How transformed is care?

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Dr Sandra Dowling, a lecturer in Disability Studies at the Norah Fry Centre for Disability Studies discusses deinstitutionalisation in the context of the Transforming Care Policy programme.

People with learning disabilities are still, in some circumstances, leading institutionalised lives – the Transforming Care programme has a long way to go, and we must not forget those people with learning disabilities with the highest levels of ‘need’ who are experiencing the highest level of separation from an ordinary life. Recent decades have seen significant changes in the lives of people with learning disabilities in the UK. Once routinely institutionalised, distanced from home communities or their Right to a life like any other, people with learning disabilities were relegated to the shadows of the everyday and had limited opportunity to effect change. This article suggests these issues might still be affecting too many people with learning disabilities in 2018.

Advocacy and activism amongst people with learning disabilities and their allies has been a powerful force in altering the opportunities available to some people. To be respected, to be heard, to have choice and to really have the chance of a life like any other have been common demands. For many people these demands, these requests, have to some extent been realised. In the UK today some people with learning disabilities live in a home they have chosen, some have a job, some have regular contact with family and friends and some feel part of their community. Too many do not.

The challenge to realise the fundamental human rights of this section of the population is ongoing. The urgency of the challenge is very much determined by personal position. If you are a person with learning disabilities or indeed an ally, these challenges are of course urgent. Although recent policy does commit to a transformation in social care for people with learning disabilities, urgency to transform this to practice is not consistently apparent.
Major policy initiatives and legislation in recent years have produced a convincing rhetoric to support ideas of individual autonomy, inclusion and a role in decision making about important life matters. The Care Act 2014, for instance, details guidance for adult social care which, importantly, includes the principle of individual wellbeing. In practice wellbeing involves people having control of their day to day life, living in suitable accommodation and being able to contribute to society. It is a requirement of The Act that local authorities take people’s views, wishes and beliefs into consideration, and that their efforts support what people themselves want to achieve in their own lives.

The Transforming Care Policy Programme produced a raft of reports, guidance and policy following the shocking abuse of people with learning disabilities residing in Winterbourne View Assessment and Treatment Unit. The overall aim of Transforming Care has been about improving health and social care services to enable people to live in the community, to have good support and to be close to home. It aimed to address the high numbers of people with learning disabilities living for too long in Assessment and Treatment Units (ATU), often at a long distance from their families and without adequate discharge planning. However, since the scandal broke in 2011, and following a robust policy response, little has changed. The numbers of people in ATU settings has remained stubbornly high, provision of sufficient support in the community has not met need and discharge remains an elongated process for many.

Narratives of Home, a study funded by the NIHR School for Social Care Research, conducted within the Norah Fry Centre for Disability Studies (NFCDS), has interviewed 18 people with learning disabilities and three parents of people discharged from Assessment and Treatment Units (ATU) during the lifetime of Transforming Care. This narrative study has collected people’s stories of resettlement in the community following their hospital stay. Of those interviewed, 12 were male and 6 were female. Time spent in ATU settings ranged from 4 – 20 years. The legacy of institutional living clearly impacted on their resettlement experiences.

The factors which are identified as important to individuals are just what you would expect. Security, choice, a valued social role, friendships, fun and the opportunity to take pleasure in things which are important to you. But what is different is that the people that we interviewed, even though living in the community, still often live within parameters defined by others. Some described their attempts to ‘get out’ of the ATU by ‘doing what the doctors said’ or ‘just do what you are told, keep your head down, get through all the programmes and hope for the best’. These experiences travelled beyond the walls of the ATU into their now ’independent’ lives in the community. In interview people checked with present support workers whether they were saying the ‘right thing’, or whether it was ‘ok to say this’. Some were so heavily medicated that they could not remain awake throughout the interview.

Choice and autonomy was found in things such as choosing how to decorate your home, or what to have for a meal. A deeper sense of independence of thought and action though, remained elusive for some. Institutionalisation, just as a hundred, or fifty or twenty years ago produces the same results. It dis-empowers individuals, depleting independence of thought and sense of self. A good life happens at a deeper level than what can be seen on the surface of community living. The need to address issues of identity and equality remain pertinent. Deinstitutionalisation remains a goal.

