Discussions on Disability Representation in Non-Profit Organizations

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.

Accusations Against Disability Charities

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.

Coalition’s Response

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.”

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.

Conclusion

Despite the 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.

Frequently Asked Questions

Q: What is the main issue with disability representation in non-profit organizations?

A: The main issue is that non-profit organizations that claim to represent the interests of disabled people are often led by non-disabled individuals, which can lead to cultural appropriation and marginalization of the disability community.

Q: What is the difference between DPOs and disability charities?

A: DPOs are charities that are led by disabled people as part of their basic governance, whereas disability charities are often led by non-disabled individuals.

Q: What is the coalition’s response to the situation?

A: The coalition, comprised of Disabled People’s Organizations and Disability Rights UK, has accused major disability charities of actively harming the interests of disabled people and perpetuating paternalistic and charitable marginalization.