NAIROBI, Kenya – Just a few meters from the bus station in Nairobi’s Eastland area, as buses rumble by and conductors call out to their passengers, Mary Mwikali is busy feeding her youngest child, four-year-old Naomi Njoki. The little girl can’t feed herself, because she was born with cerebral palsy, an incurable condition that is thought to be caused by brain damage before, during or soon after birth.
Before Njoki was born, Mwikali, a 40-year-old mother of three, was happily married and made a good salary in her job at a nearby biscuit company. Now, she is divorced, two of her children are staying with her uncle and she is raising Njoki alone, barely earning enough to make ends meet.
“My life came crumbling down after the birth of Njoki,” she says. Upon finding out their baby had cerebral palsy, Mwikali’s husband abandoned the family. Njoki’s condition required her to stay at the hospital for four months after she was born, keeping Mwikali away from her job longer than she had planned. When she returned to work, she was fired.
“I was confused. I could not make sense of what was going on in my life and had no one to run to,” Mwikali says. “My own mother asked me to only show up at her home with the two ‘normal’ children.”
Globally, cerebral palsy affects around 1.5 and 4 out of every 1,000 live births. There are no official statistics on the prevalence of cerebral palsy in Kenya, but some experts estimate that about three in every 100 children in the country currently live with the condition. Cerebral palsy causes impaired and involuntary movement, can affect ability to swallow, speak and control eye movements and can sometimes be accompanied by intellectual disability, blindness or deafness.
A 2016 study by the Orion Foundation, a nonprofit supporting people with special needs, indicates that 91 percent of caregivers for people living with the condition in Kenya are mothers, and most have to quit their jobs in order to provide that care.
The study also says 44 percent of marriages are negatively affected by the diagnosis of cerebral palsy in a child and in seven percent of those cases, the father walks out.
For many, the problem stems from lack of knowledge about cerebral palsy and lack of support for families. Only 14 percent of the general public are aware of cerebral palsy, the Orion Foundation survey found. Some consider the condition to be a bad omen or the result of a curse, while there are few institutions Kenya able to provide specialized care and education for children with cerebral palsy.
The Cerebral Palsy Society of Kenya (CPSK) helps around 500 people by providing support, therapy and rehabilitation. After Mwikali lost her job, she began working at CPSK as a cleaner – in return, her daughter gets free therapy through the clinic.
“Even though I don’t have any money left over, I am able to pay for my house and food for me and Njoki,” Mwikali says.
One of CPSK’s aims is to provide children with cerebral palsy with the education and skills they need to support themselves once they are old enough. Since the society launched in 1994, some of the children who have gone through its rehabilitation program are now studying at university, and one is training to be a social worker at the society’s clinic.
George Kakala, chairman of the CPSK, says there is a need to create awareness among the public about the condition, and to achieve that, the country needs to put to work the policies it has passed to protect and promote the rights of people with disabilities. The Persons with Disability Act, 2003 stipulates that children and other persons with disabilities have a right to education, health and other amenities. Though the act also prohibits discrimination against people with disabilities by employers, it does nothing to protect caregivers who are fired when they have to dedicate more time to their disabled children.
“As a country we are very good at passing legislation, but the implementation has been the challenge,” Kakala says. As part of its awareness-raising goals, the society plans to roll out programs targeting men, to educate them about the condition and stop them from abandoning their families.
But even with the help she gets from CPSK, Mary Mwikali still struggles to earn a living while also caring for her daughter. She is calling for the government to do more to ease the financial burden for women who have to leave their jobs to look after their disabled family members.
“I would appeal to the government to consider parents of children with cerebral palsy who are providing care for them,” she says. “The children cannot talk nor fend for themselves and need more care compared to many persons with other disabilities.”