‘Sanitise your hands with rainbows!’ Encouraging self-representation in times of crisis: inclusive reflections on Covid-19, together with women with learning disabilities from East London

ABSTRACT

This article re-contextualises applied drama practice in the wake of Covid-19, with a particular focus on cognitive diversity. From an inclusive perspective, it asks how encouraging self-expression helps to diversify the still often one-dimensional perception of people with learning disabilities in media reports. It thereby continues an on-going argument around empowered representation within disability drama and culture. The article traces arts practice that engaged a group of women with learning disabilities in reflections about the lockdown 2020. The practice section of the article documents three concrete examples from a workshop series with the members of Powerhouse, a group of women with learning disabilities from the East of London.

KEYWORDS:

• Inclusive arts
• learning disability
• applied drama research
• coronavirus
• lockdown

Introduction

The current state of Covid-responses in applied drama

Applying drama methods and arts education in the aftermath of Covid-19 has commenced in outreach work around the globe. Recent practice includes, for example, work with children and teachers in the digital realm or ways to deal with losing a real-life community through innovative, creative tools (Po-Cho Tam 2020; Kathleen Gallagher et al. 2020). Focusing on working with people with learning disabilities, this article adds another facet to these emerging new practices resulting from a creative response to the challenges of Covid-19. Thinking about the concept of self-representation, as empowered participation of the subject in expressing their own agency, the article continues the debate around the representation of people with learning disabilities in the media during the Covid-pandemic.

Practice research into co-creating with people with learning disabilities has become an established sub-genre in academic discussion. Matt Hargrave’s Theatres of Learning Disabilities (2015) invites an aesthetic perspective on neurodiverse drama as art. Petra Kuppers advocates inclusion in the field through a broadened understanding of choreography, e.g. in her compendium theatre&disability (2017) which includes a thorough overview of learning disability drama. Pre-pandemic, The Lawnmowers, an inclusive drama group based in Gateshead, ‘run by and for people with learning disabilities’, deployed applied theatre formats for educational purposes, most prominently for experiential health awareness sessions with NHS staff.

On the whole, inclusive arts research has evolved as a paradigm within the last decade, deploying creative techniques for the purpose of ‘making meaning through artistic forms of inquiry […] and communicating new meaning and new forms of knowledge’ (Fox and Macpherson 2015, 135). Affirming a more mobile position of people with disabilities and their identity, this article builds on the social and affirmative models of disability popularised by Barnes, Oliver, and Barton (2002, 11), Kuppers (2017) and others. Using drama and tactile creation, it evolves inclusive arts practice and research methods contoured by Fox and Macpherson in their Critical Manifesto (2015).

Research inquiry with Powerhouse

The research inquiry behind this article was conducted together with Powerhouse for women with learning disabilities. It asks how women with learning disabilities reflect upon the Covid-pandemic in their own performative voice, facilitated through using different artistic media. Powerhouse are a London-based group of differently-abled women who were often excluded from the digital during the pandemic. This meant the loss of community for around 30 women during the first lockdown 2020. The forms of intellectual difference in the cohort are diverse. They range from people on the autistic spectrum to people with multiple and profound intellectual and physical disabilities. In their own words, the women share a preference for image-based, non-sequential learning, stating that they ‘find reading and writing difficult’.

Many of the members of Powerhouse live in supported environments, some in deprived London neighbourhoods where they are exposed to crime. Due to shielding requirements at the time of the project, it was difficult to engage with some members directly. I facilitated five Covid-response workshops in person between September and October 2020 for the charity. Powerhouse is a charitable organisation based in Newham, East London and coordinated by social pedagogue and inclusive dance facilitator Tae Catford. It exists since the 1990s. The organisation’s aim [in their own words] is to empower women with learning disabilities through the arts in bi-weekly creative sessions. For the workshop series discussed in this article, funding from a National Lottery’s Covid Response Package was used to encourage discussions of Coronavirus and lockdown. This seemed to correspond to a need shown by many members of Powerhouse during phone calls they had with their coordinator.

