People with profound and multiple learning disabilities (PMLD) are some of the most marginalised in society and are perceived to lack agency. This paper contests such a narrative, presenting findings from an innovative project in Scotland, UK, exploring the impact of artists working collaboratively with people with PMLD and their formal carers. Art is conceived as a social practice, a process, an embodied aesthetic and sensory experience that takes place between individuals. Theoretically, the paper adopts an original approach, combining crip theory, the capability approach and social pedagogy to re-imagine and re-position people with PMLD. The year-long qualitative study used data from reflective diaries (n = 111) and semi-structured interviews (n = 9) with artists, carers and management of a day centre. An Interpretative Phenomenological Analysis of these shared experiences was used. The results reveal an unsettling of prevailing norms and creative ways of doing and experiencing social care that is relational.
This paper challenges and contests the prevailing positioning of people with profound and multiple learning disabilities (PMLD) and of social care practices that construct people with disabilities, and other marginalised groups, as passive and non-communicative. Through the interpretative lens of artists and social care workers, we draw on innovative social care practice at a day centre in Scotland, UK, where artists are working collaboratively with people with PMLD and their paid carers. This radical new approach is a critique of the interventionist-bent of ‘caring for’ people with disabilities in day centres (Douglas, Rice & Kelly 2018). Social care practice has for too long been orientated towards ableist constructs of achieving outcomes of linear development (Löfgren-Mårtenson 2013; McRuer 2006) and privileged normative, ableist time and space, which has been a barrier to people with disabilities and their carers fully engaging with each other. The paper presents ways to re-imagine and re-define social care—alternative ways of doing and experiencing social care—which was achieved by listening to the narratives of artists and carers, practitioners who were invested in the lives of people with PMLD. Whilst recognising that the paper does not include the perspectives of people with PMLD, we acknowledge that integrating their voices into research remains an area for future development.
Theoretically this work offers original thinking using crip theory, along with the capability approach and social pedagogy, to frame understanding of the creative work of artists in social care practice. The act of cripping is replacing passivity and the monotony of ‘normal’ care practice with a ‘new normal’ (Ginsburg & Rapp 2017): social care that stimulates through aesthetic and sensory experiences, which are enjoyable, empowering and inherently motivating. The performativity of flexible crip time (Kafer 2013) is explored through temporal re-imagining, the slowing down and stretching of time—of being in the moment—as a method to enter the world of people with PMLD. A responsive and innovative use of time is leading to meaningful, symbiotic and inter-dependent relationships with one of the most marginalised groups in society. Drawing on social pedagogy (Eichsteller & Holtoff 2012; Hamalainen 2012) and a pedagogy of care (Douglas, Rice & Kelly 2018), reciprocal learning relationships are introduced as a conduit to create spaces to re-envision alternative futures in the lives of people with PMLD. Reciprocal learning relationships are fundamental to dialogue and to making visible the agency, capabilities and identities of people with PMLD at an individual, personal level.
The genesis of this work emerges from conceiving of art not as a tangible or visual outcome, but as a methodology, a process for meaningful social care, as a social practice (Lloyd 2014, 2015). ‘Art as Experience’ (Dewey 1934) is an embodied aesthetic and sensory experience that occurs within and between individuals, that connects with people on their terms, in a time and space that has meaning and value to them. More broadly, the work is situated within disability arts, which offer spaces for alternative narratives to be expressed and exchanged, for ableist norms to be contested and for disabled identities to be embraced and owned (Fox & Sandahl 2018; Garcia-Santesmases Fernandez & Arenas Conejo 2017; Ineland & Sauer 2007; Kuppers 2013; Rice et al. 2017). The spaces of disability arts are social, cultural and political, where diversity is celebrated and positioned as integral to an inclusive society. Engagement with disability through the arts supports cripping, the re-imagining of alternative futures, the opening and experimenting with alternative ways of thinking and being to ‘remake the world’ (McRuer 2006).
The use of arts in social care and social work is an emerging field of research addressing an important area of practice that can effect change in the lives of people with disabilities and frame practice in social care/social work (Huss & Bos 2018; Levy 2018; Nissen 2017). Artists and social care practitioners working collaboratively highlights the opportunities for shared learning in inter-professional practice through using creative approaches—the kernels of effective professional practice—to generate new and innovative ways to communicate and develop relationships with service users.
