Nothing about us without us

By Anne Collis, PhD student at Bangor University and member of Barod, a Welsh cooperative set up and run by a mix of people with and without learning disabilities. 

The 1990s rallying cry of ‘Nothing about us without us’ was used, and is still used, to highlight that disabled people must be part of any discussion about their lives and services they use. It was born within the context of a powerful ‘them’ and an excluded ‘us’. 

In the world of social care and support, the powerful ‘them’ is often the commissioner, the service provider, sometimes even the frontline worker or family carer. The less powerful ‘us’ is often the disabled person, sometimes the family carer and – perhaps more often than is acknowledged - the frontline worker. 

There are still times that less powerful people need to shout to those in power that ‘they’ must do nothing about ‘us’ without ‘us’.  If you find yourself needing to do this, then whatever the context or activity, it should not be badged as ‘co-production’. 

Co-production makes us all ‘us’, and leaves no space for a ‘them’. It achieves this by all of us sharing power and accountability.  Our rallying cry is “Nothing about any of us, without all of us”. Becoming ‘us’ takes work, discomfort and commitment - but the rewards are immense: 

• ‘us’ is not just people who use health, care and support services
• ‘us’ is not just family and friends who take on caring roles
• ‘us’ is not just members of the public, citizens or tax payers
• ‘us’ is not just the people who commission and run services
• ‘us’ is not just the people who work in services.
  

Try this quick check. Pick a local situation. Run through these five interest groups in turn and try imagining someone from each group insisting ‘Nothing about us without us’. When that feels equally comfortable coming from the mouths of anyone – that’s when you’ve cracked co-production. That’s when you’ve become an ‘us’ without a ‘them’.