Volume 15 Number 2
Special Issue: ‘Transdisciplinarity in Disability, Art and Design’
journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Editorial. English language. https://doi.org/10.1386/jaac_00070_2
Published Online February 2025
AMANDA CACHIA
Kathrine G. McGovern college of the arts, University of Houston
EMMA SHERCLIFF arts University Bournemouth
ELAINE SPEIGHT University of central Lancashire
ABSTRACT
This Special Issue, guest-edited by art historian and curator Amanda Cachia, brings together artists and researchers situated in the overlapping communities concerned with disability studies, art and design to explore how the concept of ‘transdisciplinarity’ helps to navigate the intersection of disability, art form, audience and context. Readers will encounter a dynamic blend of twelve scholarly and artistic projects, which collectively explore evolutions and trends within the crosspollination of disability, art and design, and explore the critical role of access as a medium of change.
The Journal of Arts & Communities (JAAC) is positioned to amplify practice and discourse at the intersection of arts and communities. Engagement in creative arts practices can build and strengthen a sense of community amongst
KEYWORDS
disability community access art forms multi-disciplinary neurodivergent community
disabled embodiment disability art activism
individuals with a shared connection. Equally, a community can offer access to creative expression for its members, often by foregrounding such a connection – be it a place, an experience or a shared interest – as the invitation and focus of activities. As we consider this, questions emerge that drive us to interrogate the nature and form of these creative practices and the ways in which they might strengthen community and also expose the cracks: whose creativity and what is being expressed? Unpredictable, challenging and revelatory, creative arts practices ask their audiences to learn how to look for novelty, ingenuity, humour and protest. Connection cannot be assumed but must be strived for. Here, the journal has a role to play by drawing attention to arts as practised in various communities and presenting these as opportunities for our audiences to see the world as others see it.
Alongside our continued interrogation of creativity and the arts practised in communities, we seek also to broaden the range of communities represented. In this Special Issue, guest editor Amanda Cachia has assembled a multiplicity of scholars and practitioners situated in the overlapping communities concerned with disability studies, art and design. Writing and practising from within what might be broadly described as the disability art and design community, the authors and artists brought together by Cachia tackle the concept of ‘transdisciplinarity’ from various perspectives. Each contributor explores how the concept of transdisciplinarity helps to navigate the intersection of disability, art form, audience and context. Sharing diverse practices and experiences, the authors turn the notion of ‘access’ – so often shorthand for a narrow and ableist approach to expanding cultural participation – on its head, offering readers alternative insights into knowing and being in the world.
In this Special Issue, titled ‘Transdisciplinarity in Disability, Art and Design’, readers will encounter a dynamic blend of twelve scholarly and artistic projects by leading scholars and artists within the expanded fields of disability, art and design, from a trans-disciplinary perspective. The scholars and artists come from the United States, Canada, the United Kingdom and Australia, although there is a predominance of North American contributions. Given the centrality of North American perspectives, crip theory, as it is informed by Robert McRuer’s (2006) scholarship, is an accepted frame of reference. Crip theory allows for much more expansive definitions of disability as it also incorporates sickness, illness and immunocompromised conditions into its discourse. What does the cross-pollination of disability, art and design look, sound and feel like from within and across the disciplines of art history, visual culture, museum and curatorial studies, architecture, design, the health humanities, film and theatre, and the creative industries at large? What are some of the noteworthy trends and evolutions in the field that highlight critical issues of the present, which will likely become most impactful in the future? In addition to answering these questions, this Special Issue attempts to tackle the conventional definition of ‘transdisciplinarity’, which typically straddles a basic typology between theory and praxis, and where practitioners (such as artists) are acknowledged as valid and critical producers of knowledge on par with academics and intellectuals. Drawing from the work of French scholar Cyrille Rigolot, this Special Issue argues for a more complex definition of ‘trans-disciplinary’. As Rigolot states, ‘when transdisciplinary is considered as a way of being, it is inseparable from personal life and extends far beyond the professional activities of a researcher’ (2020: 1, original emphasis). Rigolot’s construction of transdisciplinarity resonates and aligns with one of the foundational tenets of disability studies itself and the social
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model, which is that disability is a way of being that offers generative creative tensions for ableist society to consider. The authors grapple with more complex philosophical and practical applications of transdisciplinarity, such as Sara Hendren’s ‘fruitful asynchrony’ (223 in this issue), Aaron Richmond’s ‘decompartmentalizing multisensoriality’ (116 in this issue) or Andrew David King’s ‘multimodal aesthetics’ (91 in this issue) and how these new constructions might be felt across an ever-expanding ecology of disability arts, culture and design.
The Special Issue has been edited such that the essays and artworks are bound together to create a narrative on transdisciplinarity across various mediums, inclusive of visual art, choreography and movement, tactility and inter-sensorial spatial practice, poetry and stories of access, and language and policy. The artists in this Special Issue include Rob Macaisa Colgate, Jillian Crochet, Paul DeFazio, Elinor Rowlands and Elizabeth Sweeney. Each of the scholarly articles is interspersed with artworks that are inclusive of visual art, creative writing, curatorial projects, installation art, graphic design, PowerPoints, captions, Communication Access Real-Time Translation (CART), audio descriptions and other forms of multimedia. As always, this Special Issue of JAAC is mindful of being especially accessible to our disabled and non-disabled readership, and thus Intellect has ensured screen-readerfriendly design, audio descriptions which accompany all images, and other dynamic forms of access which aim to showcase innovation and thoughtfulness that could serve as a template and a model for others to learn from. In addition to this, numerous articles and artworks focus on typologies of access in both intellectual and creative terms, such as the pieces by Bree Hadley, María José García Vizcaíno, Lisa Shawgi and the co-written contribution by Eliza Chandler and Megan A. Johnson. As Cachia (2022) has enunciated in her own scholarship on creative access, all these authors recognize that access is a medium (and not simply a policy) that plays a critical and iterative role across the trans-disciplines of disability, art and design. The agency of access is thus one that ties all the disciplines together in a pledge to achieve social justice and equality for disabled communities (Cachia 2024).
Across the vast fields of theory and praxis represented in this Special Issue, the unifying thread is how each of the contributors belongs to the disability community (or one or more specific disability communities). Several of the communities – and disabilities – specifically represented in this Special Issue include members of our neurodivergent community, people who are low-vision and blind, and people with Raynaud’s phenomenon. Within disability communities, one may encounter opportunities for mentorship, a space to share advocacy and/or policy concerns that affect the rights of disabled people, avenues to experience cultural enrichment that directly impact the lived experiences of disabled people, and mutual aid and emotional support to shoulder hardships and celebrate victories. Most critically, because disability communities are categorized as a marginalized group, the support of the community becomes more critical owing to the interdependent relationships that disabled people develop amongst one another and with each other, whether one is a wheelchair user, has low vision or is blind or is deaf and relies on a sign language interpreter. Each unique disabled embodiment is entwined with other bodies as a means to navigate the world, and thus, in some ways, we could even suggest that the disabled body itself is transdisciplinary owing to its generative possibilities to embrace new applications, methodologies and problem-solving challenges. Thus, disability community/
ies are important to underscore given the mission and the mandate of the journal’s focus, but also because the community component manifests itself in different ways throughout each of the original contributions in this Special Issue, either explicitly or implicitly. However, as disability studies scholar Richard K. Scotch (2011) notes, one of the most important and salient issues of the disability community is a political one, which is the degree to which disabled people wield control over the communities in which they reside or participate. For this Special Issue, disabled art historian and curator Cachia has assembled a collection of powerful work that very much shows disabled thinkers and practitioners in control of their path-breaking work, and how this model of community can help us to break down silos and barriers across our disciplines and fields.
Cachia, Amanda (ed.) (2022), ‘Introduction: Committed to change: Ten years of creative access’, in Curating Access: Contemporary Disability Art and Institutional Critique, New York and London: Routledge, pp. 1–14.
Cachia, Amanda (2024), The Agency of Access: Contemporary Disability Art and Institutional Critique, Philadelphia, PA: Temple University Press.
McRuer, Robert (2006), Crip Theory: Cultural Signs of Queerness and Disability, New York: New York University Press.
Rigolot, Cyrille (2020), ‘Transdisciplinarity as a discipline and a way of being: Complementaries and creative tensions’, Humanities and Social Sciences Communications, 7:1, https://doi.org/10.1057/s41599-020-00598-5.
Scotch, Richard K. (2011), ‘Introduction: Disability and community’, in A. C. Carey and R. K. Scotch (eds), Disability and Community: Research in Social Science and Disability, vol. 6, Bingley: Emerald Publishing, pp. xiii–xvii.
Amanda Cachia is an assistant professor and assistant director of arts leadership at the University of Houston. She is the author of The Agency of Access: Contemporary Disability Art and Institutional Critique (Temple University Press, 2024) and editor of Curating Access: Disability Art Activism and Creative Accommodation (Routledge). She was awarded the 2023 Andy Warhol Foundation Arts Writers Grant for her second monograph, Hospital Aesthetics: Disability, Medicine, Activism (Manchester University Press, forthcoming 2025).
Contact: Kathrine G. McGovern College of the Arts, University of Houston, 4188 Elgin St #314, Houston, TX 77004, USA.
E-mail: acachia@uh.edu
https://orcid.org/0000-0001-6142-523
Dr Emma Shercliff is an associate professor of textiles and participatory making at the Arts University Bournemouth. She co-founded the Stitching Together research network and has been involved with creative, communitybased textile-making activities as both workshop leader and participant for over twenty years. Her research focuses on creative participatory approaches to design, making and cultural engagement applicable to cross- and interdisciplinary settings.
Contact: Graduate School, Arts University Bournemouth, Fern Barrow, Wallisdown, Poole, Dorset, BH12 5HH, UK.
E-mail: eshercliff@aub.ac.uk
https://orcid.org/0000-0002-2961-4685
Elaine Speight is a reader in curatorial practice and place at the University of Central Lancashire (UCLan). Her research interests surround the capacity of art to interrogate, mediate and critique the connections between people and place, and the politics of public space. She is co-curator of the public art initiative In Certain Places, through which she also runs ‘Feed’, a project about public breastfeeding. Elaine is co-director of the Institute of Creativity, Communities and Culture at UCLan and a trustee of the Cumbria-based arts organization, Art Gene.
Contact: School of Arts and Media, University of Central Lancashire, Preston, PR1 2HE, UK.
E-mail: espeight@uclan.ac.uk
https://orcid.org/0000-0001-5275-9092
Amanda Cachia, Emma Shercliff and Elaine Speight have asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the authors of this work in the format that was submitted to Intellect Ltd.
journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Article. English language. https://doi.org/10.1386/jaac_00068_1
Received 22 May 2024; Accepted 6 November 2024; Published Online February 2025
ANDREW DAVID KING
Uc Berkeley
ABSTRACT
This article argues for the mutual relevance of disabled and crip critique to theories of transdisciplinarity in the context of questions about multimodal aesthetics and accessibility. Recapitulating the author’s preliminary search, using the methods of analytic philosophy, for answers to these questions, the essay turns to the notion of ‘cripping’ – interrogating received categories of the normative and non-normative using the tools of disability-based critique – to imagine how, through a cripped version of transdisciplinarity, new practical and theoretical possibilities for imagining access in the arts might emerge.
How might disabled experience and disability, indeed crip, critique inform an understanding of transdisciplinarity in relation to the arts? To approach this question, I begin by reviewing my own philosophical research into aesthetics and disability studies – research that asked about the relationships between artistic media, sensory modalities and aesthetic experience. Reflecting on the outcomes of this research, which draws on the resources of analytic philosophy, I speculate about how we might crip transdisciplinarity. In other words, I ask how we might locate the common ground of disability critique and transdisciplinarity, as well as ask what disability and specifically crip theory can offer a theory of transdisciplinarity in the service of artists and art theorists. I hope to show not only that disability critique and the theory of transdisciplinarity have much to offer each other but also that their related commitments point towards the prioritization of practice, experiment and play over the aspirations of unified theory – a prioritization that aligns with recent interventions made in the theory of transdisciplinarity (Rigolot 2020). While what I have to offer in this brief essay may strike many readers as highly abstract, my hope is that artists,
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KEYWORDS
disability aesthetics access multimodality interdisciplinarity perception practice critique
curators, community organizers and audience members will find in my remarks resources for engaging a disability-minded transdisciplinarity both in their own practices and in the theoretical innovations that spring from those practices. It remains a contentious question what the methods of analytic philosophy might offer the arts, humanities and social sciences. While a graduate student in philosophy at Central European University, I attempted to draw on the discipline’s resources to ask how centring disability, rather than approaching it as a marginal phenomenon, might reorient aesthetics. Until relatively recently, when disability and art have been thought together – especially mainstream and canonical art, with its frequent assumption of an non-disabled, neurotypical audience – the primary question has been assumed to be about access. The art world’s reckoning with disability has prompted able-bodied artists, curators and appreciators to critically reflect on their assumptions about bodies, minds, movement, perception and discourse to consider how artworks might be conveyed to audiences in ways that do not exclude those with ‘extraordinary’ or ‘minority’ bodies (Barnes 2016: 1; Garland-Thomson 1997: 7). In an admirable step towards inclusion and disability justice, curators have begun to countenance disabled aesthetic experience even in contexts where it has been long ignored (Reichinger et al. 2018). As a critical category, however, disability has yet to achieve the currency and cachet of other categories, like race, gender, sex and class (Wang 2022: 2–3). This observation may help to explain why conversations that interrogate the very terms of debates about access in the context of aesthetic practice and reception have emerged only somewhat recently (Cachia 2019). The understandable thought that access constitutes the main area of interest at the intersection of art and disability has led some curators and theorists to hold as fixed their underlying social and discursive assumptions about art, perception and disability. My research aimed to investigate these assumptions, in particular the assumption that certain artistic media could only be appreciated – or properly appreciated – by means of certain sense modalities: a painting by sight, a symphony by hearing, and so on.
Taking my cue from the writer Georgina Kleege, my philosophical research sought to discover what, if anything, about a work of ‘visual’ art required that it be appreciated through vision (Kleege 2018). Fundamentally, however, my questions were general in scope. What was the relationship between (a) specific aesthetic media, (b) specific sensory modalities and (c) aesthetic experience? Crucially, how might the various answers we could give to this question change how we think about access? To focus my inquiry, I selected a test case, prompted by recent initiatives to develop more sophisticated access technologies for museumgoers in Vienna, Austria. At the Belvedere Museum, where Gustav Klimt’s The Kiss is held, curators and designers collaborated to produce a tactile model of Klimt’s painting, one scaled to the original (Reichinger et al. 2018). Although no one, including myself, seemed to question whether the museum’s installation of the model benefitted self-identified blind and low-vision museumgoers – an assumption interrogated by John Lee Clark in work discussed below – it was difficult to ascertain how the collaborators who produced the model understood it theoretically. The motivation for the model seemed to be the conviction that blind and low-vision museumgoers would be able to engage with Klimt’s work by touching the model, haptically perceiving the relations between the raised contours that three-dimensionally reproduced two-dimensional lines, shapes and figures. This concept of ‘engagement’ clearly makes room for some form of interaction between blind and low-vision museumgoers and the painting. It leaves open, however, whether the object
of that engagement is the original work itself or a proxy. But this difference – between what I will call ‘primary’ and ‘secondary’ access – seems to matter to able-bodied culture; it seems to map onto the difference between encountering a painting ourselves and having it described to us, where the latter is assumed to be a lesser kind of experience. When access to a work of art cuts across sensory modalities – here linking the realm of touch with that of vision – must modes of access that engage sensory modalities not traditionally associated with the original work be demoted to secondary status?
In my research, I sought to construct an argument one could give in support of the claim that, in the case of these tactile models, primary access is possible – in other words, that blind and low-vision museumgoers engaging with the tactile model of The Kiss were engaging with the painting itself, and not with a proxy (King 2022). Methodologically, this project – which brought together resources from analytic aesthetics, the philosophy of disability, the philosophy of perception and political philosophy – was experimental and speculative. I wanted to draw from the resources, debates and methods of analytic philosophy to construct a theory of multimodal or transmodal aesthetics that could underwrite bold claims about access when access effaced the lines that kept aesthetic media and sensory modalities cleanly apart. I entertained a hypothetical: If these tactile models could indeed provide primary access to paintings like The Kiss, how might this be so? The project was not, in other words, an attempt to provide a decisive argument in favour of this conclusion, but an attempt to explore answers to a question. Another important part of this project was restorative or even polemical; as a disabled person, I wanted to find a compelling defence for the idea that primary access is possible in a much wider range of cases than able-bodied culture countenanced. If this defence were successful – or promising enough to warrant further development – it would contribute, I thought, to a general understanding of what exactly access makes accessible, as well as to our grasp of how different senses contribute to aesthetic experience and knowledge, in the service of interrogating the hierarchy of the senses formulated in Western culture at least since the Renaissance (Pallasmaa 2012: 18). If the view I were exploring were true, its consequences for the ontology of art would be difficult to overstate. The Kiss, for one, would no longer essentially be essentially two-dimensional – no longer essentially linked to sight and sightedness. It would no longer be understood as a single physical object produced by Gustav Klimt in the early twentieth century that hangs on a museum wall in Vienna but as a set of perceptible relations instantiated in the original painting, as well as in tactile models of it.
While the preliminary conclusions of my research are less interesting than the questions that led to them and to which they in turn led, I want to briefly mention them here. In broad outline, my proposal made central use of the notion of sufficient structural homology. I argued that what allows the tactile model of The Kiss to provide blind and low-vision museumgoers primary access to the painting, if it does, is the fact that it is sufficiently structurally homologous to the physical object made by Klimt. So put, the claim needs further elaboration: about what counts as ‘sufficient’, what ‘structure’ is, and how the term ‘homologous’ is being used. The concept of homology, borrowed from mathematics, is used here to indicate a formal relation of resemblance that is relatively fine-grained (this is where the sufficiency condition comes in), but not so fine-grained as to require identity. In other words, two objects that share a structure may be homologous; but they may also contain differences that set them apart from each other. In the case of the tactile model, the
1. For the sake of argument, I also made assumptions about what amounted to ‘structure’, prioritizing lines and figures over colours.
structure of the raised representations of lines and figures from The Kiss was, I suggested, similar enough to that of the painting itself – though it remains a significant challenge to state and defend the level of specificity an access technology must reach to satisfy this condition.1
All these philosophical moves can and should be scrutinized. I deployed them to sketch the theoretical underpinnings of the claim that what the tactile model of The Kiss provides is a form of primary access. The project began with an intuition from able-bodied culture – that one simply cannot experience a painting by touch, because paintings, by definition, are to be seen – and explored how one might refute that intuition on metaphysical and epistemological grounds, rather than moral or political ones. On the other hand, however, perhaps the claim I wished to defend is not so counterintuitive after all. Sighted audiences frequently appreciate reproductions of visual artworks without meaningfully differentiating between the reproductions and the original works. This practice suggests, at the very least, that the difference between engaging with an artwork versus its proxy may not be as philosophically significant as the dominant assumptions present in conversations about access have led us to believe. My proposal went further, however, by suggesting that this structural resemblance could cut across sensory modalities – that one could use touch to have an aesthetic experience of something conventionally understood as needing to be seen. The upshot of this metaphysical conclusion was, I hoped, that what the tactile model provided blind and low-vision museumgoers was not a form of aesthetic experience that was secondary or lesser when compared with what sighted museumgoers enjoyed, but simply a different mode of engagement with one and the same artwork. Furthermore, I contended, if this argument were successful, it would have political implications: it would generate a reason, beyond experimental or sympathetic interest, for providing these and other novel forms of access to disabled audiences.
Although I undertook this research within the discipline of analytic philosophy, it was animated by an interdisciplinary ethos. It ranged over media and art practices often thought to be too distinct to be fruitfully compared and drew on debates in cognitive science as well as philosophy (Carroll 1985; Hopkins 2000; Kennedy 1993; Lopes 2002). This aspect of the project eventually led me to become more intrigued by the practical possibilities for aesthetics and access that such philosophical questions introduced than by the answers one might give to them. For instance, what would happen to the preliminary answer I arrived at in my research if, instead of bracketing the differences that my notion of similarity could not yet account for, I treated these as unavoidable – even desirable – aspects of multimodal aesthetics? What if we understood The Kiss not as an abstract set of relations but as a potentially expandable set of objects – the original painting and the tactile model? How might this, in turn, change how we think of the scene of the painting’s reception? Sighted museumgoers can, after all, see and touch the tactile model, too; it may just as well become part of their overall experience of the artwork. One might wish to invoke here Derrida’s notion of the supplement and its logic – to think of the tactile model as supplying something missing from the original scene of reception or of making present, making accessible, something already latent in the painting (Derrida 1997: 144–45). But would treating the tactile model as supplementary in the Derridean sense amount to a clandestine way of demoting it? Regardless of how one answers any of these questions, what is tantalizing is the broader possibility that accessibility might be incorporated into artworks, rather than added from without, and this even in
the case of historical works. The Kiss, on this speculative conception, would become, in one sense, the scene of reception that includes both the painting and the tactile model. It would come to resemble contemporary artworks that foreground multimodality, and hence multimodal access, from the start.
Transdisciplinarity, a concept of inquiry with its own rich history, offers an even more fertile rubric than interdisciplinarity for thinking about these and other possibilities for aesthetic practices and theories that engage disability and otherness. Tracing the origins of transdisciplinary discourse to Swiss psychologist Jean Piaget’s work in the early 1970s, Roland W. Scholz and Gerald Steiner describe Piaget’s understanding of transdisciplinarity as an ‘integration of disciplines’ in the service of unifying human knowledge (Rigolot 2020; Scholz et al. 2015: 527). This approach, which Scholz and Steiner term ‘Mode 1’ transdisciplinarity, complements a second kind of transdisciplinarity. ‘Mode 2’ transdisciplinarity refers to a process of ‘mutual learning between science and society’ that acknowledges the differing epistemic frameworks of theorists and practitioners while emphasizing the possibility of their collaboration (Scholz et al. 2015: 531, original emphasis). ‘Mode 2’ transdisciplinarity has, one might say, an ambivalent relationship to unified theory; it moves towards solutions to problems that may not be explainable in terms of a single epistemic or theoretical framework. While its lack of investment in knowledge as a unified category – which should be distinguished from its interest in what Foucault called ‘subjugated knowledges’ – might be seen as a weakness, this feature may, in fact, constitute its strength (Foucault 2003: 7). Aspirations towards unified theory may shade off, at the opposite pole, into what Rigolot calls transdisciplinarity as a ‘way of being’ – a disposition towards inquiry that emphasizes process, collaboration and transformation over the production of static articles of knowledge (Rigolot 2020: 4, original emphasis). Rigolot’s notion of a way of being echoes the philosopher Pierre Hadot’s description of wisdom as that which extends beyond knowledge and ‘makes us “be” in a different way’ (Hadot 1995: 265).
In light of the metaphilosophical pictures offered by ‘Mode 2’ transdisciplinarity and by conceiving of transdisciplinarity as a way of being, the hidden premises embedded in my philosophical project emerge into view. Must one frame questions about aesthetic experience in terms of historically contingent genres and categories? Must one strive to incorporate disabled experiences into a predominantly able-bodied conceptual framework, setting aside the possibility of their uniqueness and irreducibility in order to show that they are like or on a par with able-bodied experiences? While research that adopts these assumptions might be valuable for its results, as well as for what those results reveal about the limits of philosophical argument, a transdisciplinary approach aims for different outcomes. Rather than attempting to assimilate test cases into larger bodies of unified thought, transdisciplinary aesthetics might attend to a range of disparate cases and dwell with these practically as well as reflectively, permitting theory to emerge locally but not requiring either its emergence or its ultimate unification. What transdisciplinarity offers inquiry on this rendering resembles what Walter Benjamin, in a famous analogy, termed the constellation. For Benjamin, ‘[i]deas are to things as constellations to stars’; ideas, distinct from concepts, determine how the elements of phenomena relate to one another without attempting to resolve their extremes, as concepts do (Benjamin 2019: 10). They inhabit a curious position: inflected by culture, history and myth, they nonetheless manifest for us real, material things and conditions. Linking extremes, fusing subjective and
objective, each constellation, Graeme Gilloch states, ‘must be recognized as only one permutation among an infinite number of possible configurations’ (Gilloch 2002: 25). If transdisciplinary inquiry is characterized by a tendency towards holism, it also carries with it, like the Benjaminian constellation, a sense of its own contingency, one geared towards the future and its possibilities (Choi et al. 2006; Klein 2014).
To clarify how transdisciplinarity and disability critique converge, allow me to return to the question of access and aesthetic experience. Access, as disability theorists and critics have argued, is not the terminus of disability critique and activism, however important it may be (Smilges 2023). Sometimes, access may not even be desirable, a point the American DeafBlind poet John Lee Clark makes trenchantly (Clark 2019, 2021). Why, Clark asks, is access always framed in terms of the abled including the disabled and not vice versa? Why are access technologies so often devised to approximate able-bodied experiences? Clark’s critiques of access directly target technologies like tactile models of visual artworks: ‘No one seems to have asked whether we want access to visual information. Why would we want a representation of a representation of something? Why not a tactile representation of that something, bypassing visual representation altogether?’ (Clark 2019: n.pag.). Clark’s critique reveals to me the sighted assumptions of my philosophical methodology, even if it is also true that blind and low-vision persons may disagree about whether they do, in fact, want access to visual information. A transdisciplinary approach to this question, on the other hand, holds out the possibility of thinking with both the refusal and the pursuit of tactile models – and other access technologies and practices –whether as aids to access or as genuine parts of the artworks themselves.
Furthermore, Clark’s critique raises the question of whether a so-called tactile model in fact provides tactile information. Would a ‘tactile’ representation of Picasso’s Guernica be more accurate or successful as a sharp-edged, angular metal sculpture than as an arrangement of raised lines that mirrored the lines of the painting? Clark recounts an anecdote about DeafBlind architect Robert Sirvage, who suggested that rather than asking how to make something more accessible, we begin with the question, ‘What feels beautiful?’ (Clark 2021: 34). To ask about beauty rather than access is to look to the future and its alternatives, rather than to the categories, concepts and methods of the past. Thinking about access transdisciplinarily, in conversation with communities and their practices, offers to lead towards new possibilities for art, appreciation and aesthetics before we have even fully theorized the phenomena we are transcending. In complicating categories and taking artistic practitioners and their audiences seriously as epistemic authorities, transdisciplinarity undoes the stipulated premises that made my philosophical project possible. A thoroughly disability-informed or, in what follows, cripped transdisciplinary lens is unwilling to take the meaning of access for granted, following Clark; but – and here it diverges from Clark, who repudiates an interest in the visual as such – it is also unwilling to accept that the meanings of received categories of aesthetic media and experience are fixed. As with Clark, a developer and proponent of the tactile language Protactile, thinking transdisciplinarily may bring into being new categories, experiences and practices that our current discursive resources cannot represent. Language and theory may have to catch up.
Thought of as an ongoing dynamic flux of theory and praxis or as Rigolot’s way of being, transdisciplinarity has much in common with disability critique, especially with crip theory and its gesture of cripping. Becoming more widespread in the 1990s, ‘crip’, a verb that controversially reappropriates a slur,
denotes processes by which ideas, texts, practices and representations are interrogated in order to ‘reveal dominant assumptions and exclusionary effects’ and the ‘arbitrary delineation’ between normal and abnormal (Lewis 2015: 47; Sandahl 2003: 37). It resembles the verb ‘queer’, although overt ‘cripping’ practices emerged among activists and artists, rather than academics (Lewis 2015: 47). In Robert McRuer’s words, crip theory ‘takes a sledgehammer to […] that which has been concretized’, a formulation that captures something of what Alison Kafer describes as the field’s ‘contestatory’ orientation when compared with disability studies (McRuer 2006: 35; Kafer 2013: 15). So put, to crip may seem to be to destroy, but this destruction is in the service of configuring a more inclusive, pluralistic world. The emphasis on cripping transdisciplinarity in my title is a way for me to underscore both the perpetual, unsettling energy of crip inquiry and its connection with Rigolot’s third sense of transdisciplinarity, which embraces the unknown, the transformative and the ongoing. I insist on speaking of ‘cripping’ rather than ‘disabling’ transdisciplinarity for several reasons, although I see these formulations as complementary rather than competitive. The very fact of the contentiousness of ‘crip’ is one such reason, signifying without downplaying the sense of continuous debate within disabled and crip communities over matters of representation while simultaneously highlighting a term that wears on its face its distance from able-bodied notions of disability. Key also are the term’s invocations of interrogation and process, gestures it shares with transdisciplinarity. In speaking of a crip or cripped transdisciplinarity, my suggestion is not that transdisciplinarity is inimical to disabled and crip critique; to the contrary, my suggestion is that transdisciplinarity’s core motives already encode crip concepts that should be brought out further, thereby allowing us to see how transdisciplinarity can illuminate and reconfigure questions about disability and aesthetics.
One way that transdisciplinarity might itself be cripped, might be made more disability-informed, is by means of investigation into its understanding of epistemic inclusivity. What counts as a discipline or mode of knowledge for transdisciplinarity in the first place, and what is left out of this account? If we speak, with Rigolot, of transdisciplinarity as a way of being, whose ways of being, whose bodies and minds, are included in this phrase? These questions might be thought to arise from crip critique – that is, external to the theory of transdisciplinarity – but, in keeping with the thrust of my argument, they might just as well be thought to emerge latently from transdisciplinarity’s own inclusive commitments. Ultimately, a cripped transdisciplinarity, like crip theory itself, moves towards knowledge that might not be linguistically formulated yet, or ever; it foregrounds risk and non-mastery over certainty and expertise; it pushes back against epistemic regimes that exclude disabled, ill and neurodivergent modes of knowing but not in order to establish a new overarching epistemology. Following McRuer’s metaphor, it asks for experiment, collaboration and revision in advance of theoretical understanding; like the act of taking a sledgehammer to concrete, it is messy. Finally, cripped transdisciplinarity is not only for those theorists or practitioners who identify as disabled or crip, or who are invested in disability-related concerns. As Kafer notes, disability theory and activism ideally benefit even those uninvested in disability issues or identity (2013: 14). Similarly, cripped transdisciplinarity can benefit theorists and artists in general by calling attention to the overlap shared by crip theory and recent constructions of transdisciplinarity. To appreciate these resemblances is to begin to see that the question at the intersection of disability and the arts need not only be about providing access to what already exists but also be
about imagining new, inclusive and – with Clark and Sirvage – beautiful forms of creativity not yet instantiated in art practice or theory.
Disability theorist Simi Linton noted over two decades ago that ‘the kinesthetic, proprioceptive, sensory, and cognitive experiences of people with an array of disabilities’ had yet to be explored from the perspectives of the disabled (1998: 140). Clark’s critiques offer one corrective to that absence, a corrective that foregrounds his position as a DeafBlind person. Furthermore, the form of Clark’s interventions reorients us to the importance of disabled testimony. A crip transdisciplinarity attends to what disabled artists and audiences say about their experiences, wants and needs – even when these claims clash, giving rise to what J. Logan Smilges calls ‘access friction’ (2023: 61). It makes space for artistic practices that bypass familiar questions about access in favour of what scholars have recently referred to as ‘creative access’, which may entail building disabled audiences and access technologies into the work itself (Cachia 2022). Crip transdisciplinarity thus, holds out even further potential for ‘adding to existing semiotic modes’, as D. Bannon (2010) describes the multimodal fusion of subtitles and film, than transdisciplinarity in its existing formulations. Although crip transdisciplinarity in the arts may be materially conjunctive, bringing together that which rubrics of ‘access’ separate, it remains theoretically disjunctive – spanning lives, practices and perceptual experiences whose theories, if they exist, may be at odds. In this sense, it resembles the social category of disability itself. This disjunctivity in turn generatively destabilizes assumptions about the bodies and minds of artists and their audiences, leaving room – in the gaps between the stars in Benjamin’s constellations – for unforeseen possibilities to shine forth. If the future of design is transdisciplinary, as Maurice Barnwell asserts, we should find in this assertion a template for the claim that the futures of other aesthetic disciplines, however they may change meanwhile, are also transdisciplinary – and crip (Barnwell 2021).
I am grateful to two anonymous reviewers for their thoughtful engagement with an earlier draft of this article and for their helpful suggestions.
This article was researched and written to the standards of Intellect’s Ethical Guidelines: https://www.intellectbooks.com/ethical-guidelines. No approvals or subject consent were required.
The authors received no specific grant from any public, commercial or not-forprofit agency to aid in the research or writing of this article.
Bannon, David (2010), ‘Subtitling: The role of trans-modal translation in global cinema’, Translation Journal, 14:2, https://translationjournal.net/ journal/52subtitling.htm. Accessed 11 March 2024. Barnes, Elizabeth (2016), The Minority Body: A Theory of Disability, Oxford: Oxford University Press. Barnwell, Maurice (2021), Design and Culture: A Transdisciplinary History, West Lafayette, IN: Purdue University Press.
Benjamin, Walter (2019), Origin of the German Trauerspiel (trans. H. Eiland), Cambridge, MA: Harvard University Press.
Cachia, Amanda (2019), ‘Sweet gongs vibrating: The politics of sensorial access’, in B. B. Hadley and D. McDonald (eds), The Routledge Handbook of Disability Arts, Culture, and Media, New York: Routledge, pp. 203–17.
Cachia, Amanda (ed.) (2022), Curating Access: Disability Art Activism and Creative Accommodation, London: Routledge.
Carroll, Noël (1985), ‘The specificity of media in the arts’, The Journal of Aesthetic Education, 19:4, pp. 5–20.
Choi, Bernard C. K. and Pak, Anita W. P. (2006), ‘Multidisciplinarity, interdisciplinarity and transdisciplinarity in health research, services, education and policy: 1. Definitions, objectives, and evidence of effectiveness’, Clinical and Investigative Medicine, 29:6, pp. 351–64.
Clark, John L. (2019), ‘Tactile Art: A DeafBlind poet on art he can touch’, Poetry Foundation, 1 October, https://www.poetryfoundation.org/poetrymagazine/ articles/150914/tactile-art. Accessed 21 May 2024.
Clark, John L. (2021), ‘Against access’, McSweeney’s, 64, pp. 30–35.
Derrida, Jacques (1997), Of Grammatology (trans. G. C. Spivak), Baltimore, MD: Johns Hopkins University Press.
Foucault, Michel (2003), ‘Society Must Be Defended’: Lectures at the Collège de France, 1975–76 (eds M. Bertani and A. Fontana, trans. D. Macey), New York: Picador.
Garland-Thomson, Rosemarie (1997), Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature, New York: Columbia University Press.
Gilloch, Graeme (2002), Walter Benjamin: Critical Constellations, Cambridge: Polity Press.
Hadot, Pierre (1995), Philosophy as a Way of Life: Spiritual Exercises from Socrates to Foucault (ed. A. I. Davidson, trans. M. Chase), Oxford: Blackwell.
Hopkins, Robert (2000), ‘Touching pictures’, British Journal of Aesthetics, 40:1, pp. 149–67.
Kafer, Alison (2013), Feminist, Queer, Crip, Bloomington, IN: Indiana University Press.
Kennedy, John M. (1993), Drawing and the Blind: Pictures to Touch, New Haven, CT: Yale University Press.
King, Andrew David (2022), Aesthetics, Accessibility, and Art Museums, Vienna: Central European University.
Kleege, Georgina (2018), More than Meets the Eye: What Blindness Brings to Art, Oxford: Oxford University Press.
Klein, Julie Thompson (2014), ‘Discourses of transdisciplinarity: Looking back to the future’, Futures, 63, pp. 68–74, https://doi.org/10.1016/j. futures.2014.08.008
Lewis, Victoria Ann (2015), ‘Crip’, in R. Adams, B. Reiss and D. Serlin (eds), Keywords for Disability Studies, New York: New York University Press, pp. 46–48.
Linton, Simi (1998), Claiming Disability: Knowledge and Identity , New York: New York University Press.
Lopes, Dominic M. M. (2002), ‘Vision, touch, and the value of pictures’, British Journal of Aesthetics, 42:2, pp. 191–201.
McRuer, Robert (2006), Crip Theory: Cultural Signs of Queerness and Disability, New York: New York University Press.
Pallasmaa, Juhani (2012), The Eyes of the Skin: Architecture and the Senses, Chichester: John Wiley & Sons.
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Reichinger, Andreas, Carrizosa, Helena Garcia, Wood, Joanna, Schöder, Svenja, Löw, Christian, Luidolt, Laura Rosalia, Schimkowitsch, Maria, Fuhrmann, Anton, Maierhofer, Stefan and Purgathofer, Werner (2018), ‘Pictures in your mind: Using interactive gesture-controlled reliefs to explore art’, ACM Transactions on Accessible Computing, 11:1, https://doi.org/10.1145/3155286.