In the following, I will describe a series of workshops I conducted together with the women from Powerhouse in their community centre in Newham. Part one of the article briefly elaborates on ideas of articulating the position of the neurodiverse self in times of Covid-19 through non-verbal, multi-sensorial arts approaches. This part also contextualises the depiction of people with learning disabilities in the mainstream media and disability arts. In doing so, it raises questions of how to define art-making, enabled by funding for a mental wellbeing purpose. In part two, I will devote space to describing three practice examples in detail from my perspective as facilitator: a lockdown drawing and dance activity; a facemask catwalk; a virus-model session. The article thereby documents the process of how the members of Powerhouse expressed their knowledge about the pandemic in diverse media.

The Scottish Commission for People with Learning Disabilities lists in their independent study on how the Corona-crisis (compare similar cases) has affected people with different needs:

Our survey findings show that people with learning/intellectual disabilities and their parents, carers and supporters are feeling the impact of the Coronavirus emergency. By far the most common concerns raised […] were the reduction or removal of support, increased social isolation, compounded by digital exclusion, and [its] mental health impact. (SCLD 2020, 4)

Despite their interconnectedness, the distinction between socio-economic infringement and individual empowerment is an important one to make. It allows to focus on personal responses – self-responses – of people with learning disabilities and their agency rather than on the financial state of a broken care system or outdated (mis-)understandings of passive victimhood. As the Scottish survey also notes: ‘The small sample size and the fact that the survey was online means that there are many stories that we have yet to hear’ (SCLD 2020, 4). The location of Powerhouse in England rather than in Scotland adds different stories and enriches the findings without denying that funding issues and tragic life-and-death stories have formed a devastating part of the Covid-experience for the learning-disabled community.

Methodology

The methodology deployed for this piece of practice research is informed by an inclusive arts approach that uses drama and other creative tools to explore a topic beyond words. Fox and Macpherson (2015, 26) understand that this approach operates with a ‘diversity of languages (visual, verbal, gestural, sonic) [to] communicate’. In doing so, inclusive practice makes (verbally-exclusive) information accessible for marginalised groups but also helps to express the perspective of marginalised communities on their own terms for others. The results from the workshops provide an educational experience for the reader as well, in a similar way as The Lawnmower’s inform about their experience with the health system through the use of artistic expression.

The outcomes will be evidenced through two visual artefacts and other representative examples produced by the group. To give insight into my perspective as facilitator, the article provides descriptions of the practice, based on field notes taken after each session and incorporated in the analysis part. Further, individual’s quotes will allow the voice of the participants into the text. Applied theatre is understood, following Dani Snyder-Young (2013, 4), as a ‘wide range of practices with participatory dramatic activities […] for a broad set of purposes including education, community building […], and advocacy’; and, I would like to add, as a strategy to bring out agency in participants and articulate alternative narratives through multi-sensory communication that can complement dominant media narratives.¹

In line with this understanding, the article articulates through documenting practice how applied theatre tools can be rendered useful in our current social, medical, and cultural context when working with people with learning disabilities. These tools can facilitate self-representation as a response to the reporting of others. Self-representation as a concept is thus understood as a representational practice that involves the subject in their own description of their agency. The women speak for themselves, form and content align. The resulting narrative is in dialogue with, yet at the same time different from how others express the subject-state of the depicted.

The idea of self-representation also emphasises that we are dealing with a dramatic context – an arts context – in which an awareness of the self as being acted out is part of the brief. This idea of fictionalising the appearance of the self was encouraged as part of the dramatic tasks (e.g. exploring fashion poses; the invitation to create a scene that is different from the identity of the actress). However, sometimes personal experiences were channelled into arts-and-craft making processes, for example, when designing a message for a loved one. This locates the practice as a fragile oscillation between mental wellbeing session and arts approach. It presents the individual selfs in fragments rather than as continuous whole. The thick descriptions around the artistic output are therefore used to question strategies of narrating the self (as stand-in for a monolithic group identity). The materiality of the exercises that sometimes seems to work against a stable performance reveals the inevitably fragmentary and insufficient nature of documented representation.

The underlying assumptions of the function of applied drama converges with Po-Chi Tam’s Covid-response observations in a previous issue of this journal (2020). Tam draws on the methodology of Te Rito Toi, an educational theatre method that deploys arts in post-trauma work. In Tam’s work with children after the Covid-trauma, arts education becomes

a safe, playful, imaginative space to share, explore and make sense of the experiences and issues that they feel uncomfortable about […] to articulate and re-articulate those feelings and experiences in their own ways but also find new possibilities to cope with them.

