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‘Severe’ Sensory Theatre: Building Relational Disability Politics during UK COVID Lockdowns

Published online by Cambridge University Press:  26 September 2024

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Abstract

This article examines the COVID-era shift in the disability politics of sensory-theatre artists in the United Kingdom who create work for neurodiverse young audiences, arguing that the pandemic pushed them toward a more expansive and overtly political understanding of disability. I examine the work of three companies – Oily Cart (London), Frozen Light (Norwich) and Spectra (Birmingham) – who adjusted their practices to embrace their audiences’ shifting access needs, including those in caregiving roles. These changes move sensory theatre into a more politicized realm, echoing calls from crip studies scholars and disability justice activists to reimagine disability as a relational category from which solidarity can arise that does not hinge entirely on medical diagnosis. These artists’ renewed commitments to relational access provide lessons for performing artists and audiences navigating how to care for one another through the massive death and disablement of the ongoing pandemic.

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Copyright © The Author(s), 2024. Published by Cambridge University Press on behalf of International Federation for Theatre Research

Introduction

March 2020 and the months following were terrifying and unsettling for just about everyone, but this period took on a uniquely nightmarish quality for people with learning disabilities and those who care for them. In the United Kingdom, government-mandated lockdowns aimed to prevent the spread of COVID-19 by shuttering most businesses and prohibiting anyone from leaving their homes for any non-essential activities. Hospitals around the country (indeed, around the world) filled quickly with patients experiencing severe respiratory symptoms, pushing the publicly funded National Health Service (NHS) to its limits. Fears of a strained NHS and other government services prompted many to advocate in favour of rationing financial and material resources away from those determined by policy makers and medical professionals to have a lesser quality of life due to disability. Local councils, typically responsible for providing publicly funded home care for disabled citizens, were released from this statewide mandate in the early weeks of the pandemic when doing so could be deemed ‘not reasonably practicable or … impractical’, vague guidance that resulted in a deprioritization of this care.Footnote 1 NHS doctors issued blanket statements to many patients with learning disabilities, instructing them not to go to the hospital if they contracted severe COVID, as they were deemed ‘too frail’ to use potentially life-saving ventilators.Footnote 2 Even more insidious were the hundreds of non-consensual ‘do not resuscitate’ (DNR) orders placed in the medical files of learning-disabled care home residents, which an official report later indicated ‘may have caused “potentially avoidable death”’.Footnote 3 These eugenicist practices, coupled with lockdown isolation, reduced care assistance, and in many cases health conditions that contributed to a particularly high risk of life-threatening complications from COVID-19 created a uniquely hostile environment for people with learning disabilities and their carers.

Amidst these dire circumstances, artists making work with and for disabled communities were pushed to reconsider their relationship with disability activism. This article examines the COVID-era shift in the relational disability politics of sensory-theatre artists in the United Kingdom who create work specifically for neurodiverse young audiences. I argue that the pandemic pushed sensory-theatre-makers and their audiences to a more expansive and politicized understanding of disability. The sensory-theatre field has always placed a strong emphasis on accessibility for its audiences, many of whom face significant barriers to accessing more traditional theatrical performances, and the practitioners with whom this paper engages have worked to sustain this important focus during the rapidly changing, isolating and often terrifying time surrounding the global COVID-19 outbreak. Artists’ renewed commitment to centring disabled experiences in their storytelling and an expanded sense of institutional access, especially with regard to artists’ relationships with carers, may provide new perspectives on what theatrical accessibility actually looks, feels, smells, sounds and tastes like for the communities with whom they work.

I begin this article with an examination of terminology and my theoretical alignment with neurodiverse and crip politics. I then move on to an overview of pre-pandemic sensory-theatre practice to articulate how the field's long-standing commitments to accessibility played out prior to COVID-19. In the second half of the article, I examine the work of three sensory-theatre companies – Oily Cart (London), Frozen Light (Norwich) and Spectra (Birmingham) – during the spring and summer of 2020, noting how each company adjusted their practices to embrace the shifting access needs of their neurodiverse audiences, especially those in caregiving roles. These changes in artistic practice echo calls from crip studies scholars and disability justice activists to view disability as a relational category from which a political solidarity can arise that does not hinge entirely on medical diagnosis. I conclude by arguing that these artists’ renewed commitments to relational access can provide lessons for performing artists and audiences of all kinds continuing to navigate how to care for one another through the massive death and disablement of the ongoing pandemic.

A note on terminology: ‘neurodiversity’ as a crip category

I use ‘neurodiversity’ to illustrate the wide range of cognitive and sensory perspectives encompassed in any given sensory-theatre audience, and to resist the binary and medicalizing framing that persists in the ways many sensory-theatre artists market their work, including some of the artists discussed below. Autistic scholar Nick Walker posits a ‘neurodiversity paradigm’, through which to consider ‘the diversity of brains and minds [as] a natural, healthy, and valuable form of human diversity’.Footnote 4 Practitioners differ in the ways they refer to their intended audiences and their use of disability language and labels, often specifically marketing work towards children with diagnoses of autism and profound and multiple learning disabilities (PMLD).Footnote 5 However, audiences almost always contain individuals whose communication and access needs vary widely within those described by a diagnosis of autism or PMLD, and these diagnostic labels do not encompass the fullness of or diversity among the lives they describe. Further, in most sensory-theatre audiences, each disabled audience member is accompanied by one or more family members and/or carers, who are often (assumed to be) neurotypical, non-disabled adults. The concept of neurodiversity allows me to examine a sensory-theatre audience holistically, including neurotypical or neurotypical-passing carers, whose role in sensory theatre shifted dramatically during COVID. I use the term ‘neurodiverse’ to move away from a focus on pathologizing categories like autism or PMLD, and instead to emphasize a broad range of communication styles, personalities, sensory awarenesses and impairments.

