Demystifying Disability: What to Know, What to Say, and How to Be an Ally

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An approachable guide to being a thoughtful, informed ally to disabled people, with actionable steps for what to say and do (and what not to do) and how you can help make the world a more inclusive place

"A candid, accessible cheat sheet for anyone who wants to thoughtfully join the conversation . . . Emily makes the intimidating approachable and the complicated clear."--Rebekah Taussig, author of Sitting Pretty: The View from My Ordinary, Resilient, Disabled Body

People with disabilities are the world's largest minority, an estimated 15 percent of the global population. But many of us--disabled and nondisabled alike--don't know how to act, what to say, or how to be an ally to the disability community. Demystifying Disability is a friendly handbook on the important disability issues you need to know about, including:

- How to appropriately think, talk, and ask about disability
- Recognizing and avoiding ableism (discrimination toward disabled people)
- Practicing good disability etiquette
- Ensuring accessibility becomes your standard practice, from everyday communication to planning special events
- Appreciating disability history and identity
- Identifying and speaking up about disability stereotypes in media

Authored by celebrated disability rights advocate, speaker, and writer Emily Ladau, this practical, intersectional guide offers all readers a welcoming place to understand disability as part of the human experience.

Praise for Demystifying Disability

"Whether you have a disability, or you are non-disabled, Demystifying Disability is a MUST READ. Emily Ladau is a wise spirit who thinks deeply and writes exquisitely."--Judy Heumann, international disability rights advocate and author of Being Heumann

"Emily Ladau has done her homework, and Demystifying Disability is her candid, accessible cheat sheet for anyone who wants to thoughtfully join the conversation. A teacher who makes you forget you're learning, Emily makes the intimidating approachable and the complicated clear. This book is a generous and needed gift."--Rebekah Taussig, author of Sitting Pretty: The View from My Ordinary Resilient Disabled Body

Review

"Emily Ladau provides a welcoming, easy-to-read guide to disability. I highly recommend this book to readers seeking to deepen their understanding of disability and ableism."--Haben Girma, human rights lawyer, speaker, and author of Haben: The Deafblind Woman Who Conquered Harvard Law

"Emily Ladau has written an immensely clarifying book that disabled and non-disabled people alike will find incredibly useful. Demystifying Disability is both comprehensive in its scope and easy to understand. I can't recommend this book enough."--Eric Garcia, author of We're Not Broken: Changing the Autism Conversation

"Demystifying Disability is a generous and approachable companion to the world of disability--especially for people who are (for the time being, at least) not disabled. This book is an expansive, welcoming, and generous guide to disability history, culture, activism, and etiquette. I'll be using it as a reference book for years to come."--Ann Friedman, co-author of Big Friendship

"Emily Ladau has crafted an absolutely essential guide to understanding disability. In it, she dispels countless myths that surround the disabled experience, while providing practical tips for interacting with disabled people in healthier and more positive ways. I'll be sharing with everyone I know!"--Shane Burcaw, author of Laughing at My Nightmare

"Demystifying Disability is a powerful reminder that disability is a vast spectrum with a wide range of voices and experiences. Emily Ladau expertly addresses so many of the common issues and pitfalls (and how to learn from them) able-bodied people face when attempting to be supportive of the disability community. I am grateful for this book and Emily's voice."--Grace Bonney, author of In the Company of Women

"From general disability knowledge, to disability rights, to ableism, to what to say and what not to say, this book will provide everyone with more understanding and empathy (not pity!) about what it really means to be disabled and what non-disabled people can do to be better allies, friends, parents, and partners with the disability community. This is the disability primer we've all been waiting for!"--Amy Webb, author of the award-winning Charley and Emma picture book series

"Demystifying Disability is a great primer for anyone who wants to learn more about the largest minority in the world, and how to lead with accessibility at the forefront."--Victor Calise, commissioner of the New York City Mayor's Office for People with Disabilities

"Demystifying Disability is a game-changer in so many ways. This book is long overdue and is a must read for both new and experienced allies. Emily's writing has helped to reshape my advocacy and will do the same for many others."--Chris Ulmer, founder of Special Books by Special Kids