A participatory pedagogy for encouraging inclusive reflection yields an innovative reflective opportunity for people with learning disabilities as well. In doing so, it creates a multi-sensorial counter-discourse around Covid-19, providing ways for neurodiverse expression alternative to the narratives that emerge in written or spoken discourse with its baggage of assumptions of passive victimhood. This uncharted cognitive, epistemological, and aesthetic territory is also what brings the three areas of Covid-19, learning disability, and inclusive reflection together. Drama as period of workshops can produce new insights and aid self-articulation in a time that is new for everybody and has not yet become quite ‘normal’, or normative; it allows to reshape representation by broadening the media used when generalising conclusions are still fluid.

The representation of people with learning disabilities and social drama

The question of representation of people with different intellectual abilities is an on-going query in the field of disability arts. Since the 1980s, the mainstream view of people with disabilities, and to a lesser extent of people with profound learning disabilities, has changed significantly. The work of disability companies such as The Lawnmowers (since 1986) or Mind the Gap (since 1988) have helped to redress tragic victim-narratives and to give people with learning disabilities a mature voice, e.g. in productions such as MIA which deals with adult issues around femininity, motherhood, and sexuality. In doing so, these groups have worked beyond a naïve romanticisation through infantilisation in the portrayal of people with learning disabilities; but also against the idealisation of community arts practice as cure-all.

However, in more mainstream reports, certain stereotypes of people with learning disabilities still prevail, perhaps partly inscribed in the medium of language itself used to talk about the individual rather than providing them with a chance to voice themselves in a medium different to the linguistic. In the summer of 2020, the BBC reported on ‘people with learning disabilities […] falling through cracks’, for example. One could read that ‘autistic people [were] left completely stranded’ by the pandemic in the Daily Telegraph (2020). When interviewed, differently-abled people said they felt ‘petrified’, their carers talked of ‘independences [completely ripped away]’ (BBC 2020). Not disregarding how messaging has changed over the last 40 years, the messages about how Corona affected this vulnerable group were nevertheless sparse and bordering on the one-dimensional at times.²

Though arguably with the aim to expose a looming funding crisis, using human tragedy stories as an awareness tool, the overall narrative still came very close to ideas of tragic victimhood. The reports were often not considering the coping strategies many people with a learning disability had cultivated during the pandemic. Online work, for instance, advocated a more active image of people with disabilities during the first lockdown. Charities such as Mencap or the Blue Apple Theatre group in Hampshire fashioned virtual engagement opportunities (BBC 2020). Pointedly, Edel Harris, Mencap’s chief executive, gets to the heart of anxieties prevailing in the community: the financial hardships ensuing from precarious or insufficient funding (Guardian 2020). Occasionally, the mainstream media featured reports like the above, informed by the social or affirmative model of disability revealing an awareness that impairment can create a unique perspective on life and that disenfranchisement is partly socially-constructed (cf. Barnes, Oliver, and Barton 2002, 11).

Inclusive work can also be in danger of paying lip-service to funding criteria and social expectations rather than fostering individual, autonomous expression. The project with Powerhouse received funding with the clear purpose to provide a creative space for rebuilding community and processing mental health issues after the first stretch of lockdowns. In an exercise, many of the members expressed this need by saying they felt ‘angry and upset’ as a result of missing somebody, and ‘hysterical’ as a response to resurging, past grief. Others, however, felt ‘happy’ and ‘fine’. So, the project met some form of need of the group as much as social concerns.

Dani Snyder-Young (2015) has cautioned to probe the mute assumption of the inherent goodness of social theatre praxis. It is with this in mind that we need to remember that Powerhouse offers exercises to the women on the basis of free choice. They can opt in an out as they please. Overall, the women responded positively to the five-week project, the lasting impact however is more difficult to gauge as the funds for the project did not allow for long-term monitoring. Having said that, the opportunity to create art together doesn’t have to be linked to one motivation only.

