Taut Threads, Spanning Ambivalences: Lessons from Disability Arts Practitioners About How to Make Sense of Arts-Based Social Change
Ryan Evans
Introduction: A Story About the Disability Arts
On an overcast mid-spring morning, I visited an inclusive music practice at a 17th-century church, the steepled brick variety that fleck the London cityscape. Sitting in a wide circle, each of the 50 or so musicians was playing an instrument, our cumulative sound reverberating wildly off the brick walls and vaulted ceiling. The session facilitator made these instruments for non-standard ways of making music: modified guitars, stringed boxes, pulley-operated noisemakers. These musical interventions meant that everyone could join in, regardless of disability. We played a few jams in the hour-long session, each beginning the same way—with silence. “Silence” in the session was holistic: a stillness of being. The facilitator instructed us to quiet our voices, our instruments, and our bodies as we all looked to him for the beginning cue. Those who presented what I perceived as involuntary physicalizations, perhaps due to neurological impairments, were even instructed to silence this part of themselves. When accomplished, this self-silencing was a signifier of collective connection: we were all silent together, ready for music-making. Channeled through the facilitator’s powerful charisma, our sound—as a representation of our very beings—melded into singular cacophony. I could barely make out my own sounds, much less anyone else’s.
I attended this session because I thought I may want to join the ensemble, but I did not end up a regular musician with them. Frankly, for months after this session, I referred to it as “bad practice”—which is a wholly inadequate summary of the ensemble’s long and complex history.
In actuality, the session held at once a lot of “good” and “bad.” For example, the adaptation of instruments—often customized for particular players—was an impressive response to a common barrier to musical participation. In contrast, the dictatorial facilitation approach, to the extent of policing involuntary behaviors, aligned with negative ideas about disability as a personal defect needing eradication. Similarly, the sonic intensity of the session—paired with such a unifying music-making approach—overshadowed most opportunities for individual creative expression, thereby aligning with a key critique of the social model of disability (that is, the social model can erase important differences between how people experience disability). Nevertheless, looking around the session I saw many musicians clearly enjoying themselves. Considering these nuances, this session came to represent for me just one outcropping in the figurative terrain of the disability arts—a valley, perhaps, ringed by ranges of incongruent ideologies and aesthetics, each rising from varied viewpoints on art and disability.
In this essay, I unpack the idea of “good” and “bad” practice in the disability arts by focusing on two disability arts ensembles within the frame of arts-based social change. The bond between art and social change owes much of its ideological heritage to the community art movement, with Owen Kelly noting in his seminal Community, Art, and the State that community art should “be an active force for change.” [1] Originating in the 1960s, proponents of the community art movement seek to free art from the power systems of the art world, which often manifest in galleries and museums, theaters and concert halls. [2] Community artists have been successful in this respect. Today, art is in hospitals, community centers, care homes, prisons, parks, the street—art is “in community.” Similarly, art in these settings is not only made by professional artists—it is made by anyone, though often with guidance or encouragement from professional artists. [3] In other words, the art world’s spatial and relational boundaries have become strikingly porous in the past half-century or so.
Art that exists outside traditional art spaces, made by people who don’t call themselves artists, often prompts questions about the purposes of art: Why paint a mural on that wall? Why bring theater-makers into care homes? As community artists have stretched the art world’s boundaries, their work has been increasingly instrumentalized due to questions like these. [4][5] The breadth of this instrumentalization is impressive. For example, the arts have been used to improve local economies, attain academic goals, promote personal health, build community cohesion, foster social-emotional development, enhance government decision-making processes, and activate constructed and natural environments. [6][7][8][9][10][11][12] Such instrumentalization has spurred conceptual growth and methodological creativity among researchers and administrators seeking to measure the impact of the arts. [13][14][15][16][17] [18][19][20][21][22] However, many of these researchers and administrators seem preoccupied with technical rather than ontological questions. As Susan Galloway states: “Arguably the main issue for advancing our understanding of the effects of arts interventions is ontological; it is not research methods but the most effective ‘orientation’ or ‘logic of enquiry.’” [23] Kelly offers a similar observation of the community art movement, noting that scholarship about community art tends “to concentrate on the mechanical techniques of the various art forms” rather than on the “thought, planning, style, and aesthetic” that serve as guideposts for the movement. [24]
These two inquiries from the research world and the art world—How do we make sense of knowledge? and How do we make sense of art?—together act as the dual fulcrum of this essay. As evidenced by extensive research and commentary about the instrumentalization of art, social change is often a presupposition of art that occurs in “non-art” settings or is made by “non-artists.” However, how this change occurs is still poorly understood—perhaps, as Kelly and Galloway suggest, because there is an ontological mismatch between socially engaged art projects and how the effect of such projects is conceptualized and measured.
Ultimately, I argue that the disability arts offer great potential for understanding the mechanisms by which arts-based social change comes about. To do so I first provide a brief overview of the disability arts and then describe my role as artist-researcher with two disability arts ensembles—Ambient Jam in London and Interact in Minnesota. Then I present my observations about how these two ensembles foster social change at the personal, cultural, and structural levels. Finally, I end this essay by commenting on the ideal ontological position for evaluative efforts intending to measure the social effect of the arts.
