In Kenya, disabled people struggle to survive

From CNN:

GATANGA, Kenya -- "Even if it is difficult, God can do anything," says Eudias Wambui, cradling her 17-year-old son Kennedy."There is nothing difficult in the eyes of God."

But I cannot help thinking that God somehow missed Eudias and Kennedy. Their lives are constant struggle.

On a lush hillside in Gatanga, Kenya, Kennedy thrashes in their gloomy wooden shack. He kicks his legs, throws out his arms, and screeches, his red wheelchair propped up against the wall. He is trapped in his flailing limbs.

Still, Eudias is determined to give him food. She grabs handfuls of bread, and pushes it down his throat, sometimes dipping the bread in juice to get it down more easily. At any moment it seems he might choke.

Kennedy can't speak, or give comprehensible hand signals, walk, or even crawl. But Eudias knows when he needs to eat or drink.

Kennedy was born with jaundice, but the doctors at the hospital missed the telltale signs. A physician noticed the following day, but it was too late. The doctors say the jaundice may have resulted in cerebral palsy.

There is no cure for cerebral palsy; an umbrella term given to a wide range of physical and neurological afflictions, but a team of doctors, therapists, and social workers is recommended.

Perhaps in Europe or the U.S. you could get it, but Eudias didn't get a team and their repeated trips to the hospital ended without any help at all.

"I keep on going, going, I have gone many times. I am tired so I am waiting for the Lord to come," she says. "He is suffering, he is suffering, the time he is here, he is suffering a lot."

When Kennedy was a boy, Eudias' husband left, leaving her to support Kennedy alone.

She has been wary about asking for help. Eudias believes that strangers are more likely to harm Kennedy than help.

"I fear that there is naughty people out there," she says, "or men who can come and rape him, so I fear."

That fear drives Eudias to lock up Kennedy whenever she her home. You can hear his shouts on the path leading to their shack. It is rotting and rain comes straight through the roof, she says.

"This house is already falling apart, and therefore, I'd be very happy if I see Kennedy be treated or taken somewhere, where he's not suffering."

But where could Kennedy go?

There are scores of private hospitals and clinics in nearby Nairobi and qualified doctors and occupational therapists at public hospitals. But it all takes money that Eudias just doesn't have.

To survive she depends on the occasional support of well-wishers and works as a kindergarten teacher at a nearby church. But the money she earns isn't enough to send Kennedy for quality medical care.

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The Kenyan government says that mental health is a high priority, but that is doesn't have the resources to help everyone.

"It really does trouble us, especially when some of the stories come in the press and the papers and we don't know about them," says Anyang Nyong'o, the Medical Services Minister, "It really is troubling and some of them are really painful because you find kids who have suffered for very long."

When we first meet Kennedy, it is on an intervention with the Kenya Society for the Mentally Handicapped (KSMH), one of the few groups working to help families like theirs.

They arrange for Kennedy and Eudias to travel to their office in Nairobi.

They must come by public transport. Eudias tells me that often they are thrown off the Matatus, Kenya's ubiquitous mini-bus taxis, Kennedy's 'difference' scares people, she says.

But they brave the stigma to travel the arduous journey into town, Kennedy strapped like a baby to Eudias' back.

Kennedy gets a thorough assessment.

"Can Kennedy speak?" asks the therapist.

"No," says Eudias.

"Can you understand him?"

"Yes, I understand him."

Kennedy is carried into another room for an E.E.G. test, that could help to assess his needs.

But the cerebral palsy and the stressful trip call for a sedative to help calm Kennedy's brain waves. They can't do an accurate test without it. But they need a qualified nurse for that, which they don't have. So KSMH refers Kennedy to Mathare hospital on the other side of town.

But Eudias can't afford the $12 an E.E.G. would cost there, so they leave the capital.

The KSMH will be able to give Eudias and Kennedy some modest help of food and a bit of money. But they are overwhelmed with cases like this. They say they can't possible support all the families they hear about.

And the Kenyan government, too, concedes that there are insufficient resources for even the obvious needs. But Medical Services Minister Anyang Nyong'o says the problem may go far beyond the obvious.

"I don't think we have the proper institutional capacity at the moment," says Nyong'o. "We have not been able to diagnose the extent to which this problem exists, in spite of the censuses we take. I think that our data [on the extent of need] is reasonably inaccurate or incomplete."

"[Mental health care] is definitely starved of resources and that is not because we want to intentionally starve mental health, that is because the resource base as we have for running health services is very narrow."

"You don't have enough money?" I ask.

"We don't have enough money," Nyong'o sighs.

On our last day of shooting, the crew visits Eudias and Kennedy as she is making lunch. Usually, Kennedy and Eudias would only eat rice and local spinach, but she has wanted to give her guests a special treat. And she sings hymns as she peels potatoes.

Kennedy lies slumped on his wheelchair in the sun.

Sometimes she can only bring him out once a month. It takes her 20 minutes just to bring him out of his bed by herself, but it is worth it. She says sunlight is one of his few pleasures.

She is happy that we are there, but she knows that they have always struggled alone.

Eudias only hears rumors of help.

"It seems as if we are forgotten, because I hear there is help for these types of children, but I have never seen that help," she says. "There is money which is sent and many things like that. But I just hear about it. I have never seen that help."

If the strongest bond is between mother and child, then the bond between Eudias Wambui and her son Kennedy is stronger still.