Messy, Hard, Oh-So-Worthwhile Work
Led by disability studies scholars and disability activists, a movement is underway to hold arts institutions accountable for the lack of accessible programming and accommodations for people with disabilities. Twenty-eight years after the passage of the Americans with Disabilities Act, the Bay Area, a major hub for both arts and culture as well as the disability rights movement, still has many museums that have done the bare minimum (or less) to welcome in patrons with disabilities, and funding to support access is rare. After serving as project manager to open a disability history exhibit, which was praised by attendees with disabilities as an unparalleled model of access, I have committed myself to sharing the lessons learned in gratitude to the many advisers who helped us on our journey. In particular, I want arts institutions to know that access in the arts can be done successfully, but the task is not easy, and the first step is gearing up for hard work, recognizing the importance of access, and committing to a long journey that ends with progress.
Initiated by Catherine Kudlick, director at the Paul K. Longmore Institute on Disability at San Francisco State University, Patient No More: People with Disabilities Securing Civil Rights, opened for the twenty-fifth anniversary of the Americans with Disabilities Act (ADA), on July 26, 2015.1 Free to the public, the 4,000-square-foot exhibit displayed for a six-month run at the Ed Roberts Campus in Berkeley, and for an additional three months at the San Francisco Public Main Library in summer 2017. It shared the story of how legal rights to access and nondiscrimination were first won for Americans with disabilities. Before we had the ADA, people with disabilities fought hard to demand implementation of Section 504, a small clause of the Rehabilitation Act of 1973, which stated that federal programs and facilities could not discriminate on the basis of disability. Heralded as the first disability civil rights act, Section 504’s passage was huge, but after a four-year span of disabled people working closely with the office of Health, Education, and Welfare to develop in detail what implementation might look like, the regulations still had not been signed, and people were fed up.
On April 5, 1977, disabled people all across the country decided they had waited long enough and organized protests outside ten regional Health, Education, and Welfare offices. All other activist efforts fizzled out within hours, but in San Francisco, protesters held on, bolstered by a broad network of support, from the Black Panthers to local labor unions. For twenty-six days, 150 disabled people and their allies occupied a federal building downtown. Known as the “504 sit-in,” it was the longest unarmed protest of its kind by any group anywhere.
In sharing this history with nondisabled people as well as people with disabilities, we celebrated the strength of the disability community and coalition building, brought to light some of the unknown contributors to this effort who had not yet had an opportunity to share their stories, and provided illustrations of the way disabled people provide creativity and innovation that can change the world to the benefit of us all.
We took the lessons from the 504 protests and used them as inspiration to build the best exhibit possible. The 504 protesters taught us that disability can be an asset; just as they found a way to occupy an inaccessible building by calling upon the savvy of disabled people, who navigate a discriminatory society every day and find ways to make it work, we too embraced the challenge of designing for disability as an opportunity rather than a constraint. We benefited from the innovations and expertise of people with disabilities, both in our core team and with external advisers, in our efforts to make our exhibit happen. Additionally, we strove to meet the model of access that the 504 protesters provided, where no meeting was held until an ASL interpreter was present and the end didn’t come until everyone was heard, no matter how long it took some people to talk. We committed ourselves to striving for a similar level of success, because how can you celebrate the history of achieving disability access in policy without an accessible exhibit to share this story?
Moving Beyond Compliance, Universal Design, and Competing Accommodations
We immediately saw that ADA code compliance would be insufficient for building an exhibit where the form could match content. The exhibit’s host site is home to over ten disability-focused organizations, so we knew that the majority of our patrons would be people with disabilities with a wide range of bodies and accommodation needs. Thus, access that took a bare-minimum approach would be devastating to our visitors.
Take, for example, the challenge of where to hang braille signage. ADA code requires braille to be hung at a minimum height of forty-eight inches; however, we knew that some of the patrons at the Ed Roberts Campus are not only blind but also wheelchair users, and wheelchair access requires that things be at a maximum height of forty-five inches off the ground. After being stuck in this conundrum for a bit, we took action. We built “braille rails” forty-five inches above the ground and apologized to our six-foot-tall blind patrons (far more numerous than we at first realized) for their discomfort.