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The Social Disinvestment State Unleashed

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Dr Noemi Lendvai-Bainton, Senior Lecturer in Comparative Urban and Public Policy at the School for Policy Studies, discusses the recent Hungarian election and how it reflects the trend towards political populism & the rise of illiberal democracies.

After a very long and rather Kafkaesque election night in Hungary, FIDESZ secured a victory for a third term of governing with a two-thirds majority. After eight years in government, the vote for the radical right in fact increased, with both Fidesz (49% of votes) and Jobbik (a far–right party with 19% of the votes) gaining more votes than four years ago. Tellingly, Orban in his victory speech thanked ethnic Hungarians living abroad (largely dual citizens of Romania, Ukraine and Serbia with voting rights) who ‘defended Hungary’, he thanked his Polish friends and Kaczyński, and he gave thanks for all the prayers (with no end to religious references).

The campaign was a single-issue, emotively hostile and negative campaign, focusing on the migration issue and financier/philanthropist George Soros, that erased public policy as a matter for debate all together – the end of an era when negative campaigns can’t be electorally successful, it seems. A déjà vu of the Brexit campaign in which the migration issue captured the public discourse.

This Hungarian result talks to a lot of different issues. It reflects a deep division between the capital Budapest, where the opposition won by a two-thirds majority, and the ‘country’ (countryside) where Fidesz won almost outright. It reflects on the widespread and significant institutional ‘reforms’ in the country which confidently delivered votes in small towns and in villages through channels of appointed officials, public finances, and EU funds (no need for subtle pressures here – civil servants were asked to take a photo of their ballot papers and email it to a central account; Kindergarten teachers were told to hand out Easter chocolate to parents as a ‘gift’ from Fidesz). The election result also points to the fact that corruption has become normalized – despite unprecedented levels of corruption concerning both EU funds as well as public funds, the government secured its third term.

No longer can one think that populism is a short-term political project. Orban can now thrive on the basis that his legitimacy with a high turn-out (70%) at the election makes him a stronger leader than many of his counterparts in (Western) Europe. His anti-EU rhetoric is expected to intensify in the coming months and years and he is already working hard on building a new transnational coalition against ‘liberal’ Western Europe and to evict all NGOs from the country that have political missions.

Read more…

This article was first published in Social Europe on 19 April 2018.

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Justice for victims of sexual abuse and harassment. Lessons for Westminster?

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Dr Lis Bates is a researcher in gender-based violence at the School for Policy Studies, and a former clerk of the House of Commons

The problem with Westminster

As a former clerk of the House of Commons, the recent Newsnight coverage(i) depicting a culture of unchecked bullying and sexual harassment by some MPs took me by surprise. Not because of the allegations: the stories reported, and many more, have long been open secrets in Westminster. But because, for the first time, the corrosive culture of normalising this behaviour was revealed. What is new is that the careful investigation of reporters Chris Cook and Lucinda Day has exposed a pattern of abusive Members not being held to account, and a historic management culture of quietly moving victims who speak out. This is a culture which has normalised the acceptance of bullying behaviour, refused to shine a light on the bullies, and thus tacitly condoned it. This is the same cultural quicksand which led us to Weinstein, Bennell and Saville: a wilful collective blindness.

The Newsnight investigation showed that some victims were believed but no action taken, and others’ accounts were minimised. The problem is, the effect is the same–a silencing of an individual’s voice, and an absence of justice. The House of Commons management’s ill-judged initial response to the story eloquently illustrates this: denying that there is any longer a problem, and insisting on looking forward with a zero tolerance approach to bullying and harassment sits jarringly with a refusal to look at past cases, and a policy under which not a single claim of sexual harassment has progressed even to mediation.

In this context, the publication on 8th February of cross-party working group recommendations to strengthen Parliament’s response to harassment, bullying and sexual harassment at Westminster(ii), and the setting up of working groups to beef up grievance policies and drive cultural change, are to be welcomed. The proposals finally start to strengthen an investigatory and sanctions system which for years has been notoriously weak, characterised by handing decision-making powers back to political parties, an absence of accountability for those who abuse their power, and consequently a significant lack of faith in the system by those who might be victims of harassment.

