Nordic networking

Our ESRC funding includes a budget for attending one international and two national conferences.   The goal is to make other researchers and policy-makers aware of our research, but also to get feedback which helps us make it stronger.  We dipped into that budget this May to send Tom Shakespeare to Bergen for the Nordic Network of Disability Research, a gathering of 360 people from 34 countries.   All the keynotes and abstracts can be found online. 

Several colleagues presented research with personal assistants and personal assistants users, including Karen Christensen (Bergen), who is an advisor to the PA Relationships study, and Steve Graby (Leeds) who is looking at the political economy of personal assistance.  In discussion with Finnish colleagues, we discovered how Tom's book Help (2000) had influenced how policy-makers discuss personal assistance in Finland, a lovely example of policy impact.

Our NNDR paper drew on preliminary findings about the emotional aspects of personal assistance, and about how 'emotional work' was required by both the disabled person and the worker, in order to maintain boundaries and negotiate relationships.  It was based on the paper we presented in Bristol, but has evolved further as we analysed our first batch of interview transcripts.   Now we hope to write it up for publication.  Below you can see Tom talking in the conference, and glimpse an overview of what he said.

Meeting experts by experience

A recent speaker at the UEA posed a question: ‘What’s the point doing research if it doesn’t change the world?’. Quite right! I thought. This question led me to think about how we make sure academic research really does affect change (however small) in the real-world. 

As researchers, one of the best things we can do is talk to experts by experience – disabled people who employ PAs, and those working in and around personal assistance. This is why we were delighted to accept an invitation from the West of England Centre for Inclusive Living (WECIL) to talk about our research at a recent conference, which explored the benefits and barriers of direct payments and personal assistance.

This one-day conference brought together people from various backgrounds – PA users, PAs, professionals working in health and social care – to share and discuss their experiences of direct payments and personal assistance. Other speakers included Alex Fox, CEO of Shared Lives (an organisation providing alternatives to home care and care homes for disabled adults), and Lindsay Winterton, Care Act lead for Bristol City Council. 

We gave a 40 minute presentation on the topic of PA relationships, which touched on the issues of emotions, ethics and power, and introduced preliminary data from our first tranche of qualitative interviews. 

Feedback from the audience was positive, with several attendees saying that our research questions and preliminary data really resonated with their experiences of personal assistance. But there were also probing questions: why are we not interviewing ‘informal carers’?  How can we be sure that findings from a qualitative study will be reliable? Answering these questions really helped to crystallise the scope, purpose, and potential impact of our research.

The afternoon workshop (which focused on the complexities of personal assistance, the potential role of statutory bodies, and the development of a ‘PA framework’) saw lively and thought provoking discussion. This session was particularly useful as many of the practical issues identified (the PA interview process, the hard work of becoming an employer, adhering to complex welfare and employment regulations) have often been overlooked within academic literature. In fact, the issues raised in these discussions may well inform the development of our interview topic guides, thus shaping the questions we ask and the data we collect.  

And here we come back to the notion of change in the real-world. Speaking to experts by experience helps us to think about the kinds of questions we ought to ask our research participants, how personal and contextual factors might affect participant’s experiences of personal assistance, and how we can translate our research findings into knowledge and materials that really help to produce more effective and rewarding personal assistance relationships. This is, after all, the change we are committed to making. The input of PA users and PAs is essential to achieving this aim; thank you to everyone we met on the day.

What are a team of sociologists doing investigating emotions?

I am Andrea Stöckl, the co-investigator in the research team, and my area of interest is how emotions shape, form, and sometimes rule our lives.  This will be a key theme in our research.

Emotions not only shape our private lives, but they also inform policy makers, politicians, health care workers, and indeed personal assistants and disabled people. We usually think of research on emotions as being part of psychology and we tend to locate emotions in the individual.  We think that a person feels love or hate or anger towards another and this is certainly true. But while a psychologist would study how these emotions develop in a person, sociologists look at what these emotions do to people: how they bring people together, how they bring people apart, how they inform politics and shape the institutions we live in. Emotions makes us what we are as human beings: without them, we would not be able to survive as babies, we would not grow into adulthood, and we certainly would not know how to relate to each other in households and workplaces, build a society and a working democracy.

We sociologists also interested in how emotions develop between individuals and groups in a specific time and place. This means that even though we consider emotions to be universal, we think that, for instance, people have expressed love differently in bygone historical times. Another interesting example  is anger: how do we publicly allow for the expression of anger? Do women and men feel anger differently? Do they express anger differently? Is it true that men are allowed to express their anger whereas women can only be passive-aggressive? Can we understand anger better if we see it as an act to restore a violated sense of dignity rather than an inbuilt character trait of a person?

Similarly, sociologists tend to argue that to understand the feeling of shame and embarrassment, we need to look at who does the shaming, and who is shamed, not at how shame feels, which is what a psychologist might ask.  Where are the boundaries?   What is the role of shame in the relationship between two people?

In this project we will be exploring how different emotions play out in the personal assistance relationship: emotions like affection, pride, respect, dignity, resentment, anger.   How do people express those emotions?  How do people keep those emotions hidden?  How do they help personal assistance go well, or go wrong?