The following sections develop discussion on crip theory and then extend this through the capability approach before exploring the role of relationships, social pedagogy, time and the role of the arts in achieving tangible change in social care. Discussion centres on crip theory being understood as having three key strands: exposing inequity in ableism, ‘intentional visibility’ (Löfgren-Mårtenson 2013) of disabled identities and agency, and creating and embracing alternative lives and futures. Each of these three strands of crip theory re-envisions the lives of people with disabilities.
Crip theory has introduced new dimensions to critical disability studies through framing discussion on valuing and celebrating disability, difference and heterogeneity. Cripping is re-defining and re-imagining disabled identities, ways of being and positioning within society, through critiquing the hegemony of ‘compulsory able-bodiedness’ (McRuer 2006). As Campbell (2009) argues, we must interrogate ableism to understand the significance of difference, privilege and responsibility for change. The act of cripping is working to achieve alternative and positive outcomes for people with disabilities that centre and value the opportunities inherent within diverse ways of being (Goodley & Runswick-Cole 2015). The performativity of crip theory appropriates and inverts the negative narrative of crip. A process of metamorphosis has transformed crip into a positive word that celebrates disability and difference, a process that is ongoing and evolving (Bone 2017). The choice and use of the word ‘crip’ is intentionally provocative, the re-claiming of a negative as a positive. In the words of Nancy Mairs (cited in Kafer 2013: 15), ‘perhaps I want people to wince’ at the word crip in ways that they wouldn’t at the word disabled:
This desire to make people wince suggests an urge to shake things up, to jolt people out of their everyday understandings of bodies and minds, of normalcy and deviance. It recognises the common response of nondisabled people, of the normative to the deviant – furtive yet relentless staring, aggressive questioning, and/or turning away from difference, a refusal to see (Kafer 2013: 15).
The language of crip theory is a critique of the ‘regimes of the normal’ (Sandahl 2003: 27). Cripping is about unsettling, contesting and transforming the ‘normal’ to value disabled differences alongside non-disabled differences and to expose the inequity inherent in ableism. The prevailing hegemony of the status quo prevents change and a ‘new normal’ from emerging. Ginsburg and Rapp (2017) contend creating a ‘new normal’ is a work-in-progress and cripping can mobilise its forward motion, open spaces where opportunities for seeing and doing difference can affect and effect social, political and cultural change. In developing their argument around ‘cripping the new normal’, Ginsburg and Rapp (2017) draw on the concept of ‘worlding’ and ‘world making’. They use the terms to refer to the imagining, the visioning and the ambition of an alternative, not yet achieved, world of ‘imagined futures’ and ‘inclusive spaces’ (Kafer 2013). The narrative around the use of ‘normal’ in crip theory is dualistic and hierarchical; normal exists as the antithesis of abnormal, they are interdependent, but one is privileged over the ‘other’. This narrative is however intentional, just as ‘crip’ provokes a response and a dialogue, likewise the use of ‘normal’ is intended to provoke questions and critique of how certain bodies are privileged and included, whilst others are marginalised and excluded (Löfgren-Mårtenson 2013; McRuer 2006). Crip theory is a collective practice, and as we are ‘all constituted in and through’ the practices that sustain ableism (Peers, Brittain & McRuer 2012: 151) and enable ‘normal’ to flourish as limited and narrowly conceived; we are all responsible for creating and maintaining meaningful change. We need to find and articulate alternatives to ableism as a way into ‘world making’ that support expanding our imaginations and allow us ‘to imagine ourselves and others otherwise’ (Butler 2004: 29).
Crip theory uncovers, exposes and celebrates the strengths and capabilities of people with disabilities. Capabilities, as understood from a capability approach (Nussbaum 2011; Sen 1988), refers to people having the freedom and capability to lead a life that has meaning and value to them and that they are supported to enact these capabilities. Sen’s (1988) use of ‘adaptive preferences’ highlights some of the challenges of enacting capabilities. He talks to the processes of ‘othering’, the adaptation and acceptance of normative practices that can thwart capabilities being realised. Adaptive preferences are not ‘static and unchangeable’ (Levy, Robb & Jindal-Snape 2017: 256), they are contestable and socio-spatially contingent on prevailing understandings of different ways of being in the world, and as such they can be constructed anew. Crip theory challenges and presents alternative futures, making visible what for too long has been invisible, in doing so it opens a space where capabilities can be re-imagined and realised. These interconnections between the capability approach and crip theory are undeveloped but ripe for further exploration.