Since the Newsnight story broke, what has increasingly struck me is the parallels with the experiences of victims of sexual and domestic abuse: being disbelieved, discredited, or blamed for ‘bringing it on themselves’, for being weak or not resilient.

Current research from the Universities of Bristol, Cardiff and UWE (Justice, Inequality and Gender-Based Violence (hereafter ‘Justice project’)(iii), led by Professor Marianne Hester and funded by the ESRC, is casting new light on why sexual abuse and harassment cases require handling with particular care. During 2016-17, the research team interviewed over 250 victims of domestic and sexual abuse and harassment to ask “What is justice?”. The answer, it seems, is humblingly simple: being listened to, getting a genuine apology, and being given a voice. There are some direct lessons from our findings for Westminster, as it seeks to respond to sexual harassment, abuse and bullying.

Sexual harassment is about power inequality and rarely occurs in a vacuum

As with other interpersonal abuse, at its core, sexual harassment is about power inequalities which allow one person to exploit another with impunity. It often overlaps with other forms of harassment and abuse. In the Justice project, over a third (39%) of interviewees reported having experienced sexual harassment in the workplace or on the street. Over two-thirds of these women also reported having experienced rape or domestic abuse. The figures confirm that these experiences rarely operate in isolation: sexual harassment and violence frequently occurs as part of a continuum which disproportionately affects women.(iv)

The dynamics of sexual harassment and abuse in Westminster are even more particular. The exploitation of one individual’s power over another is exponentially magnified when the dynamics of an employer-employee relationship, and the power hierarchies of political structures, are fed into the mix. Added to this, the political setting means that (alleged) perpetrators can often use (implicit or explicit) intimidation tactics to undermine or discredit victims, and victims are often shamed or intimated into silence. This toxic cocktail was recognised by Caroline Lucas MP in describing the dynamics of power in Westminster which allows some MPs to get away with belittling and humiliation tactics against staff.(v)

It is therefore important that the working group report has recognised the particularities of sexual harassment, and proposed a separate process and systems of remedy and support from that for complaints of non-sexual bullying and harassment. It is important, too, that plans are underway to provide specific and specialised training to MPs, Peers and staff across Parliament about sexual harassment.

What victims/survivors want

Central to the deliberations of those investigating current and future provision, are the voices of those who experience sexual harassment and abuse.

To be listened to. Part of the process of justice, victims told the Justice project, was being given the space and place to say what’s happened, and be heard. A strong theme throughout our interviews was the importance victims placed on external recognition that harm was done. This was very often the first response to the question “What is justice?” and, for many, overrode ideas of punishment or revenge. As one female victim of domestic abuse and sexual harassment said, “he doesn’t accept that there’s anything wrong–and that isn’t justice to me. Justice would have been a realisation on his part that what he did was utterly dreadful and the impact it had was utterly dreadful”.

Here again is a parallel with Westminster–it is striking that all the alleged perpetrators of sexual bullying have vigorously denied engaging in any harmful behaviour. One has even gone so far as claiming to even have no memory of working with the victim. And, the historic management response of moving victims has the effect of strengthening the same message that the victim is to blame. Participants in the Justice project identified this pattern of behaviour when asked to define what “injustice” meant to them. One female victim of sexual harassment, domestic abuse and child rape said, “that person… does something wrong but then tries to put the blame onto the person they’ve actually done wrong by”.

The perpetrator to be held accountable. This was the other side of the same coin. It was very important to victims that the perpetrator take (at least partial) responsibility for the harm done. For many victims, ideally this would come from the perpetrator themselves, and involve a genuine apology and expression of remorse. But in many cases this had not happened. Here, the next best thing was for another party (the state, the police, their friends and family) to offer this recognition, and to hold the perpetrator (rather than the victim) responsible.

To have choice, control and voice in the process. Another key element in achieving justice for victims was getting back some control over what happened to them. This meant informed choices about what remedies they could pursue, and being put at the centre of decision-making about their case. The Justice project is finding that those experiencing violence and abuse sometimes choose not to pursue public or punitive justice options for a range of reasons, including fear of retaliation or consequences and concern for their status or assets (which, in the case of workplace sexual harassment, could be their job or professional reputation). This makes it vital that they can access a range of remedies when making a complaint. In part, this is because they often have had power and control taken away from them as part of the abuse or harassment. Offering them some control over the process therefore becomes an important part of justice.

