Putting the person before the disease

Why we don’t use the word ‘leper’

ILEP members are committed to using language that promotes dignity, respect, and recognises a person as an individual separate from the disease, focusing on their qualities rather than disabilities.

This means we:

  • Use the phrase “person affected by leprosy”
  • Do not use derogatory words such as “leper,” or words that define a person by their disease like “Hansenite.”
  • Do not use abbreviations like “PAL” or “LAP”, making people become just another label.

The ILEP Policy on the use of language, photography and imagery was developed in consultation with members and agreed in October 2016. It is intended to prevent the accidental or inadvertent use of language or images that would offend, affront or in any way cause a person to be hurt, lessened, disrespected, excluded or victimised by others or themselves.

Read the policy here

To harm or to heal: the power of words

Mathias Duck, Chair of the ILEP Panel of Men and Women Affected by Leprosy, shares his personal perspective on why it is important not to use the ‘L’ word

Words have power.

Sometimes we give them more power than they should have.

Sometimes we underestimate their power.

Power to encourage or power to discourage.

It’s not just how it is said, but how it is heard and perceived.

The ‘L’ word carries thousands of years of baggage, negative images, preconceived notions, prejudice, myths and stigma. It perpetuates these images, labels people affected and degrades us. It’s not always meant that way, but that is the effect. It’s part of the English language, part of some laws (in some countries) and part of sacred texts. This makes it even more complex, because the use of the term is enabled and perhaps even blessed.

When we try to reduce stigma, language is important. It is not magic, in the sense that getting rid of the ‘L’ word will eliminate stigma automatically. However, it is a crucial step. In Paraguay this has happened with people living with HIV. A deliberate effort was made to avoid a discriminatory word, while at the same time providing people with respectful alternatives. Over time it helps to change people’s perception.

Words can degrade, but they can also contribute to a sense of dignity and respect.


Influencing others

Unfortunately, it is still fairly common to come across the use of derogatory language in a media article or story that contains an otherwise positive message and could be useful to share.

We routinely reach out to journalists and media outlets about the importance of using appropriate language and the positive role they can play in helping end stigma and discrimination.

If you come across the use of the ‘L’ word or other negative language, you may want to respond respectfully by suggesting alternative language. Sometimes, you may want to share a news story that does not adhere to ILEP’s guidelines but otherwise contains useful content. We have prepared some sample messages that can be sent to media outlets and disclaimers that can be posted to social media as relevant.

Click here to view these sample responses.