from the School for Policy Studies
Project team: Nadine Tilbury (Policy officer for the Working Together with Parents Network (WTPN)) and Beth Tarleton (WTPN Co-ordinator and project PI)
“Substituted parenting” What does this mean in the family court?
We aim to be in a position to answer this question by the end of our 18-month project (April 2023) and are extremely grateful to the Nuffield Foundation for providing the funding and support that will enable us to do so. (more…)
Ensuring that that our research considers and promotes equality, diversity and inclusion is central to the work we do at the School for Policy Studies. Working in partnership with communities and stake holders to identify research questions that matter and ensuring that studies are co-produced wherever possible helps achieve these aims. This series of blog posts looks at some of the ways what we research and how we go about it incorporates EDI principles.
In this post, Kate Bowen-Viner (Social Policy PhD student) explains how research in the Norah Fry Centre for Disability Studies is helping to tackle inequalities faced by people with learning disabilities. (more…)
Professor David Abbott, from the Norah Fry Centre for Disability Studies, looks at collaboration and power sharing in coproduced research.
It’s #CoProWeek if you’ll excuse the twitter short-hand. And with a whiff of, ‘This is what I did in my holiday’ news, I am not long back from a summer school about co-production at the rather glorious and gloriously named, University of the Highlands and Islands.
One of the things I liked about the course was that we were comprised of researchers, activists, heads of charities, community agitators and leaders, and policy and engagement types. We shared a commitment to making things change and making things better in our respective communities. I think some of us went searching for the perfect way to do coproduction and of course in that respect we were usefully disappointed. Two main learning points for me, about which more below, were: 1. Coproduction behoves us to rethink who is ‘we’ and who is ‘them’ and ‘they’? 2. In the overall endeavour of research, who has a say, who always has a say and who rarely or never has a say?
It seems to me that lots of folks are in search of ‘true’ co-production, some holy grail of perfect collaboration and power sharing. We are awash with toolkits, guidance, good practice, courses and webinars about coproduction. It’s an industry in and of itself. I wonder if there is more of this than actual coproduction.
In my field at the intersection of social policy and disability studies, there is a long history of problematising the role and historical dominance of non-disabled people doing research on disabled people. The movement towards more inclusive research with disabled children, youth, and adults, including those with learning disabilities, is now however fairly well established.
In my first research job with a disability focus, our young disabled people’s reference group held a fairly long, no-holds barred discussion about whether or not I should be in the room as a non-disabled person. It was very uncomfortable for me but they were rightly asserting their power and asking a legitimate question. So, coproduction for me sometimes has a feeling of ‘emperor’s new clothes’ but also something co-opted for better and sometimes worse to actually mask power differentials. I can still really only whisper in lower case about being part of a so-called coproduction team evaluating a so-called coproduced government policy programme “with” (lol) disabled people. The volume on coproduction was high but the reality was draconian and grim.
What I can say, from my own experience of being part of a project team made up of user-led organisations, disabled people’s organisations and university researchers, are three things:
Money matters and I mentioned above that I had been the budget holder in our work together even though in fact the collaboration was well established and the need for research established before I was ever invited in as a researcher. (I liked this. To me it turned on its head the usual idea that coproduced research is about the researcher inviting the non-academics, the non-researchers into the tent. Plus, note the ‘non’ rather than what people actually are – experts in all kinds of domains.) But the reality is that many funders require the budget holder or principal investigator to be based in a University or the NHS or some other statutory service. This doesn’t rule out coproduced collaborations but the power is already and instantly a bit unequal.
This is why the Disability Research on Independent Living & Learning (DRILL) programme was so neat as the world’s first major research programme led by disabled people. Not to my credit, but I can recall feeling irked that such a big funding opportunity excluded me from applying missing, initially, the point that this was entirely right and massively exciting and important. My initial annoyance presumably mirrored by groups routinely excluded from or hampered by the set-up of research funding streams.
If I can end by directing you to elsewhere it’d be to this brilliant podcast which discusses what to my mind is a wonderful, authentic piece of coproduced research with young disabled women living shorter lives but exerting the value, joy and expertise that their lives engender. “Coproduction is not about having all the answers, but about learning together,” say the researchteam. Amen sisters.