Cripping care extends crip theory to consider caring relationships, the power dynamics and the role of people with disabilities in care relationships. Douglas, Rice and Kelly (2018) introduce the pedagogy of care as a ‘new turn’ and ‘radical rethinking’ connecting crip theory, learning, care relationships and ‘caring’ regimes. They interrogate the complexity of care, the experiential, policy and symbolic spaces of care, and the pedagogic and emancipatory possibilities of learning from all involved in caring, reciprocal relationships. The cripping of care, as pedagogy of care, entails the re-orienting of care relationships to make care anew and the realigning of power dynamics in relationships. Bringing to the fore the active agency of disabled participants can unsettle the epistemological hierarchies that privilege one form of knowledge (i.e., professional/expert).
All involved in the care relationship are ‘relationally constitutive learners/teachers who generate knowledge through approaching the care exchange as a teaching and learning encounter … an intricate dance within relational space’ (Douglas, Rice & Kelly 2018: 6).
Reciprocal learning relationships are collaborative, open and receptive to the unknown, to change and the learning, unlearning and relearning about oneself, others and our shared world. There are clear points of connection between the pedagogy of care and the work of Freire (1972), hooks (1994) and social pedagogy (Eichsteller & Holtoff 2012; Hamalainen 2003, 2012). This body of work has illuminated the critical social dimensions and possibilities of pedagogy for social change. In contrast to Douglas, Rice and Kelly’s (2018: 4) assertion that the ‘pedagogic features of care remain overlooked and undertheorized’, social pedagogy contextualises critical pedagogy within care and reciprocal relationships.
The development of trusting, reciprocal and inter-dependent relationships is at the core of social pedagogy, as it is in an ethics of care (Gilligan 1982; Tronto 1993). Relationships are the foundation from which change can be achieved at an individual and social level through transformative and collaborative learning (Hatton 2017). This process takes time; it is about being in the present, being authentic, honest and supportive of different ways of being, communicating and learning in the world. It is the ‘art’ of working with and being with service users and carers, engaging as equals, learning with and from each other. From a social pedagogical perspective, when relationships are conceived as pedagogical, people with disabilities and their carers are active partners, their voices and their capabilities are valued and integral to co-producing outcomes.
Crip time refers to a ‘flexible approach to normative time frames’ (Price 2011: 62). Kafer’s (2013) work has contributed to an evolution in crip theory that considers the temporal dimensions of disability and future thinking for people with disabilities. How we understand disability in the present, Kafer (2013) argues, should not determine how we imagine disability in the future; the present can be and should be a catalyst for change. ‘In imagining more accessible futures, I am yearning for an elsewhere … in which disability is understood otherwise: as political, as valuable, as integral’ (Kafer 2013: 3). Current normative time frames constrict and de-limit what people with disabilities can do and what they cannot do, as well as curtailing their aspirations for the future (Simpson 2014). Time itself requires a critical re-conceptualisation (Wood 2017); we need to re-think how we conceive of time in terms of different lives. If we talk of inclusive and accommodating societies, flexible crip time needs interrogating and developing. Orientating to flexible crip time offers a world that can be aligned and responsive to individual differences. ‘Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds’ (Kafer 2013: 27).
The arts offer fertile ground for contesting and re-constructing flexible crip time (Fox & Sandahl 2018; Garcia-Santesmases Fernandez & Arenas Conejo 2017; Rice et al. 2017), an openness to creating space where disability and difference can be envisioned and embodied. Work in this area is revealing the salience of temporal re-imagining in achieving change in the lives of people with PMLD. ‘Being in the moment’ with another person—and the stretching and slowing of time—exposes the performativity of crip time and significant temporal differences between disabled and non-disabled lives, and between disabled lives.
People with profound learning disabilities can experience temporality very differently … chronological or linear time simply don’t fit in this context (Lloyd 2014: 6–7).
Cripping time leads to re-thinking how we conceive of caring relationships, the delivery and experience of care, to find alternative solutions to the status quo of normative understandings and practices of care. This is achieved through involving people with disabilities and ensuring that their time impacts on their outcomes and sense of being. Lloyd’s work highlights how the making of relationships through art are conceived as ‘durational—allowed to progress organically rather than being shoehorned into set schedules. The experience of time is led by the relationship itself: sometimes slowed, sometimes repetitive, sometimes felt as bursts of intensity’ (2014: 8). As relationships change and evolve, the nature and use of time within relationships must also be open and flexible to change. Lloyd (2014, 2015) doesn’t explicitly frame her work within crip theory, yet crip time cogently encapsulates how she is re-defining time to expose ways to bring people with PMLD into the present and to plan for a future to create a space where their ‘alternative understandings of our shared world’ are no longer ignored.
