Advocacy

  • Advocacy

Leprosy is one of the world’s most stigmatised diseases. It seems inconceivable that people affected by a mildly-infectious disease can become so marginalised from society. But leprosy sees entire families having their job, education and marriage prospects destroyed as a result of age-long stigma and misunderstandings surrounding the disease. A myth still prevalent in the world today is that leprosy is a curse for something you have done wrong, an untruth we are attempting to quash.

Due to the stigma and misunderstandings surrounding leprosy, advocacy is a key element to our efforts to tackle the disease and its consequences. It is an integral and essential part of our work. Find out how you can get involved in our campaigns.

Overseas

An example of advocacy having a positive impact in 2011 was the repeal of the 1898 Lepers Act in Bangladesh. This law had confined people affected by leprosy to state-run institutions. Although stigma and misunderstandings surrounding leprosy are still rife, people affected by the disease are now better equipped to integrate into society and access benefits available to them.

With India becoming an emerging economic power, our efforts in the country are increasingly advocacy-led. While India still remains home to a third of the world’s poor with 500 million people living on less than £1 a day, some state governments in India are introducing limited benefits. It is often, however, the most marginalised groups of society – including people affected by leprosy – who fail to access the benefits they are entitled to. A key role for us is letting people know their rights and entitlements.

Fear of leprosy fuels a vicious circle which begins with people hiding the first tell-tale patches on their skin in order to avoid being shunned by their friends and family.

With the help of a grant awarded by the UK government, billboard posters and radio adverts have been created and displayed across India’s major cities to encourage people with early symptoms of leprosy to seek medical help before they develop life-long disabilities. These adverts let people not only know that leprosy is easily treated but challenge discriminatory practices such as the children of a person affected by leprosy being denied a school place.

Challenging Anti-Leprosy Legislation (CALL) project

Unfortunately, the law of the land in India is discriminating against people affected by leprosy. We launched our Challenging Anti-Leprosy Legislation (CALL) project in 2012, with one of its aims being to overturn seven laws in India that discriminate against people affected by leprosy. These include leprosy being grounds for divorce.

There are also eight laws that can be used against people affected by leprosy due to misunderstandings about the disease in Indian society. People affected by leprosy are sometimes forbidden from travelling by train because of misuse of a law that gives power to the railway authorities to refuse to transport people with an infectious disease. Although somebody left with leprosy-caused disabilities may not have been ‘infectious’ for years, they often fall foul of this law because of their appearance.

The CALL project aims to empower people affected by leprosy by letting them know what their human rights are and encouraging them to come together to fight for them. This is quite a challenge for our staff as many people affected by the disease have suffered so much prejudice that they no longer have the confidence to complain about a driver throwing them off a bus when they see their clawed hands.

But it is hoped that by taking these first small steps, communities will eventually legally challenge a discriminatory decision such as a young person being denied access to an education or job training scheme because they are from a leprosy-affected background.

In the UK

We have a moral duty to challenge any legislation which could discriminate against a person affected by leprosy in the UK or challenge the media for perpetuating negative images of leprosy. This is frequently done through our ‘Don’t Call Me a Leper’ campaign.

Recent advocacy success

The Leprosy Mission was integral in the successful advocacy efforts that saw Aardman Animations drop a controversial scene from the 2012 Oscar-nominated animation 'The Pirates! In an Adventure with Scientists'. The scene originally depicted a character on board what was termed a ‘leper ship’, showing his arm falling off for comic effect.

We also successfully lobbied the Home Office in 2012 to change guidance issued by the UK Border Agency to medical referees considering applications for entry to the UK. The guidance previously recommended that people affected by leprosy are automatically refused entry. The guidelines have now been changed resulting in anyone with untreated leprosy being treated with multidrug therapy before they enter the country.

We have worked with the Health Protection Agency (HPA) to remove outdated guidance that advised leprosy patients in England and Wales should be isolated. This is unnecessary and breaches human rights. A new Memorandum was published in December 2012 with clear and correct messaging for clinicians.

We welcomed Prime Minister David Cameron’s acknowledgement that disability is a serious issue that must be prioritised in the Post-2015 Development Goals. Disability was not mentioned in the original Millennium Development Goals despite 650 million people worldwide living with a disability. These include three million people living with a leprosy-caused disability.