‘Who Cares?’ Exposing the Critical Paradox of Care in Performances of Disability and Disease Through the Lens of Disclosure

Abstract

Care needs to be taken in the process of making – and writing about – dance, theatre, and performance. Performers with disability and dementia highlight this need because the stakes are raised. Yet a ‘sticky’ paradox emerges. Disability rights activists are critical of care to the point of dangerous devaluation. ‘Who cares?’ They may say, in all earnestness. Yet, we must listen because of the history of abuse, neglect, and oppression of disabled people and people with dementia in the name of care, which continues today.

Mobilising disability scholarship and disability performance theory Maguire-Rosier and Gibson critique unproblematised care theories and disability rights discourses, which are largely anti-care, pressing their argument through an investigation of acts of disclosure – both on stage and off – by artists with disability and performers living with dementia. These acts interrogate medical narratives of disability and disease, giving rise to a tension – a resistance to, and an embrace of, ‘care’. Maguire-Rosier presses her argument by examining Sydney-based Murmuration’s creative development of dance theatre work, Days Like These (2017), calling for acts of disclosure to be understood as performances of care. Gibson responds to Maguire-Rosier ‘s concerns by examining To Whom I May Concern® (2018) at Hill House Connecticut, where people with dementia, who do not necessarily see themselves as disabled, or ‘sufferers’ as they are frequently labelled in the media, enact disclosure as creative expression. The article presents the contradictions inherent to care epitomised not least in the dilemma of the authors disclosing on behalf of performance practitioners in this research.

Figure 1. Jianna Georgiou dancing in a black dress against a black background, Restless Dance Theatre, Seeing Through Darkness, 23 December 2020. Photo Shane Reid

While care needs to be taken in any process of making – and writing about – dance, theatre and performance, when people with disability or dementia are the performers, the stakes are raised, with more ‘care’ (arguably) necessitated. However, a ‘sticky’ paradox emerges. Disability rights activists are critical of care to the point of dangerous devaluation because of the history of abuse, neglect and oppression of disabled people, in the name of care, which continues today.

In this article, we, the authors, mobilize feminist disability scholarship and disability performance theory in a critique of unproblematized care theories and disability rights discourses, the latter being largely anti-care. We press our critiques through an investigation of disclosure – both on stage and off – by artists with disability and performers living with dementia. Ideas around disclosure of disability and disease prove to be a particularly curious intersection mainly because they necessitate acts of care. We discuss acts of disclosure in reference to two theatre projects, with Kate’s theatre project having more aesthetic designs than Janet’s. Kate focuses on Sydney-based company Murmuration’s creative development Days Like These (hereafter DLT) directed by Sarah-Vyne Vassallo, which premiered in 2017 at The Arts Centre Cootamundra in regional New South Wales; Janet focuses on an interactive American-based applied theatre modality, To Whom I May Concern® (hereafter TWIMC), directed by Maureen Matthews and performed at Hill House, Connecticut, USA in 2018.¹

We both used ethnographic methods (that is, writing fieldnotes and recording conversations) to document the rehearsal and performance processes we observed, with these methods generating many issues around what research means in these contexts, some of which we consider here, though not in great detail, due to the scope of this article. Our argument is that acts of disclosing disability and dementia interrogate medical narratives and, curiously, reject and yet implore a need for ‘care’, a word, concept and practice that in disability spaces does not rest comfortably.²

We have three aims in this article: to problematize the larger context of performance and disclosure, that is beyond the stage into everyday life; to elucidate the complex pressures to disclose but also, not to disclose; and to advance a need for care – and its politics – in acts of disclosing disability and disease specifically, and in performance contexts more generally. To pursue these aims, we first explore disclosure and the dilemmas it occasions in relation to apparent and hidden disability. We then move to briefly examine certain methodological questions that arose for both of us as researchers in our specific contexts. After that, we explain why care is needed in acts of disclosure and interrogate support structures in relation to dementia. We thus offer up the problems as much as the possibilities of disability and dementia disclosure in the context of performance, and their relationship to care. We do this through a dialogic textual ‘performance’ that is based on the caring relations we have forged between ourselves as researchers.