Rigolot, Cyrille (2020), ‘Transdisciplinarity as a discipline and a way of being: Complementarities and creative tensions’, Humanities and Social Sciences Communications, 7:1, https://doi.org/10.1057/s41599-020-00598-5
Sandahl, Carrie (2003), ‘Queering the crip or cripping the queer?’, GLQ: A Journal of Lesbian and Gay Studies , 9:1&2, pp. 25–56, https://doi. org/10.1215/10642684-9-1-2-25
Scholz, Roland W. and Steiner, Gerald (2015), ‘The real type and ideal type of transdisciplinary processes: Part I – theoretical foundations’, Sustainability Science, 10:4, pp. 527–44, https://doi.org/10.1007/s11625-015-0326-4.
Smilges, J. Logan (2023), Crip Negativity, Minneapolis, MN: University of Minnesota Press.
Wang, Fuson (2022), A Brief Literary History of Disability, London: Routledge.
King, Andrew David (2024), ‘Cripping transdisciplinarity’, Journal of Arts & Communities, Special Issue: ‘Transdisciplinarity in Disability, Art and Design’, 15:2, pp. 91–100, https://doi.org/10.1386/jaac_00068_1
Andrew David King is a doctoral student in English, critical theory, and science and technology studies at UC Berkeley. From 2022 to 2024, they directed the Disabled Students Advocacy Project for UC Berkeley’s Graduate Assembly. Their work appears, or will appear, in Care and Disability: Relational Representations (Routledge, 2025), The Routledge Companion to Working-Class Literature (Routledge, 2024), The Routledge Companion to Literature and Social Justice (Routledge, 2023), A Physical Book Which Compiles Conceptual Books by Various Artists (Partial Press, 2022), and elsewhere. With San Francisco writer Mary Ladd, they edited The Long Covid Reader (Long Hauler Publishing, 2023), the first anthology of literary works by writers living with long COVID. They hold an MA in philosophy from Central European University and an MFA from the Iowa Writers’ Workshop, where, with artist Amy Childress, they co-founded Diptych: A Book Artists’ and Writers’ Reading Series. From 2019 to 2020, they were Provost’s Visiting Writer in the Department of English at the University of Iowa.
Contact: Department of English, UC Berkeley, 322 Wheeler Hall, Berkeley, CA 94720-1030, USA.
E-mail: adking@berkeley.edu
https://orcid.org/0000-0003-1190-8885
Andrew David King has asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work in the format that was submitted to Intellect Ltd.
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journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Article. English language. https://doi.org/10.1386/jaac_00062_1
Received 28 July 2024; Accepted 20 September 2024; Published Online February 2025
PAUL DEFAZIO Independent Scholar
ABSTRACT
This article explores ‘becoming blind’ as a complex process that extends beyond vision loss to encompass cultural, emotional and creative dimensions. Drawing on disability studies by scholars like Georgina Kleege and Alison Kafer, it examines how blindness has influenced the author’s work in vision-centric fields like art and design, challenging conventional narratives that frame blindness solely as a form of loss. Instead, the article presents blindness as a source of curiosity, invention and aesthetic richness, engaging with themes such as the cultural fear of darkness, the creative potential in ‘breaking’ visual norms like sharpness and clarity, and the tactile ways of experiencing space and contour. It reflects on how blindness reshapes identity, artistic practice and understandings of disability within ablebodied frameworks. Ultimately, the article advocates for expanding art and design practices to include disabled and blind perspectives, valuing blindness as a generative, transformative way of engaging with the world.
Becoming blind is a slow process. Of course, a person’s sight can change abruptly, and many have to learn to adapt to blindness quickly. But, what I refer to in this article as ‘becoming blind’ is a process that extends beyond the eye. It involves exploring, resisting, negotiating and redefining what it means to be blind in a world that privileges sightedness. Georgina Kleege articulates this well in her book Sight Unseen: ‘Writing this book made me blind’ (1999: 1). By this, Kleege means that the act of writing the book has helped her enter
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KEYWORDS blind disability disability aesthetics architecture art design
1. In this article, I have chosen not to describe my blindness using medical language or provide a diagnosis, though those terms are often useful in other contexts. I have also reserved the dominant language around blindness, such as ‘sight loss’, for when I am writing specifically about an experience of loss. Rarely do I use terms such as ‘worsening’, ‘poor’ or ‘bad’ vision even though these phrases are widely used and are often the first that come to my mind when referring to blindness. I have tried to instead define blindness in a way that feels conscious, descriptive and contextually appropriate.
into blind culture – to learn to read braille and use a white cane, among other things – and take stock of the dominant attitudes towards blindness in society and position herself in relation to them.
My particular experience of blindness has involved gradual shifts in my vision from year to year.1 However, even when it feels the same over a long period of time, I still find that my relationship to my vision changes. I experience blindness differently during different moments not only because my sight is different, but because I learn different ways of being blind. At different moments, I have held contrasting, even contradictory attitudes on blindness: wanting to avoid the topic altogether when I was younger and wanting to know everything about it later. I have avoided meeting other blind people but now I want blind community. I embrace blindness as an identity, but have a fraught relationship with claiming it, since I have not crossed the thresholds required to be called ‘legally blind’, even though I can no longer read printed books or drive a car.
In this article, I am interested in the insights blindness has brought to my practice in the two fields that I work in: art and design. These fields are vision-centric, so embracing blindness and making the work I describe below has often involved questioning conventional ways of working and dominant aesthetic tendencies. I find that even within myself there are multiple ‘blind aesthetics’ – sets of ideas and ways of working I employ that would not have emerged without an experience of blindness. Some ways of working I describe in this article are also highly visual. I do not know if those ways of working will always be interesting, or even available to me. My blindness has always included small moments of transition. The next stage of blindness has always felt unfamiliar and new. Old ways of working have had to be discarded, re-learned or translated into new ones. As disability studies scholar Alison Kafer has written, in her 2013 book Feminist, Queer, Crip, so often disabled people are falsely assumed to mourn their former bodies, fear uncertain futures and live in a state of limbo, waiting for a cure. If anything, I hope this article serves as a counter-narrative to these understandings of blindness.
The photo above represents an imagined future. For many people with progressive blindness, this kind of image serves as a prognosis – a vision of what has to come. Georgina Kleege writes that our cultural fear of blindness is ‘as ancient as our fear of darkness’ (1999: 29). In popular culture, the fade to black is used as a metaphor for death, giving the fear even more potency. This fear drives medical research and curative technologies. Companies with names like Beacon, or Nightstar, or The Lighthouse all conjure images of a world re-illuminated through restorative treatments or adaptive devices. The ‘fade to black’ is the foil for their imagined future, where sight is saved and restored to normalcy.
These saviour narratives are complicated by other understandings of blindness, ones that do not view blindness as a form of ‘loss’. In Rodney Evan’s documentary film, Vision Portraits, the blind photographer John Dugdale writes about what he calls a ‘crescent moon’ of vision along the bottom of one eye. In the film, Dugdale recalls a blind friend telling him, ‘You’re so worried about that little bit of sight. It’s ruining your life. You’re going to see how free you’re going to be’ (Evans 2019). In this anecdote, total darkness represents freedom. But in reality, very few blind people have this experience of vision. There are
so many other ways to go blind. The shape of the eye can change, affecting how light is reflected against the retina. The pupil can let in too much or too little light. Debris can get into the liquid inside the eye between the opening and the retina, clouding the vision. Cataracts on the lens can cloud the vision in different ways. Retinal cells can cease working in various patterns causing tunnel vision or missing spots in the centre. The optic nerve can be damaged, the vision becoming psychedelic patterns of light. And forms of blindness can occur in the mind, or in the outside world.
I often think about the ways blindness has added beauty to my life: the way traffic lights expand and become furred as my eyes fatigue, the experience of examining ridges of my fingerprint in the morning before I put my contacts in to correct my myopia, or how night time fully envelops me as I
try to imagine the path as I walk between patches of light from distant street lamps. None of these images are included in the sequence above. The power of the fade to black is troubled when blindness is thought of as a deviant experience of sight, but it is even more troubled when these experiences are perceived to contain beauty and value, not just loss.
The camera is a source of aesthetic norms for vision. Qualities like sharpness, clarity, level of detail, vibrance and others are connected to the medium of photography. Yet, cameras have also been important tools for visual experimentation. We can consider how blindness enters this artificial eye. How many ways are there to break a camera? The lens can be scratched, melted, shrouded, change in size or shape, allow too much or too little light into the camera body and so on. Images can become blurred as light disperses and spreads through materials placed in front of the lens. Film can be over or under-exposed. The viewfinder can be disconnected from the aperture, complicating the analogy between the camera’s eye and the photographer’s vision.
Many artists have explored the possibilities that emerge through these kinds of techniques. I think of Ann Hamilton, who has experimented with photographing objects through myopic devices like wand scanners or experimented with shooting through clouded layers like diaphanous rubber
membranes. Works by blind photographers such as Peter Eckert’s Bone Lights (n.d.) create photographs through sensory substitution. Other works, like Katherine Hubbard’s Back on Back (2015–present) or Bring Your Own Lights (2016), explore what it means to disrupt the cultural performance of sight –spectating, viewing and witnessing.
In Hamilton’s and Eckert’s work blindness becomes something inventable. I am interested in the possibilities these other forms of blindness might offer. What kinds of worlds might we discover living with them? What are the arcs of these kinds of blindness? What would we learn from prolonged experience with them? Disability activist Mia Mingus, in her talk ‘Moving toward the ugly: A politic beyond desirability’, challenges us to question societal standards of beauty and urges us to look closely at what has been ‘exiled’ (2011). Sharpness does not exist without blur, clarity without muddiness, vibrancy without dullness. When might it be appropriate to embrace these qualities that we usually try to correct? Breaking tools and questioning defaults may allow us to invent forms of blindness and embrace possibilities that have been ignored.
I once heard an anecdote about a blind artist from an elementary school art teacher. The teacher had a red/green colour-blind student in his class, and he noticed that the student did not have trouble colouring a red wagon, or the green leaves of a tree. The student simply read the colour on the crayon and coloured the objects accordingly. Another painter I know shared an opposite anecdote: his young daughter would colour tree trunks purple or leaves red and would be corrected by her preschool teacher to colour them brown and green. While telling the story, the painter pointed out that leaves are red during the fall, and at dusk when the light from the sky is more blue, tree trunks do often appear purple. We have to unlearn colour labels to perceive what our eyes are actually seeing.
In some works, I like to represent what my own eyes see. In others, I prefer to work with a more technical understanding of colour. This began during a colour theory course I took, where each student was required to achieve a perfect score on the Munsell colour test. Since I have partial colour vision, I took screenshots of the colour panels and matched the hexadecimal values to achieve the score. Now, using tools like light-meters, colorimeters or computer analyses of colour one can easily mix colour more accurately and subtly now than a trained eye.
On one level, the concept of being ‘better’ with colour is unimportant to me. In Eli Clare’s book Pride and Exile, Clare dissects the trope of the disabled person who is viewed by society as having ‘overcome’ their disability (Clare 1999). The trope can refer to the ways adaptation is portrayed as inspirational or superhuman, and to the ways that disabled people are constantly praised for simply leading their lives. Inspiration and pity can be thought of as another inversion, things that are written to be two sides of the same coin. To overcome requires the internalization of able-bodied standards of competence, success and failure.
However, having a systematic understanding of colour has also helped me to make art that I find more enjoyable since I know how to maximize contrast and create clear visual hierarchies. When I started learning colour systematically, it surprisingly became not a way to overcome blindness, but a way to continue to paint during the long intermediate period of partial vision in which I am still able to make accessible paintings that I enjoy.
Close your eyes and grip your pencil loosely in your hand. Drag the tip of the pencil along your paper and imagine you’re beginning to drive a car down the road. It’s a smooth drive on a warm day. Feel the breeze gently moving your pencil back and forth as you move down the road. The road begins to wind, and gradually, you pick up speed. Suddenly, you overshoot a turn! Your car flips over, tumbling, and you’re jolting back and forth as you screen to a halt on your drawing pad. Open your eyes.
This spoken drawing exercise was the first I did in a college drawing class. It may be the only truly ‘sightless’ drawing I was asked to do in art school. It was a precursor to an exercise called ‘blind contour’ drawing. In this exercise, students are asked to draw the outline of a subject without looking at the paper, focusing only on the object in front of them. The goal is to encourage artists to observe closely, paying closer attention to the subject than to the drawing.
The exercise comes from Kimon Nicolaïdes’s book The Natural Way to Draw (1941). In it Nicolaïdes recalls the story of an adolescent girl who ‘regained her sight after a lifetime of blindness’ (1941: 9) that he recalled reading in a newspaper. When this ‘newly sighted’ girl walked around her house, Nicolaïdes recalls, she stumbled over the furniture. The difficulty, he explains, ‘lay in that she could not yet coordinate her new sense of sight with what she had previously learned through her sense of touch’ (1941: 9).
Without sight, a pencil on a page is as useful as a white cane in a large, flat, empty plane. For the piece pictured above, I experimented by placing tactile landmarks on a sheet of paper to create a ‘blind’ drawing while controlling the degree of misregistration. The pegs acted like furniture for the hand to bump into I chose to draw an anatomical cross-section of a human eye, as often shown in textbooks. The circular arrangement of the pegs reinforces a ‘normal’
eye shape, but since most eyes are not perfectly circular. The pegs serve as a kind of ‘corrective’ frame, not allowing me to draw an abnormal eye shape. My own eye, as scanned via optical coherence tomography (OCT), is irregular. Its elongated shape does not match the idealized image of an eye found in anatomy books. This difference means that lines that appear straight and normal to me may seem skewed to others. My eyes could be called ‘deformed’, but only if we accept the assumption that there is such a thing as an ‘ideal’ eye or ‘perfect’ vision.
Once, on a trip to the Pantheon, I encountered a relief architectural plan of the building. I had never understood the relationship between the symmetry of the ‘ideal’ body and the symmetry of classical architecture as well as I did in that moment, when my two hands move easily through the drawing together. Unfortunately, the building itself was blocked off by rope partitions and the stairs lacked railings of contrast strips, so this experience of ideal fit did not last long.
Contour is a quality that can be both seen and felt. The DeafBlind aesthetician John Lee Clark includes it alongside texture, temperature, density, give, recoil, absorption and heft on a list of qualities in tactile aesthetics (Clark 2023). Reading a drawing with the hand is different from reading it with an eye. One can brush a hand over the surface of a tactile drawing to receive an overall impression, or trace with a finger, moving from detail to detail.
Ten fingers can spread through a tactile drawing, each one moving independently, which is a process entirely unlike seeing.
Without sight, contour lines drawn with a pencil are imperceptible. It is as if the lines simply evaporate into air. The only perceptible effect of the drawing is perhaps the slight greasiness that comes from rubbing the pencil many times on the same spot, or the texture where the paper becomes wrinkled, worn away and torn. Little of what is drawn with a pencil exists without sight.
However, there are also other kinds of lines: blind architects like Chris Downey and Carlos Mourão Pereira draw with wax sticks or clay. A wax stick is not just a substitute for a drawn line – it is a different kind of line: soft, pliable and meltable, and shaped by the heat of the hand (Donnelly 2016). Pereira’s tactile drawings influenced the form of his Sea Bathing Facility in Livorno, where the architecture resembles tide pools pressed into the landscape and delineated with inscribed lines (Pereira 2016). Whether a designer draws with wax, sews lines or incises them into clay, it is easy to imagine how these lines could create paths to other architectures, imparted with the incidental logic of their drawing mediums – buildings that soften in sunlight, walls laced together with cord or cables, or paths that are etched into the earth. These architects are creating a brief but meaningful tradition of tactile drawing, showing that even when vision is gone, design remains possible.
When I first started becoming blind, I found myself suddenly unable to clean my house well. I would miss spots and dirt, and not be able to find things I dropped on the floor. I mentioned this to a rehabilitation counsellor, and we set up an arrangement where once a week I would clean my house while blindfolded. When I put on the blindfold and began trying to clean, my house suddenly had new different landmarks and spatial moments: points of airflow, the edges of furniture, the heat on one side of my face when standing by a window or the material shift from tile to hardwood floor.
It is funny how sighted people view tactile worlds sometimes. Last year, I received a grant to study tactile drawings by an inclusive design group in Paris called Tactile. (This is where I found the relief of the Pantheon.) I remember
walking around the Institut du Monde Arabe, looking for the tactile cart they had advertised having for blind visitors. Instead, in one of the contemporary gallery, I found a large, bulbous sculpture whose surface looked to be inflated to the point where its skin was cracking. I touched it, and it had a slight give. I realized in that moment I had travelled all the way to Paris to experience tactile drawing, advertised by museums as inclusive. Meanwhile, everything in the world is tactile.
I continue to look for this feeling now, something obvious I might be overlooking because of how I have been taught to think. For example, while building sandcastles on a Massachusetts beach, I noticed how the cold water would fill the holes I dug in the sand. As I moved closer to the water, each hole became closer. I wanted to create a drawing using temperature for a while but had never thought of a way to do it without artificial heating or cooling elements. I started digging a series of holes, each at a different distance from the water, creating a line marked by gradual temperature shifts. Temperature shift had been right in front of me as a tactile element, waiting to be noticed.
For the first tactile drawings I made, I was working with cast concrete panels, using an etched piece of plexi-glass to create the faint textures of an urban map. I put too much water in my concrete mixture. When I rubbed my hand over the map, the concrete would crumble and the image would deteriorate.
The map was a map of the San Francisco Bay Area. I had been planning out a speculative project I called Mapping Absence. In the project I had wanted to look at an urban context that already had a strong network of disability spaces and imagine what was absent. Holes in the map would represent imaginary spaces, moments of absence that you could feel as your fingers went through the map.
Mistakes like this often led to insights. This failed study revealed a totally different kind of absence, one that I think about often. A drawing that crumbles as you read it introduces something akin to blindness into the drawing. Even though it is the tactile legibility that is deteriorating, I think of it as a blind aesthetic. The reason is that image break-down – drawings that you cannot read, cannot understand or cannot experience – is something I have had to become increasingly comfortable with. Phenomena like low resolution, faintness, imperceptibility and incomprehensibility are part of my daily life. I like the idea that I might be comfortable with these things more than an ablebodied viewer might be.
This notion of invisible drawings came up again and again in this project: drawings that I etched on glass so that they could be felt but not seen, so the image would not become distracting, or presentations that used image descriptions or incomplete drawings in place of text, drawings that are incomplete so that they are not totally legible until they are described. Even writing this, I feel a slight twinge that I am doing something inappropriate: describing works without including images of them or showing them to you, the reader. I have not included the map, or the etched glass, or the image descriptions. Through art and design school, I have grown comfortable with this experiment. When someone draws in very faint lines, or there is a bright glare on the images, or the drawings are too small for me to see, I simply assume they are there and rely on image descriptions. If this experience is acceptable for me, why should not it be acceptable for everyone else?
Blindness has been a source of meaning in my work, but it has often been a source of insecurity. I knew that I would eventually become blind when I began art school, though my vision at this point was just beginning to change. The diagnosis hung over my application process. The Pennsylvania Office of Vocational Rehabilitation (OVR) withdrew a scholarship they had offered me on the condition I choose a career path reasonable for a blind person.2 I have been asked many times how I expected to become an artist if I were going to be blind, and later was asked the same about becoming an architect. I want to live in a world where these kinds of offensive questions are not asked of disabled individuals, where it is unremarkable for a blind person to enter into these fields.
2. I do not go deeply into this issue in this article, but for more information, see Meredith Kolodner (2016)
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Sometimes, when I wonder about how this might be achieved, I think about the question: if blind people were to design everything, what would everything be like? In an interview I had with Jos Boys of the DisOrdinary Architecture Project, she talked about Carlos Pereira and his experience of a site visit to design his sea bathing facility. It involved a slow, careful observation over several days experiencing the smells, the air, touching the ground and materials, and absorbing what a space was like. Starting with different kinds of bodies and minds, and diverse ways of making sense of the world, said Boys, offered a vast reservoir of ideas and approaches to architecture (Boys 2022).
This also highlights the importance of the disability community. Disability culture has a way of upending the world as we know it, and many ideas here would have never emerged without the influence of community or exposure to the work of disabled artists, designers, scholars and activists who have chosen to publish their ideas, stories and experiences. The frictions created by a few disabled artists and designers in otherwise able-bodied spaces may highlight shortcomings of art and design as we know them today. They may point out the limitations of current education and professional practice. They may even produce generous accommodations, but this is different from supporting cultural expressions of disability in art and design.
This article was researched and written to the standards of Intellect’s Ethical Guidelines: https://www.intellectbooks.com/ethical-guidelines. No approvals or subject consent were required.
The authors received no specific grant from any public, commercial or not-forprofit agency to aid in the research or writing of this article.
Boys, Jos (2022), ‘in conversation with PLAT’, PLAT 11: Soft, pp. 256–63, https:// www.platjournal.com/shop/plat-11-soft. Accessed 20 September 2024.
Clare, Eli (1999), Exile and Pride: Disability, Queerness, and Liberation, Cambridge, MA: South End Press.
Clark, John Lee (2023), ‘Tactile aesthetics’, in Touch the Future: A Manifesto in Essays (narrated by P. Daniels), Tantor Audio, Audiobook, pp. 10:30–11:00. Donnelly, Erin (2016), ‘How blind architect Chris Downey keeps working’, Azure Magazine, 15 December, https://www.azuremagazine.com/article/ blind-architect-chris-downey/. Accessed 25 May 2024.
Eckert, Peter (n.d.), ‘Bone Light Gallery’, https://peteeckert.com/portfolio/bonelight-gallery/. Accessed 25 May 2024.
Evans, Rodney (2019), Vision Portraits, USA: Kino Lorber.
Hubbard, Katherine (2015–present), back on back, 365 Mission, Los Angeles, CA, https://katherinehubbard.com/back-on-back-2015. Accessed 20 September 2024.
Hubbard, Katherine (2016), Bring your own lights, The Kitchen, New York, 8 September–22 October, https://katherinehubbard.com/Bring-your-ownlights-2016. Accessed 20 September 2024.
Kafer, Alison (2013), Feminist, Queer, Crip, Bloomington, IN: Indiana University Press.
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Wed, 05 Feb 2025 14:21:57
Kleege, Georgina (1999), Sight Unseen, New Haven, CT: Yale University Press. Kolodner, Meredith (2016), ‘Eligible but got nothing: Hundreds of thousands of people with disabilities blocked from college aid’, Hechinger Report, 20 September, https://hechingerreport.org/800000-people-disabilities-eligible-help-got-nothing/. Accessed 20 September 2024.
Mingus, Mia (2011), ‘Moving toward the ugly: A politic beyond desirability’, Leaving Evidence, 22 August, https://leavingevidence.wordpress. com/ 2011/08/22/moving-toward-the-ugly-a-politic-beyond-desirability/ Accessed 20 September 2024.
Nicolaïdes, Kimon (1941), The Natural Way to Draw: A Working Plan for Art Study, Boston, MA: Houghton Mifflin.
Pereira, Carlos Mourão (2016), ‘Sea bathing facility’, archello, https://archello. com/project/sea-bathing-facility. Accessed 20 September 2024.
DeFazio, Paul (2024), ‘Fade to black and other notes on becoming’, Journal of Arts & Communities, Special Issue: ‘Transdisciplinarity in Disability, Art, and Design’, 15:2, pp. 101–13, https://doi.org/10.1386/jaac_00062_1
Paul DeFazio is a blind/low-vision architect and designer. He holds a masters in architecture from Rice University and works with the Institute for Human Centered Design and the Critical Design Lab. His work questions standard methods of design practice and is influenced by models of art and design emerging from critical disability studies and disability culture.
E-mail: paul.andrew.defazio@gmail.com
https://orcid.org/0009-0007-3966-7485
Paul DeFazio has asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work in the format that was submitted to Intellect Ltd.
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journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Article. English language. https://doi.org/10.1386/jaac_00057_1
Received 17 May 2024; Accepted 29 August 2024; Published Online February 2025
AARON RICHMOND concordia University
ABSTRACT
This article explores how transdisciplinarity might offer a helpful conceptual framework for taking seriously how artistic curiosities and desires converge around questions of access. My suggestion is that artists working at the borderlines of disability justice do so not only in the interest of a more inclusive, just society – but also to rediscover their working processes in new and unfamiliar configurations and collaborations. In making this point, I pursue what Natalie Loveless calls the ‘polydisciplinamory’ nature of contemporary research-creation – i.e., an eros-driven curiosity about how things are made, and a renewed care for the specificities of their sensuous form.
In 2021, I began a research project exploring what I noticed as being a cluster of creative projects aimed at making dance accessible for people with visual impairments.1 That year, for instance, the Montreal-based Danse-Cité undertook an ambitious pilot programme seeking to train a cohort of fifteen audio describers for live dance. They invited the French choreographer Valérie Castan to lead a series of workshops on the various facets of observation, diction and elocution that make performance available to blind or partially
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Wed, 05 Feb 2025 14:22:13
KEYWORDS access inclusion blindness gain blind visibility creativity affordance
1. The title for this article ‘Accessibility without a compass’ is derived from the idea of ‘Navigating without compass’ in the unpublished poem ‘Winter Wonderland in Montreal’ by the blind
poet, critic and scholar Piet Devos (2018b) The full phrase reads: Navigating without compass, counting crosswinds; at the third that nearly trips me, turn right. I am grateful to Tamar Tembeck for sharing this work with me.
2. In what follows, the word transdisciplinary is used to connote a field of emergent creative practices that are neither strictly concerned with traditional disciplinary problems, nor in the forging of new alliances between established forms of artistic craft. The transdisciplinary is a way of finding artistic orientations in a broader nexus of questions around perception, intimacy, accessibility, etc.
3. The term disability justice here refers to a ‘form of activism led by and for disabled Black, Indigenous and People of Colour. This form of activism focuses on experiences of disability and ableism from an intersectional perspective, which takes race, gender, sexuality, and class into account’. For this and other helpful definitions, see: https://www. practicingthesocial. uoguelph.ca/glossaryof-terms/. Accessed May 2022.
sighted audiences. They also organized, with the Montreal-based choreographer Émile Pineault, three year-long creative residencies under the framework of Décloisonner la multisensorialité (‘decompartmentalizing multisensoriality’). While the aspirations behind these projects were broad and various, two aims stood out to me: first, the intention to build art sector capacity, creating a generation of people who could help to ‘grow a more accessible public’ for contemporary dance; and second, to recognize and support choreographers wanting to rethink their practices through knowledges gleaned from the lived experience of blindness. Expanding beyond Danse-Cité, I began to encounter in Montreal – as well as in Vancouver, Belgium, Toronto and New York – a desire to experiment with what dance could be outside of the habitus of visual perception (Dokumaci 2018).
My interest is to revisit some of these experiments as a way of thinking further about how accessibility functions within an ecology of transdisciplinary practices.2 What happens when the desire for a more accessible art meets the desire to interrupt traditional disciplines? Where do these two pursuits give each other life and momentum? And when do they gloss over fault lines that might warrant slower analysis? In what follows, I attend to these questions. I begin each section by describing performances that produced instructive examples of a dance pursued beyond the visual. I then turn to a constellation of authors to articulate some intersections between creative research and disability justice.3
Notes from Audrey-Anne Bouchard’s ‘Camille: un rendez-vous au-delà du visual’, an immersive, multi-sensorial narrative performance held at the Maison de la Culture, Janine-Sutto, 19 September 2021:
A small group of audience members are welcomed at the outer doors to the theatre. We are asked to put our shoes and belongings into lockers and are given comfortable eye coverings and slippers. Then, one at a time we are paired with an assistant, whose forearm will guide our movements into the theatre. I initially wave my remaining free hand in front of me until my guide assures me that I won’t be led into a wall. ‘We are coming to some stairs, however […]’ With this, we proceed to a gentle gradient of no less than 25 stairs. Moving haltingly at first, we eventually find a rhythm natural to the theatre and its prolonged slope. The pleasure in finding this rhythm is inseparable from the pleasure in understanding something about the architecture of the room, and in eventually trusting my guide. No sooner is this pleasure discovered than the two of us arrive at the base of the stairs – where I am then led onto the stage and helped onto a seat. The show, conducted by six performers in the spaces around us, has already begun.
There is a lot that can be said about the scenario I have just described. For one, I am aware of controversies around simulation (here, the use of eye bands) as a creative strategy for de-centring ableist norms (Siebers 2008: 28–29; Devos and Grond 2016: 2). And yet, a proper rendering of this strategy would have to account for the various and subtle ways Bouchard, a partially sighted artist, uses this prosthetic in combination with numerous others: a light rain shower manufactured in rice that falls over an umbrella pressed into our hands; or a blanket that is suddenly folded around our shoulders with a similarly calibrated weight and timing. Here I will not do justice to such instances of non-visual choreography. My interest, rather, is to dwell on
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Bouchard’s guided descent into the theatre as a poignant model for thinking about artistic consent
The question of consent may come as a surprising first motif for someone trying to forge a link between accessible art and transdisciplinary practice. But I put it forward here as a way of giving some importance to the way things begin. Consider the artist inching quietly into an unfamiliar terrain of practices; or the collaborator entering the first session of a project described to them incoherently at best. Or consider the audience member who arrives at a performance advertised in language and imagery that are similarly opaque. What is the imperceptible social contract common to these experiences? Naturalized to the point that one forgets it is even being made, particular (though not exclusive) to the realm of the arts, I understand this implied consent to be grounded in a desire to join a community of liberatory practices. My hunch is that the desire for such a community – defined and popularized in the twentieth century under the rubric of a modernist avant-garde, and then subsequently debunked for its triumphalism of White, able-bodied, autonomous geniuses – is still lingering in a range of more quieted, interstitial demands for artistic novelty and experimentation. Common to the artist, collaborator and audience member described above, I suggest, is an implied consent to experiences that are beyond the limits of our anticipation. The desire for this kind of art is a desire to tarry at these limits: to consent to experiences which cannot be fully consented to. My aim in what follows is to explore this desire as a transversal zone, i.e., a zone that is common, and also distinctively meaningful, in the pursuit of disability justice and transdisciplinarity in the arts.
To help map out this terrain, I want to borrow from psychoanalyst and theorist Avgi Saketopoulou, whose notion of limit consent describes the paradox of wilfully engaging in practices that remain obscure to us (Saketopoulou 2023: 146–47). Arguing against what she considers to be an over-valorization of transparency in contemporary culture – the requirement that we as neoliberal subjects come together only under terms fully disclosed to all in advance (termed ‘affirmative consent’) – Saketopoulou argues for a consent that takes seriously the limits of our awareness: both inter-subjectively, i.e., in the disconnect between subjects, but also intra-subjectively, i.e., in the radical unknowabilities of each thinking-feeling body (Saketopoulou 2023: 6–8). Saketopoulou’s claim is that such opacity – such otherness – is not simply the property of an individual’s unconscious, or a ghostly veil hovering at each person’s periphery. Rather, citing the work of Jean Laplanche (1991), she says that such opacity ‘arise[s] through the intervention of the other’ (Laplanche cited in Saketopoulou 2023: 7). From the earliest stages of our psychic life, individuals are perpetually interrupted, seduced, at times traumatized or ‘shattered’ by experiences that destabilize the equilibrium of their functioning psychological habitat. The concerning tendency, as perceived by Saketopoulou, is that individuals learn to domesticate such experiences too well – finding strategies that pre-emptively forestall otherness before they feel its turbulent effects. Such strategies play out within the spaces of interpersonal intimacy and sexuality, Saketopoulou contends, but they also structure a person’s political life. Think here of the professor that whistles at full volume down the halls of a university; or the professional whose wealth from a specialized field of knowledge is confidently volleyed in markets of contemporary art and public opinion. Now think, by contrast, of someone who is regularly in a minority position in terms of race, class, sexuality or disability
– and how they might be better primed for the experience of living ‘off-centre’ than the person who regularly has the world chime back in self-approval. ‘Is it possible’, Saketopoulou asks, ‘that persons who do not get to be “at home” in the world may be more susceptible, more readily receptive to the disquiet of their own opacity?’ (2023: 10). Sekatapoulou’s objective is not to shame a White majoritarian position but, rather, to describe its widespread ‘sedimenting’ of difference (León 2020: 169) – meaning, its use of readymade categories and techniques for keeping the experience of difference at bay. The disability activist Judith Snow, for whom I worked as an assistant for many years, used to say that many people had a hard time experiencing her as anything other than a pity or an inspiration. As someone who used a specialized wheelchair, she understood very well that a person’s mental categories worked in tandem with other systems of defence: against what might be a more intimate encounter with difference or, to use Saketopoulou’s language, against the shocks and tremors of lived experience at large.
Though cursory, I present Saketopoulou’s meta-psychology to make sense of the stakes in making art that is both accessible and transdisciplinary in character. Common to both, I want to suggest, is a willingness to proceed into unmarked territory. I want to propose this practice, however, not as some gallant foray into the new but as, rather, that more intimate surrender that comes with stretching one’s field of psycho-somatic attunement. I descend into a theatre blindfolded and only regain my equilibrium when I can entrust myself to the unfamiliar rhythms felt in the forearm of a stranger. This is an instance of ‘navigating without compass’, as described by the blind poet and literary critic Piet Devos (2018b). It is a moment of re-establishing some temporary equilibrium on a plane of experience that is outside of the habitus of sight (Dokumaci 2018). If such experiences require consent, says Saketopoulou, it is not the kind that can be easily circumscribed. There is no part of me that feels that I have experienced what it is like to be blind. And yet, my sense of performance, of architecture, is now perpetually troubled by a momentary intimacy that has been choreographed to leave no visual record. Where do such experiences lead? What follows is Collin van Uchelen’s description of ‘Translations’ an immersive performance for small audiences created by All Bodies Dance and VocalEye during their 2018–19 season:
At the ring of a bell, I am led into the darkness, my hand guided to the back of a chair in silence. I sit, listening. The bell rings again, followed by footsteps, two sets, coming closer and stopping. I hear someone sit. With each ring, the sounds of footsteps recur. I hear others enter the space, pair by pair, and take their seats. I consider the nature of the venue and my location in it as the sounds fade away into the darkness.
I hear a voice: ‘I am Naomi, a standing dancer’. Her footsteps arc toward me and pass behind my seat, moving briskly away in what seems like a large circle. The sounds stop where they began and another voice comes from a different location: ‘I am Harmanie, a dancer in a manual wheelchair’. I follow her sound as she rolls away from me and wheels around the perimeter of the circle in which I am seated. Another dancer, Danielle, identifies herself and travels the circle, her footsteps falling with gentle precision. I gaze into the sound as she moves around us.
I begin to sense the shape of the space and realize we are all – audience members and performers – on the same stage together. Hearing
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the voices and names of the dancers reveals their identities in the darkness; the characteristic sounds of their movements serve as unique sonic signatures. The moving sounds illuminate the dance, connecting me with the performers even though I do not see them.
Then, Naomi’s voice again: ‘I am here’, she says, her words coming from the area in front of me. She begins to dance and I hear her move as she says, ‘My arms slash, slash! Down, down […]’. The words are embodied, integrated with the natural sounds of her movements. My guide, Daisy, is touching my back, translating the dance into tactile form. Her hands swipe outward along my spine, showing me the energetic movements of the dance as it is performed. Through the feel of the tactile translations on my skin and the words and sounds of the dancer on the floor, I begin to ‘see’ the dance.
(van Uchelen 2019)
This account was written by Collin van Uchelen, a blind artist and community psychologist who worked as artistic consultant and dramaturg to the Translations project. Although I was not present for these performances, the project quickly stood out to me amongst a series of experimental projects aimed at radically re-thinking accessible dance.4 In our conversations, van Uchelen described how the team developed their choreography by layering different sensory registers: a spatialized soundscape, descriptions of movement spoken by the dancing artists themselves and tactile descriptions of the dancers’ gestures traced with fingers on audience members’ backs. (The technique, called ‘fingerworks for fireworks’, was developed by van Uchelen as part of series works exploring pyrotechnics for non-sighted audiences.) What stood out to me about this working process was the delicate balancing act, described by van Uchelen, in neither wanting to submerge the audience in an incoherent mess of sensations (often cited as a curiosity particular only to sighted artists), nor to relegate the whole choreography to a kind of mental puzzle rewarding only the most diligent concentration (Bergonzoni and Brand 2021). Several members of the Translations project described this middle ground as ‘surrendering’ to an experience that is aesthetically coherent yet both formally and conceptually undetermined.
