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Demystifying Disability: What to Know, What to Say, and How to Be an Ally
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 accessible, inclusive place.
Disabled people are the world’s largest minority, an estimated 15 percent of the global population. But many of us–disabled and non-disabled 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 important disability issues you need to know about, including:
� How to appreciate disability history and identity
� How to recognize and avoid ableism (discrimination toward disabled people)
� How to be mindful of good disability etiquette
� How to appropriately think, talk, and ask about disability
� How to ensure accessibility becomes your standard practice, from everyday communication to planning special events
� How to identify and speak 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.
Disabled people are the world’s largest minority, an estimated 15 percent of the global population. But many of us–disabled and non-disabled 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 important disability issues you need to know about, including:
� How to appreciate disability history and identity
� How to recognize and avoid ableism (discrimination toward disabled people)
� How to be mindful of good disability etiquette
� How to appropriately think, talk, and ask about disability
� How to ensure accessibility becomes your standard practice, from everyday communication to planning special events
� How to identify and speak 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.
176 pages, Paperback
First published September 7, 2021
424 people are currently reading
10.4k people want to read
About the author
Emily Ladau
1book146followersEmily Ladau is an internationally known disability rights activist, speaker, and author of Demystifying Disability: What to Know, What to Say, and How to be an Ally. 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.
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March 30, 2021
Emily Ladau is a widely known disability rights advocate, speaker, and writer whose book "Demystifying Disability" is, and I have to say it, an accessible guide to being a thoughtful and informed guide to people with disabilities.
Oh, and she apparently has sex.
I knew as soon as I saw a quote from good friend Lawrence Carter-Long in the book that I was going to be in good hands with Ladau's intelligent and insightful work here. For those of us living with disabilities, "Demystifying Disabilities" isn't particularly demystifying. After all, we live it. Though, as Ladau points out on multiple occasions in the book, we all live it differently and part of the beauty of "Demystifying Disability" is that Ladau leaves room at the table for nearly everyone.
Disabled people are the world's largest minority - an estimated 15% of the world's population. Yet, to this day, it seems as disability remains a mystery to many and "Demystifying Disability" gently yet intentionally breaks down the walls of mystery and builds a bridge to understanding and human connection.
Ladau's writing style is warm and friendly, however, Ladau doesn't hold back on the importance of these insights she's so eloquently sharing. Ladau explores such issues as exploring disability history and identity, ableism, positive disability etiquette, appropriately communicating about disability, planning for accessibility in daily life, and confronting media stereotypes about disability.
There's more, of course, but one of the wise things here is that Ladau actually keeps the conversation surprisingly simple and weaves in her own experiences into the wider conversations being discussed here. Ladau discusses the importance of understanding intersectionality, a term we've all likely heard these days but often don't truly understand.
"Demystifying Disability" is a tremendous place to start the disability conversation. There are a myriad of quality discussions that can be formed out of the book and Ladau writes from a peaceful, hospitable place that seems to invite genuine conversations. It is, of course, possible to go much deeper than Ladau chooses to go here. While I myself didn't particularly find "Demystifying Disability" groundbreaking information, I've had a disability my entire life and I can assure you that many will read these pages and go "I never thought of it that way."
Indeed, many of us deal with it every single day.
Beautifully written and easy to understand, "Demystifying Disability" takes away the mystery and the "inspiration" and the stereotypes and infuses disability with real life, rich humanity, and common ground.
Oh, and she apparently has sex.
I knew as soon as I saw a quote from good friend Lawrence Carter-Long in the book that I was going to be in good hands with Ladau's intelligent and insightful work here. For those of us living with disabilities, "Demystifying Disabilities" isn't particularly demystifying. After all, we live it. Though, as Ladau points out on multiple occasions in the book, we all live it differently and part of the beauty of "Demystifying Disability" is that Ladau leaves room at the table for nearly everyone.
Disabled people are the world's largest minority - an estimated 15% of the world's population. Yet, to this day, it seems as disability remains a mystery to many and "Demystifying Disability" gently yet intentionally breaks down the walls of mystery and builds a bridge to understanding and human connection.
Ladau's writing style is warm and friendly, however, Ladau doesn't hold back on the importance of these insights she's so eloquently sharing. Ladau explores such issues as exploring disability history and identity, ableism, positive disability etiquette, appropriately communicating about disability, planning for accessibility in daily life, and confronting media stereotypes about disability.
There's more, of course, but one of the wise things here is that Ladau actually keeps the conversation surprisingly simple and weaves in her own experiences into the wider conversations being discussed here. Ladau discusses the importance of understanding intersectionality, a term we've all likely heard these days but often don't truly understand.
