What is the secret to building and empowering a leprosy champion?
7 Top tips from The Leprosy Mission's team in India
The Leprosy Mission’s team in India are building and empowering leprosy champions. Over recent years, hundreds of people have undergone training and have taken on new roles as champions in India. These champions transform both their communities and the perceptions of leprosy within their communities.
In this article, we unpack the secrets to building successful leprosy champions, as well as how to provide opportunities for these champions to be change agents and role models and the challenges and successes that come with this important work.
By talking with Nikita Sarah and Subhojit Goswami from TLM India, we have put together this step-by-step guide to the tried and tested process of building leprosy champions.
Our team in India want leprosy champions to be change-makers, people who live within the general community and in leprosy colonies, and have the passion and competence to change perceptions about leprosy amongst their neighbours, friends, and colleagues.
These champions are often identified at our hospitals. As our teams in the hospital engage with patients, they are conscious of people who seem keen to do more, to speak out, and to make a difference.
Our hospitals offer counselling to patients. Hence, the counsellors are often the first point of call for identifying champions. As they talk with patients and hear about their struggles and their ambitions, the counsellors can get a sense of who is ready to become a leprosy champion.
Some patients stay in our hospitals for weeks or even months. In that time, some patients look to become more involved in the activities of the hospital, engaging with other patients and offering support to our teams. They are potential candidates for becoming leprosy champions when they return to their communities.
Patients sometimes need convincing that they should become a champion. Our teams motivate potential champions by helping them to see the impact they can have. Often patients are arriving with so many immediate needs that it is hard for them to see into the future and understand how taking the step to become a champion could transform their lives and their communities.
Our teams in India are well-placed to meet the needs of patients who arrive with anxiety, low self-esteem, and fear. We have an infrastructure that offers not just medical care, but training, education, counselling, and community support to help patients undertake a journey from being low on confidence and self-esteem to becoming an inspiring figure with a strong voice.
Over time, even the shyest and most fearful patients can become leprosy champions, with the right support.
As we have created more champions over the years, we have seen that they are often the best placed to show would-be champions that their voice matters, and their fears can be overcome. Champions so often inspire other champions.
Training and education are crucial first steps for any champion. Our team often provide vocational training so that patients can get skilled, gainfully employed, and become financially independent. In other cases, champions receive funding to access higher education.
As well as ensuring that champions can feel confident in their own independence, our teams help them to understand their rights and entitlements and how they can access those.
Our rights-based trainers help champions to see what pensions and other funding they have a right to access. Champions are informed of different rights, Acts, and laws that relate to their wellbeing, and which government departments and duty bearers are responsible for ensuring those rights are accessible. They are made familiar with the roles of district magistrates, district leprosy officers, chief medical officers, municipal corporation officials, block development officers, and the many other officials who keep the wheels of governance running.
If the champions do not feel confident to speak to officials, our teams will coach them on public speaking and clear communication.
Once training and education are covered, champions are connected in with networks of persons affected by leprosy and other disabilities.
Champions have the opportunity to lobby leaders at their village level, within block levels (blocks are collectives of four or five nearby villages), at the district level, the state level, and even the national and international level. Our teams will also introduce champions to the disabled peoples’ organisations that are best placed to offer help at any of these levels.
We are conscious of the different champions that we have across India and can connect the right champions for specific challenges. If a village is struggling with access to basic amenities like water or electricity, local champions are often the most powerful advocates.
At the same time, we have champions who have the experience and confidence to take on national-level challenges. One of our champions recently consulted with champions across the country so that he could respond to a request for information from the Supreme Court, who wanted to understand how the court could be made more accessible to persons with disability.
The beauty of the training that we offer is that champions rarely need to have introductions made; they know who to contact about the challenges they are facing, and they have been empowered to reach out on their own.
Peer-to-peer learning and networking is valuable for leprosy champions. Our team will connect champions with their peers at the local, state, and national levels.
In 2022, The Leprosy Mission hosted a national conference for leprosy champions. This was a great platform for learning, networking, and confidence building.
For many of the champions, this was their first time travelling to other parts of the country. This level of travel (sometimes even international travel) and exposure can make them something of a celebrity within their communities. Besides building confidence and creating stronger networks, these large events become a motivation for other community members to get involved and become champions themselves.
Building and empowering champions is not without its challenges. One of the biggest challenges is that champions are not paid for the work that they do. This means that, if we need a champion to come and speak at a state or national event, we are asking them to take time away from their jobs and potentially risk losing income. That’s often too big an ask.
Another challenge we see is when communities are resistant to the work of champions or respond negatively to them. Sadly, this is because of the deep-seated stigma that surrounds leprosy. It can be hugely disheartening for champions.
One of the roles that champions play is identifying suspected cases of leprosy within their community. Many are very good at this and want to take suspected cases over to the hospital to be checked out, but there are people in communities who would stick with their old beliefs, rather than paying heed to what the champions have to say about the importance of early diagnosis.
In each of these situations, the answers are often not easy. We work hard to be adaptive to the needs of our champions, we do our very best to offer the emotional support they need when they are facing setbacks, and we do our best to encourage them to keep lifting their voice, even when it can feel as though it is being lost in the wind.
There are so many success stories from our leprosy champions in India. Many of the biggest successes happen at the community level.
The champions are empowered to tackle any issues their communities are facing, whether they are issues-based challenges — child-marriage, domestic violence, or dowry harassment — or practical challenges, such as access to clean water and electricity.
Because of this wide focus within their communities, leprosy champions become known as people who can make a difference. It is great that communities can access clean water or protect vulnerable people, but it is an added bonus for us that the perceptions of leprosy are being changed because it is persons affected by leprosy who are transforming their communities.
There are two real success stories that come to mind from our leprosy champions.
The first is a lady in Allahabad called Anita. She has helped more than 100 people in her community get their identity cards. These identity cards are crucial for Indian citizens to access their rights and entitlements, but persons affected by leprosy with impairments face barriers to accessing these cards because you need a thumbprint or fingerprint to apply. Thanks to Anita’s advocacy efforts, people in her village have been able to access these cards for the first time.
The second champion is in Pune. She was forced out of education and into work at a very young age, but TLM India offered her support to get back into education. She is now an optometrist and she hosts free eye clinics in hard-to-reach communities for the elderly and marginalised. Out of her own pocket she provides these people with spectacles so that they can see.
With limited resources, we may not be able to pay these leprosy champions, but the least we can do is celebrate them and become their champions. That is why we host national conferences, give out awards, and write articles like this one, to celebrate the people at the coalface of ending leprosy.
As Nikita put it, ‘These are no armchair advocates, calling for change but not following it up. These are people working in their communities to bring real, tangible change for people who are struggling. We owe these people so much and the least we can do is recognise them and all they do.’
Photo credits: Sabrina Dangol