"Emily Ladau is a once in a generation kind of writer and activist whose legacy can't even be quantified. When Emily enters a room, she changes it forever. The world needs her. The world needs this book."--Liz Plank, award-winning journalist and author of For the Love of Men

"This wonderfully accessible and intimate volume delivers a comprehensive review of the complicated topic of the disability experience. Everybody should read this book." --Emily Perl Kingsley, writer for Sesame Street

About the Author

Emily Ladau is an internationally known disability rights activist, writer, and speaker. She is the editor in chief of the Rooted in Rights blog, a platform dedicated to amplifying authentic narratives of the intersectional disability experience. She also co-hosts The Accessible Stall, a podcast about disability issues. Ladau's writing has been published in outlets including the New York Times, HuffPost, CNN, Self, Salon, Vice, The Daily Beast, Variety, and Marie Claire Australia. Her work is also included in the Criptiques Anthology and About Us: Essays from the Disability Series of the New York Times. She has served as an expert source on disability issues for outlets including NPR, Vox, Washington Post, and Teen Vogue, and has been featured in a range of press outlets including Newsday, BuzzFeed, CBS News, and U.S. News & World Report.

Excerpt. © Reprinted by permission. All rights reserved.

Introduction:

Why Do We Need to Demystify Disability?

One billion. More than one billion people around the world are disabled. In fact, we’re the world’s largest minority. Statistically speaking, there’s a good chance this book is relevant to you. To narrow things down a little more, let’s do a quick gut check.

Have you ever tried to talk about disability and found yourself flustered over what words to use?

Have you ever shushed your kid for asking “what’s wrong” with a person who was using wheelchair?

Have you ever shared a news story about a disabled person on social media because you felt warm and fuzzy after reading it?

Have you ever compared yourself to someone with a disability to make yourself feel better about your own life?

If your response was “yes” to any of these, don’t stress. I’m not here to judge. Consider this book a safe space to learn and find answers to certain questions you might have but aren’t sure how to ask.

It’s pretty common for the mere mention of the word disability to evoke fear, confusion, and an endless stream of misconceptions. And often, people don’t realize their own biases. There’s much work yet to be done to change hearts and minds—or, at the very least, to get nondisabled people to stop treating disabled people as a weird cross between precious gems and alien creatures. And I am one of the many disabled people who are passionate about doing such work.

So, a little about me: I have multiple disabilities, including a physical disability, a hearing disability, and mental health disabilities. I use a wheelchair because I was born with Larsen syndrome (LS), a joint and muscle disorder that I inherited from my mom, Ellen, who also has it. You might think that our both having LS is a tragedy, but we don’t. In my humble opinion, it’s pretty fantastic to have someone built into my life who just gets me. But I know my mom didn’t always feel this way. When she and my dad, Marc, were considering having a baby, they sought out genetic counseling and were reassured that my mom wouldn’t pass on LS. Midway through the pregnancy, though, an ultrasound showed otherwise. My mom was absolutely overcome with guilt, fearing the worst for me and worrying that I’d resent her. And even though that couldn’t be further from the truth, I don’t blame her for these concerns. Society was even less disability-friendly while my mom was growing up than it is now. And once, when I was a baby, a woman was staring at us because she noticed our disabilities, and my mom overheard her say, “Look at what that mom did to her baby.” That rude comment left a sting that’s never gone away.

Even so, in the years since my birth, there’s been a continued shift toward greater acceptance and understanding of disability.

But all of us—nondisabled and disabled people alike—have more to learn about how to make the world a better, more accessible, more inclusive place. So how do we do this? There’s a philosophy I’ve come to embrace that informs everything I do:

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.

How can we expect understanding and acceptance of disability if we aren’t willing to share our insights and our stories? I recognize this isn’t always a popular line of thought among many disabled people. Educating others about the nuances of your daily life is a heck of a lot of work, and it can take an emotional toll—especially when there’s pushback, or the people who need to learn just won’t listen. It makes sense not to want to live our lives moving from one teachable moment to the next. We’d prefer to just live our lives, period.

