This report is supported by a grant from the Mertz Gilmore Foundation.
This report is supported by a grant from the Mertz Gilmore Foundation.
New York City is brimming with just about every type of art form and artist. Hordes of New Yorkers and tourists sop up these offerings, drawn to the stimulation, escape, provocation, and enchantment that the arts provide.
But when we pause to reflect, we quickly grasp broad patterns of exclusion that demand our attention.
The Disability/Arts/NYC Task Force (DANT) was established to examine how and why the work of disabled artists (both on the topic of disability and more generally) have historically been absent from public view, and to develop strategies to advance this work and support these artists.
Since DANT began, our goal has been to galvanize the growing disability arts presence in New York City, and secure its place in the city’s cultural agenda. After the City Council called for the Department of Cultural Affairs to craft a cultural plan for the City of New York in 2015, we became concerned that the plan would not adequately address disability arts. Indeed, early indicators were that disability arts was not accounted for. We set to work. When the plan, CreateNYC, was published in 2017, it set guidelines for New York City’s arts and cultural landscape for years to come. DANT had a significant impact on the final iteration of CreateNYC, and we have reported here on our advocacy for disability equity in that project.
DANT’s agenda has broadened since our initial work on the Cultural Plan, and we have become more than a Task Force—we are an established organization with many “tasks” ahead of us, but we keep the ‘T’ in our acronym as a reminder of our collective force.
We’ve crafted this publication to document the unique moment unfolding in NYC over the past several years when it has seemed like a broad and powerful movement for disability artistry is possible—drawing on decades of rich cultural and political forces that assemble around disability as a public category. We also hope this report is an accounting of the entrenched discriminatory forces that work against us.
Please join us to name the work ahead. Talk about it with others. Share this report on your social media platforms, email, and talk to us about it, too. Help us make the movement for disability arts in NYC as comprehensive, substantial, and sustainable as possible.
DANT’s transition from a Task Force to a substantial long-lasting organization comes with the responsibility to make our mission legible to a broad constituency, and to garner robust support for disability arts in this city of all cities. Toward that end, we have written this report to provide a history and context to our endeavors, and to map a future that tethers disability arts to all relevant organizations, practices, and individuals.
What is missing in accounts of the world that can be explained and illuminated by disabled artists?* What do we perceive in this world that others do not?
Disabled painters, actors, dancers, playwrights, and performance artists, with approaches not appreciated in the arts world before, develop creative strategies to navigate inhospitable social and physical environments. They hone their skills at adapting without compromising by responding, resisting, and circumnavigating. They use their creative wherewithal to develop their craft and make it legible to a world that has historically disdained them. These strategies inform the art.
We are agitated by the ways that work about disability and by disabled artists gets held at a distance: by calling it “outsider art,” or understood only as “therapeutic” or “political.” The many ways disability artistry is marginalized leads us to define new rubrics for what we mean when we speak of “disability arts.”
Though some artists who are considered disabled by standard definitions of the term have always produced art, they may not have not identified as participants in disability arts. These artists typically don’t leverage what active disability identification offers. Indeed they have achieved success, in part by standing apart from the group. And at the same time, nondisabled artists have consistently used disability as a metaphor for some vague danger, trauma, or moral affliction that makes no attempt to accurately engage with disability on its own terms.
And yet, we are not interested here in setting borders around what “counts” as disability artistry. Perhaps the most wonderful thing about disability arts is that we can’t locate it precisely. We know disability art is not defined by the pity some expect it to foster. But what it could be is limitless.
Disability arts centers the work of artists who actively employ the cultural positioning of disability in their work. For instance, Deaf artist Christine Sun Kim explores the tactility of sound when she moves. Disabled choreographer and dancer Alice Sheppard uses ramps to explore the literal ups and downs of wheeled movement, generating new vocabularies of dance. Disabled actor and writer Mat Fraser develops characters and storylines that rely on the dramatic possibilities of what he calls his “small and perfectly deformed limbs.”
These strategies take up the vantage point of the atypical, a creative powerhouse that disability brings to art.
Such artistic endeavors call into question widely used phrases involving the “overcoming” of a disability or the “inspiration” of disabled people’s achievements. Instead, disability arts is more interested in what someone does with their body and mode of functioning, not despite it—deploying that vantage point in the service of art. Active investigation of that experience has little patience with pity, and traffics instead in provocation, drama, comedy, nuance, and quagmires. Artists aspire to explore the sublime state of being exactly, exquisitely who they are.
Even artists and cultural spaces aware of the erasure of disability from New York City’s arts and cultural landscape often rectify this by forefronting the art of those members of the disability community who have greater access to education, housing, health care, and wealth. These people are, for the most part, white cisgender people with disabilities. Thus, many of these attempts to restore representations of disability art and artists fall short of true justice.
To rectify this pervasive and embedded injustice, DANT uses the framework of Disability Solidarity—a term coined by activist TL Lewis of HEARD (Helping Educate to Advance the Rights of the Deaf) and The Harriet Tubman Collective—to analyze the way radical and leftist movements fail to consider the multiple axes of oppression experienced by black d/Deaf** and disabled people. Disability solidarity builds upon Kimberlé Crenshaw’s intersectionality, a term that describes how many social ills are “overlapping” and as such create “multiple levels of social injustice.”
Disabled people who are queer, trans, poor, working class, Black, Indigenous, people of color (BIPOC), women—or those who hold many of these identities—are victimized by what Crenshaw called “a trickle-down approach to social justice.”
Disability solidarity speaks to how disabled black people specifically, and other multiply-marginalized disabled people live at the intersection of multiple sources of oppression. When used as a lens to observe arts and cultural institutions, DANT noticed that if disability art is featured at all, the work of BIPOC is often framed and displayed in tokenizing ways. Racial and queer struggles for justice are appropriated to advance or contrast disability narratives (such as claiming that the public is more aware of the American Civil Rights Movement than the Disability Rights Movement, without noting that disabled black people have been active in both.)