WHAT IS DISABILITY DISCLOSURE? PERFORMANCE AS DISCLOSURE

Kate: Our dialogue focuses on Australian and American artistic work. Disclosure is a relatively new idea in the context of disability performance and completely new in relation to Australian work. The current political call for Australian disabled artists to lead their work rather than co-create or be led by non-disabled peers is a curious point of departure because it also represents a call to disclose.

Acts of disclosing disability extend performance theorist Carrie Sandahl’s idea that the body can ‘perform disability’ (1999: 22). Stephanie Kerschbaum writes ‘physical presence is one way that disclosure is performed’ (2014: 57). For others living with, for example, non-apparent or ‘mental disabilities’ (after Price 2011: 8-9), disclosing can be an act of choice and, in these instances, as Ellen Samuels notes, disclosure will likely function ‘interactionally, with the fear of negative reception or misrecognition often stifling the impulse to disclose’ (2017: 17). These people may desire to distance themselves from ideas of victimhood, or they might not see themselves as disabled, along with its many populist connotations of suffering.

In the disability arts sector, there is increasing pressure for ‘disability-led’ theatre practice (Hadley and Caines 2009; King 2016; Kuppers 2009; Marsh 2016a, 2016b, 2017), which can be interpreted as an invitation to disclose, that is, to share personal ‘relationships to disability’ as Corbett Joan O’Toole (2013) puts it. On the one hand, what is at stake? For example, Alison Kafer (2016: 10-12) points out, in the context of trauma survivors, that disclosures can be unsafe: an artist with hidden disability may articulate an experience about which ‘words cannot be seen as innocent’ (Burtsow 2013: 81). On the other hand, what is made possible? But first, what do acts of disclosure consist of?

At an Australia Council panel in May 2019 titled ‘The Last Avant-Garde’, disabled artist Kate Hood (2019) stated ‘more of a conversation needs to be had about disclosure with artists with disability’.³ Indeed, the Australian Network on Disability (AND) declares it is

moving away from the traditional terminology of ‘disclosure of disability’ (in a workplace setting), as it can make it seem like the person is divulging a secret. We avoid ‘declaration of disability’ for similar reasons. We also tend to steer clear of the increasingly popular phrase ‘identify as a person with disability’, as this brings with it a whole range of other issues around identity and belonging. Someone may have impairment. but still not identify as a person with disability. We now tend to use the simple phrase ‘choose to share information about their disability/impairment’. (AND n. d.)

This commentary foreshadows the dire social consequences of expressing any affinity to disability. But it also suggests that disclosure has become another dirty word. Like disability, it is tarnished by social stigma including lack, pity or inability.

In other words, to verbally disclose effects an ‘illocutionary force’ (Austin 1962). Austin coined the term ‘performative’ as words that institute performances in the social world, including contractual or declaratory utterances (respectively, such as when a person takes a matrimonial vow or when a president proclaims war on another nation). This idea was later taken up by Judith Butler (1988) to offer an account of how the norms that govern speech come to occupy the body. Austin’s ‘illocutionary force’ is one that, with disability, risks doing harm.

Janet: But any dialogue on disability disclosure necessitates conversations around the incredibly diverse landscape that disability occupies, which usually doesn’t include dementia. They are ‘like planets spinning on different axes’ (Shakespeare et al. 2017: 1). In disability sectors, dementia is typically perceived as a health issue; in dementia sectors, people with dementia do not usually think of themselves as disabled.

However – as with disability – rights-based discourses are now emerging. Christine Bryden titled her book Nothing about Us, without Us! 20 years of dementia advocacy (2016) directly referencing James Charlton’s 1988 book of the same name (charting the history of disability rights activism in the USA). But any dialogue on dementia or disability disclosure also demands a broad look at what constitutes acts of disclosure per se, whether in the performance of everyday life or within a theatrical frame. This focus points towards the iterative, contextual, interactive and contingent nature of disability disclosure. Whether actual or potential, the disclosure of disability

is not a singular event, not a once and for all action but, rather, an ongoing process of continuously, in a variety of settings and contexts, performing and negotiating disability awareness and perceptibility. (Kerschbaum et al. 2017: 1)

Kate: For others again, disclosure challenges embedded ableism.⁴ In 2023, the concept of disability unearths a paradox. On the one hand, we base our notion of disability largely upon the ‘social model of disability’ (Oliver 1990) whereby physical, attitudinal, programmatic and other barriers to life participation constitute ‘disability’ as a ‘contextual event’ (Redmayne 2019) while an individual’s private, personal experience constitutes ‘impairment’. Liz Crow perceives, ‘impairment is the functional limitation(s) which affects a person’s body, [while] disability is the loss or limitation of opportunities resulting from direct and indirect discrimination’ (1996: 208). Carol Thomas productively complicates ‘impairment’ further: ‘the fact that I cannot hold a spoon or saucepan in my left hand is an effect of my impairment and does not constitute disability’ (1999: 43).