The Disability Arts: A Brief Historical and Conceptual Overview
In the United States and the United Kingdom, disability care from the early to mid-1900s largely amounted to the institutionalization of disabled persons. [25] Due to activism efforts of disabled persons and their allies, in the 1960s disability care began to be deinstitutionalized, with the field gradually transitioning to family- and community-based care models. [26][27] The deinstitutionalization movement signified shifts in how disabled persons and disability professionals thought about disability. [28][29] Prominently, it became more common during this time to think about disability not as a personal defect that must be fixed, which is emblematic of the medical model of disability; rather, disability was re-conceptualized as the result of prevailing attitudes toward impairment, which is the basis for the social model of disability. That being said, the medicalized understanding of disability is still in many ways dominant today. [30]
The distinction between impairment and disability remains a key feature of the social model of disability: “In our view, it is society which disables … impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.” [31] What’s more, scholars in recent decades have begun to outline the affirmative model of disability, which builds on the disability pride movement in elevating positive aspects of disability. [32] The affirmative model promotes “essentially a non-tragic view of disability and impairment, which encompasses positive social identities, both individual and collective, for disabled people.” [33] The medical, social, and affirmative models represent three common understandings of disability, but there are many more—with some scholars identifying up to nine sub-models of the social model alone. [34]
These shifts in the understanding of disability coincided with shifts in the understanding of art. [35][36][37] Two important tenets of the community art movement—collectivism and social change—epitomize these changes. For example, Kelly asserts that community artists should be “concerned with collective creativity” and that they should want their art “to be an active force for change” within their communities. [38] These tenets, according to Kate Crehan, stand in opposition to the art world’s predominant understanding of “good art,” which suggests that worthwhile art is the product of lone creative geniuses who “follow no dictates other than those of their own genius.” [39] Crehan supports her claim with an anthropological analysis of the art world, exemplified by the following quote from an artist featured in her book:
Nobody needs it [my art]. The work is a huge individualistic gesture that is entirely decided by me. … One of the greatest contributions of modern art is the notion of individualism. [40]
Further, Crehan critiques the gatekeeping of “good art” by arts funders and institutions. She describes an instance when an arts funder derides a mural made by community artists and local residents as “so poorly conceived; a kind of invented, somewhat false buoyancy redolent of the hippy era (sunsets, skies, birds wheeling, etc.).” [41] For community artists, however, the tastes of their “non-artist” collaborators must be honored, regardless of what the curatoriat might think of them. In this case, those tastes resulted in images of sunsets, skies, and birds—which this funder disparaged as “bad art.” For the community artists, however, it was precisely the inclusion of these images—stemming from local residents’ active participation in the project—that represented the mural’s collectivism as well as increased its likelihood of producing positive social change.
François Matarasso offers the term “socially radical” to help explain how a public mural can spur positive changes in people’s lives; he posits that the impact of such artwork relies on how socially radical it is in process and presentation. [42] As Matarasso uses it, the term “socially radical” refers to including “non-artists” in the production of art and displaying the resulting work in “non-art” settings, which according to Matarasso is socially radical because it subverts longstanding ideas about who makes worthwhile art and where such art is experienced.
Twenty years after the mural’s creation, Crehan talked with some local residents who participated in making it. One of these residents said:
All of the little kids … they were so involved in it and it was a community brought together for that. … You think of all those sorts of things and the people that were there and died since. But they were there, there’s a part of them still going on because everybody was involved in the mural. [43]
Similar perceptions were shared by a number of residents that Crehan talked to—that the mural represented a “bringing together” of their community during its creation and after it was completed. These testimonies suggest that some kind of positive change occurred as a result of the mural and its making, though Crehan unfortunately does not describe the specifics of this change.
For the disability arts, I suggest that the question of social change relies on the degree to which an arts practice subverts the “carer-cared for” dynamic—that is, the assumption that disabled persons need help from non-disabled persons. [44] Throughout this essay, I use this idea—the “carer-cared for” dynamic—as an analytical guidepost to theorize the social effect of the disability arts. That being said, there are numerous complexities to determining whether and how an arts practice subverts this dynamic. For example, Saad Nagi was one of the first scholars to suggest that different cultural, social, legal, political, and economic contexts result in different experiences of disability. [45] In other words, someone who is disabled in one context may not be disabled in another. These contextual considerations, as I showcase throughout this essay, are significant when attempting to determine to what extent a disability arts practice subverts the “carer-cared for” dynamic.
In addition to the considerations noted above (cultural, social, etc.), determining the social effect of the disability arts necessitates a consideration of the artistic—which brings with it further complexities when coupled with disability. Michael Davidson observes:
Disability arts foregrounds the extent to which the body becomes thinkable and its totality can no longer be taken for granted, when the social meanings attached to sensory and cognitive values cannot be assumed. [46]
In other words, disability arts practitioners often stretch the aesthetic understandings of whatever kind of art they practice, thereby challenging the taken-for-grantedness of the art form in question. As a result, disabled artists are often relegated to the margins of the art world, seen in the categorization of their art as “outsider.” [47][48]
Further, during the deinstitutionalization movement, the disability arts paradoxically represented a social integration strategy for those leaving institutions as well as a signifier of their continued status as outsiders—with the “outsider art” label serving as a shorthand aesthetic explanation of their output. [49][50][51] This outsider label still permeates many disability arts practices today, with “social integration” often noted as a primary outcome in recent scholarship about the disability arts. [52][53][54][55] This continued emphasis on social integration speaks to the “entangled patterns and geographies of exclusionary and inclusionary situations” experienced by disabled persons as they navigate the cultural, social, legal, political, and economic boundaries of disability. [56] Put another way, the asylum is not just a physical place. It is a set of policies, practices, and discourses that continue to affect the daily lives of disabled persons—and disabled artists—despite the deinstitutionalization of disability care and the growing recognition of the disability arts.
