Written by Val Williams and Caroline Miles, Norah Fry Centre for Disability Studies, University of Bristol
When we talk about disability issues, the word ‘practice’ is often mentioned. Commonly, that refers to practitioners – those who are paid to provide services which disabled people use, particularly social care. Of course it can also refer to universal services, such as health care or education. But our discourses generally seem to contain the common sense ‘assumption’ that disabled people are always in some sense service users, that they are the passive recipients of and participants in the playing out of others’ practices’ towards and around them. This has led me to think about how we frame the problems facing disabled people, and this blog post is an exploration of some of these ideas. Could we turn our attention outwards towards the practices we all take part in, not just ‘service land’, but real life?
Much of our recent concern in the disability world has been around the potential and actual abuses of services – i.e. the practices that provide care and support to those who need it. For instance, in June this year, thirteen members of staff ‘at a Devon care home for people with learning disabilities were convicted on charges of false imprisonment in relation to their ‘everyday practice’ – the way the provided ‘routine’ care. Forms of punishment and seclusion became over-used, and “It became a way of life – it became the norm, a habit. Rather than care in the community it became lack of care in the community and systematic neglect’. Suddenly, when we see how these practices are working out, they can flip over and it becomes obvious that they are no longer helpful or supportive, but neglectful, if not downright abusive to residents.
Findings of research projects, e.g. our own research about assessment practices, as well as numerous high profile abuse cases e.g. Winterbourne View and disabled people’s own accounts of their care experiences all demonstrate that social work practices , social care and other forms of support for disabled people need to be improved, and thus we try to work out which specific practices are causing problems or barriers, and how we can improve those practices.
An international conference was held recently in Bristol about communication in health care encounters at which keynote speakers very convincingly and interestingly analysed how physiotherapists orient to a patient’s sense of ‘agency’, and how dementia diagnoses are conducted by a GP. Indeed, our own papers presented at this conference by members of our ‘Getting Things Changed’ project team were focused on the micro practices, the fine-tuning of conversation, which can misfire when trying to engage a person with dementia in talking about the past. All of this, I would argue, is practitioner-focused research – in the sense that it is the practices carried out by the non-disabled care or support staff, the physiotherapist or the doctor, which are in the spotlight. However, in our project, we are very clear that we are seeking collaboration from disabled people themselves, so that they can be equal participants and guides to what constitutes ‘good practice’.
Will a focus on changing/ improving professional practice actually provide a total solution? For instance, will inclusion in a dementia group create a better life for a person with dementia, or will their sense of control in engaging with physiotherapy outweigh the pain and indignity of their treatment? The answer to all of these might of course be yes: services and supports are often essential, and so it is important that we examine them and try to get them right. But will they in themselves create ‘better lives’ for disabled people?
For most of us, our goals in everyday life are not so complicated. Our wellbeing and happiness depend to varying extents on having some kind of personally chosen and important interest in our lives, activities, relationships, on fulfilment and a degree of control: if you don’t have something to look forward to, however trivial, then things can go pear-shaped. But these ‘trivial’ things may be very unattainable for some members of our community, including some disabled people. In our project about ‘Getting Things Changed’ we are trying to think about how it is that disabled people come to be excluded .
We have discussed for instance Rosemarie Garland-Thomson’s 2011 paper about ‘misfitting’, which seemed to us a very apt way of summarising how disabled people face exclusions, because the way things are shaped and done were not designed with them in mind. In its essence, this idea is totally aligned with an understanding of social barriers, albeit quite human and practice-oriented ones. So at a very obvious level, when someone wants to go to the toilet, but cannot get their wheelchair through the toilet door, then they are facing a world designed physically without ever thinking of their particular needs. They literally ‘misfit’ into a space which was created for non-disabled, non-wheelchair using people. At a more subtle level, they may misfit into the way things are done, and some of the social practice assumptions lying underneath which, perhaps unconsciously, dictate practice. For instance a simple day-trip with a girlfriend undertaken by someone with a learning disability can become difficult due to as assumption that they would face a risk in going by bus to a destination they do not know, and that a support worker would need to accompany them. Is that assumption justified? Would there be a different way of arranging the daytrip or do we assume that this is the only appropriate ‘practice’ in the circumstances. This type of misfitting was explored recently in a brilliant metaphorical puppet show called ‘Meet Fred’ put on by a Cardiff based arts company Hijinx. Fred, the puppet, is told that he has to go and get a job, but the job centre can only offer him a range of jobs unsuitable for a puppet – including that of swimming instructor (he is a cloth puppet!). The assumption that anyone can do a basic job, is simply not fitted to his particular situation, and so he has to suffer the consequences of a reduction of his ‘puppet living allowance’.
We have shifted here to use the words ‘practice’ and ‘practitioner’ in a wider sense, more like the sense in which they are used in social practice theory. So there are practices which we all engage in, which we often simply do not realise are ‘exclusionary’: they become the normative way of ‘doing things around here’, even though they can and are adjusted and may be acted out differently each time we do them. However, those adjustments often do not happen, and so there are people who get excluded – the ‘misfit’ goes unnoticed, or the problem is thought of as being their own impairment. In ‘Getting Things Changed’ we are trying to understand the practices that might need to be shifted, how they can be shifted, and by whom. We are using some of the ideas generated by social practice theorists like Elizabeth Shove, to analyse the way material resources, as well as people’s competences and the wider meanings associated with a practice all come together to constitute how stuff happens. To take steps towards a world where disabled people no longer ‘misfit’ we need to think more widely than services and supports, because the argument then always becomes about improving the way individual practitioners do things. Improving the ‘disability service’ sector might be necessary, but it can never be the whole picture, since the disabled person will still be seen as needy, different and problematic, requiring maybe expensive or inconvenient services to function in society. The problem is that they are still seen as a passive object of someone else’s practices. Changing practice is as much about changing the power dynamics as it is about changing the actions themselves
I will finish with a complex and potentially problematic example: one of our strands of research is about the university itself. When disabled students come to university, they may focus initially on the quality, efficiency and usefulness of the support system, and how it plays out to enable them to manage what is essentially a stressful university life. Recently, for instance, mental health issues have been high on the agenda in universities, and are being discussed in sessions to ensure staff give better support to all students in order to contribute to improved ‘student wellbeing’. The starting point here seems to be that we need to understand universities as inherently stressful, pressurised and potentially traumatic places, and then create better support services which single out disabled students as needy – effectively creating more resilient students. There is no doubt that in the short term, support services will always be necessary.
From the point of view of our project however, we would like to be in a position to change the overall practice of what it means to study in a university. To create a truly inclusive university, we need to go further than provide support services. We need to think about how practices could be shifted towards a university which is simply not so competitive, pressurised and difficult. That needs more visionary thought. In the end it will still be a practice-based approach, but one which goes further than shifting specialist practices or even making ‘reasonable adjustments’.
Disabled people are active agents, contributors and participants in society. They themselves are ‘practitioners’ in this wider sense, and should have equal access to all the ordinary experiences of life which others do, not least because they can improve and make valuable contributions to society. Together, we need to think about and alter the ways those experiences are routinely and normatively created, take the focus off solely ‘professional’ practice and intervention to ‘improve the lives of disabled people’ and give disabled people themselves agency in the development and playing out of ‘practice’.