by Rosemary Brown
Demystifying Disability: What to Know, What to Say, and How to Be an Ally was the last book read and discussed in the Settlers Book Club. One of our members, who is autistic and has years of disability studies, work, and activism, says it is a good start, a “disability 101”. She also points out that people with disabilities are the largest minority in the world—and it is one that any of us can join at any time.
Demystifying Disability was written by Emily Ladau, an American disability activist; the book is short and packed with information from which we all have a lot to learn.
Ladau begins with a discussion of what disability means. It made me realize that I have always had a restricted definition of disability. After presenting how different activists view disability, Ladakhis comes up with a much more holistic definition. She says that “it isn’t just a static term, with a single meaning. It is a big, broad term to describe a natural, constantly evolving part of the human experience.”
I had always been taught that one should always refer to people with disabilities as people first, but Ladau points out that there is a difference of opinion on this issue among disability activists, some of whom prefer to foreground their identity as a disabled person. Ladau suggests that the best thing to do is ask what people prefer and emphasizes that there is no single disability community, and she does not speak for everyone. She also points out that “what unites us is the fight for access, inclusion, and justice.”
She writes a whole section on terms to avoid when speaking about someone with a disability and offers alternatives, challenging our notions of what is “normal” in the process. As our group member said, “normal is a setting on a washing machine, not a person”.
Ladau then goes on to discuss the different models that have been used to approach disability: charitable, cultural, medical, economic, human rights, etc. She says that none of these models are sufficient to encapsulate all that disability is and that some are downright harmful.
The chapter outlining a history of disability activism and the many gains that have been won over the decades was interesting and powerful. It’s a significant and inspiring part of our history that is missing from courses and textbooks. The only drawback is that the book is focused on the United States; we need a similar history for Canada.
Ladau follows with an extensive discussion of ableism, offering many examples of how it operates on individual and systemic levels. She asserts that the usual definition of ableism as “discrimination and prejudice against people with disabilities” is not sufficient and offers another: “attitudes, actions, and circumstances that devalue people with disabilities”.
Often, we are unconscious of the myriad of ways in which ableism operates in our society, this chapter offers examples ranging from remarks to or about people with disabilities to the lack of accessibility in public spaces and on websites. Ladau makes clear that it is not necessarily the disability which limits full participation in society, but rather the barriers placed in peoples’ way.
She also points out that ableism does not exist in a vacuum, but often intersects with other forms of oppression, such as that based on race and gender. As a book club member stated, disability cuts across all other identities, and it is important to take this into a account when addressing ableism.
A chapter on “Disability Etiquette”, discusses dos and don’ts when interacting with people with disabilities. Another chapter focuses on disability in the media, which caused me to rethink my reactions to stories of people with disability portrayed in film and will prompt me to bring a more critical eye to news coverage of people with disabilities.
Ladau concludes with an insightful discussion of what it means to be an ally of people with disabilities. This includes self-reflection upon our motives and a need to discard any notions of “helping” or saviourism. Instead, it is “working side by side with people who are marginalized, to confront the system and contribute to shifting it.” Ladau offers many concrete examples of this “working side by side”, which should be adopted by any movement for progressive social change.
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