Perhaps with this distinction, there is a tendency among our academic peers to use euphemisms like ‘differently-abled’ in seemingly polite preference to ‘disabled’. This is in stark contrast to American disability activist Lawrence Carter-Long’s #SayTheWord campaign launched in late 2016 (see King 2016) and to common parlance in the field of Disability Studies and in the Australian Disability Arts sector.

Janet: Yet, on the other hand, the word ‘disability’ has a tainted etymological history: the Latin origin of ‘dis’ means to ‘pull asunder’. Additionally, ‘to disable’ means ‘to deprive of ability’ and ‘to pronounce incapable; (hence) to disparage, depreciate, detract from, belittle’ (Oxford English Dictionary 2008). The term is likewise encumbered by a history of the devaluation of people with disability. There are also active debates in disability circles around whether disability should be referenced as person-led (that is, ‘person with a disability’) or identity-led (for example, ‘disabled person’). The word ‘disability’ should clearly not be used without consideration. It is a highly complex concept carrying oppressive and abusive histories but one that is also being actively reclaimed by disability communities at present.

In addition, there exists a very real hierarchy of disability at the bottom of which sits intellectual disability (Deal 2003) and other cognitive impairments such as various dementia conditions, that is, if dementia is accepted as a disability. Where disability rights ‘recognize some disabilities at the expense of other disabilities’ (Puar 2017: 2) what David Mitchell with Sharon Snyder (2015) have coined the ‘biopolitics of disability’, other classifications of marginalization must be invoked. Intersectionality (Crenshaw 1989) reminds us of the importance of being sensitive to the specificity of lived experience, that is, where ‘gender folds into disability, disability wraps around class, class strains against race, race snarls into sexuality, sexuality hangs onto gender, all of it finally piling into our bodies’ (Clare 2003: n.p.). However, discussions about intersectionality in Dementia Studies are only just beginning to emerge (see Bartlett and O’Connor 2010). But any dialogue on disability disclosure in the context of research requires consideration given the dilemmas that arise in the rehearsal room for the researcher who also aims to be a disability ally.

REFLECTIONS ON RESEARCH AND CARE

Kate: Early on, working with Murmuration as a researcher, I met Jianna Georgiou, ‘a gorgeous young woman with Down Syndrome, who is a beautiful, quite voluptuous dancer’ and a ‘proud disabled woman’ as described by former Adelaidebased Restless choreographer Ingrid Voorendt (2010).⁵ I write in my field notes:

Jianna talks about Restless, Michelle Ryan, Philip Channells 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. She is thinking 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 never use the term ‘Down syndrome’ in my fieldnotes, I consider my verbatim record of her grammatically incorrect speech, and my highlighting her repetition in her introduction to the group, as indicators of her intellectual disability, although subtle. What becomes an iterative representation of Jianna in my fieldnotes becomes problematic when she later asserts, ‘I don’t want to be seen as having disability. I’m just me!’

It might be suggested that I was merely describing, as I felt I was doing and intended to do, but I was describing as an ‘outsider’, according to Merton’s (1972) outsider–insider continuum. I had ‘insider’ knowledge (Merton 1972 :12) insofar as I am a trained dancer but have also had experience working in rehearsal contexts as a director and a director’s assistant for student, community and independent productions. Yet in the context of rehearsals, I acknowledge that researchers such as myself are considered ‘outsiders’ (McAuley 2012: 229). Gradually, it became apparent that I was ill-equipped as a researcher to address disability-specific acts, events and attitudes. This is largely because at that time I was a newcomer to the disability community (or more aptly ‘communities’) and I do not have lived experience of disability. The process of addressing these acts of disclosure became as much an exercise of addressing attendant disability politics as of critically reviewing my own research methodologies, not to mention recalibrating a default view of a dance world that privileges the normatively embodied and ‘enminded’ – using Petra Kuppers’ term – dancing figure (2014: 43–4).