The absence of disability solidarity also shows up in more insidious and implicit ways, most notably, the definition of disability itself. Diseases and conditions mostly experienced by BIPOC, trans, queer, working class, and poor people (such as Systemic Lupus Erythematosus, HIV and AIDS, Sickle Cell Anemia, Asthma, and lead poisoning) are often left out or pushed out of disability justice narratives—even though government definitions of disability include those conditions. This has meant that vast swaths of disability art has not been recognized as such by the very activists and organizations working to end disability erasure in arts and cultural institutions.
The dominant culture needs to recognize disability as part of equity, diversity, and inclusion, and understand the overlapping categories of identity. At the same time, disability communities need to acknowledge that disability does not constitute its own monolithic category. When we commit to disability solidarity, we work toward both goals at once.
DANT uses the solidarity framework to encourage the coming together of many marginalized communities that may seem distinct but in fact are embedded in each other’s struggles. Disability solidarity allows us to name our commitments to each other and to create space for our work to succeed together.
It will take years of work and monitoring to begin to undo the harm that racist, classist, misogynist, queer/trans-antagonistic disability rights rhetoric has had on the arts and cultural landscape. DANT continues to name this harm to help center multiply-marginalized disabled artists within the arts world, and within disability justice as a whole.
*Throughout this document, we use what is called alternatively “disability-first language” and “identity-first language.” That means we use the term “disabled people” rather than “people with disabilities” to signal what is gained by identifying with disability.
The visual below, designed by NYC-based disabled artist Shannon Finnegan, maps what we understand as the field of disability arts. The relationships here are suggestive and ever-changing, though reflective of our appraisal of the terrain in mid-2018. We hope this map helps demonstrate how many places need to be transformed by disability equity.
In the following sections, we report on some key aspects of our learning as we’ve been organizing over the past 2 years. Though there are many things we’ve noticed about disability equity in the arts, we’re highlighting several headlines that capture the urgency and complexity of the issues.
Achieving disability equity in the arts is no simple task. One hopes for a checklist, some way of knowing in precise terms what needs to be done. But the issues warrant a more thorough investigation of institutional and disciplinary conventions than can be streamlined in any tidy way. In fact, the longing for a checklist itself speaks to the way that disability is imagined as something that needs to be managed in regulatory or legal terms. We imagine a much deeper and transformative kind of change.
The noticeable absence of disability artistry across all artistic genres and types of organizations reflects a history of discrimination and misrepresentation. From kindergarten to conservatory, and from curatorial deliberations to casting decisions, we recognize patterns of exclusion and misrepresentation that can’t be wished away. These developments must be named as a commitment to change.
Deep work is needed to restructure institutions and to reconstruct disability in the popular imagination. Yet, the scale of the task doesn’t lead us to despair–instead we can name incremental steps that can be taken to alter the culture of an institution to make it more inclusive, and to shift the practice of a discipline to broaden definitions of virtuosity and artistic merit.
Historically, funding for disability-specific arts initiatives has been concentrated on access for audiences. Funding audience access is not the same as funding the arts, artists, and organizations involved in creating and advancing disability artistry. Access to the arts provides opportunities for art to have an impact on disabled people, but DANT’s work is focused on how disabled people can have an impact on art and all that art does. We are not pitting one against the other. Rather, we are pointing out that support for artists and artistry is too often forgotten.
One of the first recommendations DANT made to the New York City Department of Cultural Affairs (DCLA) was to recognize this imbalance, and assure that funding was provided for disability artistry. We further recommended that they urge the many prominent arts and culture organizations in the Cultural Institutions Group (and other entities they hold sway over) to consider the ways that disabled artists and artistry can be key to their commitment to equity.
Access should be business as usual. If buildings, websites, and transportation systems are designed with accessibility at the center, there is often little or no additional cost to ensure that disabled people are included.
However, we have openly confronted a hidden truth about providing accommodations and access for disabled people: it can be costly. It is costly not because disability itself is costly, but because so many of the systems that define our being and movement in the world have not been designed with accessibility at the center. Thus, until we transform each of these systems together, there are sometimes significant expenses necessary to retrofit and deconstruct barriers. The cost of access is often the cost of undoing ableism.
Who should pay for this cost? Who pays for the American Sign Language (ASL) interpreter, the audio describer, or the Communication Access in Real Time (CART) provider? We think the most equitable funding for these things should be public. If the costs fall solely on the arts organizations—particularly those that are small and may be saddled with the task of redressing several forms of discrimination—then the impulse toward equity is stymied by the disincentives inherent in such endeavors.
The philanthropic community can also do a great deal to support access. Since the emergence of the U.S.’s nonprofit industrial complex in the mid-20th century—largely through the innovations of private health charities—philanthropic funding for disability issues has been driven by pity and biomedical narratives about cures. However, funding access for and to disability artistry represents a potential sea change in the way charities and foundations think about disability. In New York, DANT commends funders who understand this opportunity, including the Mertz Gilmore Foundation, the New York Community Trust, and the Ford Foundation. DANT is noticing that funder conferences, like Grantmakers in the Arts, are programming panels about disability arts and we support the expansion and sustainability of these conversations.
On March 31, 2017, at a DCLA Town Hall on Disability Arts, DANT articulated a powerful call. The city needed a fund dedicated to access for all DCLA-funded endeavors, which we suggested be called the Cultural Access Fund. We imagined a plan for providing grantees access-related expenses, such as ASL interpretation, CART transcription, audio description, and more as a separate category of expense. Instead of shouldering the costs of access themselves (or needing to set aside part of their grant money for these costs), organizations would be able to rely on city funds to make their work accessible to all bodies and minds. This plan would both incentivize inclusion and offload access expenses from those who want to include disabled people in their work. This fund would cover projects that work toward access and equity for disabled audience members, as well as those that are designed to support artists and artistry.
The DCLA recognized the urgency of our call and responded. In May 2018, they established the Disability Forward Fund (DFF): “A pilot initiative to promote organizations’ new and ongoing programmatic efforts to engage people with disabilities, including artists, cultural workers, and/or audience members.” We believe that the DFF can change the cultures and practices of the institutions it touches.
