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Kwale lepers still face stigma as government remains lax

Sunday September 22 2019

Leprosy

Victims of leprosy chat at Tumbe village in Kwale County on September 7, 2019. They decry stigmatisation. PHOTO | WACHIRA MWANGI | NATION MEDIA GROUP 

EUNICE MURATHE
By EUNICE MURATHE
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FADHILI FREDRICK
By FADHILI FREDRICK
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A colony of leprosy victims who either abandoned their homes or were sent away by their families nestles in Msambweni, Kwale County.

Nearly all of Tumbe village residents are now elderly, living with disability and burdened by biting poverty and lingering discrimination.

The impoverished village was once home to a “leper colony”.

In the 1960s, lepers sought refuge in the village alongside a medical centre that was trying to eradicate the disease.

Later, well-wishers built stone-walled houses where those diagnosed with the disease would live as they sought treatment.

Leprosy is a chronic infectious disease that mainly affects the skin, the peripheral nerves, mucosal surface of the upper respiratory tract and the eyes.

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Although the residents are now cured, many of them have been left permanently disfigured.

DISCRIMINATION

They chose to stay put because they were worried about social stigma, or that their families would refuse to take them back due to ignorance, or it would be difficult to find conventional work.

In this village, hardships persist, even though the disease no longer poses the threat it once did.

In Kenya, leprosy is among the 15 neglected tropical diseases. The country was declared leprosy-free in 1989 after reporting less than one case in 10,000 persons.

Salim Ali Pato tries not to think about the life that he would have had.

What is the point, he says, of dwelling on the disease that robbed him of a chance to make more out of his life? Pato was 16 years old when he was diagnosed with leprosy.

Sitting on a handmade makuti mat, he remembers the discrimination he faced.

He left his home in Mrima village, Dzombo ward in Lunga Lunga Sub-County for the camp in 1966.

He just could not stand being ridiculed by family members due to the disease that has for long carried a great deal of social stigma.

NO FUTURE

At its peak, the village was home to 100 residents who were put on medication that cured them of the disease.

Pato and others would have gone back home, but he did not, due to various reasons. Stigmatisation meant life outside Tumbe would be difficult.

He is now the village chairman representing families that had been affected by the disease.

He says on the streets of major towns, lepers dot obscure corners with their deformities for all to see.

For this reason, society relegates lepers to the fringes. “Even those who are cured shoulder a heavy emotional burden and are treated as outcasts,” he says.

Their children also have to leave the village once they hit 18. “We are worried as parents because, as a rule here, when a child attains the age of 18, he or she is supposed to leave the camp and fend for themselves.

"Some of the children barely have jobs and family that they can go back to. It feels bad when you know your child might be homeless after they leave the village,” he says.

LAND

He urges the government to give them alternative land where their children and grandchildren can settle.

“We request for permanent areas for the residents. We are worried our children will suffer because we don’t have our own homes. What kind of life will our children live if we don’t have registered land of our own?” asks Mr Pato

Dzame Ndoro shares the same pain. She says being separated from their children is a way of isolating them and, to make matters worse, some of the children lack secondary education and some who have are jobless.

Ndoro came to the camp after being ridiculed by members of her family back in Burani, Matuga Sub-County. However, they still encounter other challenges.

She said to make ends meet, she has to make trips to Mombasa and Ukunda to beg before returning to the leper colony in Tumbe.

“We treat one another well. The money I get from begging helps me buy food and other necessities. We are like a family here,” says Ndoro.

Besides, the residents do not benefit from government programmes meant to help the disadvantaged.

Jimmy Charo, who is partially blind, found himself at the camp after losing his job as a telephone operator.

SOCIAL BENEFITS

Charo decried the government’s failure to take care of the survivors, though it has now created room for well-wishers to step in.

“Most of us have not benefited from the special funds for people living with disabilities and that’s the reason families have resorted to begging,” he says.

Charo says they have been locked out of many other social benefits, adding that it has been difficult to get special identification cards for people with disabilities in the county.

“There is too much bureaucracy. Vetting of the people in this village was done in 2015, but they are yet to get special identification cards four years later, and this still puzzles us. We have visited so many offices but it does not help,” he said.

However, the National Council for Persons With Disabilities (NCPWD) told the Sunday Nation that they have been encountering challenges with registering people with disabilities.

NCPWD County Coordinator Joan Chimera says they are working to ensure people living with disabilities are registered and issued with identity cards.

“We acknowledge there have been numerous challenges, but we are working to ensure all persons with disabilities in the county are registered so that they can benefit from the government programmes,” she says.

BEGGERS

But there is still a lot of work to be done. The villagers are mired in poverty as they cannot engage in meaningful income-earning activities.

One cannot farm in the village and therefore they resort to crushing stones, which earns them a little income.

Nadzua Chiti, a resident, says most families survive by begging on the streets of Ukunda and Mombasa. When what they beg is not enough, they do menial jobs.

In the compound hosting more than 18 families are heaps of crushed stones waiting for customers to buy at as low as Sh70 a bucket.

It’s backbreaking work for poor rewards: each family only sells a bucket or two a day, Chiti explains. “It is a struggle to crush those stones.”