‘Neurodiversity’ is more than just a convenient term to describe an audience that incorporates many different people; the term arises from a political movement that aims to combat what Walker calls the ‘pathology paradigm’, a deeply engrained societal belief that positions disabled and neurodivergent people as dangerous deviations from a non-disabled/neurotypical norm.Footnote 6 Molly Mattaini notes that despite few artists explicitly making this connection, sensory-theatre ‘productions do not seek to offer therapeutic fixes to autism [or PMLD] and … [instead celebrate] the distinct ways children with autism perceive the world’, a key tenet of neurodiverse politics.Footnote 7 I build on Mattaini's claim here to argue that sensory-theatre artists during the early months of the COVID-19 pandemic embraced an even broader crip political point of view, looking broadly and relationally at the communities they served rather than focusing narrowly on individual audience members.

My use of neurodiversity as a political category elaborates on broader thinking within critical disability studies and crip theory. Alison Kafer highlights that ‘crip theory is more contestatory than disability studies, more willing to explore the potential risks and exclusions of identity politics while simultaneously and “perhaps paradoxically” recognizing “the generative role identity has played in the disability rights movement”’.Footnote 8 Crip theory's move away from the often individualistic and identitarian-focused frameworks of early disability studies scholarship allows a consideration of disability as, in Kafer's terms, ‘political [and] relational’, in that ‘the problem of disability no longer resides in the minds or bodies of individuals but in built environments and social patterns that exclude or stigmatize particular kinds of bodies, minds, and ways of being’.Footnote 9 The ‘relational’ aspect of this model suggests that disability is located in relation to other people and environments, and that one's disability status depends on one's human and material surroundings, rather than on one's ability or willingness to proudly claim a disability identity. A crip(ped) methodology allows me to consider the various participants in the sensory-theatre landscape (those with and without traditional claims to disability identity) alongside one another to consider the potential for political alignment through solidarity and relationality.

Many crip theorists push back against the common understanding of disability as an apolitical (or depoliticized) category, which they argue results in ableist understandings of access as requiring charitable goodwill from those in power rather than broader social transformation. This depoliticization often means that disability labour is not seen to count as political activism; for this reason, I use ‘political’ and ‘politics’ to describe sensory-theatre practice. In Activist Affordances, Arseli Dokumaci argues for an expansive, relational and ‘ecological’ understanding of disability that considers disability as living between people and their/the environment.Footnote 10 Dokumaci considers the small, individual ‘activist affordances’ that disabled people make to navigate their day-to-day life despite conditions like chronic pain: actions as seemingly inconsequential as lifting a mug in a certain way in order not to move one's wrist. She argues that these adaptations are performative acts that work to build a more accessible world, and are therefore political acts. Like Dokumaci, I argue that seemingly small practical adaptations can have immense world-building power, and thus that sensory theatre artists’ adaptations to the debilitating context of the COVID-19 pandemic and the rationing of state resources should indeed be viewed as a form of crip activism.

To be clear, I am not making identitarian claims on behalf of sensory-theatre audiences or suggesting that sensory-theatre artists made these claims about their audiences; rather, I point to a political/relational approach to disability that I argue emerged from practitioners’ new emphasis on the carer experience alongside the experiences of those for whom they care. I am not interested in claiming any identity – or, indeed, any individual political stance – for the neurodivergent audience members who have long formed sensory theatre's audiences, as many of them do not or cannot make such linguistic claims, nor do I intend to suggest that individual carers themselves began to claim a disability identity. Instead, I use crip theory's relational claims as a framework to articulate an emergent political alignment between carers, sensory-theatre artists and neurodivergent audiences. In articulating such an alignment based on solidarity politics, my aim is not to flatten the embodied experiences of carers and those for whom they care; instead, a political/relational lens allows me to highlight shared political and social investments in the context of the COVID-19 pandemic and lockdowns. There are many possible approaches to examining sensory theatre during this time, and I hope other scholarship takes these up, but artists’ emphasis on holistic care for their (neuro)diverse communities points me towards such a relational approach.

Pre-pandemic sensory theatre and relational access

Sensory theatre uses theatricalized multi-sensory play in order to be accessible to neurodiverse audiences, allowing multiple entry points for audiences that may have divergent – and even competing – access needs.Footnote 11 Sensory theatre-makers facilitate access through intensive one-on-one interaction, resulting in flexible performances that respond to physical and auditory input from audience members, with performers curating individualized experiences that communicate the production's theatrical world through primarily sensory means. These productions typically de-emphasize verbal communication in favour of immersive environments, stress audience choice in interactive moments, and offer extensive pre-show preparatory materials.Footnote 12 These techniques developed in England in the 1980s out of the work of artists creating theatre for the very young (TVY), with London-based Oily Cart at the forefront of the genre's development, and have since been taken up globally by artists with a wide variety of backgrounds and training, as highlighted by Oily Cart co-founder Tim Webb and several other international sensory-theatre artists in his recent book Sensory Theatre.

Driven by their emphasis on accessible communication, sensory theatre performers and creators incorporate learnings from educators, sensory play practitioners, occupational drama and music therapies. Because sensory theatre-makers create work for such (neuro)diverse audiences, they make use of different access points for audience members, placing equal emphasis not just on the five commonly recognized senses (sight, sound, smell, touch, taste), but also on what many sensory-theatre artists refer to as the kinesthetic sense, or sense of movement.Footnote 13 Performers are trained to observe audience members closely and take cues from carers as to what experiences – and how much of them – to offer. To facilitate this deep interpersonal engagement, performances typically occur with very small audiences of ten or fewer neurodivergent participants and their carers. This one-on-one interaction results in highly flexible performances that take audience members’ communication with performers into account, resulting in discovery and adjustments to the theatrical text as a performance unfolds, and establishing ‘relationship[s] in which [the performer] can perceive and creatively respond to each and every reaction from the participants’.Footnote 14 Through these relationships, performers get to know neurodivergent audience members through repeated offers of sensory play, looking for verbal or non-verbal signs of curiosity or excitement and responding to suggestions for modifications from neurodivergent audience members and their carers.

