My Perspective through Photovoice
These days young people are accustomed to recording and sharing the minutiae of life through the lens of a camera. Scholars are proposing the use of photography, a medium that the vulnerable in society can accept and manipulate, to tease out observations on their predicament and their hopes for the future. This is called Photovoice. In the cancer ward where adults make all the decisions, young people often feel extremely helpless and vulnerable when faced with an army of medical experts. Hence our child life specialists are advocating the use of Photovoice to encourage patients to record on camera their feelings about treatment. This helps put the experience of being sick under the microscope - or through the lens, in fact, so that we may reflect on what has been lost or gained in the process.
The plan was conceived in mid-2014 when child life specialists began recruiting participants for the programme. Eventually nine young patients: Benny, Elaine, Kit, Oscar, Sze Sen, Yin, Tears, Ka Mei and Yuet Yuet signed on, took some 160 photographs under the guidance of the specialists, and wrote about their thoughts and feelings in captions and titles of the photos. Whether it's a quick snap-shot of a street scene or an elaborate meal on the dinner table, the specialist said it was clear what the photo represented. To the participant it was a moment of truth.
These hundred plus photos were displayed in the Photovoice Exhibition in Youth Square, Chai Wan. The child life specialists hoped that visitors to the exhibition would take time to look at the photos and through them to appreciate the inner worlds of these special young people. At the opening of the exhibition a small event was held for a few of the participants to share their stories behind the photos. Oscar's mother said she deliberately stayed out of the process and left her son alone to do the photography and writing. She didn't see the photographs until the exhibition and was caught unaware that her son would tell such a moving story. Seeing Oscar's photos on the day of the exhibition, she was overwhelmed by emotions and, most of all, filled with pride.
Kit, by participating in Photovoice, hoped to share his thoughts and feelings during treatment, such as the longing for family members to turn up in hospital to keep him company, no matter the time of day, the strength he must muster to endure the pain from injections, the prayers he quietly said when he felt alone and down in the dumps, and the gratitude he felt for his aunt's dedicated care and concern. The joy and pride that emanated from that big smile on his face was unmistakable.
Sze Sen is the reticent type; he said he didn't think too much when he took the photographs. He just tried to take down what he saw and then wrote the captions and notes to accompany the photos. As he looked at the photos again in the exhibition, what he had experienced in the past came rushing back to him and he felt it all deep in his heart.
We hope more people could truly appreciate the trials experienced by the young cancer patients; they maybe young or even small children, they had to and could overcome the many obstacles in their way. They do not want pity or sympathy, but rather appreciation and acceptance.
Here are some of the photos in the exhibition:
"As I step out of the bone marrow room, I feel I have won the battle against cancer and this is a new beginning to a healthy life." Benny
"I have been sick since the age of eight and accumulated ten years of experience in IV cannulation. The trick is to "stay still". As long as I sit still, we're more likely to get the vein in the first try, so it'll hurt less." Elaine
"You are always in a hustle and bustle. Have you ever stopped to take a good look at this world?" Tears
"I must have a blood test every day. Luckily there is the small tube, which helps eliminate a lot of pain." Kit
"To make sure I don't get cold or burned because of my bald head, I have ten caps. Of course, some of them were just bought for fun!" Oscar
"Just been discharged to go home, it seems such a long time ago that I last saw the streets." Sze Sen
"Seeing the world behind a face mask." Ka Mei
The hand holding mummy refuses to let go each and every time." Yin
"To light up everything in life our happiness blooms." Yuet Yuet
CCF Newsletter Vol.49 (Jan 2016)