About us without us: should disability charities be led by disabled people?

The debate in brief

"Nothing about us without us" has been the defining principle of the disability rights movement since the 1990s. It asserts that disabled people should be the primary decision-makers in the organisations, policies, and services that affect their lives. The principle is enshrined in the UN Convention on the Rights of Persons with Disabilities, which the UK ratified in 2009.

Yet the reality of the UK disability charity sector looks very different. Many of the largest and most visible disability charities -- organisations speaking on behalf of millions of disabled people, influencing government policy, and raising hundreds of millions of pounds -- are led by non-disabled chief executives and governed by boards with little or no disabled representation. Scope, Mencap, the National Autistic Society, and others have faced sustained criticism from disability activists who argue that these organisations speak for disabled people without being accountable to them.

Against this stand Disabled People's Organisations (DPOs) -- user-led bodies where disabled people hold the majority of board positions and leadership roles. These organisations argue that representation is not a nice-to-have but a matter of legitimacy. If a charity claims to act in the interests of disabled people, those people should control it. The tension between large, well-funded charities "for" disabled people and smaller, underfunded organisations "of" disabled people is one of the most charged debates in the UK sector.

Quick takeaways

The arguments

The case for disabled-led organisations

The argument is grounded in both principle and evidence. The principle is straightforward: decisions about disabled people's lives should not be made by people who do not share their experiences. The medical model of disability -- which treats disability as an individual problem to be fixed -- historically positioned non-disabled professionals as the experts. The social model, developed by disabled activists in the 1970s and 1980s, reframed disability as a product of social barriers, and insisted that disabled people themselves are the experts on those barriers.

Disabled People's Organisations emerged directly from this movement. The British Council of Disabled People (later the UK Disabled People's Council), Disability Rights UK, and Inclusion London are examples of organisations led by and accountable to disabled people. Research by the Office for Disability Issues in 2011 found that user-led organisations were more effective at understanding and responding to the needs of disabled people, and that their services scored higher on user satisfaction.

The argument extends beyond service delivery. When large charities lobby government on disability policy, they wield influence shaped by their organisational perspective -- which may diverge from what disabled people themselves want. The Independent Living movement, led by disabled activists, has been explicit: charity-led advocacy that does not centre disabled voices risks reinforcing paternalism, even when well-intentioned.

The case for large disability charities

The largest disability charities command resources, public recognition, and policy influence that most DPOs cannot match. Scope had an income of around 47 million pounds in 2023/24. Mencap's was around 200 million pounds. These organisations run services -- supported living, employment support, helplines, education -- at a scale that small user-led bodies cannot replicate.

Defenders of these charities argue that operational scale requires professional management, and that the skills needed to run a 200-million-pound organisation are not defined by disability status. They point to co-production initiatives -- involving disabled people in service design, governance, and strategy -- as evidence that large charities are listening. Scope's shift toward campaigning on the social model of disability, and Mencap's increased focus on self-advocacy, represent genuine changes in approach.

There is also a practical argument. Many disabled people face barriers to taking on leadership roles -- inaccessible premises, the benefits trap, lack of reasonable adjustments, the additional time and energy costs that disability imposes. Expecting disabled people to lead organisations on a voluntary or poorly paid basis, while the sector's non-disabled leaders draw six-figure salaries, is its own form of inequality. The solution, this argument goes, is not to replace non-disabled leaders but to remove the barriers that prevent disabled people from competing for those roles on equal terms.

The funding gap and the power imbalance

The structural inequality between large disability charities and DPOs is stark. Government funding for user-led organisations expanded under the Labour government's 2005-2010 Independent Living Strategy, which invested in Centres for Independent Living and DPULOs (Disabled People's User-Led Organisations). The coalition government's austerity programme from 2010 reversed much of this. Inclusion London reported in 2023 that the number of DPOs in London had fallen by more than half since 2010, with many closing entirely due to loss of local authority funding.