While code compliance is necessary, it will not guarantee access. Access evolves with time and context, and the work of designing for access is more of an artistic practice than a scientific one. As blind engineer and scientist Joshua Miele shared with our team at the outset of our project, “If you think access is going to happen by following code compliance, it’s like saying that the best food you can eat comes from precisely following a recipe. Everyone knows that in reality, you get the best stuff when you break out from the cookbooks, taste, adjust, to create a dish that thinks outside the box.”
While we were prepared for the limits of ADA code compliance, we were more surprised to discover that “universal design” — the concept that we can design the world in a way that does not create barriers regardless of people’s bodies and needs — would have similar limits. Universal design is praiseworthy, but it neglects the realities of the nitty-gritty work that designing for disabled bodies entails. In our first “access charrette,” we assembled a diverse group of disabled people to share their needs and dreams for exhibit access. While our blind attendees noted how useful motion-activated audio players would be, providing verbal description of everything on a kiosk, autistic experts warned that such a feature would be a sensory-overload nightmare. This presented a “competing accommodation”: a barrier for one group resulting from creating access for another. Our solution was to provide an audio track for blind visitors on rentable iPods or accessible by a smartphone. This solution was not as easy for the blind to use as the original proposed plan but was an important compromise.
While many disability advocates have led the charge calling for universal design, others have raised concerns. Disability studies scholar Aimi Hamraie traces the history and discourse of universal design and explores how efforts to promote universal design have ironically erased disability. Hamraie writes:
If ableism is the belief that ability is better than disability and that disability must be eliminated, then arguing that disability is a “contextual phenomenon” (or functional limitation) that thoughtful design can “eliminate” has the unintended effect of aligning Universal Design with post-disability logics, rather than with disability acceptance. What is lost is, ironically, precisely what Universal Design discourses appear to promise: a world that is designed with everyone in mind.2
In fact, Hamraie ends the article praising Patient No More: “Rather than making accessibility invisible, the exhibit and these design features showcased disability as an aesthetic and functional resource. … These design strategies signal disability acceptance and materialize the aspiration for accessible futures.”3
As we continued to discover just how messy and frequent competing accommodations can be, we decided that rather than universal design, a better goal was balance: that everyone, regardless of their disability or disabilities, be able to have a powerful experience interacting with the exhibit. Not every piece can be 100 percent accessible to every person, but if everyone has an opportunity to engage with something (and also knows how to find the way for engaging with that something), it is okay for some elements to be limited in their accessibility.
For example, we wanted to build some interactive stations that would help people link the exhibit’s history to disability justice issues today. Our first idea was to have a selfie station where people could write down their slogan “I’m #PatientNoMore because …” on a whiteboard, mounted to look like a protest sign, and pose for a picture that would be shared on social media. If we had been working within the framework of universal design, such a component to the exhibit would not have been possible, or certainly not on our tight budget. Photos are obviously a visual medium, and though they can be made accessible with verbal description, we could not find a way to make it instantaneously accessible to blind visitors to the exhibit. However, we still felt this piece was worthwhile and pushed to think of a workaround. We found the solution by accepting that this piece would not be entirely accessible to people with vision impairments, and then built a complementary piece with nonvisual access in mind. In the adjacent kiosk, we offered a bullhorn that allowed guests to shout their 1970s “I’m #PatientNoMore” slogan and hear it immediately played back, generating audio for sharing on social media. This kiosk was, of course, inaccessible to visitors who could not speak or hear. Exhibit signage and the verbal description tour guided people to think of these two pieces like a “choose your own adventure” approach to exhibit access: Find what’s right for you, and enjoy!
By accepting the real challenges of accessible design, we were free to do more; we started truly designing for people with disabilities — the people we knew on our team and those whom we had enlisted to share their needs throughout the design process — rather than designing for disability in the theoretical sense, pleasing few.
Tips for Promoting Access in the Arts
After Patient No More opened, we held our breath for weeks, fearing that we would learn about a group we had neglected to accommodate. Fortunately, we received praise instead. Certainly, I can name more access features that we could have done with additional funds or time, but our visitors recognized the progress that had been made and celebrated the achievement. All the work paid off each time we visited and observed people with all different bodies and abilities interacting with different components of the exhibit. One visitor shared, “It’s bringing our forgotten history to life, it’s validating us as people, and it’s comprehensive and magnificent in detail, presenting our event as a seminal one in the history of this country. For a forgotten people who are still fighting life and death struggles, this is an overwhelming validation.”
