Demystifying Disability: What to Know, What to Say, and How to be an Ally (Emily Ladau)

Reviewed by Kate Champlin

Ladau’s book is a fantastic primer on disability etiquette, disability history, and current disability issues. The book is written for those completely outside the disability/ally community, but disabled readers and experienced allies can learn from it too. In addition to the history of disability activism, this primer covers appropriate language, intersectional identities, the need for access, and dangerous stereotypes in the media. In short, the book covers all of the subjects that I want my allies to know about. That alone makes the book a great resource both for the disability community and for those who want to learn more about that community. 

Beyond this, Demystifying Disability includes an absolutely fascinating chapter on disability history. As Ladau notes, disability history is generally not taught or was not taught until very recently. As a result, there is a wealth of knowledge about the histories of disabled people and the history of disability rights activism that is relatively unknown. In fact, many people assume either that the disabled community has no history or that our history is irrelevant. That assumption, in turn, becomes one more way that the majority culture keeps the disability community invisible. In this respect and others, Ladau’s book helps to counter a very destructive trend. 

Incidentally, West Virginia passed a law mandating disability history education in public schools in 2006, and a few states have followed West Virginia’s lead. However, these changes in education are very recent. I was also unaware of this particular disability history fact until I read Demystifying Disability.  That’s despite the fact that I did a dissertation on disability studies. It was nice to have someone chip away at my own culture-derived ignorance of disability history. 

I was also unaware of ADAPT’s specific history. ADAPT is an activist group that formed in the 1980s and insists upon disability rights through protest and civil disobedience. In 1990, ADAPT participated in the “Capitol Crawl.” In order to protest in favor of the Americans with Disabilities Act, protesters left their mobility aids behind and pulled themselves to the top of the Capitol steps any way they could. It was a powerful demonstration of the barriers disabled people face and a powerful, foundational moment in the disability rights movement. One participant, who was eight years old at the time, said, “I felt that we were crawling our way into the history books.”

That young participant, Jennifer Keelan-Chaffins, grew up and helped create her own history book about the protest. It’s a children’s book called All the Way to the Top: How One Girl’s Fight for Americans with Disabilities Changed Everything (written by Annette Bay Pimentel, illustrated by Nabi Ali, with a foreword by Keelan-Chaffins). All the Way to the Top will inform young readers about a vital event in disability history. I was glad to learn about that book as well. 

Ladau’s chapter on disability etiquette is fascinating. It answers seemingly impossible questions such as: what do you do when a child under your care asks an offensive question? Ladau’s answer: Don’t shush the child, don’t punish them, and definitely don’t model ableism for them by making jokes. (Responses like one that Ladau records, “You can’t ask things like that; these people will run you over,” are the opposite of helpful.) Ladau recommends answering honestly and pointing out that certain remarks can make people feel bad, but she also acknowledges that the appropriate response will vary from situation to situation. She adds that, while she doesn’t mind explaining her wheelchair to children, other disabled people may not be okay with such questions. 

Three other tips stood out as particularly useful to me. One was that it is always appropriate to ask about accessibility needs when you plan an event – even if you assume that you have those covered. A simple statement like the following opens the door for discussion and lets people know that they are “allowed” to discuss accessibility, “Hey do you/does anyone have any accessibility needs to participate? Let me know how I can support you.”

The next rule is the one that Ladau calls most important. There is no single correct way to communicate with disabled people. The disabled community is a diverse group, and standards like eye contact are not accessible to some disabled people. Ladau advises remaining open-minded but treating all disabled people with the respect owed to all human beings. 

The third rule is “never talk down to anyone.” This rule seems like a basis for interaction with any disabled person or, indeed, a member of any marginalized group. However, Ladau notes that the rule is especially important for disabled people, because disabled people without intellectual disabilities are often treated as if they have them, and people with intellectual disabilities are often treated like toddlers. The result is often stigma and humiliation for everyone in the disability community. Ladau describes how she remembers servers who expected her dining companions to order for her, and that uncalled for experience nearly ruined a night out. Another of Ladau’s tips is directly related to this one: always assume competence when you deal with someone who has an intellectual disability. 

On another note, I really love the cover on my copy of Demystifying Disability. It shows people with a wide variety of visible and invisible disabilities, all happy and in brightly colored clothes, interacting with each other. There’s one figure at the bottom of the page that clearly represents the author. Her curly brown hair, casual outfit, and wheelchair all link her to the picture of the author at the end of the book. While most of the people on the cover are speaking, racing, or dancing with each other – mini-Emily Ladau is waving hello to the audience. It’s a book cover that invites readers in. 

As a final note: At first, I thought Ladau was too quick to exonerate those who committed accidental ableism. At the beginning of the book, Ladau asks a series of questions about feeling flustered around disabled people or inspired by “supercrip” stereotypes and concludes, “If your response was “yes” to any of these, don’t stress. I’m not here to judge.” Sentences like that or, “…before you start getting textbook vibes and abandon me for a juicy beach read….” seemed almost to overdo Ladau’s attempts to make readers feel comfortable. After all, I thought, if people can’t be bothered to read one history chapter, maybe we don’t need them as allies. The same, I assumed, went for people who might give up the ally stance because someone judged them for being offensive on one occasion. Then I realized that I didn’t know all of the etiquette tips in the book myself. (It was the word “stupid” that got me. I’d never noticed that the word is offensive because I’d simply never associated it with disability – a seriously problematic oversight.) After that, I was relieved not to be judged.

I realized that the book strikes the right tone to encourage people to keep reading and to remind readers that ableisms are so deeply imbedded in our culture that sometimes we do not think about them.  Demystifying Disability also acknowledges how pervasive ableisms really are. Ladau points out that unlearning these language patterns and phrases is an important first step toward eradicating ableism. 

All in all, this is an informative book which acknowledges that ableism infuses culture. Some readers will find it useful while others will find it life-changing. Ladau’s Demystifying Disability provides a useful primer on the basics of disability culture, history, and advocacy. It fills in facts about history and advocacy that have been relatively unknown in the past. As noted, the book is a great resource for long-time members of the disability community and new allies/accomplices alike. 

Title: Demystifying Disability: What to Know, What to Say, and How to be an Ally
Author: Emily Ladau
Publisher: Ten Speed Press
Date: 2021

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About the Reviewer

Kate Champlin (she/her) is a late-deafened adult and a graduate of Ball State University (Indiana). She currently works as a writing tutor and as a contract worker for BK International Education Consultancy, a company whose aim is to normalize the success of underserved students.