Although sensory theatre-makers have traditionally not articulated alignments with radical neurodiversity or crip politics, many of their practices align with these movements. To begin with, the act of creating art specifically for a disenfranchised audience and asserting their right to occupy cultural spaces is political in and of itself. Work created for neurodiverse audiences must navigate complex power structures and barriers to access and inclusion for its audiences in a way that work for neurotypical children or adults does not. These barriers can range from the physical – inaccessible seating in theatres for audiences and backstage areas for performers or the scarce availability of accessible public toilets equipped with hoists – to the attitudinal – venue staff uncomfortable with speaking directly to disabled audience members, or the common practice of programming performances for disabled audiences within educational programming rather than in their main season. Prior to the pandemic, Frozen Light worked to challenge these barriers by insisting that the venues where they performed their work undergo staff training and advocated for greater availability of Changing Places restrooms, quiet lobby spaces and wheelchair-accessible performance spaces to enable their disabled audience members to access theatre spaces equitably.

For readers familiar with the relaxed performance movement, this sort of advocacy for disabled audiences may seem familiar. While relaxed performances offer an important intervention that expands access to the arts, their approach to access differs fundamentally from that of sensory theatre-makers. Relaxed performances, also often called autism-friendly performances, are marketed towards neurodiverse audiences and typically ‘include reduced intensity of lighting and sound, the provision of visual stories to familiarise theatregoers with the venue and production … trained staff on hand to assist visitors’ and quiet spaces and relaxed rules regarding noise and movement in the audience during the show.Footnote 15 This checklist of accommodations serves as the basis for a relaxed performance, and sensory theatre also incorporates many of these access tools, but takes them further through a commitment to relational access, a term I employ to summarize the access philosophy articulated by disabled dancer, scholar and activist Alice Sheppard: ‘access, in all its complexities, is an aesthetic in the work itself as well as a way of building a relationship with our audience. It is an invitation to relationship, not a checklist of things to be done.’Footnote 16 Rather than a one-size-fits-all approach to access, sensory theatre takes its cues from each individual audience member. As Gill Brigg notes, sensory theatre ‘performers watch [the audience] as much as [the audience] watches the performers’ in order to take cues about how to adjust the performance from audience members.Footnote 17 A sensory theatre experience incorporates audiences directly into the action, enabling one-on-one engagement and, in Sheppard's words, an invitation to a relationship between performer and audience member.

Prior to the pandemic, this relationship between performer and audience member often focused on those with diagnosed disabilities at the exclusion of their carers who accompanied them to the theatre. When performers engaged carers during live sensory theatre productions, they often did so by asking carers to perform as behaviour models for neurodivergent participants.Footnote 18 Carers might participate with a production's sensory elements to demonstrate how to politely accept breeze from a hand fan, for example, but an actor would generally spend most of their time focused on the neurodivergent audience member. These actions implied to carers that sensory theatre was for neurodivergent audience members above all, and any enjoyment that carers experienced during the performance was secondary to (and often a direct result of) the experiences of the audience member for whom they care. In his training and writing about sensory theatre, Webb emphasizes the role of carers in giving cues to performers about engaging their companions: ‘The carer/adult companion has a particularly important part to play. With their knowledge of the participant, they could suggest a change of energy or style of movement.’Footnote 19 Though this is certainly helpful in quickly getting to know a neurodivergent audience member's sensory or communication preferences, this ‘important part’ for the carer often overrides their own experiences as audience members, placing them in the role of supporting both the person for whom they care and the artist trying to establish a relationship with them. This dynamic presumes that the carers in attendance do not themselves identify as disabled or neurodivergent, and reinforces a binary understanding of disability. The extensive access practices in pre-pandemic sensory theatre were available primarily to those neurodivergent audience members presumed to need such access, and were facilitated through labour on the part of their carers. Because carers became the primary facilitator for at-home sensory theatre, COVID-19 necessitated a shift towards a more holistic understanding of all audiences – including carers – as relationally disabled by the conditions of precarity imposed by the pandemic and the UK government's response.

Pandemic-era sensory theatre: towards a crip politic

In early 2020, many sensory theatre artists began to take a more politicized approach to disability, driven by the often dire circumstances suddenly foisted upon their clinically vulnerable audiences. Though none of these companies have explicitly claimed crip politics, I argue that the crisis created by the UK government's neoliberal – and often eugenicist – pandemic response accelerated a shift towards this more radical approach. Robert McRuer theorizes this type of radical disability politics as ‘severe’, a framework with particular use in relation to these political shifts in sensory theatre:

a severe critique is a fierce critique, a defiant critique, one that thoroughly and carefully reads a situation – and I mean reading in the street sense of loudly calling out the inadequacies of a given situation, person, text, or ideology. ‘Severely disabled,’ according to such a queer conception, would reverse the able-bodied understanding of severely disabled bodies as the most marginalized, the most excluded from a privileged and always elusive normalcy, and would instead suggest that it is precisely those bodies that are best positioned to refuse ‘mere toleration’ and to call out the inadequacies of compulsory able-bodiedness.Footnote 20

In this framework, the ‘severely disabled’ neurodivergent audience members for whom sensory theatre artists make work open up the potential for such a ‘fierce … defiant critique’ from the field.

The shift towards a ‘severe’ crip political alignment occurred primarily through a relational approach to disability and caregiving as well as the centring of disability narratives. The three companies I examine – Oily Cart, Frozen Light and Spectra – took varied approaches to creating during the early months of the pandemic, including in-person outdoor performances, Zoom performances, and pre-recorded films. Access to funding dictated all three companies’ approach to their pandemic season: well-funded and more established companies like Oily Cart and Frozen Light were able to dedicate resources to multiple projects, offering their audiences choice in how to access sensory theatre remotely, while Spectra's project-based funding limited them to one option. Despite the variety among these companies’ seasons, a common theme among all three was a new kind of attention paid to centring audience perspectives in their narratives and creative processes, and an attempt to make these experiences legible to carers and the broader community.

Rather than engaging in a close reading of a single performance, I examine these three companies together to highlight a larger trend within the field of sensory theatre during early pandemic lockdowns. These three companies were in regular dialogue in early 2020 via the Upfront Performance Network (UPN) Facebook page, an international community of sensory theatre-makers and sensory play practitioners. In March 2020, UPN, facilitated by Oily Cart's artistic director, Ellie Griffiths, began weekly ‘sensory skills shares’, live Facebook video talks from UPN members about both their pre-pandemic practice and how they planned to modify their work to account for COVID and its accompanying lockdowns. These videos mark an important exchange of ideas and practice that enable analysis of broader trends within the field, since Oily Cart, Spectra and Frozen Light were all aware of and engaged with one another's work during this time.

