1854 Awards

Portrait of Humanity: Defying the Myth

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.” 

Kallan transforms his body language as a dinosaur, a beast he greatly admires and is obsessively attracted too. Natural History Museum, London, England

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.”

Parenting and caring for a child who has severe disabilities is an immensely complex affair. Parents walk razer edge on many decisions when it comes to the well being of their children. Crucial to family life is respect and love that they engage with their child. James is on the extreme scale of autism, non verbal. This is his world, his parents have decorated his room to reflect his passion for trains. At home, London, England.

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.”

Although Mekhey can walk, his legs are week and unstable which require for any outings to be strapped to a wheel chair. He flaps his hands and screeches sounds which can be unnerving to those who are unaware of his condition. This young girl tentatively walks past, uncertain of his physical and mental issues. City Farm, London

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.”

Do you want to be part of the movement? Together, we will create a Portrait of Humanity 

The Aquarium is a favourite destination for Kallan. He finds tranquillity amidst the marine world, especially his fascination with sharks. He wears a shark fin in reverence to these feared creatures of the sea. His mum Nicola shares his joys. Sea Aquarium, London, England
The sparkling sunshine and dramatic sand dune scenery inspired Analissa to have a traditional Muslim prayer on a cliff with her son Jaffa. Weymouth Beach, Dorset, England
At Weymouth beach, on a sun drenched afternoon, Kallan swims joyfully as though he was a shark in the ocean. Being embraced by the undulating motion of water creates an inner calm for him. His friends Duja and Jaffa join in the frivolity. Weymouth Beach, Dorset, England
The Natural History Museum is a favourite haunt of Kallan, on the autistic scale since he was 3 years old. He shares a respite moment with his mum after wandering through the dinosaur exhibition wearing a dinosaur mask, a gift from his mum. The Natural History Museum, London, England
Both of Tracey’s children were born with autism. She and her husband have coped with their disabilities since birth. Her daughter Lisa is in a mainstream school which has not been able to cope with her disability. At home, London, England.
At dusk, Tracey takes her dog and son James, 18 for a walk along the Regent’s canal. James is severely autistic and must be highly supervised 24/7. Regent’s Park canal, London, England
Kallan and his mum Nicole share an intimate moment at the Sea Life London Aquarium. The motion of the sharks swimming balletically has a calming effect on his autistic persona. Whenever he visits the aquarium, he wears a shark swim-fin to be at one with atmosphere. Sea Aquarium, London, England
Maria is intensely frightened of needles and especially blood tests. Finally after multiple attempts, Maria was soothed by her sister Juba and Mum, allowing the nurse to take the samples. St. Mary’s Hospital, London, England
Maria dresses in one of her favourite Disney’s characters whilst awaiting the scheduled abdominal surgery. Whilst watching a film on her phone, in a reversal of roles, she soothes her mum Annalisa. St. Mary’s Hospital, London, England

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