“Sun-Kissed Moments: Carol Allen-Storey Captures Maria’s Blissful Day at the Beach”

Defying the Myth is an initiative focused on three distinct families led by single mothers who are the primary caregivers of children with disabilities. I aimed to highlight these intelligent, brave women, and how their responsibilities influence their everyday lives – along with the lesser-known aspect: the impact on their other children who do not have special needs. This project has spanned a decade, and my admiration for each family has grown tremendously, nurturing a love for them akin to my own.

Maria, the girl in the photograph, has Down syndrome and is on the autism spectrum. When she was six weeks old, it was discovered that her intestines were nonfunctional, leading to their removal and her reliance on a colostomy bag ever since. I was present during a recent five-hour operation to address another complication. Fortunately, she bounced back exceptionally well.

Now 25, she is a gifted artist, currently enamored with Disney’s Frozen characters. Her two younger siblings are also remarkable artists, but early on, they faced difficulties – as do all children when a family member with profound special needs requires additional care. Their mother, Annalisa, had to forsake her own aspirations and dreams.

Defying the Myth commenced after a year-long undertaking for Save the Children focusing on families living in poverty within the UK. Every mother I encountered expressed appreciation for my presence, as being a primary caregiver can be exceedingly isolating. There isn’t much support available. Upon concluding the assignment, I asked Shoulana, a mother I photographed who was raising a child with significant disability, to introduce me to others in similar situations.

I became fully involved in each family’s environment. Whenever I was home and not engaged with assignments, I would spend time with them and assist with daily tasks. We continue to organize outings together frequently. On this occasion, the three families had rented a Winnebago and invited me to accompany them on a weekend trip to the countryside. The weather was beautiful, the children had been swimming in the ocean, and they were in high spirits, reveling in the joys of a perfect summer day. What I appreciate about this portrait of Maria is its simplicity: she’s lovely, having fun, wearing her sunglasses, and receiving an enormous hug from her mother. If you’re not paying close attention, you might overlook that she has an extra finger on one hand.

My photography style is documentary. I typically let events unfold naturally; I don’t ask individuals to pose, nor do I utilize artificial lighting, as I believe it disrupts the atmosphere. I only employ a telephoto lens in conflict zones for safety reasons. Otherwise, I prefer my prime lens, which allows me to move freely and engage in conversation. The environment is usually casual. My camera is stowed away if a sitter feels uncomfortable, which fosters trust – and I never take advantage of such trust. I would never utilize images that could cause them embarrassment; I’m not in search of trophy shots. My goal is to amplify the perspectives of families whose stories often go untold. Everything we’ve accomplished from the very beginning has been a collaborative effort.

Creating intrigue within an image is vital, as it incites questions and sparks curiosity. At times, it can also serve as a catalyst for addressing injustice.

I am deeply committed to this ongoing project and hold a significant concern for these individuals. I hope their narratives can reach a wider audience, allowing people to recognize their dedication. There have been moments when I found myself in tears over the difficulties they endure – the fatigue of managing heavy responsibilities. Yet, they persist in smiling, laughing, and fostering a safe environment for their children. These women are incredibly brave, resilient, and overflowing with love. There exists an abundance of love. It’s a profound lesson in humanity.

Carol Allen-Storey’s Curriculum Vitae

Birthplace: New York City, 1951
Education: Central Saint Martins, London
Inspirations: Photographers Mary Ellen Mark, W Eugene Smith, Dorothea Lange, Eve Arnold, Tom Stoddart, and Sebastião Salgado. Painters Edward Hopper and Caravaggio.
Peak achievement “Several projects I’ve undertaken have sparked positive change, among which is my collaboration with the Elton John Aids Foundation and a local charity in Tanzania to abolish the practice of mandating primary school students to wear red badges sewn onto their uniforms indicating their Aids/HIV positive status. This practice was put to an end following the publication of the essay in the Guardian.”
Lowest moment “My work primarily involves NGOs. Numerous essays I produce for them focus on the aftermath of conflict, displacement, sexual violence, the stigma surrounding unplanned pregnancies among vulnerable young girls, and the repercussions of Aids. In today’s media landscape, it is challenging to visually depict the raw, brutal truths faced by girls under 18. Their narratives often go unheard.”
Best advice “Initiate a personal project centered on your passion(s) and the world you inhabit. Be innovative. Begin with an idea; it is the most crucial piece of equipment you can harness.”