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2018-10-29 10:51:01 Voices

The causes and pathology of leprosy — also known as Hansen’s disease — were for centuries shrouded in mystery, superstition, and fear. A bacterial infection that can cause inflammation of the nerves, skin, and eyes, leprosy was long thought to be both incurable and highly contagious. Such is the stigma surrounding the disease that even the very word “leper” conjures up images of exclusion and isolation, of people ravaged by disease languishing in colonies at the very edges of society.

Such prejudices — and the remote settlements they spawned — can sometimes seem like relics of a more medically primitive era. After all, the advent and widespread application of multidrug therapy a few decades ago finally gave those diagnosed with leprosy access to a quick and effective cure. Yet no drug can restore lost limbs or remove scar tissue, much less undo the damage wrought by centuries of discrimination. As a result, leper colonies continue to fulfill an important function in many countries. As late as 2011, for example, China’s national network of leprosy clinics, hospitals, and so-called leprosy villages were home to a total population of about 20,000.

However, this number is likely to shrink in the coming years, as more leprosy villages are abandoned or merged and their longtime residents pass away. For decades, social stigma and a sense of fear combined to isolate and marginalize thousands of Chinese living with leprosy. Now may be our last chance to right this wrong and finally give these individuals an opportunity to have their voices heard. That is why the organization I work for, the Youyingji Documentary Studio, has spent the past four years filming and documenting the stories of the remaining leprosy village residents. To date, we have conducted interviews with 60 leprosy survivors from 20 leprosy villages located across the southern province of Guangdong.

Shortly after the People’s Republic of China was founded in 1949, the government began investing in new public health programs, including some targeted at treating and preventing leprosy. By the end of 1980, there were 1,199 leprosy hospitals, prevention stations, and villages throughout the country.

During the 1960s, lesions and other symptoms of the disease frequently went untreated, and the villagers suffered through periodic food shortages.

Not every resident of these colonies — which were generally located on remote mountains or islands — was there of their own free will, however, and conditions varied widely between sites. Typically, the state provided residents with leprosy drugs free of charge, but otherwise all those able to work for their keep were expected to do so, with some of the larger leprosy villages even building and operating candy or brick factories. At the same time, medical supplies and trained practitioners were often in short supply. So was food, especially during periods of upheaval and famine, such as those in the 1960s. As a result, lesions and other symptoms of the disease frequently went untreated, and the villagers suffered through periodic food shortages.

After 1982, when multidrug therapy came into common use, things began to change for the better. The treatment effectively obviated the need for the long-term isolation of leprosy villages. Yet residual effects of the disease, such as facial and limb deformities, combined with the superstitious belief that leprosy was the result of either bad conduct in a previous life or sexual promiscuity in the current one, continued to mark former patients, despite their having been cured. For many of them, it was common — and remains so today, especially among longtime residents — to choose to stay in leprosy villages, even after their recovery.

One of my interview subjects — an 87-year-old man surnamed Zhao — exemplifies this mindset. Zhao told me he was born into a wealthy family in the southern metropolis of Guangzhou. Diagnosed with leprosy when he was 15 years old, Zhao says the disease went into remission for about 20 years before recurring when he was 33. Eventually, Zhao’s face became so red and swollen that he decided to check into the Si’an Leprosy Hospital, which is located on an island off the coast of Dongguan, a nearby city. His brother accompanied him on the boat ride to the island. When the pair bought their tickets, they were told they would need to pay for all five of the boat’s seats because no other passengers would dare sit near a leper.

Zhao has lived on the island ever since. I once asked him why he never got married. There had been women who liked him, he had told me, both in his hometown before his disease recurred and later in the leprosy village. “During the Maoist period, we weren’t allowed to marry,” he replied. “And after, when it was permitted, I didn’t want to — it is hard for the children of lepers to find a spouse.”

A 65-year-old man surnamed Zhang, who grew up in the countryside outside the southern city of Maoming, knows these prejudices well. His parents died when he was young — he’s not sure exactly when — and he later contracted leprosy at the age of 12. Shortly afterward, his relatives loaded him onto a cart and took him to a leprosy village in Aotou, not far from Maoming. Aotou's facilities were far more basic than those at Si’an, and the village was in poor shape when Zhang arrived, with dozens of patients sleeping on straw mats laid out on the ground. There was not even a doctor — just an administrator in charge of distributing meals and medication.

Many attributed leprosy to poor karma or sexual promiscuity — and thus the victims themselves.

The early ‘60s were a time of widespread famine in China. During that period, many leprosy villages ran short of just about everything, from food to medicine. Many patients died: some from illness, some from starvation, and some from suicide. “At one leprosy hospital I stayed in, the patients had nicknamed the hill where the dead were buried ‘the five-story building’— because the bodies buried there were stacked five layers deep,” Zhang recalled.

Zhang’s leprosy was cured more than 40 years ago, and unlike Zhao, he has spent some of the time since then traveling through western Guangdong, stopping in various leprosy villages to farm, work, or just scrape by however he can. When he first got out of the hospital, he tried returning to Maoming, where he took up peanut farming. But the venture was short-lived: Not long after he arrived, the prejudices of nearby villagers — one of whom, upon seeing Zhang selling peanuts at the market, publicly told shoppers not to buy goods from him — ended up driving him away. After that, Zhang gave up trying to reintegrate into society, choosing instead to stay exclusively in leprosy villages.

It is stigma, not medical necessity, that has prevented these individuals from rejoining society. The writer Susan Sontag once said that when an illness is poorly understood, it is common for people to seek answers in superstition or traditional beliefs. In the case of leprosy, many blamed the disease on poor karma or sexual promiscuity — and thus the victims themselves.

Understanding the consequences of this attitude is important, since leprosy is not the only condition so stigmatized in China. In the 1990s, for example, the country’s health authorities categorized HIV as a sexually transmitted disease. Although there is a growing awareness in China that HIV can be transmitted in other ways, this early association of HIV with sex has caused many to believe that all those who are HIV-positive are sexually promiscuous and therefore deserve their affliction. This in turn has led to the marginalization of HIV patients throughout the country, despite the fact that many of them did not contract the virus from sexual activity.

The history of leprosy is one of isolation, discrimination, and expulsion. By recording and sharing patients’ stories, we hope to push people to reflect on the injustices we as a society have committed against those with leprosy and face up to the mistakes of the past. Only then can we be sure that we won’t make them again in the future.

Translator Matt Turner; editors: Lu Hua, Li Aiying, and Kilian O’Donnell

(Header image: Residents of a leprosy village pose for a photo in Leshan, Sichuan province, March 13, 2003. Peng Guoping/VCG)