The Cultural Apartheid of Disability
A Conversation between Judith Smith and John Killacky with Resources and Tips
Americans for the Arts 2017 Annual Conference, Friday June 16, 2017 Universal Design and Embracing Disability within Equity.
John Killacky: Judith Smith and I met in the early 1990s when I worked at the Walker Art Center in Minneapolis. The Americans with Disabilities Act of 1990 had recently mandated equal access for people with disabilities and Judy’s company was at the forefront of a burgeoning disability arts movement, influenced by the earlier racial, women’s, and LGBT civil rights struggles. Identity and affirmation were politically infused into aesthetics.
At that time, there were few visible role models for artists with a disability and little access to training and professional development for them to grow. Initially, work emerged from a therapeutic medicalized model and audiences responded with the ablest “inspiration porn” trope that sanctifies and objectifies people with disabilities.
Disability is the mother of invention. We have been cattle truck lifted onto an outdoor stage. In Siberia, we had to charge my wheelchair batteries by driving them around in a Fiat and swapping them out daily.
Judy Smith: In 1987, Founding Artistic Director Thais Mazur had the creative vision to gather a group of dancers with and without physical disabilities to explore dance and create a piece.
The piece was about a young dancer who becomes disabled, can no longer “dance” and then years later begins dancing again—in a wheelchair. It premiered at the 1988 “Furious Feet Dance Festival for Social Change” produced by the Dance Brigade. We were well received by both the dance community and the disability community. What first started as a one-off project quickly led to numerous requests for performances. Dance in the Bay Area was very experimental, so AXIS Dance Company fit in well. The disability community was thrilled to see themselves reflected on stage. At the time, we did not know that this dance form was actually springing up all over the world.
We started doing outreach early on with a monthly community dance jam because people requested a place where they too could do integrated dance, called “mixed ability dance” at that time. The term is still used, but AXIS uses the term “physically-integrated dance,” which came out of the UK in the '90s.
Our artistic and engagement programs are inextricably linked. We realized that if we wanted trained disabled dancers, AXIS was going to have to be that training ground. Even today, it is virtually impossible for dancers with disabilities to get training the way nondisabled dancers do.
Audiences liked our work, but it confounded funders who considered it to be “therapy” and not dance. Critics did not know how to review it. One well-known critic said he would never bother to come see us because it was not “dance.” And, to be honest, our early works were mostly directly about disability and it was the start of a new dance form, so the work was rather sophomoric. If you look at what ice skaters and gymnasts are doing today, it is much more technically difficult than it was thirty years ago. This did change when we started commissioning well-known choreographers, composers, and designers.
John: Well-meaning early adopter presenters, myself included, were clueless as to what was needed to present the work of Judy’s company, AXIS. I invited them to be part of a series entitled OUT THERE, which happened in January. Judy suggested that this might not be the best time to bring the company to Minneapolis, as the weather and getting around might be an issue, but it fit my curatorial construct.
I had booked them in a hotel next to the theatre, and the theatre itself was an old vaudeville house, so no steps to an elevated stage. However, it was January and quite cold with lots of snow, so on the way over to the theatre, Judy hit some ice and her front wheel broke off. Having become disabled, myself, years later, I now understood why a different season might have been better from the company’s perspective.
Judy: Presenters are drawn to the work for several reasons and I hope the first and foremost is artistry. That said, an exciting aspect is that AXIS and others like us give presenters the opportunity to connect with their disabled communities—often for the first time. This work helps them look more broadly at diversity, equity, and inclusion. It can also be intimidating for presenters and we have had some interesting experiences, because while we will not perform in venues that are inaccessible to our audience, we often have less than accessible backstage areas.
However, disability is the mother of invention. We have been cattle truck lifted onto an outdoor stage. In Siberia, we had to charge my wheelchair batteries by driving them around in a Fiat and swapping them out daily. Feral dogs chased us on the tarmac in Moscow because we could not be driven to the plane like others. In Germany, we changed in a broom closet with a skeleton. Less entertaining is when our wheelchairs were destroyed by airlines or when we have had to roll around in sub-zero temperatures because there is no accessible transport.
One of our biggest early successes was planning and co-curating the first International Festival of Wheelchair Dance in Boston, in 1997 with Jeremy Alliger and Dance Umbrella. We brought fourteen companies from around the world together. It was eye-opening and really a turning point for me and for AXIS. Some of the work coming out of Europe and South America was so much aesthetically stronger than what was happening in the USA.