Meanwhile, the largest disability charities continued to grow, fuelled by government contracts, fundraising income, and public profile. The imbalance is self-reinforcing: funders and policymakers turn to the organisations they know, which tend to be the large charities; DPOs, lacking the resources to maintain visibility, are excluded from the conversations that shape their funding environment.

The Disability Charities Consortium -- a grouping of the largest disability charities -- has been criticised by disability activists for positioning itself as the representative voice of disabled people in policy discussions, despite its members not being disabled-led. The tension is not about good intentions; it is about who holds power and resources, and whether the structures of the charity sector replicate the same exclusions disabled people face elsewhere.

The evidence

Quantitative data on disabled representation in charity leadership is limited, but the available evidence is consistent. Sector surveys have consistently found that disabled people are significantly underrepresented on charity trustee boards -- estimated at roughly 3% -- against around 24% of the general population who are disabled (Family Resources Survey, DWP 2022/23). Disability representation at chief executive level across the voluntary sector is not systematically tracked, but sector surveys by ACEVO and others have consistently found it to be very low.

Research commissioned by Disability Rights UK in 2022 found that fewer than 15% of disability charities in a sample of 50 had a majority of disabled board members -- the threshold for classification as a DPO. Among the ten largest disability charities by income, none met the DPO threshold at the time of the research.

The evidence on the effectiveness of user-led organisations, though limited in scale, is positive. The Office for Disability Issues' 2011 evaluation of user-led organisations found higher user satisfaction, stronger advocacy outcomes, and greater responsiveness to individual needs compared with traditionally structured services. Qualitative research by Inclusion London and the Reclaiming Our Futures Alliance has documented how DPO-led services produce better engagement with disabled people who distrust mainstream provision.

Internationally, the Committee on the Rights of Persons with Disabilities has repeatedly criticised the UK for insufficient consultation with DPOs in policy development, most recently in its 2024 Concluding Observations on the UK's periodic report.

Current context

The debate has intensified in recent years. The Disability Rights movement's criticism of large charities has become more visible through social media and campaigns such as #NothingAboutUsWithoutUs and #CharitySoWhite (which intersects with racial justice dimensions of the same debate). Several large disability charities have responded with governance reforms: Scope appointed its first disabled Chair, Robin Millar, in 2020, and Leonard Cheshire committed to achieving a majority-disabled board by 2026.

However, structural change remains slow. The Charity Governance Code, revised in 2025, strengthened its language on diversity and elevated equity, diversity and inclusion to a standalone principle, but stopped short of requiring organisations serving specific communities to include members of those communities in governance. The Charity Commission has not issued specific guidance on disability representation in charity leadership.

Funding for DPOs continues to decline. The government's 2025 disability strategy consultation acknowledged the importance of user-led organisations but committed no new ring-fenced funding. The Strengthening Disabled People's Organisations programme, run by Disability Rights UK, provides capacity-building support but cannot address the fundamental resource gap.

The broader equity, diversity, and inclusion debate in the sector -- explored in the DEI in sector debate -- provides context, but disability representation raises distinct questions. Unlike other dimensions of diversity, the disability rights movement has a specific organisational model (the DPO) and a specific political demand (that organisations affecting disabled people's lives must be controlled by them). This is not a request for better representation; it is a challenge to the legitimacy of non-disabled leadership.

Last updated: April 2026

What this means for charities

Disability charities that are not disabled-led face a legitimacy question that will not go away. The minimum credible response involves genuinely sharing power -- not through advisory panels or consultation exercises, but through governance structures where disabled people hold decision-making authority. Co-production is meaningful only when it includes the power to say no.

For funders, the implication is clear: if you believe disabled people should lead decisions about their own lives, you need to fund the organisations they lead. Directing the majority of disability-related funding to charities run by non-disabled people, while DPOs close for lack of resources, is a policy choice with consequences.

