What does it take to build a disability rights movement? And what can advocates working in different contexts learn from one another?
On 5 October 2026, Georgetown University’s Program in Disability Studies brought together three former CIP fellows for “Building Disability Rights Movements in Low and Middle Income Countries: A Global Conversation”. Scader Louis from Malawi, Esma Gumberidze from Georgia, and Aisyah Ardani from Indonesia shared their experiences, with CIP’s CEO, Daniel Mont, moderating the discussion.
The conversation moved from inclusion in daily life to building movements, influencing policy and learning across countries. Throughout, the speakers returned to people’s experiences, participation, and the supports that enable people with disabilities to participate on an equal basis with others.
Watch the recording.
From inclusion on paper to inclusion in daily life
Ardani opened by talking about both being and feeling included included. She described the gap between policy and reality in Indonesia, including the difficulty of translating commitments into practice and obtaining budget allocations for accessibility and reasonable accommodations.
Louis brought this question into the experience of attending a meeting in Malawi. “But then when you get to the meeting, you have to like the burden is on you to tell people […] the adjustments that need to happen for you to fully and meaningfully participate.”
The discussion then turned to how advocates can connect these experiences with evidence. Ardani described research with Formasi Disabilitas following the removal of people with disabilities from social protection benefit lists in Indonesia. Her team used stories from the community as a baseline to develop a survey: “We would like to capture every story and what they have been struggling into data.”
Gumberidze emphasized that government officials are duty bearers, with administrative resources and access to information. Mont also stressed the importance of training disability rights advocates in policy analysis, so they can advise on policies in a concrete, practical way.
Building movements around people's experiences
For Louis, building an effective movement starts with understanding the diversity of disability and the experiences of each group. Organizations can identify a shared barrier, build a coalition, and develop a demand that sets out what needs to happen, who needs to act, and what must change.
Gumberidze added that separate organizations for different disability groups do not always know each other’s needs. Learning more about one another can reduce competition and increase solidarity.
She also shared an example of mobilization in Georgia, where parents of children with Duchenne muscular dystrophy advocated for access to medication. Demonstrations, a media campaign, and fundraising brought people together. The funds supported wheelchairs, breathing machines, and a DMD center, while the Ministry of Health started negotiations for two medications. Gumberidze distinguished mobilizing around a specific case from mobilizing around major systems change.
Changing policies and the framework behind them
Asked what policies they would change, the panelists identified priorities in budgeting, political participation, employment, accessibility, and inclusive education.
Louis discussed Malawi’s Disability Trust Fund and the need for adequate budgeting across ministries, departments, and agencies. She also called for representation of persons with disabilities in Parliament, where laws and budget allocations are made.
In Georgia, Gumberidze highlighted a contradiction: disability status documents describe some people as unable to work, while the state has an obligation to promote their employment. She also pointed to the lack of accessibility focal points and institutional memory in municipalities.
Ardani identified budget allocation for accessibility, reasonable accommodations, and the curriculum for inclusive education as a priority in Indonesia.
Mont connected these examples to a change in the framework for social protection. He described changing social protection policies from a charity model to one that supports people to work and participate.
Learning across countries while respecting local knowledge
The speakers also discussed what advocates in wealthier countries might misunderstand about their contexts. Ardani highlighted culture, political situations, and bureaucracy. She described the importance of adapting approaches to the local context in Indonesia. She mentioned how a compassion frame might be more effective in her culture.
Louis challenged assumptions about the capacity of organizations of persons with disabilities: “Persons with disabilities know where exclusion is happening. They feel it, they experience it, and therefore they know how to deal with it and identify and remove the barriers”. Their knowledge and experience should be more respected.
Mont shared an example from Vietnam, where a translation of the Independent Living Movement as the Movement for Living Alone created a misunderstanding of the goal of equal participation in the context of extended families. The discussion emphasized respecting local knowledge and culture, alongside the principles of the Convention on the Rights of Persons with Disabilities.
Gumberidze also discussed how the general political situation affects disability advocacy, including inequality, democratic backsliding, and restrictions on civil society funding. Strategies that work in one place may not work in another.
During the audience discussion, Ardani described learning as a discussion in both directions. Mont highlighted the value of supporting connections across the Global South, so advocates can communicate and learn from one another. Gumberidze also urged advocates in wealthier countries to fight for their rights at home, because governments elsewhere use those countries as examples, and excuse their own inadequacies by pointing to those in wealthier countries.
Healthcare, autonomy, and choice
An audience question brought the discussion to medical treatment, disability identity, and equality. Gumberidze also raised the difficulty of talking about disability identity when basic needs remain unmet: “In a country where you have a desperate civil society, it’s very hard to force people to talk about disability identity”.
Mont added: “I don’t think medical and healthcare stuff is at odds with the social model of disability. What’s at odds is a loss of autonomy and choice among the persons with disabilities, in terms of what they think is right for them, what works for them”.
Ardani also spoke about the medical approach and quality of life, returning to the importance of embracing the choice and autonomy of people with disabilities.