John: As the company progressed, Judy realized that they had to become better as dancers and improve the level of choreography and design. Up until then, they had gotten primarily sympathy reviews through the “inspirational porn” lens, peppered with such gratuitous praise as “overly courageous,” “brave,” “special,” or “superhuman.” Even today, I still read how truly brave these people with disabilities were to get up on stage; how remarkable and special they are to be making work against all odds. However, they work hard at being artists and deserve to be taken seriously.
Judy: In 1997, we stopped doing work directly about disability, started commissioning well known choreographers, and expanded and formalized our education program. The first choreographer we commissioned, with support from Dance Umbrella, was Bill T. Jones. Naïveté allows you to do things that you might not do otherwise! Bill was intrigued when approached because of Arlene Croce’s review of his work Still/Here. Without actually seeing the work, she had chastised it as “victim art” and went on to say there was no place for old, fat, sick, or disabled people on stage. Bill felt a lot of pressure because of that review and told me that we could not fail. We had to make a strong piece.
The great thing about commissioning was that AXIS got exposure to training, to other points of view, and our work was much stronger. It also gave critics context to talk about our work in a way that they did not have before. What is very rewarding to me is that the choreographers also got something out of working with AXIS and with a very different, more expansive palette of movement. To date, we have commissioned over thirty-five new works. Choreographers are interested in integrated dance, as evidenced when we had sixty-five choreographers apply to work with us in an R&D residency at the Maggie Allesee National Center for Choreography.
Our engagement programs also continue evolving. We added a summer intensive in 2005 and have had almost 500 dancers from a dozen countries attend. We added a Teacher Training Institute three years ago and are now doing several around the country annually. We started working with veterans with a piece about resilience, choreographed by Joe Goode.
Twenty Seven Years After Passing the ADA Legislation
Most arts groups, including the Flynn Center in Vermont, provide accessible parking spaces, accessible and companion seating, hearing assist systems, accessible restrooms, accessible elevators, and power-assist buttons at entries. The Flynn’s new box office features a shelf 33 inches from the floor to facilitate transactions from a wheelchair. However, architectural accommodation does not equate with full inclusion.
Providing communication aids such as assistive listening devices, TTYs, and sign language interpreters, support staff, adapted equipment, and making registration available by phone, or providing services at an alternative accessible site are all methods of programmatic access.
What are programmatic barriers?
- Communication barriers
- Programs in inaccessible buildings
- Registration not available by phone
- Visiting field trip sites that are inaccessible
- Activities that fail to utilize all senses
- Information not available in different formats
Attitudinal barriers are defined as a way of thinking or feeling, resulting in behavior that limits the potential of people with disabilities. Often it is not the disability, but rather the attitudes of the public and those providing recreation services (public or private) that limit activities of people with disabilities.
What are attitudinal barriers?
Issues in Our Field that Need to be Improved
John: Flynn Center patrons’ access needs can be requested online, in person, and through a voice/relay system. However, there is much work to be done with online access. An ADA audit found audio descriptions are needed for images so that people with visual impairments who use screen readers can “hear” an image. Further, ADA recommendations include adding captions to videos for people who are hard of hearing. When I see brochures and websites from presenters, they are too wordy, print size is too small, and reverse black ground against white print is not inclusive, although loved by designers. Few organizations offer open captioning for lec-dems.
Programmatically, the Flynn, like our peers, offers American Sign Language (ASL), when requested, as well as large-print and braille programs. The wonderful women’s acapella group Sweet Honey in the Rock has traveled with its own ASL interpreter for years. On their last visit to the Flynn, we had a request for audio description from patrons who were visually impaired. This was a first for the group, and they were thrilled.
Over the years, many visual artists and choreographers resisted having audio description of their work. I remind them that once they exhibit or perform, the work is not theirs any more. I have been told, “Well, those people don’t come anyway.” I always answer, “And why would they if they are not invited into the experience of your work.”
For a performance of Thodos’s Dance’s A Light in the Dark, about the lives of Helen Keller and Anne Sullivan, we provided braille study guides and the company led touch tours on stage so audience members with a visual impairment could better access contextual elements of the production, such as costumes, props, and scenery. We also had a Flynn teaching artist collaborate with a VSA VT teaching artist, storyteller, and comedian René Pellerin, who is both deaf and blind, for pre-performance workshops in various classrooms. These in-classroom presentations made the performance richer for all students who came.
