Nick Ewbank – Cultural Value and Social Capital: Investigating Social, Health and Wellbeing Impacts in Three Coastal Towns Undergoing Culture-led Regeneration

For our contribution to the Cultural Value project, the Sidney De Haan Research Centre for Arts and Health and cultural regeneration consultancy Nick Ewbank Associates carried out research in three coastal towns where there has been significant investment in culture-led regeneration in recent years, focusing on the impacts of Turner Contemporary in Margate, the Creative Foundation in Folkestone and the De La Warr Pavilion in Bexhill-on-Sea.

We adopted a mixed-methods participatory action research approach, using mind-mapping, vox pops and focus group discussions with around 300 public participants. We also carried our sixteen in-depth interviews with politicians, cultural leaders, academics, funders and public health experts.

The resulting report, ‘Cultural Value and Social Capital’, found that, despite an intuitive feeling that there is a “connection between cultural activity and feeling good”, health and wellbeing is not currently prioritised as a driver of either programming or outcomes. 

The three organisations were found to make a “significant, but at present largely undefined, contribution to social capital and to delivering health and wellbeing in their respective communities”, but outside the specialist field of arts in health practice “this important aspect of cultural value is currently hidden”. 

Des Crilley, Chair of Kent County Council’s Strategic Group for Arts in Kent, is quoted in the report as saying: “I don’t think arts and cultural organisations are able to define the impact they are able to make. They don’t trace it and make it visible. It drives me mad! They change someone’s life and they don’t even realise.”

 

Report Lauch, 16 July 2014. Panel members (Left to Right) Prof Stephen Clift, Helen Goodman MP, Deborah Bull, Sir Peter Bazalgette

Photo Stephanie Mills

Photo Stephanie Mills

We launched the report at a reception at the House of Commons on 16 July 2014. This event included a panel discussion with Prof Stephen Clift (Principal Investigator), Deborah Bull (Culture at King’s, Warwick Commission and AHRC Board), Sir Peter Bazalgette (Chair of Arts Council England) and Helen Goodman MP (Shadow Culture Minister). During the debate Sir Peter said “Fifty percent of local authorities are considering deploying health budget in the arts … it’s about the intrinsic value of the arts first, but to blind yourself to what the [economic and health] benefits are is ludicrous”.

 

Both Sir Peter and Helen Goodman MP, used the event to call for the health and social benefits of the arts to be systematised, with appropriate funding and measurement tools put in place.

Deborah Bull called for a “progressive research agenda” able to take the long view and not driven by the calls of different “flip-flopping” governments. She added that this will require the higher education sector and the research community to work very closely with the cultural sector.

The report proposes the introduction of guidelines with models of best practice, an idea supported by the three organisations involved in the project, who also said they would “welcome the introduction of simple-to-use evaluation tools that might shed light on levels of wellbeing generated by their everyday activities”. The report also suggests that cultural organisations should do more research into barriers to public engagement with their work, and give more consideration to programming and commissions aimed at “addressing specific health and social issues”.

Both the report and a short film of the House of Commons launch event can be viewed at www.canterbury.ac.uk/Research/Centres/SDHR/CentreNews/AHRC-Report-published.aspx

Or at www.nickewbank.co.uk

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Martin Wright: Cultural Value of Accessible Theatre

“For the first time I was able to attend a show and understand every word. Prior to that I would just sit there and understand nothing. You saved my social life.”

(Respondent, STAGETEXT survey)

Many people in society cannot benefit from the full value of cultural events if those events are not made available for them to access.

While we tend to think of barriers to access as being geographical (the production I wish to see isn’t touring to my part of the country) or financial (I’d love to see that production if I could afford the ticket price), people who have sensory impairments – either because of disability or ageing – may additionally experience barriers based on lack of support for their access needs. People who have difficulty hearing a theatre production may need captions. People who are deaf may need sign interpretation. People who have vision impairments may need audio description.

Responding to these needs, and prompted by legislation such as the Equality Act 2010, many cultural institutions have shown interest in making their cultural events accessible to the widest possible audience by making them inclusive.

The two organisations at the forefront of providing captioning and audio description services to theatres and live events in the UK to help them achieve this are STAGETEXT (http://www.stagetext.org) and VocalEyes (http://www.vocaleyes.co.uk).

