Gayatri Sekar2 and Rejaul Karim Siddiquee3
‘Nothing about us without us’ sits at the heart of the UN Convention on the Rights of Persons with Disabilities (CRPD) (UN 2006), defining the standard for the meaningful engagement of persons with disabilities in development. In the Disability Inclusive Development Inclusive Futures (hereafter Inclusive Futures) programme, Organisations of Persons with Disabilities (OPDs) were drivers of change. Their leadership demonstrates the evolution towards a stronger call, ‘Nothing without us’, expanding this call to claim a central role for people with disabilities across all areas of mainstream development.
Disability-inclusive development is widely understood as development that responds to the priorities of people with disabilities and ensures that all stages of development processes are fully inclusive of and accessible to them (UN 2022). OPDs are central actors in advancing this vision. Their role is explicitly established in the CRPD, which mandates OPDs to bring the voices, experiences, and priorities of people with disabilities into decision-making processes at all levels (UN 2018a). General comment 7 (GC7) of the CRPD Committee elaborates this mandate by defining OPDs as organisations constituted of, led by, and directed by persons with disabilities, with a clear majority of persons with disabilities in their membership, governance, and decision-making structures. Importantly, GC7 clarifies that OPDs must be treated as independent actors in public life and development processes and not subsumed under service providers or general civil society organisations (UN 2018b).
Mim, tailoring and dressmaking
Photo credit BRAC Bangladesh
The global normative environment has also strengthened expectations that OPDs must be recognised as essential partners in realising disability-inclusive development. The 2030 Sustainable Development Agenda’s promise to ‘leave no one behind’ positions OPD participation as a necessary condition for achieving the Sustainable Development Goals (UN 2015). More recently, the 2024 Pact for the Future reaffirms civil society and OPDs within it as equal partners in advancing global commitments around equity, justice, and sustainability (UN General Assembly 2024). Against this backdrop, the Inclusive Futures programme provides a practical opportunity to examine how OPDs can exercise leadership within large-scale development initiatives, not merely as consultees, but as equal partners shaping design, implementation, and learning.
Situating OPDs as leaders is both a rights obligation and a matter of development effectiveness. OPDs are uniquely placed to mobilise community networks as they maintain strong, ongoing ties with their grass-roots constituencies. This often occurs through regular community meetings, peer-support activities, or outreach platforms that keep OPDs informed about the everyday barriers their members face, whether related to transport accessibility, navigating public services, or securing assistive devices. These channels allow OPDs to gather timely insights and co-create contextually relevant solutions.
OPDs also enhance accountability when mechanisms exist for their members to guide organisational priorities and review decisions. Elected committees, routine consultations, and consistent feedback processes strengthen their legitimacy as representative organisations. Under these conditions, OPDs serve as trusted leaders, ensuring that policies and programmes reflect lived experiences and that authorities remain attentive to disability-inclusion priorities. This form of accountability that is rooted in representation and grounded in community ties distinguishes OPDs from other civil society organisations and underscores their unique contribution to inclusive development.
The International Disability Alliance’s (IDA) global surveys on OPD participation show that although OPD visibility has grown, many still report unsatisfactory engagement, limited involvement in processes such as budget formulation, and persistent disparities for OPDs led by persons with intellectual disabilities, deafblind persons, and Indigenous communities, highlighting the need for formal consultation mechanisms, predictable financing, accessible information, and participation across all policy sectors (IDA 2022a). This broader landscape of uneven participation provides important context for understanding how systemic features of development practice influence OPD leadership.
Meaningful OPD leadership is shaped, in part, by the structural dynamics of the international aid system and by longstanding assumptions regarding OPDs’ organisational capacities. These dynamics are reinforced by hierarchical arrangements that position OPDs as implementers or consultees rather than as equal partners in programme design and decision-making.
The IDA’s aforementioned surveys on OPD participation also reported that OPDs remain significantly under-resourced to carry out their mandates independently and under adequate conditions (IDA 2020: 65). A subsequent technical paper identified a ‘vicious cycle’ in which limited organisational capacity constrains OPDs’ inclusion in development and humanitarian programming, and this exclusion, in turn, perpetuates capacity gaps (IDA 2022b: 43). In response, funders often involve intermediary organisations; however, evidence has also shown that working through non-governmental organisation intermediaries can restrict direct partnership with OPDs, limiting communication, participation in project planning, and access to capacity-building and investment opportunities (CBM Global 2022). Addressing these systemic challenges requires donors to ensure that OPDs are positioned to succeed as implementing partners by consulting them at all levels to identify participation barriers and responding through organisational strengthening, budgetary adjustments, and targeted training.
