1 After Jose Munoz (2009), who gives an account of their experiences of growing up with and through queer punk scenes in the U.S. Munoz, J. (2009) ‘Cruising Utopia: The Then and There of Queer Futurity‘ NYU Press: New York.

2 The original performance took place at Jerwood Space, London on 13th September 2018, commissioned for the Jerwood Staging Series. A performance with a live set by SWAN MEAT, and biofeedback-controlled video projections, 27 minutes.

Kafer, Alison. (2013) ‘Feminist, Queer, Crip‘. Indiana University Press.

 In ‘Notes From The Underlands’ (2019) by artist Romily Alice Walden. The exhibition notes from the ARMB Shortlist Exhibition at Baltic39, Newcastle (2019) read: ‘Notes From The Underlands (2019) is a performative text relating to queer disability culture. The text, a ‘manifesto for a queer future’ is performed through audio, large-format print and a video with subtitles, challenging the notion that the body must be physically present (and able) in order to perform.’ 

Including Leah Clements’ work ‘Sickbed’ (2018), a virtual reality game positioning the player in a POV from a person in bed with an illness, with an energy level indicator and character commentary including statements like ‘you’re too tired to move’; Amy Rosa’s ‘Somnium’ (2019) explores her own illness and disrupted sleep, and draws from the tradition of Box-Beds frequently used in late medieval times in Brittany, Wales, northern England and Scotland to isolate a sick person from the rest of the household; Laura Lulika and Hang Linton’s work ‘moonbabies squidding in the Land of Nod’ (2019) is an installation exploring care and intimacy with altars and rituals made from medical  equipment and found objects, and includes a resting place inside a tent for the audience to view some of the videos while lying down; Romily Alice Walden’s ‘-o-:06:19’, is a video installation with a time-lapse of their bedroom ceiling, a familiar view for those with bed bound disability; all these works in various ways bring sick and Crip experiences of sleep and rest in to the public space of the gallery.

Content Warning
The video contains images of blood and medical equipment


Instead of a scheduled collaborative performance of 'Chronica' with SWAN MEAT, I’ve written a short text exploring issues relating to embodiment and ‘liveness’ in performance, and how these can (or can’t) be translated or mediated through online and livestream technologies. In this I think through elements of my own practice, exploring the politics of embodiment, individual and collective anxieties, and perceptions of disability. I will broadly discuss the importance of liveness and embodiment in addressing the body in terms of chronic illness or disability, the gaze of the audience in the context of an art or music event, and how they interrelate. With the Covid-19 crisis and subsequent lockdown, there has been a direct impact on live performers in terms of their income and material survival, affecting the community’s capacity to sustain people with shared interests and values. There have had to be shifts in terms of how to support performance artists and musicians, towards livestreams, album sales or donations. What happens in the shifts to these alternative formats for live events e.g. poetry readings on Zoom or Twitch music livestreams; what is lost and what is gained? There can be disruptions to the qualitative experience of the performance, both for the performer in terms of not having a responsive audience or atmosphere, and a potential lack of focus or attention from an audience viewing from home. As well as this kind of analysis, it is also important to look at what has been made possible, and how these formats have in some ways allowed greater accessibility through remote access. These changes inevitably raise questions about the norms of mainstream art and music infrastructures in terms of accessibility relating to disability, as well as socio-economic and geographical access.


Performances, events and other forms of coming together can generate intangible and transformative experiences that seemingly couldn’t be fixed or distilled. Smaller-scale artist-run project spaces and small-scale venues for gigs and club nights are often not a means of profit- making, and many people struggle to survive and continue to work and live in these subcultures out of ideological commitment and creative engagement. There are multiple modes of performance in these spaces, both by the performing artists, musicians or DJs themselves, as well as by the audience, where there can be an exciting aspect of recognition and belonging to a wider social structure: a collective moment. These spaces allow a temporary mobilisation of people, forging identities based on similarities, which can be especially important for marginalised groups, including ethnic minorities, LGBTQI+, and working class people (amongst others). These collective experience(s) allow a different temporality or embodiment and relation to the world that is anti-normative1. In these events there is a chance to test out the body, perform, practice and rehearse or work through individual and collective identities.

