In this blog, Claire Bynner, Research Associate for What Works Scotland, reflects on the people at the event, their activism, and the politics of possibility.
What Works Scotland was pleased to be invited as a partner in hosting the 10th Alliance Conference at the Radisson Blu in Glasgow. The buzz at the event was testament to the number and range of organisations that are involved in the Alliance - including national support providers as well as small, local volunteer-led groups and individuals. The theme was Two Million Expert Voices in recognition of the two million people across Scotland who are disabled, living with long term conditions and unpaid carers. These two million people, once regarded as passive recipients of services, were recognised at this event as experts in their own lives.
The lived experience of disability was placed centre stage with the first act of the day - the Purple Poncho Players. The players are supported by
I was asked to be an ‘expert voice’ for the day, a role that involved listening and attempting to convey the thoughts, reactions of people at the conference who might not feel able to speak up. Most of the people I met were individuals, disabled people, who were not attached to any organisation. Their voices chimed with the Purple Poncho Players. They recounted the daily grind of trying to live active and independent lives while struggling with inaccessible and poor quality services. They also spoke of their willingness to take on personal challenges. One woman who suffers from acute anxiety spoke in front of a room on 50+ delegates about her experience of the Links Worker Programme.At a workshop, we saw a video in which a woman, from InS:PIRE, a programme for critical care survivors, had allowed herself to be photographed for the Scarred for Life exhibition (currently on tour in Scotland). Another woman in a wheelchair mentioned in passing that she is an active member of Walking on Air - Gliding for disabled people. These random individual examples and many others demonstrate the power of human agency - the possibility of making brave personal and political choices.
In contrast to the complaint from Tom Kibasi in the New Statesman of the 'impossibility that pervades politics’, there is a sense of political possibility and potential in Scotland. Shona Robison, Cabinet Secretary for Health and Sport, and later Jason Leith, the National Clinical Director, spoke of their ambitions for the future following the national conversation on health and social care. One aspect of the future strategy is Our Voice, a vision for engaging of users of health and social care services through citizens hubs, citizens panels, and an online ‘tripadvisor’ for healthcare. Patient Opinion is a place where stories and experiences of health care can be posted online. The ambition is to change the framing of the conversation between individuals and health care professionals from What do you have? to What matters to you?
Oliver Escobar, What Works Scotland co-director, highlighted that at this moment in Scotland there is a real opportunity to democratize health and social care through the involvement of citizens in the governance of Integrated Joint Boards. Oliver also offered a word of caution: citizens may find they have more influence as advocates than they do as partners. The choice of how to engage and have the greatest impact on policy is an important strategic decision to consider. Alongside the citizen voice, research has a key role to play. There is currently a call for applications for DRILL (Disability Research on Independent Living and Learning) a research programme led by disabled people, their organisations, academics and partners.
So, what next for the two million people that the Alliance advocates for? There were many answers at the end of the conference to this question but for my own part, I hope the next 10-15 years brings less social isolation and greater involvement, confidence and political activism - building on the legacy of the inspiring disabled people -led organisations that are active today. Just imagine if two million people in Scotland were involved in reframing the political narrative of what is and isn’t ‘possible’. People have the collective ability to shape the future. That simple fact in itself provides a strong basis for optimism and a politics of possibility.