Antoine Hunter, left, and NEVE Mazique, two Black dancers wearing gold and white, one of them wearing a crown, are posed against a dark earthy background. They both glow under the stage lights. One lies on the ground with one leg up, the other leans sideways in their wheelchair one arm out with fingers extended, one leg up with their foot balancing on the other dancer’s leg. (Photo credit: Richard Downing/Sins Invalid)
On July 26, 1990, President George H.W. Bush signed the Americans with Disabilities Act (ADA) into law. At the signing ceremony, which was attended by the media, disability activists, and members of Congress, Bush remarked that “with today’s signing of the landmark Americans with Disabilities Act, every man, woman, and child with a disability can now pass through once-closed doors into a bright new era of equality, independence, and freedom.…It’s been the work of a true coalition, a strong and inspiring coalition of people who have shared both a dream and a passionate determination to make that dream come true.” Indeed, it took years of work by disability activists and the wider disability community to get the ADA passed. This work manifested in many different ways: cross-disability community building; the famous 504 Sit-in, which was a response to poorly defined regulations in the Rehabilitation Act of 1973; and protests that ranged from regional fights for accessible public transit to the March 1990 “capital crawl” in Washington, D.C., which brought national media attention to the disability rights movement. (Much of this history is covered in the 2019 Netflix documentary Crip Camp.)
The ADA was, at the time, historic legislation for people with disabilities. It prohibited employers from discriminating against applicants with disabilities; ruled that businesses with 15 or more disabled employees had to provide reasonable accommodations for them (provided said accommodations would not cause “undue hardship” to the employer or business); required that public buildings and services be accessible to a wide variety of disabled people; regulated public and private transportation to increase accessibility for disabled people; and provided standards for wheelchair users and visually impaired people. As the ADA turns 30 this year, it’s worth considering what has changed and what hasn’t, and the importance of continuing to move towards inclusivity for all disabled people. Activist and Disability Visibility Project founder Alice Wong contends that the ADA has made concrete changes for disabled people: “The way I work and participate with the world would not be possible without the ADA. Every time I see strollers and carts being pushed at a curb cut, it makes me smile.” But the legislation still has significant flaws and loopholes.
For instance, the number of buildings that remain inaccessible to wheelchair or cane users—and the issues around “historic preservation” of older buildings—illustrate the legislation’s limitations. New technologies and economies regularly fail to consider disabled users: Transportation startups like Lyft and Uber have come under fire from the disability community for their overall inaccessibility and blatant discrimination. Although the breadth of and necessity for disability activism is starting to reach the mainstream—thanks in large part to the internet—there are still attitudes about disability that are rooted in ableism and long-held stereotypes. Wong notes that ADA violations happen “all the time, with little recourse unless a person takes legal action.” More insidious, she adds, is the “misinformation about ADA-related lawsuits, that unfairly portrays disabled people as trying to ‘pull a fast one’ or faking their needs for ‘special treatment.’”
The idea that disabled people are trying to take advantage of business owners or people without disabilities by using the ADA has been popularized in the news media—particularly with famous conservatives and libertarians like TV personality John Stossel and illusionists Penn and Teller. YouTuber Annie Segarra, who lives with Ehlers-Danlos syndrome (EDS), agrees that the ADA tends to put the onus on disabled people to report and follow up on violations and that it insufficiently enforces its mandates. “I’ll be confronted by spaces I’d like to enter, spaces I used to go before I was a wheelchair user, that are not accessible to me now,” says Segarra. “And in lieu of filing lawsuits, I’ll ask repeatedly, for years, for accessibility to be implemented, [only] for these requests to go completely ignored. The onus should not be on disabled people and their allies [to enforce the ADA], it should be enforced through inspection.”
Thirty years after its passage, the ADA’s promises are hampered by the same problems that have dogged all movements for civil rights: As Rooted in Rights blog editor-in-chief Emily Ladau notes, “[Y]ou can’t legislate attitudes.” In addressing disabled people as a group, the ADA reinforces the medical model of disability, which conceives of disability as something that is physically or mentally “wrong,” something that requires medical intervention—such as medication(s), surgery, or other medical procedures—in order to make the disabled person more “normal.” Journalist s.e. smith, who covers disability issues, identifies the problems with this blanketed approach. (In the interest of full disclosure, smith and I have worked together before, including on a 2011 print feature for Bitch.) “The ADA was fantastic, groundbreaking civil rights legislation that clearly established a framework for the personhood of disabled people,” smith says. “But it is also rooted in a very limited and medicalized view of disability, and it relies on individual enforcement—in essence treating violations as a personal rather than systemic problem.”