Disability arts practitioners often address, challenge, and play with this “contemporary asylum” in their work. [57] To do so, many employ something akin to the Ethic of Accommodation that Petra Kuppers notes—“making room for difference possible, letting go of preconceived notions of perfectibility, and negotiating complex sets of needs.” [58] The details of such accommodation often indicate to what degree a practice subverts the “carer-cared for” dynamic. If disabled and non-disabled artists mutually rely on each other to make and present art—and in doing so accommodate each other’s needs—there exists a relationship that opposes the assumption that disabled persons need help from non-disabled persons. During my fieldwork for this essay, a non-disabled artist addressed the complexities that arise when disabled and non-disabled practitioners rely on each other like this, highlighting what it means for non-disabled artists in particular:
Navigating our own dependency and others’ dependency is hard work. Dependency in terms of ‘who is facilitating whom’ is a shifting dynamic in the space. In this way, we find out that [a disabled artist] can be stronger than you and potentially capable of, in the most unseen ways, facilitating you on some level—and vice versa. [59]
Neil Thompson’s personal-cultural-structural model of discrimination helps to further unpack these complexities. [60] Briefly, this model defines the personal level as “one’s thoughts, feelings and actions,” the cultural level as “the ‘taken-for-grantedness’ of everyday life,” and the structural level as “the macro-level influences and constraints of the various social, political and economic aspects of the contemporary social order.” [61] In this essay, I focus on art-making among disability arts practitioners to examine how the disability arts can subvert the “carer-cared for” dynamic at the personal level. Conversely, I focus on art-presenting among disability arts practitioners to explore how the disability arts can subvert the “carer-cared for” dynamic at the cultural and structural levels. (By “art-making,” I mean the active participation of disabled and sometimes non-disabled persons in creative expression, regardless of their intention to showcase or present their artwork. By “art-presenting,” I mean the presentation of artwork by disabled and sometimes non-disabled practitioners to audiences who were not involved in the art-making.)
In Figure 1, I offer a framework that organizes the conceptual characteristics I have presented here. The framework provides a fairly open definition of the disability arts, and highlights key aspects of disability and art that serve to “locate” a practice within this field. These aspects include the disability model(s) that underpin an arts practice and the ways that the practice’s art-making and art-presenting subvert the “carer-cared for” dynamic. Lastly, this framework suggests that the “carer-cared for” dynamic is always localized considering the cultural, social, legal, political, economic, and artistic contexts in which an arts practice takes place.
For disability arts practitioners, my hope is that this framework is useful for exploring the following questions: In your context, what does it mean to be disabled—from a cultural, social, legal, political, economic, and artistic standpoint? How does your practice address, challenge, and play with this contextualized understanding of disability?
Artistic-Ethnographic Method: Aesthetic Relationships
The fairly recent relational turn in the arts is well-documented, with Arnd Schneider and Christopher Wright commenting that “artists are increasingly using various kinds of social encounters as ‘the work.’” [62][63][64][65][66] Nicolas Bourriaud’s Relational Aesthetics has served as the theoretical grounding for many socially engaged artists. In this seminal text, Bourriaud offers a vision of the artist as a conduit for reflection, growth, and action: “The role of artworks is no longer to form imaginary and utopian realities, but to actually be ways of living and models of action.” [67]
Building on the history of socially engaged art, I suggest that the disability arts rely on “aesthetic relationships” to effect social change. In using this term, I flip Bourriaud’s notion of relational aesthetics and, importantly, prioritize relationships over aesthetics. This prioritization responds to critiques that some artists, while motivated by ideas akin to relational aesthetics, do not meaningfully connect with the individuals or communities with whom they make art. [68][69] Throughout this essay, I use the idea of aesthetic relationships to examine mutual artistic relationships between disabled and non-disabled persons. Treating such relationships as a particular category of social phenomena is useful for determining to what degree a disability arts practice subverts the “carer-cared for” dynamic.
When I began working with the two disability arts practices featured in this essay—Ambient Jam and Interact—I entered into two complex networks of aesthetic relationships. Ambient Jam is a London-based movement and sound improvisation ensemble whose twice-weekly improvisations are rooted in theater, dance, and music. They rarely present to the public. Interact is a Minnesota-based arts nonprofit well known for their devised theater productions that are grounded in physical theater techniques. Interact’s theater ensemble meets three times each week, developing and presenting a feature-length theater piece every year to large audiences.