As part of the AHRC Cultural Value Project, Prof Jonathan Hassell, Prof Martin Wright, and Owen Smith of London Metropolitan University partnered with STAGETEXT and Vocaleyes to examine the cultural value of accessible theatre to:

  • theatres that choose to schedule captioned or audio-described performances, through interviews with the National Theatre, Ambassador Theatre Group, The New Wolsey Theatre, and Society of London Theatre; and
  • the audiences to whom those performances are aimed, through focus groups and surveys of those audiences

Investigating the economic value of accessible performances to theatres, we found that, while the 2008 SOLT Access London Theatre project identified large potential audiences for accessible performances in the UK, and follow-up projects like See-A-Voice have since trained theatres in developing these audiences, the actual audience numbers attending are lower than anticipated. This doesn’t negate the need to schedule accessible performances, due to the remaining legal and ethical business cases. However, the current fragility in the economic business case constrains producers’ desire to hold accessible performances.

We identified many barriers to audiences booking for performances, and the possibility of a ‘Catch-22’: that return on investment requires enough accessible performances to be scheduled to enable disabled people to develop and maintain a ‘theatre habit’; but until enough develop this ‘habit’ accessible performances may actually lose the theatre money. In the current economic climate, without evidence that we are nearing this ‘tipping point’, progress towards it is stalling, as theatres ‘lose their nerve’ and fall back to levels of accessible performance provision that reflect a wish to prevent legal risk to the theatre rather than to develop these audiences.

This is disappointing because our in-depth investigation into the wider cultural value of accessible theatre found ample evidence that audiences who attend accessible theatre performances benefit greatly from many of AHRC’s components of cultural value. However, negative aspects of cultural value are also clear. AHRC’s ‘community dynamics’ component mentions urban demographics that can be included or excluded from the community participating in the nation’s cultural life. Our research found that Deaf, deafened, hard of hearing, blind and partially sighted people are in danger of being similarly disenfranchised if their needs are not considered. Theatres that don’t provide accessible performances have an adverse effect on community cohesion as disabled audiences feel excluded from seeing shows other people are coming together around.

So we believe that it is important that ‘inclusion’ is recognised as a component in AHRC’s cultural value model. Without inclusion, disabled or older audiences can’t access the positive benefits of any of the rest of the components; and will only get the negative aspects of cultural value. Which arguably leaves them worse-off than if theatre didn’t exist at all.

A video summary of our findings is available from: http://www.gamelabuk.com/?page_id=723

Back in 2006, STAGETEXT and VocalEye’s See a Voice project achieved a step-change in the level of provision of captioned and audio-described theatre in the UK. This established a model that, through current levels of funding, is enabling many deaf, deafened, hard of hearing, blind and partially sighted people to enjoy much of the cultural value of UK theatre.

However, pressures on the current model, from some frustrated users and potential users, theatres and producers, together with the potential of new technological and organisation interventions that our study identified might shift current ‘immovable barriers’, suggest that it may be time to search for ways to achieve a step-change again.

After all, the prize certainly seems worth it:

 “… the opportunity to return to a place that I love and re-engage with theatre performances has returned to me part of my life I thought was lost forever.”

(Survey Respondent, The Cultural Value of Accessible Theatre)

Blog by Professor Jonathan Hassell 

Hannah Zeilig: The arts in dementia care – A Critical Review of cultural and arts practices in dementia care in the UK

Mark Making: Exploring the value of the arts for people living with a dementia

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‘Dementia’ is a condition or syndrome that is elusive and defies any facile definition; it has become a fear-laden term that encapsulates society’s worst terrors. Despite the general lack of consensus about what dementia ‘is’ in neurological terms, there is agreement that dementia is a long-term medical disability. To this end, there are regular reports in the media and elsewhere concerning the prevalence of the condition both in the UK and globally. The recent G8 summit highlighted the importance of countries working together to find a cure for the condition.

However, at the present time finding a cure or even effective drug treatments is proving elusive. In the absence of appropriate pharmacological interventions the social conditions in which those with a dementia live also need urgent attention. Pioneering work by researchers and practitioners has contributed to the understanding that although Alzheimer’s and other dementias may be incurable at present, they are conditions that can be treated and that treatment always includes more than drugs.

