Can research help to address inequalities faced by people with learning disabilities?

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…)

Why Does Inclusion Matter? Physical Activity and Disability

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 blogs 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) explores how research in the Centre for Exercise, Nutrition and Health is helping to make physical activity guidelines more inclusive. (more…)

Another Blog on the C-Word.

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:

  1. It felt like coproduction because it was hard and mostly uncensored. We had similar goals but I think the wider team sometimes felt I was a bit slavish to the research proposal and agreement with the funder. Others sometimes wanted to ‘get on with it’ or change things. I often did too but felt a bit uptight with the burden and privilege (?) of being the budget holder (see below).
  2. It worked well as coproduction because we played to our agreed strengths and interests.
  3. When we asked participants why they had decided to take part in research interviews, several said it was because of the team. Some said they would have put the paperwork in the bin straight away if it had just come from “the University”. The nature of the team reassured people about the underlying values of the research and that there was some presumption of trust and safety.

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 

Women Studies Departments in Indian Universities face threat of closure

Dr Geentanjali Ganjoli, Senior Lecturer at the Centre for Gender and Violence Research, School for Policy Studies, discusses the future of Women’s Studies in India.

There are 163 Women’s Studies Centres (WSCs), funded under the University Grants Commission (UGC) in universities and colleges across India, most of which now face the threat of being wound up after September 2017.

Concerns over the future of the Centres were originally raised in March 2017 but were temporarily allayed when the UGC issued a public notice on 29th March stating that all existing schemes would continue for the fiscal year 2017-18. However, on 16th June, the UGC published a revised notice that ongoing schemes under the Plan Head would be funded only up to September 2017.

The women’s studies centres in India are organically allied to feminist movements in India, and are historically linked to the UN international decade for women (1975-85), and the Status of Women Report led by a group of Indian feminists in 1974, which revealed the myriad social and economic hardships and inequalities suffered by Indian women. Women’s Studies was introduced into the National Policy of Education in 1986. The late 1970s and 1980s also saw the rise of women’s movements’ campaigns against forms of violence against women, including rape, sexual harassment in public spaces and the workplace, dowry, domestic violence, representation of women in the media and female infanticide, and is also linked to wider secular movements.

These concerns have always been represented in the teaching and research interests of women’s studies departments in India. For instance, the Research Centre for Women’s Studies, SNDT University, which was the first women’s studies department set up in the country in 1974, conducts action research programmes on topics as varied as assessing the extent of sexual harassment in university campuses, research on problems faced by the girl child within the family, and teaches women’s studies at Masters and research PhD levels.

In spite of the intellectual and political insights provided by women’s studies scholars in India, the discipline itself has often been treated as marginal by universities and funding bodies. One suggestion is that the challenges to patriarchy and gender roles posed by the Women’s Studies Centres threaten the inherent misogyny within the academy, and this may the reason why this discipline is under threat now. As observers of Indian society are aware, women students have always been subjected to discriminatory policies. Examples of this include: curfews for women in hostels, women students being evicted from their hostels in the summer break and dress codes imposed on female students in different universities.

Within this context, the threat to women’s studies centres indicates the further shrinkage of secular and feminist spaces within Indian academia, and is concerning particularly within the wider context of the rise of misogyny and right-wing Hindu politics in the country, and indeed internationally.

The Centre for Gender and Violence Research has always had close working and personal connections with women’s studies departments in India, and elsewhere, and this is reflected in our new journal in its scope, editorial board and papers. The first issue of the journal has an interesting paper written by academics from the Women’s Studies Centre in Tata Institute of Social Sciences which showcases the work of women’s studies departments in India in terms of its links to activism and feminist concerns with regard to policy and practice on gender based violence.

To read more articles like this, sign up for a free trial of the Journal for Gender Based Violence.

European citizens who are disabled: what about them?

Val Williams, from the Norah Fry Centre for Disability Studies comments on the implications for disabled people of Brexit 

Val Williams
Val Williams

The shock of the BREXIT decision is not just an issue for disabled people who now have to live in a smaller, diminished country. It also has implications for disabled people across Europe, and particularly perhaps those with intellectual (learning) disabilities.