However, I’m aware of trying to not fall into a romanticisation or nostalgia of these spaces. Despite being a place to potentially work through personal and political values, they can also perpetuate other sociopolitical inequalities. A sense of belonging can also be (mis)used to create a sense of exclusivity, hierarchy or elitism. There continue to be direct experiences of racism, sexism or homophobia in art galleries, gig venues and clubs, even when trying to maintain as safe a space as possible. There are other forms of social exclusion, where smaller art and gig venues may have restricted physical access for people with disabilities or chronic illnesses e.g. venues in old warehouses that don’t have the funds or are unable to improve access, squats or one-night raves where it may not be possible to adapt the space in time, or an economic barrier to access through ticket prices.

The potential of performance depends on context and positionality, in the immediate space, interpersonally, as well as systemically within arts and music infrastructures. A performance at a DIY space to friends, can have a completely different resonance to one to collectors at a commercial art fair— it depends who is it for, and why; whether you need to pay to access it and whether it’s affordable, whether the audience is paying attention or being respectful to the performer, and how much of the process actually benefits the artists. As well as spaces having limitations and restricted access for the audience, there are also norms for performing artists that have developed, with a lot of expectations but also a simultaneous lack of material or other kinds of support; it’s not my intention to criticise specific spaces, but more the wider infrastructure that currently exists. There can be a lack of structural support for the performers, in lacking the time to rehearse in the space, have a technical run-through, or a rushed sound-check at a gig. There is a lot of responsibility on the performer, who is expected to prepare and then immediately adapt to a new space, and in a ‘gig economy’ where work offers are unpredictable and inconsistent, you may feel you need to take any opportunity. I make these observations to ask how we can work towards forms of visibility without spectacle, without performance being an ‘add-on’ to create publicity or currency for an event, while taking care of and not exploiting the performer(s).

This process is of course complex and multi-faceted, with multiple kinds of performance and labour involved, including the performance of the visible or public-facing self, e.g. through activity on social media to generate interest, and undertaking other jobs to support their creative practice.  These criticisms do not mean that the original motivations for wanting to create and share performances— for expression and connection— are in any way nullified; it is more to reflect on the existing norms of performance, and to question whether there could be more sustainable alternatives.


In my practice I use a range of media to explore my experiences of chronic illness, disability and their wider political contexts. I felt it was important to use performance in a way that could speak about my embodied experiences of ‘invisible disabilities’. 'Chronica'2 is a collaborative performance with SWAN MEAT (Reba Fay), using video, sound and biofeedback technology. Biofeedback equipment (a Bitalino [Arduino] board with biosensors) is worn either by myself or a performer, measuring Galvanic Skin Response and Electrocardiogram or sweat levels and heart rate, as indicators of Anxiety. The live data generated by the performer’s body in turn affects the selection and order of the video clips projected, and informs the sounds generated by musician SWAN MEAT. Throughout, the performer undertakes a range of Trauma-Release Exercises (TRE, for treating Post-Traumatic Stress Disorder). When the biofeedback data reaches certain thresholds, this triggers certain video clips to be played, and is interspersed with fragments from the live data of the performance. The piece originates from life-long experiences of encounters with medical infrastructures, and the monitoring of chronic health conditions through regular ECG (heart rate) check-ups. I became interested in using biofeedback and biohacking as an attempt to reclaim autonomy and control, and to re-frame the biomedical gaze. I wanted to question the use of biomedical technologies that can often flatten lived experiences into numerical or graphical representations. I also wanted to question ideas of proof and evidence surrounding illness, which is usually perceived as more ‘legitimate’ if it can be measured and have a visual output, especially for ‘invisible’ disabilities. There are already many abstractions involved in the process of diagnosis—of how you articulate your experiences and how this is then interpreted by medical professionals, as well as additional abstractions through technological translations and representations. These processes of having your own body described and refracted through other languages of medical terms or data can make you feel alienated and isolated. Technology doesn’t necessarily allow a more ‘direct’ representation as often perceived, but is another form of mediation.

