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Disability art and culture: A model for imaginative ways to integrate the community
ALTER, European Journal of Disability Research 12 (2018) 81–95
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Research paper
Disability art and culture: A model for imaginative ways to integrate the community Pratiques artistiques et culturelles des personnes handicapées : un modèle imaginative pour intégrer la communauté Carrie Sandahl ∗ University of Illinois, Chicago, USA
a r t i c l e
i n f o
Article history: Available online 19 April 2018
Keywords: Disability art Disability culture Physically integrated dance
a b s t r a c t This article suggests a turn to disabled people’s formations of disability culture, as expressed in the arts, for new ways to imagine community integration. As I look to the arts, I examine not only the representations disabled artists create, but the art-making and arts-presenting processes themselves. I illustrate this argument by analyzing innovations in the integration of people with disabilities in professional concert dance in two American companies: AXIS Dance Company and Kinetic Light. © 2018 Association ALTER. Published by Elsevier Masson SAS. All rights reserved.
r é s u m é Mots clés : Pratiques artistiques des personnes handicapées Culture des personnes handicapées Danse intégrée
Cet article rend compte d’un changement dans la formation des personnes handicapées à la « culture du handicap », telle qu’elle s’exprime dans les arts, pour mettre au jour de nouvelles fac¸ons d’imaginer l’« intégration communautaire ». Lorsque je regarde les arts, j’analyse non seulement les représentations que les artistes handicapés créent, mais également les processus d’élaboration/création artistique ainsi que les processus de présentation et de diffusion de leurs œuvres. J’illustre ensuite mon propos
∗ Correspondence. 1640 W. Roosevelt Rd (mc 626), Chicago, IL 60608-6904, USA. E-mail address: [email protected] https://doi.org/10.1016/j.alter.2018.04.004 1875-0672/© 2018 Association ALTER. Published by Elsevier Masson SAS. All rights reserved.
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à partir de l’étude des innovations réalisées, en termes d’intégration des personnes handicapées, dans les spectacles professionnels de danse de deux compagnies américaines : AXIS Dance Company et Kinetic Light. © 2018 Asso´ ´ ciation ALTER. Publie´ par Elsevier Masson SAS. Tous droits reserv es.
1. Introduction For the 2017 ALTER conference at the University of Lausanne, I was invited to give a keynote lecture related to the conference theme, which was “Disability, Recognition and ‘Community living’: Diversity of practices and plurality of values.”1 As a disabled scholar and artist who teaches disability studies courses at the University of Illinois at Chicago, I thought carefully about what, at this point in the development of our field, a disability art and culture perspective might add to our conversations about how people with and without disabilities live together. What the diverse international disability studies community shares is a profound commitment to social justice for people with disabilities. Though we share this commitment, how we enact change and what models we hold forth to guide our efforts are specific to our cultural contexts and academic home disciplines.2 For the keynote and this expanded version, I took our shared commitment for social justice as a given, but I interrogated what we mean by community living. What does community living look like? In this article, I suggest a turn to disabled people’s formations of disability culture, as expressed in the arts, for new ways to imagine community living.3 As I look to the arts, I examine not only the representations disabled artists create, but the art-making and arts-presenting processes themselves. I illustrate this argument by analyzing innovations in the integration of people with disabilities in professional concert dance in two American companies: AXIS Dance Company and Kinetic Light.4 2. Background integration In the United States, the term “community living” refers to people with and without disabilities inhabiting a shared community space, but the extent to which they are integrated or segregated varies. Community living includes domains such as employment, housing, recreation, and education. Consider the following scenarios. People with disabilities might be employed at a sheltered workshop in the larger community, but that workshop would be still be a segregated environment. Disabled people might be living in a small group home and taken on excursions by staff for shopping and recreation in the larger community, but more so as visitors than fully fledged members.5 Disabled children might attend their neighbourhood public school, but they may spend much of their day in “resource rooms” in which they have no interaction with their nondisabled peers. In each domain,
1 I want to thank Patrick Devlieger, Anne Marcellini, and Laurent Paccaud, for their invitation on behalf of ALTER and their organization of my visit. 2 The conference website provided this provocation that guided my understanding: “Today, many countries have signed the United Nation Convention of the Rights of Persons with Disabilities. They try as well, with varying success, to guide policy and practices, and to transform social perceptions and participation of people with special needs. However we can see that the models of ‘living together’ differ, depending on institutional contexts and communities. The 2017 conference of ALTER proposes a better understanding of the diversity of practices and experiences of disability in different areas (districts, counties, regions, nations) marked by contrasted socio-historical, political and cultural configurations (Alter, 2017).” 3 I define disability art and culture more fully in Section 4. 4 I purposely toggle between person-first language (e.g. people with disabilities) and identity-first language (e.g. disabled person) as an imperfect solution to the problem that there is no general agreement about preferred terminology. My choice to use both addresses the preferred nomenclature of different disability constituencies in the United States. Personally, I prefer identity-first language as do most disability activists and disability studies scholars in the humanities, which is why I use it most often. I use the term “impairment” to refer to a disabled person’s primary physical, mental, or sensory difference. In the arts, our bodies are our means of expression, and I describe the configuration of people’s bodies, which some may find uncomfortable, but doing so is necessary to describe and analyze aesthetic choices. 5 The characterization of disabled people as “visitors” in this context comes from Snow (2018).
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the larger community does little to change its structures. Instead these domains flex to incorporate disabled people as segregated individuals or groups. In these scenarios, it is unclear how much choice a disabled person may have in terms of whether they are integrated or segregated, especially if they are minors or if they have cognitive or psychiatric disabilities. In 2016, the American Association on Intellectual and Developmental Disabilities (AAIDD) and the Association of University Centers on Disabilities (AUCD) issued a joint statement on community living that allows for segregated settings with varying levels of support (such as small group homes) but emphasizes that disabled people must be able to choose from the widest range of options: Community living and participation means being able to live where and with whom you choose; work and earn a living wage; participate in meaningful community activities based on personal interests; have relationships with friends, family and significant others; be physically and emotionally healthy; be able to worship where and with whom you choose (if desired); have opportunities to learn, grow and make informed choices; and carry out responsibilities of citizenship such as paying taxes and voting.6 Choosing whether or not one participates in segregated or integrated settings depends on the person’s socio-economic status, age, and impairment type. The efficacy, ethics, and necessity for segregated settings is beyond the scope of this article, but I raise the issue of choice because it is central to my argument. Disabled people should have a choice about how we live our lives in the community, and sometimes that choice might be a segregated environment. The term “community integration,” instead of community living, is often used in the U.S. to emphasize the role of choice by disabled consumers and focuses on disabled and nondisabled people living, working, and playing side-by-side. My work is informed by this integration model, which is a guiding principle of the Americans with Disabilities Act (ADA, 2010): The integration of people with disabilities into the mainstream of American life is a fundamental purpose of the ADA. Historically, public entities provided separate programs for people with disabilities and denied them the right to participate in the programs provided to everyone else. The ADA prohibits public entities from isolating, separating, or denying people with disabilities the opportunity to participate in the programs that are offered to others. Programs, activities, and services must be provided to people with disabilities in integrated settings. The ADA neither requires nor prohibits programs specifically for people with disabilities. But, when a public entity offers a special program as an alternative, individuals with disabilities have the right to choose whether to participate in the special program or in the regular program [ADA (2017) Update: p. 2]. Though this principle includes the right for disabled people to choose between a special (i.e. segregated) program and a regular program, the ADA includes two exceptions to that choice: • when “different treatment [. . .] is necessary in order for a person with a disability to participate in a civic activity,” and; • “when it simply is not possible to integrate people with disabilities without fundamentally altering the nature of a program, service, or activity.” (U.S. Department of Justice, p. 3).7 Even with the ADA’s express preference and focus on integration, these exceptions point to the limits of the law and its manifestation in community integration. Much like “community living,” “community integration” is limited by the structures and capacities of “mainstream of American life.” 3. A two-pronged approach In the spirit of recalibrating segregation and integration of disabled people into the American mainstream, I take a two-pronged approach in the work that I do. I work toward access to the mainstream,
6 Their statement goes on to explain the unfortunate situation that “many people with IDD also may still live in large, segregated congregate places including large group homes (with 7 or more people living there), residential programs located on campuses, and state and private institutions, which could limit community inclusion.” 7 Thank you to the Director of the Great Lakes ADA Center, Robin Jones, and the Executive Director of Equip for Equality, Zena Naditch, for their assistance in understanding the guiding principle of integration in the ADA and its exceptions.
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while at the same time paying attention to and putting resources toward self-chosen, disability-centric spaces. When I use the term “disability-centric,” I am referring to segregated settings primarily — but not exclusively — run by disabled people. I find that these settings allow us to develop what is unique to disability experience. Our value as disabled people includes the powerful potential to generate alternatives to the mainstream based on such experience. I enact this two-pronged approach in my role as Director of an organization called “Bodies of Work: A Network of Disability Art and Culture” out of the University of Illinois at Chicago’s Department of Disability and Human Development. Bodies of Work is a consortium of organizations (e.g. museums, theaters, non-profits, foundations) and individual artists throughout the Chicagoland area who contribute to the growth of disability art and culture. Since 2006, Bodies of Work has held two international disability art festivals in Chicago, and we produce or co-produce a season of up to 30 events per year. These events include, for example, an annual series co-produced with Access Living, Chicago’s influential Center for Independent Living that advocates for disabled people’s civil rights. The series includes a disability culture cabaret called Outtakes, an integrated dance concert called Counterbalance, and a music/social dance party called Battle of the Bands. A sampling of other activities includes an artist residency program with the foundation 3Arts, lectures and panel discussions, professional development workshops, and audience development initiatives with the Museum of Contemporary Art Chicago. Our mission is to serve as a catalyst for the development of disability art and culture that illuminates the disability experience in new and unexpected ways. (Bodies of Work, 2017) To enact this mission, we center our efforts on the creation of new work by disabled artists that generally defies the capacity of mainstream arts institutions as well as the aesthetic traditions of specific media and genres. This defiance, I claim, is our greatest asset, but it also leads us to a conundrum: how to present work in mainstream venues that are ill-equipped to integrate artists with disabilities in terms of access, accommodations, and curatorial practice. To address this conundrum, we must advocate for the integration of both artists and audiences with disabilities to build capacity in the arts infrastructure. Meaningful integration requires fundamental changes that impact every aspect of an arts organization – from seating configurations in a theater, to marketing strategies, to budgeting for access and accommodations, to staff trainings, to making artistic and curatorial choices. I have learned through directing Bodies of Work seemingly incompatible lessons about how to integrate people with and without disabilities in the mainstream arts world. The first is that the mainstream arts world is resistant to fundamental change beyond minimal compliance to laws such as the Americans with Disabilities Act, and even minimal compliance cannot be assumed.8 Most accommodations are provided for audience members under the assumption that disabled people are consumers rather than producers of the arts. The second seems counterintuitive: Disabled artists tend to succeed in the mainstream when their work exceeds rather than meets mainstream mores and expectations. The break-through work of disabled artists is that which most tends to challenge, not replicate, mainstream traditions. The third is a lesson that I find most relevant here: when the mainstream arts world recognizes the innovation of disability-centric art, it is most amenable to significant change. Without experiencing disabled artists’ differences, the mainstream status quo may not be able to imagine the ways it could be transformed. 4. The three lessons I want to unpack these lessons before illustrating them through examples from dance. As I discussed earlier in my discussion of the ADA, the law has limitations that stifle radical change. The commonsense definition of the term “mainstream” sows the seeds of its own limitations. The English online Oxford Living Dictionary defines “mainstream” as “the ideas, attitudes, or activities that are shared by most people and regarded as normal or conventional” (Mainstream, 2017). This definition relies on the
8 In this article, I include arts organizations that consider themselves cutting-edge and experience as “mainstream”. These organizations tend to follow similar organizational structures and architectural constraints as their conservative peers. And while they may be progressive, their actions toward including disabled people tend to be minimal. Sometimes, they are even more difficult to convince to put resources into access and accommodations because their budgets tend to be very limited and are more easily exempted from requirements to do so under the Americans with Disabilities Act.