Our success left our team feeling deeply obligated to pay back all the people who had patiently guided us along the way by sharing what we had learned and by participating in advocacy efforts to bring more access to arts programming and exhibitions. We have since led trainings at local museums and given presentations for arts professionals to share these experiences as far and wide as we can.
Frequently, we have encountered museum professionals who know they have access problems but are not doing anything to rectify them because they are just stuck; ADA compliance has not fixed the problem, and they just cannot find a “universal design” solution. With the caveat that access cannot be covered by any checklist, we provide a list of takeaways, which we have seen help get arts professionals out of the rut of knowing their access programs are insufficient but waiting around in fear of a lawsuit rather than acting. We tell them the following:
- Be direct about whom a certain piece of art or program is intended for to make sure the accommodation makes sense before wasting resources on a “round hole–square peg” scenario. Some of the museum professionals we have worked with have avoided moving forward with accessible programming because they spin their wheels thinking about how one specific piece can be accessible. For example, some wonder how artwork that is a deeply complicated array of visual components can be made accessible to blind and vision-impaired patrons. Or similarly, how does one convey a soundscape experience for deaf and hearing-impaired patrons? (Reading a transcript with basic descriptions like “a tree falls, a bird chirps,” and so on would be flatter than the experience of taking that in through auditory senses, and a waste of time). In these cases, the best approach is something that does not attempt a direct translation but rather achieves a similar end experience. For example, you might solicit the help of a poet to write the verbal description of the highly visual piece of art. Or you could create an accompanying video of a sign language interpreter who specializes in performance and art to interpret the experience presented in the soundscape.
- More often than you think, access solutions can be low-tech and low-cost. In the long term, we must fight for making access design as inclusive as possible from the start. But in the short term, always be on the lookout for creative workarounds. Here are two examples:
- During our recent work with a local museum, they received feedback from their vision-impaired guests that their benches and stools were hard to see, as they were the same color as the floor and walls. The temporary solution? Add a relatively small piece of reflective tape.
- A museum with large, stunning glass doors at the entrance to one of their collections did not have any push buttons for wheelchair riders (and adding them would have cost an exorbitant amount of money due to the unique architecture of the doors). The solution? Make sure when wheelchair riders are greeted at admissions that someone mentions the preferable, accessible entrance to this collection.
- Put it on the web. Blind and low-vision museum-goers benefit enormously from verbal description tours (traditional guided audio tours do not count). In the Bay Area, a group called the “Blind Posse,” blind professionals and allies who work collaboratively on this issue, has been meeting with museums to ask that they provide handheld devices as well as smartphone access to well-produced verbal description tours. While museums are working to develop such tours, a temporary solution is to provide written verbal description (developed by your curatorial staff after consulting with audio description experts on best practices and approaches) on your website, allowing blind and vision-impaired people to access it via their phones and read it with their own text-to-speech software. Again, this is only a short-term solution, as good verbal description tours are read by professional voice actors and available on devices for people without smartphones, but still, this is better than nothing. And once you have the written language describing some of your pieces, consider sending it to all your docents as well. You can also do this with wayfinding instructions to orient blind and low-vision patrons in the space (which is especially important for safety).