Following the argument of Matt Hargrave (2015), championing a neurodiverse aesthetics as art inevitably becomes a potent means to diversify the representation of learning disability. On similar grounds, Margaret Ames (2021) recognised the self-affirming power of learning disability dance as art. She reminds us to be careful not to over-state the ‘therapeutic value’ that often accompanies learning disability arts. The aesthetic inevitably becomes political as it challenges an established artistic norm through presenting work that looks ‘different’. I would like to extend this argument to seeing mental wellbeing art as art. Practice that is used for a particular funding purpose produces a contemporary aesthetic between social function, non-mainstream approach, and political agenda. Wellbeing benefits can come from acting in community or producing a more tactile art to complement the digital. In the case of learning disability and Covid, the very ability to reflect with apparent knowledge of the current circumstances becomes a form of aesthetic resistance and political self-assertion.

As a result, drama education for people with learning disabilities does not have to stand in as a therapeutic tool (only) but can be an expressive tool at the verge of understanding shifts in society as well. It also doesn’t claim to solve the looming funding crisis in the care sector through outreach, but it can create relief for brief periods in the form of artistic happenings. Covid-19 has sparked a renewed understanding of applied theatre techniques as strategies to reflect subconsciously during crisis and provide emotional release, when we are not yet able to say (with hindsight) or state in intellectually-certifiable ways. The resulting Covid-aesthetic acts between the socially-necessary and the artistically-unexplored. At these cracks in our current anticipation of a new normal, a (self-)empowered representation of learning disability can arrive.

Positionality and consent

My position as queer, male facilitator with a dynamic understanding of gender creates a complex perspective on the work with women with learning disabilities. Written from the vantage point of observer and participating facilitator alike, the following descriptions aim to create an intersubjective space in which to communicate the work to others, rather than claiming radical neutrality. My own body experience as ‘man with a beard’ arguably influenced my sensorial perceptions of the activities, e.g. when discussing how wearing a facemask feels on the skin. Usually, I wore an NHS rainbow mask in situations with less social distancing. Admittedly, I wanted to promote ‘safe behaviour’ through an (at the time) slightly less reflected approach of leading by example. So, the perception of how I presented my pandemic self might have influenced, or inspired, some of the creative output of the women.

Most of the women of Powerhouse are of my age or significantly older. In a feminist discourse, Laura Mulvey’s male gaze addresses the gendered power dynamics behind the act of (re-)viewing (or perhaps documenting) the female body. Based on a one-sided understanding of power, this can also promote a victim-narrative when it forgets the dynamics of mutual gazing. Further, the idea of clearly defined ‘male’ and ‘female’ viewpoints is in danger of reinforcing binary gender stereotypes as Judith Butler ([1990] 2007, 2–3) and other queer scholars have highlighted. ‘Straight’ assumptions also forget that some of the members of Powerhouse might not identify as cis-gendered women.

It would be naïve to assume that neurodiverse women can’t look back at a ‘male’ observer or remain completely untouched by shifts towards gender equality in a more mainstream society. As an example, the coordinator of Powerhouse asked one of the participants during an exercise to look at me: ‘Do you like to look at [the facilitator]?’ The participant responded with yes. Against the backdrop of Western heteronormativity, the embodied conversations between women are often associated with human warmth or motherly care. Non-verbal communication in a male-female constellation (e.g. through eye-contact), however, tends to be sexualised, or at least looked on critically for the ‘male’ part. Consequently, there is also a lot to unpack about the particular vulnerability of facilitators perceived as ‘male’ in environments of care.

My own descriptions of the project thus reflect sensitivity towards these contexts with an at times overly careful style, bordering on the impersonal and the practice-oriented. A similar cautious rationale applies when talking about ‘the differently-abled’ experience. Pronouns are in line with how the women talk about themselves. I do prefer the people-first term ‘people with learning disabilities/differences or difficulties’, which the women themselves sometimes use, rather than ‘learning-disabled participants’. Having said that, I will use the latter occasionally to facilitate readability and variation in style. The women gave their consent to the project in verbal form. The research went through a process of ethical approval with the coordinator of Powerhouse. Names have been changed or anonymised in the following to secure privacy.