I am reminded of Mary Bunch’s (2021) conception of blind visuality as a mode of imaginative perception distinct from the apparatus of sight. Where the latter operates with all the well-practiced confidences of an ocular-centric culture, blind visuality describes an aesthetic mode that, according to Bunch, ‘embodies as well as reflects an ethics of non-mastery, a knowing by yielding, by respectfully being-in-relation with others’ (2021: 241). To many sighted visual artists (including myself), such an aesthetic presents a welcome reprieve from the connoisseurial distancing that has become a hallmark of artistic judgement. To many sighted choreographers, this aesthetic is a welcome antidote to an industry that forever defaults to a spectacle of technique. But what is at stake in finding a corrective to such disciplinary moorings in consultation and collaboration with people who have lived experiences of a disability? And what are the potential trespasses of a transdisciplinary art practice that orients itself to blindness as a way of knowing?
I propose that we find a second set of conceptual footholds in the work of Natalie Loveless, whose characterizations of art and artistic pedagogy seem deeply trenchant to the questions posed above. Loveless’ How to Make Art at the End of the World (2019) presents a complex rendering of some of
4. I have since learned about numerous other fascinating examples, including the work of Kayla Hamilton and Kinetic Light.
the psycho-social dynamics pertinent to contemporary art-making. Like Saketopoulou, she is interested in the dynamics of desire and curiosity that structure creative research. Focused on the university in particular, Loveless draws attention to how desire is activated in relation to artistic mentors, educators and people to whom we attribute a specialized knowledge and/ or authority. Such a figure, in the parlance of Lacanian analysis, is a ‘sujetsuppose-savoir’, that is, ‘a person who is deemed to know’ (Loveless 2019: 67). When Lacan uses this term, he evokes the seductive powers imposed by the analyst within a psychoanalytic relationship. Loveless’ move – and I think it is a helpful one – is to ascribe a similarly generative function to the role of the artistic mentor within the university. Like a good analyst, says Loveless, a good pedagogue disrupts the defensive habits of an achieved psychic equilibrium, animating a more dynamic interplay between one’s life and work. I find Loveless’ observation particularly helpful that such a dynamic is structural. There is, in other words, no innate reason why a person’s work should be oriented towards a particular figure of authority; rather, it is the authority itself – whether it is impressed upon us through the art market, the university or a social media platform – that shifts the conditions of artistic desire.
I return then to the question: what does it mean to have such a dynamic structured by a disability? Or more precisely: what happens when the authoritative artist – or when the authoritative field of knowledge – comes from a zone of human experience that has either been diminished by the pathologized logic of disability or valorized within the spiritual economies of goodwill and human charity? Recall again the words of Judith Snow as cited above: ‘It is hard for most people to see me as anything other than an inspiration or a pity’. Accompanying this maxim, for Judith, was an exhaustion at the perennial task of doing disability advocacy work. Countless times, I heard her say some version of the following: ‘I have spent my entire life fighting for the right to have a seat at the table. Now I simply want to see what happens when I actually get to speak’. And indeed, when I reflect on many of the projects I have encountered – the Translations project stands out in particular – I do think they are attempting a model of conscientious co-creation that involves artists and artistic collaborators with visual impairments. In Belgium too, Piet Devos reports on a number of ‘promising experiments’ in contemporary dance, wherein the ‘creative potential of sensory differences is no longer suppressed, but ultimately acknowledged’ (2018a: n.pag.).
The first critical distinction amongst these projects is that they recognize what so many critical disability scholars have long pointed to: namely, the embodied knowledges ‘gained’ (Kleege 2010; Garland-Thomson 2013; Thompson 2017) or ‘afforded’ (Dokumacı 2023) by the involvement of people with disabilities on the side of artistic production. While this may seem like an obvious point, in fact, some of the projects I followed presumed accessibility only (if not predominantly) as a question of who fills the seats of a theatre, without giving much attention to what happens on the side of creation. Vancouver-based artist Carmen Papalia is perhaps one of the most outspoken critics of this tendency. In his Open Access Manifesto (2018) he calls for the arts sector to account for who is making the work, curating the work and sitting on the boards of the organizations involved. Such embedded allyship on the side of production has important repercussions for the kinds of functional or logistical decisions that are made within any given performance culture. It also affects the depth and sincerity of the curiosities extended into spaces previously defined by disability. Informed by the contrast between building
and braiding as defined by Indigenous thinker and educator Elwood Jimmy in Towards Braiding (2019), Papalia repeatedly stresses that the work of accessibility cannot be reduced to building infrastructural capacity. Rather, accessibility entails the development of a community of learning that is attentive to a ‘continuum of embodiments, identities, realities and learning styles’ (Papalia 2018: n.pag.).
What seems particularly incisive in Papalia’s thinking is his characterization of accessibility as something that happens in a shared durational time. ‘Open access’, writes Papalia, [is] ‘a temporary collectively held space where participants can find comfort in disclosing their needs and preferences with one another’ (2018: n.pag.). Though basic, I see this distinction as critical for identifying projects (or moments in projects) which fall short in creating what might be a more genuinely accessible set of transdisciplinary practices. I think of the community feedback sessions following Danse-Cité’s first run of audio-described performances, which, though well intentioned, often gave more time to institutional formalities than to the conversations between the communities present. Or I think of one pre-performance touch-tour at Place des Arts – where an anxious and unthinking stage technician suddenly clapped his hands at full volume and called for a room of blind and partially sighted audience members to kindly find their way off the stage. Or I think of several accessible co-creation projects I have now witnessed whose production timeline has proven to be completely at odds with the time it takes to build a community of trust. Common to these experiences is the feeling of being part of conversations that ended just as they were beginning. Their rushed quality, I suspect, is an indication of a kind of trespass: one which reinforces at worst a kind of tokenism, and at best implies that the horizons of disability justice extend no further than simply including a visually impaired audience. By contrast, I think what artists like Carmen Papalia and Judith Snow point towards are the qualities of a shared lived time – perhaps a crip time? (Kafer 2013) – that are a requirement for any creative curiosity to emerge vis-à-vis the experience of disability.5 In Loveless’ terms, we might say that distinct to the ‘sujet-suppose-savoir’ of disability is an erotics that is particularly sensitive to the duration of time. And that the difference between appropriation and allyship, or between tokenism and a genuine curiosity, has to do with the sometimes uncomfortable slippage into the spaces of mutual learning.
The upshot of these collected observations is to point towards a convergence between two kinds of creative practice. On the one hand, a transdisciplinary art practice whose liberatory potential is tied to a consenting movement into spaces that risk the self-assuredness of their able-bodied disciplinary norms; on the other hand, a zone of disability justice work whose critical and critically embodied approaches to access are bringing a more temporal, relational, set of conditions to the fore. I gesture here towards Mia Mingus’ definition of ‘Access Intimacy’ as the ‘elusive, hard to describe feeling when someone gets your access needs’ (2011: n.pag.), or Tanya Tichkosky’s ‘politics of wonder’ (2011: 16) which reframes access as a question of human perception. These are transformations which, as Arseli Dokumacı notes, shift our definition of access from matters of policy (answerable to the yes/no questions that track institutional capacity and impact), to sites of ‘political friction and contestation’, knowledge category[ies] and ‘act[s] of perception’ (2023: 75). This is not to doubt the necessary gains produced by the former; what is being criticized is a tendency to use access measures as a way of avoiding the very people they are claiming to engage. Such avoidance, from my experience, is only exacerbated
5. Crip Time appears in the title of an essay by Ellen Samuels, in which she quotes her friend Allison Kafer as saying: ‘rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds’ (2017: n.pag.).
by a climate of fear accompanying a cultural moment which can be harshly punitive at all ends of the political spectrum. For both an individual artist and an artistic organization, the risk of getting access wrong acts as a deterrent against the very sites of ‘political friction and contestation’ that come with a more responsible, sustained, engagement with experiences typically excluded from the realm of the arts.
In scholars such as Loveless and Saketopoulou, I see a way of resituating the social within the curiosities animating contemporary art. Moreover, by reading the social through an experience of opacity – i.e., the seductive yet shattering newness of another as they enter our field of awareness – these psychoanalytic models avoid the reductionist categories that sometimes accompany gestures towards access, while keeping ableist hierarchies in play. In trying to imagine the alternative, it is possible to think of what Christine Leon calls an ‘ethical curiosity’ (2020: 180) bent towards that which is opaque in others but also that which is opaque within us. By such a model, transdisciplinarity shares with the work of access the desire to move beyond the spaces of habitual embodiment. It seeks, in collaboration, something between a wedge and a prompt for a mutually disruptive care.
The research undertaken for this project passed an ethics board review at McGill University. File #: 21-12-006. Project Title: From Access to Integration: Dance Beyond the Visual.
This article has been funded by a postdoctoral fellowship with the Fonds de recherché du Quebec. File number 311107.
Bergonzoni, Carolina and Brand, Naomi (2021), ‘Translations: A dance for the non-visual senses’, Performance Matters, 5:1, pp. 149–57.
Bunch, Mary (2021), ‘Blind visuality in Bruce Horak’s “Through a Tired Eye”’, Studies in Social Justice, 15:2, pp. 239–58.
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Devos, Piet (2018b), ‘Winter Wonderland in Montreal’, unpublished.
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Laplanche, Jean (1991), ‘Masochism and the general theory of seduction’, in The Unfinished Copernican Revolution: Selected Works, 1967–1992, New York: Unconscious in Translation, pp. 541–61.
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Loveless, Natalie (2019), How to Make Art at the End of the World: A Manifesto for Research-Creation, Durham, NC: Duke University Press.
Mingus, Mia (2011), ‘Access intimacy: The missing link’, Leaving Evidence, 5 May, https://leavingevidence.wordpress.com/2011/05/05/access-intimacythe-missing-link/. Accessed 1 March 2021.
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Saketopoulou, Avgi (2023), Sexuality Beyond Consent: Risk, Race, Traumatophilia, New York: New York University Press.
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Thompson, Hannah (2017), ‘French and francophone disability studies’, French Studies, 71:2, pp. 243–51.
Titchkosky, Tanya (2011), The Question of Access: Disability, Space, Meaning, Toronto: University of Toronto Press.
van Uchelen, Collin (2019),‘Seeing, and not seeing, the dance’, Dance International, 47:3, pp. 32–33.
FURTHER READING
Brand, Naomi, Kirkland, Steph and Uchelen, Collin van (2019), ‘Translations: A research project for blind and partially sighted viewers’, Dance International, 33:3, https://www.vancouverballetsociety.com/2019/08/translations-researchproject-blind-partially-sighted-viewers/. Accessed 1 March 2021.
Papalia, Carmen (2013), ‘A new model for access in the museum’, Disability Studies Quarterly, 33:3, https://dsq-sds.org/index.php/dsq/article/view/3757/3280
Accessed 1 March 2021.
Richmond, Aaron (2024), ‘Accessibility without a compass: Transdisciplinary choreographies beyond the habitus of visual perception’, Journal of Arts & Communities, Special Issue: ‘Transdisciplinarity in Disability, Art, and Design’, 15:2, pp. 115–24, https://doi.org/10.1386/jaac_00057_1
Aaron Richmond is an interdisciplinary artist and postdoctoral fellow at the Milieux Institute for Arts, Culture and Technology at Concordia University. He holds a Ph.D. in art and architectural history from McGill University, an MPhil in intellectual history from the University of Cambridge and an MFA from
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the Maryland Institute College of Art. Since 2021, he has been involved in developing Access in Counterpoint, a national research project exploring dance for blind and partially sighted audiences. His critical writing has appeared in Brooklyn Rail and e-flux.
Contact: Concordia University, 1515 Rue Sainte-Catherine W. EV Building, 11.455 Montréal, Quebec, H3G 2W1, Canada. E-mail: mittelman.richmond@gmail.com
https://orcid.org/0009-0001-2155-7225
Aaron Richmond has asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work in the format that was submitted to Intellect Ltd.
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journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Article. English language. https://doi.org/10.1386/jaac_00064_1
Received 17 May 2024; Accepted 15 September 2024; Published Online February 2025
ELIZABETH SWEENEY Independent artist
ABSTRACT
What if artists premised their artistic practice on the assumption that their audience or the audience that mattered, were Deaf, Disabled or Mad? How would we approach our work then? Starting with this main question, my work as an artist is focused on centring my own access needs, both as an artist and viewer, while also striving to create work that is accessible to others. My own neurodiversity draws me towards abstract gestures and forms, so I developed a framework to create works of art, interdependently with other Crip and Mad artists. This short entry describes how this method was developed and a manifesto detailing this creative framework. I have also included several images of collaborative works generated through this method.
I am a visual artist, a cultural worker and an emerging curator. I am also a neurodivergent queer of Acadian settler descent. My focus for much of my eighteen-year career has been centred on Deaf and disability arts, arts accessibility and how they intersect with curatorial practice. During most of these years, however, my own visual arts practice had been very quiet. This is in large part because the work I knew how to make did not feel relevant anymore. It did not speak to my own experiences of disability and I did not fully know how to make work that was premised on the assumption that a much broader range of audiences – including myself and the artists around me – mattered.
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KEYWORDS disability art performance art sculpture participatory art adapted art collaboration accessible
In order to move my own artist practice forward I started with this question: what if artists premised their artistic practice on the assumption that their audience or the audience that mattered, were Deaf, Disabled or Mad? How would we approach our work then?
To explore how I could answer this for myself, as both a disabled artist and an audience, I went to work in the studio, surrounding myself with the conditions, materials and people I depend on to create and problem-solve. I knew this work needed to be rooted in interdependent Crip–Mad wisdom, so I sought out the support of a long-time friend, inclusive designer, collaborator and Mad artist, JD Derbyshire.
Working from the inclusive design tenet of ‘one size fits one’, we established our individual access needs. JD’s included ongoing consent, playfulness, humour, improvisation and scale-ability. An ability to opt in and opt out. Mine included collaboration, low sound and light stimulation, few words, comfortable spaces, lush materials and textures, rich colours and disrupted norms. My most important access need, however, was to create non-representational abstracted forms, installations and compositions. These are the art experiences and methods of creation that stimulate both sighs of relief and sparks of excitement for me. I am liberated and free. I am not confined to the heavy labour of decoding and defining or trying to understand what is and is not being represented or said. I do not need to endure words or follow along. However, in much of my accessibility work, abstraction had always been the least accessible art form and the hardest to audio describe, interpret or adapt to alternative formats. It was this aesthetic access conflict that was really at the heart of what was keeping me from making work for so long.
After establishing our access requirements, we walked, ate BBQ and found non-dairy affogatos. We also took some time to watch and re-watch the pivotal and foundational video work by the late Mel Baggs’s (2007) ‘In my language’, which helped anchor our work and our conversations. Baggs’s work is an exploration of their neurodivergent ‘native language’ which includes sonic, rhythmic and sensory-based expressions, in response to and in conversation with their environment. Although not necessarily Baggs’s intention, I see their work as part of my own understanding of the intersections between disability, experiential and relational practice and abstraction and so, an important place to start from.
Then JD and I started to create.
We created through mutually agreed-upon boundaries and elements – the selection of the materials to work with, the space we would use and how we would decide when the work was done. We worked together playfully, with
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the materials in a way that felt like the creation process was a performance in and of itself. We would take and move objects and materials around our space, pass them back and forth, put them away. The installation made from this dance was both a finished work and evidence of our creation-performance. The connections between interdependence, disability and relational aesthetics were instant and obvious.
Following my time with JD, I experimented and created with other artists, including Carmen Papalia, Nancy Viva Davis Halifax, Kim Fullerton and
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Tiphaine Girault-Bath. Each time adapting the creation process to meet each of our bodies, sensory learning styles and minds. Sometimes the focus of the work was on sounds, or touch, or zooming in or zooming out. Sometimes we sat down and worked across the table, sometimes we worked in silence and drew and other times we moved and wheeled around, inside and out, playing and dancing with our materials. While I prefer to work interdependently with other artists, I have also adapted this method, so I can create solo works, focusing on my individual creative processes, access needs and aesthetic desires. From all of this collective work, a name and a list of tenets emerged.
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Interdependent experiential abstraction:
1. Is the non-representational aesthetic outcome of an interdependent exploration of materials, between artists whose bodies, minds and languages do not conform to ableist societal expectations or norms;
2. Stimulates both sighs of relief and sparks of excitement;
3. Strives to create spaces and experiences that are physically comfortable and conceptually uncomfortable;
4. Prioritizes the use of visual and non-verbal communication;
5. Can be scaled up or scaled down;
6. Adapts to the artists participating and is built upon the premise that one size fits one;
7. Created only through ongoing consent by all those involved;
8. Is created in free, accessible, caring, brave spaces without the presence of oppressors;
9. Is premised by the understanding that Deaf, Disabled and Mad bodies are inherently disruptive to current constructs of what abstraction is, who it is made by and who it is intended for;
10. Is created, through and with, each artist until the work is done.
I consider the finished works that come from this process and the performance of its creation, as intended and adapted for an audience of just the
artists involved. One size fits one. I am inviting other Deaf, Disabled and Mad artists who want to experience this work to come and create with me, with each other or on their own.
I recognize that this work then becomes ‘art for artists’, an irony that is not lost on me, in a conversation on art’s accessibility and abstraction. Maybe small audiences can be let in, but for now, I am trying to allow this exclusive inclusion to just exist. Let us centre ourselves first, as both Crip creators and consumers of art, knowing we are experts at bending and adapting to those around us and see what happens next.
This article was researched and written to the standards of Intellect’s Ethical Guidelines: https://www.intellectbooks.com/ethical-guidelines. No approvals or subject consent were required.
This work was supported through a two-year Chalmers Art Fellowship, awarded by the Ontario Arts Council.
Baggs, Mel (2007), ‘In my language’, YouTube, 14 January, https://www.youtube. com/watch?v=JnylM1hI2jcg. Accessed 13 October 2024.
Sweeney, Elizabeth (2024), ‘Interdependent experiential abstraction’, Journal of Arts & Communities, Special Issue: ‘Transdisciplinarity in Disability, Art and Design’, 15:2, pp. 125–32, https://doi.org/10.1386/jaac_00064_1
Elizabeth Sweeney is a visual artist, an arts researcher and a curator. She is also a neurodivergent non-binary queer of Acadian settler descent, who grew up in rural Nova Scotia. She has a BFA in studio art from Concordia University (2001), a B.Ed. from the University of Ottawa (2005) and an MA in critical disability studies from York University (2012), where she focused on disability art and contemporary curatorial practice. Elizabeth frequently presents and guest lectures on the topics of art criticism, activist museum praxis and contemporary disability arts. She is a founding member of the Black Triangle Arts Collective and in 2019, Elizabeth was awarded a two-year Chalmers Art Fellowship for her project Premise/Shift. She is currently working on a large-scale installation about MAID. Elizabeth shares her time between the traditional unceded territories of the Algonquin Anishnaabeg (Ottawa, ON) and Mi’kmaq peoples (Mavillette, NS).
E-mail: premiseshift@gmail.com
https://orcid.org/0009-0004-7968-1677
Elizabeth Sweeney has asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work in the format that was submitted to Intellect Ltd.
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journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Article. English language. https://doi.org/10.1386/jaac_00058_1
Received 1 March 2024; Accepted 10 May 2024; Published Online February 2025
MARÍA JOSÉ GARCÍA VIZCAÍNO
Montclair State University
ABSTRACT
Some of the current art haptic practices offered to the blind use touch as a substitute for sight, contributing to perpetuate an ocularcentric and thus ableist paradigm in the arts. This article draws from the need to elevate the sense of touch to a genuine source of knowledge and eradicate the conception of being a complement of sight. In particular, the aim is to show how sculpture tactile encounters led by artist Lucia Beijlsmit can enrich the artistic experience of sighted and non-sighted participants and reflect upon the functions of touch in art appreciation. This shared exploratory exercise did not actually feel as ‘access’ but rather as a form of close and personal communication. This is why this project entails a notion of access not conceived as a service provided to fix a problem, but as a form of human connection.
On 21 September 2023, I attended the opening of the exhibition Lo que oculta la piedra (‘what stone hides’) by artist Lucia Beijlsmit at the art gallery Cambio de sentido housed at the Fundación ONCE in Madrid. After an introduction about her life and work, Lucía began explaining the main features of each piece, and a silent group of visitors listened to her words quietly. Then, after one of her explanations, I asked: ‘Can your artwork be touched?’ and Lucia hurried to say: ‘Please, do touch!’ And then, people started caressing surfaces
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KEYWORDS sight blindness sculpture accessibility haptic encounter artistic experience access intimacy
1. The term ‘ocularcentrism’ was coined by Martin Jay (1988) and basically refers to the fact that ‘historically within Western society, vision has been lauded as the most sophisticated and intellectual of all our senses’ (Hayes and Rajko 2017: n.pag.).
2. Talking about the tactile images created for the Tate Modern’s exhibition Raised Awareness, Candlin states the following:
The faithful reproduction of visual images in raised line format assumed that touch operates in the same way as sight; that once the visible lines and tones are rendered tactile, they will be as comprehensible to the hand as the eye, which is not in fact the case.
(2010: 129)
with the palm of their hands, tracing curves with their fingertips and placing their arms inside holes. I could tell by looking at them that they were having fun, and the glow on their faces revealed a genuine feeling of discovery and art enjoyment. The hands-on component transformed a traditional exhibition into an interactive, sensorial and dynamic event. The ‘Please, do touch’ sentence changed the energy in that exhibition room completely. In the reception afterwards, Lucia and I had the opportunity to exchange information about our work, and she invited me to visit her studio and home in Salorino (Cáceres, Spain). I accepted. It was then when we decided to organize tactile encounters with her sculptures in January 2024. Those conversations gave me the foundation and the confidence to embark myself on this collaborative experiment. Part of the results of this experience is what I share in this article.
The role and presence of touch in art museums have changed dramatically in the last decades: from being something forbidden, undesired, unauthorized and of ‘dubious’ value (Candlin 2006, 2007, 2017) to being the focus of specific exhibitions or touch tours in prestigious art institutions. Access provision has greatly contributed to give touch a more prominent place in the art scene as an essential tool for blind and visually impaired museum-goers to enjoy art. Yet, many of these access initiatives consist of handling tactual materials to non-sighted visitors in order to convey a mental image of the original piece, hence contributing to perpetuating an ocularcentric and, thus, ableist paradigm in the arts.1 In other words, those tactile objects were created for people who cannot see the artwork. If those people could see, would those objects have been created in the first place?
The need to build a mental image and the importance of identification of contours are features of a visual culture that is being imposed on the blind person with these types of tactile tools. If the goal is to provide the nonsighted individual with a mental image of objects by tracing shapes, touch is being treated as a substitute for sight. A blindfolded sighted person touching a relief picture or tactile diagram is able to outline contours and identify elements and forms in their mind, but blind people (especially congenitally blind) do not build mental images as sighted people do, mainly because touch does not function as sight.2 Forcing the non-sighted person to experience art as the sighted is an ableist and ocularcentric approach to accessibility.
The other aspect that seems problematic about tactile images or reliefs is the lack of emotional engagement with the artwork. Tracing contours, forms and, in the best of cases, feeling different textures has value in it because one can get information about shape and content, but it does not necessarily connect visitors with the piece at an emotional level. Actually, many blind art lovers find it stressful and devoid of any real artistic meaning (García Vizcaíno 2024c) or do not consider that identifying content is the most important part of an artistic experience (Cavazos et al. 2021). That emotional connection of the blind individual with the artwork achieved through the sense of touch is hard to be generated by ideational representations of images in the form of embossed diagrams, raised dots and lines or copies in plaster or polyester replicating famous masterpieces. That spark is likely to be experienced by the tactility of materials, by the sensations evoked by different textures, by the sense of discovery and surprise and by a deep appreciation of the technical
intricacies of artists’ skilfulness. Some examples of this type of art engagement through touch, apart from the current study, can be found in the sculpture exploration by blind students at the Alvar Aalto Museum in Jyvaskyla, Finland (Perttunen 2003), in Fayen d’Evie and Georgina Kleege’s tactile encounters with sculptures at KADIST, San Francisco (d’Evie and Kleege 2018), in the tactile practice of Golem by Elizabeth Higgins O’Connor at the Contemporary Jewish Museum in San Francisco (Kleege 2021) or more recently in the touch experience of ‘Nydia, the Blind Flower Girl of Pompeii’ by Randolph Rogers at the Metropolitan Museum of Art, New York (Kleege 2023).
The benefits derived from touching the ‘real’ thing and allowing visitors to engage tactically with original sculptures have long been advocated by scholars clashing with issues of authority and curatorial practices ( Candlin 2017; Christidou and Pierroux 2018; Classen 2005; d’Evie and Kleege 2018; Kleege 2021). This article draws precisely from the need to elevate the sense of touch as a genuine source of knowledge and not as a mere complement of sight, as the organic way to appreciate three-dimensional art not only for non-sighted visitors, but for all beholders. In the last years, there have been collaborative approaches where blind and sighted artists and researchers work together with accessibility experts to create more dynamic ways to engage all visitors into art (Neves 2016; Eardley et al. 2016, 2022; Reviers and Hanoulle 2023). Nevertheless, even in some of these, tactile experiences are conceived as contingent on visual artwork taking the form of raised images and tactile props at one point of the process or another.
The present study takes that trend a step further. This case of collaborative accessibility includes not only access facilitators and sighted and nonsighted visitors but also the artist herself. By including the author, who invites participants to touch her pieces (not replicas, but the ‘real’ thing), access is transformed into a more intimate encounter with art. It is a more personal conversation with sculpture that is not actually felt as access but rather as an exchange of information and experiences.
Lucia Beijlsmit is a Dutch sculptor based in Extremadura (Spain). She is hard of hearing and uses rocks (marble, diabase, granite and alabaster) to create sculptures, some of them emitting sound (https://www.luciabeijlsmit.com/, accessed 4 December 2024). When asked if her hearing condition has led her somewhat to create these singing stones, she honestly replied that she does not think so since music does not play an important role in her life, unlike art or books. However, she shared that the motivation for adding sound to her pieces is the fact that she enjoys giving ‘things’ a different function from the original or intended one. Hardly anybody has heard a stone singing, and on rare occasions, marble sculptures are hanging on a wall pretending to be a giant’s brooch or chain or even his breakfast (her croissant piece), for that matter. Marble sculptures are supposed to be standing on a pedestal for people to admire.
Precisely the title of her exhibition, Lo que oculta la piedra (‘what stone hides’), reveals another aspect of rock sculpture that audiences are not used to experience: the inside. With her careful and always respectful carving and pecking, Lucia exposes what lies in the interior of rocks: unexpected colours, textures, crystals, brightness and fossils. She amazes us by showing how a stone that apparently is dull and static conceals stunning-coloured veins,
3. The word hoja in Spanish means both ‘leaf’ and ‘sheet or page’ and both meanings are enclosed in this artwork.
striking shades of shiny black, sounds and even movement, making her artwork a genuine spectacle appealing to eyes, ears and touch equally. As in life, most beautiful things cannot be seen at first sight because they reside in the unseen.
Her exhibition consisted of seventeen sculptures made of marble, alabaster, granite, diabase, limestone and sandstone. For this study, we chose five, each one made of different rocks: sandstone, diabase, granite and marble. Due to length restrictions, I will be reporting the results of the tactile explorations of three of them: the sounding piece Arpa, which is a 16-kg artwork piece resembling a harp (Figure 1), Hoja (‘Leaf’/‘Page’),3 which is a granite 10-kg piece
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held by an iron cast (Figure 2) resembling the page of a book half-opened, and the intriguing Equilibrio, which is a diabase artwork of 65 kg held by springs that used to be the shock absorbers of an all-terrain vehicle welded on a disk from a scrapyard. With a slight blow, it moves like a pendulum (Figure 3). The reason for choosing these pieces responds to the fact that all of them involved different materials, including recycled objects, which makes the tactile experience more interesting. In addition to that, some pieces provided an additional sensorial experience: auditive in Arpa and proprioceptive in Equilibrio
For this study, participants were recruited from tactile art encounters that took place in 2023 at the museum that the Spanish National Blind
Organization has in Madrid (Museo Tiflológico de la ONCE: https://museo. once.es/, accessed 4 December 2024). Since participants enjoyed so much those encounters (García Vizcaíno 2024a), they were invited to participate in this study, this time with the option of being accompanied by a sighted person. Ten guests accepted the invitation: five sightless (Javier, César, Salvi, Virginia and Ana) and five sighted (Teresa, Juan Carlos, Nuria, Guadalupe and Clara). In some cases, they explored together (Javier with his daughter Teresa or Salvi with her husband Juan Carlos and her friend Nuria), and sometimes they did it individually (Virginia, César, Ana, Guadalupe and Clara). Participants were scheduled on individual appointments of one hour and 30 minutes for each person or group. We wanted to make sure that they had plenty of time to
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explore the pieces at their own pace, interact with the artist and enjoy the art in no rush whatsoever.
Upon arriving into the art gallery, participants were greeted by the artist and myself. Lucia would introduce each piece by reading a description (García Vizcaíno 2024b), and guests would start the tactile exploration, making comments, sharing their expertise and sometimes personal experiences as well. While participants were touching the artwork, Lucia would offer insights about the process behind each piece and answer questions from the visitors. I video recorded the explorations (participants had previously signed informed consents) in order to analyse both verbal feedback and tactile strategies later. In addition, I suggested tips about where, why, and how to touch her sculptures to enjoy them to the fullest.
Feedback received by blind and non-blind participants emphasized the enhancement of the artistic encounter by this shared access experience and pointed out feelings of freedom, trust and a sense of being accompanied by accessing art. Listening to their words and watching the video recordings, I realized this is a case of what Disability Justice activist Mia Mingus calls ‘access intimacy’:
Access intimacy is that elusive, hard to describe feeling when someone else ‘gets’ your access needs […]. In my life, access intimacy is something that has been hard won, organic or at times even felt magical. It has felt like an unspoken, instinctual language between different people, like an entirely unique way of being able to communicate and connect. (2011: n.pag.)
The aim of this study was not just to offer access in the form of touching Lucia’s sculptures, but rather ‘how’ we would implement that tactile experience. I did not have the notion of access intimacy in my mind when I envisioned this study, but what I was sure about was that it would not be ‘forced access’ (offering tactile images of an artwork), ‘fake access’ (handling tactile replicas of original sculptures) or ‘unauthorized access’ (rushed and forbidden). Those forms of access would be survival, but not true human connection (Romero Fresco 2024). From the very beginning, I wanted to create a safe space where artists and visitors felt free to touch, inquire, disagree, and, most importantly, enjoy sculpture more fully. I do not recall this study as a service provided from the artist and access facilitator (me) to the blind and the sighted, and, according to participants’ comments, neither do they. It was an access that grew organically during the encounter thanks to the comments and suggestions of all stakeholders. In this sense, it fostered interdependence and was a truly liberatory experience (Mingus 2017).
Next, I illustrate why this study can be considered an example of access intimacy by highlighting some of the most salient features of the analysis.
As Georgina Kleege, writer and scholar specialized on blindness and art, states, ‘[t]he rewards of touching a work of art often have very little to do with what the artwork represents. It has more to do with the tactility of the materials and observations about how the artist manipulated and shaped them’
(2022b: n.pag.). Indeed, participants were truly engaged in the haptic exploration, asking Lucía questions ranging from what tools were used to obtain certain effects on the stone to where that rock was obtained. The artist’s answers made participants gain a profound appreciation of the artwork by fully understanding the technique behind the sculpture.
In the case of her granite piece, Hoja, the artist brought her bush hammer, a chisel with 3 × 3 pyramidal teeth. With each blow of the hammer, she leaves nine rough marks on the surface. She handled it to the participants for them to touch (a couple of them compared it to Braille raised dots, although instead of six, there were nine) and explained that she used this tool on the outer part of Hoja to emphasize the contrast with the inside of the curve, which is polished. Also, she added that polishing the inside took her three days in comparison with polishing a section of her diabase artwork, Arpa, which took her three weeks, given that this rock is so hard compared to granite. Therefore, being informed about the technique in detail not only contributed to a better understanding of the piece, but also enhanced their knowledge about rocks and the effort involved in carving stone for a sculpture.
Upon touching the shiny black section of diabase piece Arpa that took Lucia three weeks to polish, all participants asked in awe how she could get such a smooth surface out of such a hard rock. The artist explained that she uses first a diamond cutting disc ∅ 125 mm, then a diamond rough grinding disc and later another rigid disc of carborundum grit 40. Then, she uses sandpaper on a flexible rubber plate with Velcro of 60 grit, and she gradually
increases the grit as she progresses: 80, 120, 180, 220, 300, 400, 600, 800 and 1200. If you skip a grit, you may end up with tiny scratch lines that show through the polish, so you must do all the steps, which requires time and physical strength.
This extra smooth polished section of Arpa is almost hidden and cannot be felt unless you squat down and touch it. Since it is not seen, it went unnoticed for most sighted participants. Teresa shared with us that only because she saw her father (her non-sighted companion) almost on his knees touching something with a joyful expression on his face, did she realize that she had missed
something important. Then she bent down and touched. She was impressed and glad that she got to feel the best part of the piece.
Another prompt that Lucia brought to illustrate the artistic process behind Hoja was a silver bracelet, which was a fundamental source of inspiration in the creation of this piece (see Figures 4 and 5). ‘The elegance, design and details of this jewel are reflected in this piece, endowing Hoja with a unique aesthetic charm’, as she pointed out. Salvi got excited when she heard that Lucia had brought the bracelet, and a broad smile was on her face when she felt it. After that, Salvi touched Hoja and exclaimed: ‘Wow, the bracelet!’ She was beaming. Later on, after the tactile exploration, she shared with us that being blind since birth, she appreciates when miniature replicas of a building or sculptures are available prior to the actual tactual exploration because people with congenital blindness have a very different spatial awareness than individuals with acquired blindness.
From the very beginning of the study, the artist opened up to the group, sharing personal anecdotes and some fears in her artistic practice. For instance, she told us that in some pieces, such as in Arpa, the deep cuts on the inside were made by her stonemason friend Alonso Gómez, using a disc with a diameter of 50 cm. She confessed that she does not dare to work with such a large and heavy radial saw. Not only did Lucia reveal her fears, but also her passions. When exploring Arpa, one of her sound pieces, she infused in us her fascination about the possibility of extracting a delicate sound out of such a hard rock (diabase) by carefully stroking the cuts of the inside: the harder the rock, the clearer the sound it emits. The ability of a stone to produce sound is an aspect that she finds exciting and captivating, and so did the participants.
In addition to bringing their personal views, participants brought aspects of their professional background that were relevant to appreciate the artwork. In a lecture about the dichotomy of subjectivity vs. objectivity in audio description, Kleege stated the following: ‘Who are you and what are you bringing to the audio description? Maybe you are an artist, a writer, an architect. What does your knowledge bring?’ (2022a: n.pag.). To the listener, that knowledge may be interesting and certainly, there is also something empowering in bringing who you are for the collective enjoyment of the group. There were multiple examples of this in the present study. Next, I present one of them.
When touching Equilibrio, Javier, who is a physical therapist, asked Lucia how she got such a perfect curve, and she offered him a thorough explanation about three of her different radial discs, the differences between each one, and the many steps involved in polishing. Yet, Javier did not refer to the flat surface. He was not mesmerized observing how smooth the curve was, but by how precise the angle of the two merging curves had been carved exactly as saddle joints are found in human anatomy:
This curve is perfect and so it is this other curve above the first one. This is called in anatomy ‘saddle joints’ because where the saddle has convexity, the rider has concavity. I’m not amazed by the smooth touch. I know that if you polish it over and over again with a very fine grit, you will get that effect, but to achieve this perfection in the curves is what strikes me.
Another outstanding feature of this tactile experience was the multi-directional nature of the practice. Access in our study was indistinctly facilitated by the artist, the access facilitator, the non-sighted participant or the sighted. This way, the artwork itself evolved as it got enriched by different participants with diverse points of view and observations, and everyone learned from these new layers of meanings.
Access from the artist to the participants took the form of extra information that was not mentioned in the descriptions or in the answers to the questions posed by visitors. In turn, non-sighted participants offered recommendations to the artist for a better enjoyment of the haptic practice as well. For example, one of the best tips was the one given by Javier to Lucia about the piece Hoja. He showed Lucia how the iron support holding the granite piece was too high and prevented the opening of the piece from being tactilely explored properly. And he proposed a possible solution: placing an iron bar underneath to lift the stone. Javier’s observation was very pertinent because the support should help to better enjoy the piece, not hinder the tactile perception and, therefore, the aesthetic pleasure.
Another interesting tip came from Ana on touching the sounding piece Arpa with the chopstick that Lucia had brought. She suggested that there should be several sticks made of different materials (metal, iron and plastic) to compare different sounds emitted by different sources. On that very same note, Javier suggested that he would have placed different sticks of varied lengths hanging from a wooden structure on top of the harp piece so that one could move it and the sticks would elicit different sounds.
