Shot of businesswoman in wheelchair at business meeting in the board room. Paralyzed woman in a … [+] wheelchair at meeting with her colleagues in the office.
Discussions about the lack of disability representation in the boardrooms of non-profit organizations, particularly those with a specific mission of supporting people living with long-term, health conditions, are often highly charged.
The reasons are clear. “Nothing about us, without us” is a well-established mantra within the disability rights movement. It therefore makes sense that some activists feel that organizations that purport to speak on behalf of certain sections of the disability community should also be led, at least at some level, by individuals from that community. To have it any other way is tantamount to cultural appropriation of the lived experience of disability by non-disabled individuals.
These issues were brought into sharp focus in the U.K. earlier this month after a coalition of Disabled People’s Organizations alongside Disability Rights UK accused some of the country’s major disability charities of actively harming the interests of disabled people. DPOs are often themselves charities but are different from similar non-profits as they are led by disabled people as part of their basic governance. The DPO Forum England Group spearheading the attack is comprised of the likes of Inclusion London, Disabled People Against Cuts and the British Deaf Association. It arose in the context of responding to Prime Minister Keir Starmer’s government consultation around a new Civil Society Covenant which it hopes will strengthen collaboration between the government and civil society.
In addressing the role of the large charities, the response reads:
“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 organizations, campaigns and policy work.
“This perpetuates the paternalistic and charitable marginalization of Disabled people.”
Further adding, “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.”
The coalition points to the fact that between 2022 and 2023, 1,457 government contracts amounting to over £460 million were shared out amongst just nine disability charities. Conversely, just 148 contracts were awarded to 90 DPOs, worth £12.5 million over the same period.
A complex picture
However, when looking at the U.K. non-profit sector as a whole, rather than just disability-focused charities specifically, it would appear that non-profits are amongst the top employers of disabled people in the country. According to the National Council for Voluntary Organizations, 25% of civil society workers identify as being disabled in contrast to just 17% in the wider economy. On that crucial question of disability representation at the leadership level, according to the 2023 Pay and Equality Survey published by the Association of Chief Executives of Voluntary Organisations, 25% of sector CEOs reported having a “disability, learning difference or health condition”, up from 20% in 2022 and 17% the previous year. This contrasts to the representation of people with other protected characteristics across the sector which appears to be on the decline.
Despite these positive signs, the points emphasized by the DPOS in relation to disability charities in particular surely hold water, especially when taking into account the uniqueness and `authenticity of the lived experience of disability and its associated marginalizations.
Unfortunately, now going into 2025, DPOs still find themselves rowing against the tide of history. Those major charities they so lament continue to maintain a brand and a footprint unrivaled in the space and reversing this, if indeed that would be a desirable outcome at all, can’t happen overnight. Moreover, the size of such organizations and the budgets they wield do tend to call for experienced industry leaders at the very top. Decades of employment inequality and injustice mean that such individuals don’t usually hail from the disability community. Change will inevitably be slow but it can surely be hastened by the government and wider society acknowledging the unique and powerful role DPOs should be allowed to play and to begin clearing a space for this to grow.
