stigma and leprosy

I would like you(the reader) to please excuse me for not devoting as much time as I would have liked to this project on the exploration of illness and dying. I have not been feeling too well myself the past few days, so I gathered my research on the resources that I had in my home: my computer.

Not feeling well made me think more about sickness and how it can define your identity if the illness is severe and prolonged (unlike mine). This got me thinking about the concept of stigma and how it relates to sickness and has affected the way we treat people in our society. Although there are many ways in which a group of people may be stigmatized- homosexuality, obesity, criminal records, disabilities, race, religion, etc.- sickness has been one way in which groups have been stigmatized and shunned throughout history. But not all illnesses lead to stigma! Some illnesses like heart disease and diabetes generally don't result in the person with the affliction being shunned. We often think its unfortunate that they are sick and take pity on the people, but we are less likely to feel disgusted and want to avoid them. However, there are other illnesses that evoke deeply rooted reactions among people. For example, syphilis, HIV and other sexually transmitted diseases often bring out a moral reaction and judgment. So too diseases that disfigure a person's body and face such as elephantitis and leprosy (now known as Hansen's disease).

I was reminded of how people with leprosy have historically been stigmatized on Friday night. That night, the love that I had for the actor Gael Garcia Bernal was once again rejuvenated by watching two of his films. Having been glued to my bed, my only source of entertainment came from Netflix, a long lost friend. First I watched The Science of Sleep, and then I watched The Motorcycle Diaries. The Motorcycle Diaries tells the story of young Ernesto "Che" Guevara and Alberto Granado; two young Argentine doctors who tour South America on their motorcycle and on foot. It chronicles their journey through small towns and villages in the Andes and the southern cone. In one section of the film, the two doctors find themselves in San Pablo, Peru, a remote village in the amazonian region that is also a lepor colony. 

Ernesto and Alberto are brought to the colony by boat, led by another doctor. They are handed gloves and are told not to touch the patients. Ernesto asks whether or not the people are contagious and is told "not by touch," He then asks why he needs to wear the gloves and refuses to put them on. The remainder of this part of the film focuses on Ernesto and Alberto's refusal to accept the stigma of the lepors. They do this largely by treating them as if they were regular humans (how they should be treated!) For example, there is a scene where the Argentine doctors play a game of soccer with the "lepors" and the people are clearly enjoying themselves, for what seems like the first time in many years. Even the nuns, who worked among the "lepors" try to discourage Ernesto and Alberto from eating and spending time among them. Like the other health workers, the Argentine doctors are expected to live on the opposite side of the river, apart from the lepors. In one of the most dramatic scenes in the film, Ernesto decides at his birthday party that he would rather celebrate with the lepors than the so-called "normal people". There was no way for him to get across the river so he decided to take a big risk and swim to the other side. 

Ernesto's action made me think that the best way to counter stigma is to treat people humanely- as if they were normal. According to Erving Goffman in "Stigma and Social Identity," Ernesto is a "wise" person who acts as a bridge between the stigmatized lepors and the rest of society. He writes: "I have considered one set of individuals from whom the stigmatized person can expect some support: those who share his stigma and by virtue of this are defined and define themselves as his own kind. The second set are- to borrow a term once used by homosexuals- the 'wise,' namely, persons who are normal but whose special situation has made them intimately privy to the secret life of the stigmatized individual and sympathetic with it, and who find themselves accorded a measure of acceptance, a measure of courtesy membership in the clan. Wise persons are the marginal men before whom the individual with a fault need feel no shame..." By refusing to wear gloves and risking his life to celebrate his birthday with them, Ernesto showed that he was sympathetic toward the "lepors" in a way that was different even from the nuns and other doctors who helped them. Ernesto chose to treat the "lepors" as though he were no better than them and because he did, he was accepted by them.  

After reading Goffman and watching the Motorcycle Diaries, my mind went back to how our society deals with people who have other forms of illnesses like cancer. Cancer may not be like leprosy in that people who have cancer are not physically isolated nor are they shunned by their communities. However, people with cancer often say that the only people who understand what they're going through are other people who have been diagnosed with cancer. In this way, they can become socially and psychologically isolated from family and friends who may not understand what its like to cope with an illness thats eating away at your body. Because of progress in modern medicine, there are a growing number of people who survive from cancer. There are also a lot of people who have family members and loved ones who have suffered from cancer and in some cases died. Some of these people become "wise" like Ernesto. And like Ernesto, they can be advocates for countering the stigma against cancer patients.