On other occasions, blind participants provided information related to the piece that the artist herself was not aware of, fostering curiosity and critical thinking in the group. For instance, upon touching the sound sculpture Arpa and listening to the sound coming from it, Virginia pointed out that it sounded like a txalaparta, which is a Basque instrument. She shared that she is from the Basque Country and is used to that sound, and she went on explaining to us how she plays it. Lucia was really intrigued at this moment and said she would look into that further. However, about that very same sound, another day, Javier said it sounded more like a xylophone. Lucia agrees and admits that ‘xylophone’ would be a better name for that piece than ‘harp’. This is a case where the sighted artist focuses on shape, whereas the blind visitor focuses on sound.
The results of this study show how touch can transform the access provision from being a service provided unidirectionally – from the artist towards the blind or from the blind to the sighted – to a more personal multi-directional and meaningful form of access. In other words, access functioned here as a trial-and-error exchange that engaged disabled and non-disabled people in conversation (Romero Fresco and Dangerfield 2022), creating a positive atmosphere conducive to critical thinking, creativity and fun. This is proven by the numerous examples of laughter and jokes made during the tactile encounters. As Mingus says, ‘[t]here is a good feeling after and while you are experiencing access intimacy’ (2011: n.pag.). Certainly, access in this study fostered openness and reliance from the very beginning. On the first day of tactile exploration, with the first group of participants, Lucia started reading
the first description, and her voice trembled. She admitted that she was very nervous, and Salvi rushed to say, ‘Tranquila. Somos de confianza’, which is equivalent to saying ‘Relax. We are family’ or more literally ‘We can be trusted’. From then on, it was a safe space for sharing and building trust.
Indeed, if there is a bodily sense likely to promote access intimacy in the art setting, it is touch. Touch allows direct contact with the artwork, with no mediation coming from audio guides, audio descriptions or someone else. Hence, touch involves intimacy. Intimacy with the artist through the straightforward physical contact with their sculpture which comes directly from their hands. In this regard, artist Emilie Gossiaux, who led two touch tours of her installation at the Queens Museum in NYC in April 2024, declared on a recent interview for the New York Times ‘I think of touch as a love language; it’s very intimate’ (Sheets 2023: n.pag.).
In addition to the role of touch as the triggering force to create this unique form of access ‘beyond access’, touch allowed blind and non-blind participants to get the same type of experience instead of one that was provided to replace the lack of sight. That is, touch was not meant to fill the gaps produced by blindness but to invite all visitors (regardless of their degree of sight) to participate in the same artistic event. Actually, on many occasions, touch was the only way to access the piece or feel certain textures: the smoothness of a diabase surface cannot be perceived visually. One can guess by seeing it that it is likely to be smooth, but one cannot get the certainty (and, of course, the pleasure) until one touches it. As Lucia said: ‘Softness cannot be seen. You can guess something is soft, but you cannot see it. Touch in my work helps you experience that beauty’. Yet, there were instances where sight was key to perceive certain aspects of the stone, such as the mica or the shining crystals of the minerals, which are not obvious to the touch. This is why the haptic exploration in pairs of sighted and non-sighted was a fruitful collaborative exercise that led to a full aesthetic intimate encounter.
I would like to thank the artist Lucia Beijlsmit for her enthusiasm, time and passion devoted to this project from the very beginning. Also, my deepest gratitude to the Fundación ONCE for allowing me to organize the tactile encounters at its exhibition room Cambio de sentido in Madrid.
This study received approval by Montclair State University’s Institutional Review Board (IRB): IRB-FY22-23-2773. All the photographs of the artwork used in the article were permitted to be used by the artist Lucia Beijlsmit, and I submitted the permission to the editor long time ago.
The authors received no specific grant from any public, commercial or not-forprofit agency to aid in the research or writing of this article.
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Candlin, Fiona (2010), Art, Museums, and Touch, Manchester: Manchester University Press.
Candlin, Fiona (2017), ‘Rehabilitating unauthorised touch or why museum visitors touch the exhibits’, The Senses and Society, 12:3, pp. 251–66.
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d’Evie, Fayen and Kleege, Georgina (2018), ‘The gravity, the levity: Let us speak of tactile encounters’, Disability Studies Quarterly, 38:3, https://dsqsds.org/index.php/dsq/article/view/6483/5090. Accessed 9 May 2024.
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García Vizcaíno, María José (2024a), ‘Sharing access in art museums: From tactile “images” to tactile “experiences”’, II Congreso Internacional Traducción y Sostenibilidad Cultural: Retos y Nuevos Escenarios , Salamanca, 17–19 April.
García Vizcaíno, María José (2024b), ‘Experiencias con tacto en el arte de la escultura: De la descripción auditiva a la descripción háptica’, I Congreso Internacional sobre ‘Accesibilidad Audiovisual e Inclusión en el Ámbito Universitario’, Verona, 13–14 June.
García Vizcaíno, María José (2024c), ‘Access for the blind in the art setting: Tactile paintings as touching experiences?’, Museum Management and Curatorship, 1:15, https://doi.org/10.1080/09647775.2024.2408243.
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Kleege, Georgina (2022a), ‘What’s it to you? Subjectivity and audio description’, lecture delivered at Montclair State University, Montclair, NJ, 24 February.
Kleege, Georgina (2022b), ‘Touch tours for all!’, Tate Etc., 8 September, https:// www.tate.org.uk/tate-etc/issue-56-autumn-2022/touch-tours-for-all . Accessed 9 May 2024.
Kleege, Georgina (2023), ‘Nydia, the Blind Flower Girl of Pompeii’, Perspectives, 10 July, https://www.metmuseum.org/perspectives/nydia-blind-flowergirl-pompeii. Accessed 9 May 2024.
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Mingus, Mia (2011), ‘Access intimacy: The missing link’, Leaving Evidence, 5 May, https://leavingevidence.wordpress.com/2011/05/05/access-intimacythe-missing-link/. Accessed 9 May 2024.
Mingus, Mia (2017), ‘Access intimacy, interdependence and disability justice’, Leaving Evidence, 12 April, https://leavingevidence.wordpress. com/2017/04/12/access-intimacy-interdependence-and-disability-justice/. Accessed 9 May 2024.
Neves, Joselia (2016), ‘Enriched descriptive guides a case for collaborative meaning-making in museums’, Cultus, 9:2, pp. 137–53.
Perttunen, Marketta (2003), ‘The tactile perception of art: A research project of the Art Education Department, JyVäskylä University, Finland’, in E. Salzhauer Axel and N. Sobol Levent (eds), Art Beyond Sight: A Resource Guide to Art, Creativity, and Visual Impairment, New York: AFB Press, pp. 209–13.
Reviers, Nina and Hanoulle, Sabien (2023), ‘Aesthetics and participation in accessible art experiences: Reflections on an action research project of an audio guide’, Journal of Audiovisual Translation, 6:2, pp. 99–121, https://doi. org/10.47476/jat.v6i2.2023.277.
Romero Fresco, Pablo (2024), ‘Access intimacy in media accessibility: The audio description of Where Memory Ends’, Journal of Audiovisual Translation, 7:2, http://dx.doi.org/10.47476/jat.v7i2.2024.299
Romero Fresco, Pablo and Dangerfield, Kate (2022), ‘Accessibility as a conversation’, Journal of Audiovisual Translation, 5:2, pp. 15–34.
Sheets, Hilarie (2023), ‘Her guide dog inspired her art. Now the Lab stars in a museum show’, New York Times, 5 December, https://www.nytimes. com/2023/12/05/arts/design/emilie-gossiaux-blind-queens-museum.html. Accessed 9 May 2024.
García Vizcaíno, María José (2024), ‘Love at first touch: A collaborative approach to tactile art explorations’, Journal of Arts & Communities, Special Issue: ‘Transdisciplinarity in Disability, Art, and Design’, 15:2, pp. 133–46, https://doi.org/10.1386/jaac_00058_1
Dr María José García Vizcaíno is currently an associate professor, director of the graduate programme in Spanish translation and interpretation and chair of the Department of Spanish and Latino Studies at Montclair State University, where she teaches courses in translation theory and practice and audio description. Her main line of research revolves around audio description, touch, art and blindness. In particular, she is currently working on a project about tactile resources in art museums and the role of touch as an accessibility tool for sculpture. She has published multiple articles in academic journals and has given numerous lectures at national and international conferences.
Contact: Department of Spanish and Latino Studies, Montclair State University, 1 Normal Avenue, Schmitt Hall, Room 222, Montclair, NJ 07042, USA.
E-mail: garciavizcam@montclair.edu
https://orcid.org/0000-0001-5045-3292
María José García Vizcaíno has asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work in the format that was submitted to Intellect Ltd.
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journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Article. English language. https://doi.org/10.1386/jaac_00060_1
Received 17 May 2024; Accepted 18 September 2024; Published Online February 2025
LISA SHAWGI
London college for Design and Fashion
ABSTRACT
This article reports on findings from a practice-based Ph.D. project where the study explored the lived experience of women living with a disability, specifically Raynaud’s phenomenon, to inform a fashionable knitwear collection called Re-dress, and contribute to current discourse on disability, clothes and fashion design. Raynaud’s is triggered by the cold or a drop in atmospheric temperature, high levels of anxiety or stress, causing the narrowing of the blood vessels. Such an ‘attack’ causes numbness, pain, fatigue, dexterity and mobility issues. Raynaud’s is usually managed by keeping warm using appropriate clothing; however, the research identified a range of ‘design issues’ within existing clothing products. Some fail to mitigate the effects of cold and poor circulation effectively and others have limited appeal in terms of aesthetics. The project adopted a human-centred design approach, where participants’ desires and needs guide the design process.
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KEYWORDS fashion textiles design design for health hidden disability participatory design human-centered design
Qualitative data were gathered via semi-structured interviews and a focus group to develop and create the Re-dress capsule collection. The collection was then assessed by participants and feedback interviews were carried out, which this article discusses. Receiving feedback on the collection was important to gauge the success of the design interpretations. The research highlights that balancing performance with aesthetics is key to promote health and well-being; aesthetics supports social engagement for a multidimensional experience, as aesthetics is fundamental to enhance wearer’s pleasurable and inclusive experiences on a personal and public dimension; trying items of clothing highlights key design features for disability which increases wearer–product interaction to enhance agency and ownership, and attention is in the detail when designing suitable clothes for disabled people that wear them. The Re-dress capsule collection explicitly outlines how to marry performance, aesthetics and sensorial modalities in a garment.
This article reports on findings produced from a practice-based Ph.D. project, where the study sought to understand the lived experience of women living with a disability, specifically Raynaud’s phenomenon, to inform the Re-dress capsule collection. The project aimed to re-dress women living with Raynaud’s phenomenon, to enhance their material experience, supporting well-being and agency. Raynaud’s phenomenon is a condition which affects the contraction of blood vessels, triggered by the cold, a drop in atmospheric conditions, stress or anxiety. It causes numbness and pain simultaneously and is not always isolated to the extremities. Keeping warm is essential to reduce the risk of an ‘attack’. However, people living with Raynaud’s phenomenon, and other disabilities, often face challenges in accessing fashionable clothing which balance function with aesthetics to fit their physical needs and fit in acceptably within society. As a fashion knitwear designer living with Raynaud’s phenomenon, my goal was to develop a range of knitted garments and accessories to support the practical requirements of staying warm to ‘self-manage’ the condition, whilst considering the aesthetic value of the garments to enhance the social and emotional experience of wearing the garments.
Throughout history, clothing shapes the body in healthy and unhealthy ways (McDowell 2013; Vincent 2009). As Rummel puts it ‘clothing in a way is the body’s body’ (Rummel 1990: 108) and ‘their[clothes] role in general is to assist’ (Harvey 2014: 21). Clothing can enhance the body’s performance via selective fibres (Laing and Sleivert 2002) and provide comfort and protection (Jussila et al. 2010). Therefore, we can comfortably assume for a function of clothing, which is its use in a utilitarian sense to manage the body’s welfare. Joanne B. Eicher defines the term ‘clothing’ as follows: ‘“Clothing” as a noun refers generally to articles of dress that cover the body. “Clothing” as a verb refers to the act of putting on garments’ (2010: 151). However, ‘clothing acts as a fashion item with aesthetic and transformative powers’ (Carroll 2015: 1). Our choice of clothing in how we dress is determined by a ‘socially or culturally approved way of doing something’ (Barnard 2014: 17) and fashion often determines what is aesthetically acceptable. Harvey suggests, when ‘we move from materials to made-up garments, we enter the dangerous domain of fashion’
(2014: 100), one closely linked to aesthetics and social expectations. With this non-utilitarian aspect of clothing, we move into the realm of embodying a conscious effort to fit in or be seen by society, or to subconsciously communicate principles and identities. I understand this as the fashionable dimension of clothing. Therefore, the term ‘clothes’ or ‘clothing’ refers to textile artefacts to support the body’s physical or biological well-being of the wearer. ‘Fashion’ as a concept supports the personal and social implications of clothes via aesthetics, which affects the emotional dimension of the wearer in terms of dress. Laitala and Klepp argue that ‘some bodies are more difficult to dress than others’ (2019: 124). At the start of ‘Dressing a demanding body to fit in’, Laitala and Klepp discuss strategies of people living with chronic skin diseases, highlighting that a lack of suitable attire prevents participants from joining in social activities, as they would appear inappropriately ‘dressed’. Living with these conditions proves challenging in everyday life, as participants live with the side effects of the disease and social implications. For people living with a chronic skin disease or a disability, clothing and their aesthetics plays a vital role in concealing their bodily ‘defects’ to ‘fit in’.
Mainstream fashion is competitive, driven by economic, commercial and popularity factors, often prioritizing aesthetics over wearer’s wants and needs (Risatti 2007). It is only since the 1950s that designers and scholars have attended to clothing needs of people with disabilities. According to Grace Jun (2014), textile fabrics can constrain or expand a wearer’s movement. As fashion is often associated with aesthetics, this overshadows the technical side of garments and its performance. As such, knitted textiles was the medium of choice to develop fashionable clothes for women living with Raynaud’s due to its flexibility and comfort. Alongside the opportunity to create a fabric aesthetic. An example of this is Radvan’s (2013) research which develops inclusive knitwear designs for women living with disabilities, inspired by the participant’s physical disability to complement their body shape, rather than to camouflage their body ‘abnormity’. Radvan’s (2013) project highlights that aesthetic and desirability are just as important as wearability and comfort. In other work, Gault (2017) created knitted wraps, ponchos and throws, to improve circularity issues for diabetics, whilst recognizing the importance of aesthetic aspect of the garments using colour. Similarly, Leccia and Conti (2022) designed a womenswear knitwear collection, where the importance of functional and fashionable clothes was recognized for wheelchair users. The collection used cotton and wool for physical comfort and pleasing aesthetics, inspired by the landscape of New York, that would be loved by the wearer.
The project adopted a human-centred design approach where the process focuses on customer’s and their context to create tailored design outcomes which resonate with their needs and desires (Giacomin 2014). The study engaged with participants at the ‘pre-design’ or ‘fuzzy’ end ( Sanders and Stappers 2008) of the design process to understand their lived experience, through semi-structured interviews and a focus group to inform seven knitted designs that make up the Re-dress capsule collection. Participatory validation of the designs was then gathered through wearer testing and feedback interviews, which this article reports on. According to Tracy (2010), participant feedback or member reflections add to the credibility or trustworthiness of research findings in qualitative data. Further to this, Slettebø emphasizes that
‘to engage in participation validation activities can be experienced by service users as respectful, inclusive and empowering processes which enhance their value’ (2021: 1236) and provides opportunities for participants to construct new meanings when reflecting on the results. In addition, this participatory approach correlates with the disability communities’ moto of ‘nothing for us without us’.
The Re-dress capsule collection consisted of seven pieces: a cardigan, a jumper, a pair of socks, a pair of leggings, a pair of gloves and two pairs of undervests (see Figures 1 and 2). The items were delivered to six participants
Figure 1: Top left image: knitted cardigan; top right image: knitted jumper; bottom image: knitted socks. See Appendix 1 for the fabric structure used on the inside of the cardigan, jumper, socks and pink undervest in Figure A1
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in the United Kingdom. The garments were placed on hangers, encased in garment bags to enhance the presentation aesthetic. To avoid loss or damage, the garment bags were delivered in person, and for this reason, six of the studies’ participants geographically close to me were selected. All but one participant was within two to three hours’ roundtrip car journey. With each garment, a questionnaire and tag were placed on its hanger. Alongside the garments was a clear box with instructions, participant information sheet, consent and image release form. For each item in the collection, a questionnaire was created to ask about the women’s initial reaction for each item of clothing, the visual impression, how it felt against their skin and after wearing it, the fit of the garment, how it would integrate with their wardrobe, anything that they would change, any lasting impressions and any other comments. This was followed up with an online interview where participants used the questionnaire as prompts with the garments. The role of the questionnaire was to capture participants’ initial thoughts whilst trying the garments and act as reminders during the interview. The garments were purposefully left with the women for the interview, to act as prompts and for interviewees to
gesture towards a design feature. Further to this, no information about the garments was included such as fibre content and size. This was to avoid influencing participant’s responses.
The data was analysed using thematic analysis, which entailed familiarizing myself with the data, whilst taking first impression notes; assigning codes that represent the content that are later grouped together by identifying patterns within the codes; generating themes from the grouped codes; followed by reviewing these themes to make sure they are coherent and are grounded within the data (Braun and Clarke 2012). To ensure my interpretations were grounded, the interviews were transcribed verbatim and quotes from participants were used to validate themes created and discussed. Further to this, to protect anonymity of participants, pseudo names were allocated.
As discussed above, the interview data was analysed using thematic analysis and four themes were developed (see Table 1).
Table 1: Themes developed from participant feedback on the Re-dress capsule collection.
1. Knitted fabrics for health and well-being: performance vs. aesthetics
2. How aesthetics supports social engagement for a multidimensional experience
3. Try it on: trying items of clothing highlights key design features and increases wearer–product interaction to enhance agency and ownership
4. It is in the detail: designing suitable clothes for bodies that wear them
In 2011, O’Mahony affirms that, in the context of technical textiles or therapeutic garments for health and well-being, ‘the coming together of the technical and the aesthetics is key to producing materials that perform, also look good and are pleasant to handle’ (2011: 19). Furthermore, Schifferstein and Wastiels (2014) argue that designers can enhance a wearer’s experience of a scenario through the sensory modalities of a product. This is by carefully considering the intrinsic (raw materials) and extrinsic (shaping of these raw materials) to create a multisensory experience. When the women commented on the collection at the beginning of the interview, the aspects they focused on were their experience of trying things on, the thermal performance and sensorial comfort of wearing the garments. Valerie commented that she ‘was struck when I looked at the whole range of garments, how easy to put on and take off […] to make it easier to use as well as to make it comfortable once you’re in it’. Louise mentioned ‘interesting, nice fabrics […] it’s a good dense, warm, soft fabric, which I quite like’. Jessie referred to the collection as ‘some really lovely, items there […] but what was nice was they were all warm, stretchy and quite fitted’. Margaret mentioned that she ‘didn’t know what to expect, but it was quite a pleasure to go through it’. And Brenda described her trying on experience as ‘it went really, really great […] it was great fun actually […] a really good time’. The women focused on
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the ease of trying things on, how the fabrics felt against the skin, how warm the fabrics were and the fit of the garments.
The women enjoyed the overall experience of trying things on, which brought the tangible aspects of the garments to the forefront. Both Jessie and Louise were drawn to the gloves for their functional elements, as Louise explained: ‘I love the gloves, these ones with the tips, I, as soon as I saw them, I thought yeah! My gloves [laughs]’. The touchscreen element was the selling point for both women as they could operate their mobile phones without removing the gloves. For Louise, it means answering a call from a friend when walking the dog. The gloves offered her choice of social participation. As Twigg (2010) suggests, dress relates to agency, choice and expressivity. An example of performance of a garment overshadowing aesthetics is that Valerie was very much interested in the fabric of the pink vest top as it ‘got nice little flecks all over it […] it’s not just a matt colour […] it’s got an interest to it’. However, the garment was unsuccessful in its design as it lacked sleeves, which was essential as an undergarment for Valerie. It links back to the women prioritizing their health. That is not to say that aesthetics was not considered or did not play a part in shaping the women’s engagement with the designs, as we shall see in the next section. As the interviews continued, the women did go into detail regarding the visual aesthetics alongside the performance as they discussed their thoughts on each of the items after trying on the designs. In fact, quite often aesthetics influenced a strong emotional reaction and how it fits into their wardrobe and determines where they wear a garment and if they would wear it at all.
Aesthetics in terms of stylish garments play an important role in supporting interaction and participation in society. Understanding the qualities of the garments that support social engagement in terms of the value of aesthetics for comfortable interaction (both physical and emotional comfort) is fundamental to readdress disability, fashion and clothing. This leads us to understand the meanings associated with wearing the designs. An example is Jessie’s reaction to the cardigan as she commented that ‘I’ve people commenting why I’m I wearing a winter jumper in summer? And you know, it’s a bit embarrassing really, but I could wear that, and it still looks delicate and summery, yet warm’. This moves us into the realm of how aesthetics creates meaningful experiences and evokes positive emotions as highlighted by Hekkert and Karana when a situation is evaluated ‘as potentially beneficial or harmful to the person’s concerns’ (2014: 7). Jessie envisioned her experience of wearing the cardigan, which presented a positive emotional reaction by avoiding feeling embarrassed. Style was an aspect which the women referred to when describing their reactions to the cardigan.
Margaret used the terms ‘classic’ and ‘timeless’ to describe the cardigan. It suggests a long-term attachment to the cardigan. However, Brenda’s first reaction to the cardigan was ‘does it fit in a nursing home? I think the lighter pink made me think of nursing homes’. During my conversation with her, it came to light that her mother lived in a nursing home, which shed some light to how this association was created. Once the collar was hidden, she described that ‘it changed the whole look of the garment and the feel of it, and thought yes, I would be happy to wear that […] because I think the grey is great’.
It is an example of how subjective experiences are and context-sensitive, which links to Hekkert and Karana’s (2014) proposition that the wearer’s relationship with a product is shaped by personal and situational factors. Brenda’s overall reaction to the collection is that ‘it looks like a normal piece of clothing, like anybody would wear’. The comment suggests the importance aesthetics play in ‘normalizing’ clothing for extraordinary needs, as well as the value of colour and style, as discussed above.
Discussing the sock design, Jessie expressed that ‘I love these socks, they’re so pretty’. Margaret was attracted to the socks ‘for being a bit different design, especially the yellow’, and Louise mentioned that ‘if they were commercially available, I’d have them in a range of colours’. Additionally, Margaret explained that how the ‘colours were great, they didn’t confine you to old person wheelchair status […] they looked stylish […] they looked fun’. The women commented on the appearance of the socks, before moving on to analysing their performance. This is perhaps for reasons that the socks usually worn by the women have very little visual appeal as they are outdoor socks. Jessie expressed that ‘when I’m at work, I don’t want to wear thick socks […] so something like those would be perfect with my trousers […] cos they’re nice and thick and warm, and, and there’s no seam, so they’re lovely’. For Jessie, the combination of how the socks appear visually alongside the functional element presents a desirable garment which produces a more meaningful and positive experience. The socks provide an opportunity for Jessie of choice in what she wears. Margaret’s instant reaction to the gloves was that she ‘didn’t like the look at them at all’ although she was attracted to the feel of the material ‘even if it doesn’t look very nice, it’s wonderful for the heat and the softness’. While the physical sensorial touch was desirable, the gloves lacked ‘something to catch the eye […] to catch that attention to it’ and recommended using ‘some pink […] plain black is Okay, if you are just looking for warm’. The gloves missed that visual stimulation, which attract the right attention of not standing out from the ‘collective’.
The act of dressing and trying on garments is key to knowing the suitability of a garment and to answer the question ‘[i]s this me?’ (Woodward 2007: 11). Exploring how trying things on potentially alters the relationship between the wearer and garment, making it a fundamental part of the practice of dressing, which is often impossible for disabled people as there is a lack of access to suitable clothing on the high street. Regarding the gloves, Brenda’s ‘first reaction was that they weren’t particularly elegant’. After trying them on, Brenda’s opinion changed and the benefits were identified ‘when we looked at them and tried them on, we thought they’d be great, absolutely fabulous’. After wearing the gloves, Brenda formed an attachment and imagines herself wearing them for more casual daily activities. Trying on and wearing a garment plays a big role in triggering an attachment. Jessie’s comments on the leggings were that ‘when I looked at the leggings at first, I thought, oh my God, these are so frumpy, but when I got them on, they were lovely!’. Once she tried the leggings on, her thoughts were: ‘They were comfortable and warm, but they looked […] trendy I suppose then my other leggings, cos they have a little bit more going’. Trying things on
is important as it stimulates the senses and interaction between body and garment. It relates to how a garment is worn, opposed to how it is used. Similarly, here was Margaret’s initial reaction to the jumper design:
Was overwhelmed by its size, I mean it’s just I thought ‘WOW, what is this?’ but I though this is too big, especially the polo neck, personally […] I was surprised, listen to that, I was surprised how the big polo neck which I wasn’t sure about, felt good! Once on me, I could use it as a hat or scarf at the same time […] when I put it on, suddenly the practicality of it came to me, I would make it a bit bigger.
She saw the potential in the jumper design, after putting on the item. Once connected to the body, the relationship between body and material transforms from one of uncertainty to one of appreciation, creating meaningful experiences. For her, it meant extra coverage, flexibility and freedom of not having to carry around a scarf or hat for added warmth, enhancing agency. Similarly, Jessie’s first reaction to the jumper was ‘when I looked at it, I thought, ummmm, I’m not gonna like that, I think, but, when I put it on, it was really flattering, and it looked like a jumper you could go out in’. Once again, aesthetics comes into play when the women interact with the garment when it is on the body. The connection between a body when wearing a garment aligns with Pullin’s proposition that when one wants to wear a garment rather than the need, creates a sense of ownership when you want to wear a garment. Margaret ‘didn’t want to take it[cardigan] off’. Brenda mentioned that ‘the minute we saw the socks, we both said we want them’. Louise referred to the gloves as ‘my gloves’. Valerie made the effort to show her husband the cardigan: ‘I put it on, and my, my husband was working in the office, um, further along the corridor, I said, hey, look at this’. Regarding the turquoise cami, Jessie said that ‘it was an item that I haven’t got currently in my wardrobe that, I got a gap in my wardrobe for something like that’. Once again, Jessie was unsure of the garment at first glance, until she tried it on. After trying it, Jessie realized its value:
It was thick enough to wear with something lighter, you know sometimes when you wear a shirt, I wear like a camisole underneath, but a cami isn’t warm enough, so, I tend to not wear a shirt, whereas that, would have substituted the cami and made sure that I stayed warm and then I could have worn a shirt on the top.
In this instance, the material performance came to the forefront which presented the potential value and meaning of wearing the garment. It allowed freedom of choice to wear clothing that Jessie desired, supporting her agency regarding how she dresses and control over their appearance. The following section discusses these finer details in terms of aesthetical design decisions and how the garment behaves or moulds to the body.
From the Re-dress capsule collection, the cardigan was the most favoured design. This was potentially for its effective balance between the intrinsic and extrinsic qualities. This design approach highlights ‘the unique design
potential’ suggested by Dunne (2013: 6) when designing for people living with a disability, as designers are motivated to investigate more innovative designs. For example, Valerie describes the cardigan design as follows:
On the whole, I just liked it, I liked the colour attachment as well, that, that was sort of linked wasn’t it, almost made a feature of the joining, and it reduced the bulk that you tend to get from an attachment to a collar, um, so, so I liked that, and that the shaping of the sleeves felt almost like top stitching you inserted the turquoise panels into but the stitching around that can feature which I thought it was rather nice.
There is a sense of appreciation for the well-thought-out design. Similarly, with the socks, Valerie was ‘intrigued by the diamond shapes […] that was quite nice actually, yeah, the top hem’. Jessie commented that she ‘likes the different colour banding around the top […] which is really pretty’. Louise mentioned that ‘the zig-zag design at the top is really attractive’. Margaret referred to the ‘bit of decoration there, which is just nice this little, little thing, the hollows’. This attraction to the finer details of construction and decoration reminds me of an approach to fashion suggested by Edelkoort (2015), where there is a need to move away from a pret-á-porter concept towards a more bespoke design perspective. The women appreciated the overall construction of the sock. The women liked the shape of the foot, the flat seams and the warmth offered from the ‘plush’ fabric. Valerie commented that ‘it’s quite a novel way of doing it, that, that the whole construction’. Jessie mentioned that ‘they’re really, they’re warm, they’re pretty, great colours, um, you can tell they’re really well made, they’ve got no scratchy seams […] they’re not tight around the ankle […] they got loads of toe room’.
Louise also mentions the toe area being larger to avoid ‘any kind of compression […] the toe shaping is a great idea’. Margaret also refers to the comfortable fit around the ankle the socks which ‘just fitted me nicely, it was just right for me on my foot’. And apart from wanting the length longer, Margaret gave the socks ‘ten out of ten for those’. All of these features are bespoke to the shape of a body living with Raynaud’s. Similarly, all the women commented on the shape of the sleeve to cover the back of the hand in the cardigan. Regarding the jumper, the long sleeves with the thumb holes were a success. The cowl neckline feature received mixed reactions. Margaret requested more fabric for extra coverage, Louise and Brenda found it was not for them, as it is too fussy. However, referring to the longer sleeves, Valerie commented ‘that you can hide in that when you’re going out into the outside world, yes, yes, splendid’. Louise said, ‘you could snuggle down into them’. The design features offer a sense of shelter from the environment and security. These bespoke features were informed by the women’s testimonies, and stories relating to clothing and the body, specifically issues with existing clothing when worn. Furthermore, designing from a human-centredness means designing for real bodies as opposed to ‘socially constructed ideals’ (Klepp and Rysst 2020: 79).
In this article, I drew on Giacomin’s (2014) definition of human-centred design where the approach focuses on understanding the needs, desires and
experiences of the people involved within the research to inform the Re-dress capsule collection. Participant feedback on the Re-dress capsule collection highlighted that to design fashionable knitted clothing, the performance of the fabrics is key for physical and emotional comfort. While fabrics supporting a person’s health is a priority, there is implicit value when considering the role of aesthetics on the wearer in terms of initial impression, motivation for trying a garment and imagining pleasurable experiences when wearing a stylish therapeutic design. Additionally, the Re-dress capsule collection allowed me to gather valuable feedback on my design interpretations on data gathered via semi-structured interviews and a focus group. Receiving feedback on the collection was important to gauge the success of a human-centred design approach as the designs were based on wearer’s requirements. This supports the argument that fashion must facilitate multidimensional aspects to enhance a disabled wearer’s material experience on a physical, emotional, social and aesthetic level. This means balancing performance of the fabric, the sensorial aspects of touch and fit of the garment, alongside visual aesthetics to enhance well-being and agency.
Ethical approval was granted by Nottingham Trent University’s Joint InterCollege Ethics Committee in August 2017. As I was working with women, who were considered vulnerable, I needed to ensure their comfort and safety at every step of their involvement with the project. Informed consent was acquired before each interview and workshop. I made explicit the nature of the research investigation, the type of questions asked and what the data will be used for. That is, to inform garment designs or services, academic literature and my thesis. All participation was voluntary and anonymous. Data was stored in a protective and secure manner in compliance with data protection legislation. The interviews which were carried out at participants’ homes required a risk assessment to ensure my safety as a stranger entering an unknown space. To manage this risk, I spoke with each participant to ensure their genuine interest in the project and informed my family of my location for each interview. Garments were also tried on at participant’s home for their comfort and convenience.
The Ph.D. project was funded by the Midlands4Cities Doctoral Training Partnership. The author wishes to extend her utmost gratitude for all the support provided during the project.
‘Plush’ is a fabric with a nap or pile. Figure A1 shows the inside of the cardigan prototype, where the ‘plush’ technique is located. The technique creates loops of yarn on one side of the knitted fabric, ideal for enhancing insulation. Figure A2 illustrates the ‘mock plush’ knitting technique produced on the Stoll ADF machine, a tucking technique to allow the yarn to ‘float’ between each needle tuck, which the knit technician and I referred to as the ‘floating tuck’ knit technique, shown in Figure A2. For each knitted row, the carrier tucks the yarn every fifth needle, selecting the first needle to tuck, working
A1: Image showing the inside of the cardigan demonstrating the ‘plush’ knit technique (Shawgi 2023).
A2: Image showing the inside of the turquoise undervest demonstrating the ‘floating tuck’ knit technique (Shawgi 2023).
inwards on alternative needles, ensuring all needles hold a tuck stitch, before knitting an all-needle row. This process equates to six rows of knitting to produce one knitted course on the back bed, before moving to the front bed.
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Compared to the ‘plush’ technique, the ‘floating tuck’ technique shares characteristics in that it feels soft and allows for a cushion affect. Additionally, the build-up of floating yarns provides an extravagance of fabric to aid in keeping warm. Furthermore, the ‘floating tuck’ technique allows for tubular or circular knitting, eliminating side seams.
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Shawgi, Lisa (2024), ‘Re-dressing disability through fashionable knitwear designs that support well-being and agency for women living with Raynaud’s phenomenon’, Journal of Arts & Communities, Special Issue: ‘Transdisciplinarity in Disability, Art, and Design’, 15:2, pp. 147–60, https:// doi.org/10.1386/jaac_00060_1
Lisa Farouk Shawgi is a fashion knitwear designer, educator and researcher of Egyptian/Sudanese and Irish heritage. She holds an honours degree in fashion design, MA in fashion knitwear design and Ph.D. in fashion, disability, inclusivity and sustainability. Dr Shawgi has worked for universities such as Liverpool John Moore’s, Nottingham Trent University and De Montfort University before accepting a post as senior fashion design lecturer for London College for Design and Fashion.
Contact: London College for Design and Fashion, 98, To Ngoc Van Street, Quang An Ward, Tay Ho District, Hanoi, Vietnam.
E-mail: lisashawgi@gmail.com
Web address: https://www.lisafaroukshawgi.com
https://orcid.org/0000-0003-1368-3755
Lisa Shawgi has asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work in the format that was submitted to Intellect Ltd.
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journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Essay. English language. https://doi.org/10.1386/jaac_00065_3
Received 15 May 2024; Accepted 11 September 2024; Published Online February 2025
Nottingham Trent University
ABSTRACT
This essay is written as a discursive experimental expression of the autistic and artistic perspective of making ‘Biodivergent Sites & Sounds’ (BSS). This is an autoethnographic fictional investigation of place, of waterways and of autism as a cultural identity. BSS is an immersive and accessible online experience of the Grand Union Canal (London). BSS was led by transdisciplinary artist and researcher Elinor Rowlands in collaboration with neurodivergent artists and the Canal & River Trust. Most collaborating artists are autistic. This is important to the transdisciplinarity modes and realization of making, thinking and being in this project that this essay explores. A specific new glossary of language emerged through this project that is now being used by the collaborating artists towards leading their own funded arts projects. This new vocabulary articulates modes
KEYWORDS
autistic stimming language
creative technology
immersive art waterways autoethnographic fiction climate pollution
of practice-based processes realized through making BSS that has the potential to contribute to wider contexts and articulation of creative practices.
This essay is experimentally discursive, aiming to contextualize artistic methodology from an autistic perspective rooted in my practice-based and autoethnographic research. It begins by defining the autistic space, where diverse and divergent cognitive experiences are recognized and valued, particularly in dialogical practice. In this context, stimming – repetitive behaviours and specialized interests – is a crucial aspect of the psyche for neurodivergent individuals. It supports self-regulation and meaning-making during sensory overload (Charlton et al. 2021; Kapp et al. 2019). However, stimming is often viewed negatively, leading to exclusion and pressure on autistic individuals, especially children, to conform to neuronormative standards. Despite recent research highlighting its benefits, outdated perspectives still see it as a behaviour to be diminished (Boyd et al. 2011; Pierce and Courchesne 2001; Nadig et al. 2010). Tancredi and Abrahamson (2024) argue for recognizing stimming as integral to learning, suggesting that valuing it could transform educational outcomes. This calls for the need to establish an autistic or neurodivergent space. While all collaborating artists are neurodivergent, not all are autistic however they all identify that they use stimming in their art practice.
This essay introduces my project, ‘Biodivergent Sites & Sounds’ (BSS), an autistic-led multimedia experience centred around the Grand Union Canal in London. BSS promotes collective knowledge-building and embraces an ecology of disability arts, creative technology and collaboration. By incorporating stimming, we enhance interactions and deepen our connections, cultivating solidarity among participants as we tackle complex issues like climate change and environmental protection. I will explore how intuitive practices and stimming cultivate a neurodivergent space, emphasizing ‘intuition as knowledge’ (Mozeley and McPhillips 2019).