But what about our partnership with disabled people across Europe?  In 1973, when we joined the EU, disabled people in this country did not commonly have a ‘voice’, nor were they taken seriously as a political force. At that time, I had just started working with young people with learning disabilities, within a largely segregated system, which had only just started to recognise their right to an education. Since then, disabled people have themselves taken a lead, and are rightly proud of their achievements within the disabled people’s movement – for instance, over institutional closure, and the ideas of the social model and inclusion. During the 1990s and 2000s I took part in various EU Social Fund projects, where our experiences as UK partners was not just to speak English, but to offer progressive and supportive ideas, while learning alongside other member states. The European Disability Forum has posted the following since the BREXIT decision, which reminds us of some fundamental values:

We strongly believe that a common EU human rights agenda is better achieved together. The tone of the UK campaign, which was characterised by a divisive public debate on migration, reminds us of what is at stake and what we need to fight for, within a strong EU: common values of non-discrimination, human rights and freedom of movement.

Will UK ideas on disability now be discredited?  What of the gains in thinking on independent living?  Institutional closure across parts of Eastern Europe?  Turning specifically to the position of people with intellectual (learning) disabilities, during the latter part of the 1990s, People First groups in the UK set out to link with their European counterparts, and to set up a ‘Europe People First’, genuinely led by people with intellectual disabilities themselves. The movement in Europe has always been within the framework of families’ organisations, but the umbrella organisation ‘Inclusion Europe’ now has a self-advocacy section. This is a European Platform of Self-Advocates, which is composed of member organisations across Europe.  Nothing is perfect, but compared with the 1990s, there has been progress towards an understanding that Europeans with intellectual disabilities have a right to live like others, to self-organise and to get support to have a voice.  And importantly, UK self-advocates have always been strong in demanding these things, and in making a common cause across Europe.

In the UK we are still aware of the many steps that need to be taken towards including people with intellectual disabilities in the wider disabled people’s movement. There is also already a European network, not just through the Disability Forum and an EU umbrella organisation for disabled people’s organisations (DPOs) across Europe.  In the light of the BREXIT decision, they have themselves reached out to disabled people in the UK, as mentioned above in their moving statement on the need to continue the struggle for human rights together across Europe.

Not least, accessible information is key to a meaningful conversation with all disabled people, including those with intellectual disabilities – see the progress made for instance by public and Government organisations in communicating with all. One out of many examples would be Public Health England’s easy English guide to avoiding Flu. UK efforts to work for equality in information, in voice and within public debates and research are now widely recognised across Europe, with a recent publication in Austria on Inclusive Research for instance, written both in English and in German.

As with all disabled people, the position of people with intellectual disabilities has moved on. In the 1990s I was able to visit both Germany and France, on some visits accompanying people with intellectual disabilities. Both countries had strong segregated (albeit meaningful) policies on employment – people lived within a ‘network’ of services, particularly in Germany, and in both countries, they were to some extent treated (and addressed) as children, unlikely to have anything useful to say or to contribute to the debates.  Compare that with the debates in those countries today. On June 26th, the Frankfurter Allgemeine newspaper in Germany led its Society section with a discussion of sexual rights of disabled people with autism. The headline is that people with intellectual disabilities would have aspired merely to be ‘satt und sauber’ (fully fed and clean) until now; the argument is that they can also aspire to enjoy life!   That would not have happened before the progress made by bringing disabled people together, through the European Union. The UK voice is important, and the connection between disabled people across Europe needs to continue, so that disability rights remains a common cause.

Val Williams is Reader in Disability Policy and Practice, Head of the Norah Fry Centre for Disability Studies, and Executive Editor of Disability and Society.

 

From the narrative of failure to the narrative of potential?


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David Berridge, Professor of Child and Family Welfare at the School for Policy Studies, considers the process of making an impact on policy and practice by discussing his research on looked after children. 