For some victims (generally those not experiencing abuse from an intimate partner), a facilitated dialogue with the perpetrator offered an opportunity to have a voice, express the impact of the harm done to them, and create the space for the perpetrators to hear the victim and express remorse. This was especially true when the abuse had occurred within a closed or tight-knit (e.g. activist, traveller, religious) community, where victims often faced additional barriers to reporting abuse because they feared losing their membership of the community–for instance, being ostracised, disbelieved or expelled. These contexts affected the choices victims made about reporting, and have parallels with victims who are members of other closed groups like political parties. In the case of one victim we interviewed, the community organised an informal meeting between them and the perpetrator. For her this showed that the community recognised the harm done, and held the perpetrator to account.

Great care is required with mediation or guided discussion approaches in contexts (like Westminster) where there has been a history of institutional downgrading and minimising of complaints. In these cases, it is even more vital to make sure that victims are taken seriously, that specialists who understand the dynamics of sexual violence are engaged, and that remedies should always include options for punitive sanctions alongside any less formal routes.
However, there is growing evidence that less formal justice approaches can play an important part in some cases of sexual harassment, but only when they involve specialist mediators who can recognise power imbalances (including gender) and challenge abusive behaviours through a process of ‘transformational mediation’.(vi vii) Such mediation only works when it is voluntary and other options are also available to the parties involved. (viii) It should never be used as an alternative ‘first step’ in responding to allegations of sexual harassment, since the process by which a perpetrator accepts responsibility for their actions often requires a more formal investigation or finding of facts. But it can form part of an overall response. If not managed by specialists, mediation approaches can perpetuate harm; but when victims are properly supported by specialists who can reduce the intensity of their participation, they are valued by victims because of the recognition involved.(ix)

Support through specialist advocacy. The evidence from the Justice project and elsewhere (x xi xii) is unequivocal on the importance and effectiveness of specialist victim advocacy. Specialist sexual violence advocates play a crucial role in supporting victims using counselling, emotional support through court/other justice processes, practical help, and referrals to other support agencies. Advocates also can change cultures in other agencies and actors through so-called “institutional advocacy”.(xiii) The Justice project has examined over 400 police rape case files and found a statistically significant link between victims receiving support from a specialist sexual violence advocate and a criminal charge being made.

This body of evidence underlines the importance of victims getting targeted advocacy support from specialists who understand the dynamics of gendered abuse and harassment. In this light, it is positive that the Commons working group proposals include the commissioning of specialist ISVA support for any complainants. Such support should not be contingent on what resolution or justice processes victims choose to follow–it is a vital element irrespective of whether the route to remedy is an internal process, a formal resolution, or criminal justice.

Moving forward

Victims of sexual abuse and harassment want to be listened to, taken seriously, for the perpetrator to be held accountable, and to be able to make their own, balanced, choices about what happens next. Our society, and criminal justice system, does not yet get this right. The same is true of Westminster, where the culture for many years has been one of minimising and victim-blaming on a corporate scale. The new proposals from the Commons working group are a good step towards addressing this, and the most recent indications from the House authorities suggest a renewed commitment to change. There is rightly a focus on adequate sanctions–for too long this has been a deficit. But culture change is just as important, in particular reversing the practice of dismissing or moving victims, in favour of shining a bright light on the harassers.

The litmus test of any new system must be: if these events occurred today, would those victims feel able to come forward, be listened to, and have faith in the system and its decision-makers to deliver justice for them? Unfortunately, this is not yet the case. As the working group’s staff survey found, a majority of those who had made a report under existing procedures were dissatisfied with the choices given them for next steps, and the same proportion dissatisfied with the level of understanding shown about what an appropriate remedy, outcome or sanction would be from their own perspective. Similarly, the quotes from serving Commons employees following the management’s initial response to the Newsnight story clearly showed a lack of confidence, even disbelief and anger.

The current public spotlight gives an impetus and opportunity for meaningful and lasting change. But, there is one big piece still missing. How can there be confidence in the system if those who are widely known to have transgressed are still alllowed to get away scot-free? There needs to be proper investigation and justice for those who have already suffered. Recent criminal investigations (Saville, Bennell, sexual exploitation of girls in Rotherham) have shown that, even in historic cases, perpetrators can and should be held to account for their actions. Should Parliament and the political parties not now do the same?