For the sector more broadly, the disability rights critique poses a question that applies far beyond disability. If charities exist to serve a particular community, what obligation do they have to be led by that community? The answer the disability movement gives -- that this is not optional but essential -- challenges assumptions about professional expertise, governance conventions, and who gets to speak for whom.

Common questions

What does "nothing about us without us" mean?

The phrase has its roots in disability activism in the 1990s and was adopted as the guiding principle of the UN Convention on the Rights of Persons with Disabilities. It means that disabled people should be centrally involved in -- and ideally leading -- the decisions, policies, organisations, and services that affect their lives. It rejects the idea that non-disabled people can adequately represent disabled people's interests, however well-intentioned.

What is a Disabled People's Organisation?

A DPO is an organisation where disabled people hold the majority of board positions and occupy key leadership roles. The model is defined by control, not just consultation: disabled people do not merely advise but govern. Examples in the UK include Disability Rights UK, Inclusion London, and the network of local Centres for Independent Living. The widely used threshold is that disabled people hold the majority of board positions.

Why are DPOs underfunded?

Multiple factors contribute. Government funding for user-led organisations expanded between 2005 and 2010 but was cut sharply during austerity. DPOs tend to be smaller and less well-known than the large disability charities, making them less visible to funders. Competitive tendering processes often favour larger organisations with the capacity to submit complex bids. And the fundraising landscape rewards public profile and brand recognition, where large charities have an inherent advantage.

Have large disability charities changed their approach?

Some have made significant commitments. Scope reoriented its public campaigns around the social model of disability and appointed a disabled Chair. Leonard Cheshire committed to a majority-disabled board. Mencap has invested in self-advocacy programmes. But critics argue that these changes are often incremental, reversible, and insufficient -- adjustments at the margins of organisations whose fundamental power structures remain unchanged.

Does the social model of disability matter to this debate?

Centrally. The medical model treats disability as an individual condition to be managed by professionals. The social model, developed by disabled activists, identifies disabling barriers in society rather than in the individual. Organisations built on the medical model naturally position non-disabled professionals as experts; organisations built on the social model position disabled people as experts on the barriers they face. The question of who leads a disability charity is inseparable from which model of disability it operates under.

What does the law say?

The Equality Act 2010 protects disabled people from discrimination and requires reasonable adjustments. The UN Convention on the Rights of Persons with Disabilities, ratified by the UK in 2009, requires states to consult with and actively involve disabled people's organisations in decision-making. The Charity Commission requires trustees to act in the charity's best interests but does not mandate that beneficiary groups be represented on boards. There is no legal requirement for disability charities to be disabled-led, but the CRPD creates a strong normative expectation.

Key sources and further reading

• UN Convention on the Rights of Persons with Disabilities -- United Nations, 2006. The foundational international treaty establishing disabled people's right to participate in decisions affecting them.

• Concluding Observations on the UK -- Committee on the Rights of Persons with Disabilities, 2024. The UN Committee's most recent assessment of UK compliance, including criticism of insufficient DPO involvement.

• The State of Disabled People's Organisations in London -- Inclusion London, 2023. Detailed mapping of the decline in DPO numbers and funding since 2010.

• User-Led Organisations Project Evaluation -- Office for Disability Issues / Department for Work and Pensions, 2011. The key government evaluation of user-led organisation effectiveness.

• Reclaiming Our Futures Alliance -- ROFA, ongoing. A coalition of disabled people's organisations advocating for a National Independent Living Support Service.

• Taken on Trust: The Awareness and Effectiveness of Charity Trustees in England and Wales -- Charity Commission, 2017. Includes data on trustee diversity, including disability.

• Family Resources Survey 2022/23 -- Department for Work and Pensions, 2024. The primary source for disability prevalence data in the UK.

• Charity Governance Code -- Charity Governance Code Steering Group, 2025. The voluntary code of governance practice for UK charities, including a standalone equity, diversity and inclusion principle.