Both practices have maintained ensembles for upwards of 20 years, and many current ensemble members—disabled and non-disabled alike—have practiced together for more than a decade. With Ambient Jam, I served primarily as an artist and secondarily as a researcher. For about six months I danced and made music with the ensemble during weekly improvisations. I also produced a few pieces of ethnography about Ambient Jam. With Interact, on the other hand, I served primarily as a researcher and secondarily as an artist. I never “made art” with Interact in that I did not directly contribute to the ensemble’s theater productions as an artist—but my arts training and background greatly influenced how I approached my work with the ensemble. Over three years, I created a theory of change for Interact’s work and conducted evaluations of the ensemble’s social effect.
The nature of my role with these two ensembles provided me with complementary views of how disability arts practitioners instrumentalize aesthetic relationships to subvert the “carer-cared for” dynamic at the personal, cultural, and structural levels. [70] In particular, my experience with Ambient Jam taught me how art-making can subvert the “carer-cared for” dynamic at the personal level. This subversion is mainly seen in the person-to-person interactions between disabled and non-disabled ensemble members during sessions and in the relationships that grow from these interactions over time. In contrast, my experience with Interact taught me how art-presenting can subvert the “carer-cared for” dynamic at the cultural and structural levels. This subversion is mainly seen in how Interact presents their work, interfaces with disability care professionals, and approaches their relationships with public agencies.
Further, the sites of my fieldwork were functionally disparate. [71] With Ambient Jam I had access to an artistic site—where disability art is made by disabled and non-disabled artists. With Interact I had access to an administrative site—where such art-making is coordinated and organized by arts administrators in relationship with audiences, donors, partners, funders, and public agencies. And so it was precisely my dual role of artist-researcher that enabled me to learn how these disability arts practitioners subvert the “carer-cared for” dynamic at the personal, cultural, and structural levels.
Playing with Systems: Subverting the “Carer-Cared for” Dynamic at the Structural Level
Legally speaking, Interact is an adult day center. Regardless of their artistic focus the ensemble must meet the legal requirements for operating as such—monitoring artists’ health, administering their medication, providing meals and snacks, leading artists in physical exercise, coordinating with their families and social workers, providing opportunities for personal and social development, and more. [72] In response to this aspect of Interact’s work—which is closely aligned with prevailing ideas of “disability care”—the ensemble is forthright about their artistic focus:
We don’t do ‘arts activities’ with people with disabilities. … We’re an arts organization and we make professional quality art. [73]
In positioning themselves as artists so pointedly, Interact acknowledges—and distances themselves from—the disability systems that inform their practice. Notably, in 2015 the State of Minnesota approved its Olmstead Plan (referring to the 1999 Supreme Court case of the same name). Lifting language from the 1990 Americans with Disabilities Act (ADA), Minnesota’s Olmstead Plan seeks for “individuals with disabilities to interact with non-disabled persons to the fullest extent possible.” [74] In response to the historical institutionalization of disabled persons, the plan strives for the conceptual opposite—social integration to the fullest extent possible. In doing so, however, the plan arguably promotes ableist ideas about disability, namely that the best way to deal with disability is for it to be normalized, subsumed by the non-disabled mainstream, as Kuppers observes:
One way of telling the story of the ADA (the Americans with Disabilities Act) and other policies focuses on how their imagination is grounded in a principle of assimilation, post-adaptation: when all buildings have ramps, when all work spaces have safe rooms, when all elevators talk, disability will disappear. [75]
Like Kuppers, Interact doesn’t want their disabilities to be erased. In fact, they assert that they offer “the enriching lens of disability” precisely because their art stems from their disabled realities. [76] Seen in this light, the Olmstead Plan presents a paradox—it seeks to minimize disability, potentially to the point of erasure, while also attempting to honor the personhoods of disabled Minnesotans, from which disability cannot be separated.
From a financial standpoint, Interact’s legal status as an adult day center—paired with their self-identification as a professional arts ensemble—further complexifies the ensemble’s relationship with Minnesota’s disability systems. In Figure 2, I present a flow chart of Interact’s relationship with public funding sources intended for the care of disabled persons. It depicts how Interact accesses this funding to create and monetize their art, and then uses the resulting income to pay their disabled artists—without whom, it is important to remember, the ensemble could not receive this public funding to begin with.
Interact’s disabled artists are paid up to the maximum allowed by their disability benefits, generally between $700-1,300 per month depending on the kind of disability benefits they receive. [77][78] For reference, the federal poverty guideline for a single adult is about $1,000 per month. [79] Due to these income limits, payment to Interact’s disabled artists is typically less than payment to their non-disabled artists.
Despite this payment disparity, in my talks with them, many of Interact’s disabled ensemble members viewed their involvement with Interact as mutually beneficial. Tracing the history of disability benefits in the United States, Kim Nielsen explains this seemingly hegemonic response from Interact’s disabled artists: “People with disabilities who did labor for wages or other financial remuneration became increasingly disregarded as a contradiction in terms, for they didn’t fit the preconception of someone with a disability.” [80] In other words, disability benefits in the United States began with the assumption that disability meant an inability to earn money. Today, the disability benefits system in Minnesota and the United States continues this legacy by ensuring that disabled persons do not earn more than poverty-level wages. While Interact’s disabled artists make less money than the ensemble’s non-disabled artists, the disability benefits system presents this as a desirable situation for them. They can work as professional artists—and importantly, be treated as professional artists—while not worrying about forfeiting their disability income.