This is the socio-political context that has led to a burgeoning of arts and cultural initiatives for people living with a dementia. These initiatives are diverse and include (to name a few) music and drama groups, creative writing programmes, dance groups, painting classes and visits to art galleries. There are also a number of organisations that have emerged in the past decade that have a specific focus on using the arts with this population. These organisations and initiatives reflect a prevalent assumption that the arts and culture play an intrinsically positive role in the health and wellbeing of people living with a dementia.

However, there has been very little critical evaluation or review of these initiatives and interventions. Indeed, the evidence base relating to the real and measurable benefits from cultural activities for people with a dementia remains disjointed. Similarly, there has been little work exploring the views of people living with a dementia concerning their perceptions of the value of arts and culturally based activities.

Mark Making aims to extend and strengthen the knowledge base concerning the efficacy of arts-based approaches for people living with a dementia. The question guiding the project is:

            ‘What is the value of arts and culture for people living with a dementia?’

This question is being explored using a range of methods, including a comprehensive literature review.

In addition, the project team has spent time with the artists and participants of three arts based projects:

  •          Visual to Vocal at Dulwich Picture Gallery
  •          Music for Thought run by Westminster Arts
  •          Verd-de-gris in Hebden Bridge.

These projects all used a multiplicity of arts activities including visual art, art making, music making and poetry.  The two London based projects were led by professional artists (from the Royal Academy of Music and English Touring Opera) and took place in an art gallery and Wigmore concert hall. Verd-de-gris in Hebden Bridge is a smaller scale project that takes place in a town hall. The projects are representative of the varied range and scope of participative arts initiatives for those with a dementia; some of which take place in rural locations on minimal budgets and others (the majority) that are located in London or other major urban centres. In addition, although the London projects were better resourced, securing funds for future projects was an abiding preoccupation for all the groups.

A duet in Dulwich Picture Gallery (part of the Visual to Vocal song cycle)

A duet in Dulwich Picture Gallery (part of the Visual to Vocal song cycle)

Despite differences in funding and resources all of the groups were characterised by the energy and enthusiasm of the leading artists and their active engagement with participants.  As one participant exclaimed during a group ‘Enjoy the day’; she certainly was.  The importance of collaborating with participants living with a dementia to ascertain their views and opinions is a preoccupation for the Mark Making project team. However, pragmatic difficulties have been encountered. These are related to the teams’ problems with developing trusting relationships with individuals in very short spaces of time.  Despite these issues, several in-depth interviews have been carried out and a number of questionnaires have been completed.

Mark Making has used novel methods. A graphic artist helped create a comic explaining the aims of the project to participants living with a dementia. This was extremely well received in one project (where copies were all taken by participants and artists) but the investigators were asked not to distribute it in two projects due to sensitivities about using the term ‘dementia’.  The taboo and stigma associated with the word dementia (even within arts projects designed specifically for those living with a dementia) has piqued the curiosity of the project team.  Above all, it was unclear who felt uncomfortable with the word (carers? project leaders? artists?); as in conversation with the investigators several participants referred loudly and openly to their diagnosis.

Mark Making is ongoing – the final report will be complete by June. It is therefore not yet clear what the recommendations will be. However, the team expects to contribute to the wider cultural value project in several ways:

  •         By capturing and questioning tacit assumptions about the inherent value of arts and culture for people living with a dementia.
  •          By advancing the ways in which we think about and discuss the value of the arts and culture in the UK both generally and specifically in relation to their role for people living with a dementia.
  •          The literature review and study of the projects is beginning to synthesise the disjointed evidence base regarding the use of arts and culture for those living with a dementia.

Please read more about our work here:

http://mmaking.co.uk

Miriam Bernard: Ages and Stages

‘Cultural value can mean what you want it to mean and can mean nothing’

‘Cultural value? You can’t put a price on it, but you can buy a ticket for it although you don’t know what you’ll get!’

These are just two very preliminary thoughts expressed by a couple of participants in our ‘Ages and Stages’ project. We are delighted to have two awards under the Cultural Value Project: one exploring the cultural value of older people’s experiences of theatre making, and the other, a linked critical review on ‘Ageing, Drama and Creativity’. Both have been inspired by the continuing collaboration between researchers at Keele University and practitioners at the New Vic Theatre, Newcastle-under-Lyme. Their roots stretch back to 2004/5 when, with local funding, we mounted a small project which brought older people together with members of the New Vic’s Youth Theatre to explore what life was like for both groups. The resulting intergenerational performance piece – ‘Stages’ – was performed at two conferences and, ever since then, we had been looking for a suitable opportunity to do further work together.