It is interesting, and advisable, at the completion of a research project to reflect on how it went.  There can be a tendency to delay this process, encouraged by feelings of relief as well as no doubt the need to catch-up with other responsibilities that are now overdue.

These thoughts were with me at the end of 2015 on the conclusion of our joint-research with the Rees Centre, University of Oxford, funded by the Nuffield Foundation, on the Educational Progress of Looked After Children in England.  We were certainly pleased to complete what for us was a major piece of work. There were many challenges in the work (to borrow a well-used euphemism), including: obtaining and analysing large government databases; negotiating access to six contrasting local authorities; contacting groups of older teenagers in care, their social workers, carers and teachers; obtaining and analysis large amounts of qualitative data; and writing-up the results.

Social researchers are familiar with these processes, with varying degrees of success. But we also give particular attention to the dissemination of research and trying to ensure that it impacts on the worlds of policy and practice.  These stages need proper planning throughout the research process, not just at the end.

We were certainly pleased with our research results, which we feel contain important, new messages.  Comparing large groups of children in care who took their GCSEs in 2013 with ‘children in need’ (receiving social work support at home) and the wider pupil population, we found that, once controlling for a wide variety of factors, those in care (particularly foster care) made greater educational progress than did children in need.  This is despite, one would assume, having less acute problems.  Generally, therefore, the care system appears to operate as an educational protective factor.

This is a new message as commentators in the past have generally focused on the often disappointing attainments of young people in care (exam/test results etc), rather than their educational progress after becoming looked after – an important distinction. Indeed, there was an overwhelming view from the young people interviewed that leaving home and entering care had benefited them educationally. Furthermore, it was mainly late adolescent entrants to care who experienced particular educational problems.  Clearly, we should not overlook that high attainment is important and our research is intended to contribute to this by a detailed examination of the nature of the problem and its causes.

Other important findings include that children’s emotional and behavioural problems often underlie educational difficulties.  Taking into account pupil variation and school effectiveness, there was little difference between Councils in the educational progress of children in care.  Responses of school and care systems were important, including the level of stability provided.  Nonetheless, this questions aspects of a ‘league table’ approach and of the OFSTED inspection framework.  Other results are available on the website, including the individual technical reports.

We were grateful that the Minister for Children and Families, Ed Timpson MP, spoke at our launch event at the Nuffield Foundation.  He concluded his speech by repeating the statement made by Robbie Gilligan earlier in the day, that we need to move ‘…from the narrative of failure to the narrative of potential’.  This is an important observation and it is interesting to reflect on what it means and its implications. The statement is ambiguous. On the one hand it could be referring to the fact that we should not label individual children in care as unintelligent or incapable, as their school performance has been hampered by their social and emotional development and poor parenting.  On the other, the ‘narrative of potential’ comment could denote the need to recognise that the care and school systems makes positive progress with these disadvantaged pupils, especially when there it a reasonable period of time for there to be an effect. The statement could have both micro and macro meanings; although for me ‘narrative’ usually has broad application.

In his autumn 2015 Conservative Party conference speech the Prime Minister referred to the poor outcomes for children in care: ‘These children are in our care; we, the state, are their parents – and what are we setting them up for…the dole, the streets, an early grave?  I tell you: this shames our country and we will put it right’.

A fortnight after the launch of our research the Prime Minister announced further proposals to take over failing local authority children’s services: reported to be as transformative a policy as the Academisation programme in the last Parliament.  It is unclear if children’s services’ failures relate specifically to child protection and child tragedies, to poor outcomes for children in care, or to both.  The Prime Minister’s conference speech located it in a section on entrenched family poverty.

Reform of children’s services, therefore, is signalled as a flagship policy for this Conservative administration.  We hope that our research findings, and other sources of evidence, are allowed to contribute to this debate: to help pinpoint the exact nature of child welfare problems, their complexity and the effectiveness of responses. It will be interesting to see if a narrative of potential or a narrative of failure will be maintained 2016.