And yet, the original intent of the Cultural Access Fund we proposed was to have access understood as a separate category of support, with the specific intention of making disability-related initiatives more financially feasible. The expansion of the fund to general disability-related initiatives diluted the capacity to build this model with necessary specificity and sustained attention.
DANT remains concerned about how the DFF is being administered. We noticed that because the Fund was announced less than four weeks before the application deadline, many organizations did not have adequate time to design their projects or form necessary partnerships—things that can take some time to formalize when dealing with disability equity. If the DCLA intends for this to be more than a one-time “pilot initiative,” DANT urges the DCLA to study and publicly report on the allocation of funds and the impact of the projects funded to evaluate the DFF’s efficacy.
New funding alone does not guarantee a meaningful move toward disability equity. The funding must happen through several equitable processes, all guided by the same commitment to lift up the work of NYC’s growing disability arts community.
The Americans with Disabilities Act (ADA), passed in 1990, is significant anti-discrimination legislation. There are also complementary federal, state, and municipal regulations. This framework is sometimes mistakenly understood to be the only mandates that an organization needs to follow to assure equity. However, even if each and every one of the laws is adhered to and desegregation is achieved, real integration—and then the more transformative goal of equity—takes additional will and resources. Recognizing limitations of legislation is the first step.
It has been said that desegregation is a legal matter, while integration is a social matter. DANT has concerned itself not so much with assuring that organizations can check off items on a list (e.g., the doors to the bathroom are wide enough to accomodate wheelchairs, ASL is provided at public events) than that steps are being taken to change the culture of the institution to a more inclusive and equitable one. The will to do this and the procedures to enact a plan take creativity, expertise, and resources—which are not remedies that can be legislated.
Of course, we urge organizations to be in compliance with the law and be proud of that achievement, but we also ask you to recognize that compliance alone is setting a low bar. A more dynamic and creative endeavor is needed to increase real equity and integration.
DANT has observed that in many arts initiatives, research protocols, and organizational mission statements, terms such as “diversity,” “inclusion,” and “intersectionality” are used, often as aspirational goals. Rarely are these terms well-defined or the criteria spelled out. This is particularly problematic in research agendas and outcome reports, with their seeming adherence to rigor and accuracy.
If, for example, definitions of “diversity” are included in documents, they occasionally include disability among the vectors of diversity an organization wants to address. Yet often disability is not included along with race, ethnicity, gender, and other categories—and when it is, we have not consistently observed plans and procedures to address this category. There is, we believe, a general absence of people with disability arts expertise as well as an absence of disabled people on the payroll in cultural institutions, and we have urged focused research to assess this issue.
Disabled artists and cultural workers are marginalized in the arts world in part because they are absent in conversations about diversity and underrepresentation. Further, when disabled people are brought to the table, it is only a small and privileged portion of our community that is represented. Black, Indigenous, disabled people of color, and queer, trans, gender-nonconforming disabled people continue to be left out of high stakes discussions. While DANT works to diversify the New York arts landscape with respect to disability, we understand racial, gender, and socioeconomic justice as embedded within our work for disability justice.
DANT has advocated for research to determine how education systems at all levels can implement arts education that builds a foundation for disability artistry to flourish.
Teachers who function in all these settings have rarely been exposed to pedagogy based on the premise that disability can be a meaningful aspect of artistry, not something to be “corrected.” Disabled students need access to the arts, but they also need access to artistry rooted in disability. Discrimination in education workplaces means disabled artist-teachers who could build unique and innovative disability arts pedagogies are woefully rare. The more advanced the level of education, the less prepared the teachers are to do this work. In institutions of higher education and conservatory training, faculty have had minimal experience with disabled students in their programs. It often falls to the students themselves to adapt what they learn to their own needs, and to supplement their training with exposure to disabled artists in their field.
The Office of Arts and Special Projects in the NYC Department of Education released the Arts and Students with Disabilities Online Resource Compendium in 2017. It is a strong start in supporting arts educators who often do not know where to go for resources to deepen their engagement with disability in the classroom. But it is also indicative of how preliminary work in this field is. The strategies often focus on impairment-specific solutions, which is more consistent with a medicalized and normalizing approach to disability, and are often agnostic about disability itself as a source of creativity.
DANT has noticed a pervasive trend in NYC: when an organization wants to commit to disability equity, it often does so using the uncompensated, precarious labor of disabled people who are contracted as consultants. We recognize the good intentions in wanting to center the perspectives of disabled people, but limited engagement means limited effect.
We are especially concerned about the way that a time-limited consultation with someone with disability expertise gets cited by an organization for long after the consultant has stopped working, even if the organization has done very little to change their processes. The work of equity should happen in deliberative spaces, facilitated by experts who have had access to the expansive political category of disability and its relevance to the workings of that organization. In some cases, DANT advocates a strategic refusal of consultation unless disabled people have access to decision-making processes over time and are fairly compensated for their expertise and labor.
DANT recommends developing guidelines for incorporating people with disability expertise on grant review panels and on other committees and advisory councils/commissions charged with decision-making about the allocation of funds or the promotion of particular endeavors. We suggest that the DCLA and other public and private funding sources require that requests for proposals spell out guidelines that include criteria for equitable inclusion and support of disabled artists, and that applications are judged, in part, by the degree to which they uphold the ideals of inclusion and equity.
Disability artistry is not new, but in the past several years it has achieved greater recognition, and we have witnessed several field-defining moments in this time. These are moments when the cultural authority of disabled artists prevailed and called into question prior work that “used” disability without deep understanding of the lived experience of disabled people.
Disabled artists have articulated resistance to the dominant culture’s definition of our lives, and resistance to our social positioning. We are eager to have the conversations that will help the arts world reckon with the authentic, when the public has been largely fed damaging fictions for centuries.