- Be transparent about access, including what you are not yet doing for people with disabilities. When we began soliciting stories from people with disabilities about their museum-going experiences, so many people shared that they wished museums would be more honest and transparent about what they can and cannot provide in advance on museum websites, through brochures, and from information desk staff. For example, if you have an exhibit that features a lot of sound, there is no escaping the fact that it is just going to be miserable for someone susceptible to sensory overload due to a disability, like autism. Make sure to say this somewhere on your website, and recommend other programs and exhibitions that are better suited for these patrons, or provide information on times when someone can experience the exhibit without the additional visual or auditory input, if available. Lastly, offer a recommendation of a quiet space where someone can go in the museum if they decide they still want to experience the exhibit but need a space to recover after.4
- Constantly ask, Is your aesthetic preference tied to ableism? Often the hardest thing for artistic people to embrace in the name of access is a requirement that things sometimes be bigger. A bigger button means people with limited dexterity are more likely to be able to press it; larger fonts provide better access for vision-impaired people and also result in less text, which is more accessible for people with learning disabilities or developmental disabilities but frustrating for curators. People often veto these forms of access on the basis that they are “ugly,” which means we need to ask, Is it inherently ugly, or do we interpret it as ugly because we have grown up in an ableist society? Ask this, and you might also be able to develop something cutting edge, because there is an opportunity for aesthetic access innovation.5
- Solicit the expertise of people with disabilities at all stages of this work, and compensate disabled people for their time. Many museums have begun assembling access advisory committees. Others hire people with disabilities inside museums or assemble internal access committees. Remember that disability expertise needs to be considered not just as an afterthought before a new exhibition opens, when it is typically too late to do anything but the bare minimum. And remember that what counts as access for one person may be totally different than the needs of someone else with the exact same disability, so do not ask a solo disabled person to represent entire diverse communities. Think of people with disabilities as you would any trained expert: individuals who have valuable knowledge based on years of training.
- Cultivate a culture of access that extends throughout your whole institution. While it is exciting to see museums increasingly creating access coordinator positions, developing an accessible institution requires that everyone assume responsibility for access, from the janitors and security guards to the curators, educators, and directors. Bring in people with disabilities for trainings that introduce staff to disability history and culture while teaching tips for how to best serve disabled patrons and support staff with disabilities. Whenever possible, build in opportunities that may result in recruiting permanent staff members with disabilities; having a diverse staff that includes people with disabilities reflects well on the institution, brings new perspectives, and encourages a broader range of patrons.
- Incorporate images of a variety of people with disabilities into all museum publicity materials both online and in print (and strive for these images to show a diversity of disabled people too!).
What Funders Can Do
When I speak with museum professionals, the number one reason they give for their inadequate access programs is insufficient funding. While access can sometimes require funds, often this is simply an excuse. As a result, grantmakers in the arts have an important role to play in supporting the disability movement’s push for greater access in the arts. First, offering access grants for programs or exhibitions can help museums take that first leap forward, hopefully paving the way for them to build access costs into their future budgets. Second, grantmakers can ask their grantees if they have a plan for how their projects or programs will be made accessible to people with disabilities.
Many museums are not even thinking about people with disabilities, and I have met many arts professionals who confess that they falsely assumed disabled people would not want to come to museums. People doing this work talk frequently about when the tipping point will come when access will be at the forefront of the conversation. Grantmakers can be the harbingers of that tipping point.
A confession to close with: I used to be the kind of academic who preached about the importance of designing the built environment to avoid all barriers for people with disabilities without having attempted to do so myself. After my academic self had to transition into a project-manager self to develop Patient No More, I learned that the way access is often promoted with a basic goal of “everything accessible to everyone all the time” might not be the target for which museums and arts programming need to aim.
While I acknowledge the value in educating about universal design, I also now realize it can set future designers up to fail. To truly motivate people to strive for access, we need to start being more real about what this work looks like at the nitty-gritty level and talk about what can be done when 100 percent access is not a possibility, as it never will be. Access work is an art, not a science. Fortunately, arts professionals tend to be pretty artistic. We just need them to roll up their sleeves and dive in, with arts grantmakers cheering them on. This will be how progress happens.
Emily Smith Beitiks received her PhD in 2011 in American Studies with a focus on disability from the University of Minnesota. She now serves as the associate director at the Paul K. Longmore Institute on Disability at San Francisco State University and is the coordinator for Superfest Disability Film Festival, the longest-running festival of its kind in the world.
- This deeply collaborative project included curator/graphic designer Fran Osborne, designers Pino Trogu (structures) and Silvan Linn (interactives), and media technology expert Tim Kerbavaz.
- Aimi Hamraie, “Universal Design and the Problem of ‘Post-Disability’ Ideology,” Design and Culture 8, no. 3 (2016): 17; http://dx.doi.org/10.1080/17547075.2016.1218714.
- Ibid., 19.
- Visit our exhibit’s access page for an example of the categories we used and the level of detail we provided: http://longmoreinstitute.sfsu.edu/patient-no-more/access-features.
- See this exhibit for inspiration: https://www.cooperhewitt.org/channel/access-ability/.