Further, due to the art world’s educational structures, it is unlikely that Interact’s disabled artists would be able to work as professional artists, if not for the ensemble’s interdependent relationship with Minnesota’s disability systems. Just 50 years ago, disabled persons in the United States were denied the right to public education, a common way that children first encounter and practice a variety of art forms. [81] Despite national policies like the ADA and the Individuals with Disabilities Education Act (IDEA) that seek to rectify these past harms, special education practices often follow “the ableist precept that to be able-bodied is better than being disabled.” [82] This viewpoint was echoed in a conversation I had with a disabled artist about her experiences navigating the music world: “I have cerebral palsy. I can play piano, but I can’t be very precise. I have always had a good ear, so it never sounds bad, but on the trumpet I can be eloquent. I can say things.” [83] In talking about the difference in how she plays piano and trumpet, this artist exhibited clear artistic confidence while simultaneously upholding ableist ideas about what constitutes “good music.” In her view, her disability prevents her from playing the piano in a way that meets the music world’s expectations—and her own expectations—for how a piano should be played.
This idea of “good art” is highly informed by the art world’s curatorial and educational structures. [84] Crehan makes this clear in her circular analysis of the art world: “What makes Warhol’s replicas of ordinary Brillo boxes ‘art’ is the declaration by the art world that they are art.” [85] Explaining this point, Crehan contends that making “good art” relies “on a certain familiarity with the art in question and a knowledge of its conventions—a knowledge that the more privileged are likely to have internalized.” [86] This suggests that people who have access to arts education in primary, secondary, and post-secondary settings are more likely to make art that is deemed worthwhile by art institutions. Disabled artists, historically due to institutionalization and in more recent years due to ableist pedagogies that limit their artistic pursuits, are often unable to gain such knowledge.
From apparent necessity, then, Interact’s practice aligns with the outsider art strand of making and presenting art. Outsider art is characterized “by [the artists’] difference from their audience and by their mental and social dysfunctionalities regarding prevailing standards of normal behaviour.” [87] Dating back to the early 1900s, outsider art serves Interact and other disability arts practitioners as a relatively longstanding artistic tradition that provides important context for their practice. Further, Interact’s alignment with outsider art highlights a compelling tension between the goals of the Olmstead Plan and the ensemble’s position within the art world; the Olmstead Plan seeks to integrate disabled persons as much as possible while Interact’s position in the art world demands that they broadcast their outsider-ness.
Residing in this interplay of the disability world and the art world, Interact’s practice is a response to how the Minnesota government views disabled residents and to how art institutions view disabled artists. For Interact, disability laws and policies function as raw material. The ensemble has created something with them that is completely unique—no other arts group in the state uses a similar model (that is—legally an adult day center, professionally an arts ensemble). By playing with Minnesota’s legislation and funding sources, Interact’s practice subverts the idea that disabled persons need help from their government. Instead, they call for governments to learn from their disabled residents—for example, by challenging the Olmstead Plan’s concerning tendency toward disability erasure. What’s more, in contrast to the art’s world mythology of the lone, autonomous artist, Interact’s practice is possible only because of their high levels of structural interdependence with the Minnesota government.
Playing with Models: Subverting the “Carer-Cared for” Dynamic at the Cultural Level
My work with Interact centered on using research to demonstrate how they fulfill their mission—“to create art that challenges perceptions of disability.” [88] Underlying this mission is a critique of the medical model of disability; this is the perception of disability that Interact challenges most often. Still dominant in Minnesota and beyond, the medical model is characterized by the idea of disability as a personal tragedy:
[T]he most intrusive, violating and invalidating experiences for disabled people … are justified and rationalised by the personal tragedy view of disability and impairment. The tragedy is to be avoided, eradicated or non-disabled (normalised) by all possible means. [89]
In 2017, I saw Interact’s production of Feast of Fools, which ran for 17 performances to about 1,500 Minnesotans. Inspired by a medieval holiday during which peasants and nobility switch social positions for a day, the production focused on the historical perception of disabled persons as incapable fools, suggesting that contemporary ideas about disabled persons are not far off from this historical depiction. [90][91][92][93] By exploring this medieval holiday in a modern context, the production prompted audiences to imagine a different world, one in which people’s impairments do not disable them.
In promoting the social model of disability, however, Feast of Fools aligned with major critiques of the model. While the production demonstrated Interact’s embrace of “the entire spectrum of disability,” it overlooked important differences in the lives of disabled people, such as differences due to type of disability, or due to personal or cultural identity. [94][95] The Feast of Fools cast—comprised of about 40 disabled and non-disabled artists—included individuals who had a variety of physical, sensory, and cognitive impairments. However, the production did not address the wide-ranging ways in which these impairments affected their disabled realities, and ultimately offered a homogenous depiction of disability. Similarly, Interact likewise asserts that they are “multi-cultural, intergenerational”—which is true—though these aspects of artists’ identities (culture, age, etc.) and their intersection with disability were likewise unexamined in Feast of Fools. [96]
Interact’s essentializing of the disability experience is perhaps understandable considering the ensemble’s position in the art world—an ensemble of outsiders. Within the Minnesota arts community, Interact represents one of the few “voices” of disabled artists. Consequently, the ensemble is often asked to share their “disability perspective” in numerous settings. For example, for three years Interact led an arts education residency at a Minnesota primary school. Interact’s disabled ensemble members, in partnership with non-disabled teaching artists, led arts classes as part of the residency. The goals of these classes were three-fold: 1) for the students to learn about disability and enhance their arts skills, 2) for the non-disabled teaching artists to develop skills in working with disabled artists, and 3) for Interact’s disabled artists to further develop their skills as teaching artists.
