Breath & Shadow

ESSAY

Stigma: You're Going to Like These People

by Robert Dodge

In Nathaniel Hawthorne's "The Scarlet Letter," Hester Prine was publicly condemned and her sentence was to wear a scarlet A for "adulterer" on her breast for as long as she remained in Salem, so that all would know of her deeds. Three hundred years later and half a world away, labeling and ostracism continued. Not in fiction and a rigidly religious society, but the very real world of Singapore.

The old grey–haired lady had a distant and dejected look as she recalled the clothes she had been given to wear in her younger days, "We had a white kebaya and red sarong. On the left side of our kebaya was sewn a red ring. And in the middle was the letter L —'leper'." Peggy Arazoo, like the Hester of fiction, was publicly branded as an outcast from society, an undesirable. But unlike Hester, her brand didn't come from the community's view of sin, but from fear and ignorance.

Peggy recently passed away and the labeled clothing is a thing of the past, but fear and ignorance remain ever present. I met Peggy in 1991 when I first visited Singapore's home for destitute recovered leprosy patients as the guest of a remarkable man, the jovial Fred Gibson. Fred was the son of a Ku Klux Klan member who had become a child runaway after his best friend was beaten to death. He became a champion of those treated unfairly and attended seminary with Martin Luther King, Jr. The ever–uplifting Fred was always on the side of any group that suffered from unequal treatment, regardless of the reason. I asked how he maintained such an attitude and he replied, "There's something golden and wonderful about every person." He added that you find it when you finally stop talking about them and welcome them.

In Singapore he came to the aid of victims of leprosy. He didn't mention until 16 years later that he had leprosy at the time he first brought me to visit the recovered patients. "You're going to like these people," he said, and he could not have been more accurate. He was convincing me to bring students from the expatriate school where I taught to visit the victims of the disease, since society and their families had abandoned them.

Singapore President, Devan Nair, supported him in his work with the leprosy patients and encouraged the residents to do their own social planning. They did, and when they rented a bus to Changi Airport to ride the moving walkways, Gibson received a call from the president. Worried that his green card was being cancelled, he heard, "Do you know what your lepers are up to now? I think it's fantastic."

I took the opportunity to bring visitors, in part because I have epilepsy and a recent survey had revealed a very strong stigma about epilepsy in Singapore. Like leprosy, stigmatized views of epilepsy date back to ancient times (Hammurabi's Law Code of 4000 years ago didn't allow marriage to a person with epilepsy) and were reinforced by religious views. Epilepsy victims, long thought demonic, have been considered either mentally ill or mentally retarded and in many places belief in demonic possession persists. With the eugenics movement early last century, thirty three states adopted laws to prevent those with "bad genes," including those with epilepsy, from having children by the forcible sterilization of over 60,000 Americans. In 1956, two years after the landmark Supreme Court decision, Brown v. Board of Education began breaking down the greatest barriers between race in America, four states still permitted institutionalization solely on the basis of diagnosis of seizure disorder and in eighteen states statutes remained in force which provided for eugenic sterilization of people with epilepsy to prevent them from reproducing. Until the 1970s, it was legal in most states to deny persons with seizures access to restaurants, movie theaters, recreational centers and other public accommodations. Only in 1980 did the last state in the US repeal its law forbidding marriage to a person with epilepsy. While black America had been struggling since Rosa Parks for a seat at the front of the bus, the disabled were hoping for a seat on the bus.

Leprosy's stigma was different. Around the world, the belief about this most ancient of diseases that sets it apart from other stigmas is that it is not only a disease of the bodies, but of the souls of its victims. It is mentioned in the Bible more than 50 times in eight different books. The biblical view spread worldwide with the spread of Christianity. There is dispute among scholars over what medical conditions fell under the label of the ancient Hebrew word tzaraat that came to be translated as "leprosy." There is no dispute that the word "leprosy" is what appears in the Bible and has been taken as a reference to the disfiguring Hansen's disease that people recognize. In the Old Testament leprosy is defined as a plague from God, and God said those who had it were to be outcasts and were "unclean." God also used leprosy as a punishment. In the New Testament, on the two occasions when Jesus helped lepers, he didn't heal them, he cleansed them. Outcasts, unclean, punishment — leprosy was a moral condition as much as an illness. Treatment by the Middle Ages in Europe required that lepers wear special clothes, ring bells or shake clappers to warn others of their approach, never wash hands or garments in springs or streams, never talk to people unless down wind from them and much more.

Many places in Asia and Africa have known it as "the big disease," because of the perceived damage not only to the body but to the soul of those it struck. On the Indian subcontinent it was sometimes known as, Maha rog, "the Great Disease." Indians often considered it a punishment for sins committed in a past life, and up to 1815, lepers were sometimes disposed of by being buried alive. What these beliefs add up to is a condition where the person is the disease and no more. When I asked an early volunteer who had been in the Leprosy Home between 1975 and 1990 whether she had ever seen a family member visit, she answered "No!" Our student group began weekly visits in 1992 and has continued to do so to the present.

The people we saw told us their stories, and we soon became friends. Many went through treatment when it was required by law that all with the condition be sent to the Leprosy Settlement, which was renamed Trafalgar Home. This asylum was a prison, surrounded by a high iron gate. There were 12 guards at the entrances, and punishment for bad behavior or unauthorized leave was severe. Nine small cells with bars, six on the men's side and three on the female's, were used for solitary confinement of offenders. Commitment could be a traumatic ordeal. "On Sunday, October 22, in 1933, my father brought me to the Leper Camp  . . . I was admitted to that horrible place. And I stood there and I said to myself, 'It's just like a living death,'" recalled Tan Geok Hong.

