Nothing about us without us: the balance of power in our world is shifting, and this is a reason to celebrate

This year, optimism has taken a bit of a beating. But we're not going to let it be beaten. Within the leprosy, disability, and development sectors, there are lots of 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 in this article, we want to focus on the million little ways that power and decision-making are heading in the right direction.

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 last year. 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 equaitably 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. The outcome documents and oversight committee from last year's Global Forum will mean that by the time the next forum happens in 2028, OPL leaders will be in the strongest position they have ever been. We gladly welcome that outcome!

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 (see right: Dinesh Basnet from IDEA Nepal at the UN's disability rights conference).

These are three examples of how we are working to ensure persons affected by leprosy are included, but there are many more ways this is happening. We are committed to continuing work on this in the years ahead so that persons affected by leprosy find a space for their voices across our work.

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.

Objectives of the network

Agreeing to a common understanding and narrative of the evidence-based changes required
Conduct evidence-based advocacy that increases awareness on health inequities and on the actions needed to address them
Enhance dialogue, knowledge sharing, and connections, as appropriate for action towards health equity

Workstreams

This network will operate through four workstreams in which persons with disabilities will have a key voice.

Build leadership on health equity among persons with disabilities

Elevate health equity for persons with disabilities as a political priority in health

Create a disability inclusive health sector

Establish robust indicators, evidence and monitoring

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.

Celebrating 15 years of TLM's Global Fellowship

At The Leprosy Mission, a crucial step was taken on this journey 15 years ago, when our Global Fellowship was established. As an organisation founded in 1874, we have spent many decades of our history operating in colonial periods, when European countries dominated. Thankfully, power is shared far more equally across our countries today through the Global Fellowship structure that was established in 2011.

This structure aims to ensure all of our Member Countries have a voice and an opportunity to input on the direction of the organisation. It is a structure that has served us well, and we continue to work on getting these relationships right.

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.

Countries that are now locally-governed

India
Nepal
Bangladesh
Timor-Leste
Myanmar
Nigeria
Niger

Countries that are on the way to being locally-governed

DR Congo
Ethiopia
Mozambique

Feel encouraged - things are getting better!

No matter how frustrating some global trends are today, we hope you feel encouraged by the fact that there are some trends that are absolutely heading in the right direction.

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 all the examples you will have seen in your life and work. Please feel encouraged by this - things are getting much, much better!