AXIS since 2014
Judy: In 2014, AXIS received a Doris Duke National Projects award to host the first ever National Convening and six Regional Convenings, The Future of Physically Integrated Dance in the USA. The National Convening attracted over fifty activators: dancers and choreographers; presenters and funders; educators and activists; service organization leaders; and policy makers. Another 250 activators were gathered at the Regional Convenings. Dance/USA was our media partner and has really embraced equity in dance for people with disabilities.
At the annual Dance/USA conference, AXIS hosted a pre-conference focus group supported by The Andrew W. Mellon Foundation, a panel presentation on inclusive dance happenings around the country, a class and teacher training taught by AXIS Artistic Director Marc Brew, and a meeting to establish an affinity group of inclusive dance practitioners.
A lot of momentum has been generated over the last three years by AXIS, Dance/NYC, Dance/USA, and other dance service organizations.
Universal Design for Learning (UDL) Principles for Arts Instruction
John: Just as architecture has embraced Universal Design concepts to make our facilities more accessible to older people, people without disabilities, and people with disabilities, we too must incorporate Universal Design for Learning (UDL) principles into our arts instruction.
As part of our in-school arts education work, the Flynn partners with VSA VT and Burlington City Arts at the K-5 Integrated Arts Academy to provide professional development for teachers and teaching artists in UDL, a set of curriculum development principles that considers multiple learning styles. These are particularly relevant for students with physical and cognitive disabilities, but also assist kinesthetic learners, paving the way for rich learning experiences in the arts for all students, including English language learners.
Next season, we are expanding this multi-sensory work to accommodate gallery visits by people at varying stages of dementia to respond to art and participate in a shared experience with caregivers. Examples of multi-sensory ways to respond to art include using movement, voices to create sound other than language, notepads and markers to make shapes that represent ideas or feelings, and language, when available.
Even for programs, classes, and camps not specifically designed for individuals with disabilities, the Flynn uses UDL principles and works with our teaching artists so that accommodations and adaptations are a welcome and regular part of our practice for all.
Engaging Disability Communities
Judy: AXIS has had a great response from presenters who look to AXIS and other integrated companies to help them engage their disability communities, often for the first time. The most important thing presenters can do is to establish partnerships with existing disability organizations such as independent living centers, disabled sports/recreation organizations, and campus disabled students services. Many presenters have made great efforts by removing seats to accommodate more wheelchair accessible seating, hiring ASL interpreters, and providing audio description. I encourage these presenters to keep finding ways to engage the community and not let their effort be a one-time thing.
AXIS’s residencies have led to organizational shifts in approaching accessibility and inclusion—great models are the Flynn Center for the Performing Arts, in Burlington, and Tigertail Productions, in Miami. Most of our experience has been positive.
One negative experience was with a presenter that organizes international tours for American dance companies. AXIS was chosen, but it seemed that when the real logistics of access became apparent, the presenter backed out. This program has since engaged two other companies to work with disabled communities abroad; neither company has any disabled dancers and very limited exposure to inclusive dance. One artistic director in particular said that his company felt way over their head. They did their best, but it was really challenging. They did love the work and have since sent dancers to AXIS trainings.
Lessons Learned at the Flynn
John: To better understand the needs of individuals on the autism spectrum and their families, the Flynn worked with Theatre Development Fund’s Autism Theatre Initiative, colleagues from VSA VT, Howard Center, and an advisory committee. All staff learned to be more welcoming and not frown upon or curtail fidgeting and sounds. In this process, we had to challenge our own misconceptions, working with advisers to explore and learn about what we did not know.
We found visitors on the autism spectrum have different needs, so adaptations are not a one-size-fits-all solution. Our initial ideas were complex and varied and the community urged us to simplify and understand that the biggest barrier is feeling unwelcome and ashamed of behaviors that are atypical in an audience setting.
We worked with the Childsplay ensemble to implement a new audience approach with the presentation “Schoolhouse Rock Live!” in a sensory-friendly manner. Online, we posted social stories, giving those on the autism spectrum a preview of what to expect. No changes were made in the script, but light levels were increased in the house and sound was lowered. We created activity and quiet spaces in the lobby and gallery and made character cards, fidgets, and noise-canceling headphones available for use. After the show, the actors met excited kids in the lobby. Encouraged by this success, we decided to adapt all family matinee shows in this manner, a testament to how “special needs” benefit all patrons and enhance everyone’s experience.
