Zero Discrimination
When governments need to change old laws that are discriminatory or write new policies that might lead to positive change, when global leaders need to be reminded of the commitments they have made to leave no one behind, when communities need to hear how their actions are harming persons affected by leprosy, the most powerful voice they could hear in that moment is the voice of someone who has experienced leprosy.
That is why we are committed to building a global community of self-advocates, people who are empowered to speak on their own behalf, rather than have NGO workers speak for them. We want self-advocates who are capable of representing the global community of persons affected by leprosy at all levels: local, national,
and international.
In 2022, TLM supported 11,225 people (7053 men and 4172 women) to be informed of their rights and trained in advocacy skills. This is a 425 percent increase in numbers compared to 2018 (n=2139), well above the 50 percent target we set for this indicator at the start of our current strategy.
Related to our work to support self-advocates is our partnership with Organisation of Persons Affected by Leprosy (OPLs) and Organisations of Persons with Disability (OPDs).
Active membership within these groups allows self-advocates to have a greater voice and visibility - increasing awareness of, and access to healthcare services, disability certification and benefits, micro finance and income generation training.
OPLs are increasingly playing an active role in several areas of leprosy control - early case detection; follow up for MDT completion; referral and support for complication care; and disability management. They are engaged in self-care practices for disability prevention and management, and peer counselling to support the mental wellbeing of their members.
Photo credit: Tom Bradley
Organisations of Persons Affected by Leprosy are a much more modern creation than leprosy NGOs like TLM, and there is an inevitable power imbalance between them and organisations like The Leprosy Mission, who have decades of history, networks, and finance.
It is important for us that we begin to address this power imbalance by building the capacity of OPLs. At the local level, our teams doing that through training and capacity building.
In 2022, we had an opportunity to grow the capacity of OPL leaders at the international level through the Global Forum of Organisations of Persons Affected by Leprosy.
This event was organised by the Sasakawa Health Foundation and was an opportunity for OPLs to come together in Hyderabad, India ahead of the International Leprosy Congress.
They met together to discuss the future of their organisations, how they would like to move forward, and to develop a list of recommendations for their future relationship with leprosy NGOs.
The Leprosy Mission supported 13 leaders to attend this Forum and to attend the International Leprosy Congress, which immediately followed on from the Forum.
Leprosy is both caused by and causes poverty. It is a disease that preys upon people who have poor immunity that is linked to nutrition and unclean water. Disability and discrimination because of leprosy too often make it hard for persons affected by leprosy to find and keep regular, sustainable work.
To solve this problem, The Leprosy Mission offers livelihoods support. In 2022, 20,305 individuals (67 percent of whom were women) received livelihood support from TLM.
Our livelihood support includes training in income generation activities, savings & financial management, market research, access to micro-finance, and seed money to set up and expand income-generation activities.
The majority of these individuals are part of self-help groups or cooperatives, which include persons with leprosy, persons with non-leprosy related disability and other low-income groups within the community.
In 2022, we supported 2,335 Self Help Groups (SHGs) with 26,574 members.
Primarily focused on income generation activities, savings and access to micro finance, many SHGs are adopting environmentally friendly and climate change resilient practices in farming and animal rearing.
The groups have also been a space for everything from encouraging self-care in order to prevent disabilities to informing communities about preventing gender-based violence.
©Ruth Towell
©Ricardo Franco
Whether our goal is policy change, attitudinal change within communities, better livelihoods for persons affected by leprosy, stronger networks of self-help groups, or networks of decision makers who are ready to listen to our message, the future lies with organisations of persons affected by leprosy (OPLs).
We are already seeing the impact they can have.
In Myanmar, they are the most effective speakers in communities when we host events to raise awareness of leprosy.
©Sabrina Dangol
In Bangladesh, they are providing the link between self-help groups and the disability support they need from medical professionals.
In Congo – and so many other countries – they are speaking with policymakers and ensuring the voices of persons affected by leprosy are heard at the highest
levels of government.
The empowerment of OPLs will be central to all areas of our work in the years to come, but the greatest innovation in our work to end leprosy discrimination will come through our partnership with them.
At the start of this report, we highlighted the fact that persons affected by leprosy are among those most at risk of being left behind in the global recovery from the pandemic. When OPLs are actively working to ensure persons affected by leprosy are not being left behind through sharing their insights and voices, this risk is far less likely to become a reality.