Further, we have articulated how metaphors and imagery of disability are used to stigmatize and demean people. This is important to communicate to an art world keen on resistance. Disabled artists share with many other artists an acute awareness of the ways that art can be used as resistance to virulent forms of racism and misogyny that have particular currency in this moment. However, we bring a unique perspective to resistance to other underlying ideologies which have been given new airings of late—eugenics, utilitarianism, and notions of worthiness that affect us all.
DANT is calling for an examination of organizations and endeavors focused on disability which have no disability leadership. Is disability leadership always required? Does disability leadership itself assure authenticity and meaningful representation of disability perspectives? How do we develop and foster generative allyship?
These are complex and important questions. They don’t require neat answers because their intricacies drive our ongoing learning and development. Honoring the field’s transition means staying with what is unresolved.
Among DANT’s accomplishments in the past two years, we are most proud of our success in bringing together disabled artists and allies—across genres, backgrounds, interests and more. We recognized early on that many disabled artists didn’t know each other, nor much about each other’s work. We provided, and will continue to provide extensive coalition-building opportunities. This is essential for the disability arts movement to take root and flourish.
This community-building endeavor is in keeping with our experience in larger disability communities—that disabled people, when given the opportunity to bond, have shaped the strongest and most dynamic constituency and community imaginable. Though previously divided—some in isolation in their homes, group homes/residential facilities, or in “special” programs divided up by impairment (schools for the blind, United Cerebral Palsy, etc.)—once the individuals found each other, and coalesced around collective priorities, the bond was powerful.
Disability community is a corrective of the idea that disability is a concern about individual conditions. A coalition can work together to alter our social positioning, to fight discrimination that cuts across multiple impairment categories, and support one another in a mutually interdependent community. Representations of disability in theater, film, and literature have overwhelmingly individualized disability, which is among the most entrenched misconceptions in depictions of disability.
Disabled artists often use accessibility itself as an aesthetic engine. Rather than viewing access features (such as ramps, American Sign Language or Audio Description) as auxiliary to their artistry, increasing numbers of artists are creating work that includes access features as a creative element in their endeavor.
Let’s briefly consider a few examples.
In the winter of 2018-2019 at the Museum of Modern Art, Park McArthur presented an exhibit titled Projects 195 that had only a handful of objects, including two small works on paper, and a modular structure on the floor tucked into one corner of the sizeable gallery space (one of three similarly discrete configurations for this piece during the show). There was wall text that explained a few aspects of the exhibit, including its focus on ideas about disability. However, of interest here is the way that in contrast to the minimalism of the objects on exhibit, headphones were provided to listen to several rich audio tracks. These included descriptions of the objects on view, as would usually be available for blind, low-vision, and non-visual museum-goers. The additional tracks offered context and insight, and were designed for all in attendance. One audio track imagined a live-work residence for disabled and non-disabled artists, complete with a roll-in pool. This is an example of transforming what is typically a functional access feature into a featured element in a multidisciplinary exhibit.
The idea that access features might be part of the art itself is evident in Kinetic Light’s DESCENT, with dancers Alice Sheppard and Laurel Lawson. This production includes a sonic immersive experience designed for non-sighted audience members, but available to all. Different audio tracks use poetry, dramatic dialogue, and an enhanced soundscape to complement the visual elements of the work. Further, DESCENT’s central set piece is a wildly designed curving ramp, truly usable only by wheelchair users as skilled as Sheppard and Lawson. DESCENT declares that access features, such as ramps, needn’t be mundane and utilitarian.
Often the Audio Description, as it is typically called, is not authored by the artists themselves, but by educational staff in museums or by professional Audio Describers for performance and film. And ramps, whether the fantastical one used in DESCENT, or the ones affixed to buildings are rarely conceived of by wheelchair users. Park McArthur, Alice Sheppard and Laurel Lawson were directly involved in the work and saw these elements as part of their larger projects.
The 2015 Broadway production of Spring Awakening offered perhaps the most obvious example of access as artistry. The cast was comprised of Deaf and hearing actors, and each utterance on stage was both signed and spoken. The Deaf and hearing audience members had access to the same material. The powerful combination of the two languages revealed meanings lurking in the text, and displayed the dynamic artistry and communicative power of ASL to a new audience. It had a successful run, and demonstrated that audiences and critics could cozy up to a production that put American Sign Language at its center.
These examples indicate the potential for disability arts to reimagine what is understood as “access” and what is “artistry.” Further, when artists enfold accessibility into their work, they dispense with hypothetical audience members and instead consider the possibilities for engagement with unique bodies and minds.
In the following sections, we outline several approaches to disability equity that we think are particularly useful in NYC’s cultural landscape. DANT sees these as openings and opportunities that, taken together, demonstrate why we are at a unique and pressing moment to expand and sustain our activism.
Americans for the Arts, an omnibus advocacy and service organization, defines cultural planning as “a public process in which representatives of a community undertake a comprehensive community assessment and create a plan of implementation for future cultural programming.” Because this process is often thought of as a mirror of the communities it seeks to serve, equity, inclusion, and diversity are typically guiding principles in how a city surveys and supports its arts and culture assets.
Cultural plans serve a unique purpose in city governance. They can sometimes articulate priorities and values about a city’s long-term arts and culture ecosystem that don’t exist in other public documents. Many major U.S. cities have come to understand the value of a broad plan for cultural programming—beyond the leadership and investments of particular governing bodies—and have passed legislation calling for cultural plans. This renewed interest in the genre of the cultural plan has produced cornerstone documents in Chicago, New York, Denver, Houston, Boston, and others.
These plans can be important tools for advocates of equity and diversity. They offer opportunities for engagement with underserved communities, and the development of recommendations that name and attempt to undo the discriminatory forces that exclude marginalized communities from a city’s vibrant cultural life.
Unfortunately, most cities continue to ignore the urgent call of disability equity in arts and culture. In our view, the cultural plans of Houston, Denver, and Chicago lack any meaningful engagement with disability; Boston’s plan only offers vague and preliminary recommendations for disability equity. This lack of recognition is not specific to cultural plans, of course, and reflects a deeper avoidance and rejection of disability in society at large.