However, the reality is that we’re not quite there yet. Whether I’m out and about in the world at large or just aimlessly scrolling through social media, I’m on high alert for ableism, stereotypes, stigma, and discrimination toward disabled people—and there is a lot of it to be found. So, for now, I believe that offering honest and sincere guidance and conversation remains a key part of the path forward for the disability community. That’s how progress has been made by the powerhouse disability activists who have come before me. It’s how we will continue forward. And if one person who reads this book thinks better of using disability as a slur or insult, or calls their representatives to advocate for a disability issue, or adds a ramp to the entrance of their shop, then we’re moving in the right direction.

There’s No Test at the End

This book is a 101 on certain aspects of disability for anyone seeking to deepen their understanding and be a stronger ally, regardless of whether they identify as disabled. Use it as a reference, a resource, a jumping-off point, or a conversation starter. But remember, this isn’t a textbook or an exhaustive encyclopedia of disability. I’m not an academic, and I won’t be subjecting you to a pop quiz on what you’ve read. Instead, I hope that you’ll take what you learn from this book and apply it to real-world conversations and situations. And if you don’t get your language quite right on the first try, or you still have questions about whether a movie you saw recently represents disability in a positive light, that’s okay! I promise this isn’t a class that you’re going to fail.

The most important thing is that you aren’t just reading this book to try to get a gold star for doing the right thing or being nice to disabled people. Including, accepting, and supporting people with disabilities doesn’t make anyone a saint. That being said, learning about and understanding experiences outside of your own is a process, so don’t be too hard on yourself.

Disability Is Not One-Size-Fits-All

At certain points, I’ll refer to the “disability community” as a collective term for disabled people. While we are indeed a diverse and beautiful community, it’s important to know that I’m not using this term to erase or gloss over our individual experiences. There is no singular disability experience, and this book is in no way intended to be representative of every single person with a disability. We’re each our own person, and everyone’s thoughts and experiences are different. Because disability exists in infinite forms, even people who share the same diagnosis (if they have one) don’t have identical experiences.

My family is a perfect example of this. In addition to my having the same genetic disability as my mom, my Uncle Jonathan has it too. In some ways, our bodies are really similar. We’re all shorter than five feet, our thumbs are rounded like spatulas, our elbows are permanently bent, and we all have hearing loss. But we’re also each affected differently. My mom and I were both born with a cleft palate (an opening in the roof of the mouth), but my uncle wasn’t. Both my uncle and my mom can walk, but I can’t. Even with our shared DNA and shared disability, our experiences are unique.

So it’s important to remember that if you’ve met one disabled person, you’ve met one disabled person. And if you have a disability, then the only disability experience you’re an expert on is your own. The same logic is true in regard to this book. This is just one book on disability, and while my goal is to shine a spotlight on a wide-ranging spectrum of topics, perspectives, and experiences, please remember that I perceive the world through the lens of a person with an apparent physical disability. There’s a whole world of words and wisdom about disability out there. Wherever you are in your journey, whether this is the first thing about disability you’ve ever read or the hundredth, I encourage you to keep reading, keep learning, and keep going.

Review:

5.0 out of 5

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5.0 out of 5 stars Highly recommended for nondisabled AND disabled readers