[i] Newsnight, 2018a [TV]. BBC2. 8th March. 22.30.
[ii] Parliament (2018) Cross-party Working Group on an Independent Complaints and Grievance Policy: Report.
[iii] The research team will be publishing a range of papers from the project during 2018, including on models and victim perspectives of justice, criminal justice attrition in rape and domestic abuse cases, procedural justice, child contact in domestic abuse cases, BME womens’ experiences of justice, Sharia and other religious arbitration.
[iv] Kelly L. (1987) The Continuum of Sexual Violence. In: Hanmer J., Maynard M. (eds) Women, Violence and Social Control. Explorations in Sociology (British Sociological Association Conference Volume series). Palgrave Macmillan, London.
[v] Today programme, 2018 [Radio]. BBC Radio 4. 9th March. 06.00
[vi] McCormick, M.A. (1997) ‘Confronting social injustice as a mediator’, Mediation Quarterly, Vol 14, 4.
[vii] Irvine, M. (1993) ‘Mediation: Is it appropriate for sexual harassment grievances?’ Ohio State Journal On Dispute Resolution. Vol 9, 1.
[viii] McLay, Leah (2009) “Workplace bullying: To mediate or not?,” ADR Bulletin: Vol. 11: No. 1, Article 1. Available at: http://epublications.bond.edu.au/adr/vol11/iss1/1
[ix] Fileborn, B. and Vera-Gray, F. (2017) ‘“I want to be able to walk the street without fear”: Transforming justice for street harassment’, Feminist Legal Studies 25: 203-227.
[x] Hester, M. and Lilley, S.J. (2017) ‘More than support to court: Rape victims and specialist sexual violence services’, International Review of Victimology 1-16.
[xi] Howarth, E., Stimpson, L., Barran, D. and Robinson, A. (2009) ‘Safety in Numbers: Summary of Findings and Recommendations from a Multi-site Evaluation of Independent Domestic Violence Advisors’.
[xii] SafeLives (2017) ‘Insights Idva England and Wales dataset 2016-17’.
[xiii] Coy, M. and Kelly, L. (2011) ‘Islands in the Stream: an evaluation of four London independent domestic violence advocacy schemes’. London: London Metropolitan University.

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No single food or nutrient is to blame for obesity, so what is the right balance?

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Dr Laura Johnson, Senior Lecturer in the Centre for Exercise, Nutrition and Health Sciences, discusses her new paper in which she assesses the impact of dietary patterns on obesity and how modelling may help influence change in both personal habits and public policy.

No single food or nutrient is to blame for obesity. There so many routes from diet to overeating and weight gain, and in real life foods and nutrients aren’t eaten on their own. So, it’s misleading to look at foods that way in research, it’s the overall balance of diet that matters.

I realised this a while ago when I  used detailed records of food intake from children age 5 and 7 in the ALSPAC cohort to generate an overall diet score that predicted obesity later on. I thought that eating more fat, less fibre, and having a more energy dense diet (more calories in each bite) would all feature in a diet that fuels obesity (or an ‘obesogenic’ diet). I used reduced rank regression or RRR (a pimped up version of factor analysis, see excellent explanation by Andy Field here) to find the best combination of foods to capture differences in the fat, fibre and energy density of the children’s diets. RRR generates a score based on what you eat. It’s calculated by adding up the intake (grams/day) of 42 groups of foods that are weighted for importance and a higher score means your diet is more obesogenic. I showed that children with the highest pattern score at age 7 were 4 times more likely to have too much fat by the time they were 9 years old (other researchers have since seen similar associations in adolescence and adulthood).

A pretty strong result, right? But, what use is a score made up of 42 foods? Isn’t it too complicated to ever be the basis for changing behaviour? I don’t think so, not if we use computers to deal with the complex calculations. All we need to know is what foods have been eaten (by individuals or populations) and then the obesogenic score can be computed automatically. We would then have a single score indicating whether the overall balance of your diet (or the Nation’s diet if thinking in policy terms) is more or less obesogenic. A total diet score would be better than current measures which only focus on fruits and vegetables or sugar-sweetened drinks, which let’s be honest, no one believes are going to solve the obesity epidemic on their own!