During the first year of the residency, my evaluation asked students what they learned about disability. I was surprised to hear that the residency curriculum did not explicitly address disability; as a result, the evaluation showed that students didn’t learn much about it. In fact, in response to this aspect of the evaluation, a non-disabled teaching artist asked, “Why would we tell the students about disability? They respected the Interact artists; they just accepted them.” [97] This response is akin to “disability blindness” (similar to “colorblindness” in the realm of race studies), and is heavily critiqued as counterproductive to the disability rights movement as well as harmful to disabled people in that it ignores disability discrimination and its deleterious effects. [98][99][100][101][102][103] For the following year’s residency, based on findings from the previous evaluation, Interact’s disabled artists discussed their disabilities with students. The results from subsequent evaluations suggested that all parties—the students, non-disabled teaching artists, and Interact’s disabled artists—felt that this was a useful and meaningful approach for teaching young people about disability.
As another example, for a number of years Interact hosted arts workshops with disability professionals. In the workshops, Interact’s disabled artists introduced the ensemble’s practice to a variety of disability professionals, such as direct care providers and disability service administrators. I attended one of these workshops in 2017. Comments from disability professionals after the workshop suggested that many of them held conceptions of disability rooted in the medical model, with one of them saying:
[I] didn’t realize right away that the workshop leaders were artists with Interact. I thought they were staff people. I think it was a good way to challenge our ideas and assumptions about what disabilities look like. [104]
As for Interact’s disabled artists, many mentioned that they appreciated having the opportunity to teach others, with one artist saying, “I was just born to lead and to teach people new things.” [105] These two examples of Interact’s work align with the affirmative model of disability, in that they elevate the individual strengths and lived experiences of the ensemble’s disabled artists.
In her text about disability art and culture, Kuppers addresses the allure of aligning with a single disability model: “The very notion of ‘models’ as a way of organizing knowledge is very seductive, as it allows one to shape complex life situations and power relations into manageable stories.” [106] The reality for disability arts practitioners, however, is that these models don’t exist in the world as bounded, homogenous understandings of disability. Rather, they exist as the highly individualized ways that people in a classroom or a theater venue, for instance, think about disability. And so disability arts practitioners navigate disparate ideas about disability nearly all the time. In response to this cultural reality, Interact takes a “multi-model” approach. The ensemble’s larger efforts often align with the social model—portraying themselves as united by their outsider-ness—while their more intimate efforts offer personalized depictions of disability, in alignment with the affirmative model.
This multi-model approach serves as an example of Kuppers’s vision for a disability culture that is flexible enough to hold disparate viewpoints: “The diversity of our aesthetic political critique is a necessary and important part of disability culture’s self-imaging. We need multiple different access points.” [107] In presenting multiple understandings of disability, Interact acknowledges that none of these models adequately captures their members’ disabled realities; no model gets it completely right.
Playing Together: Subverting the “Carer-Cared for” Dynamic at the Personal Level
In preparing this essay, I met with a disabled artist to chat about this label—“disabled artist”—and what it means to him. As we sat down, he began talking about the Independent Living Fund in the United Kingdom, which provides financial support to disabled persons, and how the fund at that time was at risk of ending. [108] We then talked about the intricacies of policies like the Independent Living Fund and the theories that underpin disability models. As we did so he said, “It’s funny. The world is falling down around us [referring to the fund potentially ending] and we’re talking about this.” [109] He was calling attention to the gap between the concept of disability, represented by these policies and models, and the lived experience of disability. He then reflected, however, that his life has been inextricably connected to such abstractions. As an example, he shared his experience with the United Kingdom’s school integration efforts, catalyzed by education policies that were rooted in the social model of disability:
I went to a special school at first. Then I became the only disabled kid in a group of non-disabled kids. I remember that the teacher had us play games that didn’t allow for my disability. But eventually I met some friends who didn’t mind breaking the rules, so the games were more fair for me and more fun for them. [110]
Ambient Jam plays with a similar tension. The ensemble rebels against the concept of disability while simultaneously acknowledging its immense effect on their work and relationships. For example, during my time with Ambient Jam, there was a perceived expectation felt among non-disabled artists to engage continuously in creative expression during sessions—and to do so with the ensemble’s disabled artists in particular. As a non-disabled artist commented after a session:
I sometimes feel like I’m not doing enough… [111]
I suggest that this pressure—for non-disabled artists to do something during sessions, continuously—stems from Ambient Jam’s structural and cultural context. Their disabled artists pay to attend sessions through their Personal Independence Payment, another source of public funding that supports disabled people in the United Kingdom. [112] The ensemble’s non-disabled artists, on the other hand, are paid to attend sessions. And so there is an underlying suggestion, rooted in the United Kingdom’s disability benefits system—and the prevailing ideas about disability that undergird this system—that Ambient Jam’s disabled artists are paying for a service and that the ensemble’s non-disabled artists should provide it.