Oily Cart, under the artistic direction of Ellie Griffiths, produced an ‘uncancellable programme’ during lockdowns which provided a range of options.Footnote 21 The Jamboree doorstep tour allowed audiences to choose whether they experienced a personalized performance over Zoom, a small-scale outdoor performance with musicians outside their home, or a larger-scale experience performed in a playground or community centre outdoor space. If these options did not suit a family for whatever reason, they still had the ability to participate on their own terms through the Jamboree sensory sessions YouTube video.Footnote 22 In the spring, Space to Be provided families with a box of sensory supplies and one week's worth of engagement surrounding the objects. The experience unfolded gradually, giving audiences control over how much time to devote to the experience each day during the performance week, and allowing them to revisit experiences should they desire. Audiences opened a new parcel each day during the performance week with sensory supplies, a music track and both written and audio instructions. Finally, Oily Cart embarked on a sensory filmmaking project with disabled and neurodivergent artists, called Something Love, which explored autistic relationships with objects, including bendy straws and squishy foam hearts.Footnote 23

Frozen Light, who create and tour ‘exciting and original multi-sensory theatre for audiences with [PMLD]’, focusing mostly on teenagers and adults, took a similarly varied approach to their season.Footnote 24 Initially, artistic directors Amber Onat Gregory and Lucy Garland were hesitant to adapt their practice to lockdown restrictions, opting instead to dedicate their resources to a podcast with the goal of amplifying the voices of the PMLD community. Podcast episodes featured parents, professional carers and sensory play researchers, as well as, to the extent possible in a primarily verbal medium, teens and adults with PMLD, who accompanied their carers in interviews and can be heard playing music or vocalizing in the background of podcast episodes.Footnote 25 Frozen Light's broad understanding of who belongs in the ‘PMLD community’ through their choice of podcast guests is a clear example of the field's overall challenge to a strict binary of disabled/non-disabled at this time. Though those with a PMLD diagnosis may have been at highest clinical risk of COVID, nearly every episode of the podcast features narratives about carers in disabling conditions: struggling to advocate for their families’ medical and legal rights while also often supporting other children or older parents, working remotely, and strictly isolating from their community. The company's work on the podcast connected them directly with these community members, who began to push Frozen Light to create remote sensory-theatre experiences despite their initial hesitation, resulting in several offerings: a film of Frozen Light's show 2065 with curated parcels of sensory props mailed to at-home audiences; a self-guided sensory poem (Something for Your Shelter); and an outdoor, in-person performance at the Boing! Theatre Festival (Night Out in Nature) in August 2021.

Spectra, the youngest of the companies I interviewed, developed New Heights specifically for Zoom, and mailed packages with sensory supplies, including custom-designed scents and candies, to audience members. Spectra are a neurodiverse ensemble who devise their work collaboratively, typically creating promenade-style sensory theatre productions designed to be accessible for all audiences. Spectra differs most notably from the other companies I discuss in that they do not specify that their work is designed for disabled audiences. That said, because Spectra's ensemble is neurodiverse, the company naturally attracts neurodiverse and disabled audiences. Artistic director Kate DeRight asserts that these audiences reflect ‘the kind of world we'd want to live in’, in which audiences work together through interactive theatre to solve puzzles and move narratives forward.Footnote 26 Rather than designating some performances for neurodivergent audiences and others for neurotypical audiences, Spectra aim to foster integrated, neurodiverse communities at their productions. In addition to their emphasis on neurodiversity, the company have dedicated time to education about racial disparity in Birmingham and in the United Kingdom broadly, working collaboratively as an ensemble and in partnership with Open Theatre, who create physical theatre with neurodiverse children, to develop an anti-racist action plan and work that centres themes of race and disability. Through this kind of work, Spectra labour to create ‘the kind of world we'd want to live in’, operating intersectionally within prefigurative politics, a term defined succinctly by Disability Justice activist Leah Lakshmi Piepzna-Samarasinha as ‘a fancy term for the idea of imagining and building the world we want to see now. It's waking up and acting as if the revolution has happened.’Footnote 27 Much of Spectra's work prior to the pandemic embraced prefigurative politics in this way, but the events of early 2020 led to a deeper investment in imagining and existing in a different kind of society.

Spectra's, Frozen Light's and Oily Cart's prefigurative crip politics became especially evident in their theatre-making and advocacy during the pandemic, pushing the field towards an increasingly overt political engagement in response to wilful government neglect that produced their audiences as high-risk subjects. Prior to the pandemic, the field's primary political intervention was to assert disabled audiences’ rights to access high-quality art and occupy major cultural venues; however, to retain a political engagement with the disability community during lockdown, these artists could not simply pivot to creating remote work to be experienced in isolation. Griffiths highlighted this challenge in an interview with theatre critic Lyn Gardner:

The pandemic … has demonstrated how the people and communities we work with are left out all the time. To see basic rights being taken away reminds us how much they are excluded from the national conversation. Working with this community is about more than being a company that makes children's theatre, it's about being an ally and an advocate who works with them. The questions we keep having to ask ourselves are: is our work relevant, is it useful and how can we make ourselves most useful and relevant?Footnote 28

This question of relevance and use precipitated a new emphasis on the carer as audience member because of their new centrality in delivering the work, making COVID-era sensory theatre a space in which a political/relational understanding of disability thrived. Simply focusing on access to high-quality art at home would have ignored – or worse, contributed to – the ways in which pandemic responses imagine a society in which disabled and high-risk people are disposable or indefinitely quarantined in their homes while the rest of the world resumes business as usual. How, then, could sensory theatre artists continue to assert the rights of their audiences to remain a visible and important part of their communities when access to public space was (and still is) a health risk? Remote sensory theatre became not just a way to provide high-quality theatre experiences for neurodivergent audiences at home, but a way for carers to begin developing an increased political, emotional and sensory alignment with those for whom they care.

