We Wanted to Change the World

Dear Debriefers,

Over the past twenty years, I’ve grown older alongside the disability movement, shifting between roles in government, civil society, academia, and international advocacy.

It’s taken me on some unexpected journeys. I’ve visited inclusive schools in Canada and Moldova, psychiatric institutions in Zambia and Kuwait, and even travelled to North Korea. I met people I had long admired, including the late Judy Heumann and Kalle Könkkölä.

Along the way, I’ve changed, and so have the people who make up our movement. We’ve become more professional and increasingly entangled with the very institutions we once sought to change.  

And through this, I worry that something else has changed: the enthusiasm that fired early advocacy has faded. The machinery of “disability inclusion” has taken over, and much of our original mission has drifted away. 

About this edition

Alberto Vásquez Encalada is a Mad/disability activist based in Switzerland.

Kinanty Andini is an illustrator and digital artist, from Indonesia.

Disability Debrief can take an independent view on the disability movement, thanks to generous support from readers. Thanks to Katherine, Will and Zero Project for new subscriptions.

“We thought we would change the world”

There’s an Italian film I often return to: C’eravamo tanto amati (We All Loved Each Other So Much).

It follows three friends, once partisans during the Resistance in the Second World War. They reunite years later to find that time has worn away shared ideals. One reflects with disillusionment: “We thought we would change the world, but the world changed us.”

I kept thinking about that phrase this past December, as I stepped away from the work on international disability rights that had shaped the past decade of my life.

I needed a change—and I couldn’t help but wonder: had we changed the world at all, or just learned to live with it?

The movement needed to professionalise

When I started working in the disability sector in Peru, the negotiation of the UN Convention on the Rights of Persons with Disabilities (CRPD) was coming to an end. Adopted in 2006, the CRPD was the first comprehensive international treaty to recognise and protect the human rights of persons with disabilities globally.

The message everywhere was the same: to take advantage of this new opportunity, the movement needed to professionalise. 

We had to become policy experts—capable not only to explain the CRPD and its obligations to government officials, but also to design, implement, and evaluate our own initiatives to influence national laws and strategies. The goal was to move beyond isolated victories toward a more systemic approach to change. 

As a young lawyer, it felt like I had arrived at just the right moment. And for years, I followed a familiar blueprint: diving into international standards, advocating for legal reforms and national action plans, leading capacity-building efforts, monitoring progress, engaging with UN mechanisms. 

We mastered the language of technocrats, showed up to meetings, built the evidence base, and made our case. We learned to show restraint—because we wanted to be taken seriously.

The costs of becoming professional 

Professionalisation also demanded formalisation. Securing resources and legitimacy meant creating formal structures, strategic plans, and measurable outcomes—factors that favoured those with the right education, skills, and connections.

Professionalism isn’t neutral: it reflects Western, white, ableist, capitalist, and patriarchal norms. Many grassroots activists found it harder and harder to access funding or even be included in key discussions. 

A new elite emerged: more polished and sophisticated, but also more distant from the communities they were meant to represent. As we took charge, many were left without a place to contribute.

With the rise of lawyers in the movement, I used to joke that the social model was being replaced by the legal model of disability. These days, it doesn’t feel like a joke. What once centred lived experience and collective struggle now revolves around legal frameworks and institutional advocacy.

Through the window instead of the front door

Don’t get me wrong, legal reform matters. In fact, of everything I’ve been a part of, the legal capacity reform in Peru stands out.

It was the first major reform in the world to replace guardianship with supported decision-making. This meant recognising that all persons with disabilities have the right to make binding decisions about their own lives and to receive support they need, on their own terms. The Peruvian experience has been a model for others, including reforms in Colombia, Spain, and Mexico. 

But despite this progress, its fragility remains clear. Implementation has been an uphill struggle without a cultural shift, political will, or broad public support.

Disabled activists are incredibly resourceful. We find ways to create opportunities, to slip in through the back door, and to push reforms forward—even the ones that once seemed impossible.

Yet when we come in through the window instead of the front door, it doesn’t take long to realise that we don’t have the power to see those reforms through. Even the most celebrated reforms can be quietly reversed.

Disconnect between policy and progress 

Policy reforms are often treated as a measure of success in themselves. But how much of what we set out to do has really changed the lives of people with disabilities? Ask a global organisation leader, a UN official, or a grassroots activist, and you’ll likely get three very different answers. 

The disconnect became more evident to me as I contributed to the Global Disability Inclusion Report 2025. The report explores ways to advance disability inclusion amid global challenges. And it shows that while there have been important legal and policy advances, the lived realities of many persons with disabilities have not changed nearly enough. 

For example, gains in areas like inclusive education and social protection are often limited, uneven, or poorly implemented. In key sectors—health, employment, care—gaps remain persistent or are even widening. And some progress exists only on paper: frameworks may look CRPD-compliant, but enforcement is weak, and people’s daily experiences remain unchanged.

