Passing down stories about Hansen’s disease and using its universality as a lesson for the future

Significance and background

   Patients with Hansen’s disease received discriminatory treatment from old times as it was thought they were being punished by Heaven, and in and after the Meiji era (1868 to 1912), they lived a harsh life due to mandatory isolation. People having recovered from Hansen’s disease, who were not able to have children due to the sterilization and abortion policy, have a mean age of over 85 and their lives will end in the near future. It is necessary to pass down the experiences of people having recovered from Hansen’s disease as lessons and instructions for future, and students can develop ethical sensibility through exchanges with people having recovered from Hansen’s disease. Furthermore, any specific policy as to how we will be present at their deathbed in the current system has not been decided. Increasing the number of people who understand and support people who have recovered from Hansen’s disease, who lived a harsh half-life, helps them die a natural death peacefully with dignity.

Objectives

   Based on a principle of the SDGs, “Leaving no one behind,” in cooperation with people having recovered from Hansen’s disease, sanatoriums, the university and citizens, we aim to (1) protect the dignity of people having recovered from Hansen’s disease who are 75 years old or more, (2) pass down the history of Hansen’s disease so that we do not repeat the same mistake in the future, and (3) use the wisdom of people having recovered from Hansen’s disease, who endured hardship, and the universality of the incidents involving Hansen’s disease to solve problems in the future.

Overview of activities

  1. Fundamental education through lectures on ”Hansen’s disease and medical ethics”
  2. Interaction between students and people having recovered from Hansen’s disease
  3. Fostering story-tellers
  4. Accumulating and utilizing academic results by the Hansen’s disease ethics study group
  5. Laying the foundation for introducing Hansen’s disease healthcare ethics into medical education
  6. Academic support to solve the problems faced by sanatoriums

Expected results

  • Providing people having recovered from Hansen’s disease with support for motivation in life and a dignified death
  • Increasing the number of people who understand and support those who have recovered from Hansen’s disease
  • Cultivating students’ ethical sensibility and insights on human dignity
  • Presenting a method for passing down the story of Hansen’s disease
  • Clearly specifying the universality of the incidents involving Hansen’s disease and a method for solving problems in the future
  • Clarifying the conceptual structure of Hansen’s disease medical ethics and preparing teaching materials
Tomb housing the remains of patients at the time of the opening of Sanatorium Oshima-seishoen (1909)
Oshima Island in spring (the building with a green roof: charnel house) (Photo provided by Mr. WAKIBAYASHI Kiyoshi)

 

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