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centrality of “normalcy” and “convention,” which are both terms that exclude disabled people by denotation. As long as the mainstream is the assumed norm of public life, its structures remain intact and incapable of changing significantly enough to incorporate disabled people in meaningful ways, relegating many of us to the margins. Disabled peoples’ creative potential to reshape the mainstream remains largely untapped. The ADA makes promises that have yet to be fulfilled. The ADA applies to many mainstream arts organizations under Title III, which covers “Places of Public Accommodations,” including for-profit and non-profit entities. Despite the significant advances made toward providing access to mainstream public life under the ADA, limitation to further advancement is built into the legislation itself. This limitation is due to a gaping loophole, which is that an accommodation must be “reasonable” and not present an “undue burden.” Consider the following excerpt from Title III: [. . .] entities must make reasonable modifications to their policies, practices, and procedures that deny access unless the modification would fundamentally alter the nature of the goods or services provided. When necessary, public accommodations are required to provide auxiliary aids, such as Braille material, to ensure effective communication unless it would cause an undue burden for the public accommodation. (ADA Great Lakes Center, 2017). Disabled peoples’ requests for modifications, then, must be “reasonable” and must not present “undue burden.” This definition begs the question of whose reason determines what is and is not acceptable, and whose reason determines the threshold of what is considered an undue burden. Whose reason determines how public and private dollars are spent to make our world meaningfully accessible to the full range of human variation? It is not a stretch to claim that the concept of “reason” itself is ableist, which is to say that reason is based on nondisabled people’s ways of being in the world.9 I offer that disabled peoples’ unreasonableness and burdensomeness are sources of ingenuity. They present generative challenge to ableist social formations. Disabled people’s accommodations often do change the fundamental nature of goods, services, buildings, and art forms – ultimately, any domain in which people with significant impairments appear or have yet to appear. Disabled people have creatively, and artfully, generated change through their unique ways of being in the world. To create space in which disabled people can generate creative solutions to mainstream barriers, I believe we need to maintain our chosen, disability-centric space where disabled people, along with nondisabled allies, can be together under the leadership and terms of disabled people, as unreasonable and as burdensome as those terms may be. Looking again at the ADA, it is assumed that integration starts with the mainstream, which makes accommodations to include disabled people. What if we challenge that assumption by starting integration efforts in a segregated space instead? With these explanations in mind, I want to re-pack the three lessons. I offer that we balance our efforts at fostering integration in the mainstream with efforts at cultivating the richness of disabilitycentric spaces. When we focus on disabled peoples’ innovation, the mainstream begins to take notice. The mainstream and the disability-centric spheres begin to overlap and blur; they innovate and integrate, creating something fundamentally new. 5. Defining disability art To understand how disability art is a generative source from which alternative ways to integrate may spring, I explore here some of its fundamental tenets (Sandahl, 2005, 2009; Sandahl and Auslander, 2005). These tenets guide the choices Bodies of Work makes in its programming. I further explicate and illustrate these tenets through the example of dance that follows this section. Disability art mines the disabled body, mind, and senses for creative insight. Instead of adapting to the way a mainstream art form has been created with standardized bodies particular to it, disability art starts with disability experiences and disabled bodies just as they are.10 Disability art reflects
9 By “ableism”, I mean active and passive forms of discrimination against disabled people, disability oppression, and structures of exclusion (e.g. architecture, the English language, and social policies). Ableism also includes the unacknowledged assumption that society is organized around able-bodiedness. 10 Artists associated with Bodies of Work must self-identify as a disabled people (or people with disabilities) and be willing to discuss publically how their work contributes to disability art and culture.
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these experiences and bodily configurations, either in content or form. In other words, the artwork’s content may be “about” disability explicitly or its form may be influenced by impairment implicitly. For example, a painting may not appear to be about disability in content (e.g. a landscape) but the painting might retain traces of impairment in form (e.g. brushstrokes of paint created by a brush held in the mouth rather than the hand). Disability art is created by and for disabled people, not merely about disabled people, and is accessible. (e.g. portraits of disabled people would not be exhibited on the second floor of a no-elevator building). Though the work is presented to all audiences, disability art does not feel compelled to serve a consciousness-raising lesson, unlike mainstream art featuring disability such as Hollywood movies.11 When these movies feature disabled characters, they are geared toward teaching nondisabled characters transformative lessons about themselves. These nondisabled characters serve as metonyms for mainstream society itself. Disability art rejects its interpellation to didacticism, explores the disability experience in and of itself, rather than serving as an object lesson in kindness, for example.12 Furthermore, disability art intersectional, informed by every other aspect of identity such as race, class, gender, and sexuality. And finally, disability art contributes to the deliberate building of disability culture, which is an expression of disability community values and aesthetics whether in the arts, activism, or daily life (e.g. interdependence and self-determination rather than the typical American notion of independence).13 5.1. Extended example: disability and dance Taking into account the above definition of disability art, I apply it to an extended example to show how these tenets can move from disability-centric art space to the mainstream, re-shaping the mainstream along the way. These tenets can be applied across media (e.g. theater, painting, poetry, and film), but I focus on dance in this article because it most directly illustrates what happens when disability generates alternatives to a medium in both content and form.14 I compare and contrast four types of dance to make my case here: • • • •
mainstream dance; physically integrated dance; disability dance, and; new integrated dance (the third and fourth are terms of my coinage).
For each example, I will do a close reading of an image that typifies the aesthetics of each one of these four types, focusing on the composition of bodies in space, the scenography, and costumes. I supplement my reading of the static image with analysis of key choreographic moments, and I contextualize my analyses with artist statements and promotional materials, especially as they relate to disability activism. 5.2. Mainstream dance: ballet The first type of dance can be illustrated in the most mainstream dance form in the Western canon: ballet. I will keep my description and analysis of this type of dance brief since I am delineating its basic features as means of setting a base line comparison for the other three disability-related dance types. I chose a stock photo to illustrate ballet’s basic features (Fig. 1). The nature of a stock photo is that it is generic, which is fitting because ballet is so standardized that I could easily swap this photo out
11 I am currently working on a feature-length documentary film titled Code of the Freaks due to premiere in the summer of 2018. Collaborators include Susan Nussbaum, Salome Chasnoff, Aly Patsavas, and Jerzy Rose (Code, 2017). 12 The didacticism of mainstream disability representations (even those created by disabled artists) has been dubbed “inspiration porn” by the disability community in the United States, Canada, United Kingdom, and Australia (to my knowledge). See Young, 2014. 13 For insider discussions of disability identity and culture the United States’ context, see Gill (1995); Longmore (2009); and Kuppers (2014). 14 My analysis if the four dance types is necessarily abridged for clarity and interdisciplinary relevance.
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Fig. 1. Ballerinas in rehearsal. Photo credit: Deposit Photos.
with innumerable others. A simple Google image search of the term “ballet” will pull up thousands of photos similar to the one I have chosen. The photo captures a line-up of four, white, lithe female dancers. The women are framed in the photo from the upper torso to the floor. They are wearing dark leotards, tulle tutus, light pink tights, and pink pointe ballet slippers. The women are standing next to each other in what appears to be a rehearsal studio with their left arms holding a barre and right arms at their sides. They are in seventh position en pointe, which means that they are standing on the toes of their slippers, one foot placed in front of the other with centered heels. This choreographic pose relies on the qualities of ballet that exclude physically disabled people and are easy to delineate.15 Ballet relies on perfection based on the standardization of body types, choreography appropriate to the form, and a narrow aesthetic that can be traced to fifteenth-century Italian Renaissance courts. Ballet is steeped in tradition and elitism, only available on a professional level to the most extraordinarily able-bodied dancer (Albright, 1997). Though many people train in ballet who do not have ideal “ballet bodies,” the focus of ballet training is on the correction of technique to achieve an ideal. To be sure, this ideal form is out of reach for almost everyone but impossible to even imagine for a physically impaired dancer who uses a wheelchair. Ballet companies that incorporate wheelchairusers exist, but I would argue that those companies are no longer doing ballet but are creating a new form.16 Ballet is considered a building block to other forms of dance, including experimental forms that offer more freedom of movement such as modern and contemporary. Professional dancers often begin their training in early childhood with ballet and use its vocabulary to communicate throughout their training and professional careers with other dancers and choreographers.17 My point is that
15
For a full discussion of disability and ballet, see Smith (2005). A good example of adapted ballet is Cleveland Dancing Wheels is a premiere physically integrated dance company in the United States that focuses on ballet for dancers who use wheelchairs. They are known for creating technique and vocabulary for wheelchair using ballet dancers that is used by other companies. The research group Dance Unstuck and its partners released an online manual about how to teach ballet to a wide diversity of dancers, including those with disabilities, based on a Universal Design model. See Unstuck (2018). 17 Even dancers who enter the profession through alternative means often end up taking ballet classes in later life so they can use the vocabulary to communicate with others in the field and as a form of training discipline. 16
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traditional, mainstream ballet — especially classical, professionally executed concert dance — is considered foundational and excludes disabled people whose involvement would be unreasonable and an undue burden to the fundamental nature of the form. For the point of this article’s argument, I am not claiming that classical, professional ballet needs to change. What I am doing, instead, is providing a clear instance in which a dance form is characterized by the very exclusiveness of its nature. For two of the dance types (physically integrated dance and new integrated dance), I explore the work of AXIS Dance Company, the premiere company in the United States that features collaborations between dancers with and without disabilities. At the core of AXIS’s mission is a commitment to social justice in their desire to “change the face of dance and disability.” In their mission statement that appears on their website, they explain that through their artistry, public engagement projects, advocacy work, and teaching, they model integration by bringing together disabled and nondisabled people as artists and as audience members. They have an international reputation as a contemporary dance company and work with the highest-level choreographers, most of whom are nondisabled. The organization has always had disabled people in leadership positions, though. Judith Smith served as artistic director since 1997 and passed the baton to Marc Brew in 2017; both Smith and Brew use power wheelchairs. (AXIS Dance Company, 2017). I am focusing on AXIS Dance Company here because their company’s mission and artistic practices focus explicitly on the integration of people with and without disabilities, which is consistent with the current practices of “community integration.” AXIS Dance Company’s repertoire most often includes disabled dancers who use power or manual wheelchairs, though they do include dancers with physical impairments who do not use wheelchairs. Most of their choreographers since 1997 have been nondisabled dance world luminaries (e.g. Bill T. Jones, Yvonne Rainer, and Victoria Marks) or dancers who acquired their impairments after their dance training (e.g. Marc Brew), though there are notable exceptions.18 I draw on AXIS’s work to discuss the ways in which dancers with and without disabilities appear on stage in relation to one another depending on whether the choreography seems related primarily to the way nondisabled dancers move (integrated dance) or to the way disabled dancers move (what I call new integrated dance). This distinction points to both the limitations and possibilities of physically integrated dance. These limitations are consistent with those of community integration and how it is practiced in the United States today. 5.3. Physically integrated dance Physically integrated dance certainly challenges all previous forms of dance, not just ballet, simply because disabled and nondisabled dancers are sharing the stage, diversifying possible choreographic choices. Dancers who use wheelchairs and their unique bodies, for example, offer endless possibilities for different stage tableaux, movement patterns, and body shapes than are possible when only normative “dance bodies” are present. Even with the addition of this endless variety, the overall choreography of physically integrated dance tends to be inventive within given parameters that are most often established by the way nondisabled people experience the world. As Albright (1997) notes, “Many of these dances [physically integrated] recreate representational frames of traditional proscenium performances, emphasizing the elements of virtuosity and technical expertise to reaffirm a classical body in spite of its limitations” (63–64) Fig. 2 is a 2017 AXIS publicity photo I analyze to show how the dynamic Albright describes can be the case. Because it is a publicity still, the image has been composed for a photograph and is not performance documentation, but nevertheless, it illustrates common elements of physically integrated dance compositions. It would be a gross oversimplification to apply this analysis to all of AXIS’s repertoire, but for now, I give my attention to the composition of the dancers’ bodies in this photo to show how the arrangement of bodies can be overdetermined by normativity, even when nondisabled dancers are in the minority. After I discuss this image, I describe live choreographic moments that tend to occur frequently in AXIS’s work. 18 It is unusual for a dancer or choreographer with an impairment since birth or childhood to be in the upper echelons of the dance world due to lack of training opportunities and exclusion from classes as students and even theaters where dance is presented (pre-ADA). See Gill and Sandahl (2009) for a study on barriers and facilitators to arts careers for Americans with Disabilities.
