Putting one foot in front of the other is effortless for many of us, an act often taken for granted. For those with physical, cognitive, or visual impairments, walking can be a significant challenge, a complex negotiation of spaces not designed for their needs. Artists Jason DaSilva, Carmen Papalia, and Sunaura Taylor explore the aesthetic and conceptual implications of walking with a disability, compelling us to rethink the presumed simplicity of ambulation and prompting reflection on the lack of support and resources for those with disabilities. This analysis delves into how “disability aesthetics” redefines beauty and function, serving as a critical lens for evaluating societal inclusivity. Disabled artists revolutionize perceptions of disability by offering authentic representation, advocating for visibility, challenging stereotypes, and fostering community solidarity.1 Their work opens conversations about societal norms, encourages viewers to question assumptions, and presents diverse interpretations of disability. These artists emphasize the importance of empathy, understanding, and acceptance, which are crucial for social advancement and knowledge generation.2
Jason DaSilva’s 2013 film, When I Walk (Figure 1), and its 2019 sequel, When We Walk, follow DaSilva over the years following his diagnosis of primary progressive multiple sclerosis (where the immune system attacks the nervous system) and record his journey (Figure 2) as he faces and grieves over the physical and emotional realities while living with this condition, marrying (Figure 3) and becoming a parent, then managing child-rearing as he develops quadriplegia. These films offer intimate views into the life of a disabled individual, focusing on the loss of mobility (Figure 4) and the struggle for independence while highlighting the emotional and systemic barriers faced by disabled individuals. Despite these difficulties, DaSilva refuses to be defined by the limitations his disability presents (Figure 5) and uses his films to showcase his resilience and determination. When I Walk unfolds a narrative in structured progression, offering a poignant and moving portrayal of one man’s experience of radical corporeal change. It serves as a testament to the human spirit and the enduring resilience of the body and mind. DaSilva remarks in the film, “I walk around like a normal person, but inside, my body is at war.”
In When We Walk (Figure 6), DaSilva offers a deeply personal look at the burdens faced by disabled parents and the sacrifices they make to care for their children (Figure 7). He wants to keep the cameras rolling no matter what. The film chronicles his wife’s departure from New York with their son and his attempts to co-parent between the states of New York, where he resides, and Texas, where mother and son live. Despite the geographical separation and the challenges it brings, DaSilva’s (Figure 8) drive and determination prevail.3 The film also highlights the state-to-state inequities in Medicaid funding and the impact on disabled individuals’ quality of life. In both films, fantasy scenes rendered via animation, such as the filmmaker-father flying free alongside his son, offer a psychological and emotional reprieve from the decreed and legislated way of life DaSilva logs.
In addition to his films, DaSilva has created several documentaries, including The Disability Trap of 2018 and Predicting My MS of 2022. These films continue his mission to detail the experiences of those with disabilities, using media and technology to raise awareness and inspire activism. His AXS Lab project, which maps accessible urban pathways, markedly contributes to disability advocacy, helping disabled individuals navigate terrain more effectively.
Like DaSilva, Carmen Papalia is another influential figure in disability advocacy, albeit with a distinct approach. Through their pioneering projects, both artists interrogate and expand our comprehension of mobility, pushing for a world more involving for people routinely facing obstacles. Sightlessness is Papalia’s main topic in works that solely represent himself or aspects of himself. While DaSilva utilizes film and digital tools to illuminate the physical and societal barriers faced by those with disabilities, Papalia redefines access concepts within the artistic sphere in his social responsibility pieces. He is the creator of two ongoing projects: Open Access, which started in 2015, and Mobility Device, inaugurated the same year. Both projects dispute conventional wisdom about accessibility and mobility.4 Through his work, Papalia seeks to interrupt the status quo and complicate spaces by championing people to reassess their ideas about disability and accessibility.
Open Access (Figure 9) is a multifaceted project that serves as a manifesto, agreement, and advocacy platform.5 This project provides a universal support framework for various issues and experiences fitting under the rubric of disability, offering an expanded model that counters the prevailing impression of disabled people partaking in a singular state of participation.6 It departs from the regulatory paradigm usually employed by public institutions and promotes agency and power across social, cultural, and political boundaries.7 Several galleries and museums, including the Tate Liverpool, the Harvard Art Museums, and the Brooklyn Museum, have exhibited Open Access.