Across the board, unsurprisingly, there was a strong push for retaining multi-sensory engagement as part of the work, which relied heavily on collaboration from carers at home to act as facilitators. Practitioners differed in methods to carry this into a lockdown setting, with some companies designing sensory items to be mailed to participants, while others asked audiences to make use of common household items. Oily Cart's Jamboree sensory-sessions video, for example, makes use of objects that families would be likely to have at home: torches, fabric, cardboard boxes, paper, bowls of water, food colouring, baking flour and so on, while adding highly visual and auditory elements through video.Footnote 29 The video features close-up shots of sequins catching coloured lights, shadow puppetry and mirrors, accompanied by Balkan-inspired music from the Jamboree soundtrack. On the other hand, Oily Cart mailed sensory items to participants for Space to Be, as did Frozen Light for 2065 and Something for Your Shelter, and Spectra for New Heights, which incorporated custom-designed scents and tastes delivered in spray bottles and candies, as well as materials designed to alter their audience's visual experience through manipulation of their webcams during the Zoom performance. Regardless of the ways audiences acquired sensory materials, the carer necessarily took on a much more pivotal role than they typically would with in-person sensory theatre.

Neurodivergent experiences and perspectives have always informed sensory theatre with regard to form and audience accessibility, but the productions outlined above suggest an expansion in the way sensory theatre-makers incorporate these perspectives through narrative, creating a new, politicized entry point for carers. Spectra's New Heights, Frozen Light's podcast and Oily Cart's Something Love point to a new investment in telling disabled stories and, further, sharing these stories with an increasingly broad audience. Before the pandemic, the emphasis on multi-sensory communication in sensory theatre productions often placed narrative in a secondary role, as described by Molly Mataini: ‘the narrative structure revolves around the relationship between the audience and physical objects … plot and character are still present, but they are secondary to the aesthetic episodes in which the performers and audience appreciate the multi-sensory objects’.Footnote 30 Nicola Shaughnessy further describes this as a ‘“neuro-divergent” aesthetic, where the emphasis is on the “sensuous and experiential dimensions of the event, rather than on mimesis or narrative”’.Footnote 31 Although the relationship between narrative and sensory experience remains fairly consistent in pandemic-era sensory theatre, I argue that the added incorporation of neurodivergent narratives through language pushed the genre towards a neurodiverse aesthetic that remains accessible to those for whom the ‘sensuous and experiential’ is primary, but provides linguistic access – and therefore more meaningful engagement – for non-disabled and/or neurotypical carers. In the context of COVID lockdowns, carers were no longer just models for how their neurodivergent companion might engage with sensory elements of a production; instead, they were audience members to whom artists communicated a need to align with disability from a political standpoint.

In the ‘Prologue’ episode of the Frozen Light Podcast, Garland shares their mission to ‘document our audience's experience through lockdown and to ensure that this already invisible, really disenfranchised … group in society aren't forgotten during this time’.Footnote 32 By producing a podcast – a fundamentally linguistic medium – Frozen Light pivoted from being a company who communicated with their audience through primarily sensory and theatrical means to one who communicated through almost exclusively linguistic means. Rather than a ‘neurodivergent aesthetic’, per Shaugnessy, the release of this podcast saw Frozen Light communicating through narrative and language to make their work more legible to a different audience than usual. Through their podcast, carers temporarily became the primary audience for a company who make work for disabled audiences, thus briefly casting these carers as disabled through the circumstances of the pandemic, and implicitly aligning them with Frozen Light's political activism on behalf of the PMLD community.

In a similar move, Oily Cart's Space to Be carefully reconsidered the role of the carer as audience member. This production almost completely decentred the Oily Cart performers, instead emphasizing the relationships between disabled young people and their family carers, who acted as facilitators for Space to Be. As the audio track emphasized, Space to Be ‘is just for you, in your home, which means you all are the actors and the audience!’Footnote 33 The experience, an ‘intergalactic, sensory adventure’, unfolded gradually over five days; audiences opened a new parcel each day during the performance week with sensory supplies, a music track and both written and audio suggestions for how families might engage with the parcel's contents.Footnote 34 Families had control over how much time to devote to the experience each day during the performance week and were able to revisit experiences should they desire. The first day of Space to Be was intended for the carer exclusively, featuring a guided meditation and sensory exploration that established a sensory empathy with the neurodivergent audience member, who joined for the subsequent four days’ worth of activities. In a commissioned report on Oily Cart's 2020–1 ‘uncancellable programme’, Maria Varvarigou notes of this carer experience that ‘having a special sensory theatre experience on their own empowered the adults by making them feel appreciated and recognized as a group that also deserves sensory theatre experiences for their wellbeing and self-care’.Footnote 35 By acknowledging carers not only as audience members but as a group in need of care themselves, Oily Cart, like Frozen Light, assert carers as relationally disabled audience members.

Though carers are often notorious within neurodiverse communities for centring their own experiences over those of the disabled people for whom they care, here I focus on the potential, emphasized by these artists’ ways of working, for cripping the carer relationship. Building on the work of Carrie Sandahl and Robert McRuer, Alison Kafer proposes a ‘nondisabled claim to be crip’, in which ‘to claim crip critically is to recognize the ethical, epistemic, and political responsibilities behind such claims; deconstructing the binary between disabled and able-bodied/able-minded requires more attention to how different bodies/minds are treated differently, not less’.Footnote 36 For Kafer, claiming radical disability – or crip – relational politics, especially without a diagnosis or even symptoms of an impairment, requires a significant amount of effort and acknowledgement of the debilitating realities of one's circumstances. Especially during the early days of the COVID-19 pandemic, someone who might not have had any recognizable impairment might stake a claim to crip politics in solidarity with those for whom eugenicist pandemic policies were immediately life-threatening. By placing carers so directly in line with the neurodivergent people for whom they cared, and by foregrounding the narratives and experiences of those more ‘severely disabled’ (to return to McRuer), remote sensory-theatre productions pushed carers towards such a political claim. Rather than emphasizing the labour and challenges of caregiving in isolation from the challenges experienced by medically and eugenically vulnerable people, the claims to crip politics articulated through works like Frozen Light's podcast, Spectra's New Heights and Oily Cart's ‘uncancellable programme’ inextricably link these struggles, cripping the carer's role as both sensory-theatre audience member and more broadly within society.

