Justice starts with funding the experts - and that means Experts By Experience

For over 40 years, Disabled people have been the experts in social change and supporting our own communities. We broke out of forced institutionalisation and created places of our own. We ensured that the Convention on the Rights of Persons with Disabilities (CRPD) was the first human rights treaty developed with the active and sustained participation of Disabled people themselves. And we work tirelessly to end systemic ableism.  Yet the funding system still gives millions—disproportionately— to large charities headed up by non-disabled people who pretend to speak for us.

The Funding Justice Collective is changing all that. We are organisations and grassroots groups led by and for Disabled people and our own organisations (DPOs).

We demand that funders pass the loud hailer – and the money – to the people who know our needs best.

US.

The traditional funding system has failed to recognise the unique contributions and needs of disabled communities and favoured large charities that don’t have the insight of life lived as a Disabled person. As a result we then get ‘services’ which are not what we want and need, a culture of tokenism prevails and high salaries are awarded to those who oversee it all.

So we have produced a plan to change all that, based on those 40 years of LIVED experience.

We know how to equitably distribute funding back to the people and divest from organisations that speak over us.

This is a radical idea formed from the recognition that, until something fundamental happens to shift the narrative, change will be cosmetic at best. Equitable distribution of funding requires a co-production approach where people are asked what they need and are an equal partner in creating and evaluating the solutions. This might be via a Participatory Budgeting approach but there may be other good ways to achieve it we haven’t tried yet.

-          We believe it is essential that funders respond to the funding gap by co-producing with us to invest back into the disabled community.

Too much money is spent on salaries and infrastructure which benefits non-disabled people. Much of the difficulty Disabled people face in simply getting listened to could be overcome by their being in the driving seat with the necessary resources available to them.

Largely for resource reasons, the current campaign has been highly focused on a group of funders we have reason to think will at least hear us out and ideally be supportive of our approach. If we had the funding available, we could scale this up considerably. This would include:

• - Co-produced campaign materials which set out the Funding Justice vision in clear and comprehensible way

• - A social media campaign to promote the message on a much wider scale

• - Staff time to drive forward and oversee the enhanced campaign and communicate with new funders

We envisage being able to communicate with all the funders listed in the Directory of Social Change Trusts and Foundations Handbook. This would be a groundbreaking piece of work which would effectively be a mass-market communication to decision makers about how funding could be ‘done different.’ Even if they elect not to fundamentally change their distribution methods at this time, we will have sown the seeds of change for the future. We have always known that this is a long game.

Through our Roundtable with selected Trusts and Foundations in April 2026 we will:

1.       Engage in constructive dialogue with the resource holders and decision makers, making a well argued case for a radically different model which is centred in lived experience, not trustee opinion or system maintenance.

2.      Create alternative models for testing and debate, and pilot these

3.       Seek pledges on intent to change from current and future supporters

So far we have done what we’ve done on a shoestring and a considerable amount of goodwill and input from DPOs who support the cause. We have a supportive infrastructure body in Disability Rights UK which has supported and championed the work, and which can offer support in the areas of policy, campaigning and outreach. We also have a DPO Support Hub (DPO Support Hub | Disability Rights UK) which facilitates engagement with the organisations we exist to support. We are well placed to execute the hack and with some additional dedicated funding we can dial that up considerably through extra staffing time and support to our Intersectionality and Movement Building Manager, who leads on our Funding Justice work.

This hack could be a game changer to the charitable funding model in the UK. As stated, there is a massive disproportion of investment in non-DPO disability organisations, which substantially disadvantages DPOs and thus by extension, Disabled people.

This element of the project has not taken place as yet.