SWAN MEAT’s (Reba Fay) music and poetry also draws from her own experiences of chronic illness and hospitalisation. In working together on 'Chronica', we discussed our shared love of music genres such as Industrial, Electronic-Body-Music and noise (especially the 'Tetsuo: The Iron Man' soundtrack by Chu Ishikawa) that have a viscerality that could evoke embodied experiences of trauma and its medical treatment. We then talked about forming a repertoire of sounds that could correspond with the imagery, including samples of the creaks and sounds of hospital beds, machines and a recording of the poet Anne Sexton reading her poem 'Wanting to Die'.

From exploring visual and sonic representations of anxiety and trauma in sound and video through the haptic image, I also wanted to experiment with bodily processes that directly generate or fuel part of the work itself, where the live body is directly implicated rather than being represented. This isn’t necessarily a ‘better’ or ‘more accurate’ representation, but just different; in fact, the intention of using biomedical technology in my work was more to show its inability to mediate or equate to lived experience. ‘Biohacking’ encompasses a wide range of different practices, some of which have the aim of questioning the ‘gatekeeping’ of biomedical knowledge by certified authorities, and promoting wider education and access to medical technologies. Some biohackers call for a critical awareness of the socio-economic barriers to medical care, including social prejudice by medical professionals against specific groups, e.g. underestimating the physical pain experienced by ethnic minorities, or women, and consequently not treating or referring them to the specialist care that they need.  Biohacking also questions the ethics of the biomedical industries (e.g. pharmaceutical companies, lab testing, patented medications). The use of biofeedback technology in my work is to question ideas of self-mastery and control, where consumer versions are available to monitor and manage multiple health conditions; I intend to subvert this use, as I haven’t ‘controlled’ my bodily responses, and it continues to generate different data and video and sound combinations, making each performance different and unpredictable, like the processes of the body itself. Biohacking can also offer a different path for disabled or chronically ill people to critically engage with medical infrastructures, to be aware of complicity in the use of certain technologies, and create forms of resistance and a different imaginary, as discussed in depth in Alison Kafer’s critique of the ‘Crip Cyborg’3 .


As a disabled artist I have often felt a dilemma between wanting to express my disabled embodied experiences through physical performance—as an underrepresented group of people where visibility and representation is important and necessary—but simultaneously having conditions that prevent me from doing so. There are many difficulties and limitations that people with a range of different disabilities may face: requiring different forms of communication than IRL meetings, or accessible information (audio version, larger typeface, ‘easy read’ format, Sign Language interpreters et al.), a lack of accessible transport to get to the venue, a lack of  accessible spaces, and the additional labour of negotiating these needs, needing places to rest at venues or additional days before or after travel to the venue (if across the country or internationally) to rest and recuperate, a possibility that the live element or part of the performance or artist talk may not go ahead, and organising and coordinating a back-up plan. The performance space itself needs to be accessible, e.g. Sign Language interpreters, a set-up with space for wheelchairs and mobility aids, content warnings, and space and time for the performer or audience to rest or leave throughout if needed. In the performances I’ve done I felt it was important to have a live element to create affect and intensity, and to have the data and technological processes made visible, to contrast to the images and sounds that created a palpable sense of anxiety. (Re)creating this state of overwhelm was intended to be a mirror of my experiences of the conditions themselves, as well as of the difficulties of accessing and undergoing treatment(s).

