When help hurts: why leaders with disabilities are demanding fairer funding … and showing how it can be done

Across Africa and Asia, a growing movement of dynamic leaders with disabilities is speaking out about the awful realities of the current funding system – and offering bold, practical alternatives rooted in lived experience.

Picture this

Imagine you lost your eyesight in a childhood accident. Despite a lifetime of exclusion and discrimination, you’ve built a local organisation of disabled people and made real progress – like persuading your local government to improve inclusive health services.

Then, three international NGOs arrive in your area.

• One doesn’t “do disability” and replaces your inclusive services with less accessible ones.
• Another consults you, but then ignores your input and chooses different priorities.
• The third wants to “partner,” but that means they make the plan, you do much of the work, but you receive a tiny fraction of the budget with none of the overheads it actually takes to run your organisation or meet the burdensome funder reporting requirements. And they claim the impacts.

Sound familiar? Sound effective? Sound fair?

The Call for Change

It’s clearly time for some big changes. In response, the Fairer Funding campaign is growing and bringing leaders with disabilities, INGOs and funders together.

At its core are a group of dynamic leaders of organisations of persons with disabilities (OPDs) in Africa and Asia. They are bravely naming the problem. But they are also showing positive alternatives rooted in experience. You can hear from them in this short intro video to the Fairer Funding campaign.

“We know what our communities need. We know what works. Yet we’re constantly sidelined and underfunded. Forced to work under systems that don’t trust us to lead our own change. It doesn’t have to be this way.”
— Alan Herbert, Black Albinism

Extra barriers Faced by Youth-Led and Other Marginalised OPDs

Namwanjee Gorret, leader of Shared Sights Foundation, a youth-led OPD supporting young people with psychosocial disabilities, highlights another layer of exclusion:

“As young people with disabilities, we face biases about our ability to manage funds or lead impactful projects. We’re often excluded from key discussions where funding priorities are set.”

The Deeper Problem: Power, Control and Equity

Scader Louis, from the Spinal Injuries Association of Malawi, puts it bluntly:

“When funders retain control, they are forcing us to justify our strategies to people who may have no direct experience of our realities. Instead of trusting our lived experience and expertise, we’re made to fit into predefined boxes. Not only does this create a power imbalance, it also creates an upside-down reality, where funders, not people living with disabilities, decide what counts as progress.

Poorly designed funding doesn’t just fail to help; it actively weakens our movement capacity. Instead of building collective power, it often creates hierarchies, competition, and fragmentation—especially when only certain groups are seen as “fundable.” For our movements to thrive, support must be flexible, empowering, and rooted in trust. Only then will disability justice flourish.

What Fairer Funding Looks Like

In March this year, the campaign hosted its first Fairer Funding Webinar, chaired by Dr. Sarah Mwikali. It introduced the 5 point Call to Action and showcased alternative funding and programming models like Participatory Grant Making – funding that is led by and for persons with disabilities.

Speakers shared real-world examples:

• Yumna Omar Mmanga presented her experiences as both a fund designer and grantmaker in the Disability Justice Fund for Women, and grant recipient in the Youth with Disabilities Fund, both supported by ADD International.
• Yeni Rosa Damayanti shared her experience with the Disability Rights Fund.
• Nancy Nteere and Omar Bahati described the impact of unrestricted funding from AbleChild.

What’s the role of an INGO in all this?

You’ve probably noticed – this isn’t your typical blog for a Northern-based INGO or funder. And Fairer Funding isn’t your typical campaign either.

This blog isn’t about showcasing what ADD International is doing ‘for’ groups in the ‘Global South’ or putting ourselves at the campaign centre with carefully placed logos.

It’s about flipping that fully.

It’s about supporting leaders with disabilities to really lead their own global campaign. It’s about their voices being heard first and loudest. Yes, INGOs and funders need to act and speak out in solidarity where we add value. But it’s about them, not us.

Join the campaign for fairer funding

Momentum is growing. If you’re a funder, an INGO, or an OPD leader ready to explore change, you don’t need all the answers to join us.

You just need to feel deeply that change is needed and want to be active in a community that can learn together how to do it and how to move others to change too.

ADD International will continue to support. To join the Fairer Funding campaign, contact Vanessa at [email protected]