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Fig. 2. AXIS Dance Company, Malonga Casquelourd Center for the Arts, Oakland, 2017. Photo by David DeSilva. Dancers (left to right): Julie Crothers, Dwayne Scheuneman, James Bowen, Lani Dickinson (this is an official publicity photo available for publication, see http://www.axisdance.org/media-kit#press-photos)
This photo features four dancers who are diverse in multiple ways, unlike the dancers in the stock ballet photo. The group includes, from left to right, Julie Crothers (who appears to be a disabled white woman whose left arm ends around the elbow area), Dwayne Scheumeman (who appears to be a nondisabled black man); James Bowen (a wheelchair user who appears to be a white male), and Lani Dickinson (who appears to be an Asian woman whose left arm ends just below the shoulder area). They are posed outdoors on a flat, concrete surface in front of a colorful mural painted on a brick wall of musicians of color playing their instruments. The image is dynamic, with each dancer caught in the action of upward motion, their shadows cast beneath them. This publicity photo portrays the company as socially progressive, urban, and exciting, but at the same time, it features elements that delineate the aesthetic boundaries of physically integrated dance’s potential limits and breakthroughs. The composition of the image encourages comparison between the dancers’ bodies. Given that this image includes more disabled dancers than nondisabled dancers, normativity is not given value over disability overall, but the viewer’s eye is guided along a choreographic line that facilitates knowledgegathering of similarity and difference, normative and different. The viewer’s eye flows from left to right along the zig-zagged line created by the bodies’ angled limbs, torsos, and heads, which are fully available for view; each body is roughly equidistant from the next. As the eye follows the zig-zag line, points of commonality and points of difference gather emphasis. The line breaks somewhat when the eye follows a fully extended limb that ends unexpectedly, drawing attention to difference. It flows more readily along limbs that are normative. Given that all of the dancers’ arms are extended, the disabled female dancers’ shortened arm draws the viewer’s attention. Bowen, the wheelchair user, is the only dancer with both arms pointing downward: his upstage arm holds the rim of his chair’s wheel and his downstage arm is angled downward. He is tilted up on his upstage wheel, which is his variation of the theme of elevation executed by the other dancers’ elevation from the ground on normative legs. Bowen’s wheelchair position echoes the position of the dancer to his immediate left (Crothers), whose upstage foot is planted and downstage knee is raised off the ground. While the image does not ascribe value or stigma to any of the bodies, the composition seems to satisfy viewer curiosity with views of difference fully on display. Display of difference is aesthetically beautiful and at the same time problematic, given how audience members in the West have been conditioned to read disabled bodies in representation going back
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to the tradition of the freak show. I am in no way claiming that AXIS Dance Company is a freak show, but I am pointing out that viewing practices honed over centuries are difficult to shake. Bogdan (1998) explains that freak shows deployed the representational strategy of displaying physically anomalous people so that their differences were highlighted. Displaying a “giant” alongside a “dwarf” or a “bearded woman” alongside her hairless husband was a tactic to invite comparison and exaggerate difference. (206–233) When difference is readily available to the viewer with no impediments, the viewer can linger and stare unfettered. This publicity photo, while not a freak show artifact, deploys similar representational strategies. To clarify, I do not mean that making difference visible itself is automatically problematic, but it may unintentionally mollify audience curiosity, which can, in turn, unintentionally serve as a distraction from the work itself, especially when the display of difference encourages comparison. My evidence for this type of distracted audience reception comes from my personal experience of having been in many physically integrated dance audiences, both European and American, over the past twenty-five years, including AXIS Dance Company. Inevitability, during the performance, audience members will rifle through their programs or use their smart phones to search for information about the performers’ disability status or “cause” of impairment.19 They will speak audibly to one another about who has what diagnosis during the show or intermission. They will focus on these questions during audience talk-backs. During this hunt for information, audiences tend to miss the artistry of the performers’ work. Their search for the “disability story” reinforces a lifetime of conditioning by mainstream representation (e.g. the Hollywood movie) that this story will lead them to some sort of meaning relevant to the piece when it is, at best, unrelated background information to what they are seeing onstage. This viewing tendency has frustrated many disabled artists across media.20 In addition to how meanings suggested by choreographic line can be overdetermined by normalcy, the meanings we attribute to space can do the same. In Fig. 1, the flat, outdoor surface (consistent with flat, indoor stage flooring) necessarily restricts the choreographic space the dancer using the wheelchair can inhabit. Scheuneman, the dancer who uses the wheelchair, is depicted in three-quarter profile just left of center – a position of prominence that draws focus. The other dancers’ bodies emerge at angles away from him, making him the axel of a semi-circular pattern. He occupies a horizontal plane while the dancers with normative legs make use of vertical space by leaping, jumping, and lunging upwards on tiptoe. Culturally conditioned meanings associated with space can layer upon associations audiences have with wheelchairs in general. It can be difficult for audience members to dissociate what they have learned to associate with direction.21 The direction “up” is often a signifier for positive emotions like elation and “down” is often a signifier of negative emotions like defeat.22 Lakoff and Johnson (1980) discuss how directional orientation serves as metaphor for emotional state. (14–21) They explain that human beings’ conceptual systems are based in metaphor and therefore deeply embedded in our relationship to the world and to each other. Even when it is unintentional, directionally oriented metaphors of emotion are difficult to disassociate from a composition such as the one in this photo. If audiences already link a position lower to the ground with negative emotions, these feelings may augment negative emotions consistent with stereotypes ascribed to wheelchairs (confinement and defeat, for instance). Or, the audience may interpret the nondisabled dancer’s upward leaping as the “normal” way of performing elation and the disabled dancers’ choreography while seated an approximation (i.e. the wheelchair user raises his arms and tilts his head up while the nondisabled dancers leap with arms raised and a similarly tilted heads). Because the movement appears to be based on the movement vocabulary of legs that leap, the disabled dancer’s movement vocabulary may be considered adaptive or aspirational. Albright (1997) observes a similar reference to normalcy in physically
19 In disability community, we call this sort of interrogation the “what happened to you” story. Those of us with disabilities are subjected overtly to such questions frequently in public spaces. 20 See Gill and Sandahl (2009) for a discussion of how critics tend to focus on the “disability story” to the exclusion of other elements of art by disabled people. Albright discusses this tendency as well (64–67). 21 Albright discusses other tendencies to associate particular emotions to the “grotesque body” (73). 22 Lakoff and Johnson explain that not only are up and down associated with positive and negative emotion, they are also associated with physical health and disease, control and lack of control, high social status, low social status, good and bad, virtue and depravity.
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Fig. 3. Dancers Laurel Lawson and Alice Sheppard at a works-in-progress showing at the Maggie Allesee National Center for Choreography, 2017. Lighting and projection by Michael Maag. Photo credit: Chris Cameron, courtesy of MANCC.
