It is time for a radical rethink on how we distribute funding in the disability rights movement

I joined ADD International earlier this year, but I’ve been a disability rights activist my whole life.

Twenty years ago, I was leading a youth-focused disability rights organisation in the Kibera slum in Nairobi. I saw what a difference we were making to members’ lives, but accessing resources was a real challenge.

Large NGOs seemed to access all the available funds. They would take us on as partners but only pass on small amounts of money to organisations like mine. At one point myself and my colleagues weren’t paid a salary for eight months. That’s what it can be like running a grassroots organisation.

I became radical in my thinking about this sector and the work that we do because of the injustices I have witnessed and heard about. I’ve seen people in positions of power who are able to contribute to change choose to look the other way. All the while they demand endless so called “accountability”, regularly arranging last minute meetings and demanding and taking huge amounts of our time.

They would say they want to support and work with organisations like mine, yet deny them the resources they needed. I couldn’t connect those two things. I couldn’t understand how it could happen.

Eventually, we were able to access an unrestricted grant of £2,000. As a small, unregistered group, this was unusual and transformative. This money meant we could work freely in the way we knew would have the most impact, and it opened the door to more funding. Following this grant the organisation grew to become a national organisation working with disabled young people all over Kenya.

The other side of the table

In 2018 I switched to working in philanthropy and was struck with the reality of how little disabled people are represented in the sector. Suddenly I was sitting at the same table as those who had denied us sufficient resources and taken so much of our time. Those who had used my image and my work to generate funds that organisations like mine could never access.

I was in meetings I had never been able to enter before, as a fund seeker. I felt angry, but I knew I had to be smart. This was my chance to speak truth to power and make change, and people weren’t used to it. They could recognise the system was wrong, yet were not used to being called out. Change always happens incrementally.

I moved from being a grant seeker to someone who has a say in how funds were given out. I saw first-hand the power you hold, being able to distribute resources. If you use it well what change it can bring, and if you use it badly, how you become a conspirator and an ally of those who perpetuate inequalities.

Now I find myself bringing both sides of my experience together as co-CEO at ADD International. I am helping lead the organisation through a transformation to shift power to local disability rights groups and activists and become a participatory grant maker.

My co-CEO is Mary Ann Clements, the person who helped us secure that £2,000 grant that once helped a small organisation to grow. I know she is on the same page as me when it comes to what needs to change.

We first connected on radical ideas around development, the mechanism of how it was constructed and how it is often more disempowering than empowering. We were concerned about how organisations could access just about enough money to survive, when they could do so much more with the right funding. She, too, sees that this is unjust and needs to change immediately.

How change happens

Lots of people will say this change is not possible, so I want to show them that it can be done. We must work out how to shift the narrative to make sure everyone is on board. It doesn’t matter how much money you put towards change if people are not interested in changing.

I know this transformation is possible, and that every challenge we face will have a solution. I want to inspire others in the same way. Society is dynamic and we need to change and adapt continually if we are to realise a future free from injustices to disabled people globally.

We need to turn our radical diplomacy into action. Going out and speaking to those with the resources, offering them alternatives and helping them understand why we think they should invest with us and get resources to the right places. We want to be able to do this by acting as an intermediary and holding some of the perceived risk for those smaller organisations, founded by disability rights activists, that would never access resources without support.

Becoming a participatory grant maker

ADD International was founded on the values of listening to and supporting grassroots activists and organisations of people with disabilities. This is what we aim to get back to, our transformation is, in essence, a return to our roots.

Last month we consulted with disabled activists on how our new model for participatory grant making should work. We want to develop it together with the people who know best how to make change in their communities.

Working with organisations of people with disabilities (OPDs) is not just fair, its better. I’ve seen projects around disability involve no OPDs. When the project ends the work ends. OPDs being involved would likely have meant that work and those learnings would have continued long after the end of the project. The organisations would have been strengthened by it.

I know there are enough resources out there, they just need to be distributed more fairly. I hope other organisations will join us to make this happen because it’s what is needed to shift power and achieve the SDGs. We cannot work towards justice if there are still inequalities within our systems.