I began photographing children with neurodevelopmental impairments – autism spectrum disorders, epilepsy, and cerebral palsy in 2012. What I noticed was how the children tried to communicate. Some could not speak. Some had visual or hearing impairment. Others could not walk, or sit upright. Communication was often unexpected, a quick burst of movement, and laughter out of the blue. I saw patterns and began to anticipate moments that would come and go. Particular to each child, and only rarely verbalised in words, I sensed deep desires to connect with others.
Many of the portraits show the anxiety and isolation these children feel in trying to make sense of the expectations of the world they live in. There is an acknowledgment of parents, siblings, grandparents, and of mothers in particular. In most families it is they who are left to carry the burden of care.
It took a tame giraffe in a South African game park to lick my face for my parents to register there was something wrong with their 5-year-old daughter’s sight. I saw the microvilli on the tongue, not the giraffe. The first time I came home with glasses I rushed around pointing out mountains and trees. I soon learnt in my first year at school to pretend. But it was not possible with thick catseye glasses to avoid teasing or being made to feel inadequate. In my teens, contact lenses hid this enough for me to devise ways of seeing. Throughout school, university, in work situations, and until very recently I’ve kept quiet about my poor sight.
In 2012 when I had the opportunity to photograph a little girl with Rett syndrome in Kenya for a University of Oxford Autism in Africa funding campaign, I knew that notwithstanding impaired vision and perhaps even because of it I had to photograph. That is what I have to give. A voice for the children and their parents.
I would welcome enquiries for photography and collaboration from individuals and organisations with an interest in disabilities in children and adults, in particular those with neurodevelopmental impairments.