Burden of Care

A woman sits on a plastic chair in a doorway. She looks at the young boy in her lap. Her hand is on his chest. He gazes upward at the sky.

She was a single parent and a qualified preschool teacher but was unable to work at the time because her elder son needed constant support. Diagnosed with cerebral palsy, he was suspected of having autistic traits. She lived with her two children in a makeshift house in Ngong, Kenya, known to locals as “The Slum” © Karren Visser. © Karren Visser. Burden of Care, 2016.
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The daily burdens of washing, feeding, second-guessing the most basic needs of your child often stand in the way of planning beyond the next day. This comes with the constant worry of what happens when you, as a parent, are no longer there. You are both ageing, but your child may remain in a child-like state, dependent on constant care, or become an adult requiring assisted living accommodation.

Most resource-poor countries lack government-funded support services for families of children with disability. What may be there is private, extremely expensive, or not always suitable for a child with autism. This is because autism is a lifelong brain-based disorder making it difficult for a person to interact socially, communicate verbally or non-verbally, and relate to the world around them. The management of people with neurodevelopmental impairment requires highly specialised staff, but such training is rarely to be found. These are the worries many shared with me when I photographed their children and the burden of care between 2014 and 2016.

Parents try to hide their fears. Some regard their child as a gift from God. I have seen exhaustion and the impact of this on their health. But each time I pass round my camera so that my images can be viewed – I mention my eyesight is poor and ask them please to check the details are in focus – the smiles that light up the parents’ faces tell me that I have photographed their child as their child, no matter the burdens. Love is there and a child cherished.

An image of a seated woman with her disabled daughter in her lap and her toddler son on a step behind her.

I photographed this family along an alleyway that accommodated one-room rentals mostly for single woman and their children in Kilifi, Kenya. The mother lived there with her severely disabled daughter and toddler son. It was difficult for her to work without relying on neighbours to take care of her children for short periods of time © Karren Visser. Burden of Care, 2014.
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A woman in her twenties with a pink headscarf cups her hands around the face of an adolescent girl in a wheelchair. The background is lush green vegetation.

Cupped in the hands of her older female cousin, this 16-year-old was unable to sit unaided in her wheelchair. Her mother was away working, and her cousin cared for her at their family homestead near Kilifi, Kenya. According to the cousin, there were no complications at birth, but everything changed after the girl had malaria and yellow fever as a baby © Karren Visser. Burden of Care, 2014.
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A man sits on a makeshift bench with his 7-year-old son in his arms. The boy’s head is bent over, and his arms and legs hang down against his father.

This man worked as a cleaner in the house of an Italian family in Kilifi, Kenya, but was concerned to be away from home where he was unable to help his wife. Although born healthy his son developed and bears the consequences of neonatal jaundice. The man’s employer has since funded the building of a house that is nearer his work, and where he now lives with his wife and child © Karren Visser. Burden of Care, 2014.
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A woman sits in front of a building of corrugated iron sheets and dried reeds. A boy leans against her, seated on a mat. A small dog watches them from behind.

The teenage boy has muscular dystrophy and was unable to walk or stand. He could write and read. It was clear that he wanted to engage with his surroundings. His mother wished to send him to a school for children with disability in Mombasa, Kenya, but she could not afford to do so. Her husband had died, and the family lived mainly off the land.

A mother and son stand in a yard surrounded by houses with grass roofs. A group of children are in the shade of one of the homes, looking at the camera.

The boy holding his mother’s hand for the photograph was unable to speak. He wandered in and out of the houses with the ducks and hens. The other children left him alone. The homestead in rural coastal Kenya was large and centred around the traditional dwelling of the elderly patriarch. He was the father of this boy, called Lucky © Karren Visser. Burden of Care, 2014.
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A girl is dressed in a white crinoline dress with puffy sleeves. She is held tightly by her mother who stands behind her.

Local community leaders in a rural area of Kenya organised an event to support disabled people. This mother attending the meeting said she had not done the physiotherapy exercises to help her daughter with cerebral palsy when the girl was young. Now she can neither sit up without support nor walk. She needs constant care.

In a classroom, a woman in a blue patterned hijab stands behind her daughter, her hand on the girl’s head.

An adolescent girl her mother said was in her teens, was suspected of being on the autism spectrum. She came from a Somali family with extremely limited means, exacerbated by their migrant status in Kenya. The father found what work he could. The mother suffered from depression. This situation is indicative of many others where people migrate from or are forced to flee their home countries in Africa.

A mother sits on a log against a palm tree with her profoundly disabled son in her lap. She is looking at her mobile phone.

Contracting meningitis and neonatal sepsis at birth, this woman’s son was admitted to the district hospital for the treatment of hydrocephalus. The draining of the fluid left an indentation on one side of his head. Not well herself, the mother relied on her other children for the care of this son. Her husband was a fisherman. He did not wish to be photographed holding his son.

Two boys stand in a school playground, looking up in anticipation of catching a ball. The taller boy’s arms are stretched out like a bird’s wings.

The taller boy with the dark blue shirt has autism and was non-verbal until he was 9 years old. His friend in red and blue is hosted by the boy’s family. He is the boy’s buddy, helping him at home and school. At weekends they like to play basketball in the playground of a school in Kigali, Rwanda.

A young girl is on her mother’s back. Her hand gently cups her mother’s neck. She appears distressed. Her mother is turned to listen.

A parent is their child’s best advocate. This mother makes an enormous effort to include her daughter in social activities, even though the girl does not speak and seems to engage little with her surroundings. The mother has also invested in sending the family housekeeper on autism training courses to help take care of the girl. They were photographed at a restaurant with a children’s play area in Kigali, Rwanda.

A mother and adolescent son stand behind a pool table. They are both laughing and holding cues.

A Rwandan mother and her adolescent son enjoy playing pool at the games’ hall of the Kassam Stadium, Oxford, UK. He was diagnosed at the age of 3 years with autism and complex speech and language disorder. An important insight I gained from photographing them is the comment made by the mother, “People think those with autism are in another world, that is not true, they are in our world watching us” © Karren Visser. Burden of Care, 2016.
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© Karren Visser. Burden of Care, 2014 – 16.