Practice phase

Symbols of lockdown: finding a working definition

For the purpose of adumbrating our subject matter, we addressed lockdown as an unusual time period in our lives, of roughly six months between March 2020 and September 2020, during which we had to observe different social routines. Through a movement-based exercise, we explored the gestures of lockdown that structured our days under the exceptional circumstances. As a dance routine, they felt light and joyful in our bodies, counterbalancing from the start assumptions of stasis associated with times of isolation. We therefore gave bodily shape to lockdown as a discrete daily experience and its related emotions. The shapes altered through mirrored repetition, which gave fluidity to the physicalised definition itself. The shutdown experience turned into a sign system of gestures and images such as sanitising our hands or using a remote control to switch TV channels. This created an intersubjective, partly non-verbal understanding of our subject.

Besides lockdown as a discourse of movements, we also approached the subject with visual definitions. I brought in iconic logos to introduce the idea of ‘symbols’ as representing a space or concept: the yellow M of McDonald’s, for instance, represented food delivery and takeaways; the BBC logo represented ‘following the news’ and keeping up with the guidelines. Specifically, Corona-related were an image of the spiky virus, a facemask-sign, and the Zoom symbol (or phone, as many of the participants were excluded from the digital). In choosing various images, I tried to provide variety so that the participants could select from a spectrum of lockdown logos. I then asked the group to draw their own lockdown icons or representations.

Many participants were familiar with the meaning of the symbols and were well informed about Coronavirus and rules of social distancing. Some presented their masks confidently when they saw the visual discourse. Without hesitation, many women drew the model of the virus or a facemask, as well as burgers. In the drawing process, some of the participants liberated themselves even from the varied selection of templates and created their own mash-up logos. The rainbow hands-image, which also gave this article its title, inscribed a fragment of the body-self into the process of representing Covid-experiences from a more individualised, personal perspective. One of the women traced the outline of her hands onto paper, perhaps in response to the sanitising images. Then, S. coloured the shape of the hands in with stretches of paint arranged in the shape of a rainbow (a symbol which I had not brought in apart from my facemask). This turned the representation of a potentially compulsive exercise of medical hygiene (sanitising) into a diversified image of mental hygiene (imaginative flexibility), giving the symbol a more complex dimension. The move absorbed a wellbeing act into a creative act (Figure 1).

Figure 1. Hope and hygiene: When asked to draw their symbols of lockdown, one regular member of Powerhouse combined the symbol of sanitising hands with a rainbow [Rainbow hands by S. from Powerhouse].

In general, the participation in the exercise showed creative interest in addressing the topic, rather than frightened passivity. The creation of the idiosyncratic rainbow-image marked a form of personal empowerment over more conventional representations around the topic of lockdown, involving elements of stylising the self as part of the design. This observation corresponds to the Scottish study: ‘Most people who responded to the survey felt that they were getting enough information to understand the Coronavirus public health emergency’ (2020, 8); albeit this may reflect more their own initiative, as evidenced by the drawing exercise, than the availability of accessible support.

Further, rather than a binary understanding around limited or repetitive behavioural patterns during crisis, which were often suggested by media narratives not only for people with learning disabilities but also for a wider public, the images advanced the look of the discourse. Bringing clinical advice together with hopeful visions in the same act, the drawing of hands sanitised with rainbows marked a more dynamic notion of the crisis-narrative and re-wired binary emotional associations. Through visual thinking, the sanitising element recognises the necessity of living with certain rules and, at the same time, speaks of agency even within a mentally-stifling routine by pairing it with a more uplifting perspective. This already shows that creative practice materialised knowledge which would have been lost in pre-mediated or in written form. If people with disabilities can present their experiences in a modality of their choice, a much more diverse characterisation of the crisis becomes apparent.

7 Days of lockdown

Over the course of the project, we developed our lockdown gestures into a coherent participatory dance. Contrary to some of the media reports on people with learning disabilities, the group came up with a mix of movement responses that expressed pleasure and discomfort with the experience: Hygiene chores (‘sanitising hands’) blended with exercise (‘walk in the park’), entertainment (‘switching TV channels’, ‘driving in the car’), and mental wellbeing (‘calling a friend on the phone’). Group member K. contributed ‘Happy Birthday’ in Makaton, an accessible version of British Sign Language. Thus, the group produced an inclusive and safe way of singing ‘Happy Birthday’ in a time in which singing was considered dangerous. Through the different actions of our lockdown choreography, the women with learning disabilities expressed an equal awareness of coping strategies and safe practice along the government guidelines (e.g. Hands – Face – Space).