This paper is based on a collaborative project between Artlink and Cherry Road Learning Centre, Edinburgh, Scotland. Artlink is an arts and disability organisation celebrating diversity and promoting the use of the arts to achieve positive change in the lives of people with disabilities and other marginalised groups. Cherry Road Learning Centre is a local authority centre offering day services for people with learning disabilities. The centre has recently been renamed from being a resource centre to a learning centre. As one of the management at the centre noted, ‘a resource centre means you’re coming to use the resources, whereas we’re about learning’. This intentional and public statement of the centre’s commitment to the pedagogical underpinnings of their work aligns with crip theory, as well as social pedagogy, of change emerging through the social activity of learning together.
Artlink: Through involvement in art we make connections between people, their experiences and our community – we value people for who they are and celebrate diversity. (Artlink 2019)
Cherry Road: Learning together to create innovative and meaningful opportunities for people with complex learning disabilities. (Cherry Road Learning Centre 2019)
The two organisations have been working together for over ten years, and through this partnership, Artlink and Cherry Road have pioneered a unique project, ‘the first of its kind’ (Cherry Road Learning Centre 2019). This collaboration is enabling artists to work with people with PMLD and their formal carers, blending art into social care practice. The artists use a unique and personalised approach with each service user, shaping their interaction around the individual. For example, one artist has created a sensorium with a joystick as a navigation tool to control different sounds and images. With another service user, two artists are using a large community hall as the canvas for fast, playful and stimulating interactions with the open space, balls, light/darkness and other equipment (Figure 1). In the words of the artistic director of Artlink, the collaborative work between Artlink/Cherry Road is creating a ‘quiet revolution’ in social care.
This year-long qualitative, appreciative inquiry explored how artists working in a social care setting are impacting on people with PMLD and their formal carers within the context of three key elements of social care: relationships, communication and person-centred practice. The project responded to Scottish Government social care policy to identify ‘creative and effective solutions for supported people’ (Scottish Government 2014). Throughout the project, the researchers were in regular contact with Artlink and Cherry Road staff and attended staff meetings to discuss, plan and share project developments.
Qualitative data from reflective diaries and semi-structured interviews were collected over an eight-month period (Table 1). Reflective diaries (n = 111) were completed by 4 artists and 16 formal carers; and semi-structured interviews (n = 9) were held with 4 artists, 3 formal carers and 2 members of the management team of Cherry Road. Interviews and reflective diary entries ran concurrently for the final three months of data collection (Table 1). The period of data collection over eight months provided the researchers with time to be situated and immersed in the Cherry Road project.
|July 2017||Aug. 2017||Sept. 2017||Oct. 2017||Nov. 2017||Dec. 2017||Jan. 2018||Feb. 2018|
Participants were selected based on their roles at Cherry Road. During the project there were four Artlink artists (two female and two male) working with four service users (people with PMLD: two female and two male). The artists had all been working at Cherry Road for three or more years, and all but one of the service users had been involved in the Artlink sessions for several years. All four artists agreed to take part in each stage of the study: reflective diaries and interview. Each service user had one main carer and, in some cases, additional carers were involved with supporting them in the Artlink sessions during the project. All the carers participated in completing the reflective diaries (n = 16), all four main carers wrote reflective diaries and agreed to be interviewed, although only three interviews took place. The two senior managers at Cherry Road were both interviewed and were able to offer additional insight into the impact of the involvement of Artlink on the overall culture and practice of social care at the centre.
Early observations of the Artlink sessions at Cherry Road, along with conversations with the artists and Cherry Road staff, led to the development of a template for the reflective diaries for completion at the end of the Artlink sessions during the eight months of data collection. The reflective diary template provided questions to stimulate reflection, discussion and learning covering three areas: benefit/impact of the session, transformative moments in the session and learning/self-development emerging from the session. Participants were also asked to identify three words that captured key aspects/learning from the day’s session (Table 2). The reflective diaries were available as a hard copy and electronically. Initially participants completed their reflective diaries on their own; however, over time it transpired that the template was being used for collaborative reflection and discussion before being completed on an individual basis. The longitudinal nature of the project enabled analysis of the first five months of reflective diary entries to inform the development of the interview questions (Table 2).
|Reflective Diary||Interview Schedule|
|1. Benefit and Impact||1. Artlink Sessions|
|1.1 Describe the dynamic (key exciting moments) in today’s Artlink session.