Mobility Device (Figure 10) is a collaborative performance where Papalia replaces his detection cane with alternative systems to investigate unfamiliar sites or public spaces. He described his ambivalence about his cane, which is the originating point for this work:
I started to use a white cane—a symbol that I felt good and bad about. On one hand, it was a tool that promoted my access and mobility. It showed me things and made my map a whole lot bigger. On the other hand, it institutionalized me. It was a symbol that was connected to an institution that wanted me to be a certain kind of blind person—the kind with huge sunglasses. The kind that was either a piano tuner or a masseuse. The kind that walks a certain way on a predetermined route, and that talks a certain way about his blindness. The kind that you never saw but which you knew existed.8
One iteration of Mobility Device occurred in 2019 at the High Line in New York City, where Papalia collaborated with the Hungry Marching Band, an 18-person group (Figure 11).9 Using the band’s audio for navigational guidance, Papalia ambulates and proceeds based on the sound steerage he receives. Papalia’s work emphasizes relational engagement and the creative potential of auditory experiences, denying our conventional reliance on visual cues and fostering deeper communal connections through shared sensory occurrences. He wants to remove the historical assistive device as a symbol of visual disability and impairment, changing it into a relational situation of involvement, connection, and social interaction based on collaboration and care, all reliant on sound. “The arrangement proposes the possibility of user-generated, creative, process-based systems of access while representing a noninstitutional—and non-institutionalizing—solution for the problem of the white cane.”10 Further, Papalia wants to give the disabled person agency over their movement experience, which he felt in his case had been diminished by the cane. Using the music in a group setting allows others to understand how a non-visual person navigates and negotiates.
Sunaura Taylor interweaves themes of disability and animal rights informed by her autobiography. Born with arthrogryposis—a neuromuscular condition caused by exposure to trichloroethylene-contaminated water—Taylor faces significant physical challenges.11 This condition, leading to joint contractures and muscle weaknesses, necessitates the use of alternative methods for painting: Taylor adeptly uses her teeth and toes to hold a paintbrush. Her disability, a direct consequence of environmental negligence, fuels her artistic exploration of exploitation and the interconnectedness of human and non-human suffering. In her art, she contends with the irreversible impact of ecological neglect on human health and addresses how this irresponsibility turns off bodies and ecosystems. For example, works such as Self-Portrait Marching with Chickens of 2008 (Figure 12) oppose dominant narratives of disability as sensational, horrifying, tragic, and needing a cure. In this painting, the artist images herself walking at a tilt, a result of the involuntary muscle tightening from her disorder, which she visually parallels to the stooped gait of the chickens seen in the painting. For Taylor, disability is a political issue, and she connects the oppression of disabled people and non-human animals, as in a series of paintings of animals in factory farms, in which she memorializes animals often seen as mere products. Her work intersects disability studies, medical interventions, sideshow history, and animality, revealing the interconnections between these themes. Through her work, Taylor not only refutes societal views on disability but also highlights the broader implications of expectations about movement and positioning.12
In the documentary film Examined Life of 2008 (88 min.) (Figure 13), directed by her sister Astra Taylor, Sunaura Taylor drives her motorized wheelchair and the post-structuralist philosopher Judith Butler walks beside her through the streets of San Francisco, discussing the construction of spaces and bodies and the characterization of some bodies as “normal” and others as disabled. Taylor answers Butler’s question about how she takes walks and takes strolls:
Well, I think I always go for a walk, probably every day I go for a walk, and I always tell people I’m going for walks—I use that word even though I can’t physically walk. I mean, to me, I think the experience of going for a walk is probably very similar to anybody else’s: it’s a clearing of the mind, it’s enjoying whatever I’m walking past. And my body is very involved even though I’m physically not walking. I have my own ways in which I engage my body, my balancing. But yeah, I use that term: walking. And most of the disabled people that I know use that term also.13
Taylor’s walk with Butler is apposite. Like DaSilva and Papalia, her project deals with the body and its acculturation in complex layers. Butler has argued that one putatively “biological” identity marker, gender, is a cultural performance shaped by social rituals and institutional power. The act of “doing”—and how that doing is culturally perceptible and acknowledged (or disavowed) —shapes how society ascribes masculinity or femininity to bodies, subject to societal normalization. Like gender, “ability” is not a biological entity but a cultural construction. Taylor’s reflections on her embodied experiences highlight how such constructions shape and transform how we use our bodies. Taylor’s graphic work and her collaboration with Butler in these examples from her oeuvre delve into disability, animal rights, and social exploitation. They call into question societal constructions of the body and identity, providing a powerful critique of the normalization of ableism and exposing the interconnections between different forms of oppression.
