Living in the Grave with the Dead

Jima, Ethiopia: Sister Tsigue Petros pulled the jeep to a stop behind Maryam Church at the entry to the cemetery, referred to derisively by the locals of this coffee-growing outpost as "Maryam Village." No gate adorned the graveyard's entrance; no sign marked the way. Only a well-trodden path offered evidence of the living on this sacred land otherwise reserved for the dead. Indeed, for the past twenty years, fifty-eight families had isolated themselves in Maryam Village rather than face the stigma of their disease, leprosy or Hansen's Disease, out in society.

Agitated vultures squawked from their perch in a skeleton-like tree above the graveyard, seemingly daring us to approach. They, like the feral dogs that snarled in the bushes along the trail, were on heightened alert. On this hallowed land where nothing about life comes easy, survival always comes first. Vultures, dogs, snakes, humans--all the graveyard's dwellers scavenged on equal terms for food, shelter, and territory. If any enjoyed the upper hand, it wasn't the humans.

For each of the 400 residents of Maryam Village, home was a leaky hut constructed from scrap metal, rags, cardboard, bamboo, and burlap. This patchwork of debris mish-mashed together with rope did little to deter animals or disease-carrying insects from calling it home, too. Unless, that is, the open, cracked tombs next door appealed to them more. Even the church's gravediggers, who often forced the dismantling of these huts to dig and bury the newly deceased, were the enemy.

"We are living on top of the dead bodies," Califa Badedu, a village elder of Maryam Village, told me--"above the dead and below the living. Half in the grave, half out." Sister Ayelech Gebeyehu--like Sister Tsigue, a nun in the Catholic order of the Daughters of Charity, and intimately aware of the situation--explained it more directly. "They are not even better than the dead who are under the ground."

This was not the first time I had witnessed victims of leprosy living in difficult conditions, and it likely won't be my last. Five years earlier, in 1998, I encountered my first "leper colony" while on assignment for a relief organization in Southeast Asia. I was instantly struck by their plight--the physical disfigurement, stigma, abandonment, loss of identity, and poverty. But I found myself equally inspired by their ability to endure and find purpose in a life so cursed with bad luck. Where did they find the courage to go on? I wondered.

More questions followed.

More than 10-million people in the world had suffered from leprosy in the past two decades, but where were they hiding? What, if anything, had changed in the past 2,000 years for these people who had been branded, since Biblical times, the most untouchable of the untouchables? Was there truth to the dark mythology surrounding their disease? And most important, were there lessons we should learn from their treatment and perseverance? Five years later, when

I made the transition professionally from relief work to photojournalism, humanizing the face of leprosy became my first long-term documentary project.

Since then, I have visited colonies in Vietnam, Thailand, Cuba, and India, which is home to nearly two-thirds of the world's leprosy-afflicted people, and debunked for myself a few myths along the way. Leprosy is not highly contagious, like tuberculosis. Disfigurement can be prevented if the disease is diagnosed early. And it can be cured with medicine. Yet while progress has been made, the stigma surrounding leprosy in many societies can still be as fierce as ever, which brings me back to Ethiopia.

In November of 2002, Seton Institute, a California-based aid organization, sent me to Ethiopia to document the health programs of the Daughters of Charity. Seton wanted to communicate to its donors the current living conditions of the poor in this stricken nation and show how the sisters were making a positive impact. AIDS, refugee camps, and malnutrition I expected, but not a two-day visit to a graveyard in some southwest Ethiopia backwater.

That said, it came as little surprise that the people of Maryam Village greeted my arrival with trepidation. Sister Tsigue had warned me. Outsiders making lofty promises had passed through these parts before, and it was starkly obvious from first sight that Maryam Village had not benefited one bit from the trouble.

This reality made Sister Tsigue's job considerably tougher, as she, too, had hopes of bringing dignity and a better quality of life to this community. She, and her predecessor, Sister Ayelech, had worked hard to gain Maryam Village's trust, and finally they were getting traction.

After more than 250 visits to the local municipality, the sisters had secured a plot of land on the outskirts of town. International donors at their request sponsored the construction of new adobe homes for sixty-four families. If all went according to plan, the residents of Maryam Village would soon leave their old haunts behind for good.

What is more, the sisters offered hope far beyond the tangibles of new land and new homes. Having successfully rehabilitated another local leprosy village called Ginjo, the sisters had a working model to follow for weaving Maryam Village back into the fabric of society.

At last check, their plan is on target. Electricity and a water-delivery system have been installed. Income-generating programs for women have commenced and a health clinic is operating once a week. The children, once shunned from public education, are attending school in nearby Ginjo, until their own kindergarten can be constructed next year after the rainy season. The leadership council elected by Maryam Village even voted to change its name. Now, at the entrance to their new community for all the world to see, a welcome sign proudly proclaims: Tulema Leprosy Village.

Lemieux '93, who earned an M.B.A. in 2001 at the University of California, Berkeley, is based in San Francisco.