The neurodivergent space is dynamic, where divergent perspectives redefine lived experiences as powerful artistic methodologies, challenging the mainstream narrative that often portrays them as failures or barriers to success. The goal of BSS is to reveal this neurodivergent space, portraying nature as a ‘being’ and encouraging audiences to engage with the innate qualities of stimming. This sensory experience also highlights themes related to the climate crisis. Audience members are invited to utilize technology for stimming, or rather, stim with the technology, while collaborators adopt new terminologies for their artistic processes. Freud’s (1919) concept of doubles resonates with autistic experiences, evoking an uncanny sensation similar to what many neurodivergent individuals feel – often like outsiders within their own bodies. Living in my body feels akin to residing in a haunted house, where I access memories and interactions through stimming as if no time has passed. I process information with a delay, needing to unpack the entire scenario, situation and space before I can fully understand it and move on. This often means it can take me years to process certain experiences and only then may I find the words to articulate them, by which time those involved may have moved
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on, leaving me behind. Many neurodivergent individuals experience timeblindness, but stimming allows me to transform feelings of exclusion related to processing delays, or ‘slowness’ into a meaningful artistic practice.
BSS generates new knowledges from the neurodivergent space, where artists engage with nature, ritual, transformation and identity. They use surreal and symbolic imagery, blurring reality and dream worlds and incorporate their sensory, often secretive, experiences of neurodivergence. In this accessible environment, neurodivergent artists use stimming to explore the human psyche and societal barriers to find transformative solutions through artistic practice. In the neurodivergent space, stimming is a source of power and transformation.
Through collaboration guided by my direction and lead, BSS artists attune to the energy of stimming. BSS provided opportunities to explore the impact of stimming, leading to innovative solutions and processes. Creative technologist Charles Matthews used this innate relationship between stimming and the body’s sensory experience with nature, enhancing it through technology and electronic music. In turn, participants can deconstruct and reconstruct their environment, creating a heightened sensitivity to the embodied experience of stimming, producing an otherworldly realm.
In BSS, stimming becomes a portal of invention, supporting artists to experience a sense of being, spatially, within their art practices. Within a neurodivergent space, the canal is explored as corporeal and acts as a site where memory can be interrogated. Carroll’s (1996) interpretation of the body as an impasse applies here, making the canal a site of crisis of identity and memory. In BSS, the canal’s body incorporates conflicting forms: a conformist space and a repressed ‘other’, illustrating the paradox of urban identity. It also holds repressed memories, but recovering them is complicated by the body’s role in the climate crisis. The body here is the audience, who form as part of becoming the canal but also belong to the human world who play a part in escalating the climate crisis. The corporeal canal as body through stimming becomes a double (Freud 1919). It is this relationship that the stim reacts and relates to producing, evoking and creating new ways of ‘becoming’ and being that can appear quite juxtaposing.
Stimming evokes intense emotional and sensory impulses that drive artistic practice. Freud’s (1919) theory of the uncanny, linked to animism and magical thinking, resonates with autistic experiences and is amplified in BSS. This uncanny effect aims to raise awareness of the climate crisis and promote a new engagement with nature.
Transdisciplinary approaches help us venture into these new spaces. Embracing art and practice-based research is essential for autistic research to transcend traditional medical and scientific frameworks. In a vibrant neurodivergent space, stimming emerges not just as self-regulation but as an exhilarating artistic methodology, where rhythmic patterns and movements become a conduit for intuition and profound meaning-making. In autistic artistic expression, stimming serves as a powerful form of creative language, manifesting in verbal, kinetic, social and textual forms. It intersects with transdisciplinarity and neurodivergence, cultivating creativity through diverse/divergent perspectives. Neurodivergent artists infuse their unique experiences into their work, resulting in distinct styles – like the raw, sensory-rich quality of my sound art derived from stimming. These expressions challenge audiences to embrace different viewpoints, enriching dialogue, empathy and understanding, while promoting collaborative creativity.
BSS was developed to help me connect and create within my local community. I face challenges due to delayed processing, difficulty sequencing tasks, communication barriers and fluctuating energy that affects my pacing. I wanted to engage locals despite group struggles, and help marginalized communities connect with nature through digital technology and music. Collaborating artists and community groups contributed to a soundscape towards the ‘Walking Trail of the Canal’ which I created for BSS, while Matthews and I developed six interactive elements that map the Grand Union Canal.
The project materials were generated in the form of poetry, ‘stim-scape songs’ (coined by collaborator, Dee Fry) that I redefined as ‘stim-scape scores’, fieldwork, site-specific sound gatherings, transcription, hand-drawn and digitalized maps, photographs, the digitalizing of photographs of the canal at various points, and paintings. These materials provided a foundation for me to share with neurodivergent musicians to respond to, as sensations of the site and responsive improvisation. Their commissions were weaved into the soundscape.
Musicians, Fry and Jo-anne Cox joined me for two live recordings in person, as I re-explored the canal through verbal stimming, journeying and storytelling, resulting in ten tracks. Stimming provided an intuitive and collaborative artistic methodology, creating a controlled and supportive environment that fostered deep listening, both to each other and the space, setting it apart from traditional improvisation. It guided our creative process. Below is a transcription of my encounter with the canal alongside Fry and Cox. The text I sang live in response to Cox’s cello and Fry’s stim-singing and guitar was part of the performance, which also included percussion instruments and steel tongue drums.
I find myself walking
Walking I find myself walking
I find myself walking
Down to the water
And up the bank there are these coots and they are protecting their eggs
And on the banks of the water’s edge
There are these coots protecting their eggs
And their nests are made of plastic bags (×4)
I used the Grand Union Canal and its waterways to collect photographs, videos, audio recordings, samples and performance traces from my socio and auto-ethnographic research. I collaged these through stimming as visual and aural methods and Matthews used my reflexive writing and project materials to digitally render the canal into six elements: Bridge, Water’s Edge, Crossing, Ripples, Rusty Can and School.
These elements invite visitors to use their fingers on a phone or tablet to create site-responsive improvisations, directly interacting with and responding to the canal. We invite them to create their own stim-scapes, and in directly interacting with the technology they respond to the specific environment encountered.
Stimming as an arts methodology transcends repeated actions, moving practice into new spaces and emphasizing the doubles in Freudian theory (1919) while merging beings. Matthews translated my intersensorial and spatial sounds for the audience to encounter. He believes ‘music [is about] creating spaces’ through resonances, texture and scale. He crafted a sound and environmental experience that allows for stimming through the sensation of memory. The sensation I describe involves recalling a memory to enjoy and stim with it. This is the experience I intended for audiences.
Both Matthews and I use a stim technique I describe as ‘overlayer’, where materials are layered and edited in a rhythmic energetic flow. This body of work is porous, hiding and revealing like the ebb and flow of streams. Matthews ‘overlayered’ the project materials into the creative technology, while I ‘overlayered’ the site-specific and multiple layers of sounds to create the soundscape trail/stim-scape score. Nothing can work without the other. Overlayering can be defined as a stim with images and materials from various sources.
In ‘Ripples’, my painting becomes the algae on the surface of the canal’s skin of the water, the soft pastel scribbles in the painting mirror the reflections of trees on the skin of the canal water. Similarly, the reflections of trees on the layer of ripples upon the surface of the canal water reflect back as squiggles mirrored in the painting. There is rhythm in the process.
The transdisciplinarity of stories, interactions and activations of a site create the performance. Text does not lay dormant but is re-performed. My practice is led through conversations, discussions and collaboration – artmaking with others. I have chosen to show the creative process through interviews, evaluating this intersensorial spatial practice.
Repetition of rhyming and return are central themes in my art practice and stimming experiences, which were once discouraged in education but later became my research focus. Through overlayering site-specific sounds, watery vocabulary and texts, and the ongoing process of ‘reaching out for the water’s edge’, I explore autistic and neurodivergent sensing and bodily connections to environments. In working with disadvantaged inner-city London community groups, stimming served as a guiding tool for children to boost their creativity, experiment and take risks and build self-trust. Stimming came naturally to them especially when it was used as an artistic methodology. In the arts, stimming emerges as a methodology, reflecting the expressive and multimodal nature of autistic communication.
Fry describes stimming in artistic practice through the concept of ‘delay’, which resonates deeply with her. She utilizes guitar and delay pedals to embody the music and creates entire pieces through stim-singing, as exemplified in the soundscape ‘Song of the Canal’ at 00:34:42. She refers to her tracks as ‘stim-scapes’, explaining her process of weaving and layering, cutting and blending them with recordings of ducks, geese and piano to create a cohesive flow. It was only through dialogical practice that we discovered the way we make music is the same. By using sound objects like my gathered site-specific sounds, I collage and layer them together with my compositions and contributions from collaborating musicians and community groups to create soundscapes and music trails.
Corporeal (adj. bodily, physical) material anatomical carnal corporal fleshly fleshy human mortal
Through BSS, I connect the canal to my lived experience of autism, aligning with Serres’s philosophy that values intuition as a ‘pre-rational’ yet meaningful sense (Watkin 2020: 27). To explore the canal and the impacts of pollution, I use intuition as knowledge, and both I and the other artists express this through stimming, which Serres describes as ‘essentially corporeal’ ( Watkin 2020: 28). Thus, stimming becomes an embodiment of intuition and autistic ways of knowing, rooted in sensory experience. BSS centres the autistic lived experience in understanding the corporeal canal and embodying what it feels like to be polluted, inviting audiences and collaborators into an intersensorial spatial practice.
Matthews assisted me in revealing aspects of my internalized autistic processes that tend to remain static without the aid of creative technology. Unveiling these many layers was integral to the process, as were our conversations together. He says:
Immediately, each of the elements really took on a life of their own. The interaction between the different parts was not just a case of: ‘here are the areas of the screen you will tap, and these are the sounds which will be played’, which I would say is probably the more conventional expectation, common expectation, typical expectation, and not much more. There were more abstract ideas we wanted to dive into, or express and explore, or areas that we could dig into. […] Just talking about the experience of the acoustics of walking under the bridge […] we’d very naturally move through that into what I would describe as musical ideas.
In the musicality of Matthews’s speech, his neurodivergent style of stimming is notable and so enjoyable to listen to, he has a remarkable way of describing artistic processes that I found sensorially satisfying which I identify as a stim. Internally, I stimmed with Matthews’s words and this helped me to develop my ideas and convey to him the heightened sensorial situations I wanted audiences to encounter at different points along the map.
Similarly, in a conversation with Steven Hitchins, who worked on the layout for the BSS book, he expressed how he experiences the textural qualities of words in his body as a stim. He uses this stim as a guiding tool for selecting which words to choose and how to position them next to one another in his poetry. This approach aligns closely with my own process when collaging and editing my video audio work. Within BSS, the artists and community groups could expressively utilize the stim as a tool in their language and art-making
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processes, they could collaborate with a sense of agency, autonomy and without hierarchy.
Matthews recognizes that outsiders looking in at the situation would not recognize it as a musical conversation. He is used to working on instruments designed to be played, either to recreate a piece of music or to fit a specific style. His goal is generally to create an experience that overlaps with playing a musical instrument. He explains: ‘It’s not to recreate something […] but to bring about a different sense of interacting with the world and reality, […] like when you were talking about “dissociative-becoming” […] needing to get into that space to perform’.
Dissociative-becoming is a type of stim that I identified through my research, wherein artists need to dissociate in order to separate themselves from their surroundings and engage with them collaboratively, while maintaining their autonomy. BSS provided us with the chance to develop interactive experiences in new environments, neurodivergent spaces, that exist beyond geographic landscapes.
In a similar vein, Hitchins acknowledges that his work only comes to life through reader interaction. While discussing his writing process as part of my research on stimming, I asked him about the idea of texts being their own distinct entities. He responded: ‘these text entities could just exist like landscapes, but also they’re not just their own entities, I think they need readers to interact with them really to be properly activated’. BSS also required active audience interaction, with Matthews noting the effectiveness of our quick engagement in encouraging participation. Noting that I (Elinor) could ‘reach out and touch […] manifestations of our ideas’ through the interactive creative technology, allows for a unique experience revealing my autistic perspective as other-worldly and magical as opposed to problematic and something I have been shamed into hiding even within artistic contexts. This adaptability led Matthews to treat the stim as a flexible entity, creating an interactive map that allowed encounters with different elements to be adjustable. He established parameters such as echo length, space tightness and brightness, all tied to a dynamic ‘back and forth’ movement. He suggests that we could have used a pre-recorded ‘under-a-bridge-like’ sound on one side and an ‘open’ sound on the other, simply moving between them without directly affecting any of the effects, like the echoes, and that for many people they would be fine with that. ‘They might not be able to distinguish between the more complex sounds’. However, when audiences spend more focused time stimming with the technology then as Matthews identifies, ‘you can find little nooks and crannies on the page where it sounds quite different’.
These nooks and crannies are what make the interaction of the finger –and the stim – as an artistic methodology crucial for effective engagement and unearthed an invitation to enjoy a sensation, the way autistic/neurodivergent folk enjoy stimming. The canal’s body is porous, transforming through touch and metaphor into an accessible experience that engages the landscape and invites a sensuous interaction with the complexities of memory.
According to Matthews, so much music taps into our environment, nurturing our perceptions and ways of listening. He has noticed that in certain places, he instinctively makes sounds as he passes through. In his previous home, there was a staircase with an echo that perfectly matched the snare on a dub record he owned, ‘I couldn’t help but just move through and “play” that sound by snapping my fingers every time’. This is comparable to the way I encounter memory with the ‘haunted house’ in my body.
Thus, the neurodivergent experience in this project powerfully highlights how our unique sensory perceptions allow us to immerse audiences quickly, as we instinctively respond to our acoustic environments and create interactions through sound.
BSS muses upon the landscape of the Grand Union Canal as an active archive for memory of unmarked and marked ground. Cox, a cellist, and I often talk about how we journey as a stim to create portals to other and new worlds. We take ourselves to new spaces to accentuate a sensorially emotive experience for our audiences through sound.
Replaying and layering through stimming can be enjoyable, but Cox notes it may lead to over-saturation, often sounding better with just one or two layers. Matthews emphasizes that getting caught up in excessive layers of code highlights the importance of collaboration to refine the interactive experience and avoid getting lost in the stim.
Collaboration helps us to remember that the audience has a role to play in the interaction of the work, that they need to activate it and for that to happen we must ensure the space is accessible for them to encounter the work. Often, my solo work is drenched in murkier and darker depths. The work is noisier, more unsettling and stretches in screechier, flatter notes and tones. However, BSS transformed my practice by emphasizing transdisciplinarity. By merging my project materials, Matthews made these layers accessible through creative technology. The neurodivergent experience involves many layers, making collaboration essential for revealing depth over time and thus making it more accessible for audiences to encounter and activate.
Cox experiments with her cello, using stimming intuitively to create textures and merge sounds. She states, ‘creating textures, merging, and improvising with modal scales continuously is a repeated way of creating for me. […] This echoes back to when we worked on Phrike, where I merged with the cello to embody the Goddess Phrike’. This merging of bodies/beings can only happen in a neurodivergent space because the unique perspectives of neurodivergent individuals create an environment that allows for deep connections and creativity. In these spaces, traditional norms are relaxed, enabling fluid exchanges and the blending of identities that is not possible or allowed in conventional settings. BSS invites all audiences to engage with the climate crisis through new transdisciplinary forms.
BSS transforms and preserves experiences that may otherwise be fleeting or inaccessible. ‘Bridge’ was an element where I could capture and extend the sensations and memories associated with walking under a bridge. ‘Bridge’ allows for a temporal manipulation, where the audience can engage with and prolong the experience indefinitely, transcending the constraints of time. A bridge is both a physically precarious and an emotionally resonant space that adds depth to this artistic investigation. By inviting the audience to interact with ‘Bridge’ in the context of BSS, we offer them a chance to engage with their own memories and sensations but also prompt them to reconsider their perceptions of familiar environments.
BSS evokes and extends moments of significance, inviting audiences to immerse themselves in the sensory and emotional landscapes Matthews and I created together. BSS invites contemplation and playfulness whilst
exploring the intersections of memory, perception and time. The project allows audiences to be part of the art-making process and enjoy the sensations of process for themselves, to be trapped in the flow of sensing, making and stimming.
When audiences tested the stimming experiences in a communal space ahead of the launch of the technology, a sustained artistic process of dialogue and interpretation from my autistic lived experience augmented a specific form of cultural knowledge. This achieved a systematic vision and perspective of the canal as a form of embodied memory and knowledge.
My art highlights the overlooked displacement of the autistic experience. Neurotypical norms often make autistic individuals feel wrong for their differences, pressuring them to change their speech and identity, which can lead to feelings of worthlessness and contribute to high suicide rates – averaging 36 years (Kurchak 2018) – and double the mortality risk compared to the general population, especially among autistic females (Forsyth et al. 2023). Capitalist ideology further marginalizes them. In neurodivergent spaces, however, autistic experiences can be ritualistic and nomadic, offering freedom and a sense of being more tree-like and natural in their divergence.
The digital map enhances cultural knowledge by offering a sensory perspective on the city’s waterways. The audience collectively become participants and music-makers, creating their own sound experiences rooted in autistic language, culture and identity. They connect with the wildness important to autistic (and neurodivergent) artists, empathizing with the trees and feeling a kinship along the canal.
Notice.
To notice.
To feel the calling, and be rooted in the soil. Growing like a seed.
Unearthing, and unmasking.
Swirling out from underneath like a ripple on the surface of the water.
Floating.
Growing.
Breathing like a tree.
This dissociative-becoming experience occurs more in the making process. Matthews identifies that creating something like this requires so much effort that ‘you ideally lose yourself in it’. He found the work refreshing. In other contexts, diverging from musical aspects would be distracting, but here, the main focus was ‘this type of abstraction that I feel like we’re both trying to describe’.
BSS invites audiences into the autistic lived experience of ‘becoming’ on a heightened sensory scale. Autistic language and sensations are traced in and
around the water, reflecting an ever-layered self. The immersive experience is like a kaleidoscope, where audiences see only parts of the landscape, similar to a passenger in a fast-moving car.
Hitchins notes, ‘I like kaleidoscopes as a metaphor. They remind me of fractals. I like collages and mosaics’. He identifies that whenever he cuts out a piece, it seems better than as part of the whole. Placing it next to other pieces creates an energy.
This energy defines BSS. Autistic perspectives, highly detailed and up close, bring the climate crisis into sharp, imminent and sensory focus, hoping to inspire action. Here, participants exchange places with the canal, ‘becoming’ its essence.
In conclusion, embodied practices facilitate tacit knowledge sharing, cultivating a fertile shift into the neurodivergent space by inviting audiences to experience the canal’s becomingness. BSS nurtures an environment where divergent knowledge systems and perspectives merge supportively. In this space, individuals exercise agency and deep listening to attune to stimming, forming a knowledge community. Collaborators enhanced BSS’s aims through stimming, creating polyphonic voices and allowing autistic-led artistic research to flourish.
This article was researched and written to the standards of Intellect’s Ethical Guidelines: https://www.intellectbooks.com/ethical-guidelines. No approvals or subject consent were required.
The project ‘Biodivergent Sites & Sounds’ was made possible through funding from Arts Council England (NLPG-00597712).
Boyd, Brian A., McDonough, Stephen G. and Bodfish, James W. (2011), ‘Evidence-based behavioral interventions for repetitive behaviors in autism’, Journal of Autism and Developmental Disorders, 42:6, pp. 1236–48, https://doi.org/10.1007/s10803-011-1284-z Carroll, Rachel (1996), ‘The return to the body in the work of Sylvia Plath, Angela Carter, Leonora Carrington, and Flannery O’Connor’, Ph.D. thesis, Newcastle upon Tyne: University of Newcastle upon Tyne, https:// www.researchgate.net/publication/35771625_The_return_to_the_body_ in_the_work_of_Sylvia_Plath_Angela_Carter_Leonora_Carrington_and_ Flannery_O’Connor. Accessed 31 January 2024.
Charlton, Rebecca A., Entecott, Timothy, Belova, Evelina and Nwaordu, Gabrielle (2021), ‘“It feels like holding back something you need to say”: Autistic and non-autistic adults accounts of sensory experiences and stimming’, Research in Autism Spectrums , 89, https://doi.org/10.1016/j. rasd.2021.101864
Forsyth, Laurence, McSorley, Marc and Rydzewska, Ewelina (2023), ‘All-cause and cause-specific mortality in people with autism spectrum disorder: A
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systematic review’, Research in Autism Spectrum Disorders, 105, https://doi. org/10.1016/j.rasd.2023.102165
Freud, Sigmund ([1919] 1955), ‘The “Uncanny”’, in J. Strachey (ed.), The Complete Psychological Works, Vol. XVII, London: Hogarth Press, pp. 217–56.
Kapp, Steven K., Steward, Robyn, Crane, Laura, Elliott, Daisy, Chris, Elphick, Elizabeth, Pellicano and Ginny, Russell (2019), ‘“People should be allowed to do what they like”: Autistic adults’ views and experiences of stimming’, Autism, 23:7, pp. 1782–92, https://doi.org/10.1177/13623 61319829628
Kurchak, Sarah (2018), ‘I’m autistic. I just turned 36: The average age when people like me die’, Vox, 19 February, https://www.vox.com/ first-person/2018/2/19/17017976/autism-average-age-death-36-stress Accessed 31 January 2024.
Mozeley, Fee and McPhillips, Kathleen (2019), ‘Knowing otherwise: Restorying intuitive knowing as feminist resistance’, Women’s Studies, 48:8, pp. 844–61, https://doi.org/10.1080/00497878.2019.1676746.
Nadig, Aparna, Lee, Iris, Sing, Leher, Bosshart, Kyle and Ozonoff, Sally (2010), ‘How does the topic of conversation affect verbal exchange and eye gaze? A comparison between typical development and high-functioning autism’, Neuropsychologia, 48:9, pp. 2730–39, https://doi.org/10.1016/j. neuropsychologia.2010.05.020
Pierce, Karen and Courchesne, Eric (2001), ‘Evidence for a cerebellar role in reduced exploration and stereotyped behavior in autism’, Biological Psychiatry, 49:8, pp. 655–64, https://doi.org/10.1016/s0006-3223(00)01008-8.
Tancredi, Sofia and Abrahamson, Dor (2024), ‘Stimming as thinking: A critical reevaluation of self-stimulatory behavior as an epistemic resource for inclusive education’, Educational Psychology Review, Special Issue: ‘Human Movement and Learning’, 36:3, https://doi.org/10.1007/ s10648-024-09904-y
Watkin, Christopher (2020), Michel Serres: Figures of Thought, Edinburgh: Edinburgh University Press.
Rowlands, Elinor (2024), ‘Writing the experience of the Grand Union Canal in Harlesden as an intersensorial spatial practice’, Journal of Arts & Communities, Special Issue: ‘Transdisciplinarity in Disability, Art and Design’, 15:2, pp. 161–72, https://doi.org/10.1386/jaac_00065_3
Elinor Rowlands is an award-winning multi-disciplinary artist. Elinor uses repetitive/rhythmic gestures (stimming), layering sound and sculpting it around repeated images from nature. Elinor’s practice is phantasmagorical, moved by feelings of ‘otherness’ offered through the prism of ritual and magic. Elinor uses dreamy world-building in her artwork to disseminate timely truths about invisible challenges, from an unflinchingly neurodivergent and LGBTQIA+ affirmingly feminine/non-binary gaze. Elinor is a fine art practice-based Ph.D. candidate within the Artistic Research Centre (ARC) at Nottingham Trent University (NTU). Her academic research explores how stimming is an artistic methodology using an autoethnographic fictional approach.
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Wed, 05 Feb 2025 14:23:00
Contact: School of Art and Design, Nottingham Trent University, Dryden Street, Nottingham, NG1 4EY, UK.
E-mail: elinor.rowlands2022@my.ntu.ac.uk
https://orcid.org/0009-0007-2589-5305
Elinor Rowlands has asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work in the format that was submitted to Intellect Ltd.
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journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Article. English language. https://doi.org/10.1386/jaac_00069_1
Received 17 May 2024; Accepted 21 October 2024; Published Online February 2025
ELIZA CHANDLER
Toronto Metropolitan University
MEGAN A. JOHNSON
Dalhousie University
ABSTRACT
In this article we engage a transdisciplinary perspective to analyse cultural accessibility practices, which are access practices developed by disabled people for the cultural field. Cultural accessibility seeks to disrupt normative culture by creating flexible practices that centre disabled people and disability community. Drawing on research with Tangled Art + Disability, a disability art gallery in Toronto, Canada, we explore the iterative and collaborative processes through which the organization has developed cultural accessibility practices. We narrate the provenance of these practices through ‘Stories of Access’ that illustrate how the context of the gallery – including artists, staff, audiences, resources, technologies, materials, spaces, policies and access commitments – influenced their development. Throughout, we demonstrate how thinking about practices of cultural accessibility as themselves transdisciplinary allows us to track more nuanced origin stories as embedded in institutional history, crip wisdom and practices and organizational specificity and resist the ways that access is taken up as a non-relational practice.
KEYWORDS
cultural accessibility transdisciplinary disability art Tangled Art + Disability crip wisdom remote access cultural sector
In Canada, there is currently a commitment to making arts and culture accessible through a combination of dedicated funding streams, a focus on Deaf and disability arts programming and a robust roster of accessibility providers, such as sign interpreters and audio describers. These efforts and resources, and the shifts in cultural practices they instigate, are promising for their potential to facilitate a more accessible arts and cultural sector across the country. Though many organizations are focused on the logistics of accessibility – such as ramps, elevators and automatic door openers – which are mandated through accessibility legislation, an increasing number of cultural organizations are engaging more innovative and creative approaches to access through adapting practices of ‘cultural accessibility’. Cultural accessibility refers to access practices developed by disabled people for the cultural field that use a combination of universal design standards for built environments and crip cultural practices – flexible practices that disabled communities create, adopt and adapt to meet the access needs of diverse publics (Cachia 2013; Chandler et al. 2023; Johnson et al. 2024). Some fields use the term to broadly describe the ways people access artistic experiences and cultural heritage (Benente and Minucciani 2019; Campitiello et al. 2023; Kovačić et al. 2024). Within this literature, discussions of cultural accessibility often focus on making the arts accessible for disabled people (Tatic 2015; Pirrone et al. 2023). However, different from our use of the term, these works tend to describe making culture accessible as a benevolent project that non-disabled people undertake to make culture more available to disabled people without their leadership or even involvement. Our understanding of cultural accessibility is more so focused on how different philosophies, approaches and practices disrupt normative culture in ways that centre disabled people rather than seek inclusion within it, particularly when led by disabled people through an anti-assimilationist disability politic (Laaksonen 2010; Piepzna-Samarasinha cited in Kafai 2016; Hamraie 2017; Lazard 2019; Piepzna-Samarasinha 2022). As Elizabeth Ellcessor describes, this approach ‘moves beyond narrow technocentric notions of accessibility […] considering how contexts affect accessibility and also reimagining what access means, could be, and to whom it may be relevant’ (2016: 187).
In this article we analyse cultural accessibility practices for how they emerge through a combination of critical access theory (Hamraie 2017), a transdisciplinary field of study that identifies systemic barriers experienced by disabled people and offers innovative, transformative solutions, along with the expertise of disabled artists and cultural practitioners and the individual and collective crip wisdom of disabled, mad, D/deaf and neurodivergent people accessing the arts as creators and audience members. To demonstrate the impact of these transdisciplinary practices, we draw on our research with Tangled Art + Disability, a disability art gallery in Toronto/Tkaronto, Canada. Tangled and its team of disabled experts are leaders in disability-led cultural accessibility practices in Canada and widely recognized for developing new standards of artistic excellence which are radically transforming how we create and experience art.
This article theorizes cultural accessibility as a transdisciplinary practice by thinking with Tangled’s community-oriented and community-led access practices, particularly practices that emerged in situ during COVID-19 pandemic lockdowns. We capture the iterative, co-creation and collaborative processes through which the organization has developed cultural accessibility practices, which range from innovative to banal (Tangled Art + Disability n.d.; Papalia 2018, 2022). We narrate the provenance of Tangled’s cultural accessibility
practices through ‘Stories of Access’ that illustrate how the context of the gallery, including artists, staff, audiences, resources, technologies, materials, spaces, policies and access commitments, influenced their development. Throughout, we demonstrate how thinking about practices of cultural accessibility as themselves transdisciplinary allows us to track more nuanced origin stories as embedded in institutional history, crip wisdom and practices and organizational specificity and resist the ways that access is taken up as a non-relational practice.
The wider cultural embrace of cultural accessibility may seem encouraging. Upon closer examination, however, it is often revealed that the original antiassimilationist intent behind these practices is lost in application. Consider the cultural accessibility practice of relaxed performances. Relaxed performances, a concept and practice, were developed in the 1990s by a group of neurodivergent theatre practitioners in the United Kingdom (Touretteshero 2016). As written by disability artist Jess Thom, aka Touretteshero, ‘[r]elaxed performances take a laid-back approach to noises or movement coming from the audience [and] give everyone permission to relax and respond naturally’ (2016). They ‘offer a warm welcome to people who find it difficult to follow the usual conventions of theatre behaviour’ (Touretteshero 2016). Due to the activism of disability artists and disability studies researchers (see LaMarre et al. 2020), relaxed performances have gained increased popularity and have been taken up by theatres across Canada in recent years. Though it might seem that this is improving cultural accessibility for disabled and neurodivergent people, examining the execution of these practices tells a different story. Many theatres only offer one relaxed performance in the run of a show, which is typically a matinee that is marketed to ‘everyone’, children and disabled people alike. On the surface, nothing seems wrong with this sentiment, as we have grown accustomed to access being sold to us as worthwhile because it makes things ‘better for everyone’ (Hamraie 2017: 7) (to reference the popular universal design maxim). In practice, however, this means that a disabled person who requires a relaxed space to access the performance is not given the same range of options as a non-disabled person and, potentially, cannot attend their preferred version. Disabled and neurodivergent people are not imagined as intended users of relaxed performances even though this cultural accessibility practice was designed for them. This is indicative of how, as critical access scholar Aimi Hamraie warns, just as disabled people are often excluded from the popular imagination of what it is to be human (Goodley et al. 2014), we also tend to be left out of the conception of ‘everyone’ that access is meant to benefit (Hamraie 2017: 7). This example highlights the main points of our argument: the importance of understanding the provenance of the cultural accessibility practices and the nuances of their application, thus strengthening these practices within the context of specific organizations and imagining disabled people as the intended users of cultural accessibility practices. By revealing Tangled’s processes for developing these practices – processes that often remain hidden within conversations intent on highlighting innovation and indiscriminate approaches to ‘inclusion’ – we aim to influence other cultural organizations to develop similar disability-led and communityengaged ways of creating transformative accessibility.
We are drawn to transdisciplinarity as a way of orienting to cultural accessibility because of its refusal to adhere to disciplinary boundaries or singular
epistemologies. Much like disability studies, a field that draws on a unique range of disciplines, transdisciplinary research has evolved over the past several decades with an intention to advance a synthesis of epistemological, ontological and methodological approaches that, together, create a novel approach to inquiry and the production of knowledge. As Basarab Nicolescu, the primary signatory of the 1994 Charter of Transdisciplinarity, describes, ‘[t]ransdisciplinarity concerns that which is at once between the disciplines, across the different disciplines, and beyond all disciplines’ (2014: 19). Critically, however, beyond being merely a synthesis of differing approaches, transdisciplinarity is about querying the origins of knowledge – it encourages us to ask the question: How do we come to know what we know? Article 2 of the Charter, for example, notes:
The recognition of the existence of different levels of reality governed by different types of logic is inherent in the transdisciplinary attitude. Any attempt to reduce reality to a single level governed by a single form of logic does not lie within the scope of Transdisciplinarity. (Nicolescu et al. 1994: n.pag.)
This is not unlike disability studies’ approach to disability and impairment, which refuses preconceived ideas of what disability is or can be. Instead, disability studies ‘attunes us to problems in ways that compel creative rather than pre-determined responses’ (Jaarsma 2020: 16). By opening to the myriad possibilities of how disability emerges and is lived, disability studies scholarship often engages transdisciplinarity.
The denunciation of singular forms of logic (or single disciplinary perspectives) has been positioned as an inherently ethical dimension of transdisciplinarity. As Jay H. Bernstein describes, one of the early articulations of transdisciplinarity is found in the doctoral dissertation of Jack Lee Mahan, Jr, who, in 1970, ‘criticiz[ed] both the compartmentalization of the traditional disciplines and ideals of detachment and aloofness associated with disciplinary inquiry’ (2015: 3). For Mahan, transdisciplinary work was to be in service of ‘exposing disciplinary boundaries to facilitate understanding of implicit assumptions, processes of inquiry, and resulting knowledge’ (Mahan cited in Bernstein 2015: 3). From this perspective, transdisciplinary approaches are a method for interrogating (and potentially transcending) the myopic limits of disciplinarity – the latter which can prevent researchers from recognizing the biases and implicit assumptions through which they approach their work.
We find resonance between this perspective on transdisciplinarity and critical access studies. As Hamraie describes, part of the work of critical access studies is to interrogate ‘access-knowledge’ – the ‘historical project of knowing and making access’ (2017: 5) wherein access comes to be known and understood in particular, but always limited or incomplete, ways. As Ada S. Jaarsma observes, critical disability studies retains ‘a dynamism to the method’ of creating access, which ‘gives rise to the creation of locutions that express complex, non-linear ways of thinking and knowing’ (2020: 17). Recall our earlier description of the way that the access proffered by relaxed performances is positioned as ‘good for everyone’. It exemplifies an access discourse that, on the surface, is benign, yet which risks eliding the specific access needs of disabled people and the long histories of disability activism that fought for such transformations (Hamraie 2017). While we believe that everyone deserves accessible spaces in which they can thrive, we also agree that understanding
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relaxed performance practices only from the perspective of broadening access to be ‘good for everyone’ can obfuscate the specific access needs of disabled people. A transdisciplinary perspective would refuse a singular reading of these practices, instead understanding them as both rooted in long histories of politicized disability activism and practices that could hold benefits for a variety of users.
Tangled Art + Disability, located in Toronto/Tkaronto, Ontario, is Canada’s foremost disability arts organization whose mission it is to connect ‘professional and emerging artists, the arts community, and a diverse public through creative passion and artistic excellence’ (Tangled Art + Disability n.d.). Led entirely by disabled people, Tangled and its associated art gallery, Tangled Art Gallery, is dedicated to supporting, creating and facilitating opportunities for and showcasing work by disabled, D/deaf, chronically ill, neurodiverse, k/crip, Mad, sick and spoonie artists and advancing cultural accessibility (Tangled Art + Disability n.d.). Tangled is governed through a disability justice framework, centring the leadership, communities and artistic practices of disabled people of colour (Berne 2015; Tangled Art + Disability n.d.).
Tangled is a recognized leader in cultural accessibility within the Canadian arts and culture landscape, particularly for how their approach to cultural accessibility is informed by critical access (Hamraie 2017), disability justice (Mingus 2011; Berne 2015) and decolonial (Dion Fletcher 2019; Ineese-Nash 2020; Dion Fletcher and Ferguson 2021) frameworks. Tangled’s commitment to these frameworks links to another tenet of transdisciplinarity, specifically its focus on lived experience. Transdisciplinary research is often positioned as operating between two schools of thought: one associated with Nicolescu, which brings in ethical, metaphysical and even mystical perspectives, and another being the ‘Zurich school’ that focuses on tangible solutions to real world – now often termed ‘wicked’ – problems (Bernstein 2015: 7–8). Cyrille Rigolot, however, argues that it is ‘now time to move beyond’ only considering these two classifications in/of transdisciplinary approaches and to instead consider transdisciplinarity, almost paradoxically, as a discipline in itself, but one that is in productive tension with transdisciplinarity as a way of being. As he explains,
As a discipline, [transdisciplinarity] corresponds to specific skills, methods, and theories for knowledge integration and implementation within the scope of problem-solving research projects. When [transdisciplinarity] is instead considered as a way of being, by contrast, it extends far beyond the scope of research projects and can manifest ubiquitously in the researcher’s life.
