Children with special needs express themselves with photos

Given digital cameras, children who otherwise would not be able to share their stories have… Given digital cameras, children who otherwise would not be able to share their stories have the chance to do so on their own terms, through their own eyes.

‘Through Our Eyes: Life as Seen by Young People with Special Needs,’ the appropriately-named new exhibit at 105 Gallery in Homestead, features photographs taken by children with special needs as part of a project that paired them with graduate student mentors who visited them at home and talked about their photographs.

The project involved five local families and their children with special needs and matched them with five graduate students who were either fellows or trainees with the University, Community ‘amp; Leaders for Individuals with Disabilities Center. These fellows and trainees are part of UCLID’s goal to educate new leaders in patient-centered care for children with special needs and their families.

The children took pictures that documented the parts of lives that were important to them. Most of the children included images related to their disabilities, from their medication to long clinic hallways, but many of the photographs were not related.

Darla Clayton, a UCLID fellow pursuing her post-doctorate degree in psychology, said that the 10-year-old with hemophilia and autism with whom she was paired took about 30 pictures of his favorite pet guinea pig Squeak, as well as lots of pictures of buildings and toys.

‘I was taken by the fact that he took all these pictures of things you would expect,’ said Clayton. ‘He has a disability, yes, but he took pictures like any other child. He has the same interests, he has the same passions and he also has a disability. For me, it was important to think of all kids as whole people first, not focusing on their problems.’

Kate Monahan, a UCLID fellow finishing up her second year in Pitt’s doctor of audiology program, was paired with a 16-year-old junior in high school with sickle cell disease, whom she preferred not to name.

Monahan said that the important part of the project for her was the relationship between mentor and child and that the photographs were a byproduct of this relationship.’

Each weekend, Monahan visited the student at his house and talked to him about the pictures he had taken.’

‘It was kind of a starting point too for getting to know him and talk to him,’ said Monahan. ‘He would talk about each picture and why he took it, why it was important to him and the reason why he took it.’

Because his brothers would be playing nearby and Monahan would have extended conversations with his mother, she said she feels she really entered his life.’

Monahan and her mentee still keep in touch, and she plans to go with him to his next three-week transfusion. She said that if he wants, she is also open to keeping in touch in the future.

Monahan explained that the project offers a different view on patients’ lives that taught her about understanding them more as people as opposed to patients. It was about going out into the community, meeting a family and getting to know their story and lives and getting to know them on another level than the clinic setting, said Monahan.

‘It’s realizing it’s more than just an ear,’ said Monahan. ‘It is the whole person with a whole life that they’ve got going on around them. And while you may think you know what their priorities are, you probably don’t. They’ve got their own set of priorities, their own life and you just have to fit into that somewhere.’

Jane Bernstein, a UCLID faculty member and English professor at Carnegie Mellon University, piloted the program. She was previously involved in a similar project at Charles Morris Hall, a community for adults with neurological disabilities.

Bernstein said that the first photographer she knows to experiment with this type of project was Wendy Ewald, a camp counselor in Labrador, Canada, in the 196’s.

Ewald introduced the Polaroid camera to the camp’s Innu youth population and had great success. Today, international organization PhotoVoice introduces similar projects all over the world, with the intent of giving people who are traditionally the subjects of works to become the creators.

‘It’s a means for people to depict their lives,’ says Bernstein, ‘and this issue of people who are marginalized or disenfranchised tends to be an important element, because instead of officials describing their lives and talking about what they need, what they want or issues in their communities, they have the means to depict their lives.’

As the mother of a grown adult with developmental disabilities, Bernstein explained that for parents, the exhibit was something that validated their children, who are often devalued because of their disabilities, and gave them a way to communicate their lives.

Monahan agreed and said that her subject discovered he could get his story out there and use it to affect other people’s lives. With his aspirations to work in television, said Monahan, it was especially exciting for him to discover this possibility.

One of the children who took part in the project did not speak, Monahan said, and the camera provided him with a whole new way to show his world. The child’s parents have decided to buy him a digital camera, said Monahan, because it proved such a valuable tool for him to communicate his life.

Bernstein said that the project will continue next year, with an emphasis on getting the mentors set up with their children earlier to give them more time to establish a relationship.

‘Through Our Eyes: Life as Seen by Young People with Special Needs’ is presented by UCLID and the Steel Valley Arts Council and funded by a training grant through the Maternal Child Health Bureau.