.png)
3 hours ago
1
Defying the Myth is a project about three different families headed by single mothers who are the primary carers of children living with disabilities. I wanted to shine a light on these intelligent, courageous women, and how this role affects their day-to-day – and the less known side of the story: how it affects their other children who have no special needs. It’s been a decade-long project, and I have come to admire each family so much and love them like my own.
Maria, the child in the picture, has Down syndrome and is autistic. When she was six weeks old they found out her intestines were not working, so they were removed and she has had a colostomy bag ever since. I was there during a more recent five-hour surgery to remedy a further complication. Miraculously, she recovered brilliantly.
She is 25 now, and a talented artist. Currently she is obsessed with Disney’s Frozen characters. Her two younger siblings are also amazing artists but it was challenging in the early days for them – as it is for all children when one person in the family with severe special needs demands more care. Their mother, Annalisa, had to abandon her own dreams and ambitions.
Defying the Myth began after a year-long project for Save the Children about families living in poverty in the UK. Each of the mothers I visited remarked how good it was that I was there, because it can be very lonely being a primary carer. You don’t get a lot of support. After the assignment, I asked Shoulana, a mother I had photographed who was raising a child with a severe disability, if she could introduce me to other families.
I became totally involved in each family’s world. Whenever I was home and not working on assignments, I would spend time with them and help with daily chores. We still often plan outings together. On this occasion, the three families had rented a Winnebago and asked me to join them on a weekend jaunt to the country. It was a gorgeous day, the kids had been swimming in the ocean and were in high spirits, enjoying the pleasure of a perfect summer day. What I like about this portrait of Maria is that it’s just her: she’s pretty, she’s having fun, she’s got her sunglasses on, and her mum had just given her an enormous hug. Unless you’re paying attention you don’t notice she has an extra finger on one hand.
My style of photography is reportage. I usually allow things to unfold, I don’t ask people to stand somewhere and I don’t use artificial light, I think it spoils the atmosphere. I only use a telephoto lens in a conflict region, for safety. Otherwise, I love my prime lens, it allows me to move around and chat. The atmosphere is always informal. My camera is put away if a sitter is uncomfortable, which creates trust – and I don’t ever exploit it. I would never use any pictures that would embarrass them, I’m not looking for a trophy picture. My aim is to give a voice to the families’ unrepresented world. Everything we’ve done since day one is a collaboration.
It’s important to create mystery in an image too, so that it makes you want to ask questions and it stirs your curiosity. And sometimes it can act as a call to action to rectify an injustice.
I am deeply involved in this ongoing project and care a great deal about these people. I hope we can get their stories out there, so people can appreciate their commitment. At times I would be in tears at the challenges they face – the exhaustion of dealing with what they have to deal with. And yet they continue to smile and laugh and create a safe environment for these children. These women are so brave, so courageous, and so filled with love. There’s love all around. It’s a lesson in humanity.
Carol Allen-Storey’s CV
Born: New York City, 1951
Trained: Central Saint Martins, London
Influences: Photographers Mary Ellen Mark, W Eugene Smith, Dorothea Lange, Eve Arnold, Tom Stoddart and Sebastião Salgado. Painters Edward Hopper and Caravaggio.
High point “There are a few projects I have developed that initiated change for the good, among them working with the Elton John Aids Foundation and a local charity in Tanzania to eradicate the practice of forcing primary school students to wear red badges sewn on their uniform denoting their Aids/HIV positive status. The practice ended as a result of the essay published in the Guardian.”
Low point “My work is principally with NGOs. Many of the essays I create for them are about the aftermath of war, displacement, sexual violence, the stigma of unwarranted pregnancy among vulnerable young teen girls, the stigma of Aids and its aftermath. In today’s media world, it is hard to visually show the raw, harsh realities for girls under the age of 18. Their stories remain untold.”
Top tip “Create a personal project about your passion(s), and about the world you live in. Be experimental. Start with an idea, that is the most valuable piece of equipment you can bring into force.”
