“We are performance philosophy problems!”^[1]: Towards an accessible performance philosophy?

Janet Gibson, Macquarie University
Kate Maguire-Rosier, University of Manchester
Tony McCaffrey, National Academy of Singing and Dramatic Art, Ara Institute, Christchurch

These two papers respond to a question directed mainly to Tony McCaffrey and some members of the Different Light Theatre Company after the Key Group Presentation ‘Collaboration, Care and Conviviality’, at the Performance Philosophy Problems Conference, 15–18 June 2022. Dave Calvert, Janet Gibson, and Kate Maguire-Rosier presented alongside McCaffrey.

Laura Cull Ó Maoilearca asked:

I wanted to ask a question—and I’m really sorry if it’s an unsafe question or if I’m asking it in an unsafe way—but I was wondering how you feel about this context, this event, and how the different contributions make each other look and feel. I’m thinking in particular about how the presentation from Different Light and their presence, their ‘withusness’ makes an academic paper look and feel, well….

I’m asking it as someone who also gives academic papers, and is struggling to think and understand why we do that, why we still do this, and how we can be together in conferences in meaningful and inclusive ways.

I’m not asking because I think I know something, but it’s impossible to get away from the resonance of that phrase of ‘nothing about us without us.’ How do we do that? What is ‘aboutness’? What is ‘withusness’? In this beautiful hybrid Zoom space that I hope we stay within as the future of conferencing?

In response to this provocation from Cull Ó Maoilearca, we present two separate offerings: the first from McCaffrey and the other from Maguire-Rosier and Gibson. McCaffrey’s contributions draw from performances by Different Light Theatre Company, a learning disabled theatre company based in Christchurch, New Zealand. These include a recorded performance presented in Helsinki accompanying a live question-and-answer session and a live performance in Auckland, New Zealand (and the ‘performances’ of travel and effort needed to get to this performance). Maguire-Rosier and Gibson’s easy read “story” introduces a dance theatre project in Australia (Days Like These) and a socially engaged theatre project in the USA (To Whom I May Concern). The aim in presenting an easy read version is to open up scholarship to people who would normally be excluded from it due to the density of academic language.

Although we keep the offerings separate, both advance the idea that learning disabled theatre and theatres where people show and share disability and diagnoses of dementia, disturb some of the key assumptions of theatre and performance studies, notably ‘withusness’ and ‘aboutness’. In terms of ‘withusness’^[2] learning disabled theatre provokes a reconsideration of long standing assumptions concerning liveness and co-presence. McCaffrey writes about Different Light performers spatially distant but temporally co-present in the lockdowns of the pandemic, audiences who are spatially distant from the actors but co-present with each other, underlining the divide between ‘them’ and ‘us’: performer and audience, non-disabled and disabled. He also reflects on theatre as (supposed) repeatable presence: what remains and what disappears in acts by actors co-present in performance that are considered ‘live’ in as much as they seek to re-present words and actions originally devised in another time and place. “Aboutness” constellates around performance studies methodologies vis a vis the supposedly neutral nature of “thick description” (Ryle in Geertz 1973, 312) and the publication of research. These issues are ones which Maguire-Rosier and Gibson take up in their easy read story along with other issues around power, crip time and care ethics.

The theatres considered in these two papers ask for a reappraisal of the very form of the conference paper and the journal article, the way these two forms relate to each other, their repercussions, and the types of audiences they are intended to address. Our joint article leans towards a different more accessible mode, with its inclusion of audio-visual material, dialogue, the voices of learning disabled performers present in the transcript and videos, and the easy-read section. Yet the article still points to its own inaccessibility with, for example, the fact that To Whom I May Concern performers were not able to check the easy read story because of the progression of their dementias. We start with McCaffrey and Different Light Theatre Company members’ contributions.

What is ‘aboutusness’? What is ‘with-and-without-us-ness’? These are questions—or problems if you like—that define, deconstruct, and drive the work of Different Light Theatre and have done so over nineteen years of practice as a learning disabled theatre company. Underlying these questions are even more fundamental considerations. How can an ‘us’ be assembled in this work? What does that ‘us’ look and feel like? What can that ‘us’ do in performance and in philosophy? What does ‘about’ mean in performance involving participants subjected to epistemic injustice in terms of their access to the systems of meaning-making, symbolism, education, and training that underpin theatrical practice? How can we make performance stuff that is ‘about’ us, where that us is meant to include and foreground the disabled participants, but whose participation is (necessarily?) filtered through non-disabled facilitation? ‘About’ suggests representation either political or aesthetic but also intimates at what goes on about and around the ‘us’ of learning disabled people and performers. This movement and activity is similar to initiatives inspired by the charity or medical models of disability that circumscribe the activities and circumvent the needs and desires of disabled people.

