Group of attendees at the International Symposium on the History and Heritage of LeprosyThe Symposium consisted of five sessions. Our first Symposium session was held while we were still at the National Hansen’s Disease Museum on Wednesday 27 January. It was the first part of country overviews, in which Ethiopia, the Pacific Islands, India, Brazil, Taiwan, and South Korea gave presentations about where they were at with their leprosaria. The next day, at the Sasakawa Peace Foundation office, which is a huge glass-fronted building on a busy road, we also heard from Malaysia, the Philippines, China, and Thailand.

A second session on Thursday 28 January covered the “Major Players in History Preservation: Academics” with really good presentations from Brazil, India, and Hong Kong. This session was concluded with a global overview by Dr Jo Robertson.

The next day, Friday 29 January, was spent on the last three sessions at the Nippon Foundation building. In the morning, we had eight presentations on “Major Players in History Preservation: National Agencies and People: Inclusiveness and Sustainability”, moderated by Dr Benjamin Mayer Foulkes from Mexico, a charming and highly engaging man and psychoanalyst. There was a 3D ‘future perspective’ presentation from the Philippines on what they hoped their new museum would look like, presentations from China, Thailand, South Korea, and Malaysia on what their governments were doing about the preservation of historical artefacts and old leprosaria, and then further presentations from the Philippines and Malaysia (from a different perspective) as well as from Colombia.

The fourth session focused on “Legacies – Creativity – Artefacts: Arts, literature and creative products” with fascinating presentations from Nigeria, Colombia, Brazil, and Japan. I especially enjoyed Dr John Manton’s presentation involving the story of Ikoli Harcourt Whyte, a Nigerian musician who was in the Uzuakoli leprosarium and worked out his own way of writing music for the settlement choir to sing.

The last session of the Symposium, and the second for that afternoon, was on “History Preservation: Future Scenarios”, which set out how various countries want to preserve their ‘leprosy culture’, raising money to refurbish old leprosaria, and set up museums of artefacts that they would have housed.

Contentious issues and resolution

Not all sessions went without discussion. On 29 January, the morning session was followed by some debate. There was a lot of concern about how national agencies might wish to tell the story ‘in their own way’ – i.e. either gloss over the truth of the existence of leprosy, or write it out altogether. Many people were sceptical that government agencies with ‘national pride’ to maintain or with case number figures to produce might ‘massage’ the information that they had at their disposal – in order to write leprosy out of the equation if it did not suit their national agenda. With members of the Ministries of Health of Thailand, the Philippines, and Japan being present, the discussion got rather heated at points, and only ended when lunch was announced.

After the last session of that same day, another discussion took place about why countries who were strapped for money for current medical and other requirements would want to spend it on keeping old leprosaria alive, when they would be a continuous burden to be maintained. Arguments were put forward that these could become ‘living’ museums to ensure that the ‘history of leprosy’ was never lost; others felt that, in this digital age, ‘virtual’ leprosaria could be created based on what was already in existence. There was also a discussion, similar to the previous one, about the political control of these sights and the re-writing of history.

It was the last day of the Symposium, though, Saturday 30 January, that caused the most discussion. A draft resolution of what we were going to agree upon had been circulated two days earlier and the wording of some of the resolutions was questioned. Additionally, the use of the word ‘leprosy’ instead of ‘Hansen’s disease’ was opposed by those who were affected by the disease, whereas many working directly with it indicated that it was just another name for the same thing. Also, many believed it should be pointed out in the resolution that leprosy is not a ‘historical’ disease, but an ongoing fact of life for millions of people world-wide, so this was added in, as well as the statement that the historical abuse of the human rights of those affected by leprosy had been a mistake.

Pledge of commitmentBy the end of the morning, we had agreed a form of words and a huge canvas was signed with the names of all speakers as well as others present. We parted with promises that, as signatories of the resolution, we would do all we can to ensure that the history of this disease and its effects is fully documented and available as a resource to future generations so that the terrible events and human rights abuses of the past are never repeated in the future. With so many governments apologising for what was done to those with leprosy in the past, hopefully lessons have been learned so that we can move forward towards a world that is free from leprosy.