Disabled people’s organisations tell government: Big disability charities are ‘actively harmful’ to our movement

Disabled people’s organisations (DPOs) have made a plea to the government to listen to their “authentic” voices rather than disability charities that are not led by disabled people, which they say are “actively harmful” to their movement.

In a response to the government’s consultation on developing a new relationship with civil society, DPO Forum England and Disability Rights UK (DR UK) accuse non-disabled-led charities of seizing their language on empowerment but failing to share their access to ministers and other decision-makers.

They say the charities “financially benefit from talking about our oppression” and that the government should instead prioritise the “authentic” views of DPOs and ensure that “those directly impacted by these issues have real authority in the decision-making process”.

They tell the government in the response: “Non-Disabled People Led Organisations are actively harmful to DPOs and the Disabled people’s movement.

“They appropriate our language about empowerment yet do not share their access to decision-makers or people in power with us.

“They take up the majority of funding going into the disability space whilst not letting Disabled people lead their organisations, campaigns and policy work.

“This perpetuates the paternalistic and charitable marginalisation of Disabled people.”

They add: “Despite our 45-year track record in advancing disability rights and systemic change, we face substantial challenges in securing meaningful engagement and funding compared to disability charities not led by disabled people.

“These charities, often with larger budgets and established government ties, systematically overshadow our efforts, perpetuating a cycle in which non-disabled voices influence disability policy and community work.”

When it comes to government funding, they say, there were 1,457 government contracts awarded to just nine disability charities that were not led by disabled people in 2022-23, reaching a total value of more than £460 million.

This compares to just 148 contracts awarded to 90 DPOs, worth a total value of just £12.5 million in the same year.

The government consultation, which closed last week, was aimed at securing the views of voluntary organisations, charities and social enterprises on the government’s framework for a new Civil Society Covenant, which it hopes will improve collaboration between the government and civil society.

The forum and DR UK say in their response that they want the new covenant to provide a “strengthened mandate” in policy consultation and decision-making for those organisations that are led by members of the communities they represent, including DPOs.

DPOs should be “explicitly” prioritised in government consultations, decision-making processes and funding, they say, and provided with the funding they need to cover their accessibility and disability-related costs in these processes.

But they also say that the government should “deprioritise” disability charities that are not led by disabled people.

And they call for the same emphasis on engagement with DPOs to apply to local authorities.

They also want the government to incorporate into the covenant its obligations under article 4.3 of the UN Convention on the Rights of Persons with Disabilities, which states that governments should “closely consult with and actively involve” disabled people through their representative organisations when developing disability-related laws and policies.

The forum’s membership includes DPOs from across England, including DR UK, Inclusion London, Greater Manchester Coalition of Disabled People, Shaping Our Lives, The Alliance for Inclusive Education, Disabled People Against Cuts, Buckinghamshire Disability Service, and British Deaf Association.

Professor Peter Beresford, co-chair of the national service-user network Shaping Our Lives, told Disability News Service that it was vital that the government gave DPOs the funding they needed – and the “credibility and respect” – rather than funding disability organisations not led by disabled people.

He said these big charities “would probably have a big struggle to justify speaking for us but they’ve never struggled, and they’ve never justified stealing our voices.

“These are difficult days, with a Labour government that still needs to learn the lesson people voted against the Tories not for a continuation of its ideology but for democratic change.

“But we have right and rights on our side and as our numbers grow, we will get there.”

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