1.2 What did you learn about your service user/carer/artist in today’s Artlink session?
|1.1 Can you describe the Artlink sessions at Cherry Road?
1.2 What are the principles underpinning your work?
1.3 How do you experience the Artlink sessions?
1.4 What do you get out of working with the service users/carers/artists?
1.5 How do you think the service users experience the Artlink sessions?
1.6 What does art and being creative mean to you?
1.7 How is art used in the Artlink sessions?
1.8 Do you think of yourself as creative?
|2. Transformative Moments||2. Collaboration and Shared Learning|
|2.1 Describe the key interactions in the Artlink session. Were they between you and your service user? Between others in the session?
2.2 At what point did you stop thinking about what you were involved in and just participate?
|2.1 What conversations take place between the artists and the carers about the Artlink sessions?|
|3. Learning and Self Development||3. Impact|
|3.1 Use three words to describe what you learnt today.
3.2 Has the Artlink session helped you to think differently about your work/service user, or to change anything?
|3.1 What is the impact of the sessions?
3.2 What leads to impact?
3.3 What have you learnt from what is happening in the sessions?
3.4 How do you think the work of the artists can be translated to other professional practice?
|4. Research Process|
|4.1 What is your experience of being involved in the research process?|
The interviews were all audio-recorded, transcribed and, along with the reflective diaries, entered into NVivo for analysis. As this study sought to step into the experiences of the participants, a research approach was adopted that was phenomenologically led. Horrigan-Kelly, Millar and Dowling (2016) argue that Heidegger’s (1962) ‘Being and Time’ laid the foundations for interpretative phenomenological research and the understanding of lived experiences as ‘being in the world, being with, encounters with entities, temporality and the care structure … in shared humanness, and in shared interactions in the world’ (Horrigan-Kelly, Millar & Dowling 2016: 7). Understanding everyday experiences through the concept of ‘being’ aligns with the tenets of this project, which led to the qualitative data being explored using interpretative phenomenological analysis (IPA) and a six-step process for the analysis of qualitative data (Smith, Flowers & Larkin 2013):
Data were shared between the two researchers, with both conducting analysis separately before discussing the emergent themes. Thematic analysis led to four key themes: art, relationships, learning and time.
The findings presented in this paper are in two sections: Relational care and learning and Temporal re-imagining through art as experience. Both focus on the use of art to communicate, develop relationships and learn from and with people with PMLD through contesting ableist time and normative social care practice.
The narratives of the study participants articulated the salience of learning throughout their work. Learning about each other, particularly about people with PMLD, was discussed as being experimental, dynamic and evolving. The process of building relationships was cognitive as well as embodied (integrated), emerging from the varied interactions between artist, service user and carer. Reciprocal learning relationships were achieved through the valuing of differences and other knowledges, through the contesting of epistemological understandings of expert knowledge. The ‘traditional teacher-student didactic relationship becomes dialogical through shared learning experiences’ (Levy & Young 2018: 22).
The pedagogical dimensions of this work were multifaceted but coalesced around all participants being open to re-imagining ways of enacting and experiencing social care that supported developing agency and learning in people with complex disabilities.
[slowing down] is something I’ve learnt from them [service user]. (Artist: 4, Interview)
So worthwhile that we found out what she [service user] really likes as the time goes on. (Carer: 5, Reflective Diary)
It’s been really amazing to see like, she’s [service user] surprised everyone with what she can do. It’s that thing of like, everyone is learning all the time, so why can’t she be learning all the time? Like why can’t she be experiencing things and changing? (Artist: 1, Interview)
The artists acknowledged that they have ‘creative freedom, and that’s actually quite a privilege’ (Artist 1, Interview). This privilege contrasted with social care practitioners who were perceived to be constrained by guidelines and regulations. The ‘privilege of creative freedom’ was also an opportunity for artists to share their vision of the world and to support ‘non-artists’ to be creative, to re-imagine ways of working. Our findings highlight how the Cherry Road management have integrated working creatively and experimentally into the culture of the centre. They are actively ‘giving permission’, trusting staff to play and experiment with ways to connect and communicate with service users, to create aesthetic and sensory experiences that stimulate opportunities for agency.