Current models of learning disabled theatre offer a performance ‘us’ that is negotiated between learning disabled artists and non-disabled facilitators in which the latter provide various kinds of support ranging from care to curation to allyship to creative enabling and facilitated non-disclosure (see Schmidt 2017, Maguire-Rosier and Gibson 2022). At this time a number of companies have reached a stage, after twenty or so years of practice, where they are questioning how they might develop as learning disabled companies, in terms of promoting or foregrounding the presence, agency, and autonomy of the marginalized participants. These include the online Crossing the Line Festival 2021 of European learning disabled theatre comprising performances, documentaries, and discussions on the nature of performance and the online lectures by performers from Per.Arts from Novi Sad, Serbia (Sandor 2022, Vladislavjevic 2022).

These are issues common to all manner of socially engaged or emancipatory practices. In the particular case of learning disabled theatre these issues have broadly philosophical implications in the domains of ethics—how are learning disabled artists included and treated in theatre, epistemology—how do ‘we’ know what we know about learning disability? about theatre? and even ontology?—what is the being or ‘thing’ of learning disabled theatre?

The Different Light performers are all familiar with the phrase ‘Nothing about us without us.’ Some of them are members of People First New Zealand/Nga Tangata Tuatahi who use the slogan in their logo and letterhead and for whom the phrase is a guiding principle. James Charlton (1998) traces the usage of the phrase in the disability activism movements of the 1990s from South Africa and Eastern Europe and it is often linked to the United Nations Convention on the Rights of Persons with Disabilities (2006). Through working with Different Light Theatre—in some cases for as long as nineteen years—the performers have also become familiar with questioning the particular ‘aboutness’, ‘withness’, and ‘withoutness’ of making learning disabled theatre—and the rest of the group’s activities—in ways that are broadly performance-philosophical. We are developing a methodology of performance research (see McCaffrey 2023) in which attendance at academic conferences now constitutes my presentation of a paper in apposition to (to borrow a phrase from Fred Moten) a performance by Different Light Theatre. The papers I present interact with and interweave with the group’s performance texts and vice versa. More recently the performers themselves are writing their own versions of academic papers and setting up online social media video groups to communicate amongst themselves.

Different Light Theatre responded to Cull Ó Maoilearca’s questions with a performance. This was a performance that continued to consider the questions she asked. It is perhaps more accurate to say that Different Light Theatre responded… in a manner of speaking. The activities of the group that emerged subsequent to the participation at the Helsinki conference constituted a kind of rhetorical response to the questions posed by Cull Ó Maoilearca. To compensate for the group’s participation at the Helsinki conference, which was at a distance geographically, temporally and mediated through technology, I submitted a proposal to give a paper and present a twenty-minute Different Light performance The Journeyings of Different Light at “Travelling Together” the conference of the Australasian Association for Theatre, Drama, and Performance Studies at the University of Auckland, New Zealand, 6–9 December 2022. My motivation was both to maintain a research profile for myself and the group and to afford the performers an opportunity to travel and to engage again in in-person performance and conference attendance for the first time in three years. The last time the group had performed in public was The History of Different Light in the Christchurch Arts Festival in 2019. They had also performed and participated at conferences with I Belong in the Past and the Future and the Very Now at ADSA, Auckland University of Technology in 2017 and Three Ecologies of Different Light at Performance Studies international PSi # 22 at the University of Melbourne, 2016. Travelling together—and the untogetherness of travelling whilst disabled through a world largely not designed for disabled people—has become an important form of escape from routine, group bonding, and shared experience for the company and has provided a rich source of material for subsequent performances.

Performances about and around performance

The original contribution by Different Light Theatre to the KeyGroup presentation at the Helsinki conference was a six-minute pre-recorded video sequence. This was filmed by hand with an iPhone in an empty black-box theatre. Seven members of the company were present on stage and one, Peter Rees, Zoomed in, only visible on a laptop screen. In addition, two members of the group, Josie Noble and Peter Rees took part via Zoom in the KeyGroup presentation in real time in Helsinki during which I and my co-presenters delivered papers and Noble and Rees responded in the subsequent question and answer session.

It would have been financially impossible and unacceptable in terms of the health risk to performers with compromised immunity for the group to travel from New Zealand to Finland. The participation of the Different Light performers was hybrid and mediated in various ways. Different kinds of access were both afforded and foreclosed by the particular conditions of online participation. This giving and taking of access aligns with the complexity of what ‘about us’ and ‘with and without us’ can mean in learning disabled theatre in terms of the fundamental questioning of the presence and agency of the learning disabled performers themselves. This questioning of presence, of course, intersects with what presence, participation, and action can mean in the subjunctive conceptual space of theatrical performance. Within the conventions of theatre an ‘actor’ is both the supposed subject of action, discourse, and movement and subjected to enacting pre-written scripts of speech and movement.

The Different Light presentation was my attempt to curate the performers’ responses to the conference’s call for papers and the various processes and dialogues connected with the Key Group Presentation ‘Collaboration, Care and Conviviality.’ These had been taking place since October 2020 when the Performance Philosophy Working Group had contacted me and the other co-convenors of the Performance and Disability Working Group of the International Federation for Theatre Research with a view to forming a KeyGroup at Helsinki. The performers devised the spoken text over a number of weeks, at times in a rehearsal room, at times, due to the surge of the Omicron variant in Christchurch, over Zoom. They wanted to establish quite a personal connection to the conference organisers and to the audience of attendees. They wanted to greet people in simple English and Finnish and they wanted to ‘welcome’ the Helsinki audience to Different Light, using te reo Māori.