H.@.J.G.B. · 29 September 2021

It’s taken me a while to get my thoughts in order for this review, not because there were any problems with Demystifying Disability because it is absolutely brilliant. I find these reviews the hardest because if I don’t take the time to put my thoughts in order all you will get my dear readers is a lot of nonsensical squeeing and an overuse of capital letters.Starting at the beginning, the book covers a vast range of material and does so in a format that makes sense and eases the reader into the subject slowly and painlessly. There’s a huge emphasis on learning and being able to make mistakes as long as you are willing to keep learning. It would be nice if there wasn’t such a huge learning curve, but as a white woman I’m aware of my own learning curve when it comes to racism, so I am in no position to fault nondisabled people for having when it comes to ableism. Plus, I would hope that most people who are actually reading Demystifying Disability are already open to the possibility of changing their own perceptions of disabled people and the disabled community. It can be extremely frustrating as a disabled person to keep dealing with ignorance, but I think Ladau puts it best when she says in the introduction “If the disabled community wants a world that’s accessible to us, then we must make ideas and experiences of disability accessible to the world” and that is exactly what Demystifying Disability does.Ladau starts with basics; “So, what is Disability, anyway?” is the name of the second chapter and it covers everything from the dictionary definition, to what disability means to disabled people and how to talk about disability. This part includes the difference between Person-first language (PFL) and Identity-first language (IFL), and why people in the disabled community choose to use either one. I extremely appreciated Ladua admitting that when she realised her own personal preference, (IFL) she also recognised that she didn’t like being told what to call herself and with that “came an understanding that I couldn’t tell other people what to call themselves”. I was silently applauded Ladau at this stage because this is one of my biggest issues with many people in the disability community; they criticise others for what they do, especially the language they choose to use, but hate being told what they should do themselves. The level of hypocrisy is horrible, and for someone to put it in print in a book about disability is absolutely fantastic.She continued on this topic by included the controversial term “differently able”, including a quote from a fellow disabled advocate who explained why she prefers to use it. I personally have no issue with the term, but many people do, and they can get quite nasty about it. Instead of choosing to listen to the reasons why people may use it they brand it as “ableist”, and I’ve even seen the word “traitor” get thrown around before. Again, I appreciate that Ladau made a point of including it and pointing out that the real issue is not what disabled people choose to call themselves, it’s when nondisabled people make up ways to “dance around disability” as she puts it. Those are far more harmful, and I hope that certain people within the disabled community understand Ladau’s message here because it’s for them just as much as nondisabled readers.I could fill this entire review with points about each chapter (I highlighted so many excellent points of this book) but that would defeat the point of you all reading it for yourself. Every single chapter is filled with information, anecdotal evidence from Ladau’s life, carefully collected source material, or guests she has interviewed. Some of their accounts are chilling even to me, a member of the disabled community. Her section on intersectionality in particular gets right to the point and does not waste time in ensuring that the reader understands how serious the reality of prejudice and stigma towards disabled people of multiple marginalised identities is. One interview remained with me long after reading Demystifying Disability. D’Arcee Neal a doctoral student shared his experiences as a Black young man with cerebral palsy who uses a wheelchair. In an interview, he told Ladau: “When I was younger, the very first question most white people would ask upon meeting me was ‘When were you who?’ They immeadiatly jumped to the conclusion that I had a spinal cord injury as a result of gang or gun violence.”Neal’s experience is just one of many that Ladau shares in Demystifying Disability. Some are familiar to me, and some are so shocking that I had to put the book down briefly. At times this will be a hard book to read, but remember that these are events that people lived through. Disability is something that I, and many others, live with every day. The least you and I owe the people that shared their experiences to help spread awareness about what disabled people have to deal with is read them.One of the chapters that I was most interested to read was the one on disability history, and it was very informative; if you’re American. I still learned a lot from it, however, it only covers the American side of history and as a Brit that means it’s filled with a lot of names and events that mean nothing to me. I think an American reader will get a lot more out of this than I did. While I appreciate that it would have been difficult to include an entire worldwide history in one chapter, it would have been nice if there had even just been a few highlights.As I’m reviewing this for GeekDis I need to mention the brilliant chapter on “Disability in the Media”, which was once again based on American media, but this is to be expected with an American author. Media consumption is a personal preference, after all. Ladau introduces the reader to the discrepancies in disability representation, highlighting the connection between inaccurate representation and discrimination, and how it affects how disabled people perceive themselves. She then focuses on a huge issue; inspiration p0rn. After explaining what it is, Ladau divides it into three types; Overcoming Adversity, Life’s Moments, Great Expectations and Not Your Good Deed. She then challenges the reader to not share inspiration p0rn the next time they come across it, or if they do, share it to call it out. I’m making a point to highlight this segment of the book because in the age of social media, inspiration p0rn is an ever-growing thing and this part of Demystifying Disability is just as important as everything else Ladau writes about.Ladau continues the chapter by doing some calling out of her own as she goes through some of the most common tropes in media. In a section about the “tragedy” of physical disability she calls out the popular film Me Before You, under stigmatizing mental illness she draws attention to how often pop culture encourages us to gawk at people in crisis, and in freaks and other “abnormalities” she highlights how modern medical dramas like Grey’s Anatatomy dramatise stories of people with complex diagnoses for ratings. It’s not all bad news though; there’s a wonderfully uplifting section as Ladau celebrates positive portrayals of disability representation and tells people what to look for (if you’ve been keeping up with GeekDis you’ll know what I’m about to say…); authenticity. As Ladau says, “people with disabilities know ourselves and our experiences best, and we use them to breathe life into stories both real and imagined”. She continues to explain that disabled creators have always been there, but nondisabled gatekeepers have decided what stories should be told, and slowly things are changing as “the mainstream is letting us in”.There is a lot of information in Demystifying Disability, and one of the great things that Ladau has done to help make it easy to digest is a quick recap at the end of each chapter in bullet points. This is a book that you’ll want to keep a copy of at hand to back to and re-read when and as you need it. That is what it’s designed for, and there is a fabulous index at the back of the book that makes it even easier for the reader to find what they are looking for again. No one is expecting nondisabled readers to memorise this book, or get it right every time, the point is that we want you to try. That’s why Ladau has created Demystifying Disability and for my fellow disabled readers this is a perfect book to give to people who might not quite understand what you’re going through. Whether it’s a relative, a friend or a colleague, Demystifying Disability is a great book for them to read and then come to you. It takes the weight of expectation off of us as disabled people to answer every single question, and I think that is probably by design by Ladau too.As I said in my review, this is a book that I have already started recommending to people and I probably will be for quite a while!

