby office.

Since then, the program has moved to a home base at the hospital, and more than 25 individuals have moved through the program. And over time, Kellman believes her role has shifted as well. These days, she sees herself less as an instructor, and more as facilitator.

To Kellman’s knowledge, the U. of I./Carle Hospital program is the only hospital-based program of its kind that offers what she terms “expressive-arts” classes for HIV/AIDS patients. Expressive arts, she added, is not the same thing as art therapy.

“Art therapy is much more aimed at diagnosis and treatment,” she said. “It’s really aligned with Jungian analysis. With expressive arts, I use what I know to encourage students to express themselves in whatever way they need. It’s about making meaning out of meaninglessness. Narrative is what gives our lives meaning. It’s that narrative sense that pulls together one’s life into a coherent whole.”

Rather than acting as a therapist, Kellman said her role has evolved into that of an advocate or guide.

“I enable and facilitate; I provide, I set up, I create a sense of place, groundedness and security for the people who come to the class,” she said.

“I see that as my purpose … as somehow managing events and moderating activities so people can do what they need to do to heal themselves. I see myself as a servant … as the old lady who sweeps the bridge and keeps the nails pounded in. And that’s valid. It’s like the mother’s gaze – acceptance of a person and what they produce.”

Last fall, the fruits of the participants’ creative labors – paintings, drawings, shrines and star-shaped art books – were exhibited publicly in an exhibition at the hospital. Kellman hopes to organize a similar exhibition later this year. For now, she is fine-tuning plans for an annual one-day workshop, on Aug. 20, open to former students and anyone interested in participating in the program. Regular fall classes begin on Sept. 19.

In the meantime, Kellman’s personal observations and reflections on the program’s results have been documented in “HIV, Art, a Journey Toward Healing: One Man’s Story,” an article scheduled for publication in August in the Journal of Aesthetic Education.

The article includes what Kellman refers to as ‘two main narrative strands”: in the first, she chronicles her own struggle – off and on throughout her life – with depression; in the other, she relays the story of Joe, a man whose life appeared to be significantly jump-started, in part, she believes, through participation in the expressive-arts class.

“Both stories, his and mine, probe the mystery of disease, expression and the search for coherence,” Kellman writes. “My research and Joe’s story weave together to not only explore the role of art in healing but also the role of the researcher in such enquiries.”

Kellman said she felt compelled to incorporate her own narrative in her research, because personal experience informs her work. And she noted, the approach is not uncommon in feminist anthropology, which often embraces “a more present voice.”

“The fact that I am who I am is what tools me up for that situation (working with HIV/AIDS patients). “If you haven’t had anything disagreeable happen in your life, it’s harder to relate to others … to know, first-hand, what it’s like when – as Paul Simon says in one of his songs – your life is on fire.”

In the end, she said, that’s what the program’s participants share: the need to pick up the pieces of their former lives out of the ashes, and to construct new realities, new narratives. Art provides the context for the storytelling, and the class creates a community in which its members can share their tales.

Joe’s art conveys the story of a man Kellman describes in her article as “articulate, insightful, reflective.” A graduate of a well-known art school, he came to the class with sophisticated art skills, but the disease had left him depressed, isolated and stripped of any sense of hope for the future.
As he became immersed in class – ultimately, as a model and mentor for many other students with lesser art skills – Joe began to blossom. He formed social connections in and out of class and began attending cultural events in the community, Kellman said.

The facilitator-researcher is convinced that art-making, in effect, functions as a bridge to new worlds of possibility and opportunity for HIV/AIDS patients.

“It is this combination – the meaning-making narrative quality of art; the synergy of a group of people in an art class engaged in exploring the wordless, most profound aspects of themselves in images; the close relationships that grow from such intimacy; and the transformation and redefinition of class members as art makers, their empowerment as artists, in fact, that leads to a sense of confidence, competence, balance and control.”

Because her research is not quantitative in nature, however, Kellman concedes that it is difficult to distinguish a direct cause-effect correlation between class participation and other positive changes in the lives of Joe and other art-class participants.

Still, she believes that the class has played a significant part in their healing.

“Though it is important to point out that joining the class may have been the result of an ongoing process of change in Joe’s life and not its cause, there is no reason to suppose that the positive aspects of the class – its warm, supportive nature, and the opportunity it provided to see himself, at least part of the time, as an artist, not patient, as a creator, not passive sufferer – did not also play a role in the changes he experienced,” she wrote.

Kellman is working on a book, which she hopes will provide further documentation of the ways in which engaging in expressive-arts activities can lead to positive outcomes for individuals with HIV/AIDS. She also has initiated discussions with Carle Hospital administrators aimed at formalizing the expressive-arts classes as a permanent hospital program, ensuring that the work would continue after her involvement has ended.