(2022: 13)
For Rigolot, practising transdisciplinarity means applying the concepts at a personal level in a way that foregrounds the researcher’s subjectivity. This makes transdisciplinarity relevant for anyone, not only for professional academic researchers. Rigolot cites the French philosopher Edgar Morin, whose ‘transdisciplinary work […] [is] deeply integrated with his own life experiences, including events such as the death of his mother and his participation in French resistance’ (2020: 3). These experiences led Morin to understand
1. Throughout this article, we use the term ‘crip’, a reclaimed term, that affirms the disruptions created by the ways that disabled people move through space as affirmative, productive and transformative (McRuer 2006; Chandler 2013). We do so with the acknowledgement that the term does not hold the same resonance with everyone in our community or who identifies as, or moves through the world with, disability (Chen et al. 2023). As Alison Kafer writes, ‘the word has edges, and edges bind’ (2023: 415). As Kafer (2023: 416) grapples with the word crip – what it is after and what it binds – she wonders if crip may bring people together through relationality rather than identity. Taking from Kafer and others, as well as our own identification and relationality with this term, our use of crip throughout this piece mobilizes multiple and overlapping possibilities for how ‘crip’ undoes conventional understandings of disability. Rather than knowing with certainty what comes after this undoing, we hold open space for meaningmaking to emerge.
that ‘every form of knowledge is a construction resulting from specific sources and choices that themselves depend on historical contingencies and personal preferences’ (2020: 3). Following Morin’s approach, our own subjectivity brings us to this work and also shapes how we present the findings in this article; we recognize how a focus on lived experience can illuminate significant and unique situated understandings of the world. We, Eliza and Megan, the authors of this article, both have unique relationships with Tangled. Eliza, who identifies as crip1 and relates to disabled others and the world through crip politics, was Tangled’s artistic director from 2014 to 2016. During this time, Tangled opened its gallery and began to establish its cultural accessibility practices. In the eight years since she left, she has attended to Tangled’s development, including their access practices, through a scopic perspective through her programme of research. She is interested in observing how access practices – though they may be described as ‘innovative’ and ‘novel’ from another perspective – evolve from an organizational palimpsest of access needs, crip wisdom and curatorial contexts. The research presented in this article comes out of this working relationship. Megan, a non-disabled ally to the disability/ crip community, was a volunteer with Tangled from 2016 to 2020, and also researched the gallery’s access practices as part of her doctoral work in performance studies. Focusing on the infrastructural politics of disability art, Megan positioned Tangled’s access practices as an ‘administrative infrastructure’ (Johnson 2022: 202–12) that advanced disability politics through critical interventions in how artists and audiences could access and experience the gallery. She remains interested in how Tangled’s work foregrounds practices that are typically ‘behind the scenes’ in order to advance disability justice. Together, we understand Tangled’s approach to cultural accessibility through the specific ways that we have engaged and interacted with the space, staff and community of the gallery. Our framing of Tangled’s access practices – and, more critically, the politics that such practices advance – is strongly shaped by these perspectives. They are also impacted by the wisdom and political perspectives of Tangled’s community, which understands disability as a part of an intersectional social identity and, relatedly, acknowledges that – depending on their social location – some disabled people are positioned as deserving of accessibility while others are not (Mingus 2011; Hamraie 2017; Williamson 2019) under White supremacist hegemony. In this way, Tangled uses accessibility as a vehicle for disrupting the normative order, enacting anti-assimilationist politics in practice. Sean Lee, Tangled’s director of programming, underlines this by noting that it is critical that accessibility – the reshaping of structures and practices in order to facilitate disabled people’s participation and ability to live a fulfilled life – moves our culture towards a ‘crip horizon’ (Chandler et al. 2022).
Due to its national and international recognition as a leader in the advancement of cultural accessibility, Tangled is routinely approached by cultural organizations across the country looking to strengthen their commitment to accessibility by developing and enhancing their cultural accessibility practices, as well as disseminating news of and soliciting feedback on these newly developed practices through community engagement. While some of these organizations are looking to hire Tangled and their associated ‘access activators’ – disabled people trained in cultural accessibility – to develop their own unique accessibility plans and relationships with disability, Deaf, mad and
neurodivergent communities, others are simply looking to adopt Tangled’s accessibility practices as their own. It is possible that Tangled’s own access plan and practices could serve as a model or a template to help organizations begin to establish their own process for creating cultural accessibility practices that transform their infrastructure, programming, policies and practices and engage and impact the communities they serve. Nonetheless, we argue that the actual ‘doing’ of accessibility must be accomplished by each individual organization, a process which often includes developing relationships with a community with whom they can – if budget allows – consult with as they create or co-create access practices.
Through the ‘Stories of Access’ research project, Eliza sifted through the ephemera in Tangled’s digital archives, which includes access guides from different exhibitions, scripts used for in-person and virtual gallery tours that feature robust descriptions of the gallery and exhibits’ access features and exhibition documentation, to capture the iterative and collaborative process through which Tangled has developed various cultural accessibility practices. We felt that this research could support understandings of the provenance and even the ordinariness of these access practices and position them as emergent practices developed in response to an expressed need, working with ‘crip wisdom’, and likely through a process of trial and error, rather than practices that could simply be applied to another cultural context without consideration of attenuation. As we analysed these findings, we began to recognize how these practices intersect with the tenets of transdisciplinarity, emerging from lived experience in order to unseat, and potentially reconfigure, knowledge of the world.
In the fall of 2021, disability/non-visual artist Carmen Papalia curated Undeliverable, a group exhibition across Tangled and the Robert McLaughlin Gallery in Oshawa, Ontario. Named by Papalia and one of the exhibiting artists, jes sachse, Undeliverable referenced how remote access, the cultural accessibility practice of providing access to an event through digital platforms, had been adopted throughout the pandemic as an effective way to maintain ‘business as usual’ without attending to the needs and desires of disabled people by, for example, honouring crip time and prioritizing access and care (Johnson et al. 2024; Undeliverable 2021). Undeliverable honours that many disabled people are unable to, or resist the demand to, carry on as usual throughout this public health crisis.
Aislinn Thomas, one of the artists in Undeliverable, created an ‘invisible sculpture co-created by the efforts and care of everyone who spends time at the gallery’ for her contribution (2021). This work responded to her access need for a fragrance-free space. In her artist statement, which hung as a didactic panel in the gallery, Thomas noted that
[l]ike most access work, creating fragrance-free or low-toxicity access is an ongoing and iterative process. Unlike some access work, attention and effort is required of everyone who is present – not just an accessibility coordinator or a department within an institution.
(2021)
Thomas’s piece, titled Ongoing, collective effort and learning in appreciation and humble recognition of bodily complexity, permeability and vulnerability, as well
Figure 1: Aislinn Thomas, Ongoing, collective effort, 2021. Artwork.
Photograph credit: Michelle Peak courtesy of ‘Bodies in Translation: Activist Art, Technology, and Access to Life’. Courtesy of Tangled Art + Disability.
as the interdependent nature of our survival, our thrival, as featured in Figure 1, offered an invitation to enact the interdependency required to sustain ‘toxicant-free access’ as well as tools to support ‘fragrance freedom’ (2021). Inviting ‘everyone who visits, works in, and volunteers at the gallery to help co-create a fragrance-free space’, Thomas asks in her artist statement, ‘What personal values do you draw on to help make the labour of creating access meaningful and sustainable?’ (2021). She also created a script for staff and volunteers to read out to visitors as they entered the space which described how and why they were trying to maintain the gallery as a fragrance-free space, outlined how visitors could participate in this access commitment and addressed some of the access frictions that could arise (e.g. when the fragrance of someone’s topical cream triggers a response in someone else). This script also offered guidance for how to act in uncomfortable situations, for example, asking someone to leave the space if they are not complying with the fragrance-free policy.
In this multimodal artwork, attendees were both provided with and asked to embody knowledge about scent-free spaces as an access practice. As transdisciplinarity invites us to do, we might consider how the specific ‘disciplinary perspectives’ of each person as they entered the gallery – the knowledges, assumptions, experiences and histories of their own lives – would contribute to how they understood and responded to the work. For some, Thomas’s work might reflect or affirm their own experience and understanding. For others, the piece could have presented new possibilities for how to move through the world – potentially even in a confronting way. As Thomas (2021) says, fragrance-freedom requires a challenging, even uncomfortable policy to live out overtime and it often includes a sustained commitment. It requires everyone who is present in a space to do access work, including those who are unprepared or resistant to doing so. The access texts Thomas provided and
the fragrance-free policy they helped to enact are innovative and useful. But they must only be used as guides as other organizations develop their own approach.
At the beginning of 2022, Tangled partnered with the Doris McCarthy Gallery at the University of Toronto, Scarborough to mount #CripRitual. This group exhibition was curated by Cassandra Hartblay, Aimi Hamraie and Jarah Moesch of the Critical Design Lab and featured the works of 25 Deaf, disabled, mad and neurodivergent artists, groups of artists and artist collectives. According to the curators, crip rituals – including ceremonies, habits and community practices – are held by disabled people and are practised within and provide structure to and support for disability culture (#CripRitual 2022). Since the beginning of the pandemic, Tangled has extended their access practices by developing remote access (Acton and Hamraie 2022) to keep their Deaf, disabled, mad and neurodivergent community safe while also keeping us connected. As disability studies scholars and activists Kelsie Acton and Aimi Hamraie (2022) point out, though many disabled and neurodivergent people have been requesting tech-based options for remote participation since well before the pandemic, the remote access that emerged during lockdown was often governed by powers and structures that understood it as a stopgap measure focused on keeping things (namely capitalism) moving rather than as a sustainable accessibility practice. As Acton and Hamraie say,
The term accessibility usually describes efforts to make the public sphere (such as streets and buildings) more inclusive for disabled people, but within disability culture, in particular, remote access is a significant (though largely undocumented) dimension of social and vocational life. (2022: n.pag.)
The remote access practices at Tangled were developed and are sustained within community, following a tradition of disabled people using tech-based remote access practices, such as chat groups and Google sheets, to build community and organize in ways consistent with their access needs (Acton and Hamraie 2022: n.pag.).
Many of these remote access practices were in place during #CripRitual: Tangled held virtual group meetings with artists facilitating an opportunity for them to come together as a creative community while maintaining distance. They also hosted virtual accessibility workshops with artists to introduce the gallery’s access practices and invite artists to collectively brainstorm means of making their work accessible, drawing on the crip wisdom of the group. In the exhibition literature, Lee framed these access practices as crip rituals, writing that, ‘access hacks and other crip workarounds become ritualized through repetition’ (2022).
One group that participated in #CripRitual was the ‘With’ Collective, composed of artists Cassidy Bankson, Faye Harnest, Earl LeBlanc and Dawn McLeod who all live with acquired brain injury (ABI). During pandemic lockdowns, these artists started exchanging photographs of their drawings with each other before weekly phone calls ( #CripRitual 2022). This ritual was a vital point of connection for these artists whose need to avoid visual stimuli,
2. ‘Exquisite corpse’ is a method of collaborative drawing or writing whereby multiple artists work on the same creation without knowing what others have contributed. For example, multiple people would draw different parts of a person without having the reference of what the other has drawn.
including computer screens, left them feeling isolated from their peers and their practices at a time when so much was happening online. The development of this analogue remote access practice highlights how, as DeafBlind scholar John Lee Clarke observes, remote access is often directed towards ‘senses that can be felt at a distance, without direct and tactile touch’ (Clarke cited in Acton and Hamraie 2022: n.pag.). As the artists wrote in their artist statement, ‘[w]e connected because we were artists that felt estranged from our original art forms and were looking for new ways to create’ (Bankson cited in #CripRitual 2022). It was important to the ‘With’ artists that they create low-stimulus forms of engagement to meet their access needs, as well as the needs of others living with ABIs. This required the ‘With’ artists and Tangled to work through the ‘access friction’ that emerged between a collective desire to maintain social distancing through online programming and the artists’ access need to avoid screens (Hamraie 2017; Hamraie and Fritsch 2019). Striking a balance between these conflicting access needs and commitments, the ‘With’ Collective decided to hold an arts-based workshop on Zoom that participants could access through the platform’s audio function if they needed to avoid screens. The artists delivered this workshop working with the ‘exquisite corpse’ method,2 inviting artists into their crip ritual, an offline collaborative artmaking/access practice (#CripRitual 2022). They encouraged participants to experience artmaking as a ritual that ‘points to the creativity and speculative innovation that disabled people employ to find strategies for survival and the cultivation of social personhood in spite of disabilities that prevent participation in normative social interactions in the dominant culture’ (#CripRitual 2022).
Both of Tangled’s Undeliverable and #CripRitual exhibitions embodied a transdisciplinary approach through which the gallery, the curators and the artists came together to think across and between experiences and epistemologies in order to ensure more equitable, disability-led orientations to access. Tangled led with crip wisdom when building the access for these exhibitions and still ‘access frictions’ emerged (Hamraie 2017). For instance, in collaboration with the ‘With’ Collective through the #CripRitual exhibition, artists intervened in the assumption that digital forms of remote access mean increased access. Rather than simply prompt Tangled to change their access practices by eliminating remote access practices altogether, the intervention by the ‘With’ Collective caused the organization to think critically and engage in community consultation around how they practice remote access and what they offer as alternatives. Tangled will likely continue to update their remote access practice and address access frictions as they solicit and work with feedback from members of their community with ABI. For instance, they may have to attenuate this practice for Deaf people with ABI who would not be able to look at a screen to communicate with virtual American Sign Language interpreters. Access frictions also arose in the Undeliverable exhibition as Thomas’s invisible sculpture asked everyone in the gallery to co-create access. Maintaining a scent-free space meant that some people who visited the exhibition could not enter the gallery. When these frictions emerged, the gallery’s response was guided by their commitment to providing access for people with environmental disabilities over providing access to everyone. Critically, Thomas’s piece demonstrates how the universal design concept
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that ‘good access should provide access for everyone’ is insufficient when some people’s access precludes the access of others. Rather, the piece centres what Annette Harris Powell calls ‘access-as-practice’ (2007: 18), or the actual ways that access is implemented and reinforced by communities. A lively practice that is ‘not static but […] rich, complex, and not easily categorized’ (Powell 2007: 18), here cultural accessibility evokes transdisciplinarity through its emergent and dynamic nature. Importantly, it is also contextual. Other cultural organizations might learn about new cultural accessibility practices from Tangled’s stories of access and how they responded to access frictions. However, they would need to adapt this practice in specific relation to those involved to ensure that the practice they develop was the right fit for their context and community.
As researchers seek to address complex problems in contemporary life, they are increasingly turning to transdisciplinarity in an effort to catalyse change and guide future actions. This work recognizes the necessity of bringing together different perspectives and approaches, and also thinking across disciplinary silos. In so doing, transdisciplinary research – and, as we have argued, transdisciplinary perspectives that extend into everyday life – encourage reflection on our positionality, biases, intentions and situatedness. The exhibitions and artworks that we have highlighted here reflect this approach by inviting us to consider the origins of our access knowledge, extending preconceived notions of how access is offered and maintained. They advance cultural accessibility by demonstrating how when we think about access in situ it is revealed that access practices cannot be implemented uniformly across different cultural contexts. We hope that drawing attention to Tangled’s processes for innovating and implementing access practices in which close relationships with disability communities and networks are foundational will encourage other cultural institutions interested in developing access practices to adopt similar practices. Cultural organizations can do this by developing their organization’s access knowledge, implementing robust access policies that guide interactions with and treatment of staff, artists, curators, installers and audiences, budgeting for access, creating processes for responding to access frictions, and forming reciprocal and sustained relationships with disability communities through which they continue to develop and refine their cultural accessibility practices in ways that respond to their organizational contexts and the activities of their communities. Committing to access in these ways highlights the possibilities, multiplicities and tensions of access, ultimately offering a way to think with its frictions towards accessible futures.
This article was researched and written to the standards of Intellect’s Ethical Guidelines: https://www.intellectbooks.com/ethical-guidelines. No approvals or subject consent were required.
The authors received no specific grant from any public, commercial or not-forprofit agency to aid in the research or writing of this article.
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Eliza Chandler is the executive director of the Office of Social Innovation and an associate professor in the School of Disability Studies at Toronto
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Metropolitan University, where she teaches and researches in the areas of disability arts, critical access studies and social movements. She leads a research programme focused on disability arts and crip cultural practices. She is also a practising curator.
Contact: School of Disability Studies, Toronto Metropolitan University, Sally Horsfall Eaton Centre for Studies in Community Health, 99 Gerrard Street East, Toronto, ON M5B 1G7, Canada. E-mail: eliza.chandler@torontomu.ca
https://orcid.org/0000-0002-7641-3499
Megan A. Johnson is the research facilitator in the Faculty of Arts and Social Sciences at Dalhousie University. She holds a Ph.D. in theatre and performance studies from York University, where her dissertation examined the infrastructural politics of contemporary disability performance. She has published and presented internationally on disability culture, accessibility, cultural infrastructure and the environmental humanities.
Contact: Faculty of Arts and Social Sciences, Dalhousie University, Marion McCain Arts and Social Sciences Building, 6135 University Avenue, Halifax, NS B3H4R2, Canada.
E-mail: megan.johnson@dal.ca
https://orcid.org/0000-0003-2525-8289
Eliza Chandler and Megan A. Johnson have asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the authors of this work in the format that was submitted to Intellect Ltd.
journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Article. English language. https://doi.org/10.1386/jaac_00061_1
Received 17 May 2024; Accepted 19 September 2024; Published Online February 2025
ROB MACAISA COLGATE
University of alberta augustana
ABSTRACT
The term disability poetics is often used to describe poetry that is simply about disability. Drawing from the concepts of against-access and cripping the arts, the present article explores the current limitations of disability poetics and suggests the implementation of visual arts accessibility practices as one path towards expanding the notion of what disability poetics can encapsulate. The article then introduces an excerpt from the author’s book Hardly Creatures (Tin House, 2025), a collection of poems that uses the metaphorical form of an accessible art gallery to make its own attempt at translating the aforementioned visual arts accessibility practices across disciplines into poetic practice.
INTRODUCTION
The field of disability poetics is one of slippery definition. Often, this slipperiness leads to uncertainty rather than possibility, to imprecision rather than expansiveness. When we discuss disability poetics, almost always what we end up discussing are poems about disability. These are poems of great value and necessity. Poems about disability, whether or not they are explicitly
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KEYWORDS
disability accessibility access intimacy embodiment art galleries poetry collections poetic forms
termed so (think of Anne Sexton’s ward poems, Audre Lorde’s cancer journals), may often be readers’ first encounter with the social model of disability in action – that is, that disabilities can be understood as social variations that deserve accommodation rather than medical pathologies that require cure. Yet even as these poems speak disabled stories with radical voices and narratives, they do so in forms that disabled artists have been told we must use. We must write in traditional forms if we want to be heard, if we want to convince the able-bodied reader that we are happy to be alive.
In a talk given by disability activist Imani Barbarin at Toronto Metropolitan University’s School of Disability Studies, she challenges the premise of access: ‘When we demand access, what is it we are demanding access to? Do we even want in?’ While they are essential, a focus on poems about disability may ultimately end up limiting the greater notion of disability poetics from breaking free of the existing literary landscape and its institutionalized ableism. The most prominent existing anthology of disability poetry, Beauty is a Verb, no longer serves us: it is dated, limited to physical disability, exceedingly White and overwhelmingly in conventional verse (Bartlett et al. 2011). At the current moment, there is an opportunity and urgency to move past mere aboutness and radicalize on a craft level, to foreground the use of disability as a guiding principle in poetic practice, as a way towards the truth of what it means to be a poem.
In his article ‘Against access’, poet and scholar John Lee Clark describes a similar transformative impulse in the growing Protactile movement:
In my community, we are in the midst of a revolution. […] We insist on doing everything our way, fumbling around, groping along, touching everything and everyone. We are messing with traditional spaces, rearranging them to suit us better, rather than the other way around.
(2021: n.pag.)
Clark’s characterization of disabled language practice as an act of foregoing tradition in favour of methods unique to disabled living falls in line with the visual arts concept of ‘cripping the arts’. As detailed by Eliza Chandler in her 2019 introduction to the Canadian Journal of Disability Studies’ Special Issue on the topic, to ‘crip’ the arts is
to centralize disability, Deaf, and madness in cultural production, representation, and experiences not only when this centring allows normative culture to proceed as it always has (perhaps the centring of disability would never allow for such a thing) but also, and especially when this centring disrupts normative culture.
(Chandler 2019)
In the practice of cripping the arts, disability becomes a source of revelatory knowledge not only in the products, but in the means of the art.
Tangled Art + Disability is a not-for-profit art + disability organization based on the traditional land of the Haudenosaunee, the Anishinaabe, the Wendat and the Mississaugas of the Credit, commonly known as Tkaronto or Toronto, Ontario in Canada. With a mandate to support disabled artists, cultivate disability arts and enhance overall access to arts for disabled and ablebodied audience alike, Tangled occupies an important position in the cultural landscape with an inextricability between disability, access and art at the heart
of its organizational and curatorial practice. At Tangled, art takes an accessfirst approach. The question is not ‘how do we make this art accessible?’ but rather ‘how might access lead us towards new and radical art?’
From 2022 until 2024, I had the great fortune of serving as Tangled’s inaugural poet-in-residence. This position offered me the chance to lead poetry workshops, hold office hours and curate readings and panels, all centred on engaging the local disability community. During my tenure, what most arrested me was visual art’s capacity to engage access on both a content and experiential level. In one exhibition, avere cura, everyday objects implicated in disabled living such as blister packs of pills or rolls of gauze were cast in plaster moulds, allowing the sculptures to be physically handled by audiences who may privilege tactile experience over visual. During a screening by the Frictions of Futurity Project, a film about the disability implications of transplant medicine was both closed-captioned and interpreted into American Sign Language (ASL). In these instances, the art was simultaneously about disability in its content and accessible to disabled folks in its experience.
How, then, might we translate these practices from the visual arts to the literary arts? How might we crip poetry in order to move beyond disabled content and into disabled practice and experience? This article introduces an excerpt from Hardly Creatures (Colgate 2025), a collection of poems I wrote during my time in residence at Tangled that centres transdisciplinarity between the visual and literary arts in its composition. Over the course of 46 poems that explore disability community and access intimacy, the book’s transdisciplinarity lies in the way that the poems themselves create an accessible reading experience by utilizing visual arts access measures.
Drawing inspiration from Tangled as a physical space, the book leans on poetry’s intrinsic relationship with the figurative to take on the metaphorical form of an accessible art gallery; the full title of the collection is Hardly Creatures: A Gallery of Our Own. Within the gallery of the book, poems are organized into ‘wings’ that readers are invited to explore in any order and partiality, the same way as they might wander through rooms in a museum taking in only certain artworks depending on their spoons. Poems themselves go on to stand in for access features. Tangled’s digital accessibility toolkit lays out some of these (though it should be noted that any checklist is only a starting point for the active practice that is access): tactile replicas, ASL translation, care attendants, benches, relaxed visits and sensory areas, content warnings, accessible transit info and gender neutral bathrooms, to name a few (Zbitnew et al. 2021). Other poems stand in for the artworks themselves: portraits, sculptures, films, an artist talk.
Different methods are used to figuratively transform these poems into accessible artworks:
• All poems are marked with access symbols that relate to content of the poem, letting readers know where to expect triggering content or text drawn from closed captions of speech. Over the course of the collection, these symbols are altered and manipulated to create a visual poetry that seeks to be at once intelligible and implicit, creating an overarching sense of how a reader might access this particular poem.
• Each wing begins with a support worker who checks in with the reader about what lies ahead. This check in takes the form of a poem composed entirely of lines taken from the subsequent poems.
• An initial information section consists of a poem listing the relaxed ways that readers might navigate through the book as if it were a physical space: at whatever time of day, in whatever comfortable position, in whatever order of poems.
• The gender neutral bathroom is represented by the poem ‘Ode to Pissing’, while the accessible transit information is represented by the poem ‘Commute’. Both of these poems described lived experiences of disabled folks that might occur in one of these bathrooms or train cars.
• The sensory room is a page that readers are invited to flip back to at any point during their reading should they feel the need to step out and relax.
• A poem of access cues is included that invites readers to tear out paper threads of different textures, each representing a different capacity level and to be worn as a reminder to the self of their own amount of spoons.
• An artist talk is translated into ASL via written descriptions of the physical hand and face movements.
• Tactile replicas are created via erasure poetry, with the remaining language in erasure replica representative of the parts of that poem that are ok to be ‘touched’.
• There is a bench in every wing which consists of a poem centred on the often restful experience of access intimacy, defined by Mia Mingus as ‘that elusive, hard to describe feeling when someone else “gets” your access needs’ (2011: n.pag.).
These methods give folks across the disability spectrum more accessible ways to engage with poetry than most books of poetry tend to offer. The nonlinear format and sensory room invite neurodivergent readers chance to read at their own rhythm; the ASL descriptions allow Deaf folks to read poetry in their native language; when read aloud, the tactile replicas give visually disabled folks a moment of recognition unique to their experience that is usually absent in the flatness of the page.
Ultimately, the transdisciplinarity between visual and literary art at the heart of this collection is meant to gesture towards dreams of literary futures that are grounded in both practical and creative access, that invite in disabled and able-bodied readers alike who may not have realized they were being kept on outside of poetry by existing standards of practice. There is a chance for the reader to feel like their needs are being met as they read the poems –even needs they did not realize they had. In a cultural moment in which disability justice finally seems to be gaining mainstream traction, the intention is for this collection to signal that the literary world can innovate towards access and inclusion, and that this innovation does not need to compromise artistic integrity: it can in fact be a source of it.
Clark laments that ‘[a]ccess itself is too often all we have, a dead end, leading nowhere: captions without images, lyrics without music, raised lines without colour, labels without objects, descriptions without anchors’ (2021: n.pag.). These poems attempt to carve a path past that dead end.
HARDLY CREATURES : A GALLERY OF OUR OWN
Feel free to skip this and head right into the gallery (page 9) if that is what feels most accessible for you.
Guide Overview:
If you want help with page 6 whatever way you have arrived to page 7 need: stay. page 8
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This is the space. Here is how we learn to belong in it.
Relaxed Visits: For neurodivergent gallery-goers or those sensitive to sensory output or those overwhelmingly alive.
● Relaxed hours: Come as you are, tired, or restless, or scared of bright lights, come in the night when you are somehow most awake.
● Relaxed seating: The colors and shapes will look the same from your bed, from the floor, from the train or ocean or heaven.
● Relaxed tour:Wander through the rooms in any order. You do not have to visit them all o r look at every artwork.
There is no correct way to mov e through a house that you live in.
Access Features: Tactile replicas, alt text, transcriptions, guided tours, sensory rooms, etc. available without request or realization that you might ever request
Access Doula: A care attendant wil l be around, will check in with you about what lies ahead in each wing.
You do not need to listen to them They are only there if you want help listening to yourself.
Content Warnings: The attendant will raise their hand during s harper attempts at truth : You are allowed to reach for it if you would like.
Apologies: We are sorry that the fonts are not larger. We are sorry that the page has no texture or sound. We wish the benches were actually benches instead of poems
We understand if you hav e to leave and will treasure t he absence that remains.
Here are three strings.
Pick one to wrap around your finger while you are in the gallery as a reminder to yourself of yourself
Fuzzy string: fragile.
Braided string: recovering.
Thin string: strong.
Remember that you belong here. You must allow yourself to exist in what ever way you have arrived to the space.
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Feel free to flip back here whenever you need. Stay as long as you want.
The light stays as dim as you would like.
I promise the light stays.
Thumb and pinky extended while moving towards self then fingers on both hands folded towards chest then index finger pointed up and spun in circle
Thumb and pinky extended and hand moved down
Hands rotated at wrist towards center of body with third and fourth fingers folded towards body then index finger to the lips, then flat palm pressed on top of other fist
Index finger pointed up and away, then hands rotated at wrist towards center of body with third and fourth fingers folded towards body
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Realize the page 10 masterful page 11 poem page 12 was too sick to page 13 move forward. page 14
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God Is In The Gallery doing a performance piece.
He and a madwoman sit opposite one another in hardback chairs staring at each other from across the empty room
God says, I will show you how you needn’t suffer for my name
Immediately, something like scales fall from her temples and she perceives the room with great precision.
The audience erupts into applause until they realize the woman is shrieking.
Put them back.
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Dear Heather,
I sincerely regret the necessity of composing this email, the basis of which I understand presents inequitable consequences to the foremost commitment we maintain to our mission of collective care, interdisciplinary development, and critical ideatio n-action processes. Unfortunately, today I have encountered a number of individualized dilemmas related to my socio-medical temperament which have imposed severely on my capacity to conduct business affairs at an adequate level to contribute meaningfully to our present endeavors. It is my intention to administer an internal audit, follow up swiftly with the pertinent treatments required to restore my condition, and restore a more attuned and masterful presentation of my character for our next strategic planning session. Please accept my profound apologies; I look forward with genuine eagerness to returning to our collaboration together posthaste
Regards, Robert
M. Colgate
Hi Heather,
Sorry, this sucks, and I feel bad missing things bc our project rn is legitimately rly cool and important. Anyway I had an episode last night, don’t have to get into it, I’m fine and handling it, but I can’t get anything done today ugh. Gonna take a minute to rest, get some help, and should be fine for meeting tomorrow. Se riously so sorry, thanks for bearing with me, can’t wait to get back at it when I’m better
Thanks, Rob
Heathereatherer
sorry sorry the good thing and us are good things and things and good and yes we have to have have to and help yes Rob not so Rob but is Rob and will Rob just is being right now is so being is soooo being not being though yes up and take haha take and time will less time an d more Rob ok gonna move and be and go to under where Rob is Rob not Rob but Rob that under strange under
Thanks thanks best best me
I Need A Minute
Slow down No poem on this page.
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Wed, 05 Feb 2025 14:23:46
EmptyFrame forthe Artist Who WasToo Sick To Ever Finish the Work or Make It to theGallery
Artist Talk
Actually,Idon’twanttodothisany more.Can we stop?
Agh. Ok, ok. Thanks.Thank you.
I’m goingtogonow
Hands flipped from up with scrunched fingers to down and flatwithfurrowedeyebrows.
Fistslowered andopenedwith raised eyebrows
Grimace. Nod. Flat handtappedonchinthenmoved forward anddown.
Point to self. Hand pulled away from temple whileclosing fingers. Handsmoved down with wristsupand pinkyand thumbextended.
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Wed, 05 Feb 2025 14:23:46
Original artwor k: Feel free to look.
1. At thedepartment dinner,I drinktoo much andspill to Heathe raboutmy bodydysmorphia. She nods, then shrugs andlaughs, entirelycarefree: It is great to be blind.
2. Iget indecisivetryingtochoose themost perfect avocado whilemaking lunchwith Elaine.WhenI askfor herhelp shestares, givesmea wrysmile. They allfeel thesametomyhands
3. Alex witnessesmydescentintopsychobabble as we walk each other homefromJake’sLaitNight listening to JoyDivision. Thenextday,theytext: Lol, youmademedoubt that Icould read lips
4. When Ioffer Leah oneofmyOreos,she perks up, holds thecookietoher nose,closesher eyesasshe inhales. Ican’t handle thetaste ,but eventually Ifellinlovewiththe smell. Small wins,you know?
Multisensor yreplica:Feel freeto touch, listen, taste, smell.
1. At the department dinner,I drinktoo much and spill to Heatheraboutmy body dysmorphia. She nods, shrugs andlaughsentirelycarefree: It is great to be blind.
2. Iget indecisivetryingtochoose themost perfect avocado whilemaking lunchwith Elaine.WhenI ask forher help shestares, givesmea wrysmile. They allfeel thesametomyhands
3. Alex witnesses my descentinto psychobabble as we walk each other homefromJake’s Lait Night listening to Joy Division. Thenextday,theytexts: Lol, youmade me doubt that Icould read lips
When Ioffer Leah oneofmyOreos,she perks up, holds thecookietoher nose,closesher eyes as she inhales. Ican’t handle thetaste ,but eventually Ifellinlovewiththe smell. Small wins, you know?
Souvenir replica: Feel free to take home with you.
artbody perfect witnesseachother joy yes you
This article was researched and written to the standards of Intellect’s Ethical Guidelines: https://www.intellectbooks.com/ethical-guidelines. No approvals or subject consent were required.
The authors received no specific grant from any public, commercial or not-forprofit agency to aid in the research or writing of this article.
Bartlett, Jennifer, Black, Sheila F. and Northen, Michael (eds) (2011), Beauty is a Verb: The New Poetry of Disability, El Paso, TX: Cinco Puntos Press.
Chandler, Eliza (2019), ‘Introduction: Cripping the arts in Canada’, Canadian Journal of Disability Studies, 8:1, https://doi.org/10.15353/cjds.v8i1.468
Clark, John Lee (2021), ‘Against access’, McSWEENEY’S 64 – The Audio Issue, 28 October, https://audio.mcsweeneys.net/transcripts/against_access.html. Accessed 1 May 2024.
Colgate, Rob Macaisa (2025), Hardly Creatures, Portland, OR: Tin House. Mingus, Mia (2011), ‘Access intimacy: The missing link’, Leaving Evidence, 5 May, https://leavingevidence.wordpress.com/2011/05/05/access-intimacythe-missing-link/. Accessed 1 May 2024.
Zbitnew, Anne, Fullerton, Kim, McMillan, Lenore, Odette, Fran and Grimard, Jennie (2021), ‘Accessibility toolkit: A guide to making art spaces accessible’, Tangled Art + Disability, 1 November, https://tangledarts.org/resources/ resource/accessibility-tool-kit/. Accessed 1 May 2024.
Colgate, Rob Macaisa (2024), ‘Cripping the poem: Visual and literary arts transdisciplinarity in Hardly Creatures’, Journal of Arts & Communities, Special Issue: ‘Transdisciplinarity in Disability, Art, and Design’, 15:2, pp. 207–24, https://doi.org/10.1386/jaac_00061_1
CONTRIBUTOR
Rob Macaisa Colgate is a disabled bakla poet and playwright. A 2024 Ruth Lilly and Dorothy Sargent Rosenberg Fellow, he is the author of the poetry collection Hardly Creatures (Tin House, 2025) and the verse drama My Love is Water (Ugly Duckling Presse, 2025). His work appears in Best New Poets, American Poetry Review and Poets.org, among others, and has received support from MacDowell, Fulbright, Lambda Literary, Sewanee and Kenyon Review. He serves as a reader for POETRY Magazine and managing poetry editor for Foglifter Journal. The inaugural poet-in-residence at Tangled Art + Disability, he received an MFA in poetry and critical disability studies from the New Writers Project at UT Austin.
Contact: University of Alberta Augustana, Founders’ Hall, 4901 46 Avenue, Camrose AB T4V 2R3, Canada. E-mail: rob.colgate@utexas.edu
https://orcid.org/0009-0004-4748-5479
Rob Macaisa Colgate has asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work in the format that was submitted to Intellect Ltd.
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IP: 73.77.110.215
Wed, 05 Feb 2025 14:23:46
journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Article. English language. https://doi.org/10.1386/jaac_00063_1
Received 17 May 2024; Accepted 23 September 2024; Published Online February 2025
SARA HENDREN Northeastern University
ABSTRACT
Psychology and cognition scholar Howard Gardner’s concept of ‘fruitful asynchrony’ provides the foundation for the author to understand her own interdisciplinary work between critical design, engineering and disability studies. The author introduces her own framework of ‘disposition, language, house’ as a further heuristic to understand the interdisciplinary nature of design theory and practice.
For all our academic and creative-practice talk of ‘interdisciplinary’ work –and here I mean interdisciplinary or its variations of transdisciplinary, multidisciplinary, even anti-disciplinary practices – too few of us really know what we mean. Is interdisciplinarity an ethos, a bedrock of orientation from which our work proceeds? Is it a style of expression? A claim about epistemology? The scholarship on these terms indicates ‘no consensus definition’ for these words and the overlap in their meanings. But there is broad consensus on the general need for what they represent: global sociocultural complexities –and disability is surely among them – demand not merely one explanatory paradigm for making knowledge, but more than one (Chen and Luetz 2020;
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KEYWORDS
interdisciplinarity critical design assistive technology adaptive design health humanities disability design creativity theory
Marcovich and Shinn 2011; Oliver 2013; Osborne 2015). Academics and artists therefore find it self-evidently salutary to have an ‘and’ implied in the shapes of their texts or artefacts: tackling this approach and that one, this topic and another, conjoined. We imagine that working in the spaces between disciplines ideally signifies our generativity, curiosity and perhaps our intellectual progress or enlightenment.
Those generous features may indeed be present. We instinctively recognize and celebrate interdisciplinary creativity when we see it beautifully done. But thinkers and makers often settle for the ‘interdisciplinary’ as a vague shorthand – I certainly have done so in my own practice – and we do this to the detriment of our work, in the long run, relying on generalities and affirmations instead of coherence and precision. I want to argue that for those of us working as maker–thinkers, and perhaps especially for those of us working in the interstices among the arts, design and disability, a sharper framing for our work might help clarify our convictions and the forms our work might take. If our work is to proceed from intentional, evolving direction and purpose and the sustained energy required to realize it, we need more than ‘interdisciplinarity’ as a catch-all phrase. We need terms and frameworks that concretize and vivify our in-between projects, and not merely normative rhetorical claims that the presence of more – more forms, more topics, more methods – always enhances the outcome.