One of the performers, Damian Bumman, has a fascination with time differences, about which the group was very much aware. He introduced the whole 90-minute Key Group presentation with his account of the time differences between Christchurch, Helsinki, and other cities. He tried to track and update these time differences minute-by-minute, but this attempt was doomed to fail as time kept moving on, and, in addition, he conceded that, in any case, his watch might be wrong…. This was a kind of questioning of the kairos—or good timing—of both theatrical performance and the delivery of academic discourse.^[3] It suggested the need to consider alternative temporalities—‘crip time‘ (McRuer) and ‘autistic rhetoric’ (Yergeau)—when seeking to include disabled artists or researchers.

Bumann also has a fascination with how things can be done—either technologically or theatrically—which had also become very familiar to the group and reference to which was included in his line in the group’s presentation: ‘How can we get to Helsinki? How can we do that?’ These were questions that acquired greater resonance for the group as the devising process continued. How can Different Light get through to an audience, what can ‘we’ get through to ‘them’? How can learning disabled artists participate in an academic conference? The group’s response to these questions was to include greetings, welcomes, and their personal responses to one of the conference organisers, Esa Kirkkopelto, a video of whom I had shown the group. We tried to include some descriptions of their recent and past experiences of living in Christchurch through earthquakes, fires and massacres, of making theatre, of life in the pandemic, of motorized wheelchair user Angelia Douglas’s particular experiences of performing ‘simple tasks’ such as getting in and out of bed, crossing the road or trying to talk to strangers. I asked the performers to ask the conference attendees their own research questions. These were: 1. What is your disability? 2. Who are your caregivers? 3. How do you get in and out of bed? 4. Why did the person in a motorized wheelchair cross the road?

It soon became apparent during this process that it would be very difficult, if not impossible, for all the Different Light performers to present this performance ‘live’ via Zoom. This was due both to the vagaries of the performers’ access to stable internet connections and, in some cases, their lack of access to devices and computers at the time of the Helsinki conference—morning in Helsinki, but evening in Christchurch.

I made the decision to submit the participation of the whole group as a pre-recorded video. This was presented as a kind of simulacrum of a live performance in a theatre, toying with different ideas of presence and performance. It included a performer isolating due to Covid but ‘present’ via Zoom. It was filmed in an empty theatre. The actors performed for the camera. The filming did, however, facilitate the performers’ various kinds of access to the kairos, as it allowed the possibility of several ‘takes’.

When we approached the ‘live’ performance for the Auckland conference I made the decision to include a straight repetition of the Helsinki performance but this time ‘live,’ in-person, IRL—‘in real life.’ This brought us up against a problem or paradox of (learning disabled) theatre. Words and actions that had been devised by the performers themselves over a period of weeks and captured in selected moments using multiple takes for the filmed contribution now needed to be learnt, re-created and re-vivified in the kairos and turn-taking or cueing of live theatre. The performers needed to be secure enough in their rememorization to ‘own’ the text. The performance needed to be repeatable enough to withstand travelling from Christchurch to Auckland and from presentation just amongst ourselves in a rehearsal room to a theatre with a live 200-person audience.

We had three performers new to the group who had never performed theatre in public before. The rest of the group, whilst experienced, had not performed live in public since 2019. In the meantime, we had been working on Zoom performance and studio-based performance research as well as online appearance at the Helsinki conference and online participation on a panel on learning disabled theatre organized by VTC Margarita in Athens that included Blue Apple (UK), Hijinx Theatre (Wales), Créahm (Belgium), and Theater HORA (Switzerland).

What had taken a day of filming to produce a six-minute performance was now taking weeks of rehearsal and felt increasingly in danger of collapsing. In addition, I made a decision to structure the Auckland performance presentation so that the first half was the presentation of the Helsinki script that was then followed by the performers needing to acknowledge that they were not in Helsinki but in Auckland and that they were not at ‘Performance Philosophy Problems’ but at ‘Travelling Together.’ After this they proceeded to continue the presentation giving an account of some of their experiences of travelling together. The text of both sections was devised by the performers and curated by me, but priority was given to the spoken text and to the rememorization and recreation of this text as an ensemble piece out of which individual voices or dialogues emerged. In many ways this strategy replicated or simulated the emphasis on spoken text and the kairos of public speaking or conventional talking heads theatre which can be such an uneasy fit for learning disabled performers. Particularly in the early stages of rehearsal, or repetition, the spoken text went around and about the performers. Despite the fact that this text had been devised with them and, what is more, from them, my curation and my decisions on turn-taking and, for want of a better word, cueing, resulted in the text washing around and about them, ever receding from them or crashing into them. The text was about them but had become inhospitably other to them, recalling Derrida’s formulation in Monolingualism of the Other: ‘I only have one language, yet it is not mine’ (1).

