Disability Representation and the Arts
By Damon McLeese, in response to Tilt West’s roundtable on Curation & Identity
In her opening statement at the recent Tilt West roundtable on Curation & Identity, prompter Jane Burke stated there was a “burden of representation” in her work as Curatorial Fellow of Textile Art and Fashion at the Denver Art Museum. I have long felt this sentiment, but never have three words so adequately and succinctly summed up the great tension of my entire creative career. I have worked with, in, and among the largest minority community in the country for more than four decades: people with disabilities.
Daily, I feel the weight of being an ally to, advocate for, and curator of art in a community I am both part of and not part of — depending on who is making the designation. The word curate comes from the Latin root cura, meaning “to take care.” As our discussion unfolded, it struck me how far these discussions have come and how much care had been put into the exhibit, Another Angle: “Asian American” Art, curated by Burke for the University of Denver Museum of Anthropology where we met. I was particularly struck by the paradox of discussing a fine art exhibit mounted in an anthropology museum at a private university. I was encouraged and reminded that things are changing and that boundaries are being broken down, even as progress and change are rarely linear, neat or simple.
There is a saying in the disability community: “boldly going where everyone else has already been.” While it is somewhat tongue in cheek, the saying describes very accurately so many aspects of our world. By conservative estimates there are between 54 and 58 million Americans living with a disability. In sheer numbers, this represents the largest minority group in this country, and it’s the only one you can join at any time. Disability does not care what age, race, ethnicity, or socio-economic status you have — disability does not discriminate. Yet the disability community is often left out of critical conversations that directly affect it. Throughout history people with disabilities have only been seen through a medical, programmatic, or academic lens. The medical model perceives disability as something that needs to be cured or fixed rather than as a normal — or even celebrated — part of the human experience. Thirty years after the passing of the Americans with Disabilities Act (ADA), people with disabilities still remain largely excluded from society. We no longer routinely warehouse them in institutions, but we have failed to integrate people with disabilities into many aspects of social and economic life. The unemployment rate for people with disabilities in this country, for example, hovers near 70%.
As I listened to Burke talk about the burden of representation and her desire to have the Asian American artists in the University of Denver show choose the art they would exhibit, I thought of how much trouble could be avoided if we included the perspectives of people with disabilities in discussions and planning particularly in the built and public art arenas. As disability activists have said, “nothing about us without us!”
Yet projects are routinely undertaken without the input from the proverbial “us” of the disability community. A recent example is the Hunters Point Library in Queens, New York. After 20 years of planning and a $41 million budget, the building was lauded as a “stunning architectural marvel” and a “beacon of learning, literacy and culture.” However, within weeks of its opening, there was also a class action suit filed in Brooklyn federal court stating the building was not fully accessible to people with disabilities, particularly those with mobility issues. The issue revolves around three floors of the library that are only accessible to those who can climb stairs. Yes, people with disabilities can access the top and the bottom floors, but we all know the good stuff is in the middle. And partial access is not what the law and inclusion pretty plainly require. Even one stair or inoperable door opener can mean the difference between inclusion and exclusion for someone with a mobility impairment.
Also in New York, the Vessel, an architectural piece of public art by British designer Thomas Heatherwick, was recently permanently closed due to multiple suicides. Prior to that, it too had come under fire for not being ADA compliant: the structure was only accessible on three of the 80 platforms, and often the elevators were instructed to bypass two of the three levels during high attendance times which meant that people who cannot climb stairs had access to only one viewing platform. The facility operators eventually agreed to make a one-of-a-kind, likely very expensive lift to have people with mobility issues be able to access more of the upper platforms, but not to everything. The Vessel is currently shuttered as Related Companies, the company that manages the site, ponders ways to keep people from jumping off the platforms. So far, their response has been to increase security, institute a buddy system (I don’t understand what this fully entails or even what it would do), and put signs up about mental health resources.
According to Jacob Alspector, a distinguished lecturer at the Spitzer School of Architecture at The City College of New York, “The Vessel is like some MC Escher nightmare,” referring to the famed graphic artist known for his staircases to nowhere. “It’s kind of relentless. It’s very gaudy, it’s very cold… people who feel alienated with the world may not be supported very well by an experience like that.” I saw the Vessel myself a couple of years ago pre-pandemic and had no interest in climbing 2500 stairs. I did not know the history of the project, but I felt it was a jarring and confrontational structure, especially compared with the serenity of the Highline, right next door. By contrast with the Vessel, the Highline is an exemplar of accessibility: its pathways are wide enough for two wheelchair users to traverse next to each other, and its Sunken Overlook at the 10th Avenue Square boasts a creative and integrated series of ramps.