We would never scoff at somebody for trying to be creative or trying to do something different, we actually promote and encourage that … She (carer) was new to working with a service user with relatively complex needs… She had mentioned previously that she had wanted to do some yoga and relaxation classes. So I said, “Do you want to try some breathing, gentle yoga exercises with the service user?” She came back and said, “I got such a connection!” I feel like it was a type of “giving permission”, because there’s nothing like that in the guidelines … she discovered something that I would never have discovered. (Manager: 2, Interview)
The Artlink/Cherry Road collaboration has created a liminal space, one that facilitates for people with complex disabilities, carers and artists to feel ‘safe’, alongside a space that exposes them to being vulnerable, to experimentation, the unknown and the new. This liminal space is being experienced as inspiring, fun and empowering. All involved were being challenged to move out of their comfort zone, into the unknown, as an opportunity for transformation and development; into ‘a space which is fluid and where there’s possibilities’ (Artist: 3, Interview).
Relationships are ‘… transformed through a shared sense of vulnerability into a companionship’. (Manager: 1, Interview)
Trust I guess is key. We all enter the space and abandon any preconception of what should or shouldn’t happen over the next hours. Everyone contributes. It’s very democratic, creative and the result is often unpredictable. (Artist: 2, Reflective Diary)
The space we have created together (not the physical space but the trust, the playfulness) lends itself to experimentation. (Artist: 4, Reflective Diary)
Steve Hollingsworth (2018), one of the Artlink artists involved in the project, has unpublished writing on his work which ‘celebrates the diversity of human subjectivity’. Crip theory frames the approach that Hollingsworth and the other artists adhere to:
For many people with complex developmental disabilities the world moves too fast – events happen too rapidly to be perceivable. To try to decipher minds and memories, time has to ‘thicken’ – be made ‘sticky’ or ‘congealed’ somehow – to become slow enough to appreciate. We need to meet on the same level, unlearning our own rapid perceptions and trying to disengage our own sensory habits – our own ‘normals’. Learning to meet someone with complex disabilities in their time allows a meaningful connection to be built, and leads to new and interesting ways of thinking about who we are (Hollingsworth 2018: 1).
A deepening self-awareness and openness to change is evidenced in Hollingsworth’s (2018) practice and writing. Re-thinking ‘who we are’ is a means to affect and effect outcomes in the lives of others in our shared world. Learning about oneself and growing both professionally and personally evolved through the artists working with people with PMLD and their carers, and through the essence of being creative, curious and experimental. Carers found new and creative ways to connect with the people they work with through their involvement with the artists, as well as re-conceiving disability and social care. Once connections were established, the power dynamics within relationships shifted enabling the disabled to take on leadership roles and reveal additional layers of their identity.
Time emerged as a dominant theme in both the reflective diaries and the interviews. The participants used their ‘three words’ in the reflective diaries to capture what had been learnt from the day’s Artlink session. The ‘three words’ provide a useful insight into the cripping of time, illuminating the evolving process of temporal re-imagining as a way to connect and enable people with PMLD to gain agency and a voice in person-centred practice. The participants’ ‘three words’ talk of flexible (crip) time being responsive to the present and to individual differences, of being patient and evolving (Table 3).
|Perceive, Process, Pause||Be in Moment|
|Time is Fluid||Slow, Silent, Calmness|
|Stillness is Important||Patience with Violet*|
|Plans can Change||Accepting Routine Changes|
|Timing to Nicola*||Routine, Reassurance, Flowing|
|Repetitive Movements Time-Concept||Experience the Moment|
|Everything Changes Daily||Relationships Moving Forward|
The narratives of the study participants around the topic of time elucidate an underlying pleasure and cathartic affect achieved through responding to the ‘time’ set by the disabled, connecting at a human level and sharing control and leadership.
It’s about being in the moment and just relaxing into that and enjoying that sharing. (Cherry Road Manager: 2, Interview)
I need to slow down … I want to be in the moment a bit longer, see where that takes us. (Artist: 1, Reflective Diary)
Doing things a lot slower … spending time just to be quiet and maybe not speaking for say a few minutes and then seeing how Penny* asks you a question, instead of it always being you asking the questions. (Carer: 3, Interview)
The artists’ work involved being sensitive to the present, enjoying the stillness of slowing and stretching time, and experiencing the ‘moment’ as a conduit to communicating with people with PMLD and facilitating choice and control in their lives. The artists were open to responding to temporal uniqueness and played and experimented with different approaches to find creative ways to develop a dialogical relationship. Temporal relational moments were experienced as foundational to developing reciprocal and inter-dependent relationships.
