Author: Harry Chikasamba, LLM, PhD Researcher at ALL Institute and School of Law and Criminology, Maynooth University.
One of the painful things about disability advocacy is watching how consultation often plays out in practice. Organisations of Persons with Disabilities (OPDs)–organistions led by and for persons with disabilities–come prepared with detailed recommendations, grounded in lived experience. Governments listen politely, sometimes even warmly, but then proceed as if nothing was said. That disconnect–between being heard and being heeded–is, sadly, at the heart of the gap between rights promised and rights delivered.
The promise and the problem
For close to two decades now, I have worked in the space between law and lived experience, between what disability rights are supposed to look like and what they actually look like in practice. Article 4(3) of the UN Convention on the Rights of Persons with Disabilities (CRPD) contains one of the most transformative promises in human rights law. This provision, specifically, requires governments to “closely consult with and actively involve persons with disabilities” when making decisions that affect them. It is said that the CRPD was the first to make such an explicit oblige governements to talk to civil society groups on matters directly affecting them. Thus, Article 4(3) of the CRPD is understood as the legal embodiment of the disability movement’s motto: “Nothing About Us Without Us.”
That notwithstanding, here’s the sad reality: having a legal right to participation and experiencing meaningful participation, for persons with disabilities, are often worlds apart. Personally, I have watched governments check the consultation box while ignoring every recommendation made. I have seen OPDs invited to meetings after all the decisions were already taken. I have reviewed “disability-inclusive” policies drafted without any input from persons with disabilities that end up creating new barriers. The gap between the promise of Article 4(3) of the CRPD and its practice thus becomes not just disappointing but also undermines the entire purpose of the Convention.
Why this gap matters for my research
My PhD research is right in the middle of this gap. I am addressing two connected questions what the legal standards of participation under Article 4(3) of the CRPD actually require, and how OPDs experience participation in practice. The first question matters because “meaningful participation” is often in the eye of the beholder. More often than not, governments claim they have consulted, while OPDs on the other hand say they were just tokenised. Thus, without a clear understanding of what the law requires–drawing on nearly two decades of interpretations by the CRPD Committee–the group of independent experts that monitors implementation of and compliance with the CRPD–we cannot distinguish genuine participation from window-dressing.
But the second question is where my research approach becomes crucial. Legal analysis alone cannot tell us whether Article 4(3) of the CRPD is working or not. We need to hear from OPDs themselves, including listening to the sort of barriers they face, strategies that have worked, where their experiences align with or diverge from the legal standards and, ultimately, what meaningful participation actually look like on the ground.
Centering OPD voices
This is where my positionality shapes my research fundamentally. I am not studying disability rights from a distance. My daily work, the past 15 years or so, has involved supporting OPDs in local and international advocacy–drafting CRPD Committee submissions, coordinating policy responses, and analysing government commitments, among others. Beyond my advisory role at the World Blind Union, I have worked as a consultant in Malawi helping the Evangelical Association of Malawi to develop a Church Disability Inclusion Policy, and facilitating trainings for the Malawi Council of Disability Affairs (MACODA)–the body established under the 2024 Persons with Disabilities Act to promote and protect the rights of persons with disabilities in Malawi–on the new Persons with Disabilities Act and the Council’s mandate for handling complaints.
These experiences keep me grounded in the realities OPDs face, including the frustrations, the small victories, and the exhaustion of constantly having to fight for participation that is supposed to be a legal right. They also remind me that any research on Article 4(3) of the CRPD that does not center OPD voices is missing the basic point.
That is why, as part of my PhD research, I am conducting a comprehensive qualitative analysis of survey data from the International Disability Alliance (IDA), with over 1,400 responses from disability advocates worldwide. To achieve my goal, and fairly addresse my research questions, I have developed a coding framework to systematically analyse, using a reflexive thematic analysis method, to understand how OPDs experience participation in practice
How this research can drive progress
If you ask me, I do not expect my PhD thesis to suddenly make governments respect participation rights. But I do believe rigorous research that bridges law and lived experience can significantly contribute to progress in concrete ways. My research, specifically, will give OPDs the sort of evidence that cannot be dismissed as anecdotal. When patterns emerge across hundreds of responses from diverse contexts, it becomes harder to claim these are isolated complaints rather than systemic problems.
It also provides tools for advocacy. OPDs need clear analysis of what Article 4(3) of the CRPD legally requires to push back when governments claim they have “consulted” after a superficial process. At the same time, the research offers guidance for governments that genuinely want to get participation right. Many officials simply do not know what meaningful consultation looks like in practice, and evidence showing what works–and what does not–can inform better public policy design. Finally, this work contributes to the evolution of international disability rights jurisprudence. To this end, the CRPD Committee and other human rights bodies can use evidence-based insights about how participation functions in reality to refine their interpretations and recommendations.
In conclusion, Article 4(3) of the CRPD is radical because it insists that persons with disabilities are not passive recipients of policy but essential contributors whose expertise must shape it. Admittedly, my research alone cannot make this promise real, but by examining both legal standards and lived experiences–and by listening to OPDs themselves–I aim to strengthen the struggle to close the gap between rights on paper and rights in practice. That gap is where dignity is lost, where expertise is ignored, where “Nothing About Us Without Us” risks becoming an empty slogan. Closing it, therefore, means ensuring that being heard finally leads to being heeded–and that matters more than any thesis chapter ever could.