integrated dance in that “the choreography or movement style can emphasize images resonant of the classical body” (74). Scheuneman is lifting his arms and raising his head, but he is seated. If we were to remove the three leaping dancers from the photo, the seated dancer’s movement would not be a drastic counterpoint, but an image of its own which would be more liberally open to interpretation. 5.4. Disability dance I contrast physically integrated dance, which by definition includes both disabled and nondisabled dancers, to the third type — disability dance — which is what I call dance exclusively performed by disabled people (and most often composed by disabled choreographers). Fig. 3 is from a work-in-progress showing of Kinetic Light’s Descent from Beauty, which premiered in 2017. Descent is choreographed and performed by Alice Sheppard in collaboration with dancer Laurel Lawson. Both women are wheelchair users. This piece fully draws on disability experience in terms of sensory perception, movement vocabulary, and social commitments, creating a new form of disability dance. To begin with, the piece features what Sheppard calls on the company website “a unique, architectural stage that acts as a partner in the choreography and storytelling.” Sheppard worked closely with designers Sarah Hendren, Yevgeniya Zastavker, and students at Olin College to create a large ramp that fills the stage on which the dancers perform both in and out of their chairs. The ramp, back wall, and dancers’ bodies are continually illuminated by shifting images and light by designer Michael Maag, who is a wheelchair user himself. Sheppard explains that the ramp’s design concept comes from the sensorial experiences of moving through daily life using a wheelchair. Phenomenologically, wheelchair users know how gravity, centrifugal force, and uneven surfaces shape the experience of space, not only aesthetically, but also, emotionally. Descent’s staging on a giant, twisting ramp asks audiences to consider the aesthetic possibilities of an architectural feature that is often disrespected as an access “add-on.” Wheelchair users rely on ramps for access, and mainstream culture relegates ramps to separate entrances. Ramps are often unattractive and clearly not part of an original design. Historical buildings can reject the request for a ramped entrance by declaring it an unreasonable threat to “architectural integrity,” or a financial “undue burden.” For those of us in the audience who use wheelchairs, the full-stage presence of a
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ramp, not as an afterthought, but as an aesthetically engaging centerpiece puts our experiences into relief as generators of creativity. This ramp is vertiginous, treacherous, gorgeous, and thrilling – all at the same time. It is completely unreasonable. It is a total burden. It is ADA non-compliant by choice, not by neglect. And non-compliance by choice is what makes the ramp so compelling. Sheppard and her collaborators designed a setting that would take advantage of insider knowledge of how wheelchair users experiences space, time, partnering, and gravity. Descent’s stage floor is a multi-level, multi-angled landscape as opposed the flat surface on which most physically integrated dance is set (as in AXIS’s publicity still that I analyzed). The ramp’s design allows the dancers to make full use of vertical, horizontal, and angled planes, whereas in physically integrated dance, wheelchair users most often occupy horizontal planes, and nondisabled dancers make full use of both horizontal and vertical planes. In Descent, disabled bodies inhabit the stage in relation to one another; there is no nondisabled dancer to serve as a counterpoint in the visual field. Sheppard and Lawson move in and out of their chairs using the floor, perch their chairs on the ramp’s edge, slither underneath and around the ramp, take turns lifting each other, and fold their bodies and their wheelchairs around one another in intricate three-dimensional puzzles. Their dance encourages audiences to consider the give and take of weight, the cooperation, the beauty of, and the socio-political relationship between two wheelchair-using women of different races (one black and one white). While both dancers use wheelchairs, their bodies are different from one another in terms of shape and the ways in which their different impairments affect how they mobilize their torsos, heads, and limbs. The choreography pushes gender and sexuality boundaries as two femalepresenting bodies move in intimate and erotic duets. Their piece centers disabled bodies without a reference to able-bodiedness. Throughout the piece, different aspects of the women’s identities draw focus. At times, for instance, a dynamic informed by race becomes evident, or queer sexuality is foregrounded. Though these kaleidoscopic identity shifts may also occur in physically integrated dance, the disabled/nondisabled identity tends to overshadow them. In disability dance, these differences have more room to play out because disability is visually apparent, eliminating distraction of determining who does and does not have an impairment. In addition to Descent’s aesthetic innovations onstage, Sheppard extends the attention to ramps in the company’s online activism. On the Kinetic Light website, Sheppard explains that the piece “ask(s) new questions about social justice.” Sheppard posts blog entries to the Kinetic Light website on Descent’s aesthetic choices in relation to the ramp, and she hosts twitter chats about issues related to the piece. For instance, Sheppard posts questions about architectural access on Instagram and Twitter, encouraging her followers to create a collaborative critique of ramps. Using the hashtag #rampfails, followers can upload the worst examples of ramps that are non-compliant with the ADA, dangerous ramps, illogical ramps, ugly ramps, and so on. As the collection of imagery accumulates, their creation of a ludicrously non-ADA-compliant ramp born from the imagination and the way their bodies use wheelchairs becomes a clear act of resistance to the ways in which ramps fail us in daily life. The contrast between the way access to ramps oppresses disabled people and the way Descent’s ramp liberates movement is affirming and liberating. 5.5. New integrated dance The final type of dance I discuss in this article maintains the centrality of disability phenomenology in its aesthetic, while including both disabled and nondisabled dancers. I consider this dance type, which I call “new integrated dance,” an example of how interaction with disability culture on its own terms can offer ways to re-imagine the mainstream.23 Fig. 4 is from the duet called One Breath is an Ocean for a Wooden Heart (2007) commissioned by AXIS Dance Company and Alliger Arts. Dancers Lisa Bufano and Sonsherée Giles, who were both AXIS company members, choreographed and performed the piece. While AXIS would likely categorize this piece as simply “physically integrated dance,” I think
23 I am calling this work “new integrated dance” as opposed to “new physically integrated dance” because I would classify the former as capable of including people with sensory impairments, mental health differences, and intellectual disabilities (along with other non-apparent disabilities) and the latter specifically focuses on those with physical impairments.
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Fig. 4. One Breath is an Ocean for a Wooden Heart. Choreographed/created by: Lisa Bufano, Sonsheree Giles and Jerry Smith. Performed by: Lisa Bufano and Sonsheree Giles. Music created and performed by: Jerry Smith. Commissioned by AXIS Dance Company in association with Alliger Arts.
work such as One Breath does something new because the integration of disabled and nondisabled dancers happens in a form that begins with the impaired body to which the nondisabled body adapts instead of the other way around. The choreography of One Breath centers on the unique bodily configuration and aesthetics of Bufano, a disabled dancer. Bufano, who died in 2013, was a multi-media performance artist who had partial amputations to both of her legs and parts of her hands. Her work often delved into the transmutability of the disabled body by exploring permutations of her own. For example, she played with different prosthetic limbs for the ways in which they enabled specific movement and aesthetic qualities. She also performed without using any prosthetics. She is most well known for the distinctive prosthetic stilts formed out of table legs. These stilts inform the central aesthetics of One Breath. Similar how Descent’s ramp emerged from wheelchair users’ experiences of moving through the world, One Breath emerged from Bufano’s innovative way of engaging with her environment as an amputee. While Descent features two women who use wheelchairs in daily life, One Breath features one woman who uses prosthetics in daily life (Bufano) and one woman does not (Giles). In One Breath, both dancers perform the entire dance on stilts; it is not necessarily clear to the audience, though, that one is disabled and the other is not because their costumes and stilts are virtually the same. The invitation to comparison of disabled and nondisabled bodies is subtle and therefore backgrounded, which encourages the audience to focus on the dance itself. The two dancers become one as they are mutually “transformed through a wide range of imagery: animated furniture, magical toys, 8-legged insect, 4-legged gazelle, and 2-legged birds. The effect is eerie otherworldliness” (Giles). As the disabled and nondisabled dancers move together in this series of transformations, they become “integrated” into a new form that is possible because the choreography began with disability experience and incorporated a nondisabled dancer, rather than the other way around. For me, the shift of origin to disability experience is what makes this work “new integrated dance.” Bufano’s disability perspective established the way both dancers move; her way of being in the world even changed the perspective on what constitutes arms and legs. On her website, Giles writes that the piece was “informed by the relationship between physical transformation and identity [. . .] as two dramatically different bodies navigate a movement and sound landscape that is both enabled and constrained by their use of wooden stilts.” Due to feeling
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“groundless,” the two dancers remained “physically connected in some way to each other throughout the piece, until the end when they part.” In Fig. 4, Giles is on all fours, with her legs and arms elongated by the stilts. Bufano is kneeling with the long stilts. The women are connected at the forehead. Bufano appears to be using Giles’s body as leverage to rise up on all fours. Both thin, white, female-appearing dancers wear the same costume which consists of a white halter top, ruffled leggings, with similarly ruffled sleeves on their arms. While the two have different bodies, one disabled and one not, their sameness is emphasized by their matching costumes and constant physical connection. This connectedness seems an apt metaphor for the new integrated dance that I am articulating here – the interdependence of two equal forces that rely on one another to balance togetherness with separateness. While Fig. 2 and Fig. 4 are both pieces that AXIS Dance Company presented and include both disabled and nondisabled people, I argue that One Breath’s movement that originates in and clearly references a disabled person changes the overall conception of what integration can look like. New integrated dance can model for us what community integration based in the generative experience of disability might become as something we have yet to imagine. 6. Conclusion The arts can provide ways of imagining how we might re-think community integration, not only through the representations artists create, but through the art-making process and art presenting processes themselves. When mainstream dance meets disability dance in new integrated dance, the resulting form does not retain traces of an “original” that has been adapted to a population of disabled people. Instead, a new form emerges that is only possible because the creative process centers disability phenomenology as generative in its own right. It is this emergence that articulates how disability can transform the mainstream into something new. As we continue to explore what community integration could mean, let us go beyond accommodation, which assumes we start with mainstream and flex to include disability. Instead let us start with disability’s unreasonableness and burdensomeness to significantly remodel the mainstream. Segregation need not always be a lesser choice. Instead, let us consider how disability-centric spaces could be a chosen staging ground for what is possible. When we develop and grow the mainstream and disability-centric spaces at the same time, we provide new ways of thinking about what change can be when we are integrated on equal terms. Disclosure of interest The authors declare that they have no competing interest. References Alter. (2017). Lausanne conference. [http://www.alter-asso.org/lausanne-conference-2017/?lang=en] ADA. (2017). Great lakes center. [http://www.adagreatlakes.com/ADA/?title=3] ADA Update: A primer for state and local governments. U.S. Department of Justice Civil Rights Division. https://www.ada.gov/ regs2010/titleII 2010/title ii primer.html. Albright, A. C. (1997). Choreographing difference: The body and identity in contemporary dance. Middletown, CT: Wesleyan University Press. AXIS Dance Company. (2017). Retrieved November 25, 2017, from http://www.axisdance.org/. Bodies of Work, 2017, from: https://ahs.uic.edu/disabilityhumandevelopment/community-partners/bodies-of-work/. Bogdan, R. (1998). Freak show: presenting human oddities for amusement and profit. Chicago: Univ. of Chicago Press. Code of the Freaks – It’s not all feel good films. (2017). Retrieved November 25, 2017, from http://codeofthefreaks.com/. Dance Unstuck, 2018, from: http://danceunstuck.co.uk/. Gill, C. (1995). A psychological view of disability culture. Disability Studies Quarterly, 1–4. Gill, C. J., & Sandahl, C. (2009). Arts career outcomes and opportunities for americans with disabilities: A qualitative study. [http://www.artsedge.kennedy-center.org/2009NEASummit/papers.html] Kuppers, P. (2014). Disability culture. Studying Disability Arts and Culture, 56–74. Lakoff, G., & Johnson, M. (1980). Metaphors we live by. Chicago: Univ. of Chicago Press. Longmore, P. (2009). The second phase: from disability rights to disability culture. In Why I burned my book. pp. 215–224. Philadelphia: Temple University Press. Mainstream. (2017). Oxford Living Dictionary. [https://www.en.oxforddictionaries.com/definition/mainstream] Sandahl, C., & Auslander, P. (2005). Bodies in commotion: disability & performance. Ann Arbor: University of Michigan Press.