Then something happened: collectively we made a commitment to proceed with the Auckland performance. I raised funds from the Ara Foundation to cover the costs of flights and accommodation for eight performers. We negotiated the ‘necessary’ risk assessments for certain performers, we obtained permission for travel from performers’ EPOAs (Enduring Power of Attorney), we organized two support people to accompany the performers and me. Angelia Douglas’s support people organized a manual wheelchair—to traverse the steep gradients of busy Auckland roads rather than rely on her motorized wheelchair that was guided sometimes erratically by the little finger of her right hand and a hoist—for getting her in and out of bed. This was her first time out of the South Island of New Zealand, her first time travelling in an aeroplane. The airline managed to damage both wheelchair and hoist in ways that severely impacted her mobility and comfort. A performer tripped and fainted at Auckland airport. Another performer vomited backstage just before the performance. We experienced the ‘performances around performance’ of disability performance. There is a colloquial phrase in English ‘What a performance!’ that is used in the context that the Oxford English Dictionary defines as ‘a difficult, time-consuming or annoying action or procedure’; this is often the kind of performance that accompanies the access of disabled artists to theatrical performance.

We made a collective commitment and a mutual exchange took place. Given the performers’ difficulties with the conventional text and rehearsal methodology with which I had presented them, I assured them that I would also film the Auckland presentation in advance and if there were any issues of people being unable to perform, either through discomfort—or the very real possibility of contracting Covid or needing to isolate—that we would show this film and they could answer questions about it if they so choose. I also assured them that prior to the presentation I would introduce the performers to the audience, explaining that we had three artists new to theatrical performance and that the group itself had not performed in public for three years.

What the performers gave in this exchange was their continued commitment to achieving the rememorization and kairos of the spoken text. What they also brought to the exchange—much more importantly—was their corporeal commitment to the spoken text which rendered the spoken text something entirely different. This was not something that I directed them to do.

I can give two specific examples of this corporeal generosity and articulacy. In one of the rehearsals in Auckland, Angelia Douglas really struggled to maintain her posture due to the right arm of her manual chair being unusable as a result of being damaged in transit. Noting this, Josie Noble for large parts of the rehearsal found a way of moving and supporting Douglas’ right arm and leading her through the movements of the simple dance sequences.

Biddy Steffens, another first time theatre performer, but like Noble experienced in disability dance, found her own distinctive movement vocabulary to inform, guide, and support her spoken text—in many ways it was like she was wrapping a bow around her lines and offering them to the audience. As a response to the anxiety the performers appeared to be experiencing prior to performing ‘live’ for the first time in three years I made the decision to light the acting area and the auditorium equally to highlight the co-presence of performers and audience. I then introduced each performer individually to the audience who responded generously with applause and approbation. In response to this generosity the performers in turn re-inhabited the spoken text they had initially devised separately in lockdown.

Buoyed by the support of the audience they made offers that expressed their desire to connect with the audience. They wore the performance like a loose garment. This was the element of communication that had been missing from the online performances and participation in Helsinki and Athens and this was something that the performers discovered for themselves. I had presented the performers with my own ill-conceived and faulty intentions and methodologies that tried to shoehorn their participation into the kairos of conventional public discourse and theatricality. From this constrained form of withness, that seeks to elide difference, the performers found their own ways of being—when they were with the performance and when they were without it—to expand the aboutness of the performance to include an academic conference and to include an audience. They included us.

The Journeyings of Different Light, University of Auckland, Drama Studio, 9 December 2022

***

What is ‘withusness’? We turn now to Janet Gibson and Kate Maguire-Rosier who together tell a story.

From theatres of learning disability in New Zealand, we travel to dance and verbatim theatres of disability in Australia and dementia in America. We—Janet and Kate—want to talk about what it means to ‘show and tell’ disability and disease in rehearsals, on stage, in a conference paper at Helsinki and in this writing now. Perhaps, when disabled artists and people with dementia share their impairment in a performance, they express the ‘aboutness’ of disability and disease, for they are present. Perhaps, when we spoke about them at Helsinki and write about them here, this is a problematic ‘aboutness’ of disability which alienates them as ‘them’, not ‘us’, for they are absent. Disclosing disability and disease in dance, theatre and performance thus simultaneously includes and excludes. Disclosing means sharing information about something or someone to some other person or people. Disclosing risks othering, hurting, infantilizing. The list goes on. When thinking and writing about disability and dementia in live performance, problems come up. We retell a dialogue (Maguire-Rosier and Gibson 2022) as our response to Laura Cull Ó Maoilearca’s question about how to create ‘withusness’ between academics and performers with intellectual disability. We use easy-read. In our story, we do not use words we think could be difficult for people with perceived intellectual disability or dementia.^[4]

The story takes place in two different theatre projects. The first project with Jianna was in a dance theatre performance called Days Like These (we call it DLT from now on). It was directed by Sarah-Vyne Vassallo with her company, Murmuration. It was first shown in 2017 at Cootamundra Arts Centre, in country New South Wales, Australia. Kate worked with the company as a researcher. The second project with Therese and Julie was To Whom I May Concern® (we call it TWIMC from now on). It was directed by Maureen Matthews and presented at Hill House, Connecticut, USA in 2018. DLT had professional performers whereas TWIMC involved non-professional performers.

