By Arjun Kohli
This story was published by Reuters in May 2006.
KIKUYU, Kenya (Reuters) – Maria Wangari winces in fright as a team of young men approach her quarry in rural Kenya with a bag of cheap dynamite.
Two of her sons — including her youngest David, 19, who has Down’s Syndrome — have spent a week manually drilling a nine-foot (almost three-meter) hole into the rock face of a dry riverbed at the bottom of her small farm.
Protective but also eager to give him responsibilities, she instinctively clutches David to shield him from the blast.
An estimated 30,000 people in Kenya have Down’s Syndrome, a genetic condition caused by the presence of an extra chromosome and resulting in differing degrees of learning disability.
As elsewhere in Africa, there is little to alleviate the burdens they face. Many Down’s Syndrome cases in Kenya do not get diagnosed, and the condition is often associated with a curse.
Each day, David leaves his house in the Kikuyu area north of Nairobi with a steel hammer and shaft to drill Kogotho, the local rock used in road-building. Once a month, he and his brother have enough rock to call for a truck that will pay them 3,000 shillings ($42) for four tones of finely chiseled stone.
David works hard for little, but his situation is better than most. By encouraging him to practice movements needed to drill, his brother has enabled David to become part of the family’s day-to-day work.
Many families in Kenya instead lock their children away at home in shame. Stories of abuse abound in the local press. One father kept his son in a dog kennel.
“We thought that in Africa the rate of Down’s was much lower than in other countries, say in Europe or America, and certainly that was the common feeling when I first started dealing with it about 40 years ago,” said Colin Forbes, a pediatrician and university lecturer in Nairobi.
“And then what we started to realize was that we were missing Down’s Syndrome here because Down’s Syndrome children in the rural areas were hidden.”
Victims of Superstition
A government doctor working on Kenya’s Indian Ocean coast said many parents will not bring their children to hospital for counseling or therapy.
“They prefer not to expose that child,” said the doctor, who asked not to be named. “They associate it (Down’s Syndrome) with a curse. So they would rather keep the child at home.”
In the coastal area, less than 40 percent of children are born in hospitals, he said, meaning children with Down’s Syndrome may not be diagnosed until much later in life.
“Early intervention is vital if the child is going to survive and exist in the everyday world,” said Amar Panesar, a volunteer teacher for disabled children, who in 2004 founded the Down’s Syndrome Society of Kenya.
Katherine Wanjiku, 22, has Down’s Syndrome and, after school in the town of Thika, goes to the market to help her elder sister sift grain for wholesale.
“If they are doing what other people are doing, they will be part and parcel of the community,” said Katherine’s sister Lucy Wanjeri as she stacked sacks of grain.
“They will tend to look normal to the people around them. People have stopped staring at Katherine, they see Katherine as one of them, they do not see any difference and it is very OK.”
New Consciousness?
At the last World Down’s Syndrome Congress in Singapore in 2004, only two delegates appeared from Africa out of a total 28 countries from across the globe.
That was before Kenya’s Down’s Syndrome Society was founded to lobby for medical attention and education.
Now President Mwai Kibaki’s government has initiated a policy of “inclusive education” that means children with disabilities can study alongside others under the country’s free education program.
But not every government school has a special needs teacher. So families often have to move closer to schools with such facilities, like Katherine Wanjiku’s school — St Patrick’s in Thika.
Peter Ngugi, the headmaster, received an extra 153,000 shillings ($2,150) last year to facilitate teaching for 28 children with Down’s and other special needs.
“There are some parents who can’t bring their children to the special unit because they believe the problem the children have is sort of being bewitched,” said Ngugi.
But experts say there is a new consciousness beginning to develop in Kenya and Africa in general, with more attention paid to Down’s Syndrome and disabilities by government and media.
Kenya now boasts one of the largest teacher-training centers for special education in the region, with 7,400 teachers enrolled for a correspondence course on special needs education, as well as the 200 in-house students.
Proposals to change Kenya’s constitution include clauses that safeguard employment rights for people with disabilities.
And in the local Swahili, the word “ulemavu” (disability) is fast replacing “wasiojiweza” (handicapped) — a term considered more pejorative.