Thus, cultural plans tend to lack incentives and mandates for fostering artistry in underserved communities that do not have high degrees of legibility, geospatial concentration, or organization. Especially in the case of disability arts, this means that cultural plans often unwittingly mirror and can reinforce the inequity that already exists in many places.
DANT formed in large part because we observed that the NYC Department of Cultural Affairs was not adequately addressing disability as it began formulating a cultural plan for the city—a momentous project that was called for by City Council legislation in May 2015. This plan would be big. Not only was it tasked with crafting a “comprehensive” look at the city’s arts and culture landscape, it also needed to articulate “recommendations, initiatives, and priorities” about a host of issues and with a variety of timelines for achievement.
The document is only to be revised every 10 years. The DCLA will report on its progress toward the Plan’s goals every two years. We knew we had a unique opportunity to influence a city-wide guiding document.
Our early interactions in fall of 2016 focused on our concerns about the DCLA’s recent work and decision-making processes that we suspected would continue as they began work on NYC’s Cultural Plan. For example, we noticed that in a recent request for proposals about equity and diversity, the DCLA didn’t name disability-related projects as part of what they sought to fund. We pointed out that the grant review panel might similarly ignore this aspect of diversity in its deliberations. We further pointed out that there was a lack of disability expertise on the DCLA staff, and that there was no accurate data about disability and the arts in NYC to guide priorities and measure progress.
The DCLA acknowledged our concerns and took two concrete steps to address them. In the spring of 2017, they created a position in which half of the employee’s time would be devoted to external affairs, and the other half to disability inclusion. A cultural worker with a background in disability arts was hired to fill this position. In addition, the DCLA held a town hall event specifically about disability and the Cultural Plan and, despite bad weather, it was a packed house.
But other problematic issues remained throughout the process. To implement their public engagement for the plan, the DCLA had hired an organization with little disability expertise, and then hired an independent disability consultant whose role in the process was undefined. The agency has never addressed how it would account for the lack of data about disability. At times it seemed they didn’t recognize that we were advocating for changes to the process by which the plan itself was being shaped, rather than things we wanted to see in the plan.
In July 2017, the DCLA released CreateNYC: A Cultural Plan for All New Yorkers. DANT’s influence is noticeable in several parts of the plan, especially in the section about equity, diversity, and inclusion. See page 79 for the most direct engagment with disability issues.
DANT is proud to have had an impact on the plan, and we commend the DCLA for their openness to learn about disability equity and their commitment to the field.
We remain vigilant. DANT has serious concerns about the vagueness of many of the recommendations in the plan. We are concerned that one-time initiatives will be cited as progress even if they do not sustain. We notice that several priorities in the Plan are already required by disability legislation, making it seem like organizations should strive for things that should have already been accomplished.
In January 2016, the NYC Department of Cultural Affairs released the results of a large-scale study of the city’s cultural workforce, conducted by Ithaka S+R. The report proudly claims it collected data “on race/ethnicity, gender, disability, age, job type, and level of seniority from 987 organizations,” including information about 36,441 paid employees.
And yet here is the section on disability data, reproduced in full:
“The quantitative section of the survey included a request for information about the number of staff members who self-identify as having a disability, but a statistically insignificant number of groups provided responses on their staff for this topic. While this lack of information is an obstacle, the diversity initiative will seek to find meaningful ways to include people with disabilities in new efforts at access and inclusion.”
DANT has asked the DCLA to report on its progress to account for this failing of their research, but we have not received an answer as of the date of this publication.
Without good research, it is difficult to know what the nature of disability representation is for creative professionals (writers, directors, curators, choreographers, lighting designers, etc.), arts administrators, board members, and others. Every disabled artist and cultural worker we’ve spoken to can attest to the obstacles they encountered in getting the exposure and training they needed from kindergarten through conservatory. Even those who are accepted into advanced training report that often faculty are not prepared to work with them, and tend to employ standard tools that fail to appreciate embodied and mental diversity—therefore failing to serve the development of disability arts.
Yet, we also acknowledge that any strict accounting of what is included in the category of “disability” is limiting, and may even lionize medicalized notions of disability that have been harmful in the lives of disabled people. Thus, we call the struggle for accurate and expansive research about disability in the arts part of data justice. We stress the need for data so that equity and inclusion initiatives are measurable and can’t be deferred as an abstraction. At the same time, we acknowledge the limits of data collection and strive for approaches to data collection and analysis as creative as disability artistry itself.
We are excited, however, by the work of a nonprofit called DataArts that is actively investigating these complexities. Los Angeles County used DataArts demographic measures for a study of their cultural workforce, released in April 2017, which included meaningful data about disability. This leaves city officials and advocates with a necessary anchor for future work. We are eager to see DataArts measures and methods taken up in NYC—and for DataArts to continue to learn about how to make data more accurate and inclusive.
In January 2017, DANT organized a Convening at The New School, co-sponsored by Dance/NYC, the NYU Disability Council, the NYC Mayor’s Office for People with Disabilities (MOPD), and The Eugene Lang College Arts Program at The New School.
The day brought together disabled artists, members of the broader arts community, and representatives from some of NYC’s city agencies. Commissioner Tom Finkelpearl of the Department of Cultural Affairs, and Commissioner Victor Calise of the NYC Mayor’s Office for People with Disabilities each spoke, and offered their support for DANT’s mission and endeavors. The two agencies have continued to work together to shape legislation and practice in NYC.
After several presentations from DANT and others about our ideas for a vibrant disability arts scene in the city, attendees were invited to collaborate in small, facilitated groups. Each group was given the same question set for discussion:
What are disability arts and disability artistry?
What does disability artistry, as we have begun to define it here, need to thrive in New York City?
What forms of discrimination and opposition most undermine disability arts?
Where is the most advantageous “free space” for next actions? What actions will help us take advantage of these opportunities?
The data we gathered were organized into four general categories: Goals, Observations, Concepts or Definitions, and Solutions or Recommendations. A fifth category was self-identified by many of the groups’ facilitators as a “parking lot”: ideas offered that were not germane to the questions asked per se, but were valuable contributions.