Concomitantly, OPDs bear their own responsibilities within the project cycle, particularly to consistently uphold their representative mandates. This requires them to articulate and advance the perspectives of diverse constituencies of people with disabilities, including those experiencing multiple and intersecting forms of marginalisation. Their participation should not compromise their role in raising concerns about practices that do not align with the CRPD. Strengthening OPD leadership is both an internal and external process. It requires attention to internal governance, representation, and accountability, as well as changes in donor practices. Funding modalities must allow OPDs to access resources directly. Partnership structures must position OPDs as decision makers from the outset, and accountability mechanisms must recognise OPDs’ representative mandate as a source of legitimacy.
The Inclusive Futures programme’s engagement of OPDs in mobilisation, training, and participatory learning illustrates the model of ‘shared leadership’ as articulated in GC7. Across Inclusive Futures projects, OPDs played a formative role in shaping mobilisation strategies and community engagement approaches. Complementing this practice, Inclusive Futures required international non-governmental organisation partners to embed meaningful OPD participation throughout the programme cycle by integrating OPD engagement into design documents, prioritising OPD involvement in start-up workshops, submitting OPD engagement plans, reporting against OPD-related indicators, and participating in structured learning initiatives. Together, these measures operationalised the central principle of GC7: that the representative and independent character of OPDs positions them to identify barriers and develop solutions in ways not replicable by other actors.
Structural and budgetary inequities could undermine full alignment with the CRPD, and meaningful implementation requires OPDs to have a decisive role in programme design and financing. When excluded, their representative mandate weakens, and trust among their constituencies is eroded. Inclusive Futures’ projects worked to overcome such embedded operational barriers by utilising mechanisms such as fiscal sponsorship and allocating resources to OPD-led technical expertise, including contributions from IDA staff.
The experiences of the Inclusive Futures programme demonstrate that the normative commitments of the CRPD can be operationalised at scale. However, they also resonate with broader sector concerns, both of shrinking development budgets and a technocratic approach to mainstreaming without focused investment in OPD leadership; together, these deepen the risk of eroding past advancements. Shifting from disability-specific programmes to mainstreaming offers the potential for more systemic and sustainable change, but this is only achievable with clear expectations, accountability mechanisms, and continued resourcing of OPDs. Otherwise, the progress made through disability-focused initiatives may be lost with no assurance of replacement. To keep the momentum going, funders must retain dedicated disability-inclusion expertise and establish frameworks that embed OPD participation throughout programme cycles, to ensure that OPDs can shape and monitor mainstreaming efforts.
Meaningful change is neither optional nor accidental but built through sustained investment in OPDs. And when OPDs lead, systems shift, and ‘nothing without us’ becomes the engine of real change.
1 This issue of the IDS Bulletin was supported by UK aid under its flagship Disability Inclusive Development (DID) programme. The DID programme was delivered through two separate programmes. The eight-year consortium intervention, Disability Inclusive Development Inclusive Futures (Inclusive Futures) programme, led by Sightsavers and the International Disability Alliance, ran from August 2018 to March 2026. It has reached more than 19 million people and generated almost 300 learning and evidence resources to inform policy and practice on disability-inclusive development. The evaluation programme, the Programme for Evidence to Inform Disability Action (PENDA), was delivered by the London School of Hygiene & Tropical Medicine. The opinions expressed are the authors’ own and do not reflect the views of the funders.
2 Gayatri Sekar, Senior Officer, Learning and Community Engagement, International Disability Alliance, India.
3 Rejaul Karim Siddiquee, Advocate, Supreme Court of Bangladesh.
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© 2026 The Authors. IDS Bulletin © Institute of Development Studies | DOI: 10.19088/1968-2026.164 This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 International licence (CC BY), which permits unrestricted use, distribution, and reproduction in any medium, provided the original authors and source are credited and any modifications or adaptations are indicated.
The IDS Bulletin is published by Institute of Development Studies, Library Road, Brighton, BN1 9RE, UK. This article is part of IDS Bulletin Vol. 57 No. 1 March 2026 ‘Building Disability-Inclusive Futures’; the Introduction is also recommended reading.