For the gallery, we create social stories online for exhibitions and make headphones with soft music and fidgets available, simple augmentations to provide a more welcoming environment. Social stories are good for people of all ages and a variety of disabilities, including dementia.
On a more intimate scale, the Flynn has been working with Chicago Children’s Theatre and their multi-sensory works created specifically for young people on the autism spectrum. Their intimate production, for twelve students at a time, creates a safe and exciting theatrical environment for young people with autism and their families and educational support teams. The company’s artistic director, Jacqueline Russell, taught a workshop for twenty-five educators and caregivers from Vermont and New York, sharing her experiences and providing tools for us to better provide access and work with children on the autism spectrum.
Next season, we are commissioning Jacqueline to create a new work with local theatre artists designed specifically for young people on the autism spectrum, building out our own internal capacity to create multi-sensory, interactive theatre, music, and storytelling to engage children who rarely get access to theatrical experiences.
People with disabilities are excluded from cultural participation for most workshops and classes at arts organizations. Two Flynn programs help redress this exclusion. Movement for Parkinson’s, initially developed by the Mark Morris Dance Company, builds the participants’ range of motion, memory retention, strength, flexibility, and balance. Our Parkinson’s group, led by local choreographer Sara McMahon, began performing, surprising themselves, as well as challenging stereotypes. Breaking down the isolation for the participants and their caregivers has been an added benefit.
ASD Drumming, a partnership with VSA VT, is designed for children on the autism spectrum and their families. The workshops include hands-on music activities using special drums that filter out the most disturbing tones for people with sensory issues. Children create their own rhythms, individually and in collaboration with others, building social skills while they express themselves musically. This is a unique and powerful experience they do not have access to elsewhere.
Lessons Learned at AXIS
Judy: AXIS has always only held events at wheelchair accessible venues that can accommodate a large number of wheelchair users—which is no small feat! We also have performances ASL interpreted. We are delving more deeply into audio description of performances, videos, and photos. Audio describing contemporary dance is more challenging than describing theatre or still photos. AXIS dancers are adept at multi-modality teaching as well and we take advantage of professional development opportunities.
We recently released a report in print and PDF format with multiple modes of accessibility as a priority. We are making sure our website is accessible to people with many kinds of disabilities and access needs by following web design accessibility standards.
All too often, artists with disabilities are given empathetic reviews replete with that ‘inspiration porn’ trope of heroism overcoming tribulations, but ultimately they are not taken seriously as artists. Aesthetic validation is far more important than sympathy.
Marketing for Artists with Disabilities is Complicated
John: Many artists with disabilities not want to be defined by their disability. Jazz pianist Marcus Roberts was presented for his genius to a mainstream audience of jazz lovers, but since he is blind, we were able to do some incredible outreach with the Vermont Association for the Blind and Visually Impaired.
Visual artist Larry Bissonnette, although a world traveled spokesperson for autism, did not want his exhibition framed entirely within a disability context. We reached out to art aficionados and critics, as well as to the autism community.
Judy: AXIS is a contemporary dance company doing physically-integrated dance, meaning we have dancers with and without physical disabilities.
I always say that when it comes to integrated dance, “Seeing in Believing.” It is not like ballet, where anyone can conjure up an image. I always like to show one dancer with a disability and one without. As a disabled person, when I see a poster with a disabled person on it, or an article with a photo, I am going to take a second look. This is a small way that we make sure we reach people with disabilities who rarely see images of disability in the media.
We also strive to make sure our nondisabled dancers are recognized, because they are equally important to the work. AXIS is not a disabled dance company or a wheelchair dance company. It is important that presenters learn how a company wants to be represented and how to represent people with disabilities.
John: There is a fine line in promoting artists’ work appropriately. All too often, as I mentioned, artists with disabilities are given empathetic reviews replete with that “inspiration porn” trope of heroism overcoming tribulations, but ultimately they are not taken seriously as artists. Aesthetic validation is far more important than sympathy. After all, the Flynn is presenting them for their artistry, not their disability.
In disability circles, we are reminded to always lead with the person first. It is better to say “a person who uses a wheelchair” versus “a wheelchair user.” Never say “wheelchair-bound” or “confined to a wheelchair.” (The only exception is in the deaf community, where many want to be referred to as a “deaf person.”) With artists, I always lead with the person and art form, and then add an identifying contextual tag when and where appropriate.
