Singing group from Hongwei Hansen's disease village, who performed for a gathering of people from different villages, to celebrate IDEA's International Day of Dignity and Respect in Guangdong province

​Introduction 
NGOs, medical professionals, researchers, authors, and the media, have a responsibility to present people as individuals who have experienced a neglected tropical disease with the same rights as their fellow citizens.   Included in the United Nations Principles and Guidelines for the Elimination of Discrimination Against Persons Affected by Leprosy and Their Family Members, is a recommendation to use dignified images and language to portray people.

Guidelines for Images

• Use photographs that promote dignity and a positive spirit, which recognize a person as an individual, separate from the disease.  Consider using images of people during their daily activities such as spending time with their families or friends, pursuing their passion, working, or studying.
• Use photographs of the entire person, not isolated pictures of hands or feet.
• Do not use photographs that engender pity and fear.
• Do not rely on graphic images of advanced stages of a disease as a way to draw attention.  These do not accurately reflect the fact that with early diagnosis and treatment, physical effects of the disease will rarely be visible.
• If using images of persons who may show physical effects of the disease, include a reference to the fact that today with a cure, this type of disability is rare and would generally only occur if a person was not diagnosed early enough.
• Identify people whenever possible.

 
Guidelines for Terminology
The Person

• Whenever possible, use an individual’s name.  When an individual’s name is not known, refer to them as a person.  If a situation requires knowing that an individual has had a neglected tropical disease use person-centered language.
• When featuring an individual in a written or on-line publication, this should not be referred to as a person’s “story.”  Instead use the word “experience.”

The Disease

• IDEA now uses Hansen's disease for the name of the disease.  In some countries such as Korea or Brazil the name of the disease has been officially changed to Hansen’s disease, while other countries still use the term leprosy.  

Unacceptable Terms

• “Leper” or any other term used in a local language to describe a person is considered derogatory.  Such words hurt and offend people and their families, and rob people of their identities. 
•  “Victim/Sufferer”: These terms suggest helplessness, which does not reflect the lives of people who have met significant challenges in their lives.       
• “PAL”:  Abbreviations should not be used since they become another label.        
• “Deformed, Crippled”:  People who have many abilities;  who have families, friends, and jobs; and who express themselves in their art, music and writing, do not want to be characterized as deformed.  Instead use words such as “physical effects of the disease” or “disability.”
• “Clawed”: Such words conjure up frightening and incorrect images that do not refer to a person.
• “Patient”: This should only be used when referring to an individual in a medical context.  It should never be used to refer to individuals who have been cured of the disease.

• “Case”: This term relegates individuals to a number.