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Sandahl, C. (2005). Disability arts. In Gary Albrecht (Ed.), Encyclopedia of disability (pp. 405–406). Thousand Oaks, CA: Sage. Sandahl, C. (2009). Disability art and artistic expression. In S. Burch (Ed.), Encyclopedia of American disability history (pp. 246–268) [Facts on File]. Smith, O. (2005). Shifting Apollo’s frame: challenging the body aesthetic in theater dance. In C. Sandahl, & P. Auslander (Eds.), Bodies in commotion: disability and performance (pp. 73–85). Ann Arbor: University of Michigan Press. Snow, K. (2018). Mainstreaming, integration. In Inclusion: is there a difference?. [https://www.disabilityisnatural.com/ incl-mainstream-integration.html] Young, S. (2014). Stella Young. [https://www.ted.com/speakers/stella young]
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Research paper
Disability art and culture: A model for imaginative ways to integrate the community Pratiques artistiques et culturelles des personnes handicapées : un modèle imaginative pour intégrer la communauté Carrie Sandahl ∗ University of Illinois, Chicago, USA
a r t i c l e
i n f o
Article history: Available online 19 April 2018
Keywords: Disability art Disability culture Physically integrated dance
a b s t r a c t This article suggests a turn to disabled people’s formations of disability culture, as expressed in the arts, for new ways to imagine community integration. As I look to the arts, I examine not only the representations disabled artists create, but the art-making and arts-presenting processes themselves. I illustrate this argument by analyzing innovations in the integration of people with disabilities in professional concert dance in two American companies: AXIS Dance Company and Kinetic Light. © 2018 Association ALTER. Published by Elsevier Masson SAS. All rights reserved.
r é s u m é Mots clés : Pratiques artistiques des personnes handicapées Culture des personnes handicapées Danse intégrée
Cet article rend compte d’un changement dans la formation des personnes handicapées à la « culture du handicap », telle qu’elle s’exprime dans les arts, pour mettre au jour de nouvelles fac¸ons d’imaginer l’« intégration communautaire ». Lorsque je regarde les arts, j’analyse non seulement les représentations que les artistes handicapés créent, mais également les processus d’élaboration/création artistique ainsi que les processus de présentation et de diffusion de leurs œuvres. J’illustre ensuite mon propos
∗ Correspondence. 1640 W. Roosevelt Rd (mc 626), Chicago, IL 60608-6904, USA. E-mail address: [email protected] https://doi.org/10.1016/j.alter.2018.04.004 1875-0672/© 2018 Association ALTER. Published by Elsevier Masson SAS. All rights reserved.
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à partir de l’étude des innovations réalisées, en termes d’intégration des personnes handicapées, dans les spectacles professionnels de danse de deux compagnies américaines : AXIS Dance Company et Kinetic Light. © 2018 Asso´ ´ ciation ALTER. Publie´ par Elsevier Masson SAS. Tous droits reserv es.
1. Introduction For the 2017 ALTER conference at the University of Lausanne, I was invited to give a keynote lecture related to the conference theme, which was “Disability, Recognition and ‘Community living’: Diversity of practices and plurality of values.”1 As a disabled scholar and artist who teaches disability studies courses at the University of Illinois at Chicago, I thought carefully about what, at this point in the development of our field, a disability art and culture perspective might add to our conversations about how people with and without disabilities live together. What the diverse international disability studies community shares is a profound commitment to social justice for people with disabilities. Though we share this commitment, how we enact change and what models we hold forth to guide our efforts are specific to our cultural contexts and academic home disciplines.2 For the keynote and this expanded version, I took our shared commitment for social justice as a given, but I interrogated what we mean by community living. What does community living look like? In this article, I suggest a turn to disabled people’s formations of disability culture, as expressed in the arts, for new ways to imagine community living.3 As I look to the arts, I examine not only the representations disabled artists create, but the art-making and arts-presenting processes themselves. I illustrate this argument by analyzing innovations in the integration of people with disabilities in professional concert dance in two American companies: AXIS Dance Company and Kinetic Light.4 2. Background integration In the United States, the term “community living” refers to people with and without disabilities inhabiting a shared community space, but the extent to which they are integrated or segregated varies. Community living includes domains such as employment, housing, recreation, and education. Consider the following scenarios. People with disabilities might be employed at a sheltered workshop in the larger community, but that workshop would be still be a segregated environment. Disabled people might be living in a small group home and taken on excursions by staff for shopping and recreation in the larger community, but more so as visitors than fully fledged members.5 Disabled children might attend their neighbourhood public school, but they may spend much of their day in “resource rooms” in which they have no interaction with their nondisabled peers. In each domain,
1 I want to thank Patrick Devlieger, Anne Marcellini, and Laurent Paccaud, for their invitation on behalf of ALTER and their organization of my visit. 2 The conference website provided this provocation that guided my understanding: “Today, many countries have signed the United Nation Convention of the Rights of Persons with Disabilities. They try as well, with varying success, to guide policy and practices, and to transform social perceptions and participation of people with special needs. However we can see that the models of ‘living together’ differ, depending on institutional contexts and communities. The 2017 conference of ALTER proposes a better understanding of the diversity of practices and experiences of disability in different areas (districts, counties, regions, nations) marked by contrasted socio-historical, political and cultural configurations (Alter, 2017).” 3 I define disability art and culture more fully in Section 4. 4 I purposely toggle between person-first language (e.g. people with disabilities) and identity-first language (e.g. disabled person) as an imperfect solution to the problem that there is no general agreement about preferred terminology. My choice to use both addresses the preferred nomenclature of different disability constituencies in the United States. Personally, I prefer identity-first language as do most disability activists and disability studies scholars in the humanities, which is why I use it most often. I use the term “impairment” to refer to a disabled person’s primary physical, mental, or sensory difference. In the arts, our bodies are our means of expression, and I describe the configuration of people’s bodies, which some may find uncomfortable, but doing so is necessary to describe and analyze aesthetic choices. 5 The characterization of disabled people as “visitors” in this context comes from Snow (2018).
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the larger community does little to change its structures. Instead these domains flex to incorporate disabled people as segregated individuals or groups. In these scenarios, it is unclear how much choice a disabled person may have in terms of whether they are integrated or segregated, especially if they are minors or if they have cognitive or psychiatric disabilities. In 2016, the American Association on Intellectual and Developmental Disabilities (AAIDD) and the Association of University Centers on Disabilities (AUCD) issued a joint statement on community living that allows for segregated settings with varying levels of support (such as small group homes) but emphasizes that disabled people must be able to choose from the widest range of options: Community living and participation means being able to live where and with whom you choose; work and earn a living wage; participate in meaningful community activities based on personal interests; have relationships with friends, family and significant others; be physically and emotionally healthy; be able to worship where and with whom you choose (if desired); have opportunities to learn, grow and make informed choices; and carry out responsibilities of citizenship such as paying taxes and voting.6 Choosing whether or not one participates in segregated or integrated settings depends on the person’s socio-economic status, age, and impairment type. The efficacy, ethics, and necessity for segregated settings is beyond the scope of this article, but I raise the issue of choice because it is central to my argument. Disabled people should have a choice about how we live our lives in the community, and sometimes that choice might be a segregated environment. The term “community integration,” instead of community living, is often used in the U.S. to emphasize the role of choice by disabled consumers and focuses on disabled and nondisabled people living, working, and playing side-by-side. My work is informed by this integration model, which is a guiding principle of the Americans with Disabilities Act (ADA, 2010): The integration of people with disabilities into the mainstream of American life is a fundamental purpose of the ADA. Historically, public entities provided separate programs for people with disabilities and denied them the right to participate in the programs provided to everyone else. The ADA prohibits public entities from isolating, separating, or denying people with disabilities the opportunity to participate in the programs that are offered to others. Programs, activities, and services must be provided to people with disabilities in integrated settings. The ADA neither requires nor prohibits programs specifically for people with disabilities. But, when a public entity offers a special program as an alternative, individuals with disabilities have the right to choose whether to participate in the special program or in the regular program [ADA (2017) Update: p. 2]. Though this principle includes the right for disabled people to choose between a special (i.e. segregated) program and a regular program, the ADA includes two exceptions to that choice: • when “different treatment [. . .] is necessary in order for a person with a disability to participate in a civic activity,” and; • “when it simply is not possible to integrate people with disabilities without fundamentally altering the nature of a program, service, or activity.” (U.S. Department of Justice, p. 3).7 Even with the ADA’s express preference and focus on integration, these exceptions point to the limits of the law and its manifestation in community integration. Much like “community living,” “community integration” is limited by the structures and capacities of “mainstream of American life.” 3. A two-pronged approach In the spirit of recalibrating segregation and integration of disabled people into the American mainstream, I take a two-pronged approach in the work that I do. I work toward access to the mainstream,
6 Their statement goes on to explain the unfortunate situation that “many people with IDD also may still live in large, segregated congregate places including large group homes (with 7 or more people living there), residential programs located on campuses, and state and private institutions, which could limit community inclusion.” 7 Thank you to the Director of the Great Lakes ADA Center, Robin Jones, and the Executive Director of Equip for Equality, Zena Naditch, for their assistance in understanding the guiding principle of integration in the ADA and its exceptions.
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while at the same time paying attention to and putting resources toward self-chosen, disability-centric spaces. When I use the term “disability-centric,” I am referring to segregated settings primarily — but not exclusively — run by disabled people. I find that these settings allow us to develop what is unique to disability experience. Our value as disabled people includes the powerful potential to generate alternatives to the mainstream based on such experience. I enact this two-pronged approach in my role as Director of an organization called “Bodies of Work: A Network of Disability Art and Culture” out of the University of Illinois at Chicago’s Department of Disability and Human Development. Bodies of Work is a consortium of organizations (e.g. museums, theaters, non-profits, foundations) and individual artists throughout the Chicagoland area who contribute to the growth of disability art and culture. Since 2006, Bodies of Work has held two international disability art festivals in Chicago, and we produce or co-produce a season of up to 30 events per year. These events include, for example, an annual series co-produced with Access Living, Chicago’s influential Center for Independent Living that advocates for disabled people’s civil rights. The series includes a disability culture cabaret called Outtakes, an integrated dance concert called Counterbalance, and a music/social dance party called Battle of the Bands. A sampling of other activities includes an artist residency program with the foundation 3Arts, lectures and panel discussions, professional development workshops, and audience development initiatives with the Museum of Contemporary Art Chicago. Our mission is to serve as a catalyst for the development of disability art and culture that illuminates the disability experience in new and unexpected ways. (Bodies of Work, 2017) To enact this mission, we center our efforts on the creation of new work by disabled artists that generally defies the capacity of mainstream arts institutions as well as the aesthetic traditions of specific media and genres. This defiance, I claim, is our greatest asset, but it also leads us to a conundrum: how to present work in mainstream venues that are ill-equipped to integrate artists with disabilities in terms of access, accommodations, and curatorial practice. To address this conundrum, we must advocate for the integration of both artists and audiences with disabilities to build capacity in the arts infrastructure. Meaningful integration requires fundamental changes that impact every aspect of an arts organization – from seating configurations in a theater, to marketing strategies, to budgeting for access and accommodations, to staff trainings, to making artistic and curatorial choices. I have learned through directing Bodies of Work seemingly incompatible lessons about how to integrate people with and without disabilities in the mainstream arts world. The first is that the mainstream arts world is resistant to fundamental change beyond minimal compliance to laws such as the Americans with Disabilities Act, and even minimal compliance cannot be assumed.8 Most accommodations are provided for audience members under the assumption that disabled people are consumers rather than producers of the arts. The second seems counterintuitive: Disabled artists tend to succeed in the mainstream when their work exceeds rather than meets mainstream mores and expectations. The break-through work of disabled artists is that which most tends to challenge, not replicate, mainstream traditions. The third is a lesson that I find most relevant here: when the mainstream arts world recognizes the innovation of disability-centric art, it is most amenable to significant change. Without experiencing disabled artists’ differences, the mainstream status quo may not be able to imagine the ways it could be transformed. 4. The three lessons I want to unpack these lessons before illustrating them through examples from dance. As I discussed earlier in my discussion of the ADA, the law has limitations that stifle radical change. The commonsense definition of the term “mainstream” sows the seeds of its own limitations. The English online Oxford Living Dictionary defines “mainstream” as “the ideas, attitudes, or activities that are shared by most people and regarded as normal or conventional” (Mainstream, 2017). This definition relies on the
8 In this article, I include arts organizations that consider themselves cutting-edge and experience as “mainstream”. These organizations tend to follow similar organizational structures and architectural constraints as their conservative peers. And while they may be progressive, their actions toward including disabled people tend to be minimal. Sometimes, they are even more difficult to convince to put resources into access and accommodations because their budgets tend to be very limited and are more easily exempted from requirements to do so under the Americans with Disabilities Act.
