TWO AFRICAN teenagers are in the throes of a heated and rather public row. “Look at me!” demands the boy. “I say, look at me. You think I go to school but — NO!” “Oh, stop!” scolds the girl. “Don’t bother me when I’m busy taking your non-disabled brothers and sisters to school. Look at you! You don’t need to go to school. You are disabled and after all you can write your name.”
“But I can’t even write that properly,” protests the boy. “Please, PLEASE take me to school. For me education is a dream, and these days disabled and non-disabled children go to school together.”
The boy, Guscon Opar, who’s unusually small for his l5 years, has a hunched back and a large handsome face. The girl, Joyce Atieno, 12, is also small and strikingly beautiful, with huge soulful eyes. It’s not until she walks away with an odd lolloping gait that you notice that one of her legs is half the length of the other.
Guscon and Joyce are reciting a poem about their experiences as disabled children. Their performance, which pulsates with a goose-pimpleinducing sense of experienced anger and rejection, is attentively watched by an audience of African children, many of whom wear callipers or huge polio-type boots, or lean on crutches or walking sticks.
At its climax the children cheer, then everybody begins singing exquisitely — a hymn, complete with dance and descants, about how difficult life is when you’re disabled and how, hopefully, Jesus will help.
We are in Kisumu, in western Kenya, near Lake Victoria, with Leonard Cheshire, the British-based disability charity. It has invited us to see some of its primary schools, which are part of its pioneering inclusive-education project for disabled and able-bodied children to learn and play together.
Guscon and Joyce are two out of a tiny number of disabled children actually in school. And their poem, a dialogue between an able-bodied mother and her disabled son, reflects the experiences of their lives. It was hailed in Nairobi when they performed it at an international gathering of the charity.
Watching it now, in the glow of the late afternoon sun, you wish Guscon and Joyce could be flown immediately to Gleneagles to perform at this week’s G8. Perhaps then, the politicians, supposedly set on solving Africa’s problems, might be reminded of the children they appear to have forgotten — those who are disabled.
For all of G8’s best intentions, one of the most important Millennium Development Goals made at the UN in 2000 by 189 nations — that every African child should be in school by 2015 — cannot be achieved. One in every ten children in Kenya, and in most African countries, is disabled, and 98 per cent of those children are not in any kind of school. The reasons for this are startling and include the very practical: the difficulty of transporting physically disabled children to school over rural terrain; catering for them in schools without facilities such as ramps; and the lack of specially adapted lavatories.
Many disabled children told me how they used to neither eat nor drink at school because of the ordeal of the traditional African latrines. “No one thinks about what’s hidden behind closed doors,” says Orpa Ogot, Leonard Cheshire’s Kisumu education liaison officer.
But what really stops disabled children being at school are attitudes such as that of the mother in the poem. Disabled children, it’s often felt, don’t need or merit being educated because they are something less than human.
According to African tradition, disability is a curse, caused by terrible wrongdoing, a punishment from God for bad deeds. In rural communities a disabled child can be feared like an evil spirit. “Parents are ashamed to produce a disabled child,” Ogot says. “So the child is hidden away at home, isolated, even abused.” Take the formidably intelligent Guscon, whose earliest memories are of being ignored or laughed at: “I was made to feel bad as a child,” he says. “Other children would call me a cow because of my hunched back. My parents were ashamed of me so they forced me to stay at home. They made me feel a burden.”
When Guscon was l2, an uncle told his parents about the Leonard Cheshire homes, where he was sent and where he sped through several years of learning until he graduated to the inclusive school. He still resents how his family treated him.
“I didn’t feel loved as a child,” he says, “and when you are not loved as a child some inner part of you does not grow.”
Joyce Atieno recalls children whispering and pointing at “that peculiar girl. I used to be ashamed of being different,” she says. “Now I’m sure that education is the only thing which will really make my life better.”
Joyce was born with her disability, but 80 per cent of Africa’s disabled become that way through disease, by accident, or as a result of conflict.
The Kiswahili word for disabled is kiwete — part of the object class of nouns, a thing, a diminutive, not a human being. In Africa the grammar of disability is often corrosive, which is why Leonard Cheshire’s project is about a fundamental change in the attitudes of an entire community towards disability.
The Mogare brothers know only too well the destructive effect of the disability stigma. Finley Mogare, 10, hurls himself furiously around classrooms and the football pitch, with the aid of a calliper, a crutch and an iron-willed determination. He’s class prefect, a stickler for tidiness.
Finley and his brother Wilfred, who has an artificial leg, grew up in rural southwest Kenya. A few years ago, not long after their sister was born with severe sight problems, their neighbours decided that was enough. Three disabled Mogare children out of five was interpreted as a curse on the community. So their father was chased out of their village. No one knows what happened to him.