Stopped believing in change

Sure, change is slow. But I’m not convinced that’s the main issue. I feel we’ve drifted from our mission. 

The machinery of “disability inclusion” has taken over and moves at its own comfortable pace. Those organising on the ground—the ones with a real sense of urgency—are too often sidelined. And within that machinery, I worry that many have quietly stopped believing in change, resigning themselves to simply doing what their roles demand.

Listening to colleagues, and sometimes to myself, I worry we’ve settled for CRPD-compliant commitments, and forgotten what they were meant to stand for. Disability justice folks—who emphasise collective liberation—have been naming this for a long time: rights are not justice, and laws and policy cannot replace systemic transformation.

Policy doesn’t live in a vacuum. It needs pressure, mobilisation, and accountability to turn words into action. It needs strong disability movements: people who will organise when services fall short, mobilise when institutions fail to deliver, and protest when laws are ignored. Without them, even the most progressive reforms remain meaningless. 

Taking a Stand on Palestine

If there was ever a moment that made me see the deep divide between establishment advocacy and the kind of mission-driven organising that once defined our movement, it’s standing in solidarity with Palestine. 

In the aftermath of 7 October 2023, as Israeli attacks escalated in Gaza and the West Bank, most of the international disability community chose silence. Organisations of Persons with Disabilities (OPDs) and international Non-Governmental Organisations (NGOs) feared they would lose funding or allies. UN mechanisms and agencies, too, were largely unresponsive—even as mounting evidence pointed to genocide.

While establishment leaders stalled, many within the disability justice community responded—some fundraising, others boycotting. Together with a group of fellow organisers and advocates, we drafted a public statement to challenge the silence within the disability rights community and call for action. As Alice Wong reminded us, Palestinian liberation is disability justice.

Since then, we’ve stood with the Palestinian Disability Coalition and other Palestinian groups. Even now, as Israel starves Gaza, most establishment actors continue to look away—refusing to speak out, unwilling to act, or sidelining Palestinian voices.

As Palestinian disabled activist Shatha Abusrour recently stated at the European Parliament:

“Everybody knows. Everybody has got the knowledge. Everybody can get that knowledge. The problem is that we know but are choosing to appear as if we don’t.” 

This isn’t just about justice for Palestine. It raises a fundamental question: What does the disability rights movement really stand for?

Solidarity for all, money for some

At the last Global Disability Summit in Berlin, I couldn’t help but raise an eyebrow every time a multi-million-dollar NGO asked governments for more “solidarity” in the face of funding cuts.

First, because solidarity is rarely what drives governments—self-interest usually is. And second, because these NGOs operate in a completely different reality from grassroots organisations, to whom they allocate very little funding to begin with. What solidarity have they shown OPDs? 

Most OPDs live in a constant state of precarity, surviving on short-term, project-based funding. Many are forced to shift priorities to fit donor expectations rather than community needs.

International aid and global philanthropy can unintentionally contribute to the problem, fuelling competition over solidarity. Groups that should be working together end up bidding against one another. Gatekeeping thrives, younger activists are pushed out, coalitions fall apart. Survival comes first. And it creates a perverse incentive to report positive outcomes—even when we know the glass is half empty.

The result? A disability movement that feels increasingly transactional and less grounded in mission or solidarity. 

Career advancement replaces collective action

If professionalisation has drained the movement of its urgency, it has also drained it of its people.

Too many activists are caught in a cycle where career advancement replaces collective action. The path often leads from activist to NGO staff, from NGO staff to consultant, and from consultant to donor or UN official.

In many ways, it’s understandable. For people with disabilities, these roles are often among the few available pathways to decent income and job stability. They also offer a way to support the movement from within the system. I’ve made this journey myself.

But somewhere along the way, activism itself became undervalued. The ideal activist is now seen as the one who navigates institutional spaces or writes policy reports, rather than the mission-driven organiser.

Living in Geneva, I’ve been told more than once that it’s time to settle down, to stop pouring my energy into activist spaces, to apply for a nice job in the UN once and for all. And I’ve seen many young people buy into the story.

In the end, we lose our best organisers—and hand the agenda over to the “experts.”

Technical expertise should not define our movements

This isn’t about rejecting policy work or funding. Both are necessary. I’ve seen first-hand the value of initiatives like Center for Inclusive Policy’s fellowship programme, which supports persons with disabilities from the Global South to develop policy skills.

But not everyone needs to follow that path. Technical expertise alone should not define our movements, or strip them of their power. At its best, professionalisation should offer new tools to fight more effectively. 

