Norah Fry Research – Page 2 – Comment and analysis

Disability needs to be central in creating a more just and equal society

Posted on March 12, 2018May 2, 2023 by policystudies

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.

More people with learning disabilities should be on TV!

Posted on October 30, 2017May 2, 2023 by policystudies

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/

The Values of Assessment: It’s easier when you work in partnership

Posted on January 25, 2017May 2, 2023 by policystudies

Professor Val Williams, from the Norah Fry Centre for Disability Studies at the School for Policy Studies discusses a recent project to understand people’s personal experiences of the social care assessment process.

Every day we hear about a different crisis in the NHS, some of which, at the least, can be attributed to problems in the funding of social care.

So, what happens to people who need to ‘apply’ for social care? It’s not like phoning up the doctor’s surgery and seeing your GP. To get into the social care system, you first need to have an assessment. And that assessment process will go on to determine how you will be funded, and what support may or may not be considered essential to enable you to live your life. Sounds simple? Not necessarily so. As the findings from our recent research ‘The Values of Assessment: Disabled adults and social care’ show.

The research team, led by Val Williams and Sue Porter at the Norah Fry Centre for Disability Studies, worked in partnership with members of a peer support network at the West of England Centre for Inclusive Living (WECIL), a local disabled people’s organisation, to understand their personal experience of assessments. These stories revealed the sometimes deeply felt emotions and negativity which can be created by an assessment. It can, for example, be very difficult to portray yourself as ‘needy’, to tell someone else about all the things you cannot do, rather than share the positive things you can do.

The 2014 Care Act was being implemented at the time this research was carried out, requiring social care practitioners to focus on disabled people’s own chosen outcomes in their lives, and to carry out assessments in a personalised way, so that disabled people achieve ‘wellbeing’. Everyone is different and real personalisation means recognising that fact.

All this sounds great, but the disabled people who worked with us knew that things can feel very different in practice.

The core part of this project, led by Jon Symonds, included interviews with 30 practitioners, and the messages which came from them were actually very similar to those from disabled people. In fact, the disabled researchers in the WECIL group helped to find meaning in the practitioner interviews, by listening to extracts and discussing them with the team. The theories of social care assessments might sound good, but they are often hard to achieve in practice.

‘Social workers have so many pressures on them that it is sometimes difficult for them to put the principles into practice’ said Symonds. ‘Resource Allocation Systems restricted the amount of funding available to meet a person’s needs and although many would advocate for disabled people with their managers, some would also negotiate with a person which demands were reasonable and more likely to be funded’.

The disabled people interviewed in this project said that what was most needed was ‘trust’. Practitioners also spoke about establishing a personal relationship, listening and taking time for trust to build. However, practitioners described meeting with some potential clients they felt could not be trusted:

‘Sometimes they need help but don’t want it, and sometimes they want help and don’t need it’. (Practitioner interviewed in the ‘Values of Assessment’ research).

So, there is still a need for social workers to exert ‘professional judgment’ to help some people decide what will best enable them to experience wellbeing. These are the more difficult things to discuss, and to reconcile with the views of disabled people themselves, who want control over their own lives. For truly independent living, people need support and may even need help in reaching a decision about that support. However, they also want to be part of the conversation, to speak up for themselves, and to be full partners in that assessment process. Achieving that joint interaction is much more than just ticking a box on an assessment form.

On January 19th 2017 we launched a set of videos, which were created by members of the team led by Jon Symonds, and feature the experiences of the WECIL group. These videos were designed to start the conversation between social work practitioners and disabled people who use social care. The most important thing to learn from the disabled people in these videos is that they could understand, empathise and work with the practitioners who were assessing them.

The videos from this project are now freely available, and the project team would like to hear back from anyone who has used or watched them – for training, for discussion, or just for fun. We would like to know how they’re being used, and how they could make a difference.

The ‘Values of Assessment’ videos are dedicated to Dr Sue Porter, who died suddenly on 11 January 2017, whose inspiration and leadership made this project possible. Her untimely death was a tragic loss to the disability movement, and to disability research.

European citizens who are disabled: what about them?

Posted on July 5, 2016May 2, 2023 by policystudies

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

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 26^th, 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.

Nothing about us without us

Posted on June 15, 2015May 2, 2023 by policystudies

Agnes Bezzina, Teaching Fellow in social work in the School for Policy Studies, discusses her research on service user involvement of people with a disability.

Parliamentary discussions last month featured an interesting debate on the setting up of a Sign Language Council to advise government on issues related to the development of Maltese sign language.

There was a level of excitement that Maltese sign language, the language of the deaf community in Malta, may receive deserved recognition.

Yet, there was also a sense of disillusion as questions arose concerning this council’s five-member composition, with a requirement for only one of these to be a deaf person.

How can this token representation be considered acceptable in Malta, one of the first countries to sign the UN Convention on the Rights of Persons with Disabilities? Should there not be a legal requirement for the council to be made up of a majority of deaf persons as experts of their language?

