A medical anthropologist shares her insights.
In the 19th century, surgeon Jonathan Hutchinson wrote, “The problem of leprosy is not for the idle-minded. It is full of intricacy and difficulty.” He also described leprosy as “a sort of aristocrat amongst diseases,” with a history that is “interwoven with that of civilization itself.”
Leprosy touches all aspects of life: the physical body, personal and community relationships, education, employment, citizenship and spirituality, to name but a few. Also, leprosy doesn’t just teach you things about life; leprosy changes your life.
Here are seven insights I have gained while conducting research on leprosy as a medical anthropologist in Portugal and Brazil.
We tend to think of touch as the most subjective and unreliable of the five senses. When I started my research at Portugal’s last leprosarium, Hospital Rovisco Pais, however, I discovered that the simple gesture of greeting someone with a handshake or a kiss on the cheek is full of meaning. It allows you to surmount historical barriers that separate people with leprosy from the rest of society.
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Leprosy showed me that to inhabit an untouchable body (the most radical form of social exclusion) is to be made by society less human, or even inhuman — without the same civil, political, social and human rights as everyone else. It taught me that touch is central to mutual recognition, which is the first step toward social inclusion. Touch revealed itself to be a valuable language in the daily struggle for human rights.
Leprosy was classified as a pathology with biological causes in the late 19th century, but its causes are not restricted to the bacillus Mycobacterium leprae. Social injustice plays a determinant role in leprosy’s incidence, transmission and outcome.
From both an epidemiological perspective and the personal testimonies of those affected by leprosy, it is clear that the private body interacts with public dialectics of citizenship and marginalization, as well as with social processes such as gender inequality, lack of access to education and/or dignified work. Another factor is the commodification of global health, which explains why leprosy is a neglected disease suffering from underinvestment in scientific research.
The conclusion? To overcome the medical challenges posed by leprosy, social justice is as important as access to drugs.
My work with leprosy organizations taught me that there is a remarkable fund of knowledge to be found in lay sectors of society, from women and men who have gained outstanding wisdom through experience. Such knowledge is seldom acknowledged by the State in the design of public health policies or by science in the planning of research. Unlike science or State management, lay knowledge doesn’t separate life into different spheres. Instead, it can create a synthesis between history, society, culture, etiology and disease. As such, it is particularly helpful in producing new and needed medical geographies — i.e., the effects of locale and climate on health — that could map the complex intersection between leprosy and social factors.
|Social struggle involves many hardships and sacrifices.|
A Yoruba proverb says, “Until the lion tells his side of the story, the hunt will only be seen through the eyes of the hunter.” By comparing the opposite policies of Portugal and Brazil on memory of the past compulsory internment of people affected by leprosy, I learned how the forgetting of leprosy becomes an important factor for the persistence of stigma and discrimination. Furthermore, the public act of remembering must be done by people affected by leprosy themselves.
Unlike Portugal, which still harbors what might be called an institutional stigma, Brazil renewed the public imagery of leprosy through the struggle of those who came out into public space claiming equal rights and reshaping the social representation of leprosy as Hansen’s disease — a disease like any other. Human rights aren’t merely an individual attribute; they also possess a collective dimension. The dispute for memory and history has important consequences for society at large.
In Brazil, I witnessed the power of people coming together at meetings involving MORHAN.* By coming together, those affected by leprosy are able to rebuild a positive identity and thus fight self-stigmatization by enhancing their self-esteem.
People feel stronger when they are together. They also feel more inclined to claim their own agency in fighting stigma and discrimination. The impact of this is huge, since one of the most effective strategies for eliminating stigma is close interaction at the micro level.
Stigma is not a natural consequence of leprosy; it is socially produced, revealing itself in different spheres of society, from institutions to work relations. In many cases, it is multilayered and associated with discrimination based on gender, race and/or class. By feeling more positive about themselves people with leprosy become powerful agents for communicating information about the disease and changing its social representation.
Social struggle from below involves many hardships, and activists make enormous personal sacrifices, as I have seen in Brazil. The energy that sustains them comes not only from ideological commitment but also from the unique empathy between people who come together as kindred spirits to fight political and social battles. In a collective struggle, spirituality is not out of place. It plays a role through the sharing of beliefs and the strengthening of resilience with faith. Grassroots movements nourish their struggles daily with the spiritual bond between activists and with a broader notion of social justice that reconnects human dignity and the human soul.
Many people affected by leprosy say that the bacteriological cure with multidrug therapy (MDT) did not make them feel healed. Such statements should not be dismissed as examples of the so-called inability of lay people to grasp medical procedures and knowledge. Healing comes with the full restoration of health. For people affected by leprosy, access to MDT alone may not be enough.
The outcome of medical intervention is mediated by institutional barriers to health such as dysfunctional access to medical care, delays in the diagnosis of leprosy or of leprosy reaction, or by extra-institutional barriers such as the type of work you do. Lay people provide a powerful insight into the link between leprosy and social justice. They also suggest something highly meaningful about the power to define the disease and the cure.
For a person being treated for leprosy reaction or who has developed disability, leprosy still threatens. A high level of medical care may be required, even if the case is no longer relevant to the epidemiological goal of stopping transmission.
The gap between curing and healing highlights the importance of involving people affected by leprosy in public health policies and medical services, since by evaluating the outcome of medical intervention using the evidence of their own bodies, they contribute a form of knowledge that is beyond the reach of scientific inquiry. It also teaches us that social justice depends on cognitive justice.
Alice Cruz is currently working as a researcher on ALICE: Strange mirrors, unsuspected lessons: leading Europe to a new way of sharing the world experiences, a project under the auspices of the Centre for Social Studies, University of Coimbra.
* The Movement for the Reintegration of People Affected by Hansen’s Disease