Don’t shut the door behind you
Dear Debriefers,
This article started over a pint in a crowded London pub.
There I found myself, once again, deep in a lively discussion with Peter and other fellow disability activists – the kind of conversation that starts during a coffee break at an event and ends up in a local bar. One term keeps coming up in these informal discussions that we find harder to talk about publicly: ‘gatekeeping’.
I am a Mad/disability activist from Peru living in Geneva. The term gatekeeping is relatively new to me. In Spanish, there is no equivalent word. But it felt both novel and familiar the first time I heard it to describe how some people control access to information, resources, and decision-making spaces.
In almost twenty years in the disability sector, I’ve seen time and again how an overzealous guarding of spaces and ideas can hinder progress. The very structures we create to organize and advocate can end up holding back new voices and ideas. These dynamics are especially important as our international movement confronts the need for a strategic reset.
When we get our foot in the door, we need to open it wider, not close it on those behind us.
Disability Debrief is supported on a pay-as-you can basis.
Preserving identity and power
Gatekeeping is common across movements. It’s a way to preserve the identity, integrity, and ultimately power of a group by carefully controlling who can join in and who remains outside. In smaller communities, where hard-won spaces and resources are particularly precious, the temptation to gatekeep can be even stronger. After all, when so much effort has gone into building something, the thought of risking it all can be daunting.
Protecting what we cherish is an instinctive response in life, but overprotection often comes with a high cost. Gatekeeping does more harm than good to our movement: it alienates the critical thinkers, deters creativity and innovation, discourages young people, and isolates us from other social justice movements. Even worse, it perpetuates existing power imbalances and benefits those already occupying positions of power and influence.
Gatekeeping doesn’t just come from the instinct to safeguard our spaces; it’s also a by-product of the system in which we operate. Governments and international entities frequently press us to consolidate our demands into a ‘unified voice’ as a way to engage with fewer representatives and demands. This may seem reasonable given the diversity and breadth of the disability movement.
However, the pressure to present a unified front incentivizes the control and centralization of our narratives, pushing minority or contrary views to the margins. As internal disagreements are sometimes used to weaken our stance, the instinct might be to sweep them under the carpet.
Who sets the agenda?
Historically, charities and international NGOs have played a prominent role in the disability sector, bringing both benefits and challenges. One of the most problematic aspects is when these NGOs, rather than Organizations of Persons with Disabilities (OPDs) themselves, dictate how resources are allocated and priorities are set. A glaring example is global funding dynamics.
Multilateral and bilateral funds tend to be channelled to international NGOs, mostly organizations from the Global North led by non-disabled people. They then get to decide how that is distributed among national OPDs. This arrangement is often justified as being pragmatic, based on the greater capabilities and reach of international NGOs. However, it sidelines local OPDs that lack the experience or contacts of larger NGOs, perpetuating a cycle of disempowerment, colonialism, and marginalization.
I believe that a better relationship between OPDs and NGOs is possible, and my personal journey has been intertwined with both. I am the co-director of the Center for Inclusive Policy (CIP), a disability think tank, and the current chair and former executive director of Sociedad y Discapacidad (SODIS) in Peru.
When I joined SODIS, it was recognized primarily as an OPD. Indeed, SODIS was established by renowned individuals with disabilities, such as Javier Diez Canseco. However, critical voices within the movement and a dose of self-reflection made us revaluate our mission.
We had a privileged position and we weren’t a membership-based organization. Acknowledging this, we decided to transition to an organization playing a supportive role. Since then, SODIS has leveraged its connections and resources to support grassroots organizations through partnerships, capacity building, technical assistance, and networking.
Umbrellas are made to be opened
Umbrella OPDs are coalitions of diverse organizations of persons with disabilities aiming to leverage their collective voice and resources for broader representation. They operate at local, national, regional, and international levels. The reason that the crisis at the International Disability Alliance (IDA) impacts the rest of the movement is that they are the biggest international umbrella OPD representing people with disabilities.
In theory, these coalitions comprise a broad spectrum of member organizations, representing different groups and interests within the disability community. However, the reality can fall short of this ideal.
The membership of umbrella OPDs sometimes fails to encompass representative organizations of marginalized groups, and the leadership tends to be homogenous, predominantly consisting of middle-class men. Moreover, with their larger scale and resources, umbrella OPDs frequently adopt a top-down approach that can sacrifice authentic inclusivity in decision-making. Smaller, less powerful groups are often excluded by the ways umbrella organizations set agendas, manage representation, and distribute funding. Some coalitions further exploit their advantaged position to consolidate power and shut out other organizations.
A cautionary tale on the importance of inclusive leadership comes from the changing landscape of the disability rights movement in Peru. For a long time, the Confederación Nacional de Personas con Discapacidad en el Perú (National Confederation of People with Disabilities in Peru, CONFENADIP) led and dominated the representation of persons with disabilities in the country, comprising 22 federations and over 200 grassroots organizations. However, its reach did not extend to all. In particular, smaller groups representing marginalized communities, like those with psychosocial and intellectual disabilities, found themselves on the periphery with little influence on the national agenda.
A leadership crisis within CONFENADIP created a void that was swiftly filled by the Mesa de Discapacidad y Derechos (Disability and Rights Platform), a civil society platform with more horizontal partnerships between smaller, historically excluded OPDs, NGOs and other allies. For example, they have a rotating secretariat, and all organizations get the chance to participate in the development of the work plan and commissions. Despite not having national representation, they’ve relatively quickly managed to replace CONFENADIP in most institutional decision-making spaces.