My field notes strongly identify Jianna as disabled. Publicly, Jianna promotes herself as a ‘dancer with exceptional talent’ (Georgiou 2014). I document particular idiosyncrasies that risk unduly infantilizing this artist. Jianna is indirectly disclosed to some degree in my verbatim documentation of her words wrought with grammatical mistakes. I deliberately did write her words, capturing her exact phrases to reflect her word choices, sentence structure and so on. But I did not do this with the intention of revealing her disability but rather to describe and capture as best as I could the action, including her speech, as it passed in the moment. These observations are indeed the ‘hard surfaces of life’ that Geertz (1994 [1973]: 323) warns ethnographers not to overlook in his formative essay on ‘thick description’.

The only visual aspects I described in my field notes are ‘her blue nail polish that matches her hair’ and, ‘Silver rings and a necklace make me think she expresses herself as quite feminine.’ Rather than describing physical features, I focus on those that Jianna actively produces – her blue nails, hair, feminine almost punk style and the words she utters. Most certainly, she did not consciously present herself with Down syndrome explicitly or verbally.

But Jianna is not writing about her disability here – I am. My disclosure of Jianna becomes ‘another person’s perception of [her] disability’ (Kerschbaum 2014: 57). How do I analyse my fieldnotes considering her comment about not being regarded as disabled? My additional challenge is that there are no academic scholars with Down syndrome and so there are no self-reflexive self-disclosures of artists with Down syndrome to inform my account. In live performance, artists with visible disability do not necessarily need to navigate such contested terrain because their bodies speak for themselves. In academic scholarship, however, I must.

SUPPORTING DISCLOSURE

Kate: I have, so far, attributed Jianna’s disclosure to herself. In fact, it is artistic director Sarah-Vyne who assists Jianna to share something that is nonetheless her own conception; together they produce the phrase, ‘I can do anything! I don’t want to be seen as having a disability. I’m just me!’ Why didn’t I mention Sarah-Vyne’s role earlier? Why have I incidentally (albeit deliberately) sustained this invisibility? Here, now, access muddies things.

When Jianna explains that she wishes to be seen as ‘just me’, she does not come up with this phrase on her own, which is significant. While many disability theorists, activists and artists alike wish to foreground qualities of agency, autonomy and independence, feminist care ethicists, and disability feminists in particular, instead underline the interrelational dynamics that enable and sustain agency and autonomy. I argue here that directing artists – most notably Sarah-Vyne – perform specific theatrical labour that is both professional training and care work. The notion of ‘professional’ is vexed in the disability arts sector because it implies that ‘artists with disability’ are not professional. The distinction between amateur and professional is not binaristic, in our view, but a spectrum, as Bree Hadley (2017) agrees. Yet, in view of Matt Fraser’s critique of disabled artists doing bad art to the detriment of the sector, it can be argued that a distinction is necessary. He states, ‘I know of no other group that so allow untalented people onto a public stage to entertain and indulge their inability to perform’ (as cited in Hargrave 2015: 39). Former artistic director of Ruckus (now disbanded) Alison Richardson (2017) identifies a critical lack of such professional training opportunities for artists with disability in Australia after conducting industry research on British models of performance training for adults with intellectual disability.

Jianna with Sarah-Vyne in the role of ‘creative enabler’ (Achtman 2014: 36) enacts a ‘performance of disclosure’ (Kerschbaum 2014) insofar as Jianna’s rhetorical agency is prioritized.6 Jianna is in control, control that is facilitated by Sarah-Vyne. In Eva Feder Kittay and Licia Carlson’s terms (2010), Jianna’s autonomy is being assisted 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). I propose that this facilitated disclosure brings forth a negotiation ‘between autonomy and supporting structures’ (Schmidt 2017: 447) and thus, a very careful approach in the spirit not only of the social model of disability, but by extension, of a feminist ethics of care that embraces rights discourses as promoted by Joan Tronto (1993), Jenny Morris (2001) or Christine Kelly (2011).