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centrality of “normalcy” and “convention,” which are both terms that exclude disabled people by denotation. As long as the mainstream is the assumed norm of public life, its structures remain intact and incapable of changing significantly enough to incorporate disabled people in meaningful ways, relegating many of us to the margins. Disabled peoples’ creative potential to reshape the mainstream remains largely untapped. The ADA makes promises that have yet to be fulfilled. The ADA applies to many mainstream arts organizations under Title III, which covers “Places of Public Accommodations,” including for-profit and non-profit entities. Despite the significant advances made toward providing access to mainstream public life under the ADA, limitation to further advancement is built into the legislation itself. This limitation is due to a gaping loophole, which is that an accommodation must be “reasonable” and not present an “undue burden.” Consider the following excerpt from Title III: [. . .] entities must make reasonable modifications to their policies, practices, and procedures that deny access unless the modification would fundamentally alter the nature of the goods or services provided. When necessary, public accommodations are required to provide auxiliary aids, such as Braille material, to ensure effective communication unless it would cause an undue burden for the public accommodation. (ADA Great Lakes Center, 2017). Disabled peoples’ requests for modifications, then, must be “reasonable” and must not present “undue burden.” This definition begs the question of whose reason determines what is and is not acceptable, and whose reason determines the threshold of what is considered an undue burden. Whose reason determines how public and private dollars are spent to make our world meaningfully accessible to the full range of human variation? It is not a stretch to claim that the concept of “reason” itself is ableist, which is to say that reason is based on nondisabled people’s ways of being in the world.9 I offer that disabled peoples’ unreasonableness and burdensomeness are sources of ingenuity. They present generative challenge to ableist social formations. Disabled people’s accommodations often do change the fundamental nature of goods, services, buildings, and art forms – ultimately, any domain in which people with significant impairments appear or have yet to appear. Disabled people have creatively, and artfully, generated change through their unique ways of being in the world. To create space in which disabled people can generate creative solutions to mainstream barriers, I believe we need to maintain our chosen, disability-centric space where disabled people, along with nondisabled allies, can be together under the leadership and terms of disabled people, as unreasonable and as burdensome as those terms may be. Looking again at the ADA, it is assumed that integration starts with the mainstream, which makes accommodations to include disabled people. What if we challenge that assumption by starting integration efforts in a segregated space instead? With these explanations in mind, I want to re-pack the three lessons. I offer that we balance our efforts at fostering integration in the mainstream with efforts at cultivating the richness of disabilitycentric spaces. When we focus on disabled peoples’ innovation, the mainstream begins to take notice. The mainstream and the disability-centric spheres begin to overlap and blur; they innovate and integrate, creating something fundamentally new. 5. Defining disability art To understand how disability art is a generative source from which alternative ways to integrate may spring, I explore here some of its fundamental tenets (Sandahl, 2005, 2009; Sandahl and Auslander, 2005). These tenets guide the choices Bodies of Work makes in its programming. I further explicate and illustrate these tenets through the example of dance that follows this section. Disability art mines the disabled body, mind, and senses for creative insight. Instead of adapting to the way a mainstream art form has been created with standardized bodies particular to it, disability art starts with disability experiences and disabled bodies just as they are.10 Disability art reflects
9 By “ableism”, I mean active and passive forms of discrimination against disabled people, disability oppression, and structures of exclusion (e.g. architecture, the English language, and social policies). Ableism also includes the unacknowledged assumption that society is organized around able-bodiedness. 10 Artists associated with Bodies of Work must self-identify as a disabled people (or people with disabilities) and be willing to discuss publically how their work contributes to disability art and culture.
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these experiences and bodily configurations, either in content or form. In other words, the artwork’s content may be “about” disability explicitly or its form may be influenced by impairment implicitly. For example, a painting may not appear to be about disability in content (e.g. a landscape) but the painting might retain traces of impairment in form (e.g. brushstrokes of paint created by a brush held in the mouth rather than the hand). Disability art is created by and for disabled people, not merely about disabled people, and is accessible. (e.g. portraits of disabled people would not be exhibited on the second floor of a no-elevator building). Though the work is presented to all audiences, disability art does not feel compelled to serve a consciousness-raising lesson, unlike mainstream art featuring disability such as Hollywood movies.11 When these movies feature disabled characters, they are geared toward teaching nondisabled characters transformative lessons about themselves. These nondisabled characters serve as metonyms for mainstream society itself. Disability art rejects its interpellation to didacticism, explores the disability experience in and of itself, rather than serving as an object lesson in kindness, for example.12 Furthermore, disability art intersectional, informed by every other aspect of identity such as race, class, gender, and sexuality. And finally, disability art contributes to the deliberate building of disability culture, which is an expression of disability community values and aesthetics whether in the arts, activism, or daily life (e.g. interdependence and self-determination rather than the typical American notion of independence).13 5.1. Extended example: disability and dance Taking into account the above definition of disability art, I apply it to an extended example to show how these tenets can move from disability-centric art space to the mainstream, re-shaping the mainstream along the way. These tenets can be applied across media (e.g. theater, painting, poetry, and film), but I focus on dance in this article because it most directly illustrates what happens when disability generates alternatives to a medium in both content and form.14 I compare and contrast four types of dance to make my case here: • • • •
mainstream dance; physically integrated dance; disability dance, and; new integrated dance (the third and fourth are terms of my coinage).
For each example, I will do a close reading of an image that typifies the aesthetics of each one of these four types, focusing on the composition of bodies in space, the scenography, and costumes. I supplement my reading of the static image with analysis of key choreographic moments, and I contextualize my analyses with artist statements and promotional materials, especially as they relate to disability activism. 5.2. Mainstream dance: ballet The first type of dance can be illustrated in the most mainstream dance form in the Western canon: ballet. I will keep my description and analysis of this type of dance brief since I am delineating its basic features as means of setting a base line comparison for the other three disability-related dance types. I chose a stock photo to illustrate ballet’s basic features (Fig. 1). The nature of a stock photo is that it is generic, which is fitting because ballet is so standardized that I could easily swap this photo out
11 I am currently working on a feature-length documentary film titled Code of the Freaks due to premiere in the summer of 2018. Collaborators include Susan Nussbaum, Salome Chasnoff, Aly Patsavas, and Jerzy Rose (Code, 2017). 12 The didacticism of mainstream disability representations (even those created by disabled artists) has been dubbed “inspiration porn” by the disability community in the United States, Canada, United Kingdom, and Australia (to my knowledge). See Young, 2014. 13 For insider discussions of disability identity and culture the United States’ context, see Gill (1995); Longmore (2009); and Kuppers (2014). 14 My analysis if the four dance types is necessarily abridged for clarity and interdisciplinary relevance.
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Fig. 1. Ballerinas in rehearsal. Photo credit: Deposit Photos.