Chapter 1. Kate speaking:^[5] About Jianna

On one of the first days with the company, I met Jianna Georgiou, “a gorgeous young woman with Down Syndrome, who is a beautiful, quite a voluptuous dancer” and a “proud disabled woman”. Voluptuous means having lovely curvy body lines. This is how a former director of another company—Adelaide-based Restless Dance Theatre—choreographer Ingrid Voorendt once described Jianna (2010).^[6] In my notes, I write:

Jianna talks about Restless, Michelle Ryan, and Philip Channels and uses the word “whatnot”. Her eyebrows are raised, and she appears quite relaxed. Her legs are crossed, and she wears leggings and a jumper around her waist with converse shoes. Jianna thinks as she speaks, “me and Philip … last time I was with him, I had to do workshops all the time ‘cause I’m a performing artist, as always”. Sarah-Vyne prompts her, “What about your most recent work?” “Yeah”, she says, “we did a show called Touched, and we been performing, and we got new people coming, and we been performing and we been working together”. She repeats some things without seeming to realise.

While I did not use the term “Down syndrome” in my notes, I consider my word-for-word documentation of Jianna’s sometimes incorrect speech and her repetition of some words as indicators of intellectual disability. Indicators mean signals. Although they are subtle. When Jianna later shares with the group, “I don’t want to be seen as having disability. I’m just me!” my notes that ‘out’ Jianna as disabled, suddenly become a problem. Outing without permission is also a long-standing ethical problem for LGBTIQA+ communities and those connected to them. LGBTQIA+ communities are made up of people who have a range of different ways of expressing their sexual and gender preferences.

I felt I was describing in my notes but it was as an ‘outsider’. By outsider, I mean I am not disabled and do not experience disability culture like some Disabled people might. Gradually, it became clear that it was hard for me, as a nondisabled person, to address lived experiences of disability. The process of addressing Jianna’s subtle disclosure and her own conflicting anti-disclosure quickly became a problem. This dilemma involved facing and owning up to my power as a researcher ‘holding’ Jianna in my story. It involved questioning my research method. And it involved rethinking dance and disability from the perspective of a ‘proud disabled woman’—Jianna.

Chapter 2. Janet speaking: Time, repetition and ‘withusness’

“Just give me a minute,” said Therese to the theatre audience watching and listening to a production of TWIMC at Hill House. Hill House is a 61-apartment home for elderly people of low to moderate income in Connecticut, USA. Therese, one of three performers in the production, was living with primary progressive aphasia or PPA. PPA is when people have brain difficulties with language. It is a medical diagnosis given to her by her doctor who in the world she lives in is the one who has the power.

Therese’s words (“Just give me a minute”) were said over and over by all the performers in a chorus; that is, they were repeated by everyone together. Repetition works in several ways in TWIMC. Repeating words and phrases is a key part of so many of the dementia diseases. The cast’s repeated chorus, “Just give me a minute”, also creates a sense of ‘withusness’ amongst the performers. They are all in this together. But repetition is also a key part of many types of theatre. Actors in text-based productions learn their lines and repeat them, night after night, or matinee after matinee, over the length of a theatre season. Actors being able to remember the lines and repeat them is also a sign of ‘professionalism’ in many mainstage productions. Professional performers are often trained and make money from their work. Therese and the other performers read out their lines; they do not remember them as would many ‘professional’ performers.

While I was watching the rehearsal, Therese had trouble with the words in her script at various times, but no one helped her. In the script, she says, “I need for people to stick with waiting. I have lots to say”. Yet Therese says there is a fine line between people waiting and people helping her “fill in” the words. “It’s like a dance”, she says. A dance is when someone or something moves often beautifully, usually to music. There is indeed a fine line between speaking for and speaking with people with dementia or disability and what is called ‘crip time’ is usually involved. According to Alison Kafer (2013):

Crip time is flex time not just expanded but exploded; it requires reimagining our notions of what can and should happen in time or recognizing how expectations of 'how long things take' are based on very particular minds and bodies…Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds. (27)

Therese’s dance with words—hers and others—was a struggle. But it was filled in time, via others waiting, giving her silence and space to speak.

Chapter 3. Kate speaking: Aboutness

In this story about Jianna, I relive a dilemma: I am speaking on her behalf. Here is the problem of ‘aboutness’. I am speaking for and writing about Jianna. I need to be careful.

Care researcher Sara Ruddick (1998) thinks “care” can make people angry, especially disabled people. For example, Australian Royal Commissions investigating abuse both in the Disability (2019) and Aged Care (2020) sectors provide examples where care hurt people even when those people tell you to stop. In aged care and disability contexts, care can mean violence.

