Stronger Foundations Blog - Nothing About Us Without Us

Nothing About Us Without Us – a rallying call for the Disabled people’s rights movement but also an essential motto for any organisation interested in social change

This blog was written in response to Diversity, Equity and Inclusion: The Pillars of Stronger Foundation Practice, a report from ACF's Stronger Foundations initiative which identifies and helps foundations pursue excellent practice. This contribution comes from Tracey Lazard, CEO, Inclusion London.

I’m a firm believer in the processes and systems that help organisations understand and improve their performance in relation to diversity, equality and inclusion. The examples of equality impact assessments and reviews, data collection and reporting detailed in ACF’s “Diversity, Equity and Inclusion: The Pillars of Stronger Foundation practice” guidance are some of the vital tools organisations need to help them understand where they are and what they need to do. But like any toolbox (or piece of gym equipment) they can gather dust, neglected or under-used if your heart’s not in it.

“Nothing About Us Without Us” neatly encapsulates the central issue any organisation must face head on. Can you really understand the issues at play for ‘us’ let alone come up with effective solutions if you don’t have, up close and personal, the understanding and the lived experience of ‘us’ within your organisation?

The answer while an obvious ‘of course not’ continues to be profoundly challenging to organisations. Why? Because we are talking about the redistribution of power, the giving up of power and the giving up of a paternalistic culture of ‘we know best’ thinking.

But in my view there is simply no alternative if you are serious about meaningful and sustained social change. Though challenging, disruptive and maybe even a little scary, committing to the principle and practice of Nothing About Us Without Us is transformative.

The experience of the Disabled people’s rights movement is a great example of what happens when funders grasp what this means and apply it to their own practice. For our movement the rallying call of Nothing About Us Without Us was a response to decades of Disabled people being put in a box marked ‘passive recipients of charitable acts’ - denied control, choice or even a say in our lives. A whole industry of disability charities, neither run or controlled by Disabled people, yet securing shed loads of funding from Trusts and Foundations, continued to voice views and deliver services that not only failed to bring about social change but actively perpetuated the prejudice, exclusion and discrimination Disabled people experience.

Luckily, our movement and our call for inclusion and self-determination was heard by some key innovative funders in the 1990s. Rather than continuing funding generalised disability charity work, they choose to specifically fund Disabled people’s organisations (DPOs) – run and controlled by Disabled people. The result helped change society. Disabled people’s self organisation, through DPOs, has brought about a cultural shift in understanding of disability: disability is now no longer primarily viewed as medical or social services issue but as a human rights, equality and inclusion issue. The timeline of advances in Disabled people’s rights and inclusion is the timeline of DPOs, of our own self organisation.

This is true of all civil rights movements. Social justice is never a gift bestowed, but a matter of real rights secured through the self organisation of oppressed and excluded communities.

For Foundations and other funders understanding this essential lesson from history means, in my book, quite simply prioritising the funding and support of user-led organisations run and controlled by the communities they represent and serve.

For Foundations themselves it means actively reaching out and taking the time and effort to build real and meaningful relationships with the communities you want to support, with the explicit aim of opening your organisation up and actively sharing power. It will be a challenging, and at times, a difficult journey but it will also be a transformative and exhilarating one – getting up close, at last, to the passion and expertise of lived experience.   

Tracey Lazard
Inclusion London

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