David Abbott is a Professor of Social Policy in the School for Policy Studies at the University of Bristol and an Associate Director of NIHR School for Social Care Research. He tweets things about research, cake and the countryside at @davidabbottbris
Dr Sandra Dowling, a lecturer in Disability Studies at the Norah Fry Centre for Disability Studies discusses deinstitutionalisation in the context of the Transforming Care Policy programme.
People with learning disabilities are still, in some circumstances, leading institutionalised lives – the Transforming Care programme has a long way to go, and we must not forget those people with learning disabilities with the highest levels of ‘need’ who are experiencing the highest level of separation from an ordinary life. Recent decades have seen significant changes in the lives of people with learning disabilities in the UK. Once routinely institutionalised, distanced from home communities or their Right to a life like any other, people with learning disabilities were relegated to the shadows of the everyday and had limited opportunity to effect change. This article suggests these issues might still be affecting too many people with learning disabilities in 2018.
Advocacy and activism amongst people with learning disabilities and their allies has been a powerful force in altering the opportunities available to some people. To be respected, to be heard, to have choice and to really have the chance of a life like any other have been common demands. For many people these demands, these requests, have to some extent been realised. In the UK today some people with learning disabilities live in a home they have chosen, some have a job, some have regular contact with family and friends and some feel part of their community. Too many do not.
The challenge to realise the fundamental human rights of this section of the population is ongoing. The urgency of the challenge is very much determined by personal position. If you are a person with learning disabilities or indeed an ally, these challenges are of course urgent. Although recent policy does commit to a transformation in social care for people with learning disabilities, urgency to transform this to practice is not consistently apparent.
Major policy initiatives and legislation in recent years have produced a convincing rhetoric to support ideas of individual autonomy, inclusion and a role in decision making about important life matters. The Care Act 2014, for instance, details guidance for adult social care which, importantly, includes the principle of individual wellbeing. In practice wellbeing involves people having control of their day to day life, living in suitable accommodation and being able to contribute to society. It is a requirement of The Act that local authorities take people’s views, wishes and beliefs into consideration, and that their efforts support what people themselves want to achieve in their own lives.
The Transforming Care Policy Programme produced a raft of reports, guidance and policy following the shocking abuse of people with learning disabilities residing in Winterbourne View Assessment and Treatment Unit. The overall aim of Transforming Care has been about improving health and social care services to enable people to live in the community, to have good support and to be close to home. It aimed to address the high numbers of people with learning disabilities living for too long in Assessment and Treatment Units (ATU), often at a long distance from their families and without adequate discharge planning. However, since the scandal broke in 2011, and following a robust policy response, little has changed. The numbers of people in ATU settings has remained stubbornly high, provision of sufficient support in the community has not met need and discharge remains an elongated process for many.
Narratives of Home, a study funded by the NIHR School for Social Care Research, conducted within the Norah Fry Centre for Disability Studies (NFCDS), has interviewed 18 people with learning disabilities and three parents of people discharged from Assessment and Treatment Units (ATU) during the lifetime of Transforming Care. This narrative study has collected people’s stories of resettlement in the community following their hospital stay. Of those interviewed, 12 were male and 6 were female. Time spent in ATU settings ranged from 4 – 20 years. The legacy of institutional living clearly impacted on their resettlement experiences.
The factors which are identified as important to individuals are just what you would expect. Security, choice, a valued social role, friendships, fun and the opportunity to take pleasure in things which are important to you. But what is different is that the people that we interviewed, even though living in the community, still often live within parameters defined by others. Some described their attempts to ‘get out’ of the ATU by ‘doing what the doctors said’ or ‘just do what you are told, keep your head down, get through all the programmes and hope for the best’. These experiences travelled beyond the walls of the ATU into their now ’independent’ lives in the community. In interview people checked with present support workers whether they were saying the ‘right thing’, or whether it was ‘ok to say this’. Some were so heavily medicated that they could not remain awake throughout the interview.
Choice and autonomy was found in things such as choosing how to decorate your home, or what to have for a meal. A deeper sense of independence of thought and action though, remained elusive for some. Institutionalisation, just as a hundred, or fifty or twenty years ago produces the same results. It dis-empowers individuals, depleting independence of thought and sense of self. A good life happens at a deeper level than what can be seen on the surface of community living. The need to address issues of identity and equality remain pertinent. Deinstitutionalisation remains a goal.