There are ongoing contradictions and tensions in the decision to perform, as I don’t want to repeat the biomedical gaze of the ‘sick’ or pathologised body; however, visibility and representation— though often discussed, claimed or instrumentalised— is still such an important issue and the personal impact in enabling disabled artists to feel that they can make work around their experiences can be immeasurable. There are continuing questions in art and music performance around affect, empathy, authenticity and ‘compassion fatigue’, where audience members may not fully understand or empathise with the chronically ill or disabled experiences being shown, or they can be met with cynicism, confusion or dismissal. This can show why disabled and sick artist communities of support and understanding are so important, to share and deal with multiple forms of ableism with people who’ve experienced similar things before. It is often argued that there is a relative choice or agency, as people with different abilities can favour different modes of working that are better for them; however in art and music infrastructures there is still an emphasis on certain kinds of IRL interactions (meetings in person, travelling to the office or studio of a curator or record label) that perpetuates ableist assumptions. There are multiple kinds of performance, not only in making a performance work, but also navigating how to ‘perform’ despite—or with—long-term illnesses in day-to-day life in art and music scenes. Under the general working conditions of late-capitalism as a low income, precarious or freelance worker, there are certain norms of ’productivity’, ‘output’ and professionalism, where self-sufficiency is placed as the highest achievement. In the face of this there can be a requirement of certain behaviours, in order to ‘pass’ as able, or for conditions to become subsumed or invisible; but even if you manage or suppress these symptoms, it still takes up energy and tends to re-surface in other ways.

I want to question whether interacting with and performing in these wider structures are necessarily sustainable, on an individual or collective level. It requires resilience to exist and survive in the first place, and then to generate new ways to approach, adapt to or to question these infrastructures. You can assert yourself through self-expression and taking up space, as well as using other strategies of resistance: refusing to internalise certain ways of working, by withdrawing (where possible) or demanding better conditions. One consequence of visibly disabled or chronically ill artists may be that this in turn becomes professionalised and ‘normalised’, to the extent that these infrastructures feel they have done ‘enough’ to accommodate artists with disabilities, rather than question the inherent norms and structures. It is important to continue to question why certain forms of IRL interaction are mandatory, why the artist has to assert their own access needs, and why it may be to the detriment of the health of the performer to continue working in these ways.

There could be new and different notions of performance, as the artist Romily Alice Walden has proposed through their own artwork as performance without the physically present body4.  Performance in contemporary arts and music specifically can sometimes feel like a spectacularising of experience, whereas the daily experience of many disabled people’s lives may seem unspectacular or banal, e.g. spending lot of time in bed or at home, and many disabled artists are bringing these experiences into the gallery space itself5.


With the Covid crisis and subsequent lockdown, there has been a direct impact on live performers in terms of their income and material survival, affecting also the community’s capacity to sustain people with shared interests and values. Many performance artists and musicians have had to problem-solve, adapt and find new forms of creative survival, including expanding into digital platforms for livestreams, album sales or donations. This has included reading groups and performances via Zoom, and performance and DJ livestreams via Twitch or Instagram. Some facets of performance and the spaces they take place in can be converted to an online format, and perhaps not just being a replication or mimesis, but also an expansion into new forms, e.g. the Club Quarantine livestream and 3D Virtual Reality feed via YouTube, available for those with 3D glasses (such as GoogleCardboard which is relatively affordable). This was part of the ongoing #SaveOurScene campaign, to continue supporting club performers and venues, and to maintain connection between specific communities of clubbers.

Many different spaces have proliferated to support and maintain livelihoods, though some performers may feel that something is ‘lost’ in the digital mediation of live performances: a lack of a responsive audience or atmosphere in not being able to ‘read the room’, and a potential lack of focus or attention from an audience viewing from home. Some performers have spoken of the ‘high’ they get from performing, the adrenaline through an awareness of people watching, which may continue though some may feel this type of interaction via a digital interface is more superficial. Are these shifts to livestreams and album sales working, and is this enough? While many people have been made unemployed during the crisis, some people still have an income (and potentially reduced outgoings by not commuting or spending disposable income otherwise), so now would be a good time to divert this to support musicians and artists. Even in London pre-Covid, many smaller grassroots project spaces, gig venues and clubs were closing down at an unprecedented rate, unable to pay increasingly extortionate rents. However, online spaces may increase accessibility for those who were unable to attend these venues before, and allow to serve as an access point to a community and a collective feeling. It has also shown that people can access global networks of venues and performers, e.g. attending virtual club nights in China from the UK, with many livestream set lists accounting for audiences tuning in from different time zones. This shows a strengthening of transnational links across subcultures, but I’m also aware of the stark technology divides that exist, both by income within a country and disparities in technological infrastructures globally, so this only favours those with consistent or reliable access to online platforms. It is still important for these spaces to exist during lockdown, especially if people don’t have any other spaces to go. For example, Queer House Party is an online space for LGBTQI+ people, which is important for those who may be living at home with family or housemates that are homophobic or that they are not out to. However, after many months of lockdown people may be experiencing ‘livestream fatigue’. It can be difficult to sustain community organisations and networks where everyone may not have access to or responds to digital technology in the same way. For some it may be a novel or exciting experience, whereas for people, art spaces and music venues that work directly with local communities, and may have spent years or decades trying to make their IRL space welcoming and accessible, it may feel like a loss.

