This is an excerpt from an article originally published in The Leprosy Mission International’s Leprosy Insights Magazine #18. You can read the full article here.
Within the leprosy, disability and development sectors, there are many reasons to feel hopeful, and one of the biggest reasons is our irresistible shift towards achieving the great disability rights slogan: Nothing about us without us.
All across our sectors, the power to influence change is moving into the hands of people and communities with lived experience of the challenges we are seeking to address. Perhaps we feel frustrated by the fact that the biggest decision-making offices in the world are held by individuals who create more chaos than progress, but here, we want to focus on the million little ways that power and decision-making are heading in the right direction.
Five Ways the Balance of Power is Shifting
1. Organisations of Persons Affected by Leprosy are getting stronger ever year
The third Global Forum of Organisations of Persons Affected by Leprosy (OPLs) took place in July 2025. It was the biggest and best Global Forum to date and reflects a wider push by the organisers, the Sasakawa Health Foundation, and other ILEP members to strengthen the skills, networks, and capacity of OPLs. This is a push that will ultimately see power in the sector shared more equitably between ILEP NGOs and persons affected by leprosy.
Perhaps 15 or 20 years ago, it would have been unthinkable that we would have so many OPLs across the world, never mind that they would be meeting together every three years to organise and learn together.
The Global Forum is an event that happens only once every three years, but it is a reason for optimism because it reflects the importance of the ever-strengthening OPLs in our networks.
2. Nothing about us without us in TLM
As the world’s oldest and largest leprosy-focused NGO, we at The Leprosy Mission recognise that persons affected by leprosy are our most important stakeholders. If our work does not meet their needs, then we are wasting our time.
Here are a few ways that we are working to ensure persons affected by leprosy have a voice within our work:
- A Task Force dedicated to inclusion: To help us deliver on the goals of our Global Strategy, we have established a Task Force that is looking at inclusion and the strengthening of OPLs.
- Inclusion in decision-making bodies: Many of our Boards of Trustees have at least one member who is a person affected by leprosy. Our Advocacy Working Group also has a requirement for two persons with lived experience to be represented. Many of our projects are now designed with the input of community members, as well.
- Creating space for OPL voices to be heard: Following recommendations by the NISC tool, we ensure, when we attend global conferences and advocacy events, we always include budget for persons affected by leprosy to be part of our delegation.
3. WHO’s Disability Health Equity Network
A new WHO initiative has been established to ensure health equity for persons with disabilities who often experience a range of health inequities, including earlier deaths, poorer health, and higher disease risk.
Inspired by the possibility of achieving health equity for persons with disabilities, governments, organisations of persons with disabilities, NGOs, universities, and many others have rushed to join the network. Persons with disabilities are going to have a central voice in this process.
4. Shifting of power from the Global North to the Global South
All across the development sector, questions are being asked about how we can shift power from regions like Europe and North America to the countries in which development work takes place across Asia, Africa, and South America.
Money and power has historically been dominated by rich, northern countries, but if we are to achieve sustainable global development, power needs to be shared more equitably.
5. Decisions made in-country by in-country experts
Over a number of years, The Leprosy Mission has been in the process of creating Boards of Trustees for all of our countries, so that decisions for those countries are made by in-country experts, rather than experts at a global level. For us, this is a sign of progress in our work and will lead to better results.
The fact that more people have control over the issues that affect them is overwhelmingly positive, and these five examples are only a small handful compared to what we are seeing in our work today.