by Geoff Prescott, Chief Executive, Lepra
|Geoff Prescott, Executive Director, Lepra|
World Leprosy Day 2019 comes at a time when leprosy at least appears to be gaining some publicity in the mainstream media. Recent articles about leprosy have been shared across India, as discriminatory laws, such as leprosy being grounds for divorce are finally being removed from the statute books there. However, there is far more work to be done to eliminate the prejudice and discrimination remain two of the biggest obstacles the leprosy community face in our battle to beat leprosy.
At Lepra, we feel it is important to acknowledge that “stigma” as a word does not cover the complex range of issues that people affected by leprosy face and can even imply that they are somehow “to blame” for their condition. Prejudice against the disease, leads to discrimination which can lead to financial and societal hardships and for the individual and their families and potentially mental health problems. Indeed 1 in 2 people affected by leprosy are also suffering with a mental health issue.
We will shortly be launching a new position statement and report, outlining our approach as we enter our 95th year.
Our goals for World Leprosy Day 2019 and our 95th year are twofold. Firstly, we are calling for more investment into research into leprosy, how it is transmitted and can be treated. When Lepra was founded in 1924, a cure seemed impossible to achieve, but with time and resources given to research, it was indeed found and we were one of the first organisations to use MDT in 1975.
Last year just $16m was invested into leprosy research. This is something that can and must change . Investing in leprosy research via facilities like our Blue Peter Health & Research Centre, should be seen by business and governments as a wise investment in people, benefitting of all.
Of equal importance is the need to tackle the discrimination that people affected by leprosy face head on, first by acknowledging and showing it for what it truly is– prejudice. This is ingrained and ancient, prejudice against leprosy seems to be built in to every facet of human life and could almost be seen as primal.
This prejudice can see them ostracised from their community or family, lose jobs, partners, education opportunities and even their home. It allows 157 laws to remain on statute books that directly discriminates against people affected by leprosy and influences decisions on investment and resources at the highest levels. This must change…Now!
To do this, we first need to change our own attitudes towards leprosy, how we use the disease and words associated with it. In the media, political arenas and in our day-to-day lives, language used can actually have a real impact on either sustaining, or ending this prejudice.
For example, in 2019, nobody should be called a “leper” or subjected to prejudice or discrimination because of a curable disease. Referring to a “leper colony” when leprosy colony would equally do the job can, however inadvertently reinforce that negative stereotype. People affected by leprosy are often called “lepers”, they each have a name – how many other diseases see those who are affected referred to by their disease? This can cause terrible hurt to those affected and is dehumanizing to say the least.
Using leprosy as a cipher for a worst-case scenario, or a negative outcome is equally unacceptable. The phrase ‘social leper’ for example perpetuates the stereotype and reinforces the prejudice people affected encounter in their day-to-day lives. Other words are available such as “outcast”, “pariah” that have the same meaning, yet leprosy becomes the “easy one to use” and again reinforces the negative image.
Where even world leaders use leprosy as a means to describe unfavourable or worst case outcomes, this also reinforces that leprosy is the worst thing that can happen when it is simply untrue. When detected and treated early, leprosy is not only completely curable but disability can be avoided. It is less infections than many other diseases and 95% of us are immune. Leprosy is far from a worst case scenario, yet is allowed to be viewed and treated as one.
The genuine worst thing that can happen is to allow this situation to continue.
You can help change this by signing our petition atand pledging to no longer use the word “leper” or use leprosy as a metaphor or expression of a negative outcome.
People affected by leprosy are entitled to the same dignity and respect we would hope for ourselves and we can change attitudes; it can be done! Reversing prejudice amongst individuals and institutions will lead to the day when we will beat leprosy…together!