Living On The Fringes

Kofi Gabriel Konr

When Anthony Adjavor bids farewell to cured patients at Ho Polyclinic, he knows some of them will return.

The clinic's assistant chief technical officer has been caring for patients who have suffered from leprosy throughout Ghana for more than 30 years, the last 19 of which have been spent in Ho.

While leprosy can be cured with highly effective multidrug treatments, the deformities it can leave behind mean patients often suffer its effects for the rest of their lives, facing hunger, disability, expulsion from families and communities, and stigma.

“Those with deformities, they go and then come back,” says Adjavor.  “We worry about those ones. We know the relatives at home won't accept them.”

Adjavor says patients often discover upon returning home that their families are afraid of them and their communities shun them.

So they return to the Ho Polyclinic in the Volta Region and set up dwellings in the surrounding areas, where Adjavor estimates about 120 cured patients live in six or seven so-called “leper colonies.”

For many, the after-effects of leprosy that prevented their re-integration into their communities also keep them from supporting themselves.

More than 40 former patients living in the outlying areas depend on the clinic for not only basic health care, but also food.

Yet the clinic doesn't receive any government funding to pay for the food it metes out to its most needy, providing one to three meals a day, depending on resources.

“That is our problem,” says Adjavor. “When there are no donations, we tell them that for two or three weeks, there is no food.”

During times of scarcity, some rely on donations of food, while others eek out their existence by growing gardens. But in Ho, where some have lost their limbs, it can be difficult for them to farm, says Adjavor.

“Though, some do farm on their knees,” he says.
In Schoonhoven, a village at the end of a narrow dirt track that branches off the main road near the Ho Polyclinic, Efo Kofi Kporfor does just that.

The father of two emerges from the trees and grass at the edge of a village, moving in a slow shuffle on his partial legs that are protected with rubber pads fashioned from tyres, pulling himself along with a hoe and a stick that have been cut down to accommodate his shortened stature.  

Kporfor is missing his left leg below the knee, while the right was left severely deformed by the disease he contracted in 1965.

He smiles warmly at the visitors traipsing across the sandy yard where chickens scratch the dust and fires smolder in the late-morning sun as a stern-faced young boy peers out from the porch of one of the identical buildings.

Hauling himself to sit on a low cement block, Kporfor smiles as he removes the rubber padding from his knees and reaches for the strips of dried grass he uses to make baskets, which he can then sell.

When Kporfor contracted the disease, he went to Cape Coast and later Ho for treatment. When he returned home, his family shunned and pitied him, he says.

“I felt very sad when I went home, and so I don't go there anymore,” Kporfor says through a translator.

The hospital usually provides Kporfor with one meal a day. When its stores are empty, he relies on his garden and his children to keep him from going hungry.

Others depend on donations from the community. Some former leprosy patients in Ho, Accra and Nkankyina in northern Ghana also receive between GH¢8 and GH¢15 monthly per household through the government's Livelihood Empowerment Against Poverty (LEAP) programme.

Malawina Aboe strides over to join Kporfor and his visitors donning lime-green flipflops and piling blue and gold clothes on her head. She wears large sunglasses, missing one lens, and a bright purple bead necklace.

Aboe says the clinic used to provide them three meals a day, but lately there's only been one.

“When people come and give us food, there's a lot. But when the people go, there's nothing to eat,” says Aboe. “When there is no food, we pray and hope God will direct people to come and give us food.”

As executive director of the Community Development Concern, Joycelyn Akorfa Dotse-Ochlich secured funds from the Japanese embassy in Accra to build a junior high school for children of leprosy sufferers in Ho.

About five years ago, she also contacted the Accra-based Lepers' Aid Committee, headed by Fr. Andrew Campbell, to start supporting the former patients with food and other relief supplies.

The Irish priest domiciled in Ghana, a long-time champion for cured lepers in the country, has been helping ever since.

Dotse-Ochlich, who is also the assembly member for Borsotoe electoral area, began to seek more funding when she realized many former leprosy patients were facing eviction by the owners of the land upon which they'd settled around the clinic.

