Why would health and social care practitioners care about music making and the arts?

The problems faced by people who use social care services are generally talked about in the light of the UK government’s austerity policies, and consequent cuts to local authority core grants (https://www.ifs.org.uk/publications/12857).  At the same time, there are constant media reports of problems in the NHS, resulting in calls to create a ‘new model of care’ https://www.theguardian.com/healthcare-network/2018/jan/04/nhs-under-threat-new-model-of-care where social and health care become united. However, even if NHS money were shifted to social care, this would still not create a system where all the needs could be met, since it is argued that there is a finite pot of money available.

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In these circumstances, it might seem like a far call to associate health and social care questions with the arts, which could seem both superficial and trivial by comparison. Yet in our current research, ‘Getting Things Changed’, http://www.bristol.ac.uk/sps/gettingthingschanged/

we are looking at the barriers faced by disabled people in a wide range of life domains, including performance arts, TV, as well as in obtaining ‘reasonable adjustments’ in hospitals. What then is the connection, and why do we think we can all learn together about disabling social practices, and change?

One of the key messages from our project is that social practices get stuck, in what we may call ‘institutionalised’ frames. That means that things are done in bureaucratic, ‘top-down’ ways, with professionals and experts deciding on what is best. For instance, a meeting with social care professionals is led by social services, not by the client; commissioning of local services takes place via local authority commissioning bodies and processes, not by service users themselves. An institutionalised encounter is one where there is a power imbalance, where experts know best, and in which a disabled person has to fit the role of patient, client or service user.

Sometimes of course one might argue that the experts do know best. Patients who are going into hospital want to be seen by a qualified medical professional, who can diagnose and treat their condition, and disabled people who were interviewed for our project were no different in that respect. The difference is that they were not always able to access hospital services easily, for example, because their information or communication needs were not always met, or that the physical needs of wheelchair users were difficult for hospitals to accommodate. Some of these issues are outlined in the latest paper from our project, written by Dr. Stuart Read (http://www.bristol.ac.uk/sps/people/stuart-a-read/pub/150400813).

The practices that take place in hospitals may have been formulated explicitly to ensure that they deliver good health care, but they nevertheless get shaped according to the way resources are allocated (including the beds themselves!), the competences of staff and patients, and the values associated with providing free health care to all.  These three elements of social practices (material resources, competences and values) were outlined by Elizabeth Shove and her colleagues (http://wp.lancs.ac.uk/elizabeth-shove/) and have been a key way for us to understand and unpick the way things get done.

Theories of social practice have been at the heart of our project https://www.tandfonline.com/doi/full/10.1080/09687599.2017.1401527

because we feel that they have a lot to offer to disability studies, helping us to appreciate the ways in which disabled people are forced to ‘misfit’ into the naturalised ways things get done. But every time something gets done, in a hospital or in other parts of our lives, it could be done differently.  We can re-imagine for instance how social care might work, just as surely as we can re-imagine how we go out to a restaurant, order in food or meet up with our friends.

The concept of a ‘social practice’ is something that cuts across all aspects of our lives – a social practice is simply something that human beings do, and it can become patterned and shaped in certain ways. Strangely enough, the concept of ‘institutionalised’ ways of doing things has also been bemoaned by media professionals who are trying to include more disabled people in the TV industry (http://cinemajam.com/mag/features/diversity-in-film). The ‘disabling the screen’ group which met in January included Beth Richards, an actress with learning disabilities who is carrying out research in our project about people with learning disabilities on TV.

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So if things can get stuck, we can also unstick them. That is what we learn from the arts, since maybe here more than elsewhere, people are prepared to try things in a new way and find something different. For instance, music-making has been transformed with disabled people in mind who might not be able to access traditional instruments. The pioneering work done by Open Orchestras also has a place in our research https://www.openorchestras.org/ with Dr Marina Gall, a music educator, recording Open Orchestras sessions in special schools to see how they enable pupils with profound and complex needs to become music makers.

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On May 25th  we are planning to showcase some of the work we’ve been doing in our research project at the SS Great Britain in Bristol, and to make links across the research to help people think afresh about how practices can be reshaped. Creativity and boldness may be needed to help us solve problems in lots of areas of life, including in health and social care, and those changes can be led by disabled people themselves.

