Building the Scaffolding

The Infrastructure Disability Activists Say They Need

We have spent the last several months talking to disability and other rights activists around the world. Though the emphasis and nuance differ across regions and rights struggles, we heard about how movements built on resilience and perseverance are now navigating a context far less open to rights and an ever more challenging funding landscape. As one activist noted, “people are waking up and realizing what they built is no longer working.” And yet, this moment also creates an opening to imagine a human rights ecosystem that is more connected, one that weaves together rights struggles across old boundaries and silos. 

The Medusa Project is co-creating the scaffolding needed to foster this cross-movement organizing in a rapidly changing world. We named this effort the Medusa Project for a reason. In a version of the myth, Medusa (one of three sisters living together at the edge of the known world) was transformed into a “monster” because of injustice, and it forced her to the margins, but Medusa remained in solidarity with her sisters and came to embody protection and resilience. We believe activists working at the margins and intersections, many of whom we have spoken with, have the clearest view of what this moment demands, not just to weather it, but to help jointly define what should come next.

Between Systems

Activists describe an ecosystem caught between an old, waning, more formal, and siloed model of human rights organizing and a new more agile, collaborative one that has yet to take shape. One disability rights activist explained, for example, how professionalization of movement actors into NGOs was “critical for progress and fit for purpose at the time,” but went on to say that needs today are different as activists grapple with a very different operating environment. Another activist pointed to the same problem from another angle: the legacy of a hierarchical movement built for an earlier time means that, as she put it, “existing infrastructure can work against adaptation.”

Activists also describe a movement that has little bandwidth to shape evolving rights spaces. As one practitioner put it, “the disability movement often joins conversations too late, arriving mid-race on issues like climate and AI.” He explained that the movement needs to “engage much earlier in conversations … rather than joining after frameworks have already been set.” The shrinking resource base compounds the problem: one activist described disability organizations as “chronically underfunded relative to the broader ecosystem,” often with too little left over for proactive ideation and organizing, especially across movements. 

Another concern raised across our conversations related to how rights movements are struggling to reach people in the spaces where they are. One interviewee noted, “Human rights information hasn’t evolved. Hundred-page PDFs and committee reports are inaccessible.” Formal advocacy, several practitioners suggested, often does little to change how people think about disability. One activist argued that more work is needed “using film, music, and sound to help people experience what harm means, not just understand it intellectually.” That kind of narrative work remains rare in the movement, not because it is out of reach, but because it has never been resourced as a key priority.  

Transitions Are Also Openings

We believe that moments of transition like this one open real opportunity and are exactly when infrastructure gets created or lost for good. But what gets built now must point toward what is emerging, not what once was. As one interviewee put it bluntly, “Nostalgia is not a strategy.” That is why the Medusa Project is focused on stitching together the connective infrastructure the human rights ecosystem needs now. 

Connective infrastructure is the practical, relational support that lets movements function, collaborate, and renew themselves, distinct from any single organization’s programmatic work or policy agenda. It is the underlying support structure that makes human rights organizing possible. Three design principles provide direction to the Medusa Project:

Focus on the intersections and margins. We believe the places where rights struggles grow and intersect are where the most generative structural shifts are already happening. Many of the activists we interviewed talked about how this work is invisible and underfunded. One interviewee put it plainly, “funding is challenging because it is siloed, and funders do not see or fund intersectional work.” Despite that, these activists persevere, demonstrating real agility in their efforts to raise the profile of work that others overlook. That resilience and creativity are important strengths in this chaotic moment between systems, and are already generating concrete ideas, like an intersectional mobile team that could provide cross-movement support to organizations in transition.

Facilitate peer learning across boundaries. The activists we spoke with underscored the importance of moving beyond simply consulting activists in other movements to organizing built on genuine partnership. One activist explained, “people with disabilities are brought in to show that consultation happened but are not asked to co-create.” What we heard repeatedly is the need for conditions that allow different parts of the human rights ecosystem to learn from and build with each other rather than operating in parallel silos. Activists want spaces that are accessible, inclusive, both virtual and physical, and not owned by any one organization or movement. These would support diverse groups to come together to do the dreaming work so essential to future organizing and provide peer support for risk-taking and real cross-movement experimentation. 

Function as a bridge, not a blueprint. The temptation in moments of crisis is to assume that a single architecture can hold everything or that a “big bet,” which often attracts donors, will provide an elegant fix. One social enterprise leader described how donor efforts to impose a blueprint from the outside can result in disability organizations carrying the work without the corresponding resources. The Medusa Project resists this impulse, recognizing that different kinds of collaborative spaces, not all of them permanent, will be necessary. What is needed is scaffolding that creates conditions for more equitable models of collective organizing, like networked fiscal sponsors able to provide nimble ways to pool risk, and for shared experimentation that tests new approaches while the ground is still shifting.

The Movement Has Always Had the Vision

Despite the worrying outlook, throughout our conversations, we were reminded that activists are not daunted. As one activist noted, “human rights, social justice, and disability rights have always been a long game, built on creativity, future thinking, and persistence.” The Medusa Project recognizes that the human rights ecosystem does not need a lesson in perseverance; instead, it needs the scaffolding that allows that tenacity and the vision already present across these movements to travel, survive, and scale.

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