22 June 2020
By Patrick Wood, SCIE Co-production, Equalities and Human Rights Steering Group Member
It’s never been more important for people to come together and do what they can to respond to the challenges presented by a worldwide catastrophe that can appear to be insurmountable, and it’s never been more difficult to do this.
One of the problems associated with an emergency response is that issues that are deemed to be peripheral fall by the wayside. Most people don’t get to decide what’s essential or important. Most people remain subject to the conclusions reached by decision makers, whose motivations might be informed by considerations that act against the interests of communities, and which result in further damage being done to groups which are already hard done by.
The arbitrary diktats of decision makers are not necessarily malevolent and uncaring, but their consequences can be felt as if they were. The manifold achievements of movements for social change have made the world a better place for many of us, but they are yet to radically alter the status quo, which remains intact to further the cause of vested interests. We might be all in it together, but some of us are in it more deeply than others.
One of the consequences of the response from health and social care organisations to the emergence of COVID-19 has been to side-line ideas like co-production, to treat them as luxuries that can be explored at leisure once more important and pressing demands have been dealt with. This approach represents a form of paternalism that is diametrically opposed to the values that underpin co-production.
I do not doubt that including people with lived experience of a range of disabilities would have resulted in a better response to the suffering caused by the pandemic. Fewer people would have died and more people would have flourished.
The task facing co-production activists who are grounded in their commitment to fighting for the rights of disabled people is to find new ways of working together with the aim of making the idea of ‘Nothing about us without us’ a living reality.
And the duty of decision makers is to act on what we say.