It may be that disability is a particularly generative research area for the interdisciplinary instinct (Ellis et al. 2019). The field’s long grappling with mental ‘models’ for disability – whether a medical model, a social model, a bio-cultural model, a design model or something else – displays a restless dissatisfaction with any hint of reductive categorization, because disability’s biological and/or medical realities are inextricably tied to macro- and microhistorical forces, economic policies, cultural symbol systems and beyond (Bhaskar and Danermark 2006; Shakespeare and Watson 2001; Williamson and Guffey 2020).
This lively ‘models’ discourse itself is evidence of the dynamism that implies interdisciplinarity: we know that disability defies tidy categories of identity or diagnostics or history, and we know the field of disability studies needs several explanatory domains to describe it, to account for its meaning and to pose its social, cultural and political concerns. No one explanatory language will suffice to characterize disability’s significance. The ‘interdisciplinary’ and its variants signal this dissatisfaction by claiming the additive status of more than one domain. But again, the generalities are too vague. Disability begs for ever more lucid heuristics and taxonomies, tied to practice – the better to understand and situate the prismatic lens of disability as it touches many domains in the arts, humanities and sciences.
In this article, I begin with a creativity framework articulated by psychologist and education researcher Howard Gardner (1993) and especially his term ‘fruitful asynchrony’ as a conceptual handle for understanding interdisciplinary thinking and expressive activity, whether within or between domains. Instead of positing an additive model (this domain and that domain) or an in-between model (splitting the difference in two domains), Gardner offers a distinctive bracing vision: fruitful asynchrony as productive disjuncture and misfit for the creator–thinker, wherein asynchronies are sites of fecundity and invention. I then offer my own provisional framing – a consideration of one’s creative disposition, language and house – as a way to map a body of work with asynchronies intact, and as one example that might be useful to other
in-between thinkers or makers for clarifying or sharpening formal and methodological choices. Moreover, I hope this making–thinking array might be useful for research-led, practice-based scholarship and creative inquiry across other fields.
Gardner’s (1983, 1993, 2000, 2001) decades-long research addresses human cognition and intelligence, as well as the conditions and habits of mind needed for creativity and ethical reasoning. His book Creating Minds: An Anatomy of Creativity Seen Through the Lives of Freud, Einstein, Picasso, Stravinsky, Eliot, Graham, and Gandhi (1993) offers an in-depth examination of creative individuals whose lasting work has demonstrably shaped the modern era.1 Gardner situates these influential figures within established and more generalized theoretical research on creativity, finding patterns in the lives and careers of his subjects that are instructive for all students of creative practice and scholarship. Citing the influential creativity scholarship of fellow psychologist Mihalyi Csikszentmihalyi, Gardner echoes a related orientation wherein ‘the conventional question, “What is creativity?” [is] replaced by the provocative inquiry, “Where is creativity?”’ (cited in Gardner 1993: 37, emphasis added; See Figure 1). Each of the three points on Gardner’s model constitutes a ‘node’ in setting up the likelihood of creative work; the better to locate creativity’s ‘where’. If all three nodes of his model are set up to be advantageous for the thinker or maker, we might reasonably expect to see creativity flourishing from that ‘synchrony’. But Gardner finds otherwise:
Where there is pure synchrony, all three of the nodes mesh perfectly. One might claim that, in the case of a universally acclaimed prodigy, the prodigy’s talents mesh perfectly with the current structure of the domain and the current tastes of the field. Creativity, however, does not result from such perfect meshes. In using the term asynchrony, I refer to a lack of fit, an unusual pattern, or an irregularity within the creativity triangle. (1993: 41, original emphasis)
For Gardner, asynchronies in and among these nodes are not glitches or misfires in the pursuit of creativity. They are instead frequently robust and catalytic – they are forms of friction that set up the conditions for innovation, recombination, unusual applications or challenges to an existing order.
1. Gardner readily admits that he could have chosen from many other subjects to hold up as creativity exemplars, and he sees the limitations of any group largely drawn from western educated subjects. But the long influence of each figure, together with the ample documentation of his/ her career, made these (ultimately arbitrary) subjects a workable data set for analysis.
Moreover, asynchronies can be seen in multiple dynamic patterns. First, an asynchrony might be observed within each end node of the model. An ‘unusual profile of intelligences within an individual (as when the young Picasso displayed precocious spatial intelligence but very meagre scholastic intelligences)’ is one kind of asynchrony (Gardner 1993: 41). The irregularity might instead (or also) be in ‘a domain that is experiencing a large amount of tension (as when different schools of music were vying for hegemony in Stravinsky’s time)’ or in ‘a field that is just beginning to shift in a new direction’ (Gardner 1993: 41).
Asynchronies might also be experienced between nodes, writes Gardner. ‘[T]he talent profile of an individual may be unusual for a domain (as when Freud’s acute personal intelligences proved atypical in a scientist)’. Or a field and domain may be out of sync: when western classical music was ‘moving sharply in an atonal direction, while the audiences and critics continued to favour tonal music’ (Gardner 1993: 41).
Rather than posit an additive or supplemental model, whereby a domain gains richness simply from an influx of new or extra-disciplinary expertise, Gardner poses a vital, just-right friction that tends to accompany lasting creative work: asynchrony as necessary irregularities and misfits, when held in a useful amount of agitation. The ‘fruitful’ modifier is key, he says:
There can be cases of asynchrony that are too modest or too pronounced; neither proves productive for creativity. An intermediate amount of tension and asynchrony, here named fruitful asynchrony, is desirable… to have substantial asynchrony, without being overwhelmed by it.
(Gardner 1993: 41, original emphasis)
(In the last part of this article, I will return to this difficult-seeming call for an elusive, just-so ‘recipe’ of asynchrony for the maker-thinker.)
The idea that mismatches and frictionful engagements might be not just ordinary but necessary for creative work may come as good or bad news to early career maker-thinkers. But the invitation should ultimately be a galvanizing and reassuring one – to be undistracted and undeterred by what seem at first glance like barriers, and to cultivate the most positive relationships and creative workarounds that make asynchrony not just possible but even adventurous and pleasurable. I will now look with some hindsight on my own creative practice with fruitful asynchrony in mind.
My own work was a series of interdisciplinary pursuits undertaken, initially, by a combination of instinct and creative dissatisfaction. My formal training is in visual arts, intellectual and cultural history, and design, spread in degrees over nearly twenty years’ time. Amidst that drawn-out training, the first of my children was born, a boy with Down syndrome, which expanded my domestic life to include disability and its clinically and educationally professionalized world. Sharing life with my young son, my brain lit up with possibilities and limitations carried in the material culture of prosthetics; I saw both the functional value of technology and its simultaneous symbolic and cultural languages. When he and my two younger children were school age, I took an academic position in the more well-established and intellectually dominant home for
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prosthetics research, but outside my expertise: a school of engineering. I was hired in design with a research programme in assistive and adaptive technologies, but I set out to bring the interest of an artist – in the experimental, the expressive, the symbolic languages – to a technical milieu.
I was eager for this translational challenge because neither the expressive world of fine arts nor the practical realm of technology held the full complement of thinking-and-making that I wanted to see active in my work. Both are necessary, neither sufficient alone.
Prosthetics in the gallery setting or cultural theory frequently operate as metaphors – the body and its many displayed extensions, its replacement parts – sometimes to generative effect, and sometimes excessively abstract. Media theorist, critic and prosthetics user Vivian Sobchack complained in 2006 that the idea of the prosthesis had been put to excessively theoretical use:
[M]ost of the scholars who embrace the prosthetic metaphor far too quickly mobilize their fascination with artificial and ‘posthuman’ extensions of the body in service of a rhetoric (and in some cases, a poetics) that is always located elsewhere – displacing and generalizing the prosthetic before exploring it on its own quite extraordinarily complex, literal (and logical) ground.
(2006: 20, original emphasis)
Sobchack’s skepticism about the purely theoretical interpretation of the prosthesis is echoed by disability scholar Katherine Ott, who exhorts the field to keep prosthetics ‘attached to people’ (Ott 2002: 4). I read that as an invitation to let the studio be more directly in dialogue with the laboratory. But the laboratory also has limits. Prosthetics research and development mostly proceed from the tradition of rehabilitation engineering, with its clinical framing and innovation reward structures held narrowly as technical pursuits (Serlin 2004). How might an artist in an engineering school find a path between? At times, it felt like plain disjuncture rather than fruitful asynchrony to attempt to bridge this divide in a trenchant manner – not just ‘art about science’, gallery objects aestheticizing ideas, but also not aesthetically pleasing technical objects. Subsuming the most probing concerns of either domain was unacceptable, but how could I make work that weaves together the ways and means of each discipline?
The aggregate of my interdisciplinary practice was built slowly on the very frictions and agitations that Gardner identifies. I have been unwittingly in dialogue with Gardner’s schema, benefitting from the distant examples of creative heroes, if only realized in my very modest way. Over time, as I gained a bit of hindsight and perspective, I devised a three-part mapping to understand the different dimensions of my thinking and making. Understanding my work as (1) proceeding from a distinctive disposition, (2) utilizing an intentional language and (3) going out to its public(s) against the backdrop of a metaphorical house – this triad became one useful heuristic for thinking through my own interdisciplinarity with more granular focus, and, I hope, a more fertile paradigm for working.
Let me share some images and context for some of my own projects and then the disposition-language-house framework that emerged in situ, in a fruitful
asynchrony of doing–learning that only arose and became codified with time, trial-and-error, extended conversations inside and outside my fields and creative collaborations of all kinds (See Figure 2).
My work of the last decade has included design research, collaborative artefacts – both practical and expressive – and a mix of scholarly and journalistic writing. Much of the design collaboration work is built on partnerships initiated by disabled people who requested the prototyping and fabrication facilities and expertise at my engineering school. The writing proceeds from extensive interviews and observation about the lives of disabled people. I have worked with engineering students and wheelchair dancer Alice Sheppard on a ramp for stage, and on a navigational cane as a sonic instrument for ‘playing’ the built environment with artist Carmen Papalia. I have worked as a design researcher documenting the low-tech and everyday domestic tools used by a quadruple amputee, gathered in a digital archive. I have overseen students working on collaborative projects in special education classrooms, biomedical technology labs and with individuals on bespoke adaptive gear; we have tried, always, to keep people at the centre of open-ended inquiry. As a journalist, I have written reported stories and commentary about smart home technologies for assisted living, accessible museums and innovative art therapy programmes.
All of these interests, whether in the enigma of the arts or in the workaday utility of accessible tools, whether in co-design and fabrication or in narrative reporting, seek to address disability with as much productive uncertainty as possible. What tools or artefacts are being asked for, and by whom, and for
what ends, and for which audiences and venues? After all, Universal Design –often the go-to ideal for design with disability in mind – is just one possibility for understanding the material culture of disability (Williamson 2019; Hamraie 2017). I have sought to defamiliarize and thereby bring renewed attention to the unpredictable or poetic or otherwise multidimensional meanings of material culture where it meets disability: the extended body with all its gear, and the ideas about assistance, dignity and dependence that are embedded in tangible things (See Figure 3).
In 2010, fruitful asynchrony was not yet in my imagination as an intentional way of working. Influenced by critical and interrogative designers and social practice artists like my mentor, Krzysztof Wodiczko, as well as the work of Natalie Jeremijenko, Mel Chin, Mierle Laderman Ukeles, Graham Pullin, and so many others, I wanted to find a way of keeping questions in disability alive and unresolved, designing towards questions held aloft indefinitely. I wanted to see this same spirit alive on the subject of disability. I wanted to see some assistive technologies do the arresting, discomfiting work of art while not sacrificing the opportunity to design other technologies for everyday practical use. When I witnessed the ingenious work of disabled engineers, designers and artists like Temple Grandin, Josh Miele, Rebecca Horn and Sandie Yi, I saw just how beautifully artefacts could hold contradiction: prosthetics attached to people, but with an array of interpretive registers and potential audiences. The social practice artist Alfredo Jaar has said his best work embodies a close union of poetics and use, neither just one nor the other. From all
these precedent projects and heroes, I got the kind of permission I had been waiting for: to pursue the practical and expressive together.
Much of my work has been presented in galleries or museums, but that same work was mostly produced inside the engineering school where I was a faculty member for nearly a decade. The practical fabrication of those projects often depended on the technical expertise of the school’s laboratory culture and my generous colleagues; but even more importantly to me, the work got its symbolic heft from using the tools and resources of the lab to make studiostyle work: to have the work be seen as squarely within the concerns of engineering, not merely as commentary from outside. Poetics and use, held as closely as possible, in a combination studio-lab (See Figure 4).
Still, I wondered how my body of work might articulate a legible sense of coherence. I wanted to facilitate and join efforts to build pragmatic tools, and I wanted to co-design cultural artefacts, made more for questions than answers, and I wanted to write – to be both critic and maker, thinker and researcher. To give form to ideas, and to let that form start as an agnostic question: whose tool will this be? What are their questions? What artistic or textual form –and what narrative around that form – will give this work its most compelling shape? I did not have the language for it then, but I needed to name a framework for this multitudinous pursuit even though – especially because – it was replete with asynchronies. To use Gardner’s schema, I saw that my training (arts as expressive material culture) was asynchronous with the dominant mode of research in the field (clinical norms in rehabilitation engineering) and that my intellectual strengths (analogical and lateral thinking, poetic adjacency and juxtaposition, an interest in ethics and meta-ethics) were out of step with the valued mindsets of engineering (quantitative thinking and analysis, variable elimination, abstraction from the quotidian). But the conviviality
in prototyping – with relationally led collaborations, and with the embodied cognition that arrives with disability – made these asynchronies fruitful, not frustrating.
I have not been willing to give up any of these practices and ‘pick a lane’. Indeed, I came to see that each mode of working was most meaningful in its adjacency to very different, parallel modes of inquiry: that ‘interdisciplinarity’ might make most sense as a high-contrast suite of projects rather than projects that each seek to arrive in some disciplinary middle. Individual projects might embody more poesis or more utility, depending on a host of factors – but no one aesthetic or intellectual register would govern the entirety of my work. Over time, I started realizing and then stating explicitly that I want to make some work that solves problems, in the best sense of the engineer or everyday designer, but even more, I want to make some work that asks questions, without resolve, in the mode of the artist, with all the experimental restlessness and provisional freedom that word implies. And further, I wanted some of my work to be realized in sense-able things, and some, instead, in critical texts or narrative reporting.
Most of all, I wanted this high-contrast corpus of work to be read together as a lively whole – not unified, exactly, but sharing an orchestrated adjacency by which each project is enhanced by the others around it. I learnt to build that body of work over time, with a lot of stumbling in the dark and a lot of inchoate inclinations, with responsiveness to invitations to collaborate, with an open-ended and supportive academic research environment, and with the serendipity brought about by working in the digital public sphere. I wanted to make works, plural, that speak to the fecundity, variation and urgency in the biological–cultural–technological–social ideas that are held in disability.
Talking about one’s work will train the mind to distil and generalize, and it was while preparing a portfolio talk sometime in the late 2010s that I arrived at the following framework: disposition, language, house (See Figure 5).
I knew I did not want to make work that would start in the studio and end in the gallery only. The art world alone would be too narrow. Social practice works from the Wochen Klausur collective, Pedro Reyes, Marjetica Potrc, Wendy Jacob and Mexico City’s Laboratorio para la Ciudad showed me that use value and useful ends could result from art as its means – and that
utility could even live alongside art’s primary concerns with formal expressiveness and aesthetic defamiliarization. The very latitude earned by art’s agnostics about form allowed it to be responsive to sites and opportunities, to pose possibilities that delivered practical ends as often as beauty, drama or surprise.
In disability, this ‘use value’ in material culture is most apparent in prosthetic technologies – wearable practical gear. That is when I put together the distinction between the disposition I take: the mind and sensibility of an artist interested in juxtaposition, metaphor, symbolism, but using the language of design with all its pragmatic groundedness. Distinguishing between disposition and language helped sharpen my projects – not as a strict formula but as a broad approach.
It was significant to be asking young engineers to stretch their imaginations to the means and methods of art, and it was equally significant to be extending the acceptable concerns for engineering as a researcher and professor in an accreditation structure shaped by the engineering domain. If my work could complicate and bolster practices that had been outside Rehab Engineering’s purview traditionally, could it help make some modest runway for other young makers? Engineering, in other words, was the house for my work: its backdrop and its (frictionful) home. Engineering was both its muse and nemesis. It activated the setting against which my projects could find their contrastive colour.
The ‘Engineering at Home’ collaborative project provides a specific example for seeing this triad at work. A digital archive that gathers and documents the low-tech and domestic tools used by one woman who became a quadruple amputee in her 60s, the ‘Engineering at Home’ project brings aesthetic attention to overlooked and undervalued objects and situates them in an essay linking their ingenious modesty to the larger technological family of prosthetics and assistive technologies (See Figure 6).
6: A collage of low-tech adaptations from the ‘Engineering at Home’ project website, 2016.
The disposition in this project is one of artist but also anthropologist, reflecting the training of the two scholars (anthropologist Caitrin Lynch and myself) who curated the work. The anthropologist gathers material culture around the human animal and sees in that material the evidence of values, both personal and structural; the artist assembles those objects in a collagestyle array, with vivid colour and asymmetry, more like a museum exhibition than a clinical taxonomy. Its language is design: it employs the photographic technique of isolating objects on minimalist backgrounds, making contemplative, even sculptural artefacts out of everyday things. And its house, again, is rehabilitation engineering – a field that primarily supports technical novelty and material innovation. By offering bespoke objects and repurposed household tools framed as equal to more traditional technologies, the project seeks to widen the engineering-led lens on innovation, attending to low-tech, highimpact objects whose technical features are not remarkable in the professionalized laboratory sense. Instead, they follow historian David Edgerton’s evaluative framework, highlighting ‘technology-in-use’ (2006: xi), not merely technical innovation. My anthropologist colleague and I assembled this project as a use-foregrounded look at technology – not merely with a critical–analytical approach that unmasks hidden power dynamics, but with a collection of objects as a set of proposals that help both the maker and thinker see alternatives to the regnant disciplinary frame.
Moreover, our manifesto-style statement about the work is oriented towards engineers and engineering. The project owes its life to the support of our engineering school’s resources, and it is meant to challenge that very literal house – the pedagogies and acceptable questions for engineering curricula – and our engineering researcher counterparts elsewhere. The project has found multiple audiences, thanks especially to our design partners on the work: it won a digital humanities award in anthropology and has been exhibited in multiple museum shows; in 2024, it was accessioned for the permanent collection at the Victoria and Albert Museum.2
Disposition, language, house is one way to make tacit asynchronies both formal and explicit – whether as an exercise to clarify one’s own frictionful work or to identify one’s response to another’s objects or texts. (I think of Rachel Carson – disposition of poet, language of ecology, house of industrial agriculture?3 Or of Jane Jacobs – disposition of mother, language of journalism, house of urban planning?) One can play with and stretch these terms at will; one can test and cast them aside if unhelpful. But the knowledge of fruitful asynchrony’s necessity in interdisciplinary creativity should shore up the confidence and commitment of the maker-thinker. Instead of understanding all points of misfit as power struggles, disciplinary hierarchies or institutional gatekeeping, we might seek ways to (1) build bodies of work assuming a relational model of effectiveness, seeking people and generous partnerships that smooth the rough ground of unshared terms and protocols and (2) assume that asynchronies are invitations for working better, not merely roadblocks. The interdisciplinary maker-thinker must show institutions how to value our work, in part by seeking out the proper venues and audiences – the mixed and perhaps counterintuitive ‘houses’ – for our artefacts and writing, both inside and outside the academy.4 Perhaps, above all, the maker-thinker in disability and interdisciplinary arts might take solace in one of the most potent ideas in disability studies itself: the naturalness and generative position of the misfit as laid out by Rosemarie Garland-Thomson (2011). Where misfits show up to remake the world, asynchronies will surely abound.
2. The project includes website design by Casey Gollan, photography by Michael Maloney and illustrations by Brett Rowley.
3. See Lepore’s (2018) exploration of Carson’s poetic nature and its influence on her work.
4. I am fortunate to work now at a College of Arts, Media, and Design, where ‘Creative Activity’ is held in the same regard as ‘Research’, and where the tenure and promotion protocols have been designed to account for a broader mix of concerns and output.
This article was researched and written to the standards of Intellect’s Ethical Guidelines: https://www.intellectbooks.com/ethical-guidelines. No approvals or subject consent were required.
The authors received no specific grant from any public, commercial or not-forprofit agency to aid in the research or writing of this article.
Bhaskar, Roy and Danermark, Berth (2006), ‘Metatheory, interdisciplinarity and disability research: A critical realist perspective’, Scandinavian Journal of Disability Research , 8:4, pp. 278–97, https://doi.org/10.1080/ 15017410600914329
Chen, Jer-Ming and Luetz, Johannes M. (2020), ‘Mono-/inter-/multi-/trans-/ anti-disciplinarity in research’, in W. Leal Filho, A. M. Azul, L. Brandli, P. G. Özuyar and T. Wall (eds), Quality Education, Encyclopedia of the UN Sustainable Development Goals, Cham: Springer, pp. 562–77.
Edgerton, David (2006), The Shock of the Old: Technology and Global History Since 1900, Oxford: Oxford University Press.
Ellis, Katie, Garland-Thomson, Rosemarie, Kent, Mike and Robertson, Rachel (eds) (2019), Interdisciplinary Approaches to Disability: Looking Towards the Future, Abingdon: Routledge.
Gardner, Howard (1983), Frames of Mind: The Theory of Multiple Intelligences, New York: Basic Books.
Gardner, Howard (1993), Creating Minds: An Anatomy of Creativity Seen Through the Lives of Freud, Einstein, Picasso, Stravinsky, Eliot, Graham, and Gandhi, New York: Basic Books.
Gardner, Howard (2000), Intelligence Reframed: Multiple Intelligences for the 21st Century, New York: Basic Books.
Gardner, Howard (2001), Good Work: When Excellence and Ethics Meet, New York: Basic Books.
Garland-Thomson, Rosemarie (2011), ‘Misfits: A feminist materialist disability concept’, Hypatia, 26:3, pp. 591–609.
Hamraie, Aimi (2017), Building Access: Universal Design and the Politics of Disability, Minneapolis, MN: University of Minnesota Press.
Marcovich, Anne and Shinn, Terry (2011), ‘Where is disciplinarity going? Meeting on the borderland’, Social Science Information, 50:3&4, pp. 582–606, https://doi.org/10.1177/0539018411411036.
Oliver, Mike (2013), ‘The social model of disability: Thirty years on’, Disability & Society, 28:7, pp. 1024–26, https://doi.org/10.1080/09687599.2013.818773.
Osborne, Peter (2015), ‘Problematizing disciplinarity, transdisciplinary problematics’, Theory, Culture & Society, 32:5&6, pp. 3–35, https://doi.org/10.1177/ 0263276415592245
Ott, Katherine (2002), ‘The sum of its parts: An introduction to modern histories of prosthetics’, in K. Ott, D. Serlin and S. Mihm (eds), Artificial Parts, Practical Lives: Modern Histories of Prosthetics, New York: NYU Press, pp. 1–42.
Serlin, David (2004), Replaceable You: Engineering the Body in Postwar America, Chicago, IL: University of Chicago Press.
Sobchack, Vivian (2006), ‘A leg to stand on: Prosthetics, metaphor, and materiality’, in M. Smith and J. Morra (eds), The Prosthetic Impulse: From A Posthuman Present To A Biocultural Future, Cambridge, MA: MIT Press, pp. 17–41.
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Williamson, Bess (2019), Accessible America: A History of Design and Disability, New York: New York University Press.
Williamson, Bess and Guffey, Elizabeth (eds) (2020), Making Disability Modern: Design Histories, London: Bloomsbury.
Czikszentmihaly, Mihaly (1996), Creativity: Flow and the Psychology of Discovery and Invention, New York: HarperCollins.
Hendren, Sara (2020), What Can a Body Do? How We Meet the Built World, New York: Riverhead Books.
Lepore, Jill (2018), ‘The right way to remember Rachel Carson’, The New Yorker, 19 March, https://www.newyorker.com/magazine/2018/03/26/the-rightway-to-remember-rachel-carson. Accessed 25 March 2024.
Owens, Janine (2015), ‘Exploring the critiques of the social model of disability: The transformative possibility of Arendt’s notion of power’, Sociology of Health & Illness, 37:3, pp. 385–403.
Shakespeare, Torn and Watson, Nicholas (2001), ‘The social model of disability: An outdated ideology?’, in S. N. Barnartt and B. M. Altman (eds), Exploring Theories and Expanding Methodologies: Where We Are and Where We Need to Go, Research in Social Science and Disability, vol. 2, Leeds: Emerald Group Publishing Limited, pp. 9–28.
Hendren, Sara (2024), ‘What is your disposition, language, house? “Fruitful asynchrony” and the maker-thinker’, Journal of Arts & Communities, Special Issue: ‘Transdisciplinarity in Disability, Art and Design’, 15:2, pp. 225–37, https://doi.org/10.1386/jaac_00063_1
CONTRIBUTOR
Sara Hendren is an artist, design researcher, writer and professor at Northeastern University. Her book What Can a Body Do? How We Meet the Built World (Riverhead Books, 2020) explores the places where disability shows up in design at all scales: assistive technology, furniture, architecture, urban planning and more. It was named one of the Best Books of 2020 by NPR and won the 2021 Science in Society Journalism book prize. Her art and design works have been exhibited on the White House lawn under the Obama presidency, at the Victoria and Albert Museum, the Seoul Museum of Art, the Vitra Design Museum, and many others, and her work is held in the permanent collections at The Museum of Modern Art (MoMA) and the Cooper Hewitt. She has been an NEH Public Scholar and a fellow at New America, and her commentary and criticism have been published in Harper’s Magazine, Art in America, the New York Times, the Washington Post and elsewhere.
Contact: Northeastern University College of Arts, Media and Design (CAMD), Ryder Hall 102, Boston, MA 02115, USA.
E-mail: s.hendren@northeastern.edu
https://orcid.org/0009-0009-1183-5824
Sara Hendren has asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work in the format that was submitted to Intellect Ltd.
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journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Article. English language. https://doi.org/10.1386/jaac_00067_1
Received 17 May 2024; Accepted 28 September 2024; Published Online February 2025
JILLIAN CROCHET
Independent artist
ABSTRACT
Lumpy Bed is an accessible crip-lounge installation built for the Bay Area Now 9 Triennial. This vibrant chartreuse sculptural landscape, composed of soft, undulating mounds invites communal rest. Carved upholstery foam covered in non-toxic rubber paint is squishy, like a stress-ball for your body – prioritizing the comfort and support of disabled bodies in public spaces. The 8-foot circular bed encourages rest and relaxation, challenging institutional furniture and somatic norms while promoting inclusivity. Through rest performances and physical repairs, the artist engages with the complexities of support and repair, reflecting on the ongoing need for adaptive care of both works of art and the disabled body. Lumpy Bed serves as a prototype towards accessible design and inclusive rest, challenging the norms of our built environment that often does not consider or meet the needs of the disabled body.
Lumpy Bed is an accessible crip-lounge installed during the Bay Area Now 9 Triennial at The Yerba Buena Center for Art in San Francisco. Prioritizing the needs of an array of bodies, Lumpy Bed invites visitors to experience rest and comfort, challenging conventional ideas of furniture and support in public space. By normalizing the needs of the disabled community, we can reimagine who and what is valued and included. Attempting to perform rest, during my Rest Performances, I was reminded how hard it is to rest amidst the constant barrage of horrors happening presently. Capitalism places impossible demands and anxieties on the body, which can cause stress and fractures.
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KEYWORDS
disability
crip accessible furniture crip design crip art nature repair
1. Within the lineage of feminist land art of Meg Webster’s (2021, 1986–88) Moss Mound and Moss Bed
2. It crips large-scale art installations that one might lounge on, like Andrea Zittel’s (1998) foam rock formations Raugh Furniture
3. This work crips 1970s modular furniture of the Radical Design movement (Hucal 2018), referencing the Gufram Pratone chair (Ceretti et al. 1971), and Ubald Klug’s (1973) Terrazza sofa blending natural and artificial elements in a surreal and experimental playfulness.
4. In conversation with disabled artists: Navild Acosta and Fannie Sosa, and the critical work of Black Power Naps (2023), that addresses the racial sleep gap by creating a space to prioritize respite and pleasure for black visitors, the beds of Alex Dolores Salerno (2020), and Finnegan Shannon’s (2018–present) call for rest in the institution through their Do You Want Us Here or Not? benches.
5. Arguments and critiques of the built environment by disabled writers and theorists such as Eli Clare (2017) and Allison Kafer (2013) are foundational to my practice.
It is no surprise really, that something attempting to softly hold our bodies, cracked under the weight of it all. As an experimental work, Lumpy Bed serves not only as a site of rest but also as a reminder of the importance of maintenance and repair in not only art but also the body and the systems that support us.
The chartreuse green undulating mounds mimic a patch of mossy mounds1 or a hillside (scaled way down) creating a bed-like sculpture of gentle pillowy mounds to lounge in/against.2 The modular landscape3 is made of carved upholstery foam on a wooden-base and covered in non-toxic and latex-free chartreuse rubber paint – like a giant squishy stress-ball for your body Lumpy Bed was imagined as a place to rest in crip-community. The 8-foot circular bed is large enough for a small group of two to four people to lounge comfortably. (Even though it held many more, all at once, during the opening and other events.) It is a site for rest and comfort where bodies can lounge and relax – and feel held and supported. The height of the valleys (where one might sit) is varied in height and the hills recline at various angles – appropriate for a broad spectrum of bodies and needs. It features a bedside handrail for support of wobbly bodies. It is just the right amount of squishy to be soft but supportive (as a wobbly disabled wheelchair user, I was able to transfer and then roll around and crawl about in glee). There are autonomous ottoman-like mounds that could prop up your feet or be used as floor cushions to sit on or lay against. In my dream scenario, it grows with many modular pieces, a landscape taking over a room with many more variations in heights and inclines and access tools – step-stools and transfer benches, grab bars in the middle of clumps of mounds and maybe even a transfer lift.
Lumpy Bed prioritizes and normalizes the needs of the disabled body, in institutions that often exclude us – making space to allow for leisurely rest and taking into account different support needs. It challenges rigid standards around ‘furniture’ and how bodies ‘should’ exist in public. Furniture is often built for certain kinds of bodies and not very comfortable in institutional settings. If there even is seating in a museum, it is usually a hard bench without back support – and they are few and far between.4 A bed for laying and lounging in an institutional space blends the private and the public – where resting typically is not encouraged.
As a disabled power chair user, the inaccessibility of the built environment is a relentless source of grief and frustration. I am often excluded from enjoying the natural environment because trails are built and maintained for ablebodies. I want people to dissolve the separation of natural/unnatural, private/ public – because the built environment (from seating in museums to trails in parks)5 is just a surreal blur that we can reimagine as inclusive. If all nature is built, Lumpy Bed is a prototype towards accessible nature. If we accept plastic as now part of our natural world – then disabled bodies and their needs for survival/access tools (from wheelchairs to grab bars) are natural.
During the run of the show, I performed rest performances, where I rested and lounged. It was a very relaxed and crip-ed version of endurance-based durational performances I have done in the past. It was a different kind of challenge – to rest in a large space reverberating with dissonant sound pieces and discordant energy. There were remnants of a protest some of the artists participated in during the show – against the genocide in Palestine – and the fallout of the institution’s regrettable decision to censor the entire show by closing for a month following the protest. There was a lot to wrestle with emotionally, lying there, touching the stress-fractures on my work, wrought by
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Figure 1: Lumpy Bed is a lounge made of squishy upholstery foam covered in smooth rubber paint. The lowest seat base is a little over 2 feet, the tallest hill is 3.25 feet high. It is 7 feet × 8 feet in diameter. Courtesy of YBCA. Photograph credit: Tommy Lau.
2: The top view of the chartreuse green Lumpy Bed. Courtesy of YBCA Photograph credit: Tommy Lau.
the irreverent abuse by visitors and the weight of bodies, looking at and thinking about all of the turmoil made visible (and invisible) in a show that was filled with works about a diverse array of heavy and important social justice issues.
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Figure 3: Lumpy Bed in profile, the two independent lumps function like moveable ottomans or floor cushions. There is a curved handrail for transfers. Work by José Joaquin Figueroa in the background. Courtesy of YBCA. Photograph credit: Tommy Lau.
4: Two people contentedly lounging, O Vegh and Brooke Vlasich. Courtesy of YBCA. Photograph credit: Tommy Lau.
Lumpy Bed was well loved – lots of people sat and lounged, and many children jumped and bounced – and after several months of supporting many bodies, it developed large stress-fractures and cracks. Instead of hiding the mess and the process of repair (which is the institutional norm when works
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need to be repaired during an exhibition-run), it was stanchioned-off ‘In Repair’ for several weeks while we were testing and troubleshooting a way to mend and reinforce it. Of course, I hated that this work was not usable during that time, a reminder of the often derelict and broken disabled access in society, such as the ever-infuriating broken elevators constantly making buildings
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Figure 7: Lumpy Bed covered with people, behind it is a wall of hundreds of tiny sketches by Jose Figueroa and a tall ladder sculpture by Nicole Shaffer is in the background. Photograph credit: the artist.
Figure 8: A surface detail that is marked with cracks after months supporting the weight of many people resting (and children jumping). Photograph credit: the artist.
and transit inaccessible for wheelchair users. But this work was completely experimental – a working large-scale prototype – using an off-label surface treatment based on stress-ball textures, many research rabbit-holes and a lot of tests. I wanted to be transparent about the process, so a sign next to the
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Figure 9: A surface detail during repair. It was repaired while the show was open and stanchioned-off with a sign that said: ‘In repairs: This is an experimental work in process. Like our own bodies, art that supports and touches bodies requires adaptive care and repair. Support and care is a continual process and practice’. Mender and photograph credit: Bella Manfredi.
stanchioned work said, ‘In repair. This is an experimental work in process. Like our own bodies, art that supports and touches bodies requires adaptive care and repair. Support and care is a continual process and practice’.
I feel it is important to note that all works that are interactive must require maintenance and repair, I imagine repairing the playground-like woven structures of Erneto Neto’s (2021) SunForceOceanLife, and Ann Hamilton’s (2012) The Event of a Thread must have been a constant ordeal. I wonder what is required to maintain the softly rolling hills in the land work Wavefield by Maya Lin (2009)? Most large work,6 including most of the work in the show at YBCA, requires a team of support and assistants – but help is taboo, we do not talk about or see it, it is gossip amongst preparators. When a disabled person requires assistance, society looks at that as a failing or burden, instead of the norm – that all bodies rely on interdependence. I think a lag in necessary support becomes apparent in institutions because most institutions are running on budget cuts and finite resources that rely too heavily on arts workers who
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6. I found myself on a research rabbithole trying to find information about land art maintenance, after finding out Nancy Holt’s (1979–80) Starcrossed is in disrepair. It is actually an issue across the board, which is a tangent I will have to follow later, because there is never enough time (Halperin 2024; Howard 2019).
Photograph
are short-staffed and depleted. In future, ideal scenarios, this work will be supported by professional fabricators and designers who have experience with experimental furniture design to bolster durability and troubleshoot repairs. But for an overly ambitious disabled artist leading research and fabrication with a
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handful of assistants and preparators within just a few short months7 – making it up as we went – it really was a great step towards making something I dreamed up come to life.
Thanks to all the hands and care that went into Lumpy Bed, including but not limited to:
Justin Nagel
Jordan Held
Amy Kisch
Martin Strickland
Fiona Ball
O Soo Vegh
Yoni Asega
David Tim
Bella Manfredi
Maren Mouhanna
Rosheika Hopkins
Larenzo Barr
rossie
Mattress Factory and The Yerba Buena Center for the Arts.
ETHICS STATEMENT
This article was researched and written to the standards of Intellect’s Ethical Guidelines: https://www.intellectbooks.com/ethical-guidelines. No approvals or subject consent were required.
The authors received no specific grant from any public, commercial or not-forprofit agency to aid in the research or writing of this article.
Acosta, Navild and Sosa, Fannie (2023), Black Power Naps, installation, Museum of Modern Art, New York, 19 January–14 May.
Ceretti, Giorgio, Derossi, Pietro and Rosso, Riccardo (1971), Pratone, Italy: Gufram.
Clare, Eli (2017), Brilliant Imperfection: Grappling with Cure, Durham, NC and London: Duke University Press.
Halperin, Julia (2024), ‘A leading land art installation is imperiled: By its Patron’, New York Times, 22 January, https://www.nytimes.com/2024/01/22/ arts/design/mary-miss-land-art-des-moines-museum.html . Accessed 11 November 2024.
