Opinion: There is a link between the disability and NTD sectors that I think is broken and needs fixing
By Mathias Duck, Global Advocacy Lead, The Leprosy Mission
Around 1.7bn people continue to suffer from Neglected Tropical Diseases (NTDs), a group of 20 preventable and treatable diseases that place a heavy burden on low-income regions of the tropics. Almost all of these NTDs can cause disabilities such as blindness, delayed physical and mental development, and serious physical impairments such as clawed hands, drop foot, and more.
Beyond that, disability happens when society puts barriers in your way and that can happen when you are diagnosed with an NTD, simply because of the stigma involved. The reason for the global attention on NTDs is actually because of their disabling effects, as few are directly linked to mortality.
Meanwhile, one in five of the world’s poorest people has a disability and the majority of this same population group are infected with or at risk from an NTD.1
The link between NTDs and disability is not only clear, it is massive and it affects an enormous percentage of the world’s population. This percentage of the world’s population is almost certainly the group of people who are living most on the margins, those people most at risk of being left behind by the Sustainable Development Goals and any effort to build back better after the pandemic.
Given that inextricable link between NTDs and disability, are we doing enough to forge links between the disability and NTD sectors?
I was at the United Nations’ CRPD Conference in June and despite the huge crossover between disability and NTDs, I heard almost nothing about NTDs (apart from what was said by my own delegation). Although there were other organisations that focused on NTDs tangentially, ours was the only NTD-specific organisation that was present.
Of course, conferences like this are not the only indicator of cross-sectoral engagement, but it did not feel like a good sign. So what could we be doing better, both at conferences like these and elsewhere? Where are there opportunities for easy wins and chances to better serve both persons with disability and persons affected by NTDs?
1 academic.oup.com
This is certainly an area for growth. How many NTD-focused organisations are making full use of the CRPD framework to ensure that persons affected by NTDs are accessing the rights that are owed to them by their governments? How many NTD organisations have submitted reports to the CRPD Committee or have made Universal Periodic Review reports that reflect on how governments are living up to their commitments to ensure rights for persons affected by NTDs?
Even more basic than that, are NGOs and organisations of persons affected working to ensure persons affected by NTDs aware of how their rights are enshrined by the CRPD? That governments are accountable for implementing this convention on the ground? The message now is that lots of countries have ratified the CRPD but many are not implementing it well. Disability organisations are having the discussion about how the CRPD can be implemented at the grassroots levels and the NTD sector should be a part of that, especially given that many NTD organisations have extensive grassroots networks and influence.
This ties in with what I was just saying. When disability organisations are having discussions about how to implement the CRPD locally, these discussions happen in many places, often within neighbourhoods. But a lot of those most productive discussions are happening at conferences and forums like the CRPD Conference and similar national and international disability events and these are the places where it is most productive for us to take part and seek broad influence. If NTD organisations are not present at disability-specific forums, we miss important opportunities to learn about the place of persons affected by NTDs within the much broader, more influential disability sector.
At the CRPD Conference in June, there were recurring themes around improving disability data through citizen-gathered data, growing participation among OPDs to increase influence among communities and stakeholders, and the aforementioned localisation of the CRPD, all of which prompted thoughts for me about the role of organisations of persons affected by leprosy. I think The Leprosy Mission is stronger for this knowledge, but we needed to learn more about this by engaging with and learning from our partners in the disability sector.
So my encouragement for other NTD organisations is not just to budget to attend the NNN conference, but to also attend the CRPD conference (and include persons affected in our delegations!) or to consider joining other disability sector networks, like IDDC or partnering with networks like IDA or DPI.
We needed to learn more about this by engaging with and learning from our partners in the disability sector.
The WHO tells us 16 percent of the world’s population has a disability. This compares to 1.7 billion people who are burdened by NTDs, a little under 20 percent of the global population. Although NTDs affect more people, the disability sector’s lobby is incomparably stronger. If you want proof of that, look no further than the fact that there is a UN Convention on the rights of persons with disability, something that is unimaginable for NTDs (and is actually unnecessary now, thanks to the CRPD).
Beyond that, there are stakeholder groups of persons with disability that feed into UN and government policy processes across the world, there are organisations of persons with disability who have united into umbrella organisations and partnered with NGOs to form strong lobbying blocks.
In the NTD sector, organisations of persons affected by leprosy are growing in strength and becoming formidable, but they are very much leading the way, with few other organisations of persons affected by NTDs displaying the levels of organisation that we see in the disability sector.
All this is a roundabout way of saying that the disability sector has a strong voice, one that has the ear of governments and the United Nations and has a human rights architecture that is already established through the CRPD to ensure that the voices of persons with disability are consistently heard, respected, and acted upon.
When we find our place within that architecture, NTDs might be a little diluted within the wider disability world, but I think we will find that we will have far more influence. There are opportunities for us to find our place in this wider disability sector and discover influence in significant moments coming up on the horizon.
In September there are two big meetings happening at the United Nations. The first is the SDG Summit, which marks the halfway point of the Sustainable Development Goals and is a key moment for states to restart our progress towards 2030 after the setback of the pandemic. There is also a high-level meeting on Universal Healthcare, when countries and stakeholders will have an opportunity to reinvigorate progress towards delivering health for all. Beyond that, in 2024, there is the Summit of the Future, a much broader, but potentially significant moment.
Each of these are moments when the NTD sector should be present and influencing discussions so that the needs of persons affected by NTDs are represented. To do this well, we might benefit from listening to and working with our more experienced disability sector partners.
16 percent of the world’s population has a disability. This compares to 1.7 billion people who are burdened by NTDs, a little under 20 percent of the global population.
If one in five of the world’s poorest people has a disability and the majority of this same population group are infected with or at risk from an NTD, then it follows that any NTD programmes should be disability inclusive. A better collaboration between NTD and disability organisations could enable us to secure accessible NTD interventions so that necessary medications and rehabilitation services are reaching everyone that needs them. If we design our programmes without disability in mind, we are failing too many people.
I’ve shared a lot of my own thoughts in this article and this is a topic that was covered quite well at the side event that The Leprosy Mission hosted at the CRPD Conference entitled, ‘Reaching the millions of under-represented people affected by NTDs’.
So my advice to you is, instead of reading any more from me, have a watch of that side event and learn from our very wise panellists, instead!
I write the above in the knowledge that at the local level there will be plenty of people collaborating across different sectors in powerful ways that most of us do not see. Those collaborations will be having an impact on the lives of persons affected by NTDs and for that I am grateful.
This article is not about those collaborations. I hope you will have read it and thought that there is a lot of space for growth at the level where agendas are set and key discussions are had.
I hope you will have seen that there is a lot to be learnt from the disability sector, who are so well organised and so confident in how they present themselves. I hope you will come away from this and be wondering about how you might reach out into that world and start to find a space for you and your organisation.
Mathias is TLM's Global Advocacy Manager and is a person affected by leprosy and is personally and professionally committed to involving persons affected in the fight against leprosy and its stigma.