“For example, if you have diagnosed ADHD, you can get accommodations at work, but if you are self-diagnosed or can’t provide documentation [those accommodations] can be denied, and that’s not actionable,” smith continues. “Whereas if a workplace [builds] ADHD accommodations into the job, people don’t have to disclose or have proof to get what they need. A revamped ADA would have to rely heavily on disabled policy experts to create a framework that better reflects a shared future while creating room for innovation and creative interpretation—legislation is a really rigid way of setting and protecting civil rights, and we can’t just legislate disablism away.” One of the many issues that disabled people face, making it tough to imagine an accessible United States—much less imagine a shift of balance from a disability rights framework to a collective understanding of disability justice—is the attitude that disabilities are personal problems that can be overcome by a person’s will. This is a common but incorrect assumption that reflects America’s obsession with rugged individualism.
With a little bit of gumption and positive thinking, we’re told, disabled people can take personal responsibility for their disabilities and either overcome them (with medical help or simply a sunnier attitude) or overcompensate in order to compete with nondisabled people. Whether it’s former figure skater and testicular-cancer survivor Scott Hamilton’s Pollyannaish assertion that “the only disability in life is a bad attitude,” the seemingly endless array of disability-inspiration porn on social media, or news stories that focus on disabled athletes who manage superhuman feats, the old adage that all you have to do to overcome adversity is “pull yourself up by your bootstraps” is pervasive. The media’s focus on individual disabled people who manage to “make it” despite our capitalistic and ableist (not to mention kyriarchal) system can take attention away from collective actions and efforts to make widespread systemic changes for people with disabilities.
Sins Invalid Lateef McLeod and Lisa Thomas Adeyemo
Beneath an enormous, bright and shadowy full moon, before a large free-standing mirror with a wooden frame, Lateef McLeod, right, a Black man, lies back in the arms of Lisa Thomas Adeyemo, a Black woman. He wears black underwear, his pants around his knees, sitting on a sheep skin, his arm folded in front of him. She cradles him, her head resting on his shoulder. (Photo credit: Richard Downing/Sins Invalid)
Stephanie Farfan, who has dwarfism and joint pain from osteoarthritis, is a recent graduate of American University’s International Peace and Conflict Resolution Master of Fine Arts program; her graduate research project focused on Ecuador’s recent disability policies from the perspective of social movements. She says that even disability organizations can fall prey to ableist attitudes when it comes to maintaining aesthetic appeal: “[The] disability rights movement has a serious aesthetic[s] obsession. It centers disabled people that look a certain way at the expense of disabled activists that look [different]. [People] are obsessed with making disability look ‘normal’ or ‘presentable’ instead of looking at the beauty of disability as it is. This means that many disability organizations will put their ‘prettier’ or more ‘relatable’ disabled employees in promotional materials and give them opportunities for career growth, [while neglecting employees] who are visibly queer or have more visibly disabled characteristics.”
Workplace inequality continues to disproportionately affect disabled people despite the ADA’s anti-discrimination legislation; as of 2019, the U.S. Department of Labor reported that just 19 percent of people with disabilities are employed, compared to 66 percent of people without a disability. E Young, a Black nonbinary person who deals with mental health issues and chronic joint pain, has been open about their struggle to get reasonable accommodations at work: “I used to work in healthcare; the field that I work in now is more conservative, but I work at a more liberal, Europe-based company. Even here, the ‘reasonable accommodations’ and improvements are chalked up to something corny like ‘employee satisfaction.’ We’re so behind. The paperwork for something as simple as a different computer screen, or transcriptions, or a modified desk feels competitive. It’s there, but feels out of reach.”
Young’s status as a Black and disabled person makes them feel tokenized within their industry: “I don’t like disclosing my disability and feeling like a quota, although I do think it’s important to disclose. Same with my race and gender; I hate feeling like Black Hire #4.…For the people that complain that the ADA goes too far…it sometimes doesn’t go far enough, especially when it comes to actual job qualifications and requirements [that] openly exclude folks with disabilities.…Enforcing compliance seems so arbitrary. There’s even regional differences that add to the inconsistency. [If] you live in an at-will [employment] state, there’s not a lot of protection if you can’t prove you were fired or mistreated [because of your] disability. When the burden falls on the marginalized person, most of the time it’s easier to [walk] away pissed.”
The idea that disabilities are personal problems that can be overcome by a person’s will is an assumption that reflects America’s obsession with rugged individualism.
Teighlor McGee—student activist and creator of the Black Disability Collective Twitter account (@BlackDisability)— maintains that the United States needs to move away from capitalism to help solve workplace inequality: “An accessible world for disabled folks is one that challenges the idea that a person’s self-worth is related to the outcomes of their labor. Until we dismantle the idea that people must be members of the American workforce in order for them to deserve the right to live, we won’t be able to achieve an accessible world. The revolution begins [when we see] ourselves as worthy without feeling like we have to earn that worth through productivity.” The wider disability rights community is also in need of some systemic changes, particularly because the community has tended to center white disabled people—particularly white men.