Our collective avoidance and exclusion of people with disabilities in the creative world is not confined to buildings and structures. During the roundtable discussion, we touched on the importance of representation in movies like Black Panther and Shang Chi that feature stories of Black and Asian Superheroes. We rarely see similar representation of people with disabilities in popular culture. A 2019 study of broadcast media found that only 3.1% of characters had a disability (and even fewer were played by actors with disabilities) — yet, astonishingly, that was a ten-year high in representation. Given that people with disabilities make up 20–25% of the population, it seems we have a long way to go to bridge this gap of seeing.
One interesting representation of disability in the arts is artist Marc Quinn’s stunning 15-ton white Carrera marble statue called Allison Lapper Pregnant, unveiled in 2005 in London’s Trafalgar Square as part of the Fourth Plinth Project. Quinn’s sculpture is technically brilliant: A large, white marble statue made by an up-and-coming artist on view in one of the busiest areas of London. This type of marble has been used for big heroic sculptures, such as Michelangelo’s David and the statue of Abraham Lincoln in the Lincoln Memorial in Washington, D.C. However, Quinn’s sculpture depicts Allison Lapper, a woman with a visible disability. Lapper was born without arms and with shortened legs.
This sculpture received more public response than any other sculpture in the history of the Fourth Plinth project. As one might imagine, the response was mixed: some positive, some not so much, but never before had a piece of art sparked so much discussion about disability. When asked about the piece, Lapper replied, “I’ve explored these issues in my own work, through photography and installations, but I never would have been able to afford to do so in 15-ft high Italian marble, as Marc will be able to do with this sculpture. I love the fact that it has got the UK talking; that it gives disability a platform for debate. It’s a positive image of womanhood, even though it’s not going to appeal to those who wanted the Queen Mother up there.” It appeals to me: I love the in-your-face aspect of this work.
By casting Lapper in marble, a material typically reserved for the famous, Quinn has claimed a space for disability in much the way that artist Kehinde Wiley has reclaimed the heroic portrait by featuring young Black men he meets on the streets. But while Wiley is himself Black, Quinn is not disabled. Some may ask: Why is it ok for an artist without a disability to depict a disabled person? Personally, I have no problem with this, as I believe art should at its core help us understand each other. And it certainly encouraged engagement with disability. Lapper participated in this work as the model and the muse, and I find the sculpture beautiful. I only wish Lapper’s career had taken off the way Marc Quinn’s did.
As we continue to tackle issues of social justice and to shift paradigms at the intersections of art and identity, we truly do need to include people with disabilities not only in the final products, but also in the process. Imagine if the architecture firm that built the library in New York had had a person with a disability on staff, or if the Corporation that built the Vessel had listened to the warnings of people concerned about the suicide potential or lack of elevators. The idea of access cannot be fulfilled by a check box on a grant application. The ADA sets the bare minimum and not a very high bar (although both of the facilities violated even the floor for inclusion that the law establishes). The burden of representation, particularly for people with disabilities, cannot be an afterthought. At the end of the day, we are them and they are us.
Damon McLeese is a speaker, trainer, activist, and community artist who works at the intersection of art and disability. Damon specializes in unlocking the creative power of people regardless of their backgrounds, beliefs, or experiences. Whether in a corporate setting or in the classroom, Damon’s collaborative approach bridges the gap between creativity and community. His projects force us to look at creativity, ability, and disability in very different ways. Examples include a photography project for people who are blind, a street art project for people with Alzheimer’s, and a program that commissions corporate art projects by people with disabilities.
 Caroline Spivak, Hunter’s Point Library hit with lawsuit over accessibility issues, Curbed New York, January 13, 2020, https://ny.curbed.com/2019/11/26/20983702/hunters-point-library-queens-nyc-accessibility-lawsuit
 Eric Levenson, After latest suicide, the Vessel in New York City’s Hudson Yards ponders its future, CNN, August 7, 2021, https://www.cnn.com/2021/08/07/us/vessel-hudson-yards-suicide-wellness/index.html
 See Lauren Appelbaum, Number of Characters with Disabilities on TV Reaches a 10-Year Record High, Nov. 7, 2019, https://www.respectability.org/2019/11/glaad-tv-report-2019/ and 2019 Report by GLAAD, at https://www.glaad.org/whereweareontv19.
 Charles Josefson, The Fourth Plinth: raising the issue of disability, Disability Arts Online, August 7, 2017, https://disabilityarts.online/magazine/opinion/fourth-plinth-raising-issue-disability/