However, it wasn’t until we received funding in 2009 under the national cross-council New Dynamics of Ageing programme (see: www.newdynamics.group.shef.ac.uk/), that we were able to realise this opportunity. Between October 2009 and July 2012, our interdisciplinary team explored historical representations of ageing within the Vic’s well known social documentaries and interviewed 95 older people who had been involved with the theatre as volunteers, actors and employees, audience members, and sources for the documentaries. That initial research was drawn together to create a new hour-long documentary drama called Our Age, Our Stage and the associated Ages and Stages Exhibition. This was followed by a year of knowledge translation activities in which we were able to establish the Ages & Stages Company; devise and tour a new interactive forum theatre piece: Happy Returns; develop, deliver and evaluate a pilot inter-professional training course; and scope out, with a range of partners, the potential for a Creative Age Festival in Stoke-on-Trent and North Staffordshire.

But what has all of this been like for the older people who have participated, since 2009, in what is now the Ages and Stages Company? What do they make of their experiences of theatre making – especially given the fact that, for many of them, this was the first time in their lives they had ever been on stage? And what meaning, if any, does that phrase ‘cultural value’ have for them? This is what our small ‘case study’ of ‘Ages and Stages’ is trying to uncover. We have also been going back to our original interviews with Company members and – this is the new and exciting bit – ‘training’ and supporting them to interview each other about their experiences. By the time you read this, Company members – who by the way are aged from their sixties to their mid-nineties – will have completed a series of recorded research discussions exploring the impact ‘Ages and Stages’ has had on themselves, and on others (e.g. their families; friends; the younger people they have performed with). In the New Year, the Company will be back together to co-evaluate the research process with us; to look at the transcribed interviews and begin to select and agree the issues to be developed into a new piece – or pieces – designed to show, through live performance, the cultural value of what they have been involved in.

We are setting these explorations in the wider context of a critical review which will examine both the published and ‘grey’ literature in this area. What, we are asking, does the research and literature tell us about the cultural value older people derive from their involvement with theatre in general and theatre-making in particular? What conceptual and theoretical frameworks, if any, have been used to research older people’s experiences of theatre/theatre-making? And, what methodologies and research designs have been employed in existing studies?

We are approaching both the review and the empirical work from our roots in critical gerontology and in participatory drama-based practice, and from a shared commitment to what colleagues Meredith Minkler and Martha Holstein in the United States have termed ‘passionate scholarship’. This provides an important corrective to the negative and ageist assumptions which pervade our society and which, more often than not, frame older people as a ‘problem to be solved’ rather than recognising, acknowledging and building on their skills, abilities, contributions and life experiences. Our ongoing work is, we hope, a small contribution to challenging stereotypical views and existing deficit models of old age and the ageing process. We will be showcasing the results at a workshop/symposium at the New Vic on May 9th 2014 as a stimulus to further discussions with an invited audience of older people, practitioners, policy makers and academic colleagues. If you’d like to find out more about what we have done so far, you can go to our website (www.keele.ac.uk/agesandstages/) and/or we can send you packs which include DVDs of our productions to date. If you’d like to be put on the invitation list for the symposium, please contact our Administrator Tracey Harrison on t.l.harrison@keele.ac.uk

 

Philip Davis: Assessing the intrinsic value, and health and well-being benefits, for individual and community, of The Reader Organisation’s Volunteer Reader Scheme

Some of the results from the Built Environment Group

Some of the results from the Built Environment Group

Most Mondays, three, four or five of us sit together in front of a computer screen. We are watching video-recordings of reading groups. They are not what conventionally goes under the tile of reading groups when a group of people, mainly women, mainly middle class, decide upon a novel they are going to read in advance separately (usually a contemporary novel), and then meet to discuss it afterwards in one of the group-members’ homes. The groups we are watching are established on a quite different model. They are set up by The Reader Organization under its scheme of Get Into Reading. That means that the works – poems, short stories, even novels over a period of months – are read aloud in the group, live and shared, with time and space for re-reading and comment. The project involves a wide range of participants in terms of age and background, including people who have suffered recently from some sort of trouble, sometimes described and even treated in terms of ‘mental health issues’. Our task is to see the value of the shared reading model, compared with other forms of group activity (in this case, in a cross-over design, a group discussing the built environment with particular relation to The Reader Organization’s re-opening of Calderstones Mansion in Liverpool as a Centre of Reading and Well-Being).

