Don't Fence Me In. From Curse to Cure: Leprosy in Modern Times

Don't Fence Me In is an account of the recent history of what many people still regard as a mysterious disease. Tony Gould tells the story of the anguished, fettered soul of a leprosy patient longing to be liberated. Fortunately today, after centuries of terrible existence, it stands almost completely free. This has been achieved through the untiring efforts of committed missionaries, social workers, epidemiologists, microbiologists, leprologists, reconstructive surgeons, and above all the patients themselves, who rose up from a “living hell.”

Figure 1.

Tony Gould

Bloomsbury, £20, pp 420 ISBN 0 7475 7510 X

Rating: ★★★⋆

Gould's narrative contains vivid accounts of the family life and suffering of people with leprosy, and of how complete ignorance about the disease created morbid fear in people's minds and an extreme degree of leprophobia. These accounts reveal the human tragedy of leprosy. They are heart rending, overwhelming at times, and are aptly summed up as follows: “Leprosy has stood as the most fearful of the human afflictions... Leprosy was not a diagnosis, it was a pronouncement of death. I am suffering in my mind because I cannot suffer in my body.”

Figure 2.

Challenging stigma: Mahatma Gandhi with a leprosy patient

Credit: www.topfoto.co.uk

Tony Gould minutely details even the posture and attitude of the caregivers, most of whom were steeped in ignorance about transmission of the disease and had mistaken beliefs about their altruism. In conveying what life was like for people with leprosy, Gould describes their strained relationships with their parents, their jaded affairs, their sex lives, and their sadism.

The author's stories take us to Norway, Hawaii, the Philippines, Japan, South Africa, Nigeria, Nepal, and Louisiana, but India, one of the countries that now have the largest proportion of leprosy patients, is hardly mentioned. Perhaps Gould felt that the misery and deprivations faced by people with leprosy, these “children of a lesser god,” were the same the world over. Yet public attitudes to leprosy have been shaped not only by the fear of losing fingers and toes and developing a leonine face—the degree of compassion advocated by religion, the strength of family ties, and people's financial status have also played a part. Gould makes a passing reference to India in relation to its customs, but says nothing about the knowledge and understanding of leprosy shown by the Indian system of medicine. There are descriptions of the disease in ancient Vedic writings and the book Sushruta Samhita, and treatment with chaulmoogra or hydrocarpus oil has been known to Indians for centuries.

Developments during the two centuries that Gould reviews include changes in people's attitudes related to segregation, institutionalisation, and advances in treatment. People went from worshipping snakes or the sun god, or trying to get bitten by a cobra, to giving chaulmoogra oil by rubbing, orally, or by injection, and then from using sulphones to multidrug therapy. For readers not conversant with medical science, the book is a first class introduction to the history of treatment.

Gould dwells mainly on occidental missionaries, sisters from the church, and other motivated people of Christian faith who served the cause of leprosy patients. Unfairly he makes no mention of Indians such as Dharmendra, Khanolkar, Ramanujam, Charles Job, Baba Amte, Ganapati, and Noordeen who contributed greatly to the social uplifting, treatment, rehabilitation, and care of people with leprosy.

Many people at various times and on various continents have challenged the stigma and secrecy surrounding leprosy and the legislation facing people with the disease. Mahatma Gandhi, while fighting against foreign rule, was fully aware of the plight of the lower caste untouchables and leprosy patients. Gandhi was probably the only political leader of substance and stature who would dress the wounds of someone with leprosy to teach people compassion and to destigmatise the disease. When called to open a leprosy hospital, he said, “Opening a hospital is an ordinary thing. You call someone to do it. I will come to close it.”

In the last chapter Gould seeks to bring out the controversies related to the protective role of BCG, the World Health Organization's claims of disease elimination, the time taken to achieve this goal, the duration of therapy, and the integration of leprosy services with general health services.

Don't Fence Me In is structured like a thriller, with different chapters set in different places across the globe. Even though I am a clinician and not an avid historian, the book made interesting reading. What makes the book special is the feeling of credibility: Gould has done his research. However, the book would have been more complete if Gould had covered countries such as India, where the ravages of the disease are still felt and where the book's title, Don't Fence Me In, would fit more aptly.

Let us all join the author in hoping that, despite all the shortcomings and the low level of commitment from politicians and programme managers, leprosy will be eradicated in the not so distant future.