Regrettably, in many disability organisations, professional staff haven’t reinforced the role of grassroots activists—they’ve absorbed it. As a result, advocacy has become more institutionalised, more technical, less confrontational, and less accountable to those it claims to represent. 

We also need to be honest about the limitations and complexities of grassroots organising—it’s messy, fragmented, and often under-resourced. But that’s exactly why we need an ecosystem where formal organisations with professional structures genuinely support, rather than replace, grassroots leadership.

Our movement needs people who refuse to accept injustice or settle for symbolic change—people who organise, protest, disrupt, and reimagine the world around them. People who don’t wait for a call for proposals or tailor their demands to institutional agendas. People who know that being close to power is not the same as having it.

The future has passed

There’s another moment in C’eravamo tanto amati that keeps coming back to me these days. Gianni, the idealist-turned-lawyer who chose wealth over principle, reflects: “The future has passed, and we didn’t even notice.” 

Over the past twenty years, the world has changed—politically, economically, environmentally. The landscape for human rights organisations and social movements has shifted dramatically. And in recent months, it feels like everything is falling apart. Yet much of the disability movement continues to follow the same playbook, as if the ground beneath us hasn’t moved. 

The CRPD gave us a roadmap, and its mechanisms have helped mobilise political will. But they’ve also kept much of our advocacy focused inward—locked in legal frameworks, technical processes, and institutional negotiations.

Despite our rights-based language, we remain disconnected from broader struggles. We have neglected meaningful alliances with movements for women’s rights, racial justice, economic justice, and queer justice—even when the struggles we face are profoundly interconnected. 

Being in the room is no longer enough 

This disconnect isn’t theoretical. I’ve often struggled to reconcile the tools and strategies of international disability advocacy with how grassroots activists actually work.

When we started RedEsfera—a Latin American network of Mad activists—I brought my usual toolkit: CRPD language, UN processes, strategic advocacy frameworks. But I quickly realised that many in the network didn’t see themselves reflected in global campaigns or donor-funded projects. They didn’t speak in “disability inclusion” jargon.

What mattered to most of my compas (fellow organisers and activists) was building alternative responses rooted in local knowledge and lived experience—from peer support networks and community workshops to art interventions and direct action—shaped by community priorities, not international agendas.

This insight feels especially urgent today. Worldwide, spaces for advocacy are shrinking, whether due to authoritarianism or crises weakening governments to the point where coherent policymaking is no longer possible. If donors only fund advocacy work, what are movements in these countries supposed to do?

The past two decades were about getting into the room, but the past few months have made it painfully clear: being in the room is no longer enough. 

If there was ever a time to reassess what we do and how we do it, it’s now. We need to think differently—not just about what we fight for, but how we fight for it.

We need Mad Thinking

The challenges facing the disability rights movement today didn’t appear overnight—they’ve been building for years, and they’re certainly not unique to our field. 

Participating in the Symposium on Strength and Solidarity for Human Rights offered me a rare opportunity to step back and reflect on these dynamics with activists and organisers from around the world, including on disability rights activism.

My experience with the Symposium – along with years of conversations with my friend Akriti Mehta about the state of the sector – made something undeniable to me: I was ready to move away from policy work and return to the disability movement for the harder, deeper conversations that felt closer to home.

That’s why Akriti and I are starting Mad Thinking: We want to create space for critical reflection, learning, and cross-movement solidarity—to rethink power, build new narratives, connect struggles, and ultimately strengthen disability organising.

We hope the name—beyond reflecting our Mad identities—evokes the need for disruptive ideas, being mad at the world as it is, and imagining futures long dismissed as too mad for the real world. 

Too often, the spaces where resistance should be thriving have fallen silent, tiptoeing around institutions for fear of losing what little access remains. We want to create space for collective Mad Thinking.

The future is passing. The only question is: Are we too afraid to notice it, or will we be the ones to shape it?

My enthusiasm is back. And I’ve got unas ganas locas de cambiarlo todo.

Alberto 

Outro

Further reading. For more on the Debrief about work on disability rights, see Alberto's piece about Gatekeeping, or Peter's reporting on unequal partnerships, the need for new leadership, or the sector coming together as it falls apart.

Mad thinking. See more about Alberto's new initiative Mad Thinking, and sign-up to get their updates. 

More from Alberto on socials: on Linkedin and Bluesky.

For more from Kinanty, see her on Linkedin.

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Connect. Get in touch. You can find Peter on Linkedin and Bluesky.

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Acknowledgements 

Thank you to Victoria Lee for her always sharp, thoughtful comments on my drafts, and to Akriti Mehta for her suggestions and jumping off this cliff with me.

Many thanks to Kinanty Andini for the illustration, and also to the readers and organisations that support the Debrief and make this work possible. 

And finally, a huge thanks to Peter Torres Fremlin, who edited this piece and always pushes me to write what I’m not quite ready to say.