Professor Val Williams, from the Norah Fry Centre for Disability Studies, discusses tackling disabled practices and how we all have a part to play in getting things changed.
When times get tough, disabled people always seem to go to the bottom of the pile. It’s as if the problem of ‘disability’ is always one step too far, or something which cannot be contemplated until everything else is sorted out. For instance, the debates about BREXIT have centred on trade agreements and free movement of citizens. How often do we talk about the rights of disabled people, and how they may be protected under existing EU legislation?
The UK itself has laws to protect disabled people’s rights, with the 2010 Equality Act. But constant vigilance is needed to remind public services that they have a duty to provide reasonable adjustments for disabled people. UK financial cuts are impacting most heavily on disabled people, and a recent report by the charity SCOPE highlights that, on average, for every £100 earned by a disabled person, only £67 is left after disability-related costs.
Disabled people certainly incur additional costs by virtue of their additional needs, but is disability too much of a ‘cost’ for society? We would argue that the reverse is true: economic, political or social crises create moments when disabled people must be at the forefront. This is what we have been documenting in our project ‘Getting Things Changed’ (Tackling Disabling Practices: Co-production and Change).
Disabled people have always faced problems which are created because society is structured without disability in mind. For instance, the rail transport system assumes that all passengers can step over a gap between a train and the platform, that they can walk to their seat, and indeed that sitting in a ‘standardised’ seat is an option. At a more subtle level, we have also found countless practices in our study which exclude or marginalise disabled people. The way things routinely get done in everyday life can be problematic, and that can include the material infrastructure of a building as well as the ways in which people interact. For instance, people with dementia might rely on familiar, clear signage to find their way in and out of a building, or the facilities in it, but they also need people who will give them time to communicate, or understand how to wait for a response in a respectful way. In parts of our project, we are looking at the barriers disabled patients face in English hospitals. With regular news items about the crisis in the hospital system, we know that change must happen.
We argue that this is the time to include disabled people, not just as recipients of care, but as change makers. Our project is co-produced with Disability Rights UK and with other groups of disabled people who are actively involved in the research. Given that disability is part of humanity, we should all be working WITH people with disabilities, to create a more just society where all are included.
Understanding a disabling society
So how can we start to understand why things get stuck? Since the 1980s and the introduction of the social model of disability, Disability Studies theory has focused considerable attention on the dichotomy between the social and medical model of disability. There have been continual debates since that time, with UK theorists arguing since the 1980s for a new understanding of disability and impairment. Oliver (2013) sums up neatly what the real issues are now:
“While all this chatter did not matter too much when the economy was booming, now it no longer booms it is proving disastrous for many disabled people whose benefits and services are being severely cut back or removed altogether”
Have disabled people’s lives become more restricted since the 1980s, or have the concerns of disabled people themselves been overtaken by theoretical debate? And how can we as activists and academics change that tide? In our recent article from ‘Getting Things Changed’ we argue that we need as a society to go further than debates about ‘what is disability’. The social model directed our attention towards the external barriers facing disabled people, and now we need to find better ways of analysing and understanding those barriers. Many people use the word ‘culture’ here, to bemoan the difficulties caused by unhelpful attitudes and approaches which can be evident in congregate services such as care homes or hospital. In our study, we have turned towards the ideas of social practice theorists such as Elizabeth Shove, which have helped us to understand how things get done, how practices get shaped – and therefore how we can get a handle on change.
An example from our wide-ranging project comes from the insights of people with dementia. Since 2009, we have had an English Government policy called ‘Living Well with Dementia’ . What matters for people with dementia is the quality of life they are leading right now, and our work with the ‘Forget-me-Not’ group from Swindon has helped us to unpick what this might mean.
Here are some words from the researchers with dementia from the Forget-me-Not group:
“Everyone will tell you the same thing. You’re diagnosed, and then it’s ‘You’ve got dementia. Go home and we’ll see you next month’. What we need is for someone, like a counsellor or someone else with dementia, to tell us at that point ‘Life isn’t over’. You can go on for ten or fifteen years. And you’re not told, you’re just left. And I thought, tomorrow my day had come. The fear and the anxiety sets in, and then the depression sets in, doesn’t it? I think when you’re diagnosed, you should be given a book. And on the front of the book, in big letters, it should say: ‘Don’t panic’.”