Pondering these complexities, a non-disabled artist aptly noted, “Doing nothing in the space is actually doing a lot.” [113] Simply being in the space—in an embodied, enminded way—is a subversive choice due to the structural and cultural pressures suggesting that the non-disabled artists should be caring for the disabled artists. This realization was particularly poignant for me. It was freeing to show up wholly as myself, bringing with me the aches in my back, the anxieties in my mind. As a non-disabled artist explained: “Each of us brings our own needs.” [114] The needs of other ensemble members arose from vision impairment, limited mobility, sensitivity to loud sounds, desire for routine, and so on. Importantly, we didn’t do anything with these needs—we didn’t try to solve them, they didn’t become the focal point of any session—but they nonetheless informed our art-making. We accommodated them.
Ambient Jam’s practice—characterized by the presupposed inclusion of artists who have been systemically and culturally barred from the art world—necessitates that the ensemble renounces to some degree the art world’s criteria for “good art.” Ambient Jam’s art-making is not focused on honing specific techniques or aligning with particular art forms. Rather, the ensemble pulls ideas irreverently from multiple art forms—most often dance, theater, and music, but also poetry, drawing, textiles—and applies them toward finding collective expression among artists who experience the world in strikingly different ways.
In this way, Ambient Jam aligns with Kelly’s assertion that community artists should not concentrate on the mechanical techniques of an art form but rather on how to instrumentalize art to bring about collectivism and social change. [115] Similarly, as Crehan notes, “Art may have … criteria of quality other than those defined by aesthetic quality.” [116] Ambient Jam’s criteria of quality is not characterized by traditional understandings of aesthetics—visual beauty, for instance, or performative spectacle—but rather by what has been called “presence aesthetics,” or art that “elicit[s] moments of intensified being-in-the-world.” [117] I suggest that Ambient Jam’s practice stretches this idea further. The ensemble’s aesthetic is characterized not just by presence, but by presence together—resulting in art that elicits moments of intensified being-in-the-world-together.
As an ensemble comprised of artists with varying experiences and understandings of disability, Ambient Jam inevitably holds a diversity of perspectives about some critical questions. When is art-making agentic and when is it paternalistic? When does Ambient Jam’s aesthetic of being-in-the-world-together subvert the “carer-cared for” dynamic—and when does it not?
For example, there is a years-long debate within Ambient Jam about artistic intention. In recounting this debate, a non-disabled artist noted, “The disabled members’ agency needs to be a presupposition of everything we do.” [118] They then told a story about how, in their view, the ensemble’s non-disabled artists sometimes impose artistic intention on the disabled artists. Prior to a particular a session, some non-disabled artists decided that the session should be quiet, tranquil. A few minutes later, a disabled artist arrived and was visibly excited, loudly verbalizing as he entered the room. The non-disabled artists, however, still wanted a calming session—and so their artistic intention represented an imposition; it restricted the just-arrived artist’s loudness. This disabled artist should have been encouraged to express himself however he wanted, according to the person who told me this story—but they also noted that some ensemble members may disagree with their telling of it.
Regardless of the “truth” of this story, this ongoing debate showcases that there isn’t one understanding of disability that determines how the ensemble approaches “being together” during sessions. Rather, Ambient Jam’s members play with multiple and sometimes contradictory ideas about disability, resulting in a nuanced aesthetic that undermines the clean-cut unreality of disability models and policies.
Art-making amidst these personal, cultural, and structural complexities demands as well as creates what I refer to as aesthetic relationships. To illustrate the significance of aesthetic relationships for Ambient Jam, I present two memories—from my first session and my last:
As I arrive for my first session, I enter the space and am introduced to some of the non-disabled artists. Everyone is warming up in different ways—stretching, humming, singing. I sit on a mat on the floor, legs crossed, humming lightly. Some of the disabled artists begin to arrive; I’m introduced to them as well. As the session starts, I move with a few artists, disabled and non-disabled. Eventually, I am sitting face-to-face with Judith, a disabled artist. There are some pieces of mesh fabric nearby; we play with these. She seems to enjoy it. I enjoy it. For about 30 minutes, we hold a piece of fabric between us—pulling it taut, allowing some slack, moving with it, holding it still. We explore its material and relational properties. I feel a little self-conscious (am I doing this right?), but try to disregard the feeling. Time passes quickly. At the end of the session, I feel as though I’ve resurfaced from deep water.
I am among the first artists to arrive for my last session. As the other non-disabled artists show up, we hug and chat. As the disabled artists arrive, I greet them, welcoming them to the space. I sit with a disabled artist—Jack—for a while, nonverbally taking note of how he’s doing today, tactilely inviting him to move with me. He declines; this is not unexpected. I sit with him a bit longer. He stands and gives me a hug—he is affectionate like that. I notice Judith, sitting on the floor, playing with some mesh fabric. She is swaying gently back and forth. Without words, I say goodbye to Jack and make my way to Judith. I sit with her back-to-back. We sway together. I realize why I was drawn to her—I am feeling a bit tired, withdrawn. She is open, generous. I feel comfortable. We sway, slowly, rhythmically. It’s rejuvenating. At the session’s end, I want to keep swaying, to stay longer together in the deep water.
