Robson on Takayama, 'The Last and Longest Mile: Yohei Sasakawa's Struggle to Eliminate Leprosy'

Author: 
Fumihiko Takayama
Reviewer: 
Charmaine Robson

Fumihiko Takayama. The Last and Longest Mile: Yohei Sasakawa's Struggle to Eliminate Leprosy. London: Hurst & Company, 2021. Illustrations. xiv + 268 pp. $34.95 (cloth), ISBN 978-1-78738-340-1

Reviewed by Charmaine Robson (University of New South Wales) Published on H-Sci-Med-Tech (November, 2022) Commissioned by Penelope K. Hardy (University of Wisconsin-La Crosse)

Printable Version: https://www.h-net.org/reviews/showpdf.php?id=57657

“People in the world’s rich nations tend to regard leprosy as a thing of the past,” writes author Fumihiko Takayama in the preface to his recently published book, The Last and Longest Mile: Yohei Sasakawa’s Struggle to Eliminate Leprosy (p. xiii). Indeed, social histories of leprosy predominantly focus on the period before the middle of the twentieth century. After this time, successful antibiotic therapy seemed to have stamped out this ancient affliction, taking with it the shaming and shunning uniquely associated with leprosy over thousands of years in Western and other cultures. This book seeks to persuade us otherwise, by following the tracks of its protagonist, Yohei Sasakawa, the World Health Organisation (WHO) Goodwill Ambassador for the Elimination of Leprosy, on a journey to the globe’s leprosy hotspots over the years 2010 to 2016. He was accompanied by Takayama, whose observations and chronology of events, narrated in first person, form the basis of this book. The pair visited twenty nations, including Malawi, Egypt, Kiribati, and the two countries with the highest incidence of leprosy, India and Brazil.

Sasakawa’s aims, in line with his ambassadorial role, were to bring the world’s attention to the continuing problem of leprosy, to foster eradication of the disease, and to help improve the welfare of current and former leprosy-affected people. The WHO benchmark for leprosy elimination at this time for any one country was a prevalence of less than one case in ten thousand of the population. By 2010, even India had achieved this level overall. However, some provinces both there and in other nations had higher figures, and Sasakawa wanted to visit these places to find out why they varied from the national average and what could be done to reduce numbers.

Sasakawa believed that leprosy should not have been difficult to eliminate. Multidrug therapy (MDT) consisting of a combination of the antimicrobials rifampicin, dapsone, and clofazimine has been an effective treatment for leprosy since the early 1980s. It was cheap or free and, supplied in blister packs of capsules or tablets, was easy to take. People who took MDT were almost immediately noninfectious. Yet as he traveled around and spoke to leprosy-affected people, he realized that the long-held stigma of leprosy remained as an immense barrier to their access to treatment and to their care by relatives or others, across diverse locales. By the twenty-first century, although a curable, mildly infectious bacterial disease, leprosy had not lost its religious or spiritual significance in many places, so that it was still dreaded or ignored, or its sufferers avoided. It was no wonder transmission of the disease continued unabated in some areas while many people lived in abject poverty and misery. Corrupt governments, which gave lip service but no support, presented further obstacles.

Sasakawa used a raft of tools to further his, and WHO’s, mission. One was the set of WHO guidelines and principles developed in relation to the rights of current and former leprosy patients and the pledges by governments to adhere to them. A second was the man himself, his wealth, and perhaps his charisma. Sasakawa is an extremely wealthy individual, being son and heir to the late Japanese entrepreneur, Ryōichi Sasakawa, and head of the largest philanthropic foundation in Japan, the Nippon Foundation. His foundation has given immense financial and other support to people with leprosy and to WHO leprosy programs. According to Sasakawa, the leprosy cause has been his personal quest since childhood. A third tool was the media. Almost everywhere that Sasakawa traveled, the local press and TV channels were in tow, ready to report on what was going on with leprosy patients, whether human rights violations or a facility to be proud of. The media also publicized Sasakawa’s campaign to destigmatize leprosy and to pressure governments into diverting resources to leprosy care. At every opportunity, he made impassioned speeches to local people and their leaders, denouncing discrimination against the leprosy-affected and unafraid of calling neglectful government leaders to account. In front of the cameras, he also habitually sat close to leprosy-affected people and spoke to them gently and kindly, asked them about their experiences, and gave them money. He held hands with them or touched their stumps to indicate the apparent harmlessness of leprosy and perhaps to position himself at their level. According to Takayama, the people responded positively to Sasakawa’s overtures. Photographs in the book also show these encounters.

These scenes resonate uncomfortably with Christian representations of the leprosy-affected person as the object of saintly succor, exemplified in the figures of St. Francis and Jesus Christ, both of whom disregarded social taboos to sit with lepers or wash their feet. Indeed, Sasakawa appears in another publication doing the latter.[1] There is a striking irony in Sasawaka’s decrying the use of the biblical leprosy metaphor (including pressuring Pope Francis to drop the leper-sin metaphor), while employing it himself, even if his intention was to destigmatize leprosy and those afflicted. The effect of the staging and publicizing of these interactions skews the focus of the book from the people affected to Sasakawa as a hero.

Takayama portrays Sasakawa as a humble hero. He gives little information about Sasakawa’s privileged background and status or the source of his funds. He wonders at the stamina of the seventy-three-year-old on long days in the tropical heat and sun, skipping meals as the pair traipsed to leprosy villages and hospitals and then to meetings with doctors and officials. In one incident, Takayama was shocked to find Sasakawa cross-legged on the floor of an airport lobby dressed in the simple white garment he had worn in India. Sasakawa was trying to find out what it was like to be a beggar, after learning, much to his disapproval and discouragement, that Indian leprosy-affected people sometimes chose to beg rather than rely on income from their labor.

In conclusion, this book succeeds in raising awareness about the connections between leprosy, disability, and poverty in very recent history on a global level and about the work by WHO with regard to reducing leprosy incidence and the associated social and health disadvantages. It also documents the self-determination and mutual care of communities of people working and living in self-sufficient cooperatives. Takayama is a skilled and sensitive writer who introduces many interesting and strong people from leprosy-affected communities fighting to overcome discrimination and assert their human rights. The book is also a study of corporate philanthropy, spearheaded by the personable Sasakawa, who, if elevated to saintly status in this account, leaves us in no doubt of his generous and untiring efforts in the leprosy elimination campaign.

Note

[1]. Jacky Habib, “Meet the Japanese Philanthropist on a Mission to End the Stigma around Leprosy,” Global Citizen, October 29, 2021, https://www.globalcitizen.org/en/content/the-last-milers-yohei-sasakawa/.

Citation: Charmaine Robson. Review of Takayama, Fumihiko, The Last and Longest Mile: Yohei Sasakawa's Struggle to Eliminate Leprosy. H-Sci-Med-Tech, H-Net Reviews. November, 2022. URL: https://www.h-net.org/reviews/showrev.php?id=57657

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