Lepra & Victoria Hislop

Lepra are an international charity fighting disease, poverty and prejudice through community focused health programmes. Last year they changed the lives of over 400,000 people and provided health education for a further 900,000.  Lepra work with people who are living on the margins of society and in anticipation for our event with Lepra and Victoria Hislop on June 23 at The Club at The Ivy, we interviewed Lepra’s CEO Sarah Nancollas…

How has the face of Lepra changed over the years?

A real strength of Lepra has been our ability to change and continue to be relevant for current times and needs. When we were founded there was no cure for leprosy and our founders were determined to change this. Once a cure had been found we were at the forefront of ensuring people had access to the necessary drugs. As health systems developed we expanded our work to include health education, prevention of disability, and the social and economic rehabilitation of people living with the impact of leprosy long after being cured. In the past 90 years we have worked in over 30 countries around the world. At the moment our focus is on India and Bangladesh where the need is greatest. One thing that has not changed, and lies at the heart of all we do, is the dedication and commitment of our staff and their personal relationship with the people with whom we work.

Has the rise in social media helped to raise awareness of Lepra?

It has allowed us to engage directly with our supporters, having personal conversations with them and encouraging them to share our work. I strongly believe that it allows us to reach a new audience.

Why are people so naive to leprosy?

I think it has been out of public sight in the UK for so long (the last case contracted in the UK was in 1795) that most people believe that leprosy is a historic disease. Most people’s exposure to the disease is either through biblical references or old films. The reality is that one new case is diagnosed somewhere in the world every two minutes. The situation has not been helped by the World Health Organisation target to declare leprosy eliminated as a public health problem when new cases dropped below 1 per 10,000 people. Once this figure was reached the focus on leprosy diminished and funding reduced drastically. The real sadness is that leprosy is completely curable, and if diagnosed and treated early it will cause no lasting damage.

How is Lepra eradicating stereotypical judgements that have become associated with the disease?

In India and Bangladesh our teams deliver health education in communities dispelling the myths around leprosy and other neglected diseases. They use a range of techniques including plays, music, puppet shows films and talks. It is inspiring to sit amongst villagers during these events and see how well the messages are delivered and received.

We work to build the skills of organisations representing people affected by leprosy so that they are able to make their voices heard to tackle prejudice and misinformation. In Bangladesh we were part of a group that campaigned successfully to repeal a law that prevented people with leprosy seeking health care in general hospitals, and in India we are working hard to remove more than 12 discriminatory laws – having leprosy is still considered sufficient grounds for divorce in India.

In the UK we challenge the stereotypes whenever we can across a range of media. In 2012 we were successful in getting Aardman Animations to change a scene in the ‘Pirates: In an adventure with Scientists’ as it portrayed a character saying ‘I am a leper’ as his arm fell off.  People affected by leprosy felt that this reinforced the negative stereotypes that exist around the disease and we were able to mobilise action on their behalf through social media (Stephen Fry was particularly powerful on Twitter), TV and radio interviews, and coverage in national newspapers. We fight use of the word ‘leper’ to describe someone that has or has had leprosy. It is entirely wrong for an individual to be defined by a disease that they might once have had. We were once asked by a journalist what he should call someone that has had leprosy – our reply was ‘we use their name’.

Mother Theresa said “the biggest disease today is not leprosy but rather the feeling of being unwanted” – why are women in India and Bangladesh being shunned by their families and communities. 

Being shunned by families and communities comes back to the misinformation that exists about leprosy, how it is transmitted, and often the belief that it is a punishment for some bad deed. People are often cast out from the family or remove themselves from that environment. One of the strongest elements that leads people to exile themselves from their families is self-stigmatisation and a desire that their children should not be labelled or disadvantaged in any way. The solution to this comes back to effective health education and counselling for those affected and their families.

How important is it for Lepra to give a voice to people affected by leprosy?

It is vital for people affected by leprosy to be able to make themselves heard. There is a famous disability slogan that says ‘nothing about us without us’ and this is just as true with leprosy. We are working to build the ability of groups to demand their rights and drive the necessary changes in legislation.

Lepra and Maggie Semple Limited are joining forces in June for a unique Semple Secrets event. What does Lepra hope to achieve through this event and others like it? 

We are incredibly fortunate to have the support of Victoria Hislop and she is an outstanding ambassador for our work. Through this event we hope that the audience will have an entertaining and thought provoking evening, will understand a little more about leprosy, will challenge some of their preconceived ideas, and hopefully will engage with our work on a longer term basis.

Join us on 23 June 2014 in aid of Lepra Buy Tickets