Jianna’s razor sharp words “I don’t want to be seen as having disability. I’m just me!” are challenging. Jianna is a person who visually discloses Down Syndrome. So why does Jianna reject disability? And how should I deal with her words as a researcher? For Jianna, being disabled means being objectified and thought about badly by others. She is not wrong! Many disabled theorists agree with Jianna! They speak about how important it is for disabled people to pass as normal to be respected. Disabled researcher Rosemarie Garland-Thomson came up with the word “normate” (Garland-Thomson 1997) to describe this non-disabled ideal. Yet Jianna, who appears disabled, like many other visually disabled people, is invisible and hypervisible at the same time, standing out easily from the crowd. Jianna has no choice but to manage the stigma of being ignored or stared at and ultimately, insulted (Goffman 2009 [1963]). Stigma means being linked to something negative. Understandably, Jianna refuses to identify as disabled. For her, being disabled means being disrespected. Jianna insists she is thought about just like everyone else.

But as the researcher, I do identify Jianna as disabled. On her website, Jianna explains she is a “dancer with exceptional talent” (Georgiou 2014). Exceptional talent means outstanding. I write about details that ‘out’ Jianna as disabled. For example, I write down word-for-word what she says, which is sometimes incorrect or repetitive. I do not do this to out her, criticise or disagree with her. Instead, I describe what she says and does in front of me in great detail. Philosopher Gilbert Ryle called this ‘thick description’ (Ryle in Geertz 1994 [1973], 312). The difference between what Jianna expressed (being disabled) versus what she said (“I don’t have a disability”) is stark. Geertz saw the difficulties of thick description. He wrote that it is the “hard surfaces of life” (Geertz 1994 [1973], 323). The difference between what Jianna expressed versus what she said presents difficulty. Geertz warned other researchers—like me—not to dismiss difficulties like this. This is why I am writing about the problem I faced and why I spoke to Janet about it.

The only visual bits of Jianna I write about are ‘her blue nail polish that matches her hair’ and “Silver rings and a necklace make me think she expresses herself as quite feminine”. I focus on parts of Jianna she expresses—her blue nails, hair, feminine, punk style, and the words she speaks. I note that Jianna does not knowingly present herself with Down syndrome.

But Jianna is not writing about her disability here. I am! My disclosing of Jianna risks disrespecting her. The researcher Stephanie Kerschbaum warns that I might be creating yet “another person’s perception of [her] disability” (2014, 57). So what should I think? What should I do? What should I write? How should I deal with my own words, which out Jianna as disabled? This does not feel like the right thing for me to do because Jianna does not wish to be regarded as disabled. There are no researchers with Down syndrome whose ideas I can borrow to help answer these questions and solve this problem.

On stage, in live performance, artists with visible disability like Jianna do not face this problem. Their bodies speak for themselves, and there is no need to declare Jianna as disabled. In this story, however, I do have this problem. This is because I am writing it. So I need to manage the word ‘disabled’. And I need to manage its stigma, this hurtful feeling that people link to a disabled person.

Chapter 4. Janet speaking: Power, care and ‘aboutusness’ in TWIMC

Six people, led by Maureen Matthews, have been meeting regularly to support each other in living with dementia, to tell their stories, create a performance script and then perform it to their communities at Hill House. I was at the rehearsal on 21 June 2018, when Julie says she “couldn’t go through it without all of you”, indicating the group and Matthews.

Accepting care is not easy for anyone brought up with the “fiction of independence” (Kittay 2011, 51). This means that people, especially those living in western societies, believe the ‘story’ that individual people can live on their own without help from anyone when in fact, all people need to rely on others, whether it is for their care needs, their food or their electricity. When diagnosed with dementia, however, depending on others becomes necessary so the behaviour of care partners or allies without dementia is crucially important. Those without dementia are often the ones involved in facilitating the ‘aboutusness’ of the theatre project with people with dementia, so they need to care well.

Matthews provides good care for her troupe at all times during the rehearsal. Maureen does not live with a diagnosis of dementia, so she could be seen to be an outsider, a ‘them’ to the ‘us’ of the group. She speaks slowly and clearly; she accepts changes to the script from her performers, helping them to control their own stories and to feel as comfortable as possible in front of an audience. She has translated Therese’s script phonetically and edited out as many three-syllable words as possible. Phonetically means that the word is written to describe the sound rather than the spelling. Maureen does this because Therese has trouble reading and saying complex words. Once in rehearsal, Therese struggles to say “independence”. Maureen suggests a “sense of self”. But Therese objects to this change. “Ok,” Maureen says, “we can work on that. We still have time”.

Only some of the group members perform the stories in public. No one is forced to perform; it is always a choice. But the performers present stories to communities in which they live, so Julie’s question before she reveals another person’s story is considerate, attentive and ethical: “can I share this?”. Julie is asking permission to disclose as she partakes in a ‘withusness’ move.

In many TWIMC productions, the medical treatment of people with dementia is looked at deeply. Julie asks doctors to “watch their language”. She is speaking back to the power held by most doctors when she was unable to do so in the first instance of her initial diagnosis. But she can do it in the performance because of the ‘withusness’ that the theatre piece enables.