Nowhere is the stigma of disability so pernicious as in Africa, and nowhere is it so easy to become disabled. Horrible accidents; lack of immunisation against polio or measles and similar diseases; inadequate facilities for difficult births; malaria in areas where people can’t afford mosquito nets or medical help if their children contract the potentially fatal and disabling cerebral malaria — all conspire to make African children more vulnerable than most.
There’s Sean Odemba, the school’s crutch-wielding star football player, who contracted polio as a child; John Kititso, who is autistic and epileptic because the cerebral malaria he caught at 2 wasn’t treated properly. Alice Awino was called a burden by her father when she was born so different from any of her 11 siblings. In Britain she would be called a Down’s child. Because Alice , now 14, wasn’t given any physiotherapy, she has to be carried everywhere.
Before children such as Saitoti Onyango beg an attending his school, the head teacher, Henry Odwar, was opposed to inclusive education, and argued with Leonard Cheshire’s team that it would be too difficult to achieve. “But I admit I was wrong,” he says. Yet he knows that the most profound change must be in the minds and hearts of local people.
But old stigmas die hard. One teacher who took part in Leonard Cheshire’s two-year teacher training programme (which currently has 20 teachers enrolled) failed to make that mental leap. Recently she told the team that although she now sees that disabled children can learn, she admits: “I still cross myself when a disabled child comes into my class.”
Other teachers regret how they used to treat disabled children. “We’d call them names such as ‘imbecile’ and ‘idiot’,” says Mary Apondo, who instructs nursery teachers.
“We thought that disability meant inability. Now we know that disabled children are often very talented. Even our sympathy was a form of neglect.Disabled children need opportunity, not sympathy.”
Shem Odemba, Oriang’s football star, who specialises in a Beckham kick cleverly negotiated with his polio boot, relates how his family used to leave him at home alone, without crutches, next to a tin.
“It stank and it was humiliating,” he says. “I can’t ever forget that. When I have children I’ll make sure they go to school and I’ll love them no matter what disease they get.”
Just before we leave Leonard Cheshire’s project, Guscon says he has something important to ask. “Do you have children like us in England?” he asks. “What do they do? I think if we could play disabled English children at football that might really help us to see what is possible.”
- To donate to Leonard Cheshire contact : 0845 6065050; e-mail: supporter@lc-uk.org; or Leonard Cheshire, Freepost SW5925, London SW1P 4YY
SAITOTI, THE BOY WITH A BURNING DESIRE TO LIVE AND LEARN
SAITOTI ONYANGO was born the premature survivor of twins and, says his mother, had measles at the age of 2, which reduced him to a tiny, frail, blind, whimpering bundle. Now l7, Saitoti has spent most of his life hidden away. Orpa Ogot, the education liaison officer, had heard rumours about a monkey-like creature who walked on all fours and made strange whimpering noises. What she found when she walked into his home was a tiny, wizened boy, with damaged sight and unable to speak but who was in no sense some deranged, feral child. Just the opposite. Saitoti’s spirit, his desire to live and to learn like his siblings, meant that he’d taught himself to copy letters of the alphabet and to weave exquisite little baskets. No one knows how.
At their first meeting Orpa Ogot asked Saitoti to copy down her telephone number into a little notebook. He did so perfectly. Today, on every page of this notebook, clearly his most treasured possession, is written Orpa Ogot’s mobile phone number, like a password to human status.
When you visit Saitori’s house he “walks” on rubber flip-flops tied to his knees and ignores his mother and older siblings. Instead, he communicates through his younger siblings, Juliet, 7, and Clifford, 8, in a peculiar and private language of sighs and signs and smiles.
Saitoti’s mother insists that Saitoti was born “normal” so, she says, there’s no reason why she should feel “bad” about what’s happened to him. After all, it was measles that caused his terrible health problems.
Orpa Ogot and Henry Orpe, Saitoti’s head teacher, have pieced together a different scenario. They suspect that while Saitoti may have had measles, which affected his eyesight, he was taken to hospital with polio. When Saitoti didn’t respond to treatment his parents took him home, partly because of the cost but mostly because of the stigma of his polio.
“His parents felt ashamed that they’d had such a child,” Orpe says. “In Africa when something strange happens like polio attacks, we feel it is a curse. You’d think that Saitoti’s father should have known better for he is a deputy head teacher.” When Saitoti first came to Orpe’s school more than a year ago, the other children were afraid of this strange child. But quickly they warmed to the boy.
Because his has been such a difficult journey, over muddy, rocky terrain, a rota of three teenage boys carry him to and from school, piggyback style, every day. On his arrival into school Saitoti is cheered by the other children, then regally transferred to his wheelchair.
Now he’s been rechristened Professor Saitoti, and he cries on the days when it’s too muddy for him to be carried to school.
For Saitoti, painstakingly copying a sentence from the blackboard, school is the place where he feels safe, where he longs to be.
