After an exhausting day at the hospital where Maria was subjected to a battery of tests, Annalisa embraces her wrought child in empathy and love. St. Mary’s Hospital, London, England
Carol Allen-Storey chronicles the untold stories of parents who are creating safe and enduring worlds for their children living with severe disabilities
Photojournalist Carol Allen-Storey explores complex humanitarian and social issues, particularly amongst women and children. Much of her career has been spent working with young people in Rwanda — she has documented the country’s teenage pregnancy epidemic, and teens living with AIDs, as well as the Amahoro generation growing up in the shadow of the Rwandan genocide. This year, Allen-Storey is one of Portrait of Humanity’s judges, looking for work that captures our shared values of individuality, community and unity.
Most recently, Allen-Storey has been shooting an ongoing body of work in the UK, called Defying the Myth, which documents both the daily joys and struggles for families who have a child with disabilities. “The goal is to raise public awareness about the challenges of managing these children and the impact it has on family life,” explains Allen-Storey, “especially the trauma and mental health impact it has on the mothers.”
The resulting images are intimate and complex, showing moments of resilience, love and compassion. Allen-Storey sees the series as a collaboration; “I engage with the mums and all of the children in the process,” she says. “Although my style of photography is reportage, I ask everyone to tell me how they would like to be photographed. I give them small prints, and ask everyone to write a caption or to tell me a story about the image.”
This process of shared story-telling gives the families agency over how Allen-Storey captures their experiences. “It is a personal mandate that the images created are intimate, dignified and honour the sitters,” she explains. “I believe photographs may not be capable of doing the moral work for us, but they can trigger the process of social consciousness.”
Among the subjects is teenager Kallan, photographed at some of his favourite haunts, such as the Natural History Museum in London and the aquarium, where he finds tranquility amidst the marine world. Kallan is particularly fascinated by sharks, and wears a shark fin in reverence to them when he goes swimming in the sea. “Autism does not define my child,” says Kallan’s mother, Nicola. “He is Kallan and I love him.”
In other photographs, Allen-Storey captures the more painful sides to caring for a child with disabilities. Maria, who has Down’s syndrome and other acute medical conditions, awaits abdominal surgery, accompanied by her mother Annalisa. The images show Maria and Annalisa’s close bond; in one photograph, Maria comforts her mother in a reversal of roles. “Maria’s condition makes it difficult for me to find time to do ordinary things with my other children, Jaffa and Duja,” says Annalisa. In another image, Allen-Storey captures Analissa finding a quiet moment to engage in traditional Muslim prayer on a cliff with her son Jaffa.
“It is my aim that all those who view this series will have a more empathetic understanding of what the reality is for families raising children with special needs,” says Allen-Storey. “We must raise awareness of what is needed to improve their quality of life.”