There are also a few stories of the first time the performers were told by their doctors that they had dementia. Doctors 1, 2, and 3 speak to Julie and Therese without interest or kindness. The performers use the doctors’ responses and follow them with “Look at me. Talk to me”, repeated several times to ensure that the audience hears the message: the performers’ experiences with medical practitioners are all the same. All the doctors preferred not to look at or talk directly to any of the performers, directing comments to their family members instead. In this way ‘aboutness’ is continually repeated in the medical encounters and the performers are sidelined in the process.

Chapter 5. Kate speaking: On ‘withusness’

In fact, it is the Artistic Director Sarah-Vyne, who helps Jianna to share her words, “I can do anything! I don’t want to be seen as having a disability. I’m just me!” Together they create the phrase. However, Sarah-Vyne does not agree with Jianna. Sarah-Vyne who has a lived experience of invisible disability thinks being seen as having a disability is something to be proud of. Why didn’t I mention this earlier? I have, so far, said these words are Jianna’s. I have kept Sarah-Vyne’s role invisible! I did this on purpose. I did this because access for disabled people twists, turns and can make worlds of difference.

When Jianna says she wants to be seen as “just me”, she does not come up with this phrase alone. This is important. Many disability researchers, activists and artists like to talk about the agency and independence of disabled people. Agency means having the power to make your own decisions. Feminist care ethicists and some feminist disability researchers, instead, highlight relationships that enable agency and independence. I think Sarah-Vyne helped Jianna to share her ‘aboutness’ on her terms. This is very careful work by Sarah-Vyne. It is very smart work by Jianna.

Jianna, with Sarah-Vyne in the role of “creative enabler” (Achtman 2014, 36), performs Jianna’s disclosure (Kerschbaum 2014). Jianna’s agency is very important. [10] Jianna is in control, control that Sarah-Vyne supports. Echoing Eva Feder Kittay and Licia Carlson (2010), Jianna’s independence is being helped by Sarah-Vyne. Michael Achtman comments, “One of the most challenging aspects of the creative enabler role is maintaining the boundary between access support and artistic input” (2014, 36). Jianna’s disclosure creates a dilemma between independence and support (Schmidt 2017, 447). Sarah-Vyne and Jianna’s cooperative approach brings together the social model of disability (which sees independence as important) with a feminist ethics of care (which sees relationships as significant).

In creating DLT, Jianna’s disclosure of Down syndrome is performed by her presence; yet, when she speaks, she resists the label “disability”. As Jianna realises, in disclosing, she risks linking herself to oppressive ideas of disability. Even though Sarah-Vyne disagrees that being disabled is bad, she helps Jianna create her anti-disclosure. And here, finally, is the bittersweet depths of ‘withusness’. Bittersweet meets happily and sadly moving at the same time. Jianna’s disclosure uncovers the puzzle people with visible disability face—to disclose or not to disclose? It also reveals Sarah-Vyne’s different attitude. This ‘withusness’ is what disability researcher Christine Kelly describes as “accessible care” (2011). She sees care as, importantly, unstable.

Chapter 6. Janet and Kate—Us—speaking:

This story of ‘withusness’ is hard to tell. For Tony and A Different Light company members, ‘withusness’ means performers with intellectual disability, including an audience. For us, Janet and Kate, our story finds nuance in ‘withusness’, for it will always exclude. Nuance means fine details and subtle differences. Our conversation starts to deepen the tricky story of ‘withusness’ by thinking about showing and telling disability and dementia in performance. We began by thinking aboutness as different from ‘withusness’. We ended by finding what ‘withusness’ might mean. For Sarah-Vyne ‘withusness’ means respecting Jianna’s decision to say disability does not identify her. For Therese and Julie, ‘withusness’ means the performers working together to support their disclosure and asking permission to share the stories of others not present in the performance. Disability and dementia shows how much we depend on those around us when we make theatre and dance together. We hope you can depend on this story in turn. You might even like to share something too.

Notes

^[1] Josie Noble, Different Light Theatre, spoken in the video cited in the article.

^[2] The authors’ discussion about the terms is included here as an example of a caring, ‘withness’ exchange during our collaboration on this article.

Kate: should ‘withness’ be changed to ‘withusness’ throughout?

Janet: I think we need to resolve this issue for more continuity throughout and maybe have a definition of the terms in the intro or at least if not a definition a framing of them as they are used or problematised in the article.

Kate: Does ‘aboutness’ perhaps question who has power? Is it therefore about political/politicising in nature? Or does it point to a tension of who is speaking for whom? In contrast, is ‘withusness’ more relational? Is it therefore about a duty/ethic of care for another? Or does it point to the tension of being together as a community? Your thoughts?

Tony: My thoughts on ‘aboutness’ and ‘withusness’ are that these are not technical terms. From my perspective—and it is just my perspective—Laura brought them up in the Helsinki Q&A and in my piece of writing I riff on what they might mean. I think they can each acquire different meanings which makes them interesting for me and opens them up for ‘philosophical’ questioning. Kate’s definitions are interesting and obviously relevant but for me only part of the story of the meanings that can accrue around ‘aboutness’ and ‘withusness’. They are deliberately vague and imprecise and open to interpretation. I hope this helps. It is almost as if we could include this discussion as part of or a footnote of the piece itself. Your thoughts?