The myth of autonomy, as Kittay would put it, is upheld by socio-political structures that encourage ideals of efficiency, independence and even rights. Interdependency, on the other hand, suggests that autonomy is only possible insofar as it is contingent on relations with others and, crucially, their support. This article sets forth the notion of autonomy as indeed always supported and that disabled artists and people with dementia – in giving and receiving this support as acts of care – highlight this revelation. In writing this article, I am forced to relive a dilemma: yet again, I am speaking about or on behalf of artists with disability as a non-disabled researcher.7 I needed and still need to be careful.

Granted, all artists, arts workers and audience members whose words I have cited gave me permission to do so. Making informed consent accessible was not a straightforward task: I had to create forms in easy read to give access to artists with intellectual disability. This follows Matt Hargrave’s (2015) pioneering step to supplement an academic book with an easy read version. I highlight these sensitivities and extra steps because they involve a certain amount of care, perhaps even an ‘ethics of care’ (Gilligan 1982; Noddings 1984).

Yet, care theorist Sara Ruddick (1998) believes, as I do, that ‘care’ is provocative, especially when viewed through a disability lens. Jianna’s incisive words ‘I don’t want to be seen as having disability. I’m just me!’ were challenging for me to digest. What did they mean for Jianna, a person who discloses by way of her physical presence? In turn, what did it mean for me to represent this default disclosure on her behalf in my writing? Clearly, for Jianna, disabled identity contained a static, pathological or voyeuristic presentation in the world. It is important to recognize that not passing as ‘normate’ (Garland-Thomson 1997), where individuals do not pass as ‘ablebodied’, means they are rendered simultaneously invisible, as Sandahl (2003: 30) puts it, and hypervisible, as Butler (1993), Garland-Thomson (1997) and Sandahl (2003) see it. Here, the consequent demand of ‘stigma management’ (Goffman 2009 [1963]) persists for those with visible disability. Jianna managed an unwanted label with resistance, negating so-called ‘caring’ responses brimming with pity and tragedy.

Significantly, while I wrestle with Jianna’s words and perspective here, I am ultimately guided by Arseli Dokumaci’s notion of ‘disability as method’ where ‘I take my collaborators’ critical insights and creative workarounds as ways of tracing what otherwise disappears in everydayness, that is, an ableist habitus’ (2018). In other words, I am guided by Jianna and Sarah-Vyne’s understanding of what it is they are doing and why.

PERFORMANCE, DISCLOSURE AND CARE INTWIMC

Janet: People living with an early diagnosis of dementia may pass as ‘normate’ in the world or when they appear on stage but it is when they work with words in performance that their impairments usually become apparent. ‘Coming out’ as Ellen Samuels puts it (2017) or disclosing as a person with dementia and having pride in speaking out about one’s experiences is a key feature of TWIMC, a kind of socially engaged readers’ theatre, operating both in virtual and live performance spaces. TWIMC draws on the everyday experiences of people living with a dementia diagnosis (usually in the early ‘stages’), challenging deficit views of the condition and interrogating medical power and abuse. Writing and researching TWIMC over a period of several years, I ended up in Connecticut on 21 June 2018 at a dress rehearsal for, and production of, TWIMC based on participants’ stories scripted by Maureen Matthews, its founding director. (Matthews does not have dementia but is of an age where dementia could eventuate.) Positioning myself as the daughter of a mother who had lived with dementia, I was warmly welcomed into the rehearsal room, as an ‘insider’ of sorts.

In TWIMC, people with dementia first meet in a support group facilitated by Matthews. They tell their stories to one another and, in this way, connect in a ‘reciprocal dynamics of care [which is] operative and palpable’, referencing Dave Calvert’s ‘convivial theatre’ (2020: 86). But not all the group members move on to perform their stories in public. Of the six people living with dementia and one with a stroke who were in the rehearsal space that afternoon, only three were performing that night: Therese, Julie and David. Before the rehearsal I attended began, Julie said that she ‘couldn’t go through it without all of you’ as the experience of living in the early stages of a dementia diagnosis is often isolating and embarrassing.

Perhaps because the TWIMC performers do publicly disclose, often to communities in which they live, disclosure did not feature as an issue for me when watching the rehearsal. I was aware of asking for permission from everyone to voice record the final rehearsal and performance. I also use the performers’ real first names here because they gave me permission to do so when I was introduced to them at the rehearsal. In fact, when I first met Matthews, she said she needed ‘someone like me as I have been remiss in publishing and writing about this’. Disclosure does feature once in the final script as a deliberative act of care. Before one of the performers discloses a vignette from another performer’s life she asks, ‘Can I share this?’ In this case through this question, the ethics of sharing is underscored in the script but in other situations and for other participants in the whole TWIMC process, disclosure for them could feel like they were being exhibited, in a show of difference. The choice to perform is a crucial element for all TWIMC participants.

