Social services are agents of change for disabled adults
Val Williams and Joe Webb
'Getting Things Changed', the title of our recent research, might sound ambitious. Yet social care practitioners are tasked with facilitating change every time they engage with disabled clients. This article considers just two aspects of our wide-ranging research programme which recruited 448 participants over eight different projects, spanning different impairment groups and very diverse life contexts.
We will discuss first the role for social care in creating practices which are truly ‘inclusive’. In the second part of this article, we focus on what we have learnt from people with dementia, about the ways in which language and interaction matter to them, and what social care could do to create more inclusive encounters with people with dementia.
Disabled people are often made to feel as though they do not fit. That theme arose in our research on reasonable adjustments in hospitals, where one respondent spoke about the difficulties of accessing the hospital car park, as she could not reach the barrier from her car. Instead of making the car park more accessible for everyone, she was told she had to phone up for assistance when she arrived. What then would true inclusion mean, and how can social care practitioners help achieve that?
The Care Act 2014 focuses social care assessments on client-led outcomes: disabled adults should be determining for themselves what they want to achieve, sometimes with support from others around them. Across our research, we had people who needed social care to do the things that anybody might want to do – to have a family and care for a baby, to choose and assemble furniture bought online, to simply go for a walk in the park. If social care is to be truly based on the Social Model of Disability, then social workers need to be doing more than making some adjustments to fit that disabled person to an existing practice. A social worker whose sights are on social justice can make a difference to these practices, as well as providing support to the disabled person, and so too can those at the ‘frontline’ – support workers, carers and personal assistants.
In our research, we tried to understand how practices could be changed fundamentally by thinking about the different elements that go together to shape the way things get done. For instance, a practice can sometimes be changed by the provision of technology or material resources, such as online shopping or even ‘slow shopping’ as has been introduced by some supermarket chains. Practices also involve human beings with their own skills and competences, but in our research we found that training for new skills was most effective when it was led by and included disabled people themselves. In this way, power imbalances which create problems for disabled people can be tackled very directly – as people with dementia have shown us through their involvement in training videos. Finally, we saw how successful support for parents with learning difficulties was achieved not just through ‘training’ or disseminating good practice, but by a shift in the value and trust afforded to disabled parents. Material resources, competences and values were at the heart of all the practices we looked at, and more examples can be seen in our Social Practices booklet.
If social care should go beyond the ‘individual’ that is not just about assigning individuals to group activities. It is about re-shaping the way things get done, so that disabled people have an equal role and can access an inclusive environment. Nowhere is that more true than for people with dementia. In our research, we filmed encounters between people with dementia and supporters, carers and staff. Interaction skills are central to every encounter between a social care practitioner and a disabled person, and as we found, are also one of the main keys to more inclusive practices. We worked with a small group of people with dementia who formed their own research group, as part of the Forget Me Not organisation in Swindon. They said:
‘I don't know where it came from, for all this panic to set in, and I think that because I've got dementia, all of a sudden I feel I don't have rights. And people who are caring for me, have taken all those rights away from me, and they're doing it for me, and I don't have a say in it. But we’ve learnt that we have to fight for our rights.’
People with dementia do now have a say, through the growing movement for Dementia Empowerment and in our research they are creating a set of training videos about how to improve conversations, the first of which is called ‘Talking About the Past’. Their messages to social care are that they too want personalised support, which is under their own control; but they also want to be included in social, domestic, leisure and work life – just as everyone does. Instead of assuming that a person with dementia only needs to access an activity group, maybe more creative social work could ensure that community walking groups, music societies, banks, shops and indeed work places are enabled to listen to what people with dementia are saying. Creating a more dementia friendly society simply means a better, more inclusive, environment for everyone.
About the authors
Val Williams is a Emeritus Professor at the University of Bristol. The Getting Things Changed research project is based at Norah Fry Centre for Disability Studies at the University of Bristol, is led by Val. During her time here, she has developed and pioneered methods for including people with learning disabilities as researchers.
Joseph Webb is a researcher at the Norah Fry Centre for Disability Research and worked on the Getting Things Changed project. His research interests focus on interaction, disability studies, co-produced research and how to make changes to policy and practice.