with innumerable others. A simple Google image search of the term “ballet” will pull up thousands of photos similar to the one I have chosen. The photo captures a line-up of four, white, lithe female dancers. The women are framed in the photo from the upper torso to the floor. They are wearing dark leotards, tulle tutus, light pink tights, and pink pointe ballet slippers. The women are standing next to each other in what appears to be a rehearsal studio with their left arms holding a barre and right arms at their sides. They are in seventh position en pointe, which means that they are standing on the toes of their slippers, one foot placed in front of the other with centered heels. This choreographic pose relies on the qualities of ballet that exclude physically disabled people and are easy to delineate.15 Ballet relies on perfection based on the standardization of body types, choreography appropriate to the form, and a narrow aesthetic that can be traced to fifteenth-century Italian Renaissance courts. Ballet is steeped in tradition and elitism, only available on a professional level to the most extraordinarily able-bodied dancer (Albright, 1997). Though many people train in ballet who do not have ideal “ballet bodies,” the focus of ballet training is on the correction of technique to achieve an ideal. To be sure, this ideal form is out of reach for almost everyone but impossible to even imagine for a physically impaired dancer who uses a wheelchair. Ballet companies that incorporate wheelchairusers exist, but I would argue that those companies are no longer doing ballet but are creating a new form.16 Ballet is considered a building block to other forms of dance, including experimental forms that offer more freedom of movement such as modern and contemporary. Professional dancers often begin their training in early childhood with ballet and use its vocabulary to communicate throughout their training and professional careers with other dancers and choreographers.17 My point is that
15
For a full discussion of disability and ballet, see Smith (2005). A good example of adapted ballet is Cleveland Dancing Wheels is a premiere physically integrated dance company in the United States that focuses on ballet for dancers who use wheelchairs. They are known for creating technique and vocabulary for wheelchair using ballet dancers that is used by other companies. The research group Dance Unstuck and its partners released an online manual about how to teach ballet to a wide diversity of dancers, including those with disabilities, based on a Universal Design model. See Unstuck (2018). 17 Even dancers who enter the profession through alternative means often end up taking ballet classes in later life so they can use the vocabulary to communicate with others in the field and as a form of training discipline. 16
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traditional, mainstream ballet — especially classical, professionally executed concert dance — is considered foundational and excludes disabled people whose involvement would be unreasonable and an undue burden to the fundamental nature of the form. For the point of this article’s argument, I am not claiming that classical, professional ballet needs to change. What I am doing, instead, is providing a clear instance in which a dance form is characterized by the very exclusiveness of its nature. For two of the dance types (physically integrated dance and new integrated dance), I explore the work of AXIS Dance Company, the premiere company in the United States that features collaborations between dancers with and without disabilities. At the core of AXIS’s mission is a commitment to social justice in their desire to “change the face of dance and disability.” In their mission statement that appears on their website, they explain that through their artistry, public engagement projects, advocacy work, and teaching, they model integration by bringing together disabled and nondisabled people as artists and as audience members. They have an international reputation as a contemporary dance company and work with the highest-level choreographers, most of whom are nondisabled. The organization has always had disabled people in leadership positions, though. Judith Smith served as artistic director since 1997 and passed the baton to Marc Brew in 2017; both Smith and Brew use power wheelchairs. (AXIS Dance Company, 2017). I am focusing on AXIS Dance Company here because their company’s mission and artistic practices focus explicitly on the integration of people with and without disabilities, which is consistent with the current practices of “community integration.” AXIS Dance Company’s repertoire most often includes disabled dancers who use power or manual wheelchairs, though they do include dancers with physical impairments who do not use wheelchairs. Most of their choreographers since 1997 have been nondisabled dance world luminaries (e.g. Bill T. Jones, Yvonne Rainer, and Victoria Marks) or dancers who acquired their impairments after their dance training (e.g. Marc Brew), though there are notable exceptions.18 I draw on AXIS’s work to discuss the ways in which dancers with and without disabilities appear on stage in relation to one another depending on whether the choreography seems related primarily to the way nondisabled dancers move (integrated dance) or to the way disabled dancers move (what I call new integrated dance). This distinction points to both the limitations and possibilities of physically integrated dance. These limitations are consistent with those of community integration and how it is practiced in the United States today. 5.3. Physically integrated dance Physically integrated dance certainly challenges all previous forms of dance, not just ballet, simply because disabled and nondisabled dancers are sharing the stage, diversifying possible choreographic choices. Dancers who use wheelchairs and their unique bodies, for example, offer endless possibilities for different stage tableaux, movement patterns, and body shapes than are possible when only normative “dance bodies” are present. Even with the addition of this endless variety, the overall choreography of physically integrated dance tends to be inventive within given parameters that are most often established by the way nondisabled people experience the world. As Albright (1997) notes, “Many of these dances [physically integrated] recreate representational frames of traditional proscenium performances, emphasizing the elements of virtuosity and technical expertise to reaffirm a classical body in spite of its limitations” (63–64) Fig. 2 is a 2017 AXIS publicity photo I analyze to show how the dynamic Albright describes can be the case. Because it is a publicity still, the image has been composed for a photograph and is not performance documentation, but nevertheless, it illustrates common elements of physically integrated dance compositions. It would be a gross oversimplification to apply this analysis to all of AXIS’s repertoire, but for now, I give my attention to the composition of the dancers’ bodies in this photo to show how the arrangement of bodies can be overdetermined by normativity, even when nondisabled dancers are in the minority. After I discuss this image, I describe live choreographic moments that tend to occur frequently in AXIS’s work. 18 It is unusual for a dancer or choreographer with an impairment since birth or childhood to be in the upper echelons of the dance world due to lack of training opportunities and exclusion from classes as students and even theaters where dance is presented (pre-ADA). See Gill and Sandahl (2009) for a study on barriers and facilitators to arts careers for Americans with Disabilities.
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Fig. 2. AXIS Dance Company, Malonga Casquelourd Center for the Arts, Oakland, 2017. Photo by David DeSilva. Dancers (left to right): Julie Crothers, Dwayne Scheuneman, James Bowen, Lani Dickinson (this is an official publicity photo available for publication, see http://www.axisdance.org/media-kit#press-photos)
This photo features four dancers who are diverse in multiple ways, unlike the dancers in the stock ballet photo. The group includes, from left to right, Julie Crothers (who appears to be a disabled white woman whose left arm ends around the elbow area), Dwayne Scheumeman (who appears to be a nondisabled black man); James Bowen (a wheelchair user who appears to be a white male), and Lani Dickinson (who appears to be an Asian woman whose left arm ends just below the shoulder area). They are posed outdoors on a flat, concrete surface in front of a colorful mural painted on a brick wall of musicians of color playing their instruments. The image is dynamic, with each dancer caught in the action of upward motion, their shadows cast beneath them. This publicity photo portrays the company as socially progressive, urban, and exciting, but at the same time, it features elements that delineate the aesthetic boundaries of physically integrated dance’s potential limits and breakthroughs. The composition of the image encourages comparison between the dancers’ bodies. Given that this image includes more disabled dancers than nondisabled dancers, normativity is not given value over disability overall, but the viewer’s eye is guided along a choreographic line that facilitates knowledgegathering of similarity and difference, normative and different. The viewer’s eye flows from left to right along the zig-zagged line created by the bodies’ angled limbs, torsos, and heads, which are fully available for view; each body is roughly equidistant from the next. As the eye follows the zig-zag line, points of commonality and points of difference gather emphasis. The line breaks somewhat when the eye follows a fully extended limb that ends unexpectedly, drawing attention to difference. It flows more readily along limbs that are normative. Given that all of the dancers’ arms are extended, the disabled female dancers’ shortened arm draws the viewer’s attention. Bowen, the wheelchair user, is the only dancer with both arms pointing downward: his upstage arm holds the rim of his chair’s wheel and his downstage arm is angled downward. He is tilted up on his upstage wheel, which is his variation of the theme of elevation executed by the other dancers’ elevation from the ground on normative legs. Bowen’s wheelchair position echoes the position of the dancer to his immediate left (Crothers), whose upstage foot is planted and downstage knee is raised off the ground. While the image does not ascribe value or stigma to any of the bodies, the composition seems to satisfy viewer curiosity with views of difference fully on display. Display of difference is aesthetically beautiful and at the same time problematic, given how audience members in the West have been conditioned to read disabled bodies in representation going back
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to the tradition of the freak show. I am in no way claiming that AXIS Dance Company is a freak show, but I am pointing out that viewing practices honed over centuries are difficult to shake. Bogdan (1998) explains that freak shows deployed the representational strategy of displaying physically anomalous people so that their differences were highlighted. Displaying a “giant” alongside a “dwarf” or a “bearded woman” alongside her hairless husband was a tactic to invite comparison and exaggerate difference. (206–233) When difference is readily available to the viewer with no impediments, the viewer can linger and stare unfettered. This publicity photo, while not a freak show artifact, deploys similar representational strategies. To clarify, I do not mean that making difference visible itself is automatically problematic, but it may unintentionally mollify audience curiosity, which can, in turn, unintentionally serve as a distraction from the work itself, especially when the display of difference encourages comparison. My evidence for this type of distracted audience reception comes from my personal experience of having been in many physically integrated dance audiences, both European and American, over the past twenty-five years, including AXIS Dance Company. Inevitability, during the performance, audience members will rifle through their programs or use their smart phones to search for information about the performers’ disability status or “cause” of impairment.19 They will speak audibly to one another about who has what diagnosis during the show or intermission. They will focus on these questions during audience talk-backs. During this hunt for information, audiences tend to miss the artistry of the performers’ work. Their search for the “disability story” reinforces a lifetime of conditioning by mainstream representation (e.g. the Hollywood movie) that this story will lead them to some sort of meaning relevant to the piece when it is, at best, unrelated background information to what they are seeing onstage. This viewing tendency has frustrated many disabled artists across media.20 In addition to how meanings suggested by choreographic line can be overdetermined by normalcy, the meanings we attribute to space can do the same. In Fig. 1, the flat, outdoor surface (consistent with flat, indoor stage flooring) necessarily restricts the choreographic space the dancer using the wheelchair can inhabit. Scheuneman, the dancer who uses the wheelchair, is depicted in three-quarter profile just left of center – a position of prominence that draws focus. The other dancers’ bodies emerge at angles away from him, making him the axel of a semi-circular pattern. He occupies a horizontal plane while the dancers with normative legs make use of vertical space by leaping, jumping, and lunging upwards on tiptoe. Culturally conditioned meanings associated with space can layer upon associations audiences have with wheelchairs in general. It can be difficult for audience members to dissociate what they have learned to associate with direction.21 The direction “up” is often a signifier for positive emotions like elation and “down” is often a signifier of negative emotions like defeat.22 Lakoff and Johnson (1980) discuss how directional orientation serves as metaphor for emotional state. (14–21) They explain that human beings’ conceptual systems are based in metaphor and therefore deeply embedded in our relationship to the world and to each other. Even when it is unintentional, directionally oriented metaphors of emotion are difficult to disassociate from a composition such as the one in this photo. If audiences already link a position lower to the ground with negative emotions, these feelings may augment negative emotions consistent with stereotypes ascribed to wheelchairs (confinement and defeat, for instance). Or, the audience may interpret the nondisabled dancer’s upward leaping as the “normal” way of performing elation and the disabled dancers’ choreography while seated an approximation (i.e. the wheelchair user raises his arms and tilts his head up while the nondisabled dancers leap with arms raised and a similarly tilted heads). Because the movement appears to be based on the movement vocabulary of legs that leap, the disabled dancer’s movement vocabulary may be considered adaptive or aspirational. Albright (1997) observes a similar reference to normalcy in physically
19 In disability community, we call this sort of interrogation the “what happened to you” story. Those of us with disabilities are subjected overtly to such questions frequently in public spaces. 20 See Gill and Sandahl (2009) for a discussion of how critics tend to focus on the “disability story” to the exclusion of other elements of art by disabled people. Albright discusses this tendency as well (64–67). 21 Albright discusses other tendencies to associate particular emotions to the “grotesque body” (73). 22 Lakoff and Johnson explain that not only are up and down associated with positive and negative emotion, they are also associated with physical health and disease, control and lack of control, high social status, low social status, good and bad, virtue and depravity.