While people-first language is a good policy for organizations, it is also important to recognize and respect that within disability communities and disability pride movements; there are individuals who prefer to call themselves a disabled artist, a blind person, etc. As staff or volunteers at a cultural organization, accepting a correction from an audience member or visiting artist about their preferred means of identification without the cultural organization’s staff member or volunteer answering with an explanation of the intent or defensiveness is also an important skill.
Along this journey, ongoing staff training has been important, and ongoing community input from people with disabilities essential.
Interacting with People with Disabilities
- Relax and be yourself.
- Do not make assumptions about what someone can and cannot do.
- Speak directly to the person with whom you are interacting.
- Do not avoid using common idioms like “see,” “walk,” or “hear.”
- Do not let one bad experience set the standard for future interactions.
- Treat adults as adults.
- Do not mention the person’s disability, unless he or she talks about it.
More Common Courtesies
- Speak to an adult with a disability as an adult, not like a child, or in a patronizing way.
- Listen carefully to any instructions.
- Each person's disability is unique; they know the best and safest way to assist themselves.
- Allow the person to remain as independent as possible.
- Be considerate of the extra time it might take them to get things done or said.
- If you do not know the answer to an access inquiry, do not guess.
- Relax and be yourself.
- Treat the individual with dignity, respect, and courtesy.
- Listen to the individual.
- You likely have more in common than not.
Assisting People with Disabilities
- Offer assistance if inclined, but wait for instructions.
- Say, “Would you like assistance?” instead of “Do you need assistance?”
- Do not ask someone to prove his or her disability.
- If someone asks for an accommodation, trust they need it.
Kinds of Disabilities You or Your Staff May Encounter
- Respect mobility equipment as a part of their body.
- If talking to someone in a wheelchair for a long time, consider getting down to eye level.
- Respect access.
- People use wheelchairs for a variety of reasons.
- Do not push, lean on, or hold onto a person’s wheelchair unless asked.
Deaf and Hard of Hearing
- Get their attention.
- Let the person take the lead in establishing communication modes (lip-reading, sign language, writing notes).
- Speak in a normal tone.
- Speak directly to the person, not to the interpreter.
- Use gestures and body language.
- Position yourself in good lighting.
- Do not assume they can read lips.
- If they indicate they do, do not enunciate and keep objects away from your face.
- Rephrase rather than repeat a sentence someone does not understand.
Blind and Visually Impaired
- Identify yourself upon approaching and leaving.
- When giving instructions, be descriptive and concise: “It’s three short blocks on your left.”
- Talk directly to the person.
- Use clock to orient to objects.
- Talk in a normal tone.
- Offer your elbow to guide them.
- Do not leave without excusing yourself first.
- Ask them to repeat something if you did not understand them.
- Do not interrupt or finish their sentences, pay attention, be patient, and wait.
- If you are not sure whether you understood them, repeat what you heard for verification.
- A quiet environment makes for easier communication.
- Do not assume they also have a cognitive disability.
- Be patient and give the person time to complete their task.
- Give simple, literal instructions.
- If in a public area with many distractions, consider moving to a quiet or private location.
- Be prepared to repeat what you say, orally or in writing.
- Do not “over-assist” or be patronizing.
- Be flexible and supportive.
- Take time to understand the individual and make sure the individual understands you.
Assistive technology may include:
- Alphabet board or computer to communicate.
- Facilitated communication with persons with ASD.
There are only two questions staff may ask of a person with a service dog:
- Is the dog a service animal required because of a disability?
- What work or task has the dog been trained to do?
Staff cannot ask about the person’s disability, require medical documentation, require a special identification card or training documentation for the dog, or ask that that the dog demonstrate its ability to perform the work or task. Vests are not required on the animal.
Recommendation for Funding Agencies
Federal, regional, state, and local government funding agencies ask for our disability plans as a criterion for receiving tax privileged funding, but then grandfather in and ignore lack of programmatic implementations, excusing real accommodation as putting too much of a financial burden on organizations. This perpetuates a cultural apartheid that exists for artists and audiences with disabilities. Funding agencies need to stop funding inaccessible programs.
This work is ongoing; there is much to do. Inclusion is a civil rights issue, but equally as important, it can be an organizational asset.