We have done audio recordings before, with transcripts, but never video-recordings as now. It is impressive that the participants assented to it, and it is extraordinary to watch these groups – making little collaborative communities – in live action around a text of deep human presence. The teams of researchers watch them reading from John Clare’s poem of mental distress, ‘I am’, written in the mid 1840s from inside a lunatic asylum– ‘I am: but what I am none knows or cares./My friends forsake me like a memory lost /. . . And yet I am . . .’ Then the final stanza:

I long for scenes where man has never trod;
A place where woman never smil’d or wept;
There to abide with my creator, God,
And sleep as I in childhood sweetly slept:
Untroubling and untroubled where I lie;
The grass below–above the vaulted sky.

After a while – after people have wondered how desirable or desperate this state is, and how close to a sort of death or paradise – one member says, ‘I don’t know what it did, it did something in me.’ The linguist in our research team has got interested in how many times, over many different sessions, the participants refer to literature directly doing something, as if it were both an active and (for all its language) unnaming presence, instead of the usual professionalized definitions, medicalized diagnoses, and second-hand paraphrase of ‘themes’. She is also interested in the regular but unpredictable shift of pronouns – I, me, it, he, we – in course of group discussion, across text, individual, group. But this time our linguist notes the phrase: ‘It did something in me – not to me’. She is reading the participants as carefully as they are reading poetry, working out (later with the use of linguistic markers and software analysis) how much the vocabulary and syntax becomes inflected by the poetry itself – how much the group-members are themselves in their way becoming a little more like poets.

Meanwhile one group member keeps coming back to why ‘Untroubling’ comes ahead of ‘untroubled’ in the poem. She hints – just a little – about causing trouble involuntarily in her own family through her own troubled state. That last stanza, says one group member, ‘is not paradise, just ordinary life without its pain, illness . . .’

5.1

So it is that, for all our micro analysis of the process, there is also, always, this larger personal level of meaning. Often, someone will quietly say something like the usually slangy ‘I’ve been there’ – but here as though the poem were a real mental site or place in the human world. Personal stories come out, in fragments – about a lost beloved in a mental institution, or one’s own sense of dereliction, or an aunt asking her nephew (as one of the men in the group recalls) ‘Am I dying?’ We do not know for sure yet whether to describe these accounts as ‘relevant’ to the text or not, as part of the intrinsic value of the reading group or only (as a purist might say) of ‘instrumental’ value in relieving or reliving past memories. But we do know that we do not see or hear such responses in the other group where they are (still imaginatively) considering the built environment.

We also know that we will not be coming up with a clear abstract dividing line between relevant and irrelevant, or even perhaps between intrinsic and instrumental. The two may be messily closer than we prefer. We are thinking of other terms. For instance. The built environment group-discussion is manifestly proceeding on the basis of everyday relevance: it is clear when someone crosses the invisible line and is (as we say in Liverpool) going off on one. But the reading groups works within a sort of created circle of resonance, going to and from the text at its centre – until or unless the bubble (as it were) is burst.

Soon, as another new move in the research, we shall be showing excerpts from this footage to the participants themselves, to see what they make of what happened. As the phrase goes, we are working on it, and it is – this watching of people themselves working together in intimate social collaboration – a privilege. The reflective individual and the engaged citizen: those AHRC things are there together and alive in this setting.

Michael Eades: Bloomsbury Festival in a Box – Engaging Socially Isolated People with Dementia

Dementia has been in the news in a big way over the past week. Tuesday the 11th of December saw the first ever G8 Dementia Summit opening in London, with a headline grabbing promise from David Cameron to double funding for dementia research by 2025. This follows similar promises of urgent action on dementia put forward last year in the Prime Minister’s Challenge on Dementia, which in fact promises (rather more generously) to ‘[m]ore than double […] overall funding for dementia research to over 66m by 2015’.

