They were successful. As a result of their peaceful, but militant, protest, HEW Secretary Joseph Califano strengthened prohibitions on discrimination against people with disabilities in all programs that received federal funding, from health centers, to nursing homes, to colleges and universities. What’s more, their activism led, in 1990, to congressional passage of the Americans with Disabilities Act (ADA), which extended legal protections against discrimination to private-sector employment, transportation, public accommodations, and communications. It also gave people with disabilities access to all state and local government services and programs.
Disability rights advocate and writer Emily Ladau wants everyone to know this history. Her first book, Demystifying Disability: What to Know What to Say, and How to be an Ally, published in September by Ten Speed Press, not only trumpets these achievements but also offers a clear, concise, and pragmatic overview of disability issues, detailing steps that each of us, disabled or not, can take to ensure a more inclusive, respectful, and accessible world.
Ladau spoke to LARB about ableism, disability, and social justice.
ELEANOR J. BADER: Was there a particular event or situation that prompted you to write Demystifying Disability as an introduction to these issues?
EMILY LADAU: First, let me situate myself. I am one person, so I am only an expert on my own disability — Larsen syndrome. As a white, cisgender, heterosexual, Jewish, college-educated, verbal, and employed person, I know that I have a lot of privilege. I can’t speak to other people’s experiences, but I can educate people around broad topics surrounding disability and make people more comfortable having conversations about it.
As for the book, it was very much a matter of happenstance. I guest-hosted a podcast called Call Your Girlfriend, which was created by Aminatou Sow and Ann Friedman. They were passing the mic to people whose voices they wanted to amplify. The long-and-short of it is that, after the podcast, Laura Lee Mattingly from Present Perfect Literary Agency reached out to me. I’d never considered writing a book before, and at first it was a distant, in-the-future plan, but as she and I spoke, we realized that there was a gap in the market. An accessible book about what disability is and how people can be better allies to disabled people was needed.
How did you choose what to include?
I wanted to be holistic since disability reaches into every identity and cuts across race, class, gender, sexual identity, gender identity, and ethnicity and touches approximately 15 percent of the world population. I also wanted to provide enough background so that readers could understand how disability connects with other issues, including job access, schooling, health care, and family dynamics, as well as racism, sexism, ageism, ableism, homophobia, and transphobia.
The Americans with Disabilities Act (ADA) has been in place for 31 years, yet there is still pervasive discrimination against the disabled throughout the United States. How can the ADA be strengthened?
Sadly, you can legislate policy, but you can’t legislate attitudes. There is a widespread misunderstanding that the ADA is at the crux of all disability issues, that it’s the solution to discrimination and stigma against disabled people. Of course, the goal of the ADA is to prohibit discrimination, but you can’t change people’s minds by passing a law. You’d have to change mindsets to fully implement the ADA and that attitude shift has not happened yet.
In addition, there are not a lot of mechanisms in place to enforce the ADA. It’s not an office you call or a place you can go. Sure, people can sue based on ADA violations, but not everyone has the resources to do this. People also tend to discount the other laws — the Individuals with Disabilities Education Act, the Rehabilitation Act, The Fair Housing Act, and the Architectural Barriers Act, among them — that also address disability. We need to acknowledge the interplay between these laws and assess their impact on our daily lives.
But let me stress something else. While I’m critical of the ADA, it would be unfair to label it ineffective. It’s been a lifeline for me, giving me access to much of the world around me.
The book describes another ongoing policy that hurts people with disabilities: the subminimum wage. Is there much momentum to change this?
Individual states — Alaska, Colorado, Hawaii, Maine, Maryland, New Hampshire, Oregon, and Washington — have eliminated the subminimum wage, and the Biden administration has promised to put it on the agenda. A bill was recently introduced into Congress, the Transformation to Competitive Integrated Employment Act. If passed, it will require employers to pay disabled workers the minimum wage, rather than the pennies per hour they currently earn.
There is still so much stigma against disabled people. Kids aren’t taught about disability in school, and segregation continues. How can allies help move the needle on this?