In terms of social practice theory, these are people who do not want to be seen through a medical lens as individual tragedies, but are turning around the whole meaning of dementia into something where they are in control, can support each other and where they have a voice. However, social practice theory also reminds us about the importance of material resources. For instance, in order to meet each other and to have a collective sense of peer support, people need to have spaces which are not institutionalised, which they feel they can ‘own’. All too often, we have seen very well-intentioned group activities taking place in old, large halls, or where people are routinely sitting in configurations which make communication difficult. But we have also seen the Forget-me-Not group, in an ordinary, homely environment, where staff members interact on a basis of equality with the members who have dementia.
This is just one of many examples where we are finding that people CAN do things differently, and where the ‘culture’ can change towards inclusion and empowerment. We hope our research will provide the impetus to take some of this further.
Change will never be completed – but we will be presenting the latest research from our project and discussing some of these ideas at our launch event on 25 May. Book your place now to find out more about the many strands of the project how we can all be change-makers.
This post was written by Prof Val Williams with assistance from Prof Pauline Heslop, Beth Tarleton, Wendy Merchant, Bernd Sass and Joe Webb at the Norah Fry Centre for Centre for Disability Studies.
My name is Beth Richards, I have a learning disability and I am an actress. I want to educate the world about people with learning disabilities through my acting, and think that mainstream TV in the UK should be doing more to represent people like me.
I am doing some research to find out why so few people with learning disabilities are on TV and what can be done to change this. At the moment data suggests that only 1.2% of people on TV have a disability (Mental Health Foundation, 2014) and we still don’t know how many of these have a learning disability.
My research is part of a much bigger ESRC funded project called “Getting Things Changed” at the Norah Fry Centre for Disability Studies, University of Bristol. This project is looking at how the barriers people with disabilities in the UK face can be overcome by changing the way people do things.
Very little research has been done to explore why so few people with learning disabilities are on mainstream TV, or in the media in general, but organisations like Mencap and The Mental Health Foundation have campaigned for things to improve. Some actors with learning disabilities have also spoken out about the issue. For example, Sarah Gordy, an actress with Down’s syndrome who has been on shows like Downton Abbey on ITV and The Silkworm on BBC 1, said:
“It’s important that people with a learning disability are seen on our screens and on stage – simply because we exist.”
(The Huffington Post, 2017).
These campaigns are starting to make a difference as both the BBC and Channel 4 have made commitments to improve the representation of disabled people on their channels. For example, the BBC has committed to quadrupling the number of disabled people in its shows by the end of this year, whilst Channel 4 launched its 360 Diversity Charter in 2015 and made 2016 it’s Year of Disability. I think these commitments are great, but it is hard to find out what impact they have had as the channels aren’t reporting their success widely. From a viewer’s perspective, it doesn’t seem like there are more disabled people, especially people with learning disabilities on TV, than there were a few years ago.
One reason why the numbers of disabled people on TV might not have increased despite the BBC and Channel 4’s commitments, might be down to the way TV is made. Shows are written, commissioned, casted and produced by different groups of people. This means there are lots of different layers where disability can be excluded or discriminated against. Many of them out of the control of the television channels themselves.
This seems to suggest that the way TV is ‘done’ affects the number of people with learning disabilities who end up on our screens. I hope to explore this issue in my research by talking to writers, commissioners, casting agents, producers and actors both with and without learning disabilities about the industry. I am going to look at what these people say using Social Practice Theory to help understand how the way TV is ‘done’ can be changed to help get more people with learning disabilities on TV.
I know people with learning disabilities can be actors and have lots of talents. We are role models for others because we know what it’s like to grow up with a learning disability.
Hopefully my research can help change the media for the better.
If you want to be involved or have anything else you could help me with my research, please contact me at beth.richards@bristol.ac.uk or my PA Victoria Mason-Angelow victoria.mason@bristol.ac.uk. You can also find out more about my research and the wider ‘Getting Things Changed’ project on our website http://www.bristol.ac.uk/sps/gettingthingschanged/