All three of these companies used their platforms to amplify the perspectives of disability communities, centring these experiences in their work in unique ways, from consulting with families and neurodivergent advocates about future programming, to including narratives based on neurodivergent experiences in the work itself. In Space to Be, ‘The voice of disabled young people was integrated into the recorded soundtrack, the only performer was someone with a lived experience of disability, and the story/theme … reflect[ed] the families’ experience and stories back to them.’Footnote 37 Oily Cart's filmmaking project, Something Love, devised and created entirely by disabled and neurodivergent artists, explored autistic relationships with objects, including bendy straws, the London Tube and squishy foam hearts.

Likewise, Spectra incorporated neurodiverse ensemble members’ experiences of lockdown as a starting point for their devising work on New Heights, which was rehearsed and performed entirely over Zoom. Per DeRight, the company explored tensions between feeling ‘camouflaged inside your house and disappearing, but also going out into the world and being heard and being seen’.Footnote 38 These tensions reflected the ensemble's growing political awareness during the early stages of lockdown, when Black Lives Matter protests filled countless streets globally, and their frustrations with feeling cooped up indoors while still wanting to visibly and audibly show solidarity. Many disabled and neurodivergent people are at higher risk of severe complications from COVID, so shielding from this deadly viral risk kept them from fighting in the streets against the equally deadly risk of police brutality, which disproportionately affects disabled and neurodivergent Black people.Footnote 39 In performance, the Spectra ensemble visually blended into their lockdown locations, using matching patterned textiles on both their bodies and their walls to camouflage into their surroundings. Actors then broke the illusion by moving away from the matching backgrounds, causing their boldly patterned costumes to stand out against everyday outdoor environments.

This feeling of being overlooked or invisible while desiring to be seen encompassed the disability politics inherent in Black Lives Matter protests and an urgent need for advocacy around equitable access to medical care for disabled COVID patients, as reflected in several episodes of Frozen Light's podcast.Footnote 40 One interviewee took issue with a BBC report on high COVID-19 death rates in group homes for disabled adults, noting that the report only interviewed neurotypical staff and families of those who died, and not any of the surviving disabled residents.Footnote 41 While the practice of amplifying the perspectives of those around disabled people as opposed to disabled people themselves is certainly not new, the heightened circumstances of COVID-19 have further highlighted the necessity of self-advocacy within disability communities, a complicated need when considering non-speaking subjects and their communities.

Oily Cart's direct and extensive connections with their neurodiverse audiences allowed them to speak with families about their needs during the pandemic. Similarly, Frozen Light assembled a panel of disabled teens, adults and their families to consult on their practices moving forward; feedback from this group pushed the company to create virtual and socially distanced sensory theatre offerings during the pandemic despite the artistic directors’ initial hesitation to do so. Both companies put out calls on social media – and in Frozen Light's case, via their podcast – to interested families and asked colleagues in the sensory theatre and adjacent fields (education, advocacy, sensory play and so on) to disseminate their call for advisers from the disability community. While both companies involved disabled perspectives in their planning prior to the pandemic, these conversations were frequently facilitated by gatekeepers because of privacy legislation that does not allow schools, day centres or residential institutions to share individual audience members’ information with theatre practitioners. The additional time provided by lockdown to seek out audience members directly and the more regular availability of audience members stuck at home during lockdown to consult with the companies made increased direct collaboration easier.

This ‘cut back to the heart of it all’, as Griffiths referred to it, coincides with an embrace of slowness, an openness to change and a depth of communication. Like many other fields whose working styles shifted during lockdown to enable remote access, Oily Cart's Something Love filmmaking process opened up sensory theatre-making and filmmaking to artists whose conditions make it difficult to attend in-person rehearsals or devising sessions, something for which the disabled community has been advocating for years. Disabled and chronically ill artists are often unable to adhere to the demanding timelines of a devising process, due to unpredictable days filled with doctors’ appointments and varying degrees of pain, brain fog or other conditions that impact artists’ physical and cognitive abilities to be present at a rehearsal, requiring non-traditional timelines and a degree of flexibility that many theatre companies do not usually account for in their development processes. For Something Love, Oily Cart collaborated remotely with two disabled filmmakers who needed to self-isolate long before the pandemic forced most of the world into lockdown. Because the COVID-19 lockdown resulted in a greater degree of flexibility with regard to budgets and timelines – Oily Cart's funders opened up restricted funding to be used in whatever way the company saw fit – Griffiths was able to work with disabled practitioners to build a more flexible process, facilitating greater access for disabled artists in Oily Cart's creative process.

Conclusion

In the past four years, the flexibility and choice offered within live sensory theatre performances have expanded beyond the theatre's four walls and into institutional practices: how companies book performances, communicate with audiences, and so on. In embracing a culture of relational access, sensory theatre artists have begun to align more closely with crip politics, driven by their relationships with audience members. Disability Justice activist Mia Mingus refers to the feeling of access intimacy, which ‘moves the work of access out of the realm of only logistics and into the realm of relationships and understanding disabled people as humans, not burdens’.Footnote 42 In articulating crip theory, Robert McRuer recalls the radical activism of ‘self-identified crips in the street … taking sledgehammers to inaccessible curbs’ to highlight the fact that crip politics comes primarily out of activism rather than purely academic pursuit.Footnote 43 The advocacy of sensory theatre-makers in relational solidarity with their disabled audiences insisting on equitable access to theatre spaces echoes the crip activist with a sledgehammer, but with an emphasis on building relationships through access intimacy. As the pandemic has relegated these audiences to their homes, artists have refocused their activism to reach beyond theatre spaces and into homes and communities as well, expanding practitioners’ views of their political reach through a recognition that, in Mingus's words, ‘Disabled people's liberation cannot be boiled down to logistics.’Footnote 44

