ID: The words Book Report at the top beside an image of a book and the Learning to be Flexible logo. Beneath is the title, Demystifying Disability– Emily Ladau.
Demystifying Disability by Emily Ladau is a helpful primer on disability, accessibility, history, and ableism. This book is packed with lots of information while managing to stay concise. It will be a challenge to summarize because it’s so straightforward. Pick up a copy at your local bookstore, the library, or find audio and e-reader versions in the Libby app.
What is disability? Ladau offers many definitions from great disabled thinkers. In this book, writer and activist Cara Liebowitz defines disability as “A social identity, but it's also about having functional limitations." Jaipreet Virdi, assistant professor at the University of Delaware offers a definition from a different perspective "As a deaf person, I consider deafness a spectrum; the range of which defines an individual's identity and lived experience. Thus, deafness–and disability more broadly–is an oppression of difference rather than an impairment."
There are many models of disability. Models of disability are frameworks people use to understand disability. Ladau explains, “the social model emerged as a response to the incomplete perspective of the medical model. According to the social model, people are disabled not by medical conditions but by environments, attitudes, and systems that create barriers.” This handout from the United Nations Refugee Agency gives clear definitions of both the medical and social models.
“‘On her blog Leaving Evidence, Mia Mingus, writer, educator, and community
organizer for Disability Justice, explains that it is about ‘moving away from an equality-based model of sameness and we are just like you to a model of disability that embraces difference, confronts privilege, and challenges what is considered normal on every front.’” Disability Justice is a movement focused on examining ableism through an intersectional lens. It’s about understanding that experiences of ableism are different depending on other identities present.
D’arcee Neal a Black, gay, disabled PhD student shares their experience, “People need to recognize that being Black means you're perceived as being criminal, whether you have a disability or not. When I tell people I have cerebral palsy they're surprised because that's not the first association they made with why I'm a wheelchair user. When I was younger, the very first question most white people would ask upon meeting me was 'When were you shot?' They immediately jumped to the conclusion that I had a spinal cord injury as a result of gang or gun violence." No experience of ableism happens in a vacuum. Most disabled people exist with other identities. There is no singular experience of disability.
Learning about disability history is important to disabled and nondisabled people alike. Harriet Tubman, Frida Kahlo, President Franklin Delano Roosevelt were all disabled. Ladau explains, “The history of disability isn’t a separate, isolated thread of human existence. It is a saga that encompasses all people and places and is deeply intertwined with who we were, are, and will become.” The history of disability has also often intertwined with the eugenics movement. Eugenics, as defined by Francis Galton in the late 1800s, was "the study of all agencies under human control which can improve or impair the racial quality of future generations.” The eugenics movement in America led to the criminalization of interracial marriage, and supported immigration restriction, segregation, and forced sterilization of groups deemed lesser, including racial minorities and the disabled community.
As of 2022, forced sterilization of disabled people is still legal in 32 states and the District of Columbia. This next quote from Demystifying Disability refers to the Supreme Court Case Buck vs. Bell in which Carrie Buck, an 18 year old white woman, was sterilized after giving birth. “She was poor and uneducated, and she had given birth to a child out of wedlock, just like her mother, Emma. While Buck was in the institution, doctors cruelly determined that these three characteristics were reason enough for her to be forcibly sterilized so she wouldn’t be able to have any more children. The matter was escalated all the way to the U.S. Supreme Court, which ruled that forced sterilization was not a violation of the Constitution. In his haunting opinion on the case, Justice Oliver Wendell Holmes Jr. declared, ‘Three generations of imbeciles are enough.’” Ladau explains, “Many in the disability community use the slogan Nothing about us without us as a bold reminder of the fact that we’re the ones who must be in charge of every aspect of our lives. All too often, people with disabilities are relegated to the sidelines in conversations about issues that directly affect us—everything from individual circumstances to major policy decisions.”
Ladau defines ableism as ”attitudes, actions, and circumstances that devalue people because they are disabled or perceived as having a disability.” Ableism can look like many different things. It’s more than the President of the United States mocking a disabled journalist. It can show up in systems and institutions. This book contains many great examples. “In two-thirds of the United States there are statutes in place that allow courts to deem a parent unfit on the basis of their disability, which means their parental rights can be terminated.” “The median income for Americans with disabilities is less than 70 percent of the median earnings of those without a disability.” “During the COVID-19 pandemic, many states and countries issued guidelines explicitly calling for disabilities to be taken into account as a reason to not provide lifesaving health care to sick people.”
The book has a section on disability etiquette. It mostly boils down to the same etiquette you should have for everyone–try not to be a jerk. “Andrew Gurza, a disability awareness consultant, vividly recalls when one of his high school gym teachers approached him while he was in the middle of doing physical therapy and nonchalantly said, ‘Hey there, Andrew, what is your life expectancy?’ Talk about rude and insensitive. ‘I was fifteen at the time, and I was so extremely embarrassed,’ Gurza shares. ‘I had never had to consider my own mortality before. I was so angry, I left her classroom crying. All the other kids saw me leave. I was mortified.’”
This book also discusses disability representation in mainstream media. “According to GLAAD’s 2019–2020 ‘Where We Are on TV’ report, which looked at 879 series regulars on broadcast programming, only 3.1 percent—just twenty-seven characters—were people with disabilities. This is nowhere close to being representative of the 15 percent of the world’s population who are disabled.” She goes on to explain the ramifications of this. “When we’re constantly surrounded by ableist depictions of disability, it’s all too easy for both nondisabled and disabled people to believe it as truth. A single scene in a movie, page in a book, or article online can manipulate where the line falls between our understanding of what’s inaccurate and what’s reality, feeding into a harmful cycle of discrimination.”
As disability activist Stella Young said, “No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never. Smiling at a television screen isn’t going to make closed captions appear for people who are deaf. No amount of standing in the middle of a bookshop and radiating a positive attitude is going to turn all those books into Braille. It’s just not going to happen.” Ladau explains, “And yet, many people are convinced that disability is an internal barrier that can be overcome if one only tries hard enough. There’s a lack of recognition that the adversity disabled people experience has nothing to do with needing to try harder or adjusting our attitudes to be more positive. Rather, it stems from the belief that disability is some kind of personal failing.”
And yet Ladau urges us, “If the disability community wants a world that’s accessible to us, then we must make ideas and experiences of disability accessible to the world.” Read this book. Learn about disability, history, and disability justice. Be introduced to a wealth of other disabled activists and thinkers. You’ll be glad you did.
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