In our latest paper we asked “Do the same foods make up an obesogenic diet regardless of whether you are young or old, boy or girl, rich or poor?” (Because the ALSPAC score might only matter to children living in Bristol in the late ‘90s) “Who in the UK has a more obesogenic diet?” (Because those people need the most help to change) and “Are diets getting more obesogenic over time?” (Because that might suggest national obesity policy isn’t working).

To find some answers we used diet diaries from nearly 10,000 adults and children taking part in the UK National Diet and Nutrition Survey between 2008 and 2014. We repeated the RRR in different groups and found it was remarkably stable – the same foods came out as most important to an obesogenic diet over and over again. So, we can feel confident that the obesogenic pattern score and that way foods are weighted by importance reflects the way everyone eats in the UK today. The most and least obesogenic foods we found were (sized and in order of importance):

In terms of whose diets are most imbalanced we found massive social gradients with those in manual jobs and households earning less than £15,000/year having the most obesogenic diets, which mirrors social inequalities in obesity prevalence. Among children, diets became more obesogenic between 2011 and 2014. Among adults a more obesogenic diet went hand in hand with more time spent watching shows on TV/Laptops/Tablets, less physical activity, and eating takeaways more frequently.

All these trends are a starting point for targeting and testing interventions designed to make small changes across a range of foods to shift the balance of diet. By using our score, it could be possible to gauge how multiple changes to policy or what we eat adds up to a less obesogenic diet and with luck prevent obesity in future.

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

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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.

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More people with learning disabilities should be on TV!

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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/

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‘Fat but fit’ – Lessons in the language of a press release

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This week a paper from the EPIC-CVD which I co-authored was published in the European Heart Journal. Unfortunately the article was subsequently promoted in the press with the headline ‘Fat but fit’ still risk heart disease, encouraging a belief that physical activity offers no heart health benefit to those that are overweight.

This headline is misleading because most people understand ‘fit’ to mean physically activity, however the paper didn’t measure physical fitness. Instead it measured metabolic health (ie, high blood pressure, cholesterol and blood glucose) which some term ‘medical fitness’, and is often shortened to ‘fitness’. Hence the confusion.

What the paper really shows is that being overweight and having poor metabolic health both contribute to increasing risk of coronary heart disease (CHD), or a heart attack, to put it more simply. If you group people based on their weight status and metabolic health then the risk of having a heart attack increases in the following order:

 

 

 

 

 

 

To provide some context to these numbers, we know that having a heart attack is more common in older people – that risk increases with age by about 10% per year. Being overweight and healthy notionally makes you 2 ½ years older (in terms of heart disease risk) than a normal weight and healthy person. Whilst being obese and unhealthy notionally makes you 15 ½ years older!

My take home message from these figures is that having poor metabolic health is much worse than being overweight or obese on its own; however people carrying excess weight still don’t get off scot-free. So, if you can improve your metabolic health (whether you are normal weight or overweight or obese) you can substantially reduce your risk of CHD. Equally if you can reduce your weight (whether you have good or bad metabolic health) you can reduce the likelihood of a heart attack even further.

What about being fit, ‘physically active’ fit?  

If you are overweight and are physically active then this will more than likely be good for your health – we know that physical activity has beneficial effects on metabolic health. The long-standing fat-fit hypothesis states that the health benefits of being physically active can cancel out the increased risk of being overweight, so it’s possible to live just as long if you are fat as long as you are fit. Does our work say anything about that idea? Not really, not without a lot of inference and assumptions. You’d need a study of physical fitness and weight and metabolic health to get to the bottom of that one (a study like this).

What is apparent from this analysis is that grouping people based on continuous measures of health is spurious. If you look at the ‘apparently healthy’ overweight or obese group you’ll see that their blood pressure, cholesterol, blood glucose, etc are actually still higher than the supposedly equally healthy normal weight group. To me this suggests that metabolically healthy obesity doesn’t really exist, not long-term. The people in the healthy obese group just didn’t quite meet the cut-offs for being defined as ‘unhealthy’ yet, suggesting it’s only a matter of time before they cross over to the unhealthy group.