This kind and degree of care for audiences need not be limited to sensory theatre. While performing artists of all kinds were forced to reconsider how they could create work in the context of pandemic restrictions, these conversations often centred on questions of immediacy, liveness and co-presence. When accessibility entered the equation, it often referred to financial or technological access, but rarely considered disability, despite the pandemic itself being a mass-disabling event. With so many audiences newly disabled, sick and in otherwise precarious circumstances – and still so many who were disabled long before COVID – theatre artists writ large might consider dismantling rigid notions of who needs certain kinds of access, and instead deeply listen to those for whom we create our work, or indeed to those for whom we are not yet creating work. The sensory theatre field provided examples of what it might look like for artists to critically claim crip politics, severely critiquing neoliberal attacks on their audience's role in society, and intimately implicating themselves in their entire audience's well-being. We might look to these artists as we consider how – and whether – we can foster prefigurative crip communities of these kinds as we continue to live with the pandemic's aftershocks.

References

NOTES

1 Onat Gregory, Amber Garland and Lucy Garland, ‘Intro Episode (Prologue)’, The Frozen Light Podcast, 21 May 2020, at https://www.frozenlighttheatre.com/resources/podcast (accessed 2 May 2024); NHS, ‘[Withdrawn] Education, Health and Care Needs Assessments and Plans: Guidance on Temporary Legislative Changes Relating to Coronavirus (COVID-19)’, GOV.UK, at www.gov.uk/government/publications/changes-to-the-law-on-education-health-and-care-needs-assessments-and-plans-due-to-coronavirus/education-health-and-care-needs-assessments-and-plans-guidance-on-temporary-legislative-changes-relating-to-coronavirus-covid-19 (accessed 2 May 2024).

2 Rebecca Thomas, ‘Learning Disabilities Patients Told They May Be “Too Frail” for Mechanical Ventilation if They Get Covid-19’, Health Service Journal, 4 April 2020, at www.hsj.co.uk/coronavirus/learning-disabilities-patients-told-they-may-be-too-frail-for-mechanical-ventilation-if-they-get-covid-19/7027318.article (accessed 2 May 2024).

3 Robert Booth, ‘“Do Not Resuscitate” Orders Caused Potentially Avoidable Deaths, Regulator Finds’, The Guardian, 3 December 2020, at www.theguardian.com/society/2020/dec/03/do-not-resuscitate-orders-caused-potentially-avoidable-deaths-regulator-finds (accessed 3 May 2024); James Tapper, ‘Fury at “Do Not Resuscitate” Notices Given to Covid Patients with Learning Disabilities’, The Observer, 13 February 2021, at www.theguardian.com/world/2021/feb/13/new-do-not-resuscitate-orders-imposed-on-covid-19-patients-with-learning-difficulties (accessed 2 May 2024). Rebecca Thomas, ‘“Unprecedented” Number of DNR Orders for Learning Disabilities Patients’, Health Service Journal, 24 April 2020, at www.hsj.co.uk/coronavirus/unprecedented-number-of-dnr-orders-for-learning-disabilities-patients/7027480.article (accessed 3 May 2024).

4 Walker, Nick, ‘Throw Away the Master's Tools: Liberating Ourselves from the Pathology Paradigm’, in Bascom, Julia, ed., Loud Hands: Autistic People, Speaking (Washington, DC: The Autistic Self-Advocacy Network, 2012), pp. 225–37Google Scholar, here p. 228.

5 PMLD is a blanket term used in the United Kingdom's education system that can include any number of ‘severe learning difficulties’ as well as ‘physical disabilities, sensory impairment or a severe medical condition’. Dawn Male, ‘Learners with SLD and PMLD: Provision, Policy and Practice’, in Penny Lacey, Rob Ashdown, Phyllis Jones, Hazel Lawson and Michele Pipe, eds., The Routledge Companion to Severe, Profound and Multiple Learning Disabilities (London: Routledge, 2015), pp. 10–11.

6 Walker, ‘Throw Away the Master's Tools’, p. 228.

7 Mattaini, Molly, ‘Creating Autistic Space in Ability-Inclusive Sensory Theatre’, Youth Theatre Journal, 34, 1 (January 2020), pp. 4254CrossRefGoogle Scholar, here p. 43.

8 Kafer, Alison, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), p. 15Google Scholar.

9 Ibid., pp. 4, 6.

10 Dokumaci, Arseli, Activist Affordances: How Disabled People Improvise More Habitable Worlds (Durham, NC and London: Duke University Press, 2023), p. 13Google Scholar.

11 Not all sensory theatre is explicitly made for neurodiverse audiences; the genre includes work made for babies and toddlers as well as deafblind audiences and hospitalized children (who all inevitably have access needs of their own). This paper focuses on sensory theatre made specifically for neurodiverse audiences, though I shorten this to ‘sensory theatre’ throughout for the sake of brevity. For more on these other audiences see Tim Webb, Sensory Theatre: How to Make Interactive, Inclusive, Immersive Theatre for Diverse Audiences by a Founder of Oily Cart (New York: Routledge, 2022).

12 Sensory theatre remains undertheorized, but several texts provide an in-depth accounting of the genre. See Gillian Brigg, ‘Theatre for Audiences Labelled as Having Profound, Multiple and Complex Learning Disabilities: Assessing and Addressing Access to Performance’, PhD dissertation, University of Nottingham, 2013; Brown, Mark, ed., Oily Cart: All Sorts of Theatre for All Sorts of Kids (Staffordshire: Trentham Books Limited, 2012)Google Scholar; Annie Fergusson, ‘Raising the Bar through Inclusive Theatre: An Evaluation of The Isle of Brimsker by Frozen Light’ (2019), Frozen Light, at https://static1.squarespace.com/static/603f621efe2e7a54bdb65a4b/t/60416351c15d572cde01f9b5/1614898010604/Evaluation+Report+Frozen+Light.pdf (accessed 3 May 2024); Mattaini, ‘Creating Autistic Space in Ability-Inclusive Sensory Theatre’; Shaughnessy, Nicola, Applying Performance: Live Art, Socially Engaged Theatre and Affective Practice (London: Palgrave Macmillan, 2012)CrossRefGoogle Scholar; Webb, Sensory Theatre.