The Nothing About Us Without Us collective slogan advocated by people with disability worldwide and radically promoted in Malta at the turn of the millennium contributed to the interest in studying service user involvement (SUI) in social work.

Through my research, I tried to identify the major prerequisites for nurturing service user participation in social work education, policy and practice by using a mixed methods approach in my doctoral study entitled ‘Service user involvement in social work: emergent dynamics in the Maltese context’.

Initially, an online survey was undertaken with social workers in Malta, examining their attitudes towards SUI and their experiences of it. In the second phase, semi-structured interviews were conducted with social work senior managers, educators and policymakers, reviewing their understanding of SUI and its implementation at an organisational level.

Finally, semi-structured interviews were carried out with actively involved service users, exploring their conceptualisation of SUI and their involvement experience. One of the objectives of my study was to examine the nature and extent of SUI in the social sector.

The study exposed the lack of SUI in social work and services in Malta. Despite various conferences and seminars on the subject being organised by social work organisations, its implementation remains sparse.

While the majority of social workers (97.2 per cent) agreed that service user involvement is of value to the social work profession, 80.7 per cent believed that there was room for more contribution by service users in their particular agency or department.

An examination of the social and cultural factors that may impact on the development of SUI revealed three central factors: the smallness of Malta, the dominance of patronage and paternalism and the prevalence of charity and voluntarism.

An analysis of these features brought to light the importance of face-to-face personal relations within a small country. There were indications of the enduring nature of patronage systems highlighted by research in the 1960s, with evidence of patronage and paternalism also permeating service user relations. The charity model was still seen to prevail, although voluntarism was considered essentially desirable and deemed to differ from a patronising charity perspective.

This research also brought to light the difference in perspectives of service users and professionals in relation to SUI. Professionals generally adopt a consumerist perspective, one in which participation is outcome-oriented, has a functional purpose and in which there are no power considerations.

In contrast, service users advocate for a more democratic outlook to SUI, one that is motivated by principle, in which the participatory process itself is crucial and where the focus is on transforming power relations.

Interestingly, the disability sector emerged as an exemplar of SUI in the social sector. Advances in the 90s and the first decade of the new millennium saw individuals from a range of impairment groups, including physical and sensory impairments, as well as intellectual disabilities, being actively involved in various forums. This brings us back to the initial questions regarding the setting up of the Maltese Sign Language Council and the potential impact of not including – or, rather, excluding – people with disability in issues that relate to them.

My research revealed that it was generally the activism of individuals from select service user groups that generated the momentum for greater participation and influence. Participation gives rise to increased involvement and control.

Non-participation, however, results in powerlessness and an acceptance of the ‘observer’ status. This timely research challenges the authorities to reflect on the proposed minimal – arguably tokenistic – involvement of deaf persons on the Sign Language Council and to consider instead a genuine participation on this important body.

Only with such concrete measures will the Nothing About Us Without Us slogan translate into effective SUI that rebalances the power disparity between the social services bureaucracy and those whose well-being depends on it.

Agnes graduated from the University of Nottingham with a PhD in social work. Her degree was funded by the Strategic Educational Pathways Scholarship (Malta), which is part-financed by the EU Social Fund under Optional Programme II – Cohesion Policy 2007-2013, ‘Empowering people for more jobs and a better quality of life’. This was first posted on the Times of Malta.

Inaugural disability lecture at Staten Island College, New York today

Posted on May 5, 2015 by policystudies

A special lecture is taking place this today (05/05/2015), called ‘Curtains Up! Inclusive Research for Social Justice’. It is the inaugural lecture which has been funded by a TV personality in the USA, Geraldo Rivera, and is being given by Dr. Val Williams from Norah Fry Research Centre, School for Policy Studies, with Beth Richards from the Misfits Theatre Group, and Vicky Mason who is a PhD student at Norah Fry. Our link with Staten Island is through former colleague Barbra Teater, who is now living and working in New York, running the social work programme at the College of Staten Island, part of the City University of New York.

The lecture commemorates a notorious institution called Willowbrook State School, which housed literally thousands of children and young people with learning disabilities from around 1948 until its closure in 1987. Known as the last great disgrace in US disability services, Willowbrook was the subject of a TV expose by a (then young) Rivera in 1972. With his camera crew, he broke into the wards, revealing the filthy and animal-like conditions in which children were being kept. It makes for horrific viewing.

Since then, of course, much has changed. Val, Beth and Vicky will talk today about the exciting and important things achieved by people with learning disabilities, including Beth herself. The focus is on drama but also on inclusive research, and how important it is for people with learning disabilities to have their voices heard – something that is explored in the programme MSc Disability Studies: Inclusive Theory and Research hosted at the School for Policy Studies.

We hope to forge continuing links between Staten Island and the School for Policy Studies.