So what’s the point of putting people in boxes, we are all individuals after all, with our own unique profile of risk factors. I’d say let’s try and keep continuous risk factors continuous and aim for lowering them across the whole range using whatever methods have been shown to work in the past. Physical activity and diet can both help in different ways, to either improve metabolic health or promote weight loss, so aiming for a healthier lifestyle is as important as it ever was.

This blog was written by Dr Laura Johnson, a Lecturer in Public Health Nutrition in the Centre for Exercise, Nutrition and Health Science, School for Policy Studies.

 

 

 

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Back to school for MyHeart Beat

Dr Laura Johnson, is a Nutritional Epidemiologist and Senior Lecturer in Public Health Nutrition. Her research focuses on establishing the role of overall dietary and eating patterns in the prevention and treatment of obesity, diabetes and coronary heart disease as well as understanding the factors that influence food intake and appetite control. In this blog, she reflects on a recent visit to Malaysia to research adolescent lifestyle in conjunction with the MyHeart Beat project.

In April, this year I went back to school, some things were just the same as I remembered but others were very different, mainly because I was in school in Malaysia. I had found myself in Kuala Lumpur for work and I was visiting schools to find out exactly how big a task we had taken on for our new collaborative research project MyHeart Beat (Malaysian Health and Adolescents longitudinal Research Team Behavioural Epidemiology and Trial).

MyHeart Beat is funded by the UK Medical Research Council and Academy of Sciences Malaysia (Newton Ungku Omar Fund). The project aims to explore how changes to diet and physical activity could improve heart health in Malaysian adolescents. It’s a collaboration between researchers in the University of Bristol’s Centre for Exercise, Nutrition and Health Sciences and the University of Malaya’s Faculty of Medicine. Our aim is to find ways for Malaysian teens to be more active and eat better, which will help them in the future to avoid obesity, type 2 diabetes, and cardiovascular disease, chronic conditions that are affecting ever increasing numbers of people in Malaysia.

MyHeart Beat builds on MyHearts (Malaysian Health and Adolescents longitudinal Research Team study) an excellent project by researchers at the University of Malaya, in collaboration with researchers from Queen’s University of Belfast, who have spent the last 5 years following more than 1000 teenagers from the age of 13 to 17 years in 3 Malaysian states. MyHearts has collected detailed information on diet, activity, lifestyle and health and has shown that 15% of adolescents are overweight and a further 9% are obese. Physical inactivity is rife (64% of teens are inactive) and breakfast habits are erratic (25% of teens never or only occasionally eat breakfast). We’re planning more analyses of this rich data to find out about the patterns of behaviour related to obesity and heart health.

I’ve previously explored patterns of food intake associated with obesity and shown that it’s a combination of high-fat, low fibre and energy density that is important rather than any single aspect of diet. Key foods part of an obesogenic dietary pattern in the UK include fruits, vegetables, and high-fibre bread (not eating enough of them) and white bread, crisps, sweets, and processed meat (eating too much of them). We expect the most common foods eaten in Malaysia to be different to the UK but in principle whatever foods there that make a diet energy dense, low in fibre and high in fat are still likely to be those most important for preventing obesity. In MyHeart Beat we will apply the same method for finding patterns of behaviour (reduced rank regression, RRR). RRR is a statistical technique that, for dietary patterns, adds up intakes of all foods after giving some foods more emphasis than other (by giving pattern loadings). RRR works out how much emphasis to give different foods by trying lots of options until it settles on the one where foods are combined in such a way that the energy density, fibre and fat content of the whole diet can be predicted best. You end up with pattern loadings (numbers) for each food and the larger the loading the more important that food is for predicting the obesogenic features of diet. Using the loadings, it’s then possible to rank foods in order of importance and identify exactly what foods to change to make diets less likely to lead to obesity. With our analyses, we hope to find out not only what the most important foods are but also what activities are best for maintaining health throughout adolescence. Once we know what the high-risk behaviours are we can start working out ways to help teenagers to change.