These memories speak to my aesthetic relationships with the ensemble as a whole and highlight the trajectory of my aesthetic relationship with Judith in particular. My connection with Judith grounded me from my first session to my last—it offered comfort, security. It felt vitally important when navigating the structural and cultural complexities of disability together, and when learning the other ensemble members’ varying physical, sensory, and cognitive modes. Becoming acquainted with all of these different modes of being was an intentional and at times uneasy process that stretched my understanding of being-in-the-world. Kuppers captures my experience well: “This is all a lot of work, trying to think without victimization and exclusion, forgiving others and oneself when it is not yet working well, and being aware of the many different forces of privilege and power that mark how we got here.” [119] Building aesthetic relationships across different “ways of being” is the center of Ambient Jam’s practice—because it is through these relationships that the ensemble subverts the “carer-cared for” dynamic. By the end of my time with the ensemble, I found myself—a non-disabled artist—emotionally, mentally, and physically relying on Judith—a disabled artist. She was literally caring for me, and she did so by simply being together with me.
As a disabled artist summarized, “The best disability art is when you turn something upside-down and it’s still right-side up.” [120] Ambient Jam’s practice does precisely this. It turns typical ideas of disability and non-disability upside-down, blurring these seemingly rigid categories, exploring how porous and bendable they are. In doing so, they offer an immediate and grounded alternative—an upside-down that is also right-side up—to the paternalism of disability policy and the ableist idea that disabled people need help from non-disabled people. Their practice presents an aesthetic—and an ethic—of accommodating vastly diverse ways of being-in-the-world. Amidst this diversity, Ambient Jam strives toward collective expression characterized by intensified moments of being-in-the-world-together; then they cultivate the “ways of being together” that arise from such moments.
The Disability Arts and Measuring Social Change: Playing with Knowledge Production
The disability arts—and the ambivalences I have explored in this essay—suggest that measuring arts-based social change requires a reimagining of the prevailing ontological position of research and evaluation efforts. Arguing for moving beyond the “‘natural science’ experimental model” of knowledge production, Galloway pushes theory-driven evaluation as ontologically suitable for capturing the social effect of the arts. [121] She asserts that the natural science model—concerned with causal relationships, generalizable findings, and replicable studies—is ill matched for the arts: “[It] seek[s] to control or suppress precisely those types of attributes which may play a role in determining the potential effects of the arts. These [attributes] are purposively ruled out of the analysis either explicitly, by suppressing them, or implicitly, by making the assumption that these are constant.” [122] The “types of attributes” Galloway refers to are a project’s cultural, social, political, legal, and economic circumstances—which are grounded in where, with whom, and by what means the project occurs. These circumstances are of immense importance to the arts.
To account for such circumstances in knowledge production efforts, the idea of “intervention fidelity” should be reframed. I suggest that intervention fidelity in the arts should not refer solely to the degree to which a project was implemented as planned, which is common for research and evaluation efforts. [123] Rather, fidelity for the arts should refer to taking note of how a project naturally and necessarily evolves in response to where it occurs, who is involved, and how it comes about—and then adapting the research and evaluation methods in response to these changes. Put another way, rather than sticking steadfast to a set of predetermined methods or outcomes, I suggest that arts evaluators should consider their work as “playing with knowledge production,” intertwining their research efforts with the inevitable changes that artists make when implementing an art project. This suggestion, taking inspiration from seminal work about rigor in qualitative research, emphasizes the ongoing verification of ontological alignment between intervention and evaluation:
[Q]ualitative research is iterative rather than linear, so that a good qualitative researcher moves back and forth between design and implementation to ensure congruence among question formulation, literature, recruitment, data collection strategies, and analysis. Verification strategies help the researcher identify when to continue, stop or modify the research process in order to achieve reliability and validity and ensure rigor. [124]
In kind, I suggest that arts evaluators should strive for a similar interdependence with art projects, embracing a “moving back and forth between design and implementation” and thus mirroring the lifespans of the projects in question.
In moving back and forth between the roles of artist and researcher with Ambient Jam, for example, I inevitably became acquainted with the overlaps and divergences of these two “ways of being” with the ensemble. In navigating these roles, I was able to identify the phenomenon of aesthetic relationships as paramount for learning about Ambient Jam’s social effect. Consequently, I suggest that an evaluation of Ambient Jam should be guided by aesthetic relationships—because these relationships represent how the ensemble subverts the “carer-cared for” dynamic and therefore their main strategy for effecting social change. Such an evaluation would mean that the ensemble’s practice and its knowledge production efforts are grounded in the same ontology. The theory underpinning this evaluation, then, would necessitate an exploration of the mechanisms by which Ambient Jam’s aesthetic relationships come about, the type of social change catalyzed by these relationships, and how and to what degree these relationships produce this social change. Such an evaluation, I suggest, would not only result in valuable knowledge for Ambient Jam and those interested in their work, but perhaps even generalizable insights about how art helps to bring about relationship-driven social change.
Ryan Evans is an arts researcher and participatory artist. He is a research scientist with Wilder Research, where he leads projects with nonprofits, foundations, and public agencies that focus on the arts, culture, and disability. Ryan also runs Recreation Arts, a participatory arts group that does art with older adults living with disabilities and chronic health conditions.
Notes:
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[2] Kate Crehan, Community Art: An Anthropological Perspective (New York: Berg Publishers, 2011).
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