There is an incredible amount of paradoxical thinking around disability. We are inspiring but pitiful; we’re God’s punishment, or God’s special angels. Part of it is that we, as a society, don’t talk about disability in the nuanced way it needs to be talked about. Instead, we have flawed extremes, with many recognizable tropes. Ads often paint disabled people as inspiring, as individuals who have overcome adversity. This is especially true around Paralympic competitions. But not every disabled person is an athlete. We all have different experiences, and society generally ignores the depth and range of humanity that people with disabilities represent.
What can allies do? Here’s a small thing. Microaggressions are common, so if you notice something, speak up. Let the person who used an offensive term know that that word or phrase is not okay. Unless we challenge small moments of ableism, we won’t change them.
The media seems particularly complicit here.
What we see shapes what we think, which shapes what we create. When stereotypes are perpetuated, it becomes an endless cycle. I write in the book about a study done by GLAAD in 2019–’20 that analyzed more than 800 TV series and broadcasts. Overall, just 3.1 percent — or 27 characters — were people with disabilities. For the most part, in the rare instances where a disabled person was included, it was a plot device, where the disability was part of their character rather than just an element of their everyday lives.
Another concern is that, when disabled people are included, they are often white people who meet arbitrary norms of what’s considered attractive. Progress clearly needs to be made to broaden the representation.
Schools tend to segregate kids with disabilities in “special education” classrooms. How can educational programs promote better inclusion?
Kids learn what they live and mimic what they see, and adults influence what kids understand by modeling attitudes and behaviors. A big part of the reason that kids see disability as scary is because adults treat it as scary and alien. We tell kids not to ask questions. I don’t mean to imply that kids should have carte blanche to ask whatever they want, but if we do not honor their curiosity, we cut off their interest in human diversity and limit their empathy and understanding. Disability needs to be woven into every aspect of schooling so that students learn about the interconnections between disabilities and everything else.
There continues to be a hierarchy of disability, and people with intellectual disabilities typically experience stronger stigma than people with physical disabilities. How can we challenge this?
People make judgments about whose lives have the most value based on ideas of what’s “normal.” For example, I use a wheelchair but can communicate verbally, so I know I’m perceived differently than a person who is nonverbal or who has a cognitive disability. Society values things like getting good grades and holding a job as paramount to a person’s worth, but just because someone does not do these things does not mean they are not thinking, feeling human beings. Changing our mindset requires us to reframe our understanding of who we think of as having worth.
You write about language in the book and how language impacts attitudes. You further urge us to be more mindful about using words like crazy, insane, nuts. Isn’t there a difference between using these words as slurs against an individual and using them to describe bad policies or harmful ideas?
We often use the word crazy and usually don’t mean it as a slur, but words have impact. Changing how we speak can be a small but powerful way to shift the mentality around disability so that words connected to mental health are not used as negatives. Something can be called bad, ineffective, mean-spirited, right?
Many people with invisible disabilities avoid the stigma associated with disability.
When someone has a non-apparent disability, people generally assume they are not disabled. This puts the onus on them to disclose, and since people with apparent disabilities are often subjected to discrimination, this can discourage them from revealing their status. It goes back to stigma. And its impact can be profound; people still lose custody of their children because they’re disabled. People still can’t always get an Uber or a taxi to pick them up if they use a wheelchair. Ableism impacts every aspect of our lives.
Last question. The issue of conservatorship has taken center stage thanks to Britney Spears. Does this help the larger disabled community?
We need to talk about conservatorship as a disability rights — a human rights — issue. But most of us in the disability community do not know Britney, so we need to be careful not to put our own narratives on her. Sure, I want to #FreeBritney, but I also want to free everyone else under conservatorship and make sure they have a say in how they get to live their lives. I want everyone to have options.
Eleanor J. Bader is an award-winning journalist based in Brooklyn, New York. In addition to LARB, she writes for Truthout.org, The Progressive, Lilith Magazine, Fiction Writers Review and other online and print publications.