“Nothing about us without us” is a concept that’s been around for centuries and is used to encapsulate the concept that decisions shouldn’t be made without the direct participation of an impacted group. Its use in a disability rights context is attributed to South African disability activists and was popularised in the UK and the rest of the Western world in the 1980s and 1990s as the social model* of disability developed.
It’s been a touchstone and framing for disabled activists ever since. To me, this statement is many things all at once. It’s a political position, a goal – and a reminder of where we have come from. It’s a plea for disabled people to be recognised as experts in that which concerns us.
Recently, I came across a longer version: “Nothing about us without us and nothing without us at all.” This resonates as it represents more than just remembering to include disabled people when conversations, plans and decisions are made about us – a pretty low bar.
To me, this longer version means to include disabled people always, all of the time, with everything you do. And that means including all disabled people, not just those of us who are easy to accommodate.
Some of these ideas were discussed recently in an Arts Access Aotearoa staff workshop, led by Eryn Gribble and me. We explored connections between disability history, language and models of disability, and how this affects the way disabled people are perceived in an ableist society.
Although I was born with my disability I didn’t grow up in the disability community and I wasn’t really connected to other disabled people. I certainly didn’t see disabled people in positions of leadership, in parliament, on the stages of our theatres, or any place where disabled people had a platform and a public voice.
Consequently, I didn’t see myself or my future anywhere either. This is not an uncommon experience and it’s why representation matters. Disabled people are the largest minority in Aotearoa New Zealand, with 1.1 million or 24% of the population identifying as disabled in the 2013 Stats NZ Disability Survey. We should see ourselves reflected in society – and we should be seen and heard.
This representation, this visibility, is changing! There are movements like Disability Pride; disabled characters (and not just as villains) in theatre and television and increasingly being played by disabled people; disability arts festivals and disabled artists across the world claiming space and giving voice to concepts and narratives that hold the nuance and beauty of our lives; and the reframing of disability as aesthetic. There's also “crip time”, a concept coined by disabled professor Alison Kafer, which prioritises making “time” work for us and our “bodyminds”, rather than prioritising time and deadlines over ourselves.
Disabled people, alongside families, whānau and allies have fought for inclusion and representation for decades and we have fought to have a say in our own affairs, as individuals in our own lives and at a wider systemic level in the organisations and entities that serve and advocate for us.
A new ministry for disabled people
The announcement of a new ministry for disabled people on 29 October by Minister Sepuloni and Minister Little is an important step towards driving change for disabled people and was welcomed by many disabled people, albeit with understandable hesitancy.
There have been several fantastic opinion pieces written in response. This piece on Stuff.co.nz by Dr Huhana Hickey asks how it will work with disabled people and meet obligations under Te Tiriti o Waitangi and various UN conventions. A RNZ piece by Chris Ford speaks to the depth of need for the ministry and its work.
This new ministry presents an opportunity for government to commit to the principle of “Nothing about us without us”. It is also an opportunity for disabled people to have a say over how government and associated systems respond to our needs as we navigate our place in a country that includes us in everything, always.
I’m excited to see how this space for leadership influences the work we do, the art we make and the future we imagine for ourselves.
*The social model says that we are disabled not by our individual impairments but by a society that builds and perpetuates inaccessible spaces and systems.
Stace Robertson is the Access, Inclusion and Participation Advisor at Arts Access Aotearoa.