Dementia, its treatment, prevention, and (one day, we might hope) ‘cure’, has shot up the national agenda over the last few years. In the process, a discourse has developed around the topic which—as is so often the case with discussions of culture in the public sphere—has drawn upon largely economic measures of value. A language of costs, budgets, investments and returns has shaped the media headlines over the past week, matching the immensity of the social ‘problem’ of dementia with talk of eye-wateringly (and eye-catchingly) huge sums of money.

As part of the Cultural Value Project, our research has a stake in these discourses. From July onwards we have been working on an initiative entitled ‘Bloomsbury Festival in a Box: engaging socially isolated people with dementia’. On a basic level, this project aims to take a peripatetic version of the Bloomsbury Festival—a community focussed arts festival in the heart of London—out to local residents unable to leave their homes and engage with it directly. Specifically, we have been working closely with Age UK Camden’s Dementia Befriending Service, and with the Faculty of Brain Sciences at University College London, to develop and analyse a cultural outreach for those living with dementia.

The idea here is to offer a chance for such people to engage not just in the reception, but in the collaborative creation of cultural experience. Working with Age UK Camden, and with a pool of Bloomsbury Festival artists, we have initiated a programme of weekly visits that take a number of specially designed Festival Boxes out to people’s homes. Each weekly visit comprises a short cultural activity designed to prompt reminiscence—singing, painting, ceramics work, a poetry recital or writing workshop—followed by a short narrative interview reflecting on the experience. Visits are audio-recorded, and a quantitative single-question happiness measure is also taken at the beginning and close of each session. All artists and researchers also keep research journals reflecting on their experience.

Over the course of the project, each of these Festival Boxes has developed into a unique cultural experience. They have become a personalised ‘archive of engagement’ for each participant, and this has allowed us to respond sensitively to the participants’ needs, and to focus on what Tom Kitwood (1997) has famously described as ‘the personhood of people with dementia’. The Festival in a Box project has therefore developed opportunities for reminiscence and narrative storytelling, but also offered an opportunity for analysing the core value of cultural experience itself. By working with participants who, as a result of their memory loss, tend to experience cultural engagement ‘in the moment’, within a disordered narrative present, we have been able to gather valuable material on the affective experience of culture amongst a traditionally ‘hard to reach’ population.

The project is now moving towards its concluding stages, in which the transcribed data gathered from our visits will be analysed via a series of close textual readings across our research team. As well as offering valuable research data, this project will also provide an opportunity for reflecting upon the ‘value’ of socially isolated people within a ‘cultural’ context. It will provide a means through which—we hope—to reintegrate the stories of those living with dementia into the broader narrative of the Bloomsbury Festival, of Camden, and of London itself.

Reflections on the course of the research so far can be found on the dedicated project blog: http://blogs.sas.ac.uk/category/bloomsbury-festival-in-a-box/

Cath Lambert: The value of live art: experience, politics and affect

The Value of Live Art?

At mac birmingham, a popular arts complex just south of Birmingham City Centre, recent visitors could not help but see at least some of artist Brian Lobel’s public exhibition Fun with Cancer Patients (exhibited 12 September – 6 October as part of Fierce Festival). The title, bold in black on white, was visible from the busy café, and evoked curiosity, concern, disapproval and a whole host of other different emotions and responses that led many people to explore the exhibition in more depth. The exhibition documented six creative ‘actions’ based on the ideas and experiences of a group of teenaged cancer patients who have been working with Brian Lobel over a number of months. My research, ‘The Value of Live Art: Experience, Politics and Affect’ has been embedded in the Fun with Cancer Patients art project in order to try to access, explore and understand the cultural, political, social and emotional work live art can do. The value of the artistic experiences and outputs to the teenagers and their families, to medical professionals and support workers, as well as to a wider public audience, is subject to critical examination using a mixed and at times experimental bag of ethnographic and ‘live’ methods (see Back and Puwar 2012). In order to research audience’s experiences of the exhibition, this took the form of a ‘live art hub’ alongside the installation space. From this physical space we observed, chatted, listened, carried out interviews, ran workshops, and gathered responses articulated in writing, speech, gesture, image or a combination of forms. The hub was a ‘space of affect’ where long conversations and brief, speechless encounters alike were articulated and documented as sociological research.