The choreography framed the safeguarding advice in a mobile language that affirmed the individual body’s agency within space, performing against a metaphorical discourse of petrification. The different ways of how the women realised the movement scraps according to their own physical abilities (some sitting, some standing), produced a varied dance style, dramatising differences in mobile bodies rather than an un-diverse representation. A sense of release was palpable in the room during and after the dance. This resulted from uncovering a more expansive movement style and the feeling of community through shared gestures even within the confines of social distancing. Individual agency through varied, non-verbal gestures pushed back (and was actively felt) against an overall narrative of stasis, doom, and passivity. Through embodied reflection, the medium of dance helped to express how the women coped during lockdown.

In the end, we whittled our lockdown movements down to seven activities and matched each with a day of the week. Helping to contain the experience and learn (process) it as a dance, we structured the movements musically. The coordinator of Powerhouse suggested Craig David’s ‘7 Days’ as the women enjoyed listening to pop music and the radio as part of the sessions. Expressing to pre-recorded music was also a safe way to perform as a group with enough space in between each member (without explicit singing). The song helped to shape our routines into a memorable structure through repetition as a collective. Every repetition of the dance over a period of five weeks changed the shape of the routine slightly, thus, the gestural lockdown language showed flexibility.

In doing so, it might have revealed in hindsight that though a months-long isolation period might feel monotone in the moment, its routines may have differed from day to day. Physical excitement was noticeable in the space as the dance routine was eagerly anticipated as one of our weekly warm-up rituals. The women, sometimes not keen to join movement pieces immediately, seemed ready to repeat the dance with spontaneous alterations. In this way, the group rehearsed an understanding that there are choices available even in times of lockdown. The dance felt like a non-verbal coming together enabled by, and not despite, the practices that were meant to keep us apart. The routine relied on an aesthetic language that acted in-between recognising the work as autonomously-changing artistic expression and socially-distanced wellbeing technique.

Catwalk and unravelling

Most of the members of Powerhouse were comfortable wearing a facemask. However, some had stated in conversations with their coordinator that they were ‘totally against wearing them’, and ‘felt hot’. (Of course, some of them were also free to ask for an exemption.) The common opinion about masks was that it was necessary to wear them. Some women felt that masks made it difficult to breath, and therefore carried face shields. The objective of our facemask fashion walk was to inspire the group to design their own facemasks and arguably also to make it feel easier to comply with some of the rules in place at the time.

Working with different textiles, colours, and stickers for the creation of the face coverings added a tactile element to the project. In times when touch could be rendered awkward due to rules of social distancing, the direct engagement with fabrics initiated an alternative physical experience. I brought in pieces of cloth (e.g. kitchen towels, but old T-Shirts would do, too), paper napkins with different patterns, glitter and arts and crafts glue. All these materials were checked for safety – whether they would irritate the skin or the respiratory system – and again, I hoped, covered a variety of tactual options.

As preparation, the glue was diluted with water. Then, with the help of paint brushes and sponges, we soaked the napkin fabric and merged the sticky paper with parts of the underlying cloth. In this way, two or more materials combined to create fashionable patterns. Colours, stickers, and glitter could be added to give the facemask a multi-sensorial feeling. The task sparked enthusiasm amongst the members and dissipated the educational component of the project into a creative undertaking.

After the masks had dried, most of the members presented their own designs with pride and were eager to wear them as a token of self-expression. When the women helped each other to put on their high-fashion masks, the cloth occasionally tickled their skin or brushed their ears, bringing about sensations of physical contact safely mediated by the fabric. Arguably, through the varied embodied stimuli the facemasks had engendered, the sensibility towards them had changed in contrast to the opening reflections. The focus had shifted from the more irksome aspects of wearing a mask to the pleasurable aspects of wearing it as a touch object and a personal fashion statement. The passivity of just wearing a mask given to you was transformed by progressive creativity into a more active choice. Each facemasks design evidenced a unique artistic style that gained value in a process of self-articulation.