The solution-oriented recommendations clustered around 10 general themes, as indicated in the chart above. The greatest concentrations among these themes were found in: Financial Support (26%), specific recommendations for Explicit Disability-Specific Inclusion (22%), and suggestions for training at the Higher Education level (15%). Many recommendations straddled two or more of the categories—such as “more funding for accessible spaces,” or “funding to support artists making work.” In all cases, these combination recommendations are counted only once according to the lead recommendation.
Specific recommendations for greater Financial Support ranged from funding for intersectional work and initiatives, earmarking funds for more accessible spaces, training disability artists as arts educators, funding services and accommodations, and to explicitly support disabled artists to create and present their work.
Higher Education considerations focused largely on training educators to include disability both specifically and explicitly in arts education professional development curricula. Recommendations also highlighted including disabled artists within existing and new higher education institutions, and development of new/adapted curricula.
At the heart of the Convening, and at the heart of many of the specific recommendations, is the widespread adoption of the practice of “Nothing Without Us.” This ensures that disabled people, in this case disabled artists and cultural workers, are actively involved in decisions about disability inclusion, and the implementation and assessment of such efforts. Participants in the Convening also recommended that disabled people be involved in training and curriculum development for arts educators, designers, architects (to prepare them to create accessible spaces), and for others who will be building more inclusive worlds.
Urgency was communicated by constituents for immediate involvement in those decision-making bodies working toward disability inclusion, to ensure that disability perspectives and needs are addressed. Urgency also echoed strongly in the areas of infrastructure (e.g., more accessible public transportation to get to arts and culture, accessible spaces for the presentation of disability art, free/affordable workspaces) as well as a recognition that planning and good implementation is a long-haul endeavor.
Many expressed a desire for a stronger, communicative network of disabled artists of all genres and disciplines. They called for more convenings like those offered by DANT and Dance/NYC, convenings that would include disabled artists in conversation with curators, presenters etc., as well as more informal but regular meetups.
Woven throughout the Convening were discussions of disability artistry, and the best routes to advance the field.
Traditionally, the philanthropic response to disability focused on “care” and “cure,” an approach consistent with widely-held beliefs about priorities for disabled people. In recent decades there has been increased support for educational, athletic and social endeavors, and what is vaguely labelled “quality of life.” Part of that latter category includes increased funding for disabled people’s access to the arts and for arts education, activities often labelled “recreational” or “therapeutic.”
However, in the last few years, we have seen a shift towards support for disability artistry. It is particularly noteworthy because it is often coming from funders who primarily or exclusively fund the arts. We have been excited by this kind of investment in innovative and important work that has the stamp of “disability arts” all over it. Funders such as the Mellon Foundation, Ford Foundation, Mertz Gilmore Foundation, New York Community Trust, Surdna Foundation, Stavros Niarchos, Gilman, the NYC Department of Cultural Affairs and others are indicating, by their support, their belief in the artistic merits of these endeavors.
The funder of this report, the Mertz Gilmore Foundation, offers a good example of the shifting currents within the philanthropic community. Leah Kraus, Senior Program Officer for Dance & Special Projects, commented on this new trend:
“Something exciting is happening in NYC – unique circumstances of expertise and momentum are priming the disability arts movement. A generation of ambitious disabled artists are experimenting with form and advocating for their place on the main stage; presenting venues are aware of (and exposing audiences to) the aesthetic innovations posed by disabled artists; and audiences are showing a greater interest in beautiful unusual movement. Fueling the crusade with data and examples, are service organizations that conduct research, publish studies, and hold forums to candidly address the issue and advocate for action.
As diversity has become a crucial priority for DCLA, the term now encompasses disabled people. And the private philanthropic community is taking up the mantle. The old formula – supporting disabled artists through social or disability funding rather than through the arts – has not moved the needle forward. The separation has prevented artists from leaving the small scale to reach bigger mainstream institutions. Current up-lifts in funding demonstrate a strong appreciation for the richness and complexity of the disabled art sector and the desire to make disability art a more evident and palpable part of our culture.”
We also heard from Kerry McCarthy, Vice President for Philanthropic Initiatives at the New York Community Trust, which funded DANT’s 2017 Disability Equity Boot Camp, a program to train NYC cultural workers in fundamentals of disability arts advocacy:
“Considering that between 12.6 and 20% (there are demographic variations) of Americans identify as having at least one disability, only 4% of philanthropic money goes to help this group. Only a few foundations (like The New York Community Trust and the Mertz Gilmore and Stavros Niarchos foundations) have addressed this lack of funding by consistently and quietly supporting disability rights. New light was shown on the issue when Ford Foundation initially omitted—and then dramatically included—disability in its high profile strategy to tackle inequity.
Similarly, the City Department of Cultural Affairs faced criticism for not including disabled artists and cultural workers in its diversity initiative, resulting in new commitments to better support disability arts in its cultural plan.
On the national stage, Doris Duke Charitable and Andrew W. Mellon foundations are stepping up. Meanwhile, arts service organizations have launched new interventions. Dance/NYC and the Lark have strong initiatives to support and promote disabled artists and artistry, and Oakland-based AXIS Dance Company has created a network of regional advocacy hubs to advance the national field of physically integrated dance. Overall, this increased attention to disability arts is highly concentrated in New York City; however, it is not without the presence of national funders and nonprofits that are using the bully pulpit in a way we haven’t seen before. It remains to be seen if more money flows to the field.”
As these statements indicate, the tide is turning and attention is being paid. We at DANT are invigorated by these shifts. It is our job, though not ours alone, to press for support for the kinds of systemic changes that can increase equity and elevate the cultural authority of disabled artists.
Who has access to disability culture? DANT strives to name the ways that understanding disability as a political and cultural force is itself limited by forms of exclusion to educational and cultural centers where pedagogies of disability typically reside. When access to these spaces is constrained by systems of oppression steeped in ableism, it is essential that we contribute to a public pedagogy of disability that can thrive outside of higher education.