Excellent, easy to understand and relatable

M.i.W. · 10 October 2024

Emily Ladau does an outstanding job of informing readers about how to be an ally to disabled people. As a sibling of a person with disabilities, I thought I was speaking and acting in an acceptable manner but boy, did I learn a thing or two about what I was doing wrong. I also learned a lot about leaders in the disability rights movement and gained tremendous respect for their work. I remember the not so distant past of people being put in institutions, and while we have come a long way, this book reminds us in a practical fashion that there's still so much work ahead to be done. I applaud Ms. Ladua's writing and highly recommend this book.

Educational and refreshing

E.m. · 8 November 2021

If you are looking for an easy read into the dynamics of language surrounding disability in the 21st century, look no further! As I read some of the negative comments, they clearly did not understand the intention of the book.Emily clearly states she is not an academic, and so does not delve into the deep-rooted history of disability advocacy and I see nothing wrong with that. This is a lighter read, meant to brief non-disabled folk on the subject of progressive language that can, and should be used in the 21st century. It is in plain language, to make it easy for a wide range of readers.Emily is highly informed, and non-judgmental. While society does need to update regarding accommodations and becoming person-centred, advocacy is strongest when our stories our told. Living loudly allows the light to seep through the cracks and gaps in society. Thank you Emily for this awesome book!

No idea how to talk about Disability in your EFL-Classroom?

F. · 31 March 2023

I based my Master Thesis on this book. So if you want your students to stop your students seeing disabled people as less abled people. READ this book! I stopped explaining my disability to any of my students, I just started quoting this book in my classes and it changed their perception.

Good book

S.A. · 23 November 2021

- Good information about disability- Good quality of book- Worth the money

Love love love this book!!

A. · 2 August 2024

This is such a great book! Gets the important information to you directly and shares perspective from someone with lived-experience, which to me makes it so much more authentic!As someone with a visible disability, I find that people don't know the right/wrong things to say and are fearful, but this book guides readers so well on diverse language!

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Demystifying Disability: What to Know, What to Say, and How to Be an Ally

Name: Demystifying Disability: What to Know, What to Say, and How to Be an Ally
Brand: Ten Speed Press
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