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

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.

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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.

Why do we always think about service provision when we talk about disabled people’s lives?

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’.

Peer Modelling, written by Bernd Sass from Disability Rights UK

‘Peer modelling’ comes out of creating environments that are conducive to people taking self-initiative and supporting each other. This can be by modelling and picking up such thoughts, ideas and behaviours which are successful in managing crises and everyday life with a long-term condition.  

In whatever context – employment or health for example – ‘resilience’, choice & control and working together with disabled people are the bedrocks of any ‘theory of change’. For instance, investing in information and choice & control (as part of any care and support model or policy) could be seen as at least as important as housing – choice & control are the basics for any improvement. Peer modelling is a way of making sure that dynamic options to choose from are permanently nurtured and kept alive.

We don’t just need ‘values’ and policies but policies and values in action. The way we do things is inextricably linked to the outcomes we achieve so we should apply co-production from purpose-setting to lasting high impact of services. There is a kind of a leadership role for the disability movement in that it has paved the way for users of any kind of public services to become confident and engaged critical partners of service providers – ‘user-led’ going way beyond just disability towards real win-win situations. For example, the NHS Five Year Forward View calls for ‘peer-led communities to emerge’, and real devolution would be a huge opportunity to move beyond traditional service provision by tapping into and using lived experience.

We can and should support people to look to ‘disability as an asset’ (DAA) as we do with ICanMakeIt https://www.disabilityrightsuk.org/how-we-can-help/i-can-make-it   and user-driven commissioning www.disabilityrightsuk/user-driven-commissioning but also explore further within this project on ‘Getting Things Changed’.

In the NHS we support staff to explore and build on lived experience when supporting patients. This is part of the delivery of the NHS Workforce Disability Equality Standard (WDES) https://www.england.nhs.uk/2016/09/wdes/ , whereby we place great emphasis on creating environments that are conducive to people taking self-initiative and supporting each other: building up trust and rapport and connecting in new ways with patients. The first step is that disabled NHS staff have coherent support in place for themselves from occupational health to reasonable adjustments and disability-related absence policies right through to fair and effective staff appraisals which don’t disregard but build on ‘disability as an asset’. Once all this is established, disabled staff groups often find the second step very natural, i.e. to look outwards to create the right parameters for peer modelling –train people, create supportive environments and co-produce boundary guidelines for disabled staff – patient encounters. Peer modelling then often just happens (e.g. when conveying a serious diagnosis) by modelling and picking up thoughts, ideas and behaviours which are successful in managing crises and long-term conditions on a day-to-day basis.

Seeing things through – from peer modelling as a patient into a paid job

There are important links between obtaining work and health outcomes as emphasised by the Joint Work & Health Unit https://www.gov.uk/government/groups/work-and-health-unit – not just for disabled people but for everyone, and peer modelling can kick-start new perspectives on employment. No doubt, managing crises and everyday life with a long-term condition mirror a lot of what a busy office and project management or a frontline hands-on support are about. With some facilitation, people often develop a natural grasp of what skill sets they already have or can easily stretch to – yet, the one bedrock that the best training and support cannot bring out is ‘values’: disabled people are in a good position to have the values needed to believe, hope and make things happen because they already know what life is like as a ‘disabled’ person and can share knowledge and experience with peers.

Conversely, from an employer’s perspective, encouraging disabled people to apply for roles (ensuring the right support is in place) will help maximise recruitment and retention objectives and hit far wider strategic goals as long as some myths are addressed www.skillsforcare.org.uk/mythskeycards :

Actively targeting and recruiting disabled people will:

– increase the quality of applicants with lived experience an organisation can build on

– promote diversity in the workplace

– improve and innovate services for and with disabled staff, consumers and patients

– lead to workplaces that better reflect the communities served.

 

Disabled people have invented ‘peer support’ by supporting each other across impairments – if an employer manages to reinvigorate some of that team spirit together with service users, this may be beneficial to the whole organisation. Peer modelling takes this a step further by focusing on creating the right environments for self-initiative to model and pick up such thoughts, ideas and behaviours from peers which are successful in managing crises and everyday life with a long-term condition.  

