Friday, November 5, 2010

Parents in Kenya struggle to provide a good life for their disabled children in the face of societal shunning

From Reportage Online, the Magazine of the Australian Centre for Independent Journalism:

In Kenya, families with a disabled child are shunned from their village, yet more than half a million children have a disability. Alessandra Bergamin reports.

Gichagi, in the southwest of Nairobi in Kenya, is a site of widespread disease and poverty, locking the community into slum life.

Seated modestly on a small table, as there are not enough chairs, a woman quietly introduces herself as Esther Tingese.

She is not the traditionally dressed Maasai woman depicted on postcards, but the determination in her eyes and the strength of her rounded body are reminiscent of these capable tribeswomen.

Three of her four children are disabled.

It is estimated that 800,000 Kenyan children under 17 have a disability.

These statistics however, do not provide an accurate picture as most children are kept indoors because a disabled child is viewed as a curse that brings shame to the family.

This was particularly difficult for Esther coming from a traditional Masaai tribe.

As a tribe that prides itself on physical competence, disability is seen as a punishment from ancestors for moral misconduct.

Esther’s second child Pauline was born with Down syndrome.

“[My tribe] saw it as bad luck…and tried many remedies but they did not work,” she says.

Following the birth of her third child, Emmanuel, her first born with cerebral palsy, the family was shunned from their village with the tribe considering the children to be a misfortune.

“My husband still comes back occasionally, but whenever he does he’s always drunk and will only sometimes bring money.”

“To me, I do not have a husband.”

With no support, except from neighbours and friends who try to share the little food they have, Esther is struggling to scrape by.

“I sometimes work and wash clothes but it is hard because people don’t trust that I will do a good job because of the children.”

Pauline, her second born, is sponsored to board at a special school called ‘Star Disability’ and only comes home during the holidays.

The youngest two, Emmanuel and Louise, who Esther is forced to leave home alone when she finds work, both suffer from varying degrees of cerebral palsy.

“Emmanuel cannot walk,” she says, picking up the little boy from the couch while watching the other peek curiously through the curtained door.

“Louise walks but she has weak legs.”

Due to a lack of therapy and schooling facilities in Kenya, most disabled children never receive any kind of therapy.

Until recently, none of the existing centres catered specifically to children with cerebral palsy.

A few kilometres from the town Ngong is the first centre for children with the condition.

Opening early last year, the Mauryne Special Unit (MSU) was born from the Muindi family’s struggle to find therapy and schooling for their daughter with cerebral palsy, Mauryne.

“There are very few therapy and education centres in our country and the ones that are available are very expensive,” says the founder of MSU, Innocent Muindi.

“So we provide free special education and therapy for these children.”

Esther began taking Emmanuel and Louise to the centre when it opened in January.

Although it is free, the unstable terrain and lack of transport services makes it difficult for her to take them both daily.

“I can only carry one,” she says, referring to the ‘kanga’ she uses to tie the child on her back.

“…and it takes me one hour to walk.”

As Muindi acknowledges, Esther is not alone.

“The parents have a really difficult time because of the distance between the centre and where they are living,” he says.

“If we had more funding, one of the things we’d do first is provide transport…more children would be able to access the centre.”

Joyce Njeri walks a similar route to Esther each day, carrying her grandson Daniel down the pot-holed hills and dusty roads to MSU.

After her daughter’s death, Joyce became Daniel’s sole carer.

With no husband and no income however, this is no easy feat.

“His father pays for rent sometimes,” she says, referring to the 800 Kenyan Shillings she pays per month, which is equivalent to 14 Australian Dollars.

“But he lives in another village near Nairobi.”

Muindi says that she is the most faithful visitor to the centre.

“She has never missed a day and tries to encourage others to keep coming,” he says.

Watching Joyce lovingly cradle her grandson on her lap, almost passing for his biological mother, it is easy to forget that age will inevitably take its toll.

“I fear that when I get older, his father may marry another woman who will mistreat him,” she says, her eyes filled with sadness.

“I don’t know. I don’t know about the future.”

For parents like Joyce and Esther, the emotional support group at MSU is the only way they can share their fears and experiences without prejudice from the community.

Innocent remains hopeful that the stigma surrounding disabled children will change, through the community open days and MSU’s concurrent nursery classes for non-disabled children.

“We believe that it is these children, in the baby class, that will grow, learning and appreciating the special children at the centre, and they will see that this is just a decision of nature and a sickness that can affect anybody,” he says.

“We are creating a generation that will accept each other.”