A village in Holland – Schoonhoven – raised money to buy the land and build houses for former leprosy patients at the site where Kporfor, Aboe and about 40 others now live.

The Cured Lepers' Foundation, chaired by Dotse-Ochlich, continues to work to raise money for more buildings and services, such as a skills training centre, for those who live there.

“This is fundamental human rights, rights to food, rights to clothing, right to health, right to water,” says Dotse-Ochlich.  “Before we came in, they were forgotten, there was no hope for them, really. I want them to have dignity.”

Roughly 100 former patients still live in seven villages in the surrounding area, many waiting for their turn to move into Schoonhoven. For them, says Dotse-Ochlich, the struggles are even greater.  

“Most of them don't have food to eat,” she says.
Rose Korjovi is waiting for her chance to move to Schoonhoven. Currently, she lives at Amoevikope, barely a stone's throw away, in a modest mud hut with a thatch roof.

She became sick with leprosy when in middle school form one, and despite her father arranging a variety of treatments and operations with the hope of curing the disease; she was left with a painful, deformed left foot and lower leg.

The initial years were lonely, she says, as people with leprosy were forced away from their communities and families, who feared the disease would spread.

“It wasn't as it is today,” says Korjovi. “The moment you had it, you could not live among others. You had to leave before society pushed you out.”

Sitting in the sand in the shade of a tree in Amoevikope, Kofi Gabriel Konr says he's also waiting to get into Schoonhoven. He lives in Freetown, a village where only a few former leprosy patients remain after landowners began reclaiming their property, and he says he gets by.

“That is all I need, is to go there,” says Konr. “I feel lonely, that's why I want to go there. Loneliness is not good.”

Nelson Attito, the volunteer caretaker of the village, says three months have passed without any food coming from the clinic.

“Last June, one died here because of the food.”
Other residents are too disabled to eat, wash or go to the toilet unassisted, and must rely on volunteers like Attito to help, and donations to provide supplies needed to care for them.

“They are being neglected,” says Attito.
Michael Akpo is the assembly member for Wusu electoral area where Schoonhoven is located. He says the government must focus more attention on helping former leprosy patients.

“They are the most needy people in Ghana now,” says Akpo. “They do not have hands to work or feet to walk, but they still have stomachs to feed.”

He says government should ensure former patients get at least two square meals a day – and it must step in to help take care of the children in the community.

Like many children growing up in abject poverty, they are often excluded from school when their parents can't afford the meager – about GH¢18 a year – fees, or they are sent to school hungry.

The Freetown school in Ho where most of the children from former leprosy patient villages attend isn't included in the nationwide school feeding programme , when, according to Akpo, it should have been first on the list.

A deputy director responsible for social issues at the Ministry of Employment and Social Welfare says some former leprosy patients have been included in the LEAP programme since earlier this year.

Under the formula, a severely disabled person (which includes some leprosy survivors) receives GH¢8 monthly, generally paid out every second month, says Mawutor Ablo.

If more than one eligible person lives in the same household, they receive varying rates: GH¢10 for two people, GH¢12 for three people, and GH¢15 for four or more.

Currently, LEAP funds are going to about 30 patients at Weija Leprocarium in Accra, 100 in Ho and more than 160 at Nkankyina. More than 100 cured leprosy patients at Ankaful in Cape Coast have yet to benefit from the program, as do other populations in Ghana.

Those populations will be included in the future, says Ablo.

The money parceled out through LEAP isn't enough, Ablo says. Other government programmes aim to support those on LEAP through a variety of services such as seed distribution and skills training.

The unique challenges facing former leprosy patients do need to be addressed, says Ablo.

“It's a big issue that we need to look at,” he says. “We are not there yet. It's a process… I believe that we need to, at a national level, highlight the plight of these people. Government cannot do all alone.”

He stresses the need for more public education to reduce the stigma that keeps people who've had leprosy from returning to their families, and thus making them reliant on donors and government for subsistence.

“It's just that we are not doing it. Once we do it, I think it's good.”

From Sylvanus Nana Kumi and Jessica McDiarmid, Ho, Volta Region