In 1997, beginning with the international conference on “The Last Leprosy ‘Hospitals’ and the People Who Call Them Home” in Fontilles, Spain, discussions have been held on the future of leprosy heritage sites at various international forums. As the majority of remaining residents of these communities are now fragile, it has become ever more critical to ensure that these places and their history are remembered and that individuals currently living in these sites cannot simply be displaced.
In 2012 the International Coalition of Historic Sites of Exclusion and Resistance was established by individuals who have lived in these communities, together with heritage experts and representatives of advocacy and human rights organizations from Brazil, Colombia, Japan, South Africa, Taiwan, and the United States.
Rather than create a new organization, the Coalition draws upon available resources to grow this initiative. One of the members, IDEA, will serve as the International Secretariat to facilitate administrative and financial matters.
The name of the Coalition reflects the global magnitude of a time when individuals diagnosed with leprosy were forcibly removed from their families and communities and sent to live in remote locations, often for the remainder of their lives. Individuals responded to this exclusion from society through many forms of resistance. These ranged from sending letters and petitions requesting improvement of living conditions and protesting the separation of families, to writing autobiographies and creating music, art, and poetry that maintained individual identity and perspective in the face of overwhelming attempts to define people by the disease.