This is not to say that the emphasis on unique individualities is not partly produced by the very same neo-liberal, post-Enlightenment discourse that excludes people who are not able to present their personhood in a stable, conventionally-recognisable identity language (cf. Butler [1990] 2007, 80). Though functional as face coverings, the various fabrics came apart at the seams after stretching them over the ears and mouth. Some masks unravelled while we cut holes in them or worked with glue. It was difficult to repeat or preserve the exact look of them and its associated embodied sensations after their use. In a way, the un-making of the textures of the personalised facemasks, happening at the same time as posing with them for a fictional social media account, exposed the fragility of an attempt to capture a stable (lockdown) self that communicates itself in different media.

Literally and metaphorically, the softer power of the non-verbal languages we deployed struggled to produce signs that could be easily quoted or archived within the formats of disembodied medial communication. Rebellato (1999, 34–35) applies post-structuralist discourse to British drama in a similar way. He argues with Derrida that signs need to be iterable to work as reliable communication: ‘linguistic signs (“marks”) have to be quoted to be of any use [in our structures of reception]’. The facemasks escaped that very requirement. The symbols of lockdown we produced were difficult to quote in their various layers, partly because they were para-linguistic, even para-visual signs.

The quotable version of the masks (as pictures, e.g.) yielded an inevitable reduction of the layered mesh of expressive strategies. Facemasks are not designed to be pictured only, but as objects to be worn close to the body, ideally more than once. A picture of a mask does perhaps remind us of a shutdown experience, thus, but does not reiterate it as a physical sensation. An unravelled mask can barely be worn again. The aesthetic and material propensities of the masks resisted the merely functional and the iterative in their tactile reality. Thereby, they expressed outside of established communication rules as well as playing with expectations of how the masks should work. Their textile quality partly escaped the rules they tried to reenforce.

In a concluding act, the masks were presented in a catwalk-style performance. The masks with all their textual complexities became a central statement piece as a clinical function, as an object of style, and as a conceptual metaphor. In doing so, this practice example could stand in for the difficulties of adequately achieving the representation of how our selves felt during the changing monotonies of lockdown, especially when uncovering a differently-abled perspective. The facemask task reminds us to individualise stories about marginalised groups as much as seeing individualisation itself as a dynamic, continually ravelling and unravelling mesh. In our little parade, the masks became the motivating factor in the performances of the self. They were not perceived any longer as hampering accessory only. Their textures brought in a haptic meta-comment on the mesh-aesthetic and the different argumentative threads surrounding the representation of the identity of people with learning disabilities.

Catching planets

The depiction of the virus itself presented a challenge. As facilitator, I wanted to bring short reflections on virology into the project; yet, I didn’t want to upset members of the group with content that could potentially trigger anxiety. Therefore, I decided to approach the actual model of the virus – a ball-shaped structure with club-like spikes – through arts, crafts, and metaphor. During an initial check-in before we embarked on making our own sensorial Corona-models, the group recognised the round shape with the halo and commented that ‘it means we need to keep our distance’. Some likened it to a star or spider.

I adapted arts-based strategies of model-making from science classes into an exercise to illustrate the Covid-virus-structure. The style of the work appropriated the scientific aesthetic of planetary models with tactile play and artistic experiment. Medium-sized Styrofoam balls, pipe-cleaners as well as Q-tips with their club-like endings were used to craft the Covid-models. Acrylic paint, beads, and fluffy objects complemented these choices. The various objects could be stuck to the surface of the balls and arranged in from of a corona. Thus, the women from Powerhouse created their own models of the virus. Again, an element of individual design entered the task. Figure 2 gives an idea of how every model looks slightly different, carrying individually-cut pipe cleaners or varying surface colours. Being able to ‘talk’ about Covid in this tactile way marked an alternative way to take part in a scientific, contemporary discourse, but it also provided a template for free individual creation.

Furthermore, through assembling the enlarged virus out of its parts – with the ball in the centre and the Q-tip spikes protruding outward – the participants and we as facilitators started to understand the virus better. The models easily visualised what made the virus different from other viruses and how it received its name, alluding to a halo. At the end of our design session, the women of Powerhouse had the chance to voice their insights and feelings. The metaphor of spiders from the beginning was complemented by one member’s observation that her model looked ‘like a planet’. This marked an interesting commentary on the power of naming things and thereby (inadvertently) producing a network of pre-set connotations. A different linguistic isotope can lead to different assumptions around the virus, just as a different medium evidences different narratives around women with learning disabilities in times of crisis.