Many people who want to learn more about disability arts don’t know where to go to find proper exposure to the field. Many seek some kind of credentialing that does not exist. DANT understands public programming as core to its mission to address this problem and to make space for us to help each other learn and grow with disability artistry.
DANT has collaborated with several organizations on public programming. It has been an exciting and deeply moving experience to see the evolving commitment of Dance/NYC, Gibney, and the Whitney Museum to disability equity in their programming, and it has been a great pleasure to work with them. Their willingness to engage with disability arts, and to leverage their cultural authority in the support of it is a model we hope will spread.
Whenever DANT gives a presentation, we are guided by these questions: How do we make this presentation as accessible as possible? How do we reach as many people as we can? How do we invite the audience to respond to us and to join us? What barriers are working against us even before the event begins?
In February 2018, DANT was invited by the NYU Center for Disability Studies to give a talk about our work, co-sponsored by the Department of Performance Studies and the Hemispheric Institute for Performance and Politics. We saw this as a key moment to report on our work, so we’re sharing the list of lessons, which we elaborated on during the event.
Crafting legislation to address inequities in arts and culture can be a potent tool for change. Legislation offers precision and thresholds for implementation, including clearer mandates for widespread adherence to equity standards than are available through other avenues of advocacy. When disability equity is ignored or when lip service to it fails to materialize into meaningful change, changing the law can be a powerful route.
In 2015, New York City Council Members Helen Rosenthal and Ritchie Torres, working with Commissioner Victor Calise of the NYC Mayor’s Office for People with Disabilities, introduced three pieces of legislation that helped support disability equity in the arts. One requires that by 2020, all city government meetings open to the public be held in facilities with hearing loops, a technology that improves sound quality for people with cochlear implants or hearing aids. Another bill requires any publicity materials for a public event with a capacity of 25 or more hosted by the City or any organization funded by the City in the last two years to include accessibility information, a contact for obtaining information about accessibility, and a deadline by which accessibility requests should be received.
The last bill requires all city agencies to have a Disability Service Facilitator who coordinates the agency’s compliance with the ADA and any other relevant laws, and whose name and contact information is posted online.
Legislation can have a lasting effect on the city’s cultural ecosystem. When new initiatives are sourced from public engagement, they can also reflect the best kinds of democratic process. But legislation can also be limited—entrenched within a legal and rights framework that is slow to adapt to the demands of the disability community and the ways that disability justice is tied to struggles for racial, gender, class, queer, and trans justice. Thus, legislation is often only one part of a mosaic of approaches we can employ simultaneously.
The Americans with Disabilities Act of 1990 (ADA) opens with Congress’s findings that:
“physical or mental disabilities in no way diminish a person’s right to fully participate in all aspects of society, yet many people with physical or mental disabilities have been precluded from doing so . . . historically, society has tended to isolate and segregate individuals with disabilities, and, despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem.”
Nonetheless (despite recent significant advances and federal civil rights legislation, including the ADA and state human rights laws), the 54 million disabled people in the United States continue to encounter persistent discrimination as well as vast restrictions on personal freedoms that compromise the pursuit of happiness. Too many disabled people are still absent from public view. Often sequestered or relegated to the margins, individuals confront attitudinal, physical, and communication barriers that limit active participation in the social, cultural, economic, educational, and political life of this country.
Not only are disabled people often set apart from the larger social world, but we are often isolated from one another. One of the many successes of the disability rights movement beginning in the mid-’70s was the birth of a constituency with a powerful collective voice. These recently enfranchised citizens are slowly becoming a visible presence in the social landscape: boarding airplanes, casting votes, performing on stage and screen, and commandeering the dance floor. We are an increasingly bold and uncompromising lot, thanks in part to the work of litigation that defies the shame and unworthiness perpetually thrust upon us.
These forms of exclusion are part of the primary forms of discrimination that the Americans with Disabilities Act (ADA) seeks to prevent. See Alexander v. Choate, 469 U.S. 287, 301 (1985); H.R.Rep. No. 101–485(II), at 29, 1990 U.S.C.C.A.N. 303, 311 (1990). For example, under the ADA, it is insufficient for a program to only be offered on equal terms to those with and without disabilities. Rather, the law requires “affirmative accommodations to ensure that facially neutral rules do not in practice discriminate against individuals with disabilities.” Henrietta D. v. Bloomberg, 331 F.3d 261, 275 (2d Cir. 2003); see also Tennessee v. Lane, 541 U.S. 509, 511 (2004) (“Recognizing that failure to accommodate persons with disabilities will often have the same practical effect as outright exclusion, Congress required the States to take reasonable measures to remove… barriers to accessibility.”). As the Second Circuit has put it, “[i]t is not enough to open the door for the handicapped [sic]; a ramp must be built so the door can be reached.” Dopico v. Goldschmidt, 687 F.2d 644, 652 (2d Cir.1982) (internal quotation marks and alterations omitted).
In one instance, the Court inquired “not whether the benefits available to persons with disabilities and to others are actually equal, but whether those with disabilities are as a practical matter able to access benefits to which they are legally entitled.” Henrietta D., 331 F.3d at 271. Specifically, “an otherwise qualified handicapped [sic] individual must be provided with meaningful access to the benefit that the grantee offers.” Id. (emphasis added) (internal quotation marks omitted); see also Alexander, 469 U.S. at 301, 105 S.Ct. 712 (holding that the ADA requires not only that people with disabilities be provided with access to public services, but that they “be provided with meaningful access” (emphasis added)). To accomplish such “meaningful access, reasonable accommodations in the grantee’s program or benefit may have to be made.” Henrietta D., 331 F.3d at 271.
In the context of disability arts, cities thus have an obligation to not only offer opportunities to disabled artists, but to take the affirmative steps that might be necessary to make their dreams a reality.
