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A Disease Apart: Leprosy in the Modern World

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Everyone knows what you mean if you refer to someone as a leper: someone others shun. There are worse diseases, more painful ones, more numerous ones, and many more contagious ones, but leprosy was a horror of its own. This was largely because leprosy was visible; blotchy skin, bloated face, extremities dissolving away. Lepers had more problems in that they lost their sight, but more particularly they lost their sense of touch, and with it the capacity to feel pain, the blessing in disguise that protects us from the world's blows. It is a terrible disease, but the horror it inspired in others made it unique. In _A Disease Apart: Leprosy in the Modern World_ (St. Martin's Press), Tony Gould shows that in the past couple of hundred years, the disease has lost its capacity to shock. It still exists, but there are good treatments and we know that sufferers need not be objects of fear or horror, and that they are certainly not victims of some sort of curse from gods of any type. Gould has not pointedly drawn comparisons to AIDS in our own time, but the similar arc of social reaction to the disease is clear.

Much of what people know about leprosy comes from the Bible, and it certainly inspired the missionaries in their efforts against the disease, but probably those missionaries were fighting a different one than that known in Old Testament times and locales. The involvement of Christianity by means of missionaries to sufferers is a theme throughout this book. One victim himself wrote, "There is no mission to the tubercular, no mission to the diabetics, no mission to syphilitics.... there seems to be some special reward for working with 'lepers'." Such missions are not now fashionable, and we know missionaries are not an unalloyed force for good. Gould has focused in on one region after another to tell histories that all include the cruel management of sufferers and the eventual freeing of them to more enlightened ways. Perhaps the most famous is Father Damien, the Belgian priest who ministered to lepers in Hawaii from 1873 to his death from leprosy in 1889. An American Protestant missionary met him there, and wrote a private posthumous letter critical of Father Damien ("He was not a pure man in his relations with women, and the leprosy of which he died should be attributed to his vices and carelessness.") which the recipient published. Damien's cause was taken up by another previous visitor to Molokai, none other than Robert Louis Stevenson. The controversy only swelled interest in the colony and made Damien a martyr and a figurehead for fundraising.

Leper colonies were not only in far away, impoverished places full of people with dark skin. The American version was in a lovely place, if a little swampy, called Carville, Louisiana. Huge oaks, songbirds, and gorgeous flowering trees made it a place of inspiring natural beauty. "It should have been a tonic to the soul. Except that we were fenced in." So wrote Stanley Stein, a Jewish pharmacist from Texas who edited the patients' publication _The Star_. He was the bane of the U.S. Public Health Service, always campaigning in a spirited American fashion for more rights. The campaign worked, as gradually patients were allowed more time on the outside, and the fences that had held them were taken down. Stein became a star himself, touring the country and hobnobbing with the likes of Tallulah Bankhead. He died in 1967, but Carville still exists as does his paper. The facility was formally closed as a leprosarium in 1999, but some with the disease still live there; having been isolated all their lives, they fear trying to live in the outside world, although they could do so with which much less stigma due to Stein's campaign. Gould shows that this has been the pattern in one locale after another as scientific evaluation of leprosy as a disease has shown that it isn't anything more than a disease, and not a very dangerous one at that, especially now. There is a contradiction, though, in that sufferers and healers who insist that it is just a disease are taking away its special status. The special status may have been founded on fear, but take it away and the focus on treatment and rehabilitation may be lost, especially in poor countries with other diseases to fight. It is one of the many paradoxes in an engaging and moving book.

Hear the world 'leprosy' and you tend to think of bygone eras and diseases no longer threatening modern societies - but A DISEASE APART: LEPROSY IN THE MODERN WORLD shows otherwise, tracing the history of leprosy and surveying the legends, realities, and medical concerns surrounding the disease. From pioneers of early treatments and diagnosis to local epidemics of leprosy, chapters survey the controversies, research, and health risks which have surrounded leprosy. Treatments for cases caught early have been in effect since the 1950s - but there's still lots of misunderstanding and myth surrounding leprosy - and thus the need for this detailed medical history.

This is a thoroughly researched book, to the point of excruciatingly boring detail, that discusses the social and political implications of leprosy throughout history. There is very little discussion of the medical side of the disease, of which the author doesn't seem to have much grasp - A glaring omission considering that we hear far more than we need to about the personal lives of leading leprosy researchers, celebrity sufferers, and government administrators. There were some bizarre throwaway lines such as "Biblical leprosy was probably a different disease than true leprosy". Huh? I can accept that provided there was some explanation / validation. (which wasn't done). There is no discussion at all about leprosy medical research except for some faint condemnation about the cushy dwellings of researchers in leper colonies compared to the dreadful living conditions of the patients. This is not a book to be taken lightly - it's far too complex, and meandering, for a quick run-through. Read it if you like politics more than medicine. Otherwise, expect to be put to sleep (as I was, repeatedly).

There have been many books written about Leprosy a.k.a. Hansen's Disease over the years. Mr. Gould appears to have read many of the books about all the interesting people afflicted with the disease and the caretakers of people with Hansen's Disease over the past couple hundred years. A Disease Apart: Leprosy in the Modern World seems to be a condensed version of those many books broken down by chapter. This book is a great read for history buffs and anyone who thinks they might be interested in reading about Leprosy for the first time.

This book is far and away the best look at the history of the disease, colonies, and treatment, out there. On top of being extremely informative, it is not a dry read in the least bit. I finished it in a day. I particularly enjoyed the time taken to deal with Carville, it's founding and patients, particularly the amazing Stanley Stein. If a person has any interest in the disease at all, this book needs to be on their shelf.