But, on the whole, disclosure is a calculated act for the performers. They want to remove the stigma surrounding an early diagnosis and they do this by sharing the impact it has had on their lives. In this sense, disclosure is not made into an issue as it is enacted by the performers as a political act of ‘coming out’, in the lineage of the disability activism encouraged by scholars like O’Toole (2013).

In many TWIMC productions, medical discourse and behaviours are challenged. This production is no different as it wrangles with stigmatizing medical labels, especially the word ‘dementia’, which the performers hate, referencing Jiana’s dislike of the term ‘disability’ discussed earlier. Julie has Alzheimer’s disease (memory problems and erratic speech patterns) and her lines include a plea to medical practitioners to ‘watch their language’. In the production, several stories of the initial diagnostic event feature along with the de-identified characters of Doctors 1, 2, and 3 whose responses to Julie and Therese (living with primary progressive aphasia or PPA, that is, difficulties with language) range from uninterested to brutal. The performers use the doctors’ responses to lead into the striking line, ‘Look at me. Talk to me’ repeated several times to cement the message that their experiences with medical practitioners are uniform: all the doctors preferred not to look at or talk directly to any of the performers, directing comments to their family members instead. The doctors are probably operating out of the best intentions of care conceived of as minimizing risk, yet in ‘caring for’ (Kelly 2011: 578) they are not affording their patients any respect.

But what Kittay might call ‘good care’ (1999, 2011) exists in the interactions I witness between Matthews and her troupe, and between the participants themselves, both in the rehearsal and in the performance. This care facilitates the ‘creative enablement’ addressed earlier by Kate. For example, when the performers are introducing themselves to me, many of them forget what their diagnosis is. When it comes to Therese’s turn, she asks Maureen, ‘What is it [again] hon(ey)?’; Maureen replies, ‘PPA. That’s the easiest way for you to say it.’

At the start of the rehearsal, Maureen speaks slowly and clearly. During the rehearsal, she accepts and makes suggested amendments to the script even at this late stage: the rehearsal starts at 1 p.m. in the afternoon and the performance at 5.30 p.m. Making such late changes to a script is not usual in professional productions. Changing the script is all about care. It facilitates the performers taking control of their own stories. It helps them feel as comfortable as possible when they are in front of an audience. Matthews had to navigate a fine line between changing the script for some performers without creating issues for the other performers in terms of script cues.

In each iteration of TWIMC, previous stories are utilized as they are considered powerful accounts of living with dementia. Sometimes these stories are from people now dead or no longer able to read. In these instances, when the performers acknowledge the original storytellers, it is an ethical act of ‘good care’, but what is also being acknowledged is the continuing importance of lived experience, which has a political edge. In the Hill House show, there was an example of this in the use of Joyce’s story. Joyce was not one of the performers in this show, nor was she in one of the support groups out of which the Hill House performers emerged. Joyce’s social security card was stolen, and the thief used it to gain a place on the disability transport service. When Joyce called the bus company to say that she was ready to be picked up, she was told that she was already on the bus, adding a new picture to the concept of identity theft. In the Hill House production, Joyce’s story was told with the current group adding the rider ‘sometimes you just have to laugh’.

Another example of ‘good care’ is that Maureen has already translated Therese’s script phonetically and edited out as many three-syllable words as she can because Therese has difficulties with recognizing and pronouncing complex words. At one stage in the rehearsal, Therese struggles to say the words ‘confidence’ and ‘independence’. Maureen suggests a ‘sense of self’ instead. But Therese objects to this change. ‘OK’, Maureen says, ‘we can work on that. We still have time.’

When the rehearsal stalls at various points as Therese deciphers other words in her script, no one rushes in to help her. At one stage she says, ‘I need for people to stick with waiting. I have lots to say.’ The group manifests her wishes: her words ‘just give me a minute’ have become part of a Greek chorus repetition effect throughout. Yet Therese concedes there is a fine line between people waiting and people helping her ‘fill in’ the words. ‘It’s like a dance,’ she says. All of the above are examples of conviviality in Puar’s dispensation: ‘the attitude of care as fluid and mutual, constantly adjusting to the fluctuating vulnerabilities of interdependent people’ (2009: 169).