"A living death" — a frightening observation, and one that has described leprosy throughout the ages. In the Bible it is described as to "be as one dead," and in Medieval Europe the Mass of Separation, which was similar to a funeral for the living, was sometimes performed for those found to have leprosy. Tan Geok Hong converted to Christianity and took the name Dominic when he was confined. He came from a family with twin sisters and three brothers. Since entering the Leprosy Settlement in 1933 he has been in government institutions, and to the present day he has never been visited by a member of his family. He adds, "Because maybe I committed some sin somewhere during that time. But I won't believe all of that. The ones who got leprosy, we got fate, that's why we got this kind of disease. How did I get it? Once in a million. But that is a leper's world."

Leprosy affects peripheral nerves to varying degrees, and nerve damage sometimes leads to atrophy resulting from muscle weakness and deterioration. That can result in clawed fingers or 'drop foot' deformities. Recovered patient AhLee recalls, "I have ulcer and drop foot and the ankles of both feet ruptured and the doctors told me the best thing to do was to have both of your legs amputated, one at a time. So I had my first operation in 1959 and the second one followed in a few years. When I first came in here I already had some deformities on my hands. So eventually my fingers became more and more clawed, and also been wasted. Although they are claw, I can still make use of my fingers to do whatever I want, with difficulty and inconveniences." AhLee's mother visited him in 1948, the first year he was committed to the institution, but his family vanished from his life after that.

In all cases, the loss of sensation in the hands and feet can lead to ulceration and infections from cuts and burns. One result at Trafalgar Hospital, where all with the disease went for treatment, was that it became common for residents to keep cats as pets, as they kept rats away from fingers and toes or other skin that could be gnawed on unfelt while someone slept.

It has been the deformities that have characterized leprosy over the years, and there is no longer any reason for them to come about. With proper treatment the condition is quickly cured before damage can be done, which makes early identification all the more important. Some speak of the days before effective treatment was available. Lim Tai Cheng, who was successfully treated, came to Singapore from China with his mother when he was a child before World War II. He recalls, "You can see right, all those people, when they get sick, they lose their limbs just like that; fingers, toes. Before 1955, because there is no medicine, people couldn't help but lose their body parts. Some people couldn't do nothing else but watch their bodies rot, eat away at themselves." Dominic described one: "I remember one kid in the Home, at that time there's no medicine, and lip was affected, closed up until only one hole. So he couldn't take drinks and there were no straws. In the olden days, 1935, 1936, at that time, there was no straws. So, they used to come with paper or something and pour something inside the mouth. Within one month, he passed away."

World War II was especially difficult for the inmates when the Japanese occupied Singapore. Before the Japanese came in 1942 they had doctors and food. During occupation, "The Japanese did not know what to do with us," says Lee Kiat Leng. He says they were completely locked in and isolated and the doctors and nurses taken away. The patients were left untreated and there were many deaths, not due to leprosy. They were confined and provided almost no food, and many weak patients died of hunger.

My own seizures worsened, so in 1996 I went to John Hopkins Hospital in Baltimore to have my right temporal lobe surgically removed, in an attempt to gain control. Many people sent flowers and greetings. The most touching gesture came when I received an envelope from Singapore that contained individual "get well" letters from the residents of Singapore's Leprosy Home who could write or print in English. I suppose there is some irony in receiving "get well" greetings from lepers, but it was a reminder to hold on.

After seeing 16 years of courage and newly formed "families" I asked Dominic how he handled the stigma of ostracism of the most extreme form, rejected for 74 years. His answer was, "I got this four words. Did I ever told you? L, O, V, E. (as he counted out on the stubs of his fingers). L, Learn to control myself. O, my double smile. V, Very often, my tears will flow from my eyes. E, Every day I feel miserable or desperate while I sits alone. When I see and there's no one here, I feel very, very desperate and miserable. And that is the four words that is always in my mind." I tried AhLee, who is approaching 50 years without a family visit, and he said, "Some times I feel very angry, and also very annoyed." But the extrovert in him came out, "I'm always happy, thinking of something that might happen to me some day. In life you have to be cheerful in order to make ourselves healthier and stronger . . . As the saying goes, laughter is the best medicine. So I remain cheerful then I can be strong and healthy."

I'll never be Fred Gibson, able to find the something special inside of everyone, but I've learned some things about stigma. While leprosy and epilepsy are always on lists of conditions that suffer from stigma, there are a variety of physical and mental health conditions where the term is equally applicable, as AIDS victims have been referred to by some as "today's lepers." There are many groups of people who are marginalized by some form of stigma, and what I believe is that people only want to be seen as people, regardless of their physical condition or life–style choices. They experience the same emotions and react to kindness, condescension, rudeness, interest in them the same as others do. Whether they are transgender, quadriplegic or can't speak without stuttering doesn't define them, it is only a condition that is one part of a greater whole that gets overlooked once "we" forget to get to know "them." I should have understood that from my own life, but it took a group of friends from the Leprosy Home in Singapore to make it really clear. I really do like those people, as Fred Gibson predicted.

Robert Dodge became a history teacher in 1969, shortly after marrying Jane, an elementary school teacher. He developed epilepsy in 1977. Two years later the couple moved overseas to teach, where they have remained, beginning in London. Since 1983, they have remained in Singapore, where they raised their daughter, Anne. Dodge took time off to attend Harvard's Kennedy School of Government and wrote the biography of a favorite professor, Tom Schelling, who won the Nobel Prize in Economics in 2005. His book, "The Strategist," was published in 2006, in the U.S. and Asia.