While emotions are very important in this project, they are only one aspect of the personal assistance relationship.  We are also studying ethics and power: questions about who is in charge, and what obligations people feel, and what the formal and informal rules are within the relationship.   We’ll write more about that in a future post.

 

 

Research is underway!

It's always exciting when a research project gets beyond planning stage, and into practical data collection.  This month, we  have begun to interview our first batch of disabled people who employ personal assistants.  We are starting with up to 15 people who receive funding through the Independent Living Fund, and as well as exploring their PA relationships, we are also asking about their funding situation, and their thoughts about the future.  The first interview took a mammoth four hours!  We are so grateful to all the disabled people who are willing to share their lives with  us.  Tom Porter has conducted three interviews so far, which means 27 more disabled participants to go, as well as 30 personal assistants.  Already, we are fascinated by our data, and look forward to reporting further.

We've also featured in the media, specifically Tom Shakespeare has contributed to The Download, Disability Now's legendary podcast.  Meanwhile, Andrea Stockl has been talking about the project at a symposium in Vienna, so the word is spreading far and wide.

Charlie and Hayley

Sometimes a picture is worth a thousand words.  Charlie is a man with learning difficulties who I have known for more than 25 years.  His mother has campaigned for him to have personal assistance and to live in his own home, supported by several workers during the week.  She recently sent us this picture of Charlie and his worker Hayley, which we think captures so much of what we are interested in during this research project: relationship, emotion and empowerment.

The end of an era?

The Independent Living Fund (ILF) is set to close on the 30^th June. For over 25 years, the ILF has enabled disabled people to realise human and civil rights which many non-disabled people take for granted. Over 19,000 disabled people receive ILF payments (December 2014 figures). For these people, the closure of the ILF represents a seismic shift in the way their entitlements are organised: support packages are likely to change, new regulations concerning the use of direct payments will come into force, and the meaning and practice of personal assistance will evolve.

The ILF budget is to be transferred to local authorities, however only a small number of local authorities plan to ring fence this budget for existing ILF recipients (or even for adult social care).  There is current considerable pressure on adult social care, due to the ongoing programme of public expenditure cuts. There are concerns about the implications of the ILF transition for independent living.

We believe it is important to understand the experiences of ILF recipients as they transfer to local authority funding.  By adjusting our data collection timetable slightly, we can use our first cohort of qualitative interviews to do just that. As well as our PA relationships themes, we will also investigate whether or not local authorities are supporting ILF recipients during their transfer; interviews will explore ILF recipient’s hopes and fears regarding self-directed independent living; we will also document how local authority funding and regulation shape personal assistance.   

Once this initial set of 15 interviews has been completed, we will disseminate key findings to academic and policy professionals, members of the disabled community, and those working in personal assistance. In June, we will hold a briefing in Westminster for Parliamentarians and civil servants to highlight our initial findings about the impact of ILF closure, and we will also disseminate to the media. 

As a team of disabled and non-disabled researchers we are committed to the realisation of disability rights – such as Article 19 of the UN Convention on the Rights of Persons with Disabilities, the right to live independently and be included in the community. We are also committed to the principle of objective inquiry.  The phasing out of the ILF has generated huge concern in the disability community. Yet the decision to close the Fund – and subsequent legal challenges – have received scant attention in the mainstream media. We will work hard to understand the consequences of the closure, and to share this understanding widely.

Ethics and personal assistance

A few days ago, we received the good news that our project had been cleared by the UEA Faculty of Medicine and Health Ethics Review Committee: we are just awaiting the official notification.  As with all research studies, we had to explain what we were going to do, how we were going to ensure informed consent, and how we were going to protect our research participants from harm.

We want to involve people with learning difficulties in this study, so it is particularly important that we ensure our consent procedures are adequate.  We are only going to include people who are capable of giving consent.  We have an Easy Read version of our project information sheet.  We will also read the information to people, to ensure they understand it.  Above all, we want to take the time to ensure that people understand the project, and are happy to take part.   We will not disclose who has taken part or what they have said.   Everything they report will be anonymized before we analyse it and write it up.   The only exception to this absolute confidentiality is where people report abuse: in line with general practice, we would have an obligation to report abuse to the authorities, but we would only do so after discussion with the person involved, and we would preferably support them to report the abuse themselves.

There are several thousand people who receive direct payments in Norfolk, plus those who are supported by Independent Living Alternatives in London, our other recruitment site.  We only need to talk to 30 disabled people and 30 personal assistants, which will be a tiny proportion of the total community.  However, we felt it was very important for ensuring confidentiality and trust that we did not speak to personal assistants who were working for disabled people in the study.  We felt that neither disabled people nor personal assistants would want us asking other people about them.  So we are going to recruit the two groups separately, in different geographical areas.  That way, we hope that people will be open and candid about their experiences.

Of course, the really interesting ethical issues are those that arise in the personal assistance relationship itself.  What roles people take, how people talk to each other, what obligations they feel, these are some of the fascinating questions we hope to explore as the study continues, and in two years time we will be reporting back what we have found about the ethics of personal assistance.

We welcome your feedback, so if you have ideas, suggestions or personal experiences to share, we'd be glad to have your emails: tom.shakespeare@uea.ac.uk or tom.porter@uea.ac.uk will find us.