U of O Arts & Administration Program
CultureWork: Current Issue
September 2004. Vol. 9, No. 1
An Expressive Arts Hospital Program for People with HIV/AIDS: A Description, Two Stories, and Explanations
by Julia Kellman
Introduction/Description
The Carle Hospital Arts Program, sponsored by the Department of Psychiatry of the University of Illinois School of Medicine for people with HIV/AIDS, is moving into its fourth season. It began with a pilot program with three participants who were seen individually for art instruction once a week for a three and a half month period in the medical school computer lab which served as a makeshift art room. Supplies and projects were stored in the office of the soon to become Head of Psychiatry and her office partner.
Since these early beginnings, the program has developed into a regularly
scheduled, weekly four hour class with a core group of three to five people
who meet together in an education room in the hospital to make art. We
have purchased an art cart with the help of two small grants and loaded
it with a variety of art supplies; and we have been given access to a
closet on the first floor of the medical school where we can park the
cart and store art materials and projects.
Though enrollment remains stable
and small during each workshop period, twenty people in all have taken
part in the program; two former class members periodically visit to see
what people are doing; and one man maintains close social ties to individuals
in the group.
Besides the participants, other changes have occurred over time, too.
Significantly, programming is now driven by consensus as the participants
choose projects, plan field and sketching trips, picnics, and dinners.
My role has shifted, too; and I, teacher/researcher, have become
a facilitator and colleague.
The most significant changes, however,
are in the lives of the participants. What follows are stories of some
of these people and the alterations in their lives.
New Stories/New Lives
The
class provides an opportunity for many kinds of growth for individuals
taking part. For one man in his sixties, a first time art maker, it opened
a world of new skills and experiences, weekly interactions with similarly
interested individuals, and the pleasure of selling a watercolor in the
yearly Artists Against Aids show. For a woman, it was the weekly delight
in process, in a time set aside for glue and scissors, companionship,
and in finding and cutting out images of her favorite subjects from the
stack of magazines. For others, however, the learning and growing moved
far beyond the level of new studio skills and shared experiences,
for their lives changed in substantial ways during the time that they
attended class. For these people, at least, the community that developed
during the art class seemed to serve as a bridge or transition point to
an expanded more satisfying life.
Two exemplars will serve here, Pat
and Roger, for they portray growth from relative isolation to full engagement
with the social world, the role of art in this alteration, and the place
of the art class/community that seems to lie at the heart of their development.
For Roger, charming, energetic, with
a shock of grey/blond hair, and an abiding concern for others, participation
in the art class was a natural undertaking, since his undergraduate degree
was in art education. Because he had not made art for an extended period
of time, however, Roger, like anyone else when they start something new,
was cautious and unsure where to begin his reentry into the world of colored
pencils, paper, and paint.
Even during his first hesitant
projects, Roger would sometimes remark, "I'm so relaxed," "The
time has really gone fast," and, "I haven't thought of anything
else the whole time," an indication that, for him at least, the class
provided momentary relief from pressing health problems at the same time
it offered the encouragement to again take up art making in his spare
time.
Most importantly, however, as
Roger's art became more vigorous and based on his imagination, his life,
too, took a similar turn, as he shifted from a position of relative social
isolation to involvement with the greater community AIDS coalition and
other activities. He moved from a small efficiency apartment to take the
role of on-site manager of the HIV/AIDS group home, and then, after several
months, to an apartment with a friend. He joined the coalition advisory
board and the food bank. He took a computer course and a Spanish class.
He redecorated the group home, planted flowers in its garden, and planned
its social activities. Roger's energy and social involvement carried other
members of the art class along, too, bearing them up with his new energy
and enthusiasm. In their turn, the class members, now frequent companions
on work days at the shelter, at coalition meetings, support groups, and
social occasions encouraged and sustained him as he moved into the wider
world.
Though Roger's increasing involvement
with art making may arguably be the result of his developing sense of
confidence and his reentry into life after his initial catastrophic illness
and not their cause. These two changes, nonetheless, appeared in tandem,
suggesting a link between them and the possibility of a mutually reinforcing
system of interactions. Significantly, this pattern can be found in the
lives of other class members.
Pat is just such an exemplar. Encouraged to join the class by my presentation at the hospital's annual AIDS conference, he shyly appeared the following week with a sack of art supplies. Articulate, insightful, and reflective, with sophisticated art skills, and a degree from a well known art school, Pat immediately became a valuable member of the class. His superb studio abilities and his sensitivity to the needs of others made him a mentor for the other students and the unofficial class monitor.
Pat, like Roger at the beginning,
was just now taking the first hesitant steps away from the self-imposed
isolation and the depression that follow the medical catastrophes that
herald the activation of the AIDS virus; and he also was suffering through
a period of profound despair. Nonetheless, as the weeks passed, Roger
was able to coax Pat into a variety of activities--movies, meals out,
and other social activities. The other class members played a role, too,
nudging Pat to take part. Carried on the winds of the art class's support
and Roger's charm, Pat flourished. He began to relax and chat
in class. His art too seemed to become more daring, mirroring and reinforcing
his life's new direction; and he began to make art at home.
Though it is important, as it
was in Roger's case, to consider that joining the class may have been
an indication of the process of change in Pat'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 artist, not patient, creator, not passive
sufferer--did not also play a role in the changes he experienced.
These personal alterations were
not simply my imagination, either, for they were affirmed late one afternoon
in class. In the silence broken only by the rustle of papers Pat suddenly
spoke in a voice full of wonder, "I'm back." "I'm back,"
he said to himself, as much as to us. "Welcome home, Pat," I
replied.
Outcome/Significance
What is the significance of the hospital art class for its members; and
what have I come to believe about the role of teacher/researcher in such
an undertaking?
What
is most important, it seems to me, is the class itself, not just the art
making. For the class provides opportunities to develop a new sense of
self based on accomplishments and is itself a small community of familiar
people who weekly strive to create new narratives to mend their lives.
This later point is an especially significant undertaking for people who
are ill, for as medical anthropologist Gail Becker (1997) suggests, people
who undergo the chaos of illness need to tell the, "Stories in terms
of which their lives made sense" (p.25). The art class
allows its members to do just that, providing a means and place to take
charge of, and to tell, a new story of themselves within the shelter of
a supportive community of acceptance and concern.
And who am I, the researcher/teacher?
I am the old woman who lives in a hut on the edge of a small stream next
to a tiny bridge. I'm the one who cleans the hut and repairs the bridge.
I'm the one with a pocket full of oddments--bits of ribbon, countless
stories, paper, pencils, brushes, glue, and paints. I am the vulnerable
observer (Behar, 1996) whose life is inexorable tangled with the lives
of the people I teach and touch. I am the woman who performs acts of personal
witness, and who, like the poet Theodore Roethke (1961) "learn[s]
by going where I have to go" (p.104).
References
Becker, G. (1997). Disrupted lives. Berkeley, CA: Beacon.
Behar, R. (1996). The vulnerable observer. Boston: Beacon.
Rothke, T. (1961). Words for the wind. Garden City, NY: Doubleday.
Julia Kellman, Ph.D.
Dr. Kellman is an associate professor of art education and psychiatry. She earned her Ph.D. in art education from The University of Iowa in 1991. She teaches courses in art and science, community art, and art appreciation to both graduate and undergraduate students. Her research interests include the role of expressive art making in health care, especially for HIV/AIDS patients and children with special needs. She is a member of the National Art Education Association, the American Anthropological Society, and the Society for Art is Health Care.
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