 

“Disabled people have the passion and empathy to support others and have learned to come up with creative solutions to the difficulties of everyday life. They see what and how things could improve.’ If only my employer had known /copyright Disability Rights UK, 2012

 

If you want to pursue peer-modelling in any context further, please contact bernd.sass@disabilityrightsuk.org

Disability Hate Crime

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Dr Sue Porter

Norah Fry Centre for Disability Studies

School for Policy Studies

University of Bristol


I’ve been reflecting on responses to the horrific mass attack on Disabled people in Japan on the 26th July (Japan knife attack: stabbing at care centre leaves 19 dead) and what a Disability Studies lens can bring to our understanding of such hate crimes.

Those attacked in Sagamihara were living in a 150 bed unit for people with learning disabilities, and as such we must assume that the majority of residents were removed from their families and geographical communities. We know that a key factor that encourages hate crime is the “othering” of Disabled people, which is reinforced by this sort of segregation. In the UK the Disability rights movement was born out of a desire to resist this sort of institutionalization of Disabled people and campaigned to provide the means for Disabled people to live within our chosen communities, whether independently or interdependently. Since the 1980s this has been at the heart of UK government policy, informing personalisation-related legislation and more recently the Care Act. Even at a time when many question whether austerity-related cuts in funding to local authorities and changes in welfare benefits are undermining the practicality of independent living for growing numbers of Disabled people in the UK, the importance of independent living is acknowledged as key to Disabled people being active members of society. However, amongst people with learning disabilities and a label of challenging behaviour or mental health need, there are still over 2.5k living in institutional settings – Assessment and Treatment Units – at a distance from their home communities, for extended periods and without discharge plans. There is little provision in the community for these individuals and a growing number of mini-institutions (18 or 20 bed) are either in operation or currently being built. So the ‘othering’ and segregation of this particular group of Disabled people goes on in spite of the rhetoric, the policy and the promises made after the Winterbourne View abuse scandal.

At the same time cultural references such as the recent Hollywood film ‘Me Before You’ continue to promote the message that it is better to be dead than Disabled. For some it seems hard to imagine that a life lived with impairment or chronic illness is a life worth living. On 11 September 2015, MPs voted overwhelmingly against legalising assisted suicide, but some media coverage would have you believe that the large numbers of the UK population believe it’s a humane choice to legalise assisted suicide for terminally ill or disabled people. Opposition to assisted suicide is not confined to the medical profession and religious groups. Many disabled people, including the very people whom would be most affected by any change in legislation oppose the idea – it’s worth noting that no organization of or for disabled people has campaigned for assisted suicide (including those representing people with Multiple Sclerosis and Motor Neurone disease most often cited as likely to ‘benefit’ from such changes), and that Disabled-led groups like Not Dead Yet UK[1] continue to raise the issue, most recently protesting at the London premier of ‘Me before You’. At the time of writing the state of mind of the perpetrator of the attack in Sagamihara is unclear, what is apparent however is the culpability of the media in perpetrating and endorsing negative narratives of disability, potentially feeding the thinking and actions of some individuals.

The Sagamihara attack was a hate crime undertaken by an individual who denied the value of the lives he took, the 26-year-old former employee of the facility was quoted as saying. “It is better that disabled people disappear”. Hate crimes are defined as any crimes that are targeted at a person because of hostility or prejudice towards that person’s: disability, race or ethnicity, religion or belief, sexual orientation or transgender identity (UK Equality and Human Rights Commission). The UK Equality and Human Rights Commission report that there has been significant progress in the reporting and recording of disability hate crime since it was first included in national policy in 2008 . Police records show an increase from 800 in the first year to 2,508 in 2015/16. The number of prosecutions for hate crimes against Disabled people in the UK last year was up by 41.3% compared to 2014/15. In 2015-16 there were 941 prosecutions for disability hate crimes. (Action Against Hate, The UK Government’s plan for tackling hate crime. July 2016). Disability hate crime represented 5% of police recorded hate crimes in 2014/15, but this is in contrast to the Crime Survey for England and Wales where disability hate crimes represented one-third of hate crimes. The under-reporting of disability hate crime demonstrates the importance of more victims feeling able to come forward, and the prevailing attitudes and cultural references surrounding us in society risk some Disabled people internalising the negative perceptions of the value of their lives.

