The problems faced by people who use social care services are generally talked about in the light of the UK government’s austerity policies, and consequent cuts to local authority core grants (https://www.ifs.org.uk/publications/12857). At the same time, there are constant media reports of problems in the NHS, resulting in calls to create a ‘new model of care’ https://www.theguardian.com/healthcare-network/2018/jan/04/nhs-under-threat-new-model-of-care where social and health care become united. However, even if NHS money were shifted to social care, this would still not create a system where all the needs could be met, since it is argued that there is a finite pot of money available.
In these circumstances, it might seem like a far call to associate health and social care questions with the arts, which could seem both superficial and trivial by comparison. Yet in our current research, ‘Getting Things Changed’, http://www.bristol.ac.uk/sps/gettingthingschanged/
we are looking at the barriers faced by disabled people in a wide range of life domains, including performance arts, TV, as well as in obtaining ‘reasonable adjustments’ in hospitals. What then is the connection, and why do we think we can all learn together about disabling social practices, and change?
One of the key messages from our project is that social practices get stuck, in what we may call ‘institutionalised’ frames. That means that things are done in bureaucratic, ‘top-down’ ways, with professionals and experts deciding on what is best. For instance, a meeting with social care professionals is led by social services, not by the client; commissioning of local services takes place via local authority commissioning bodies and processes, not by service users themselves. An institutionalised encounter is one where there is a power imbalance, where experts know best, and in which a disabled person has to fit the role of patient, client or service user.
Sometimes of course one might argue that the experts do know best. Patients who are going into hospital want to be seen by a qualified medical professional, who can diagnose and treat their condition, and disabled people who were interviewed for our project were no different in that respect. The difference is that they were not always able to access hospital services easily, for example, because their information or communication needs were not always met, or that the physical needs of wheelchair users were difficult for hospitals to accommodate. Some of these issues are outlined in the latest paper from our project, written by Dr. Stuart Read (http://www.bristol.ac.uk/sps/people/stuart-a-read/pub/150400813).
The practices that take place in hospitals may have been formulated explicitly to ensure that they deliver good health care, but they nevertheless get shaped according to the way resources are allocated (including the beds themselves!), the competences of staff and patients, and the values associated with providing free health care to all. These three elements of social practices (material resources, competences and values) were outlined by Elizabeth Shove and her colleagues (http://wp.lancs.ac.uk/elizabeth-shove/) and have been a key way for us to understand and unpick the way things get done.
Theories of social practice have been at the heart of our project https://www.tandfonline.com/doi/full/10.1080/09687599.2017.1401527
because we feel that they have a lot to offer to disability studies, helping us to appreciate the ways in which disabled people are forced to ‘misfit’ into the naturalised ways things get done. But every time something gets done, in a hospital or in other parts of our lives, it could be done differently. We can re-imagine for instance how social care might work, just as surely as we can re-imagine how we go out to a restaurant, order in food or meet up with our friends.
The concept of a ‘social practice’ is something that cuts across all aspects of our lives – a social practice is simply something that human beings do, and it can become patterned and shaped in certain ways. Strangely enough, the concept of ‘institutionalised’ ways of doing things has also been bemoaned by media professionals who are trying to include more disabled people in the TV industry (http://cinemajam.com/mag/features/diversity-in-film). The ‘disabling the screen’ group which met in January included Beth Richards, an actress with learning disabilities who is carrying out research in our project about people with learning disabilities on TV.
So if things can get stuck, we can also unstick them. That is what we learn from the arts, since maybe here more than elsewhere, people are prepared to try things in a new way and find something different. For instance, music-making has been transformed with disabled people in mind who might not be able to access traditional instruments. The pioneering work done by Open Orchestras also has a place in our research https://www.openorchestras.org/ with Dr Marina Gall, a music educator, recording Open Orchestras sessions in special schools to see how they enable pupils with profound and complex needs to become music makers.
On May 25th we are planning to showcase some of the work we’ve been doing in our research project at the SS Great Britain in Bristol, and to make links across the research to help people think afresh about how practices can be reshaped. Creativity and boldness may be needed to help us solve problems in lots of areas of life, including in health and social care, and those changes can be led by disabled people themselves.