Many larger arts institutions and venues that have more funding or capacity are now offering Remote Access to live events. Ironically, some of these were venues that I’d written to ask if accessible options were available pre-COVID-19, and they were not able to offer them. This sudden shift to remote access is what some disabled people (and people demanding greater socioeconomic and geographical access without the travel costs of getting to IRL spaces), have demanded for years. The current context has demonstrated that some disability access requirements can, in fact, be met when deemed ‘necessary’. However, it shouldn’t take a global pandemic for people to listen to the needs of disabled and other marginalised communities. Depending on the scale of the institution, it can take a (relatively) small amount of time and money to invest in the infrastructure needed to live-stream events. Instead of static one-shot recordings of performances, a multi-camera setup could help those filming to engage and respond to live performances differently, and live edit to switch between them. There are of course start-up costs in buying or hiring additional equipment and new people, but the current norms of event documentation, e.g. hiring a stills photographer, show that the means are often already available. It would be great to be able to go forward and build and expand on what the COVID-19 crisis has shown to be possible: a shift in infrastructures for greater accessibility, potentially in hand with refusing the ableist demands to be physically present, while also simultaneously providing the support and infrastructure (e.g. accessible transport) for those who need it.

Though COVID-19 has been disruptive to art and music communities, and thrown many people and smaller artist-run venues into a precarious position of struggling to survive, or caring for themselves or others with health vulnerabilities, there are also some small positive impacts around the future of accessibility to art and music. Drawing from experiences of queer punk subcultures in the U.S., and in light of gentrification and the ongoing closures of Queer and music venues from the 1980s onwards, Munoz (2009) suggests that an optimism is needed to ‘nourish our sense of potentiality and not reinforce our feeling of disappointment. If we are to go on, we need a critical modality of hope and not simply dramatization of loss and despair’ (2009:111).

Sophie Hoyle is an artist and writer whose practice explores an intersectional approach to post-colonial, queer, feminist, critical psychiatry and disability issues. Their work looks at the relation of the personal to (and as) political, individual and collective anxieties, and how alliances can be formed where different kinds of inequality and marginalisation intersect. They relate personal experiences of being queer, non-binary and part of the MENA (Middle East and North Africa) diaspora to wider forms of structural violence. From lived experience of psychiatric conditions and trauma, or PTSD, they began to explore the history of biomedical technologies and its overlap with state and military surveillance and control. Recent projects include Psychic Refuge (2019-20), an R&D commission by Unlimited and Forma, addressing trauma and mental health in the UK and Palestine; a residency at Rupert, Vilnius (2020) exploring mental health treatment in Lithuania,  and looking at biohacking and alternative forms of mental health treatment in Austerity UK through the Shape Arts ARMB Bursary at BALTIC Contemporary (2019). They’ve also shown work and participated in projects at Editorial Space, Vilnius (2020), Arnolfini Bristol, Science Gallery London, BALTIC 39 Newcastle, Wellcome Collection (2019), Jerwood Space, London, Focal Point Gallery Southend, UP Projects and Flat Time House, Art Night London, Outpost Norwich (2018), BAK Utrecht (2017), [space] London, Transmediale Berlin (2016), BFI London, and Recontres Bandits-Mages, Bourges (2015). They have written texts for Errant Journal (2020), Orlando magazine (2019), Solar Plexus Pressure Belt (2018), Doggerland Journal, Cesura Acceso (2017),  X-TRA and AQNB (2016).