Regardless of its form and intention, prejudice always has the potential to cause harm because it reduces the value, status or importance attached to people from ‘the other group’. The ‘othering’ of Disabled people, and the belief that disabled lives are not of value raise fundamental questions about social justice in our society. We need to come together to fight for a global society where diversity is valued and where we can all live free from abuse, fear and oppression. And as the understanding of hate crime increases, it becomes even more important that officials across government engage with those working in the research community and with organisations of Disabled people to build the evidence base for policy interventions.


[1] Not Dead Yet UK is a network of disabled people in the UK who have joined a growing international alliance of disabled people, who oppose the legalised killing of disabled people. All those involved are disabled people including people with physical and sensory impairments, learning difficulties, and mental health conditions.


 

 

 

 

European citizens who are disabled: what about them?

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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.

 

In the UK itself, there is plenty of course to talk about, including four areas highlighted by Community Care on June 24th. There are the possible delays to social care reform now being able to progress through Parliament, and the massive social care implications of further budgetary cuts on local councils. There are also issues around who provides support to older and disabled people, the 80,000 direct frontline workers who come from other EU countries, and on whom we depend. And the final but overriding issue is about Human Rights, and the loss of the overall protection of the European Charter of Fundamental Rights, which could negatively impact on disabled people for instance in the area of employment. However, the disabled people’s movement in the UK is still a strong force, and continues to demonstrate how much can be achieved through oppressed people’s voices being foregrounded in co-produced policy and research, such as in our ‘getting things changed’ project. These principles will be increasingly important now in ensuring that all communities in the UK have a voice that is really heard and included.

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

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.

 

On Practices, Change, Recruitment, and (Mis)Fitting

A Think Piece by Dr Stanley Blue

Theories of practice are diverse and varied, but one central idea is that social scientists should take social practices as their main focus and unit of enquiry. Although ‘practice’ is variously understood, taking a ‘social practice approach’ does not equate to focussing on best practice, or people’s practices. Instead it is a term that denotes a ‘routinized’ type of social activity (Reckwitz 2002). This approach amounts to a significantly different ontological and epistemological view than in most social research, a significantly different way of seeing and studying the world. Rather than starting with an understanding of the world as made up of people, their motives, desires, and needs or symbols, signs, cultural and material objects, etc. we start with routinised social activities as entities that consist of various elements and that interconnect and interrelate to form the social world and establish social order. Giddens (1984) describes the organisation of practices in space and time as the proper domain of the social and we should study it as such if we are to find ways to of better understanding a range of important social issues.

One problem with starting with practices is that at first it appears to leave people out of the frame. Human beings are often central to studies of the social and to studies including disabled people.  If we take practices and not people as the central unit of enquiry, it seems as if we are doing people, their views, their needs, and their experiences a disservice.

It is true that an ontological approach that privileges social action over the attitudes, motivations and values of individuals  does not focus on the minutiae and complexity of human interactions, or on interpersonal and inter-group power relations. It is therefore not an approach best equipped to capture the requirements, circumstances, and capacities of individuals. However, whilst studies that have privileged these features have had success in improving the lives of disabled people, new frames are required if we want to do more to get things changed.  A focus on practices offers fresh ground for conceptualising the social world and new opportunities for improving the lives of disabled people, importantly by accounting for the social context of what people do. It should be noted, that understanding the effect of the constitution of society on disabled people hardly a new idea in disability studies.

One of the main focal points over the past thirty years in disability studies has been transforming the way we think about disability. Disabled people re-defined the ‘problem’ of disability as one that resides in the processes, systems and barriers that constitute a disabling society. In that context, disability studies and theories of practice have much in common. Whilst theories of practice are able to give a very good account of the routinised, embodied and interconnected everyday practices that make up social life, disability studies has many concepts and tools for understanding how everyday social life privileges certain groups whilst disabling and excluding others.