McGee contends that disabled people of color, particularly Black and Indigenous people of color (BIPOC), tend to be left out of conversations within the community: “There’s no disability justice without racial justice. In order for our movement to progress and for us to fight for the collective liberation of all people, disabled people of color not only need to have a seat at the table, but [they also need the] opportunity to lead this work. This will only be achieved by intentionally centering [the voices of] Black and Indigenous [people]. White disabled folks need to strive to learn when to take a step back and listen. If you are a white disabled person, ask yourself: How will I intentionally invest in the voices of disabled people of color?”
s.e. smith echoes McGee’s concerns: “There’s a real failure to understand that while disability is a shared lived experience, other aspects of life can interact with it profoundly. The gunshot survivor in the Bronx fighting with Medicaid for a replacement wheelchair is not experiencing disability like the wealthy celebrity with multiple sclerosis. It’s not all ‘one of our people!’ when that experiential gap is so wide.” smith points out that the disability justice movement—started by a group of queer disabled people and disabled people of color including Patty Berne, the late Stacey Park Milbern, Leah Lakshmi Piepzna-Samarasinha, Mia Mingus, Eli Clare, Leroy Moore, and Sebastian Margaret— offers a more intersectional approach. However, white disability rights activists and those who are nondisabled should not expect POCs involved in disability justice to do the work for them.
Nomy Lamm, a fat white femme dressed as a baby bird hovers, one leg extended at a right angle from her body, over a nest made of twisted body parts and prosthetic limbs. Cara Page, a Black femme with short hair, bare shoulders, and a black body suit holds her hand, extending the other arm behind her body. They are framed against a background of tree branches and dappled leaves. (Photo credit: Richard Downing/Sins Invalid)
White disabled people, smith continues, should be willing to step back and make space for disabled POCs; they can do this by turning down certain opportunities—such as being a panelist at a disability conference—when that space could be given to a disabled person of color instead. Conversation around disability as an intersectional identity that intertwines with race, class, sexuality, and gender is ever-shifting, particularly in the age of social media. Vilissa Thompson—a licensed clinical social worker, founder of Ramp Your Voice, and the creator of the #DisabilityTooWhite hashtag—points out the importance of disabled people telling their stories, even if those stories push against prevailing ableist narratives and stereotypes: “[Disabled people need to] allow ourselves and our stories to be heard. More diverse disabled stories and storytellers need to exist and flourish, so that we can all be seen and included.”
Thompson approvingly cites social media’s influence in diversifying disabled narratives, saying “Many of us have used technology like social media, blogs, vlogs, and hashtags to create communities of people that look like us and share identities outside of disability. Technology has also afforded us the ability to call out whitewashing, racism, erasure, and exclusion in ways that past generations may not have [been able to].” There’s no question that the ADA has improved the lives of countless disabled people, but there is also no question that it doesn’t go far enough: As Emily Ladau quips, “The ADA needs teeth.” A truly accessible future is not going to look the same for all disabled people—like any minority community, we have different access needs that must be considered.
Sins Invalid Lateef McLeod
Lateef McLeod, a Black man in a dapper all-white suit stands, arms out, smiling, held up by another man who stands behind him, holding him under his armpits. There is a vibrant blue background, and a drummer sitting at the far back left side of the photo. (Photo credit: Richard Downing/Sins Invalid)
Annie Segarra was inspired to create the slogan “the future is accessible” after the 2017 Women’s March: “[There] was a lack of visibility for disabled activists as well as [an] inaccessib[ility at the] protests. Basing it off the popular ‘The Future is Female’ slogan from the ’70s, I changed female to accessible to mash them up and [create] a call to prioritize equity and accessibility, to remember [and integrate] the disabled people in our communities, [and] to uplift their narratives.” The continuing fight for accessibility—pre and post-ADA—has been at its strongest when people with different disabilities and access needs come together to reach common goals. America’s treatment of its disabled citizens is still deeply flawed: a lack of marriage equality, the lack of single-payer or public option healthcare, and the SSI/SSDI “poverty trap” are among the many issues that need solving.
It might seem like looking to the future wouldn’t provide practical solutions for the current issues facing the disability community, but by imagining what an accessible future might look like, those of us in the disability community move closer to practical ideas and solutions. (For example, I have spent many afternoons daydreaming about what it might be like to board public transit at a busy time and not have to awkwardly ask a nondisabled person who is sitting in the “priority seats” if I can have their seat.) Expanding the possibilities for everyday accommodations while continuing to address the persistence of ableism and bias calls for true community solidarity. The disability community—despite our differences—has excelled at banding together in times of struggle, and we will need to continue to do so as we fight for a fully accessible future.
Sins Invalid is a disability justice-based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and LGBTQ/gender-variant artists as communities who have been historically marginalized. Led by disabled people of color, Sins Invalid’s performance work explores the themes of sexuality, embodiment, and the disabled body, developing provocative work where paradigms of “normal” and “sexy” are challenged, offering instead a vision of beauty and sexuality inclusive of all bodies and communities.
