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The Power of Participation: How Philanthropy Can Center People on the Margins

By Diana Samarasan & Katy Love
July 2024

At a recent funder gathering, a draft theory of change was discussed that was designed to support vulnerable people’s ability to be adaptive and resilient. However, the “vulnerable people” were not the ones setting funding priorities; in fact, they were not in the room. This all too common scenario, in which those holding the purse strings make decisions about what will improve life for others, is very familiar to people on the margins and especially disabled people.  

U.S. disability rights activist Ed Roberts said “If there is one thing we have learned from the civil rights movement in the US, it’s that when other people speak for you, you lose”. A charity approach, in which ‘beneficiaries’ are the object of donations or ‘care’, is directly opposed to the famous disability rights slogan which originated in the South African disability movement: “nothing about us without us.” 

Origins of a Tool Designed to Transform Philanthropy

“Nothing about us without us” – and its international legal rendering, the Convention on the Rights of Persons with Disabilities –  inspired the Disability Rights Fund and many other grantmakers to address participation not only as a human rights goal, but as a means to achieve that goal. Building on diverse models ranging from giving circles to mutual aid to community funding, these funders designed structures to involve community members in grants decision-making – now known as participatory grantmaking

A shared commitment to the principle of participation in philanthropy united us in the early 2010s.  At the time, Diana was the founding executive director of the Disability Rights Fund, and Katy was the director of grantmaking at the Wikimedia Foundation, the nonprofit that stewards Wikipedia. Together with a number of others who shared a dedication to participation, alongside other feminist, anti-racist, anti-ableist, and trust-based approaches, we began collaborating to influence philanthropy writ large to undertake participatory grantmaking. We held a deep focus on how philanthropy was done and felt that ensuring communities are the ones setting strategy and making funding decisions was not only the right way forward, but also the smart way forward. 

Yet, participatory grantmaking addresses only one part of a much larger philanthropic system. Too often the grant strategy, the definition of success, grants budgets, due diligence and reporting requirements, communications, investments, and more, are still made by those at the top of traditional power structures.

The need to address numerous systems that create barriers is well-known to the disability community. As the Disability & Philanthropy Forum’s previous executive director, Emily Harris says in a blog, “…that social barriers prevent people from thriving is in part similar to a framework known as the social model of disability, which holds that environments, attitudes, and systems create disabling barriers to full participation in society. This model largely underlies the disability rights and disability justice movements.” 

The Advancing Participation in Philanthropy Tool Can Help Bring Meaningful Change to Foundations

Shifting power requires deeper structural change. In a recent Q&A with Ben Wrobel, co-founder of Proximate, we asked, “What does it matter if decisions about grants are made by members of the community if all of the parameters surrounding those grants are still determined and owned by those in power?” 

To help philanthropy shift power, we developed a self-assessment tool – the Advancing Participation in Philanthropy Tool (APPT). This tool was created through a robust participatory process, and has been through several iterations. It was piloted by 19 diverse foundations. Some stories of its use are documented on the website.

The APPT helps users look at the entirety of a foundation’s operating structures, from governance, to grants administration, to monitoring, evaluation, and learning – and beyond. It is designed to enable foundations to assess their current levels of participation along a participation spectrum. The spectrum begins at “no or limited participation” and ends with “full participation.” Eight organizational “functional areas” offer a deep dive into a range of foundation activities including Communications, Governance, and Fundraising. They are organized with key indicators, questions, and statements that help users identify where a foundation lies on the spectrum. The APPT can be used to take the pulse of a current moment in time, and to identify the levels of participation desired. 

The tool is available in multiple versions: an interactive online version, a downloadable PDF report, and an accessible Word document. We see the tool – like all participatory practices – as a living process and are continuing to learn about its use and make changes, as well as produce new material and guidance. After you check it out, please let us know how the tool works for you. We’re eager to hear from you.

The APPT is one easy way to begin the conversation about how grantmakers can explore participation of people with lived experience. But it can also be a way to deepen existing participatory practices. No matter where your foundation is right now on its journey to shift power to those impacted by your funding, this tool can gauge the status quo and help you create an action plan to continue to iterate towards justice.