When Jennifer Swanberg, Ph.D., gave cameras to a group of sick children, she expected pictures describing their battle against debilitating illness.
What she got were pictures of kids being kids–and that, she said, was even more powerful.
Justin, 16, summed it up pretty succinctly, Dr. Swanberg said.
Justin died last year of cystic fibrosis; his photographs didn't dwell on his medications and limitations but on his activities and love of life instead.
“I wanted him to tell a story about dealing with his medical complications. I even pushed him a little, like, 'What about pictures of your appointments?' He said, 'Hey, I'm a kid first. Nothing else matters.' ”
Justin's experience with photoexpression was the genesis for “I'm a Kid, Too,” a project Dr. Swanberg launched with the Lexington (Kentucky) Arts and Cultural Council. The project supplied cameras and photojournalism mentoring to 15 children with debilitating illnesses. In addition to being medically fragile, all the children faced another psychosocial hurdle: They were each adopted.
Dr. Swanberg of the College of Social Work at the University of Kentucky, Lexington, said the youngsters astounded her with their images. “They didn't even really know, consciously, what they were producing, but the results were profound.”
Tim, a boy confined to a wheelchair because of spina bifida, drew his inspiration from chalk art on the local playground asphalt. One of his photographs shows a chalk drawing of a bicycle.
Because he shot it looking down from his wheelchair, the picture also includes his feet. “When the kids saw it, they cheered, 'It's the closest Tim will ever get to riding a bike,'” Dr. Swanberg said.
The project's most compelling message, Dr. Swanberg said, is that sick children are, first and foremost, children. “We can't view them as just a diagnosis. They are more than their illness.”
The 8-week program culminated with a public showing of the pictures, an event that filled the artists and their parents with pride. Often ostracized because of their illnesses, the children reveled in their accomplishments, Dr. Swanberg said.
So profoundly did the show affect the community that the university has decided to incorporate the project into its health care professions' curricula.
Beginning next year, pediatric and psychology residents, as well as nursing and social work students, will be required to attend a 3-hour seminar about the psychosocial needs of children with significant medical conditions and about the foster care and adoptive systems they could encounter. The images of “I'm a Kid, Too” will be an important component of the course.
“It's a wonderful opportunity to educate students about the foster care system and the adoption process,” she said. “For instance, if a child is in foster care and needs medical attention, who makes that decision? It gets complicated and, when doctors are unaware of this issue, it can make treatment harder.”
In the meantime, Dr. Swanberg said she hopes to secure additional funding to make the program available to larger numbers of children, perhaps by linking it with the local youth-development center. “It gave them such a feeling of self-efficacy and boosted their self-image,” she said. “I'd like others to be able to experience that as well.”
The “I'm a Kid, Too” project urges children with debilitating illness to express themselves through photography. Courtesy Dr. Jennifer Swanberg