This rehearsal and its later performance were probably Therese’s last ones given her struggle with words. TWIMC paradoxically relies on supporting people through words. In this reliance on narrative, it could be argued that the modality lacks care for Therese. However, as a counter to this argument, I offer words from Matthews: ‘Therese has a lot to say and wants to say it as long as she is able’ and from Therese in the performance: ‘I love to talk.’

Generally, in this rehearsal, and later in the performance, I observed Maureen’s willingness to accommodate the needs of her performers as ‘good care’. She stayed on the side-lines during the performance and, if asked, was willing to help the performers ‘sustaining [them] as performers … open and responsive to [their] needs … in the live event’ (Calvert 2020: 94). Accepting care is not easy for anyone brought up with the fiction of independence (Kittay 2011: 51). When diagnosed with dementia, however, interdependence facilitates and maintains autonomy.

CONCLUSION

When Kate shared the epistemological dilemmas and methodological concerns she faced in her research in integrated dance theatre with Janet, a researcher with interests in performance and dementia, vigorous discussions about disclosure in and as performance ensued. Both authors evaluated ideas about what acts of disclosure consist of in terms of what is closed off and what is made possible. Together, we conclude these acts negate and yet necessitate care.

Ironically, the decision of TWIMC performers to come out as people living with dementia politicizes the therapy used in the support group. Participants seem to be aware that in not disclosing, objectification of people with dementia remains unchallenged, reinstating O’Toole’s (2013) warning that nondisclosure can represent embedded ableism. In disclosing to audiences of people whom they might know, they broach a very real risk of being treated as socially dead.8 They disclose partly to help themselves and partly to help others in their immediate communities. Audience members could be family, nursing staff or doctors. The challenge they present to these people is therefore an act of ‘collective care’ (Tronto 2006: 17) for their communities. In calling out certain behaviours, they challenge the way in which people with dementia are conceptualized and treated. In the creative development of DLT, Jianna’s disclosure of Down syndrome is performed by default and yet she resists the label ‘disability’. As Jianna realizes, in disclosing she risks associating herself with perpetuating oppressive narratives of disability. So, she negates disability and its consequent, purportedly caring ableist responses. Even though Sarah-Vyne does not agree with this, preferring to see disability pride, she helps Jianna devise her anti-disclosure. Jianna’s facilitated disclosure both uncovers the paradox people with visible disability face and the dialectical attitude held by Sarah-Vyne. Clearly, understanding that Sarah-Vyne herself employs ‘disability as method’ here ‘is to recognize the hard labor that disabled people do every day to create their own space for action in competition with an ableist habitus that constantly exhausts that space’ (Dokumaci 2018). Here, seamlessly, ‘accessible care’ (Kelly 2011) materializes between Jianna and Sarah-Vyne and for their audiences then, now and in the future. Our article begins to trace the practice and attendant politics of disability disclosure in and as performance, particularly in the context of dance and theatre practice by and with performers with disability or dementia, specifically in Australian and American contexts. It also highlights the paradoxes inherent in ‘care’ in these contexts. The cultural lenses of disability and dementia make visible the dependency structures inherent to performance-making writ large.

Notes

1 Hill House is a medium care facility for older people and people living with dementia.

2 We acknowledge the reluctance of the Deaf community to be associated with the term ‘disability’ as well as any other groups or individuals who do not identify as having a disability. For example, people with cancer and survivors of domestic violence typically do not identify as disabled.

3 The symposium’s title ‘The Last Avant-Garde?’ borrows its name from a disability performance research project at The University ofMelbourne (see Austin et al. 2018).

4 The oppression experienced by disabled people is usually referred to as ‘ableism’ (for discussion , see Campbell 2012: 212-28). For the performer Kate analyses in this article, jian na , who lives with Dow n syndrome, and in turn, participants living with dementia, ‘cognitive a bleism’ (Ca rlson 2001) comes into play.

5 The preferred term is ‘Down syndrome’, without the capitalized’s’. However, it is cited exactly as it appears from the source (cited in Voorendt 2010).