Photographer Carol Allen-Storey's decade-long project
Award-winning London-based photographer Carol Allen-Storey has spent over a decade chronicling the untold stories of single mothers who create safe and enduring worlds for their children living with severe disabilities. Her project, Defying the Myth, will be published in July 2026 by GOST.
The series features intimate portraits of three mothers: Shoulana, Annalisa, and Nicola, whose children Mekhye, Maria, and Kallan have severe cognitive disabilities and require round-the-clock care. Allen-Storey's images capture both the harsh daily struggles and the profound love that defines these families.
A collaboration rooted in love
Guardian head of photography Fiona Shields, who wrote the foreword for the book, said: 'When Carol invited me to write a foreword for the book, I thought I would be commenting on the quality and purpose of her photography project, shedding light on disadvantaged families living with a child with disabilities and all the harsh and bleak aspects of that daily struggle. That is all true, but the real surprise comes from the power of the work as a collaboration, the creativity that a shared mission has unlocked for everyone. There is poetry, art, photography and above all there is love.'
Shields added: 'Carol's initial motivation was to reveal a lived experience that often remains unseen and can be the focus of prejudice. The aim was to defy myths and destigmatise disability; to give an unflinching view of the lives of Shoulana, Annalisa and Nicola, single mothers whose children Mekhye, Maria and Kallan have severe cognitive disabilities and require round-the-clock care. An earnest, worthy cause for any professional photographer but Carol is not just any photographer, she brings a huge open heart!'
Moments of tenderness and challenge
The photographs document both difficult and joyful moments. One image shows Annalisa in her garden at the end of a challenging day. Another captures Maria awaiting scheduled abdominal surgery while watching one of her favourite films on her mum's phone, reversing roles to soothe her concerned mother. After an exhausting day at the hospital where Maria was subjected to a battery of tests, Annalisa embraces her overwrought child in empathy and love.
To relax Maria before her complex abdominal surgery, Annalisa dressed her as one of her favourite Disney Frozen characters. Despite the challenges, her bright spirit shines through, even in the hospital setting. Another image shows Shoulana placing an epilepsy helmet on Mekhye's head, something he must wear every waking moment to protect him from life-threatening seizures that strike him daily. Despite the unending challenges, Shoulana remains positive and cheerful, always encouraging Mekhye with challenging patience and motherly warmth.
Daily care and creative coping
Nightly, Mekhye is bathed by Shoulana. He enjoys the warmth of the water, which relaxes his stiffened body when he has seizures. Given his daunting extreme acute neurological condition, the task of bathing must be highly supervised to ensure his safety. On a sunny afternoon in Battersea Park, Kallan metamorphoses into the demeanour of Godzilla. Kallan uses his voice to stim instead of flapping or hitting his head. He mimics Godzilla's roar, enjoying the feeling the noise has on his throat, along with representing his love of unusual creatures – this helps desensitise his central nervous system.
At a local pet shop in Bury St Edmunds, Kallan is enraptured by the exotic beauty of tropical fish. He has an obsession for the natural world, especially water life and the extinct beasts of the dinosaur era. When he was diagnosed on the autistic scale at 18 months, he shut down, withdrew and his ability to speak fell away. Through the unswerving tutorial of his mother Nicola, he now communicates, has an extended vocabulary and is very social when engaged with peer groups and those he knows and trusts.
Finding new ways to connect
Kallan and his mum Nicola share an intimate moment at the Sea Life London Aquarium. The motion of the sharks swimming balletically has a calming effect on him. Whenever he visits the aquarium, he wears a shark swim-fin to be at one with the creatures of the deep swirling calmly in their adaptive artificial home. Kallan can get overstimulated, which can lead to him having a meltdown. Nicola has a way to recognise these as they start and can determine what works to desensitise his central nervous system.
Kallan transforms his body language into a dinosaur at the Natural History Museum in London, a creature he greatly admires and is obsessively drawn to. He is also obsessed with his iPad, which he uses extensively to explore topics that intrigue him. He has taught himself to identify subjects, especially on YouTube, where verbal skills aren't required, and then navigates to other links to continue his exploration and quest for knowledge. Nicola holds her forehead against his as a level of affection Kallan can handle from her. It's not always possible to hug, kiss and hold a child with autism, so Nicola finds new ways to show simple affection.
Reciprocal relationships
A portrait of Shoulana at the end of a demanding frenetic day caring for Mekhye and Gabriel reveals the toll of caregiving. Shields writes: 'The relationships these families have forged with Carol are truly reciprocal, as the images testify. There is a total acceptance of her presence in family life – indeed she is part of the family. When she was recently bereaved for a second time their kindness and concern for her was a lifeline, rallying to support their “Auntie Carol”.'