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Fig. 3. Dancers Laurel Lawson and Alice Sheppard at a works-in-progress showing at the Maggie Allesee National Center for Choreography, 2017. Lighting and projection by Michael Maag. Photo credit: Chris Cameron, courtesy of MANCC.
integrated dance in that “the choreography or movement style can emphasize images resonant of the classical body” (74). Scheuneman is lifting his arms and raising his head, but he is seated. If we were to remove the three leaping dancers from the photo, the seated dancer’s movement would not be a drastic counterpoint, but an image of its own which would be more liberally open to interpretation. 5.4. Disability dance I contrast physically integrated dance, which by definition includes both disabled and nondisabled dancers, to the third type — disability dance — which is what I call dance exclusively performed by disabled people (and most often composed by disabled choreographers). Fig. 3 is from a work-in-progress showing of Kinetic Light’s Descent from Beauty, which premiered in 2017. Descent is choreographed and performed by Alice Sheppard in collaboration with dancer Laurel Lawson. Both women are wheelchair users. This piece fully draws on disability experience in terms of sensory perception, movement vocabulary, and social commitments, creating a new form of disability dance. To begin with, the piece features what Sheppard calls on the company website “a unique, architectural stage that acts as a partner in the choreography and storytelling.” Sheppard worked closely with designers Sarah Hendren, Yevgeniya Zastavker, and students at Olin College to create a large ramp that fills the stage on which the dancers perform both in and out of their chairs. The ramp, back wall, and dancers’ bodies are continually illuminated by shifting images and light by designer Michael Maag, who is a wheelchair user himself. Sheppard explains that the ramp’s design concept comes from the sensorial experiences of moving through daily life using a wheelchair. Phenomenologically, wheelchair users know how gravity, centrifugal force, and uneven surfaces shape the experience of space, not only aesthetically, but also, emotionally. Descent’s staging on a giant, twisting ramp asks audiences to consider the aesthetic possibilities of an architectural feature that is often disrespected as an access “add-on.” Wheelchair users rely on ramps for access, and mainstream culture relegates ramps to separate entrances. Ramps are often unattractive and clearly not part of an original design. Historical buildings can reject the request for a ramped entrance by declaring it an unreasonable threat to “architectural integrity,” or a financial “undue burden.” For those of us in the audience who use wheelchairs, the full-stage presence of a
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ramp, not as an afterthought, but as an aesthetically engaging centerpiece puts our experiences into relief as generators of creativity. This ramp is vertiginous, treacherous, gorgeous, and thrilling – all at the same time. It is completely unreasonable. It is a total burden. It is ADA non-compliant by choice, not by neglect. And non-compliance by choice is what makes the ramp so compelling. Sheppard and her collaborators designed a setting that would take advantage of insider knowledge of how wheelchair users experiences space, time, partnering, and gravity. Descent’s stage floor is a multi-level, multi-angled landscape as opposed the flat surface on which most physically integrated dance is set (as in AXIS’s publicity still that I analyzed). The ramp’s design allows the dancers to make full use of vertical, horizontal, and angled planes, whereas in physically integrated dance, wheelchair users most often occupy horizontal planes, and nondisabled dancers make full use of both horizontal and vertical planes. In Descent, disabled bodies inhabit the stage in relation to one another; there is no nondisabled dancer to serve as a counterpoint in the visual field. Sheppard and Lawson move in and out of their chairs using the floor, perch their chairs on the ramp’s edge, slither underneath and around the ramp, take turns lifting each other, and fold their bodies and their wheelchairs around one another in intricate three-dimensional puzzles. Their dance encourages audiences to consider the give and take of weight, the cooperation, the beauty of, and the socio-political relationship between two wheelchair-using women of different races (one black and one white). While both dancers use wheelchairs, their bodies are different from one another in terms of shape and the ways in which their different impairments affect how they mobilize their torsos, heads, and limbs. The choreography pushes gender and sexuality boundaries as two femalepresenting bodies move in intimate and erotic duets. Their piece centers disabled bodies without a reference to able-bodiedness. Throughout the piece, different aspects of the women’s identities draw focus. At times, for instance, a dynamic informed by race becomes evident, or queer sexuality is foregrounded. Though these kaleidoscopic identity shifts may also occur in physically integrated dance, the disabled/nondisabled identity tends to overshadow them. In disability dance, these differences have more room to play out because disability is visually apparent, eliminating distraction of determining who does and does not have an impairment. In addition to Descent’s aesthetic innovations onstage, Sheppard extends the attention to ramps in the company’s online activism. On the Kinetic Light website, Sheppard explains that the piece “ask(s) new questions about social justice.” Sheppard posts blog entries to the Kinetic Light website on Descent’s aesthetic choices in relation to the ramp, and she hosts twitter chats about issues related to the piece. For instance, Sheppard posts questions about architectural access on Instagram and Twitter, encouraging her followers to create a collaborative critique of ramps. Using the hashtag #rampfails, followers can upload the worst examples of ramps that are non-compliant with the ADA, dangerous ramps, illogical ramps, ugly ramps, and so on. As the collection of imagery accumulates, their creation of a ludicrously non-ADA-compliant ramp born from the imagination and the way their bodies use wheelchairs becomes a clear act of resistance to the ways in which ramps fail us in daily life. The contrast between the way access to ramps oppresses disabled people and the way Descent’s ramp liberates movement is affirming and liberating. 5.5. New integrated dance The final type of dance I discuss in this article maintains the centrality of disability phenomenology in its aesthetic, while including both disabled and nondisabled dancers. I consider this dance type, which I call “new integrated dance,” an example of how interaction with disability culture on its own terms can offer ways to re-imagine the mainstream.23 Fig. 4 is from the duet called One Breath is an Ocean for a Wooden Heart (2007) commissioned by AXIS Dance Company and Alliger Arts. Dancers Lisa Bufano and Sonsherée Giles, who were both AXIS company members, choreographed and performed the piece. While AXIS would likely categorize this piece as simply “physically integrated dance,” I think
23 I am calling this work “new integrated dance” as opposed to “new physically integrated dance” because I would classify the former as capable of including people with sensory impairments, mental health differences, and intellectual disabilities (along with other non-apparent disabilities) and the latter specifically focuses on those with physical impairments.
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Fig. 4. One Breath is an Ocean for a Wooden Heart. Choreographed/created by: Lisa Bufano, Sonsheree Giles and Jerry Smith. Performed by: Lisa Bufano and Sonsheree Giles. Music created and performed by: Jerry Smith. Commissioned by AXIS Dance Company in association with Alliger Arts.
work such as One Breath does something new because the integration of disabled and nondisabled dancers happens in a form that begins with the impaired body to which the nondisabled body adapts instead of the other way around. The choreography of One Breath centers on the unique bodily configuration and aesthetics of Bufano, a disabled dancer. Bufano, who died in 2013, was a multi-media performance artist who had partial amputations to both of her legs and parts of her hands. Her work often delved into the transmutability of the disabled body by exploring permutations of her own. For example, she played with different prosthetic limbs for the ways in which they enabled specific movement and aesthetic qualities. She also performed without using any prosthetics. She is most well known for the distinctive prosthetic stilts formed out of table legs. These stilts inform the central aesthetics of One Breath. Similar how Descent’s ramp emerged from wheelchair users’ experiences of moving through the world, One Breath emerged from Bufano’s innovative way of engaging with her environment as an amputee. While Descent features two women who use wheelchairs in daily life, One Breath features one woman who uses prosthetics in daily life (Bufano) and one woman does not (Giles). In One Breath, both dancers perform the entire dance on stilts; it is not necessarily clear to the audience, though, that one is disabled and the other is not because their costumes and stilts are virtually the same. The invitation to comparison of disabled and nondisabled bodies is subtle and therefore backgrounded, which encourages the audience to focus on the dance itself. The two dancers become one as they are mutually “transformed through a wide range of imagery: animated furniture, magical toys, 8-legged insect, 4-legged gazelle, and 2-legged birds. The effect is eerie otherworldliness” (Giles). As the disabled and nondisabled dancers move together in this series of transformations, they become “integrated” into a new form that is possible because the choreography began with disability experience and incorporated a nondisabled dancer, rather than the other way around. For me, the shift of origin to disability experience is what makes this work “new integrated dance.” Bufano’s disability perspective established the way both dancers move; her way of being in the world even changed the perspective on what constitutes arms and legs. On her website, Giles writes that the piece was “informed by the relationship between physical transformation and identity [. . .] as two dramatically different bodies navigate a movement and sound landscape that is both enabled and constrained by their use of wooden stilts.” Due to feeling
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“groundless,” the two dancers remained “physically connected in some way to each other throughout the piece, until the end when they part.” In Fig. 4, Giles is on all fours, with her legs and arms elongated by the stilts. Bufano is kneeling with the long stilts. The women are connected at the forehead. Bufano appears to be using Giles’s body as leverage to rise up on all fours. Both thin, white, female-appearing dancers wear the same costume which consists of a white halter top, ruffled leggings, with similarly ruffled sleeves on their arms. While the two have different bodies, one disabled and one not, their sameness is emphasized by their matching costumes and constant physical connection. This connectedness seems an apt metaphor for the new integrated dance that I am articulating here – the interdependence of two equal forces that rely on one another to balance togetherness with separateness. While Fig. 2 and Fig. 4 are both pieces that AXIS Dance Company presented and include both disabled and nondisabled people, I argue that One Breath’s movement that originates in and clearly references a disabled person changes the overall conception of what integration can look like. New integrated dance can model for us what community integration based in the generative experience of disability might become as something we have yet to imagine. 6. Conclusion The arts can provide ways of imagining how we might re-think community integration, not only through the representations artists create, but through the art-making process and art presenting processes themselves. When mainstream dance meets disability dance in new integrated dance, the resulting form does not retain traces of an “original” that has been adapted to a population of disabled people. Instead, a new form emerges that is only possible because the creative process centers disability phenomenology as generative in its own right. It is this emergence that articulates how disability can transform the mainstream into something new. As we continue to explore what community integration could mean, let us go beyond accommodation, which assumes we start with mainstream and flex to include disability. Instead let us start with disability’s unreasonableness and burdensomeness to significantly remodel the mainstream. Segregation need not always be a lesser choice. Instead, let us consider how disability-centric spaces could be a chosen staging ground for what is possible. When we develop and grow the mainstream and disability-centric spaces at the same time, we provide new ways of thinking about what change can be when we are integrated on equal terms. Disclosure of interest The authors declare that they have no competing interest. References Alter. (2017). Lausanne conference. [http://www.alter-asso.org/lausanne-conference-2017/?lang=en] ADA. (2017). Great lakes center. [http://www.adagreatlakes.com/ADA/?title=3] ADA Update: A primer for state and local governments. U.S. Department of Justice Civil Rights Division. https://www.ada.gov/ regs2010/titleII 2010/title ii primer.html. Albright, A. C. (1997). Choreographing difference: The body and identity in contemporary dance. Middletown, CT: Wesleyan University Press. AXIS Dance Company. (2017). Retrieved November 25, 2017, from http://www.axisdance.org/. Bodies of Work, 2017, from: https://ahs.uic.edu/disabilityhumandevelopment/community-partners/bodies-of-work/. Bogdan, R. (1998). Freak show: presenting human oddities for amusement and profit. Chicago: Univ. of Chicago Press. Code of the Freaks – It’s not all feel good films. (2017). Retrieved November 25, 2017, from http://codeofthefreaks.com/. Dance Unstuck, 2018, from: http://danceunstuck.co.uk/. Gill, C. (1995). A psychological view of disability culture. Disability Studies Quarterly, 1–4. Gill, C. J., & Sandahl, C. (2009). Arts career outcomes and opportunities for americans with disabilities: A qualitative study. [http://www.artsedge.kennedy-center.org/2009NEASummit/papers.html] Kuppers, P. (2014). Disability culture. Studying Disability Arts and Culture, 56–74. Lakoff, G., & Johnson, M. (1980). Metaphors we live by. Chicago: Univ. of Chicago Press. Longmore, P. (2009). The second phase: from disability rights to disability culture. In Why I burned my book. pp. 215–224. Philadelphia: Temple University Press. Mainstream. (2017). Oxford Living Dictionary. [https://www.en.oxforddictionaries.com/definition/mainstream] Sandahl, C., & Auslander, P. (2005). Bodies in commotion: disability & performance. Ann Arbor: University of Michigan Press.
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