Shifts in activism and established leadership
The era of digital activism marks a shift in traditional disability activism through a rise in self-advocacy and disability influencers. These new avenues are redefining engagement, moving away from legacy organizations and carving out spaces where young activists can champion causes on their own terms.
This generational shift was highlighted by a study I recently worked on, soon to be published by the UN Youth Office and the Youth2030 Disability Task Team. Young advocates with disabilities from different regions are expressing strong desires to establish their own initiatives, separate from OPDs led by older adults. Many report feeling underestimated and sidelined in decision-making processes and advocacy platforms by older leaders.
Indeed, there are many OPDs in which the same individuals have occupied leadership roles for extended periods and are reluctant to cede spaces to the younger generation. We need leadership renewal.
The marginalization within activist spaces isn’t limited to the youth alone; critical voices, too, sometimes find themselves on the fringes. Through my involvement in user/survivor/Mad advocacy, I’ve witnessed seasoned leaders turning their backs on emerging activists simply for expressing divergent views or associating with people they don’t like.
In Latin American networks, I’ve been further confronted with ‘purgas’, purges. A ‘purga’ refers to the expulsion of individuals considered unwanted or problematic by the leadership. These campaigns often target people who hold different ideological or political positions, criticize the leadership, or are deemed as not committed enough to the cause. I’ve been told that a periodic ‘purga’ is necessary to ‘depurar’, purify, our spaces.
These practices aren’t representative of the disability movement as a whole. But they do occur and the incentives to remain silent are numerous – one might risk their position or face accusations of tarnishing the movement’s public image. It’s imperative that we find a way to discuss them.
The influence of privileged experts
The influence of ‘experts’ raises important questions about the more nuanced forms of power. I am referring to well-connected, Western-educated professionals from national or international organizations or academia who work in the disability sector. Many of them are not even persons with disabilities or connected to the movement.
Even if unintentional, the privileged voices of these individuals can overshadow those from grassroots organizations. They often hold significant sway and routinely advise those in power on a myriad of issues, from who should be invited to a meeting to who should receive funding. This influence puts in question the principle of ‘nothing about us without us.’
I’ve found myself in the position of ‘expert’ and I admit that I didn’t always engage in the necessary self-reflection. It’s easy to become comfortable with recognition and attention, or to believe that your role is apolitical and solely technical. Recognizing your own power and privilege can be challenging, especially when you also belong to a marginalized group.
Donors are sometimes more interested in finding and elevating ‘saviours’ than in building movements. When we find ourselves in positions of influence, we should remember that real leadership requires at times to step back and use our position to make room for fresh and diverse voices to lead. It’s about widening the gate, not closing it.
Policing of disability identities
Another gatekeeping practice is the policing of disability identities – the question of who qualifies as having lived experience of disability. This happens across regions and communities. For example, Leah Lakshmi Piepzna-Samarasinha has pointed out how in the United States, white-majority and white-lead disability groups have ‘gatekept’ Black and brown people with disabilities from embracing a disability identity and engaging in mainstream disability spaces.
I’ve also noticed identity policing within user/survivor/Mad communities. I’m aware of cases where people who openly shared their experiences of distress and crisis have been met with suspicion and even rejection within these communities. These reactions are not without context: until quite recently, persons with psychosocial disabilities were predominately ‘spoken about’ and ‘spoken for’ by others, such as doctors, experts, and family members. Such a history has led to an understandable fear of our lived experiences being co-opted.
Chris Maylea has noted that for many, especially those who cannot hide their user/survivor/Mad identities, there is a concern that some people in positions of privilege might exploit the ‘lived experience’ label to maintain their influence or to marginalize more radical viewpoints. However, centring the voices of those whose rights are most at stake can be achieved while simultaneously acknowledging and validating the wide spectrum of trauma and distress experiences.
There is one final concern I wish to address: insisting on a pure disability identity keeps us within a silo. It undermines our potential for building alliances with other movements by neglecting our shared experiences. It fails to acknowledge the intersectional and evolving nature of disability identity. If we want to expand our impact, we should embrace the full spectrum of our community, ensuring a more interconnected future for disability activism.
The imperative for change
When Peter asked me to write this piece, my first response was to ask if he was trying to get me kicked out of the movement. But the truth is many of us are engaging in this same conversation in various settings (including bars!) because we are deeply committed to our movement and wish to see it flourish and achieve its full potential.
These days, it feels as though we stand at a crossroads. We operate in a world in permanent crisis, within a failing international system, and amid a global backlash against human rights. Such a context calls for robust social movements to rise and counter these challenges.
Solidarity is embedded in our DNA. The disability rights movement was born from the convergence of various groups, each with its own unique narrative, demands, and struggles – all bearing witness to one another. It’s essential that we always remember these roots.
I would like to see a revitalized ecosystem that values multiple leadership and acknowledges the role of dissent. But that road ahead requires a frank evaluation of current power dynamics and toxic leadership styles, along with a principled commitment to addressing them. It’s about fostering spaces where diverse forms of belonging are welcomed, and solidarity and partnership are genuinely embraced.
Sharing spaces, questioning our ways of working, and engaging with those with whom we disagree can be uncomfortable. Yet, it’s precisely this discomfort that is crucial for growth, and we need to learn to embrace it. Because when we close a door on others, we are closing it for everyone.
Cheers!
Alberto
Acknowledgements
I’d like to thank Peter for inviting and encouraging me to write this piece, as well as for his guidance during the editing process. I also thank Victoria Lee, Liliana Peñaherrera, and Akriti Mehta for their generous feedback and review.
Disability Debrief is supported by the individuals and organizations that read it.