In the introductory text for the exhibition Brian Lobel writes, ‘Instead of asking for your sympathy or pity, Fun with Cancer Patients asks for your intellectual and critical engagement around cancer’. The documentation challenges audiences to listen, watch, read or feel what the young cancer patients themselves have to communicate about their experiences of being stared at, becoming disabled, having chemo, having a hickman line hanging from their body, losing hair, losing friends, making friends, being asked endless questions, eating hospital food, facing death, having fun. These opinions and experiences may or may not resonate with visitors, many of whom have cancer stories of their own. The research has involved a good deal of story-telling and a lot of listening. I have felt keenly that sociology is, as Les Back (2007) puts it, ‘ the art of listening’. One of my hopes for the research hub is that the data it has generated will acknowledge and amplify the ‘intellectual and critical engagement around cancer’ that Brian called for whilst also perhaps helping us to understand some of the challenges around such engagements.

Sociologists do not often attend to live art, but live art is becoming more mainstream, more talked about, and increasingly likely to touch the lives of ‘ordinary’ people, even those who do not seek it out. I have a hunch that there may be something special about some live art practices, making them incredibly valuable as a mechanism for social and political change. Of course the materials of live art are simply the materials of life: bodies, emotions, objects, social and material relations, conversations, stories, memories and so on. What may put live art in a powerful position is its ability to generate aesthetic experiences from these materials, to re/order them in such a way as to create what Jacques Rancière (2004) refers to as a ‘redistribution of the sensible’, shifting the usual ordering of the sensory world we inhabit so that we may see, hear, feel, acknowledge and understand different things, and that different people and their knowledges can in turn be seen, heard, acknowledged and understood.

Claire Pajaczkowska: Compassion By Design

Tiles for interior architectural surfaces made from recycled high density polymers by people living with dementia in AHRC participatory design workshops. Credit: Julie Behseta.

Tiles for interior architectural surfaces made from recycled high density polymers by people living with dementia in AHRC participatory design workshops. Credit: Julie Behseta.

How can making art and design create better relationships inside institutions?

This research tests the idea that making art is more valuable than owning or appreciating art.

Edna (96) lives in a residential care home in Essex, with a hundred other residents and a dozen care workers. Each week she opts to join a group of residents who want to gather around the tables in the lounge in order to stitch, knit, talk and listen. Staff are welcome, if they can find time from the tasks that need to be completed. Families and visitors can join in too. Edna, like most of the residents and staff here, has never been to an art gallery or museum, but is curious to know what it means when we describe our workshops as making art and co-design. We bring offcuts and swatches of fabrics given us by manufacturers, shops and the municipal recycling centre. Families bring in materials that are familiar and personal. Individuals find their pieces of work from previous weeks and continue. Stitching seems to bring back memories. Garments that mother made are remembered and with this comes memories of childhood playtime toys, beds of the family kitchen, of setting up home in married life, of working in textiles, buying fabric at the haberdashery, knitting socks on four needles, Make Do and Mend. When we bring in catalogues of textile artists, like Louise Bourgeois, Barbara Hepworth, Tracy Emin, Grayson Perry – Outsider Art residents laugh. They call this the Workhouse and the Cheeky Girls. We show them the tiles encasing their work, made from recycled plastics from the kitchen, which make the square tiles that can be used to resurface the walls of the corridors and bathrooms in the Home. A renewed sense of purpose settles over the group’s weekly gathering as the sense of industry is part of the pleasures of the handiwork.

The tabletops are covered with pieces of cloth, threads, yarns, buttons, images, and each participant chooses the colours and materials they will work, sew, knit, fray, bind, twist, crochet , glue or stitch.

Each week brings new memories and makes links back to previous gatherings. The sense of the hands holding the materials as all work together is a bond more powerful than holding hands. The loose collectivity of individual collaboration exerts a strong gravitational pull and soon people come over to watch, to comment and to share thoughts. The quality of concentration as each pursues their own piece of work is a vivid and vibrant note of tensile strength.

How can this be recorded, noted, choreographed, documented? How then can it be evaluated? The value of this process is not only in the attention that it deflects from calling out to the doctor, nurse, care worker for something else. The value is in the quality of the attention intrinsic to this work, which enriches the moment, the day and the week. It is a culture of Insider Art.

We want to find ways of showing the value of this culture in creating a quality of attention that links our inner selves to the shared space of society. We think this quality of attention may help repair the ‘compassion deficit’ that the Francis Report noticed in the institutional care of the old and vulnerable.