It’s not about the activity, it’s about this element between us and having real time with someone else. (Artist: 2, Interview)
Temporal relational moments were not planned; they required time to be experienced, to emerge organically. Experimenting and playing were instrumental to creating safe spaces where temporal relational moments could be shared. Taking the time to experiment with the ‘aesthetics of play’ (Artist: 4, Reflective Diary) and being open and responsive to what was presented in the moment was salient, as was not being overly prescriptive, confined by norms and established ways of doing and understanding social care practice.
How do I approach the sessions? With no expectation. I think when I started at Artlink I’d always tried to plan, pre-plan and have an idea in my head what the workshop would be like. I think overtime as I’ve become more experienced and familiar with the type of work that we do that actually there’s no expectation because there’s so many variables that can obstruct that and what people (with PMLD) bring to each session as well. (Artist: 3, Interview)
This work is stimulating conversations on re-imagining disability, the use of time in social care, on valuing difference and being open to alternative ways of ‘being’ and experiencing the world, as the manager of Cherry Road observed:
Watching people develop the skills and confidence in these workshops, it’s almost like we’ve had our eyes closed and we haven’t seen the person. (Manager: 1, Interview)
Furthermore, taking part in the research process appears to have impacted the participants’ professional practice. During the interviews it became clear that the reflective diaries, whilst they initially presented uncertainty and some resistance amongst participants, proved to be a useful tool in enhancing communication, reflection and forward planning between the artists and carers. Participants intended continuing to use the reflective diaries in their practice.
It’s good to actually sit down at the end of the session and to discuss what the session has just meant to you. That is a good thing. … We sat together and filled them in (reflective diaries). … It (research process) has introduced us to reflection. I’ll say something and they’ll say that’s it, write exactly what you just said! That’s why the discussion is important, it’s better. (Carer 3: Interview)
The artists acknowledged that being involved in the project had led them to consider, more than they had done previously, how ‘care staff and their job could benefit from the (Artlink) sessions’ (Artist 3, Interview).
This paper contributes to the currently limited empirical work on the use of arts and the application of crip theory in social care. The findings highlight that the use of cripping time (Kafer 2013) and reciprocal learning relationships are re-envisioning social care with people with PMLD and their carers. This radical approach to social care, and to understanding and valuing people with PMLD, starts with art as a methodology. The artists’ creative use of reciprocal learning relationships emerged from using art as a social practice, a process (Dewey 1934; Lloyd, 2014, 2015), an embodied aesthetic and sensory experience that occurs between people. The dynamic and symbiotic collaboration between artists, carers and people with PMLD was central to achieving positive outcomes. Normative social care for people with PMLD is associated with monotony, inactivity and apathy. In contrast, this work is contesting, unsettling and transforming prevailing understandings of the capacity and capabilities of people with PMLD to communicate, to be actively involved in their own lives (Ginsburg & Rapp 2017).
Through the Artlink/Cherry Road collaboration, perceived boundaries between artists and carers, and between art and social care, have been removed and replaced with new possibilities for inter-professional practice. The study participants used their professional differences to their advantage to learn and to work together and to blend disciplinary knowledge. This is manifest in how safe and vulnerable spaces were conceived. Carers wanted to feel ‘safe’ in their practice, and by extension, feeling safe was associated with predictability, control and ownership of events. This aligns with the prevailing regulated nature of social care in Scotland, as elsewhere in Europe, of practice being carer-led, thus inhibiting genuine person-centred practice being attainable. In the Cherry Road project, the artists had greater freedom and were comfortable with the unknown, situating themselves in vulnerable spaces, where unsettling the safe was a way to experience new opportunities, to ‘remake the world’ (McRuer 2006). The creation of liminal space, between safe and vulnerable, led to a rich and meaningful experience for the study participants.
