Terminology: The Importance of Language in Promoting Dignity
Books Written by People Who
Have Had Leprosy
“We refuse to allow others to define ourselves, our humanity, by a disease.”
Bernard Ka'owakaokalani Punikai'a, Hawaii
“I believe that our greatest challenge is to make sure that millions of people who have lost their identities will go back to being called by their own names.”
-- Francisco A.V. Nunes, “Bacurau”, Brazil
“An important step in our efforts to ensure that all individuals are treated equally is to permanently strike the hurtful word ‘leper’ from our vocabulary.”
-- U.S. President Bill Clinton, in a message sent for the Opening of the Quest for Dignity Exhibit at the United Nations on October 30, 1997
The issue of terminology goes beyond a preference for the term “Hansen’s Disease” or “leprosy” and their equivalents in different languages. The images, language and labels used in association with “leprosy” or “Hansen’s Disease” have the power to destroy a person’s life or reaffirm their humanity.
“We recommend that words like ‘kori’, ‘kustharogi’ and ‘maharogi’ which define people by their disease be eliminated from our vocabulary, and that expressions such as “kustharogi” or “birami” no longer be used to describe persons once they have been medically cured of the disease. If it is necessary to mention a person’s association with leprosy, the term ‘person affected by leprosy’ is strongly recommended.”
-- Pokhara Declaration, IDEA Nepal, 1998
“We will call each one by our own name with respect and dignity. We do not accept that we be called by the name of the disease or ill people after we have been cured.”
-- Declaration, IDEA Mozambique, 2005
Preferred Terminology: Refer to a person by their name whenever possible. If it is relevant to indicate that they have had leprosy, always use the term “person” first, i.e.,“a person affected by leprosy” “a person affected by Hansen’s Disease” “individuals whose lives have been challenged by leprosy”, etc.
The term “leprosy patient” or “Hansen’s Disease patient” should only be used in clinical settings and not used to describe individuals once they are cured. Similarly, it is inaccurate and inappropriate to continue to refer to someone as a “former patient” or “ex-patient” once they are cured.
Avoid labels such as “victim” and “sufferer” that promote images of helplessness.