13 The use of ‘kinaesthetic’ in sensory theatre differs from its use in performance studies, which often focuses on kinaesthetic memory (as in writing by Susan Leigh Foster and Joseph Roach). Instead, sensory-theatre practitioners draw their use of ‘kinaesthesia’ from biological and medical sciences, and sometimes these uses break the kinaesthetic sense down further into three separate but distinct senses: proprioception (the sense of movement from one's own joints), vestibulation (the sense of balance and one's location in space), and interroception (the sense of one's own internal organs, used to perceive things like changes in temperature or hunger). For the use of these concepts specifically in sensory theatre see Brigg, ‘Theatre for Audiences Labelled as Having PMLD’; Tim Webb, ‘The History of Oily Cart’, in Brown, Oily Cart, pp. 3–10; Webb, Sensory Theatre, pp. 91–8.

14 Webb, Sensory Theatre, p. 107.

15 Fletcher-Watson, Ben, ‘Relaxed Performance: Audiences with Autism in Mainstream Theatre’, Scottish Journal of Performance, 2, 2 (2015), pp. 6189CrossRefGoogle Scholar, here p. 61.

16 Sheppard, Alice, ‘Staging Bodies, Performing Ramps: Cultural-Aesthetic Disability Technoscience’, Catalyst: Feminism, Theory, Technoscience, 5, 1 (1 April 2019), pp. 112CrossRefGoogle Scholar, here p. 2, emphasis added.

17 Brigg, ‘Theatre for Audiences Labelled as Having PMLD’, p. 73.

18 Fergusson, ‘Raising the Bar through Inclusive Theatre’, pp. 27–47; Tim Webb, ‘My Life in Cart: Writing and Directing for Oily Cart’, in Brown, Oily Cart, pp. 17–25.

19 Webb, ‘My Life in Cart’, p. 36.

20 McRuer, Robert, Crip Theory: Cultural Signs of Queerness and Disability (New York: New York University Press, 2006), pp. 30–1Google Scholar.

21 Oily Cart, ‘Being Alongside …’ (2020), Oily Cart, at www.oilycart.org.uk/resources/being-alongside (accessed 3 May 2024); Maria Varvarigou, ‘The Uncancellable Programme by Oily Cart: Sensory and Inclusive Theatre Created for and with Disabled Children, Young People and Their Families during and Post-COVID-19 Times’ (London, October 2021), Oily Cart, at www.oilycart.org.uk/wp-content/uploads/2021/10/Oily-Cart-Uncancellable-Programme-Report-Condensed-2.pdf (accessed 3 May 2024).

22 Oily Cart, Jamboree | The Sensory Sessions (Oily Cart, 2020), at https://www.youtube.com/watch?v=Nga356zsmSg (accessed 7 May 2024).

23 Oily Cart, ‘Something Love’, Oily Cart, at www.oilycart.org.uk/shows/something-love (accessed 3 May 2024).

24 Frozen Light, ‘What We Do’, Frozen Light, at www.frozenlighttheatre.com/about/whatwedo (accessed 3 May 2024).

25 Frozen Light, ‘Intro Episode: Prologue’.

26 Kate DeRight, email to the author, 16 July 2020.

27 Piepzna-Samarasinha, Leah Lakshmi, Care Work: Dreaming Disability Justice (Vancouver: Arsenal Pulp Press, 2018), p. 149Google Scholar. See also Boggs, Carl, ‘Revolutionary Process, Political Strategy, and the Dilemma of Power’, Theory and Society, 4, 3 (1977), pp. 359–93CrossRefGoogle Scholar.

28 Ellie Griffiths, quoted in Lyn Gardner, ‘“Children's Theatre Doesn't Have a Voice in the Wider Sector”’, The Stage (blog), 29 June 2020, at www.thestage.co.uk/features/features/childrens-theatre-doesnt-have-a-voice-in-the-wider-sector?fbclid=IwAR0DXjaaDgFi7ejUeepvmwv-kQ49BDyqJNARe2KLqnqi3BaXXGo1em8ErX8 (accessed 3 May 2024).

29 Oily Cart, Jamboree | The Sensory Sessions.

30 Mattaini, ‘Creating Autistic Space in Ability-Inclusive Sensory Theatre’, p. 49.

31 Shaughnessy, Applying Performance, p. 242.

32 Frozen Light, ‘Intro Episode: Prologue’.

33 Oily Cart, ‘Space to Be Audio Introduction’.

34 Ibid.

35 Varvarigou, ‘The Uncancellable Programme by Oily Cart’, p. 35.

36 Kafer, Feminist, Queer, Crip, p. 13, emphasis in original.

37 Varvarigou, ‘The Uncancellable Programme by Oily Cart’, p. 26.

38 Kate DeRight, Zoom interview with the author, 26 June 2020.

39 Abigail Abrams, ‘Black, Disabled and at Risk: The Overlooked Problem of Police Violence against Americans with Disabilities’, Time, 25 June 2020, at https://time.com/5857438/police-violence-black-disabled (accessed 3 May 2024).

40 For more on disability politics of the Black Lives Matter movement see Sami Schalk, Black Disability Politics (Durham, NC: Duke University Press, 2022).

41 Onat Gregory, Amber Garland and Lucy Garland, ‘Epilogue: Season One Roundup with Amber and Lucy’, The Frozen Light Podcast, at https://www.frozenlighttheatre.com/resources/podcast (accessed 2 May 2024).

42 Mia Mingus, ‘Access Intimacy, Interdependence and Disability Justice’, Longmore Lecture in Disability Studies, Paul K. Longmore Institute on Disability, San Francisco State University, 11 April 2017, at https://leavingevidence.wordpress.com/2017/04/12/access-intimacy-interdependence-and-disability-justice/

43 McRuer, Crip Theory, pp. 33–4.

44 Mingus, ‘Access Intimacy, Interdependence and Disability Justice’.