Although, even when you know what to change you then have the task of working out how to change it. There are many different routes we can take to change behaviour; the sheer number of options can be challenging but is also what makes the project fascinating. The MyHeart Beat team has lots of experience trying to change behaviour in children in the UK, Europe and Malaysia. For changing diet we’ve attempted intensive programs led by dietitians as well as computer based courses supervised by teachers. Innovative strategies we’ve tried for increasing physical activity have included after school clubs led by teaching assistants; dance workshops and harnessing the power of social networks to spread positive physical activity messages. In Malaysia, the MyBFF@school program (My Body is Fit and Fabulous) has been designed specifically to help overweight and obese adolescents control their weight and provides a valuable platform on which to build a broader program that could help all adolescents stay healthy.

A starting point for designing an intervention is simple logistics. What is even possible to change within Malaysian schools? So that’s what brought me to Kuala Lumpur, to visit schools and see for myself how life works for adolescents at school over there. I realised that the biggest difference compared with my school in the UK was the timing. In Malaysia, school starts at 7 am and ends at 1 pm, break time is for 20 minutes between 0930-1030 (depending on which year you are in) and this is the time when the cafeteria is open for hot meals and cold drinks.

The school canteen offers lots of fried and sweet snacks like burgers, sausages, chicken and samosas, not so different to school food I remember. But more traditional meals, made of rice, noodles, eggs, fish or meat with sauce, were also for sale.

Some schools had fruit snacks suggesting it may be possible to alter the range of foods available. There were vats of ice-cold drinks like fruit squash and Milo and iced tea, all sugar-sweetened. Water wasn’t freely accessible but water bottles were sometimes brought in from home.

Touring the rest of the school, I saw that there were plenty of spaces for physical activity, a school gym, hall, basketball courts and a playing field. But the heat was high as was the humidity, I was sweating just standing still! I had no desire to be physically active in those conditions, which made me wonder what the kids thought about that.    

That leads me back to what MyHeart Beat aims to do in the next 18 months. We plan to find out what staff and students think about different options for changing diet and activities – because ultimately it’s the people whose behaviour you are trying to change that know best what will work for them. We’re also aware of some local initiatives by state nutrition divisions starting this year to make improvements to the school food supply e.g. in Perak, parents/teachers are asked to report if the canteen is selling unhealthy food. To find out more about what the adolescents, teachers and Ministry of Education officials think about what can and should change, we’re planning some interviews and focus groups to ask them directly. From this we’ll work out the options that will be most feasible for changing. Then we’ll develop an intervention (set of changes) that we hope will improve diet and physical activity and ultimately cardiovascular and metabolic health. Our approach follows the UK Medical Research Council (MRC) recommendations for designing interventions. We hope that by building on a strong evidence base and crucially talking to the local people, we’ll ensure the intervention we design will be a success.

Towards the end of 2018 we’ll be taking our intervention out to some schools to test it out. This small pilot project is the ultimate aim of all of the different parts of the project and will tell us if the plans we’ve made will work in practice. I’m looking forward to visiting Malaysia again at that stage, and getting some more fabulous hospitality from the MyHeart Beat researchers over there!

To Shooka, Shafina and Fadzrel, Terima Kasih (Thank You) for having me.

 

 

 

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Women Studies Departments in Indian Universities face threat of closure

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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.

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What can children in the care system tell us about their well-being?

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Professor Julie Selwyn is a Professor and Director of the Hadley Centre for Adoption and Foster Care Studies at the School for Policy Studies. Here, she shares the findings from the new report she co-authored, Our Lives, Our Care: Looked after children’s views on their well-being.

There were 70, 440 children in care in England as of 31 March 2016, according to the Department for Education. The majority of children enter care because of parental abuse and neglect and often enter with physical, emotional and behavioural difficulties as a result of traumatic experiences. Every year ‘outcome’ data are collected and published by the Department for Education on children’s educational achievements, offending, mental health, and number of teenage pregnancies.

Children’s experiences not heard across system

Generally, children in care do not achieve the same level of academic success as their peers and are much more likely to have problems with crime, drugs and have poor mental health. Consequently, the care system is often viewed as failing but there is no systematic collection of information on how children feel about their lives in care. Nor do we know whether children in care emphasise the same aspects of their lives as being important to their well-being, as those identified by children in the general population.

This excerpt was taken from the original post in the WhatWorksWellbeing blog. Read the post in full.

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