Hamilton, Ann (2012), The Event of a Thread, installation, Park Avenue Amory, New York, 5 December 2012–6 January 2013.
Holt, Nancy (1979–80), Star-Crossed: Earth, Concrete, Steel, Water, Grass, Oxford, OH: Miami University Art Museum (now Richard and Carole Cocks Art Museum).
Howard, Christopher (2019), Collecting Land Art: How Earthworks Challenge Patronage , Art in America, https://www.artnews.com/art-in-america/ features/land-art-robert-smithson-james-turrell-challenges-60181/ Accessed 22 January 2024.
7. Trying to make work to meet short deadlines while navigating crip-time is really, really hard. It often means pushing my body beyond my limitations. Keeping up with the fast pace art world is a grind that is not inclusive of the needs of the disabled body and can cause harm. Although, I admit, I invent my own challenges/dreams/ artwork – when time is fleeting and slippery with a disability that likely will cause a foreshortened future, I feel an urgency to take big risks with ambitious works. I feel like a hypocrite, making work about rest that didn’t honor my own rest needs. So I want to name that it’s a struggle and a constant negotiation – a practice- to work within the capitalist systems of the art world (and the world at large). Advocating for (and knowing/naming/ listening to) your needs as a disabled artist is invisible, exhausting labor that is the messy act of figuring it out as you go and the internal negotiation of self-worth (internalized ableism) up against the value systems, parameters and constraints of the institution. I hope to honour my body more with longer project timelines, in future works. And I hope the art world will meet the support and time needs of the disabled body.
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Hucal, Sarah (2018), ‘What makes design “radical”?’, Curbed, 4 January, https:// archive.curbed.com/2018/1/4/16851074/superdesign-r-and-company Accessed 11 November 2024.
Kafer, Allison (2013), Feminist, Queer, Crip, Bloomington, IN: Indiana University Press.
Klug, Ubald (1973), Terrazza, Klingnau: De Sede.
Lin, Maya (2009), Storm King Wavefield: Earth and Grass, New Windsor, NY: Storm King Art Center.
Neto, Erneto (2021), SunForceOceanLife: Crocheted Textile and Plastic Balls, installation, The Museum of Fine Arts, Houston, TX, 30 May–26 September. Salerno, Alex Dolores (2020), At Work (Grounding Tactics), New York: The Fourth Floor.
Shannon, Finnegan (2018–present), Do You Want Us Here or Not?, https:// shannonfinnegan.com/do-you-want-us-here-or-not. Accessed 22 January 2024.
Webster, Meg (1986–88), Moss Bed, King, Dormant moss, Venice: Venice Biennale.
Webster, Meg (2021), Moss Mound: Peat with Green Moss, New York: The Arts Center at Governors Island.
Zittel, Andrea (1998), Raugh Furniture: Grey Foam, New York: Andrea Rosen.
Lakshmi Piepzna-Samarasinha, Leah (2018), Care Work: Dreaming Disability Justice, Vancouver: Aresenal Pulp Press.
Crochet, Jillian (2024), ‘Lumpy Bed: A prototype towards holding bodies’, Journal of Arts & Communities, Special Issue: ‘Transdisciplinarity in Disability, Art and Design’, 15:2, pp. 239–48, https://doi.org/10.1386/jaac_00067_1
Jillian Crochet is a Bay Area disabled artist working in sculpture, video and performance to confront grief and disability. Her work questions: What is natural/unnatural? What bodies are included/excluded – important? In 2021, she was awarded an Emerging Artist Fellowship from the California Arts Council. In 2020–21, she was an artist in Residence at Art Beyond Sight’s and a Graduate Fellow at Headlands Center for the Arts. She has shown work at Yerba Buena Center for the Arts, Museum für Moderne Kunst in Frankfurt, Germany, the Contemporary Jewish Museum in San Francisco, CA, the Mobile Museum of Art and the Alabama Contemporary Art Center and has published work in Able Zine in London, RACAR in Canada and Feral Fabric Journal. She has presented work at MAD Museum, Stanford, and BAMPFA. She earned her BFA from the University of Alabama in 2007 and an MFA in fine arts at California College of the Arts in 2020.
E-mail: jilliancrochet@gmail.com
https://orcid.org/0009-0005-7570-6635
Jillian Crochet has asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work in the format that was submitted to Intellect Ltd.
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journal of arts & communities
Volume 15 Number 2
© 2024 Intellect Ltd Article. English language. https://doi.org/10.1386/jaac_00059_1
Received 25 May 2024; Accepted 31 August 2024; Published Online February 2025
BREE HADLEY
Queensland University of Technology
ABSTRACT
In this article, I draw on a developing body of archival research into disability arts in Australia to consider how changes in training, production and presentation, accessibility, funding, politics, aesthetics and audience engagement practices have influenced the development of disciplinary and transdisciplinary work in the field. Disability arts in Australia is recognized globally for its innovation and impact. Efforts to document this legacy as part of the Australian Research Council funded The Evolution of Disability Arts in Australia project have highlighted the challenge of tracing the history of historically marginalized artists who have not always had the time, space, platforms and support to create work or hold collections recording the creation of that work in formats, modes and
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KEYWORDS
disability arts Australia history policy access participation employment sustainability
media meaningful to the creators. These challenges notwithstanding, records of companies and recollections of practitioners collected during this project are providing insight into when, where and how artists have produced work. More critically, they are showing how changes in policy, funding, training, development and creative development opportunities, and platforms for disabled artists to take a leadership role have served as a generative, reductive or exploitative force shaping the evolution of performing and visual arts work. This includes differences in the development of performing and visual arts practices. In this article, I consider how reflecting on this history, and the way it has produced a range of a practices – disciplinary and transdisciplinary, personal, social and political, ensemble and individual, in a range of relationships to mainstream theatres, galleries and museums – can assist in understanding how the celebrated body of work for which Australian disabled artists have become known has evolved, and how policy-makers can support these artists to continue to innovate in future.
Disability arts in Australia is recognized globally for its innovation and impact (Hadley 2017; Hadley et al. 2022). In this article, I reflect on archival research into disability arts in Australia, including in The Evolution of Disability Arts in Australia project, where I have been working to build an online record of practices in collaboration with a multi-institutional team of researchers and a Steering Committee of artists, allies and arts organization representatives from around Australia. I review learnings from our research to date through the lens of disciplinary and interdisciplinary practice, across film, theatre, dance, music, visual arts and creative writing. I consider what we have learned about how changes in policy, funding, training, production and audience development practice impact the evolution of this field from the 1970s to date. I focus on how these changes serve as a generative, reductive or exploitative force shaping the evolution of performing, visual and creative arts practice by disabled artists in Australia. I identify trends in the field of practice, including the historical operation of disability arts in Australia in collective or ensemble models, in parallel to mainstream practices, except in one-off festivals and events. I examine the approaches long-running companies have used to support artists to enter the field, develop their interests, innovate and experiment across and between artforms. I consider how an understanding of this history can help artists, artsworkers, producers, policy-makers and researchers seeking to support disabled artists to continue to innovate in the present, and into the future.
Disability arts play a critical role in the production of disability culture (Dupré 2012), and – through its connection to advocacy, activism and politics –the pursuit of the right to self-expression, participation, employment and economic opportunity we are afforded under the United Nations Convention on the Rights of Persons with Disabilities (Article 30).
In Australia, the expansion of disability arts over the last five decades has occurred alongside political action in the disability community and changes in disability policy, social policy and social services provision (Cho 1980; AIHW 1993; Butler-Rees and Hadley 2023).
Tracing the history of disability arts in Australia remains difficult. In The Evolution of Disability Arts in Australia project and three cycles of work with the AusStage Australian live performance database to date, we have used web-based searches of reviews, media and social media records, and individual and company websites to start identifying the nature, scope and critical moments of change in practice in this field. Where funding has permitted, we have travelled to scan documents held by individuals, companies and state libraries. We have also, as part of The Evolution of Disability Arts in Australia project, conducted interviews with around fifty artists and allies.
A useful emergent method, led by Morgan Batch as part of the AusStage project, has been plotting disability theatre practice, arts policy change and social policy changes along a timeline. In work led by Annie Rolfe in the subsequent Evolution of Disability Arts in Australia project, this expanded to include all artforms and collaborator Caitlin Vaughn from Creative Australia (n.d.) proposed community co-creation of the timeline. Our Steering Committee has agreed to recognize entries based on conventional archival records and on shared community recollections.
We have adopted this approach because we confront the challenge of tracing the work of historically marginalized artists in a context where artists, arts organizations and allies did not have the time, space, platforms and support to create or retain documentation of their process and/or archives did not collect the documentation.
Some long-running companies have scholarly accounts of their work and records of their history online – Back to Back Theatre in Geelong, Victoria, for example (Back to Back Theatre n.d.; Grehan and Eckersall 2013). Others have well-catalogued records held within the organizations – Tutti Arts in Adelaide, South Australia, for example. Funding agencies such as Creative Australia can provide information about past policy, funding and research. However, small, historically member-based organizations often have annual reports, newsletters, programme flyers, occasional publications and other records held in uncatalogued boxes in offices and/or state libraries, and have limited capacity to assist researchers seeking to sort, scan and confirm permission to use materials.
Our approach has allowed us to collect historical publications back to 1980s, over one thousand records from over thirty arts organizations, access arts organizations and funding agencies, along with over fifty interviews for the disability arts history website we are building, plus enter details of nearly one thousand five hundred theatre, drama and performance events into AusStage database over last eight years. We feel this partial, imperfect start to presenting undocumented histories is better than no attempt at all.
In Australia, arts programmes in institutional settings precede ally-led arts and disability’ and disability-led disability arts practice (Hadley 2017; Hadley and McDonald 2019). The Dax Centre, for example, records that the Chairman of the Mental Hygiene Authority in Melbourne, English psychiatrist Dr Eric Cunningham Dax, began an arts therapy programme in 1952 (The Dax Centre n.d.).
In the 1960s and 1970s, arts practice in institutional settings is influenced by activist calls for change in attitudes, legislation and disability policy and service provision, leading to the 1975 Declaration of the Rights of Persons
with Disability (Butler-Rees and Hadley 2023). In the film, we see J. M. Lovett and the Deaf Film Society, in association with the Deaf Adult Society of Victoria, creating a documentary on the experience of d/Deaf Australians in 1970 (Lovett 2016). In theatre, we see the launch of the Australian Theatre of the Deaf in 1973, with tours from 1974, and full professionalization from 1979 (Deaf in NSW: A Community History n.d.; Colefax and Lawrence 1999; Missingham and Hadley 2022), and growth in state theatres of the Deaf. In the visual arts, Myra Hilgendorf founded the Arts Project Australia in 1974 to professionally present the work of artists with intellectual disability (Arts Projects Australia n.d.a). The 1974/75 Annual Report of the newly established Australia Council for the Arts – from 2023, known as Creative Australia – notes funding for equipment for jewellery making for the Wheelchair and Disabled Association of New South Wales. Their 1979 Annual Report notes support for the Braille Book of the year. The impact of calls to move from a medical model, which sees disability as an individual problem, to a social model, which sees disability as a result of attitudes, systems, infrastructure and architecture, is clear (Oliver 1996, 2013; Shakespeare 2010). Artists and allies emphasize selfexpression, professionalization and employment and economic opportunity through presentation in mainstream programmes, companies and venues.
In the 1980s and 1990s, policy, funding and social change associated with the deinstitutionalization in Australia, along with new companies emerging following festival activity during the International Year of Persons with Disability in 1981, provided momentum for further growth (Hadley et al. 2023). In 1981, Film Australia produced a series on the lives of Australians with disability (Ricketson 1981). In 1996, a comedy series, House Gang, featuring three actors with intellectual disability, Ruth Cromer, Saxon Graham and Chris Greenwood, playing characters living in a share house, premiered on state-funded SBS Special Broadcasting Service (Smith and Mason 1996). Back to Back Theatre was established in 1987. Theatre ensemble Fusion Theatre was established in Melbourne, Victoria, in 1997. Restless Dance Theatre was established in Adelaide, South Australia, in 1991. Inaugural Australia Council National Arts and Disability Award winner Janice Florence established Weave Movement Theatre (n.d.) in Melbourne, Victoria, in 1997. Arts Projects Australia (n.d.a) started a studio programme in 1984. As institutions began to close, the Dax Collection acquired patient work – presented in the National Gallery of Australia from 1981 until its return to the Collection in 1994 and other galleries – and shifted its mission to focus on work by a range of artists and communities experiencing psychological trauma (The Dax Centre n.d.). In 1991, blind musician, singer and songwriter from the Gumati Clan on Elcho Island Geoffrey Gurrumul Yunupingu and his band Yothu Yindi had a mainstream hit with Treaty from their album Tribal Voice (Gurrumul n.d.; Yothu Yindi n.d.). In 1996, Ian Cooper held the first National Braille Music Camp (Australian Braille Authority n.d.). Australia Council Ros Bower Award for Community Arts and Cultural Development Award winner Pat Rix established Tutti Arts as a choir for people with and without disabilities in 1997, which soon grew to add a visual arts programme, and is today a multiarts organization (Tutti Arts n.d.). International opera singer Janelle Colquhoun founded Salubrious Productions (n.d.), with support from Access Arts, in 1999 – a company that has since presented thousands of concerts and recordings by hundreds of disabled artists.
The 1980s and 1990s also saw the establishment of access arts organizations – Arts Access Victoria in 1977, Arts Access in Queensland in 1983,
Accessible Arts in New South Wales in 1986, DADAA in Western Australia in 1986, and what is now known as Incite Arts (previously Alice Springs Youth Arts Group) in the Northern Territory in 1998, what is now known as Access2Arts (previously Arts in Action) in South Australia in 1998 (Hadley 2017; Hadley et al. 2023). These organizations have been critical in supporting social and economic participation, education and employment in the arts. They have provided entry points for artists excluded from conventional pathways, socially oriented arts programmes in theatre, music, visual arts, film and digital media, as well as supporting artistic and career development.
The access arts organizations have also supported the festival programming that has been a frequent feature of the development of disability arts in Australia (Hadley et al. 2023). For example, Arts in Action – today Access2Arts – in collaboration with SPAR Disability Foundation, produced the ten-day biennial multiarts High Beam Festival for ten years from 1998, attracting up to 20,000 attendees and showcasing both local and globally acclaimed artists.
In the 2000s, dedicated policy and funding provision in the lead up to and then under Australia’s first National Arts and Disability Strategy (Commonwealth of Australia 2009) supported further growth. In 2003, Access Arts in Queensland hosted the Asia-Pacific Wataboshi festival in Brisbane, with David Helfgott as an ambassador, to raise the profile of disability arts. In 2004, Arts Access Victoria (n.d.) launched Australia’s first disability-led film festival, The Other Film Festival. In 2009, Martin Wren, the CEO of NOVA Employment, launched the ‘Focus on Ability’ film festival (n.d.). In 2010, Tutti launched the learning disability-led film festival Sit Down Shut up & Watch! (Tutti Arts n.d.b). From 2015, Access Arts, in collaboration with Queensland Theatre, hosted the Undercover Artist Festival to showcase outstanding performing arts (Undercover Artist n.d.). In 2017, the Sydney Film Festival launched the Screenability programme to showcase the work of filmmakers with disability (Accessible Arts 2018). From 2017, Flow Festival Australia was launched as a platform for established and emerging d/Deaf artists (Flow Festival n.d.).
In theatre, dance and performance, many influential new companies were established, producing spoken word, dance theatre and physical theatre, musical theatre and opera, performance, public and installation art, and film projects, sometimes in collaboration with mainstream companies. This includes No Strings Attached (established 1994), Rawcus Theatre (2000), Second Echo Ensemble (2005), Ever After Theatre Company (2006), Rollercoaster Theatre Company (2007), Blue Roo Theatre Company (2009), Sprung Dance Theatre (2012), Indelability arts (2015) and Aha Ensemble (2015), amongst others (Hadley 2017).
In visual arts, Studio A (n.d.) was established in 2000, in a social enterprise model, to support the artistic and economic aspirations of artists with intellectual disabilities across a range of media. In addition to exhibitions, public art and interactive art, Studio A (n.d.b) supports an online shop with a range of original art, prints and merchandise for sale as part of their stated mission to support artists to earn income, like Arts Projects Australia (n.d.a). NunnaRon was established by the First Peoples with Disability Network in 2018 as a group for Aboriginal and Torres Strait Islander artists living with disability. In music, Off the List Records (n.d.) was launched to support the work of musicians with disability in 2020. In creative writing, life writing by disabled authors has been recognized. Author Gayle Kennedy is known for Me, Antman, and Fleabag (2007), describing her life as a First Nations woman
with polio in comic vignettes (White 2020). In 2021, Carly Findlay, author of her own memoir Say Hello (Findlay 2019), published work by Kennedy and 50 other writers in Growing Up Disabled in Australia (Findlay 2021).
In the 2020s, the sector shows the impact of a decade’s growth and change. New artists and companies continue to emerge, and the multiarts and festival programmes offered by the access arts organizations continue to play a critical role – including in creating connections to the mainstream. In 2023, Arts Access Victoria (2024) in collaboration with Arts Centre Melbourne launched a new disability arts, creativity and culture festival Alter State
The introduction of the National Disability Insurance Scheme (NDIS) in 2013, with a nationwide roll out in 2020, has seen the withdrawal of block funding that previously supported a lot of therapeutic and communityoriented arts and disability practice. This has been transformative, challenging – and in some cases, exploitative as new players with limited experience enter the field and ‘shoehorn’ activities into arts therapy models to meet funding requirements (Hadley et al. 2019). Some established companies have registered to run the community, therapeutic and ‘outsider’ arts practices that continue to operate concurrently with professional practice with payment from clients’ NDIS plans. Others have found registration, reporting and compliance cost prohibitive.
A National Arts and Disability Strategy (Commonwealth of Australia 2009) clearly has provided dedicated funding and support for a larger landscape of professional practice. However, our own research, census data and community consultation in the lead up to the launch of Creative Australia’s new Revive: National Cultural Policy all suggests barriers to access, education, employment and economic opportunity have been slow to shift (Commonwealth of Australia 2018; Australia Council for the Arts 2021; Commonwealth of Australia 2023).
In the 1970s, 1980s and 1980s, disability arts in Australia sought to bring artists and their work onto the screens, stages, walls and pages from which we have historically been excluded. The goal was to disrupt stereotypes of disability as a symbol of pity or inspiration, and create self-expression, employment and economic opportunities (Hadley 2014; Ellis 2016; Hadley and McDonald 2019). The work was immediately praised for its quality, artistry and capacity to contribute to the cultural landscape.
What our research suggests, however, is that – with the exception of oneoff disability, community and outreach events – disabled artists have presented in the same venues, but largely parallel to mainstream programmes, until well into the 2000s (Hadley et al. 2023). While artists in some forms have established solo profiles – creative writing, for example – those in performing and visual arts have worked in collectives or ensembles, and it is only recently we see the emergence of high-profile individual artists. Working with established ensembles, who mediate relationships with mainstream programmes, producers and venues, helps address the burden of having to explain access requirements, approaches and aesthetics in an industry where disability culture is not understood (Hadley et al. 2023). This appears to lead to at least five observable trends or themes in practice.
First, long-running companies, ensembles and collectives have played a critical role in co-creating techniques to support the personal, artistic and
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career development of artists who may not have had access to conventional training pathways, and thus in the development of methods and aesthetics in the field.
Second, and following on from this, these companies have supported multiarts practice. The access arts organizations have, from their inception – as disability arts organizations or from community and youth arts organizations – been multiarts. Other long-running organizations in the performing and, to some degree, the visual arts have supported evolving training, production and presentation opportunities aligned with artists evolving access requirements and aesthetic interests, as well as funding, resources and partnerships available in the field. Tutti Arts began as a choir, added visual arts and now supports all genres. Back to Back Theatre (n.d.a) now has screen projects including most recently translating The Shadow Whose Prey the Hunter Becomes (Back to Back Theatre 2020) into a film SHADOW (Back to Back Theatre 2022), available on Netflix. This allows artists to engage in-between and across artforms, as suits their interests, and allows artists to grow, change and evolve their practices over time.
Third, this approach leads many companies to experiment with cutting edge, innovative, interdisciplinary aesthetics, including emergent new media. Established in 2012, Sprung Dance Theatre has a core ensemble, and community workshops, and over a decade’s history creating work with noted dance theatre practitioners from around Australia. In Awakening (2017) and Heavy Light (2023), the ensemble collaborated with artist Andrew Christie to explore the use of digital technology, visualizations, virtual reality and 3D printing in their work. Similar experimentation is seen in the work of Studio A artists across exhibitions, public art and interactive art – for example, visual, performance and digital artist Skye Saxon’s online Madame Witch Tarot Card readings (Saxon 2021; Studio A n.d.a).
Fourth, for many artists and companies, this extends to work in unconventional spaces – physical and digital – to engage new ideas, aesthetics and audiences in new ways (Cachia 2013; Hadley 2014). In the Greenroom Award-winning Imagined Touch by Deafblind performer Heather Lawson and Deafblind pianist Michelle Stevens with Jodee Mundy Collaborations, headphones and goggles enable audience members to experience their stories of access, inclusion and exclusion through tactile senses (Jodee Mundy Collaborations 2016). In Intimate Space, the Restless Dance theatre performers lead audiences of around ten people from the public foyers, bars, restaurants and rooms hotel – in the premiere, the Hilton Hotel in Adelaide during the Adelaide Arts Festival in 2017 – into services areas usually occupied by cooks, cleaners and other service personal, engaging them in playful and thought provoking interactions in spaces not normally occupied (Restless Dance Theatre 2017; Hadley et al. 2024). In An Unlikely Tour (Crossroad Arts 2018), multiarts organization Crossroad Arts – whose practices include public art, performance, music and photography – invite the audience to engage in a range of encounters throughout the regional Queensland city of Mackay over three nights (Crossroad Arts 2018). In Absolutely Everybody Judges, by Aha Ensemble, audiences are invited into a gallery, with videos of people who have been watched and judged at one end, and a seat in front of a mirror at the other. On opening night in 2022, and scheduled dates during the installation, viewers then began hearing the ensemble, unseen, in the other half of the gallery, behind the mirrored wall – ‘I see someone who is’ (Absolutely Everybody Judges 2022).
In a number of recent works, artists are incorporating Auslan interpretation, caption, audio description and ‘relaxed’ conventions to embed universal access for artists and audiences into the aesthetic of the work (Hadley 2022). Indelability Arts, established in 2015, for instance, has collaborated with Karen Lee Roberts to create Wilbur the Optical Whale based on her book, premiered at the Adelaide Fringe Festival, before presentation at the Brisbane Festival (Indelability Arts 2020). The work used relaxed conventions, in an immersive space, with Auslan interpretation in the projected landscape of the undersea world of this anti-bullying story for young audiences.
Innovative, interdisciplinary, interactive work in alternative spaces, modes and media allows disabled artists go beyond speaking back to stereotypes, on the screens, stages, walls or pages from which we have historically been excluded. It becomes what Irit Rogoff (2003, 2006) calls embodied criticality, which invites disabled and non-disabled audiences to engage, re-enact and reimagine social relationships (Hadley et al. 2024). It moves beyond a social model of disability (Shakespeare and Watson 2001) into a critical model of disability that acknowledges the psychological, social, educational, economic and political factors that combine to create cultural understandings of disability (Shakespeare and Watson 2001; Meekoska and Shuttleworth 2009; Shakespeare 2010; Oliver 2013; Shildrick 2019).
Fifth, companies engaged in this type of work have begun engaging in a practice we are referring to as ‘sprouting’, developing new generations of artists. Companies like Back to Back Theatre, for example, share their approaches, processes and methods through a two-day weekend CAMP for artists with and without disability, and, also, workshops they deliver in residencies with other companies. They support ensemble members to pursue individual projects which result in their own new works. In 2015, for example, Scott Price, a member of Back to Back Theatre’s ensemble since 2007, worked with director Tamara Searle and filmmaker Rhian Hinkley to create a video blog series about attitudes to disabled people called Price ( Back to Back Theatre 2019). Indelability Arts, Access Arts and the Undercover Artist Festival support similar pathways to success for artists. In 2020, indelability arts ensemble member and Australia Council National Arts and Disability Leadership Award winner Madeline Little was appointed Festival Director for the Undercover Artist Festival run by Access Arts, independently, and since 2021 as a programme in the Brisbane Festival. In 2021, Little programmed the development and then the premiere of indelability arts ensemble member Oliver Hetherington Page’s work in The No Bang Theory in the festival (Indelability Arts 2021).
These sorts of relationships between artists, companies and festivals provide a fertile training and development ground for artists, including artists who have not had the benefit of training conservatory or tertiary contexts. Long term and emerging leaders of the companies – both disabled identified artists and allies – support disabled artists to generate work in and beyond the company, as individuals or smaller collectives, in a ‘sprouting’ that continues to develop disability-led approaches in the field, methodologically, aesthetically and professionally (Hadley et al. 2022).
The trajectory of the development of disability arts in Australia is, of course, less linear and more complex than it appears in this brief summary. It is
difficult to track work by disabled artists in mainstream cultural institutions. The way we define, identify and disclose disability is culturally determined, and changes over time (Hadley 2021). Reasons to disclose may differ in physical, collaborative, project-based work in performing arts as compared to individual, written, sustained work in creative writing.
Still, our research repeatedly returns to questions of variability across film, theatre, dance, music, visual arts, creative writing and multiarts practice.
We still seek non-documentary film, television and media pre-2000. Access, community and performing arts organizations support film and media work, including recent initiatives such as Screenability at the Sydney Film Festival. However, analysis in Katie Ellis’s Disability Media Work (Ellis 2016), and Seeing Ourselves (Screen Australia 2016, 2023) identify specific barriers in Australia’s more commercialized film, television and media industries.
We still mark the role multiarts organizations like Tutti Arts, access arts organizations and companies like Janelle Colquhoun’s Salubrious Productions play in supporting musicians and bands. Adapted instruments can be expensive, classical music can emphasize virtuosity and the commercial music industry can be demanding in different ways. We query the impact of these factors in developing the profile and presence of disability music to date. Digital media and streaming platforms provide new outlets for independent artists and companies in these areas – and, yet, are potentially exploitative, if not aligned with the industry profile, employment and economic opportunity disability arts in Australia has consistently prioritized.
Ensemble, collective and, more recently, socially entrepreneurial models have played a critical role in supporting disabled performing and visual artists to create new aesthetics, methods and approaches in an industry that is yet to be fully inclusive. These collaborative and ‘sprouting’ models produce new generations of practitioners, who – through their own hard work, and that of those who have gone before them – are paving pathways into employment and economic opportunity, in and beyond disability arts. These artists are collaborating with mainstage companies with an interest in expanding their ways of working. What were historically one-off programmes, events and festivals are, in the best cases, becoming regular network relationships. Arts Access, Undercover Artist Festival, Queensland Theatre and Brisbane Festival, for instance, have been working together over a decade, expanding each other’s practice, to create pathways for artists. We see the outcomes of this change in, for example, increased programming of disability arts in the main Brisbane Festival programme (2024). The Brisbane Festival programme includes Oliver Hetherington Page’s The No Bang Theory, which received Undercover Artist Festival creative development support in 2020, then premiered at Undercover Festival in 2021, as well as Private View by Restless Dance Theatre. We also see outcomes of this change in the recognition for Hetherington Page, the performance work of Undercover Artist Festival Director Madeline Little and disability arts companies such as Crossroad Arts and Indelability Arts at Queensland’s Matilda Awards for Theatre (Matilda Awards n.d.).
These models, evident in a historical scan of The Evolution of Disability Arts in Australia, are creating access to the mainstream. However, it is a changed mainstream, with wider conceptions of aesthetic quality, audience engagement and accessibility. The artists, allies, organizations and industry do not just tolerate or accommodate the alternative modes of practice that disabled
artists bring to the landscape (Dupré 2012); they celebrate the change. What is equally clear in the scan of practice is that where policy, funding and production resources have been discontinued midstream – as with some of the early 2000s festivals or company trajectories – progress and momentum can stall (Austin et al. 2019). This is particularly evident if d/Deaf and disabled artists are left without training, skills and resources to continue without ally support (Missingham and Hadley 2022).
At present, Australia is currently investing considerable resources into sector consultation in support of the new Revive National Cultural Policy (Commonwealth of Australia 2023), along with consultation to support development in local areas – in Queensland, for example, consultation in support of the development of arts and disability strategy to align with the advancement of Queenslanders with disabilities, and First Nations Queenslanders, as key priorities in the Elevate 2042 Olympic Games Legacy Strategy. Our analysis of how collaborative, multiarts approaches and ‘sprouting’ approaches, have supported the development of artists, artsworkers and artsforms – and where there is uneven development in some artforms as compared to others – provides useful insight for government, policy-makers and funding agencies engaged in future strategy development. It provides background as to why, in consultations, disabled artists would call for consistent funding and mechanisms to better connect with each other and with a more accessible mainstream arts sector as part of the path to the development of a more inclusive industry in the future. Clearly, there is still work to do in unpacking, interpreting and proposing responses to differences in the development of different artforms over time. Our work to date is, however, already demonstrating the part an understanding of the past can play in informing the development of present and future strategies, models and funding programmes to support the success of disabled artists in Australia.
The research focusing on increasing representation of disability theatre in the AusStage database of live performance has been undertaken in collaboration with Senior Research Assistant Dr Morgan Batch, and Research Assistants Dr Donna McDonald and Dr Nimal Wijesiri. This has, since 2016, been supported by three Australian Research Council (ARC) Linkage, Infrastructure and Equipment grants. The Evolution of Disability Arts in Australia: Practices, Legacies, and Cultural Heritage project is funded by an Australian Research Council Special Research Initiative grant. The Chief Investigators Prof Bree Hadley (QUT), Prof Katie Ellis (Curtin), Associate Professor Janice Rieger (Griffith), Associate Professor Eddie Paterson (Melbourne) and Partner Investigators Dr Christen Cornell and Caitlin Vaughn (Creative Australia) and Caroline Bowditch and Joshua Pether (Arts Access Victoria) collaborate with a team of research assistants around Australia, including Annie Rolfe (QUT), HannahLeigh Mason (QUT), Dr Morgan Batch (QUT), Dr Jung Yoon (QUT), Rachael Missingham (QUT), Erin Scudder (Melbourne), Saadia Ahmed (Curtin) and Jordan Fyfe (Curtin), to conduct the archive and interview research, and create the online record of practice and other outputs of the project. Several collaborators – A/Prof Eddie Paterson, Prof Bree Hadley and Prof Katie Ellis – also benefit from previous collaboration, including on the Steering Committee of an ARC Linkage Project examining innovation in disability performance in
Australia A/Prof Paterson received funding for, Disability and the Performing Arts in Australia: The Last Avant Garde
This Research Project has received approval from the Queensland University of Technology Human Research Ethics Committee (QUT Ethics Approval Number 2021000382).
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Grehan, Helena and Eckersall, Peter (eds) (2013), ‘We’re People Who Do Shows’: Back to Back Theatre – Performance Politics Visibility, Aberystwyth: Performance Research Books.
Gurrumul (n.d.), ‘About’, http://www.gurrumul.com/about/. Accessed 24 May 2024.
Hadley, Bree (2014), Disability, Public Space Performance and Spectatorship: Unconscious Performers, London: Palgrave Macmillan.
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Wed, 05 Feb 2025 14:24:20
Hadley, Bree (2017), ‘Disability theatre in Australia: A survey and a sector ecology’, Research in Drama Education: The Journal of Applied Theatre and Performance, 22:3, pp. 305–24.
Hadley, Bree (2021), ‘What’s in a name: The politics of labelling in disability performance’, in S. Jestrovic, R. Shirin, M. Gluhovic and M. Saward (eds), The Oxford Handbook of Politics and Performance, Oxford: Oxford University Press, pp. 531–43.
Hadley, Bree (2022), ‘A “Universal Design” for audiences with disabilities?’, in M. Reason, L. C. K. Johanson and B. Ben Walmsley (eds), Routledge Companion to Audiences and the Performing Arts, Abingdon: Routledge, pp. 177–89.
Hadley, Bree, Goggin, Gerard, Kuppers, Petra, Conroy, Colette, Shand, Meagan, McDonald, Donna, Paten, Martin, Horton, Norm, Moynigan, Sarah, Pardo, Veronica, Bowditch, Caroline, Collett, Morwenna, Comerford, Kerry, Doyle Dadaa, David, Swell, Pat, Crystal, Clark and Stuart, Peter (2019), ‘The NDIS and disability arts in Australia: Opportunities and challenges’, Australasian Drama Studies, 74, pp. 9–38.
Hadley, Bree, Paterson, Eddie and Rieger, Janice (2024), ‘Reinhabiting, reimagining, and recreating ableist spaces: Embodied criticality in art’, in K. Ellis and M. Kend (eds), Routledge Handbook Critical Disability Studies, London and New York: Routledge, pp. 48–58.
Hadley, Bree, Paterson, Eddie, Little, Madeleine and Duncan, Kath (2023), ‘Disability performance travels in Australia: The reality under the rhetoric’, in C. Czymoch, K. Maguire-Rossier and Y. Schmidt (eds), How Does Disability Performance Travel? Access, Art, and Internationalization , London and New York: Routledge, pp. 62–77.
Hadley, Bree and McDonald, Donna (2019), ‘Introduction: Disability arts, culture, and media studies: Mapping a maturing field’, in B. Hadley and D. McDonald (eds), The Routledge Handbook of Disability Arts, Culture, and Media, London and New York: Routledge, pp. 1–18.
Hadley, Bree, Paterson, Eddie and Little, Madeleine (2022), ‘Quick trust and slow time: Relational innovations in disability performing arts practice’, International Journal of Disability and Social Justice, 2:1, pp. 74–94.
Indelability Arts (IMA) (2020), ‘Wilbur the Optical Whale’, https://www.indelabilityarts.com/wilbur-the-optical-whale. Accessed 24 May 2024.
Indelability Arts (IMA) (2021), ‘The no bang theory’, https://www.indelabilityarts.com/the-no-bang-theory. Accessed 24 May 2024.
Jodee Mundy Collaborations (2016), Imagined Touch, installation, https://jodeemundy.com/projects/imagined-touch-installation/. Accessed 24 May 2024.
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Meekosha, Helen and Shuttleworth, Russell (2009), ‘What’s so “critical” about critical disability studies?’, Australian Journal of Human Rights, 15:1, pp. 47–75.
Missingham, Racheal and Hadley, Bree (2022), ‘Oppression and allyship in Australia’s deaf arts’, Australasian Drama Studies, 80, pp. 304–32.
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Oliver, Michael (2013), ‘The social model of disability: 30 years on’, Disability and Society, 28:7, pp. 1024–26.
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Tutti Arts (n.d.a), ‘History’, https://tutti.org.au/about/history/. Accessed 24 May 2024.
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Hadley, Bree and Goggin, Gerard (2019), ‘The NDIS and disability arts in Australia: Opportunities and challenges’, Australasian Drama Studies, 74, pp. 9–38.
Restless Dance Theatre (2016), ‘Intimate space: news’, https://restlessdance. org/news/intimate-space/. Accessed 24 May 2024.
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Hadley, Bree (2024), ‘Generative, reductive or exploitative? How change in policy, funding and production practice impacts disciplinary and transdisciplinary practice in disability arts in Australia’, Journal of Arts & Communities, Special Issue: ‘Transdisciplinarity in Disability, Art and Design’, 15:2, pp. 249–64, https://doi.org/10.1386/jaac_00059_1
Bree Hadley is editor of The Routledge Handbook of Disability Arts Culture and Media (2019) and author of Theatre, Social Media, and Meaning Making (2017) and Disability, Public Space Performance & Spectatorship (2014). Her writings on representation and access in the arts have appeared in books, journals, media and online platforms such as The Australian, ArtsHub and Australian Stage Online. She has received Australian Research Council funding for her research, including The Evolution of Disability Arts in Australia project working to create an online archive of disability arts in Australia, and the UNESCO Memory of the World Register listed AusStage database of live performance in Australia. Her practice-led research includes the 2020 Museums & Gallery Association Award and 2021 International Association for Universal Design Gold Awardwinning Vis-Ability exhibition, and the performance text The Excentric Fixations
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Project published in At the Intersection of Disability and Drama: A Critical Anthology of New Plays (McFarlane, 2021).
Contact: Queensland University of Technology, Z9-303, 7 Musk Avenue, Kelvin Grove Campus, Kelvin Grove, QLD 4059, Australia. E-mail: bree.hadley@qut.edu.au
https://orcid.org/0000-0002-1923-6481
Bree Hadley has asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work in the format that was submitted to Intellect Ltd.
Delivered by Intellect to: Amanda Cachia (33356006) IP: 73.77.110.215
Wed, 05 Feb 2025 14:24:20