Figure 2. Creating tactile models of the virus: Diverse associations with the shape of Covid-19 revealed a dynamic understanding of one of the key symbols of lockdown [Models by the members from Powerhouse].

In the following session, we performed a short drama game with the models. Almost like the performance of a science experiment in a school class, we analysed what we saw. Through a catching exercise, it was possible to demonstrate that, because of the clubbed ring, the virus gained more grip in comparison to viruses with smooth surfaces. Thus, it was easier, or quicker, to take hold of it – to literally catch it. The pipe cleaners contributed a pleasant, ticklish tactile sensation, counterbalancing more difficult associations with the representation of the virus.

Finally, I brought in a short piece of internet research to contextualise: Because of its corona grip, the virus is also more prone to respond to a vaccine, as the spikes do not change as quickly and make it easier for a vaccine to hold on to the structure (cf. Russell 2020). Therefore, through an active getting in touch with the actual virus, we were able to creatively reflect and learn about the ‘nature’ of how it works. Admittedly, it is difficult to mitigate the medical associations of the illness and its images of suffering. But a representational approach that has multi-sensory affirmation rather than tragedy as guiding understanding entrusts that learning more about how the virus works and how we relate to it can be perceived as a process of agency. Taking part in performances of learning often considered to be exclusive to the intellectually-able (i.e. scientific understanding) can ultimately give rise to a space of positive self-representation for the participants.

Conclusion

Using methods from applied theatre and inclusive drama research, this article complicated dominant, often tragic media representations of how people with learning disabilities dealt with the Corona-crisis. The project highlighted more nuanced, individualised responses. Through thick descriptions, however, the article also illustrated the difficulties of grasping a single counternarrative. The multi-modal techniques deployed encouraged the women from Powerhouse to reflect upon Covid-19 and the experience of the pandemic in their preferred medium and through non-verbal bodily sensations. In doing so, one-dimensional representations of a ‘disabled experience’ of lockdown were rendered complex through drawings that blended diverse images around the pandemic into a new visual discourse; a choreography of weekly routines that evidenced flexibility and mobility in times of crisis; or the tactile performances around scientific learning and wearing facemasks. The resulting aesthetic vacillated between social theatre, free stylistic experiment, and wellbeing tool.

At the point of writing this, it is still uncertain how exactly a future with Coronavirus will look like. But what seems certain after these insights won through inclusive arts research is that people with different needs are much better equipped to deal with times of crisis than is still often believed in a mainstream debate. Questions of representation and aesthetic can only partly address a bigger crisis on the back of the pandemic. Participatory art can provide and perform visions, methods, and structures of understanding difference that encourage self-representation in an affirmative way, not just within marginalised communities. But now, it is on our societies to provide the lasting funds to continue the individual work.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The project was made possible by the Coronavirus Community Support Fund and the National Lottery. The facilitator acknowledges that government funding went into the making of this project. The grant number is 20134451.

Notes on contributors

Florian J. Seubert

Florian J. Seubert, B.A. (University of Bamberg), M.St. (University of Oxford), specialises in music drama and inclusion. His projects have been funded by the Arts Council England, Opera Holland Park, and others. He is currently completing a PhD at Goldsmiths, University of London. (www.florianjseubert.co.uk)

Notes

1 Following inclusive research guidelines also ensures an ethical approach towards conducting co-research with people with learning disabilities: It contains element of a ‘user-led’ approach and is interested in some ‘practical benefit to the self-empowerment of disabled people and/or removal of disabling barriers.’ Cf. Colin Cameron (2014, 35) on Priestley’s disability research guidelines.

2 This might be seen as an alternative form of misrepresentation of people with (learning) disabilities to what Briant, Watson, and Philo (2013) note about reporting disability in the age of austerity; though perhaps more to elicit sympathy in a renewed sensibility of community in the wake of Covid-19 rather than the ‘creation of a new folk devil.’