^[3] Kairos is a Greek term for time as in the good timing of public speech, and by extension performance, as opposed to chronos or sequential time. Kairos is a term that has been extensively discussed in relation to the different temporality of autistic speech and behaviour in Yergeau (2017) and by Lipari (2021) who considers how kairos relates to akroasis in an ethical practice of ‘listening others into speech.’ This is an approach to the negotiation of communication which I find very useful in my ongoing collaboration with the learning disabled artists of Different Light.

^[4] In doing this, we are following the example of UK Department for Levelling Up, Housing & Communities (2022).

^[5] We use the word ‘speaking’ although we are in fact writing, as this convention is used in discussions between participants at the IFTR Performance and Disability Working Group to make it easier for people with impaired vision to know when a new speaker is beginning their contribution.

^[6] The oppression experienced by disabled people is most commonly referred to as “ableism” (for discussion, see Campbell 2012, 212–28). In the case of Jianna who lives with Down syndrome, and in turn, participants living with dementia, “cognitive ableism” (Carlson 2001) comes into play.

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Biographies

Janet Gibson is a theatre and performance studies scholar interested in socially engaged theatre involving older people with dementia. She is the author of Dementia, Narrative and Performance: Staging Reality, Reimagining Identities (Palgrave Macmillan 2020) and has contributed to Research in Drama Education: Journal of Applied Theatre and Performance and to Contemporary Narratives of Ageing, Illness, Care (Routledge 2022). She is a co-convenor of the Performance, Health and Creative Care (PHCC) Working Group of the Australasian Association for Theatre, Drama and Performance Studies, (ADSA) which is the peak academic association promoting the study of drama in any performing medium throughout the region. She is also a founding member of the Sydney Care Lab, which is in association with the Manchester Care Lab, UK. She is a trained actor (Uta Hagen, HB Studios, New York) who performed in Women in Beckett at Theater for the New City, New York, under the direction of Moisés Kaufman (of The Laramie Project). A certified facilitator for TimeSlips, a creative expression program, Janet is currently collaborating with Dr Meg Mumford on the application of a care aesthetics lens to a TimeSlips program in a Sydney residential aged care home.

Tony McCaffrey is a Lecturer at the National Academy of Singing and Dramatic Art, Christchurch, Aotearoa/New Zealand and for 20 years has been the Artistic Director of Different Light Theatre, an ensemble of learning disabled artists. He is co-convenor of the Performance and Disability Working Group of the International Federation for Theatre Research. He is the author of Incapacity and Theatricality: Politics and Aesthetics in Theatre Involving Actors with Intellectual Disabilities (Routledge 2019) and Giving and Taking Voice in Learning Disabled Theatre (Routledge 2023). He has contributed articles to Theatre Research International, Global Performance Studies, and The Journal of Dramatic Theory and Criticism. He has recently contributed chapters to Out of Time? Temporality in Disability Performance (Routledge 2023), How Does Disability Performance Travel? Access Arts and Internationalization (Routledge 2024), and The Cambridge Guide to Mixed Methods Research in Theatre and Performance Studies (Cambridge University Press 2024). Different Light have presented self-devised performances in New Zealand, Australia, the USA, and the UK and are currently engaged in a collaboration on Ancient Greek Theatre and Learning Disability with companies in Australia, Belgium, Greece, UK, Switzerland, and Poland.

Kate Maguire-Rosier is a dance and disability researcher curious about care, robots and dance theatre. She is currently Postdoctoral Research Associate in the Drama Department at the University of Manchester where she works on a UK Arts and Humanities Research Council-funded project, Care Aesthetics Research Exploration (CARE) with colleagues Dr Réka Polonyi and Prof James Thompson. On the CARE project, she enjoys being part of an interdisciplinary team of researchers in arts and health who specialize in dementia and critical (and creative!) ageing studies. Kate is a dancer. She is also a teacher and Associate Fellow in Advance Higher Education (formerly, UK Higher Education Academy). But above all, Kate is interested in building bridges between what happens inside universities (research) and what happens outside (industry and public involvement). She is co-director of The Care Lab (UK, https://www.thecarelab.org.uk/) and founding member of Sydney Care Lab (Australia, https://www.sydneycarelab.org/ ). Her writing has been published in How Does Disability Performance Travel? Access, Art, and Internationalization (Routledge 2024), The Drama Review, Performance Research, Frontiers, The Conversation (Australia), Theatre Research International, Critical Dialogues, aDm Magazine and on her blog (mrkategoestothetheatre.wordpress.com). She is also the proud human to a gorgeous big dog called Pumba.

© 2024 Janet Gibson, Kate Maguire-Rosier, and Tony McCaffrey

This work is licensed under a Creative Commons Attribution 4.0 International License.