The findings presented here have introduced an innovative and original approach to integrating the arts into social care, an approach that is responding to temporal uniqueness and experimenting with different ways to elucidate dialogical relationships as fundamental to meaningful engagement for those receiving and providing social care. Crip time (Kafer 2013) and reciprocal learning relationships have been used to critique the interventionist-bent of ‘caring for’ people with disabilities in day centres (Douglas, Rice & Kelly 2018)—places where practice is all too often orientated towards ableist constructs of achieving outcomes of linear development (Löfgren-Mårtenson 2013; McRuer 2006). With the approach adopted here, time and space are malleable, are not restricted to linearity and permit co-created memories. Detaching ourselves from normative time within social care can re-awaken an inherent desire to connect in the moment. This is a message echoed in the broader context of ‘slow’ social care/social work (Webb 2015) of resisting the ‘regimes of the normal’ (Sandahl 2003: 27) and affirming the agency of the self and other.
This study has demonstrated how art can connect in meaningful ways with people with PMLD, but it has neither included them as participants nor articulated their views on the unfolding creative process. This is a limitation of the research. However, this limitation should not overshadow the artists and carers providing a rich insight into the impact of their work in achieving effect and change in the lives of people with PMLD. This work highlights the need to identify innovative methods to actively involve people with PMLD in research (Simmons & Watson 2014). A further limitation of this study relates to evidencing the time required to achieve change. Time has been central to this work within the context of responding to individual differences and cripping time; however, time is also significant in relation to understanding the process of change in applying this work in new settings. For over 10 years the Artlink/Cherry Road collaboration has integrated ‘art as experience’ (Dewey 1934) into the day centre. Whilst this study has presented the current impact of this work, the project has been unable to articulate the timeframe of embedding and integrating creative arts practice into social care. This is an area that requires further research to support the reach and application of creative and meaningful social care.
The collaborative Artlink/Cherry Road work discussed in this paper is ‘challenging the discourse of social care to see beyond the perceived limitations of a section of our population that have very few positive attributes ascribed to them’ (Levy & Young 2018: 11). The ‘new normal’ introduced at Cherry Road is re-imagining social care through innovative practice that has brought artists, people with PMLD and carers together in the spaces of social care. Re-defining time, the slowing down and stretching of time, of being in the moment, were all used by the artists, and increasingly by the carers, as a method for entering the worlds of people with PMLD. Time emerged as salient to re-imagining alternative futures and ways of being for people with PMLD. Ableist practices (Campbell 2009; Goodley & Runswick-Cole 2015) and ‘adapted preferences’ (Sen 1988) within social care have for too long privileged normative time and space, preventing people with disabilities and their carers from fully engaging with each other. The impact of this work is visible in the formation of reciprocal learning relationships between artists, people with PMLD and their carers; in the emerging agency of people with PMLD; and in raising the motivation and enjoyment of social care work amongst practitioners. Crip theory helps to frame this work, particularly the performativity of flexible crip time. Exploring the use of arts in social care practice through cripping time and the capability approach provided a contemporary lens through which to see and make sense of the complexity and opportunities of this work. The addition of social pedagogy (Hamalainen 2012) articulated the dimensions of social learning embedded in the collaborative exchanges and reciprocal learning which, we argue, should be fundamental to all social care.
We do not have to look for art as a tangible, visible product; art is all around us. If we take the time to appreciate and experience the essence inherent in exchanges and the meaning imbued in relationships, art will find us. Conceiving of art as a process—an embodied aesthetic and sensory experience that occurs between people—can support the transformation of normative social care and facilitate establishing reciprocal learning relationships. The artistic director of Artlink talked of leading a ‘quiet revolution’ in social care; for this innovative work to have impact beyond Artlink and Cherry Road, this revolution needs to be more audible. At a time when health and social care practitioners are tasked with being creative and person-centred in their practice (Scottish Government 2014), we should be supporting transforming these ambitions into reality. This approach to social care provides a template of meaningful person-centred practice, an approach based on valuing and integrating diversity into society. The artists in this project introduced ways to be playful, creative and, at times risky, forging a liminal space between safety and vulnerability as a conduit to connect and communicate with people with PMLD and to inspire their carers. The approach to social care we have discussed in this paper has the scope for being used with different user groups and in diverse social, spatial and cultural settings. Artists and social care practitioners should be encouraged and supported to work collaboratively, to re-imagine the present and alternative futures for people with disabilities and other marginalised groups.
Ethical approval for the project was received from the University of Dundee Ethics Committee. * All names of participants are pseudonyms to protect their identity.
Funding for this project was received from Health Improvement Scotland.
The authors have no competing interests to declare.
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