These “walking” works offer valuable insights into the experiences and perspectives of disabled artists. By exploring everyday walking activities and their hassles or vexations for individuals with disabilities, these artists reveal how simple tasks can morph into intricate and demanding experiences. Embracing disability as a unique aspect of their identities, these artists see, hear, contemplate, and articulate approaches to making the art world more inclusive in representing and accommodating bodies. These artists disaffirm expectations through their art, emphasizing the worth of openness and accessibility. Their works also highlight walking as a form of self-expression and liberation for disabled individuals. Often seen as a simple everyday activity, walking takes on a new meaning in the context of disability, becoming a symbol of resilience, agency, and self-determination. DaSilva, Papalia, and Taylor remind us that disability is not just a medical condition but a complex social and cultural construct that profoundly impacts individuals’ lives.14
By presenting walking through the lens of disability, these artists ameliorate a routine undertaking into a profound expression of resilience and autonomy, motivating us to confront our preconceptions, reassess societal norms, and envision a society that genuinely accommodates and celebrates all its members. The groundbreaking work of artists like Jason DaSilva, Carmen Papalia, and Sunaura Taylor opens consequential dialogues around disability, accessibility, and the multifaceted experiences of navigating the world with bodily impairments. Their art not only dares us to question how societal structures and policies impact the lives of those with disabilities but also raises valid questions about the intersection of disability with other marginalized identities, the role of art in influencing policy and attitudes, and how the art world can better amplify the voices and experiences of disabled artists. The ongoing dialogue sparked by these artists serves as a decisive reminder of the transformative potential of disability aesthetics—not only in reshaping our awareness but in catalyzing tangible, lasting change. The path forward demands a collective commitment to listening, learning, and acting, guided by the visionary leadership of artists like DaSilva, Papalia, and Taylor, who invite us to imagine a more just and inclusive world. We must remember the urgency of advocating for accessible locations to achieve walking with relative ease and comfort.
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Endnotes
- Sue Cheesman, “Ten Years of Touch Compass Dance Company’s integrated education programme under the spotlight: A reflective essay,” The Routledge Handbook of Disability Arts, Culture, and Media, edited by Bree Hadley and Donna McDonald (New York: NY: Routledge, 2019): 114.
- Eliza Chandler, Megan Johnson, Becky Gold, Carla Rice, and Alex Bulmer, “Cripistemologies in the City: ‘Walking-Together’ as Sense-Making,” Journal of Public Pedagogies, guest edited by WalkingLab, no. 4 (2019), http://jpp.vu.edu.au/.
- Jason DaSilva, “Opinion: The Disability Trap,” The New York Times (July 24, 2018), https://www.nytimes.com/2018/07/24/opinion/disability-trap-state-medicaid.html.
- “A Temporary, Collectively-Held Space: A conversation between Amanda Cachia and guest-editor Carmen Papalia,” BlackFlash, vol. 38, no. 2 (2021): 19.
- For information about the many forms of Open Access, see Carmen Papalia, “Open Access,” Carmen Papalia, August 21, 2015, https://carmenpapalia.com/2015/08/21/open-access/ and Cachia and Papalia, BlackFlash, 2021.
- Catalin Brylla and Helen Hughes, “Introduction: The Bricolage of Documentary and Disability,” Documentary and Disability, edited by Catalin Brylla and Helen Hughes (New York: Palgrave MacMillan, 2017): 5.
- Carmen Papalia, “An Accessibility Manifesto for the Arts,” CanadianArt (January 2, 2018), https://canadianart.ca/features/access-revived/.
- Carmen Papalia, “A new model for access in the museum,” Disability Studies Quarterly, 33(3) (2013), http://dsq-sds.org/article/view/3757/3280.
- High Line Art, Mobility Device: Carmen Papalia, August 28, 2019, https://fhl-website.s3.amazonaws.com/content/uploads/2019/08/28132450/HL_PressRelease_CarmenPapalia_2019.pdf. (There is a short interview video available connected to this performance, available at https://www.youtube.com/watch?v=UINvEeRM-Kw.)
- Carmen Papalia, “You Can Do It With Your Eyes Closed,” art21 magazine (September/October 2014), October 7, 2014, https://magazine.art21.org/2014/10/07/you-can-do-it-with-your-eyes-closed/.
- Astra Taylor and Sunaura Taylor, “Military Waste in Our Drinking Water,” AlterNet, August 4, 2006, https://www.alternet.org/2006/08/military_waste_in_our_drinking_water.
- Sunaura Taylor, Beasts of Burden: Animal and Disability Liberation (New York: The New Press, 2017): 38-9.
- Butler and Taylor, Examined Life, 186.
- As Gretchen E. Henderson notably remarked, “Disability metaphors sometimes make abstract ideology into an embodied form that must carry symbolic value, obscuring the fact that disabled bodies live complex lives and carry rich and varied knowledges that can restructure not only culture but also narrative.” (cf. Gretchen E. Henderson, “Sharing and shaping space: Notes towards an aesthetic ecology,” Interdisciplinary approaches to disability: Looking Towards the Future, volume 2, edited by Katie Ellis, Rosemarie Garland-Thomson, Mike Kent, and Rachel Robertson (New York: Routledge, 2019): 67.
Anne Swartz