By Mathias Duck and Tim Burton
by Mathias Duck (Global Advocacy Lead) and Tim Burton (Global Communications Lead), TLM International
For some years, the leprosy sector has been on a one-way journey towards a more significant and serious collaboration with organisations of persons affected by leprosy.
Within the wider NTD sector, it could be argued that leprosy is leading the way in this regard. And, whilst we should be proud of that fact, we shouldn’t consider that our work here is done; it is only getting started.
In November last year, we had the privilege of sitting in on the Second Global Forum of Organisations of Persons Affected by Leprosy, which was organised by the Sasakawa Health Foundation and took place in Hyderabad ahead of the International Leprosy Congress.
At that Forum, we heard from people who are excited about the future of their organisations and are frustrated that they extended a hand at the first Global Forum in Manila in 2019 that has not been sufficiently reciprocated by other leprosy organisations in the intervening years.
The below is a reflection from two people working at one of those leprosy organisation on what we heard in Hyderabad and what we think the response should be.
A small note: What we write is for a variety of audiences (other NGOs, persons affected by leprosy, governments, members of the wider NTD and disability sectors), but for the purposes of this article, when we refer to ‘we’, we mean leprosy NGOs and ‘them’ refers to the organisations of persons affected leprosy that were represented in Hyderabad. Although please keep in mind that there were a number who were not able to attend and whose voices still add value to the discussion.
There’s a well-known phrase in the disability sector: ‘nothing about us without us’, which has rightly been shortened to simply ‘nothing without us’. This is the very first thing we took away from Hyderabad.
This principle comes without caveat or qualifier; it needs no justification. In the room in Hyderabad were professionals who have started something from nothing, who have seen a need in their communities and worked to meet it. If we didn’t need their help, we would have seen and met those needs already.
This principle needs no justification, but if you asked for one, there it is. We sat in a room full of people that looked at the wider leprosy sector and said ‘you will never see everything you need to see or know everything you need to know to reach zero leprosy if we do not have a seat at the table’.
What does a seat at the table mean? What does it not mean?
It means the active involvement of organisations of persons affected by leprosy in the design of projects, in the development of strategies, in advocacy and communications about leprosy, in research, and in healthcare. It means that we develop our organisational strategies in tandem with organisations of persons affected by leprosy so that when they flourish, we do too.
It does not mean asking for the views of organisations of persons affected by leprosy so that you can say you have asked. It does not mean asking the same questions again and again. It does not mean only asking people you know will give you a safe answer or an answer in a language or cultural context that you can grasp easily.
In Hyderabad, we were sat in a room of people who had business cases for investing in their organisation, who had USP documents, and a wealth of connections and relationships that we struggle to have but certainly need. It was a room full of people who asked for a seat at the table in 2019 and had to ask again in 2022.
That’s not to say that leprosy NGOs did nothing to respond to what was said at 2019 – there has certainly been better representation since then - but the message from Hyderabad is that we didn’t do enough and we should do more. Given the current direction of travel, we’re hopeful that more will be done.
Organisations of persons affected by leprosy and leprosy NGOs want mutually beneficial partnerships, that much is not in doubt. We have a shared goal of zero leprosy and a shared compassion for anyone whose life has been damaged by the disease. What we took away from Hyderabad is that we need to be smarter about how we build mutually beneficial partnerships.
There may be a bit of a hangover from the charity model of development work that stops us seeing organisations of persons affected by leprosy as partners in the same way we would see another NGO. We need to start asking, what do you have that we want and what do we have that you want?
In Hyderabad, we heard that organisations of persons affected by leprosy can offer insights that we couldn’t possibly have, they offer access to communities that would not be so ready to trust us, they offer networks that can be mobilised and a voice with more legitimacy than we have.
They are also conscious of some of their own shortcomings. As NGOs, we have structures, history, and governance that allow us to access funding. We have digital skills that allow us to reach people online. We have knowledge in areas like research, programmes, finance and advocacy. We have international networks and regular conferences. And yes, we have money and resources.
Building mutually beneficial partnerships means looking at those two lists and considering how we best exchange talents and resources. The below are a few very quick ideas.
One of the key recommendations that came out of the Forum was that the digital divide be bridged. That could be as simple as TLM’s work with MAPAL in Myanmar, where we are providing basic IT skills. It could also mean that our digital communications and fundraising experts share their knowledge with representatives from organisations of persons affected by leprosy through training or mentoring.
If organisations of persons affected by leprosy do not meet the criteria to make funding applications on their own, then why not make them in consortium with NGOs? Equally, LRI has recently announced a funding call to boost the experience of junior researchers; something similar could be considered to boost the capacity of new organisations of persons affected by leprosy so that they one day meet the standards of more high-level funding calls.
We have experience of working in networks and through umbrella bodies like ILEP, NNN and IDDC, so perhaps we can share what we have learnt about effective ways of working through these structures.
When we work to build the capacity of our own staff in areas like finance or programmes, why not include organisations of persons affected by leprosy?
These are some of the things that The Leprosy Mission is considering for the coming years and our next Global Strategy, which will be launched at the end of 2024. No doubt other leprosy NGOs are having similar thoughts.
Listening to discussions in Hyderabad was humbling and we have written the above because, although there were some significant steps in the right direction, we believe The Leprosy Mission could have done more and we certainly aim to do more in the years to come.
If there is to be a third Global Forum ahead of the International Leprosy Congress in Bali in 2025, we hope the recommendations will not be a copy and paste of 2019 and 2022. We hope that the recommendations will reflect organisations that are taken more seriously as partners and that have the strength and confidence that comes with that.
If that proves to be the case, we will hopefully find that leprosy NGOs feel stronger and better equipped, as well.