The ambition of the ‘Getting Things Changed’ project, which is informed by these ideas, is to understand how dis/abling practices might be shifted, modified and changed to improve the lives of disabled people. One argument levied at theories of practice is that they provide a very good account of social life, but that have difficulty in accounting for how practices change. Sometimes it feels like practice theory is an account of stasis rather than one which might encourage or enable change. However, this is certainly not the case. Theories of practice are able to provide very good and careful accounts of change. Whilst these debates are ongoing within the field, theories of practice offer complex and nuanced accounts of change that take into consideration changes in technologies, infrastructures, materials and embodied skills that contextualise and complement explanations of change based solely on individual narratives, meanings and motivations.

 

One very useful and under developed tool for thinking about change is the idea of ‘recruitment and defection’ (Shove and Pantzar, 2007). If our analytical focus is on practices (or doings), then it is important to consider who carries a certain practice, who gets recruited, and who gets excluded. This idea emphasises a way of thinking about practices as entities that capture the resources, energies and commitments of people. “… we might think of practices as vampire like entities capturing populations of suitably committed practitioners (i.e. hosts and carriers) in order to survive.” (2007, 166)  Importantly practices capture the resources of particular groups of people. For example, commuting on the train likely recruits from professionals, sleeping in until 12pm likely recruits well from student populations(!) whilst marathon running most likely (though not exclusively) recruits from the physically fit. Similarly many working practices recruit from populations that are able to begin working at 9am. For people who require a carer to arrive, who might arrive later than 9am, to assist them in getting up, this practice so organised would exclude them.

The populations from which practices recruit depend on the changing organisation and integration of materials, meanings and competencies. For example, as new technology becomes available watching Netflix on a tablet device might recruit in the first instance from younger generations. However, increased reproduction of this activity leads to development in social meanings and competencies so that this practice is able to capture commitment from wider populations. Changing materials, meanings and competencies can also lead to defection, or exclusion from practice.

A useful concept that complements the idea of ‘recruitment and defection’ when thinking about disabling society is Garland-Thomson’s concept of ‘misfits’ (2011). She makes the case that fitting and misfitting is a relational process between body and environment, that (re-)produces both in action. She writes: “The relational reciprocity between body and world materializes both…” (595)

She makes the case for examining the quality of the relationship between body and world as one of fitting or misfitting. Garland-Thomson also explains how we might turn misfits into fits and demonstrates  how this process works in the reverse:

“… a white cane or a brailed book is an element of the sustaining environment for a blind person to encounter a fit that accommodates the minority embodiment of blindness in an environment built for the sighted. Such prostheses ease the material divergences between bodies and their locations, making misfits into fits.” (601)

This argument fits well with the idea of ‘recruitment and defection’. Garland-Thomson’s example shows that the introduction of new and different material elements such as a cane or brailed book changes the relationship between bodies and environment ‘making misfits into fits’. Changes in configurations of elements modify the ability of a practice to recruit from a particular group. This includes materials, but also competences and social meanings as well. In this way fits and misfits could happen between any group and any practice at any time, and these can be more and less fixed, more and less fluid and more and less open to change.

This argument has a double benefit. First it reframes vulnerability and power away from an inherent quality of someone or something and attributes it to a relational process:

“The relational and contingent quality of misfitting and fitting, then, places vulnerability in the fit, not in the body.” (600).

And second it demonstrates that this process is continuously enacted by everyone:

“Any of us can fit here today and misfit there tomorrow.” (597)

Working with the concepts of practice, recruitment, and (mis)fitting has the potential to be give a rich explanation of how practices recruit from particular groups of people, and how this process of (mis)fitting in disabling society shifts and changes over time.

 

References:

Garland-Thomson, Rosemarie. 2011. Misfits: A Feminist Materialist Disability Concept. Hypatia 26 (3):591-609.

Giddens, Anthony. 1984. The Constitution of Society: Outline of the Theory of Structuration. Berkley: University of California Press.

Reckwitz, Andreas. 2002. Toward a Theory of Social Practices: A Development in Culturalist Theorizing. European Journal of Social Theory 5 (2):243-263.

Shove, Elizabeth, and Mika Pantzar. 2007. Recruitment and Reproduction: The Careers and Carriers of Digital Photography and Floorball. Human Affairs 17 (2):154-167.