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Talking about leprosy - Guidelines for journalists

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Terminology Guidelines from IDEA International
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"We will call each of us by our own names 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.” -- IDEA Mozambique Declaration

 Every culture has language that promotes dignity and language that is hurtful. To change the traditional social image of leprosy, it is important to use language that promotes dignity, recognizes a person as an individual separate from the disease, and focuses on ability rather than disability.

• A person should be referred to by their name whenever possible.  If it is relevant to indicate that they have had leprosy, use the phrase “person affected by leprosy” or a “person challenged by leprosy,” or “person who has experienced leprosy,” placing the word “person” first.  In countries where the term “Hansen’s disease is preferred, use the phrase “person affected by Hansen’s disease.”  Abbreviations like “PAL” or “LAP” should not be used since they become another label.

• Never use derogatory words such as “leper” or words that define a person by their disease like “Hansenite”.

• Do not use labels such as “victim” or “sufferer” which suggest helplessness.

• Avoid words or images that promote pity or guilt.

• Do not use the words “crippled,” “deformed,” “deformity.”  Instead, use the word disability and use specific terms that describe a person’s condition in neutral, inoffensive language.

• The terms “leprosy patient” and “Hansen’s disease patient” should only be used in clinical settings, not 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.

• Always emphasize people, not labels.

“We refuse to allow others to define ourselves, our humanity, by a disease.” -- Bernard K. Punikai`a, Hawaii, IDEA’s President for Advocacy (1997-2007)

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