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Demystifying Disability

What to Know, What to Say, and How to Be an Ally

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$16.00 US
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On sale Sep 07, 2021 | 176 Pages | 9781984858979
| Grades 6-12
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
 
ONE OF THE BEST BOOKS OF THE YEAR: NPR, Booklist • “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. What are the appropriate ways to think, talk, and ask about disability? Demystifying Disability is a friendly handbook on the important disability issues you need to know about, including:

• 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
© Rick Guidotti
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. View titles by Emily Ladau
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.
“If being a good ally to disabled people is your goal . . . Ladau’s guide is a goldmine.”—Book Riot

“Activist and writer Emily Ladau is a responsible guide and advocate for change, and her book is one that everyone could benefit from reading.”—BookPage

“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

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. 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.”—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.”—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.”—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. 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

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
 
ONE OF THE BEST BOOKS OF THE YEAR: NPR, Booklist • “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. What are the appropriate ways to think, talk, and ask about disability? Demystifying Disability is a friendly handbook on the important disability issues you need to know about, including:

• 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

Author

© Rick Guidotti
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. View titles by Emily Ladau

Excerpt

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.

Praise

“If being a good ally to disabled people is your goal . . . Ladau’s guide is a goldmine.”—Book Riot

“Activist and writer Emily Ladau is a responsible guide and advocate for change, and her book is one that everyone could benefit from reading.”—BookPage

“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

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. 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.”—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.”—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.”—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. 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

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