Litigation should be also be considered and may sometimes be necessary to achieve the equality to which we are entitled. Indeed, litigation is a powerful tool with the potential to force society to make sweeping changes to improve the lives of millions of people with disabilities that otherwise would never occur. However, the limitations, potential drawbacks, and risks of litigation must be considered. As an initial matter, we must consider whether advocacy could potentially achieve a better result. Such an approach may ultimately avoid the need for litigation. Thus, a non-adversarial (or even adversarial but short of litigation) approach is worthy of consideration before launching into a prolonged legal process.
The antagonistic nature of litigation is also a potential drawback, as city governments are likely to become defensive about their practices. Once attorneys are involved, the chances to consensually achieve benefits which exceed strict legal requirements diminishes. In addition, a loss in a litigation could set bad legal precedent, foreclosing future opportunities to develop the law in a positive manner. Thus, it is critical that competent counsel is identified and a litigation is only pursued when the facts are appropriate. On the other hand, litigation must be considered as a potential tool to force positive social change—some of the most important civil rights successes that have impacted millions of people with disabilities have been achieved through litigation, and likely would never have otherwise occurred.
DANT set out to mark the territory of disability arts in NYC, to chart a course for artistry to grow and flourish, and to coalesce a community around this endeavor. In this report, we have mapped our progress in this work, and shared our thinking and strategy to effect change.
We are moving forward, expanding our reach, growing our network, and disturbing the boundaries that constrain the work. Toward that end:
We will continue to put the art and ideas that constitute this field in front of various public audiences.
We will work to build the field by supporting educational endeavors, alliances, and creative opportunities.
We will continue to monitor the implementation of CreateNYC, and the work of the DCLA, to assure that disability arts is supported in ways outlined in the Cultural Plan and in the agency’s stated commitments to the field.
We will work specifically with organizations that represent constituent groups to help identify points of intersection and solidarity. We will encourage the use of the disability solidarity framework across groups, and seek commitments from organizers whose work is embedded with ours.
We will work with cultural organizations to better understand the ways that disability arts offers new understanding of interdisciplinarity—the innovation of genres and art forms.
We will work with cultural organizations to cultivate use of American Sign Language and audio description as both creative and functional elements of a production or an exhibit. As such, the use and creative parameters of these and other accessibility features should be considered at the outset of a production or exhibit, rather than something tacked on at the end.
We will work toward a better understanding of the ways that cultural organizations address disability within their ranks. For example, education and visitor services departments of museums have typically borne the responsibility for addressing disability in their institutions, while curatorial staff have largely avoided the topic. This is in keeping with the traditional divisions between those who, supposedly, serve the public and those who serve the art. Similar divisions exist in performance venues between, for instance, front of house and audience development departments and the creative team. DANT sees an opportunity to forge new kinds of collaborative endeavors within these organizations focused on disability.
There’s more to be done of course, and we urge you to join us in this work. DANT presents public programming, publishes a monthly newsletter of disability arts events and exhibits in NYC, and is in the process of setting up interactive multimedia platforms to spur lively exchanges and activism. Please join the DANT mailing list and we will keep you up to date on our work, and on opportunities to engage with the vibrant disability arts community that is growing in NYC.
We are indebted to many leaders who contributed to this report, particularly to the members of the Disability/Arts/NYC Task Force, who shaped the organization’s mission and the strategies we have adopted to create change in the systems that oppress and constrain disability artistry.
Elisabeth Axel, Founder & President of Art Beyond Sight
Maleni Chaitoo, Actor & Producer
Mat Fraser, Actor, Writer, & Disability Artist
Faye Ginsburg, Professor at NYU & Co-Director of NYU’s Center for Disability Studies
Lane Harwell, Executive Director of Dance/NYC
Sara Ingram, Director of Disability Affairs for Homeless Services for the Department of Social Services, City of New York
Mara Mills, Associate Professor at NYU & Co-Director of NYU’s Center for Disability Studies
Gregg Mozgala, Founder & Artistic Director of The Apothetae
Harilyn Rousso, President of Disabilities Unlimited
Robert Sember, Assistant Professor of Interarts at Eugene Lang College, The New School
Alice Sheppard, Dancer & Choreographer
Hentyle Yapp, Assistant Professor at NYU
Jessy Yates, Artist & Performer
We would especially like to thank Lane Harwell (Executive Director of Dance/NYC during the work described in this report), who was pivotal in shaping DANT’s agenda. Daniel Brown of Sheppard, Mullin, Richter & Hampton LLP has been at the ready when we called, informed our thinking on a number of fronts, and was instrumental in writing the Legislation section of this report. Commissioner Victor Calise of the NYC Mayor’s Office for People with Disabilities has been an ally in our work from the beginning. And Commissioner Tom Finkelpearl and staff of the Department of Cultural Affairs have, since DANT first approached them in the fall of 2016, been ready and willing to engage with us.
Cyrée Jarelle Johnson has been a generous and brilliant interlocutor. They helped us understand and commit to disability solidarity as we tarried in the limits of intersectionality, including crafting that section of our introduction. We are also deeply grateful for their copy editing work on this publication.
We thank Shannon Finnegan for her work featured in this report and for her help crafting image descriptions for an early draft.
Trina Rose gathered and organized an array of sources that helped us understand the field of disability arts in NYC during some crucial moments in the development of this document. Her dedication to this work was an enormous help.
DANT’s home at 20 Cooper Square is the result of the generosity and support of Faye Ginsburg and Mara Mills at NYU and we are a proud partner of the Center for Disability Studies they direct.
Robert Sember has been an important advisor to DANT and a continual source of joy and wisdom. We are especially thankful to him for helping coordinate our January 2017 Convening at The New School.
Anne Coates took great care analyzing the data from our Convening and compiling a field scan that helped us navigate our way.
Allison Lucas was pivotal in the final stages of this report and we are grateful for her careful reading. We are deeply grateful to Sylvia Janicki for her design template.
We could not have done it without these colleagues and comrades, and certainly not without the generous and timely support of the Mertz Gilmore Fund, which funded the production of this report. Leah Kraus, Senior Program Officer for Dance & Special Projects, has been invaluable.