"Demystifying Disability" is a tremendous place to start the disability conversation. There are a myriad of quality discussions that can be formed out of the book and Ladau writes from a peaceful, hospitable place that seems to invite genuine conversations. It is, of course, possible to go much deeper than Ladau chooses to go here. While I myself didn't particularly find "Demystifying Disability" groundbreaking information, I've had a disability my entire life and I can assure you that many will read these pages and go "I never thought of it that way."
Indeed, many of us deal with it every single day.
Beautifully written and easy to understand, "Demystifying Disability" takes away the mystery and the "inspiration" and the stereotypes and infuses disability with real life, rich humanity, and common ground.
September 24, 2022
Hi everyone! GeekDis is happening again this year, and I'm giving away a copy of Demystifying Disability as a part of the event!
It's open internationally, and
I've reviewed this book as a part of an event I am hosting in September 2021 called GeekDis. GeekDis is a collaborative event for members of the disability community to talk about disability representation in pop culture. You can learn more about !
Originally posted on .
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!
For more of my reviews please visit !
March 14, 2022
clear, accessible, and compassionate, emily ladau's book is exactly the sort of resource i've been seeking to read and share with folks around me!
October 4, 2021
I’ve been thinking a lot about this book since I finished it, and I felt like I would be doing a misdeed to not leave it a review.
From the very first chapter, I found it to be steeped in ableism. “I believe 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� already set the tone that disabled people should tell their stories in order to get our basic human rights met. No disabled person should be forced to be a “teacher� to others. We don’t have to offer guidance or have conversations with nondisabled folks in order to be respected and to qualify to have our needs met.
This book goes on to sugarcoat disability in some of the goofiest ways I’ve ever read, going so far as to compare different disability presentations to different slices of pizza. If this book was written for children, that may be acceptable. But for a “wide range of audiences�, as the author has suggested, it is infantalizing. And is that not something that disabled people fight against? We don’t want nondisabled people infantalizing us, but this book turns around and infantalizes its audience.
In the Disability History chapter, the author says “my goal isn’t to put you to sleep�, as if our history as disabled folks is a snooze. Our history is part of our culture & part of disability justice. You can’t separate the disability movement from its history. But this chapter felt like it was raced through with urgency, as if it was a highlight reel. How can we seek disability justice if others don’t know what came before? You can’t just lightly touch on something that has shaped our past, present, and future.
I could say so many more things- my critiques for this book are limitless. If you want to learn more about disability, our beautiful culture, our rich history, our real and valid struggles with ableism, etc., this book isn’t the right one. Instead, I would recommend Care Work or Disability Visibility.
From the very first chapter, I found it to be steeped in ableism. “I believe 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� already set the tone that disabled people should tell their stories in order to get our basic human rights met. No disabled person should be forced to be a “teacher� to others. We don’t have to offer guidance or have conversations with nondisabled folks in order to be respected and to qualify to have our needs met.
This book goes on to sugarcoat disability in some of the goofiest ways I’ve ever read, going so far as to compare different disability presentations to different slices of pizza. If this book was written for children, that may be acceptable. But for a “wide range of audiences�, as the author has suggested, it is infantalizing. And is that not something that disabled people fight against? We don’t want nondisabled people infantalizing us, but this book turns around and infantalizes its audience.
In the Disability History chapter, the author says “my goal isn’t to put you to sleep�, as if our history as disabled folks is a snooze. Our history is part of our culture & part of disability justice. You can’t separate the disability movement from its history. But this chapter felt like it was raced through with urgency, as if it was a highlight reel. How can we seek disability justice if others don’t know what came before? You can’t just lightly touch on something that has shaped our past, present, and future.
I could say so many more things- my critiques for this book are limitless. If you want to learn more about disability, our beautiful culture, our rich history, our real and valid struggles with ableism, etc., this book isn’t the right one. Instead, I would recommend Care Work or Disability Visibility.
February 8, 2022
I feel almost guilty admitting that, although I certainly support her main tenets of the innate autonomy and self-determination and the need for much greater accessibility in the public and private sphere for people with disabilities, I disagreed with a couple of points:
One, oftentimes one's life would be "better" without a disability. I say this as a person with a chronic, very annoying and potentially dangerous and likely to be eventually debilitating disease. Can I really speak for everyone with a disability? No. But can she just as easily say that no one missing a limb, an organ, a biological process would rather just be "normal"? (Not that simply being normal's an option...)
Two, i firmly believe that sometimes people with disabilities need a certain level of exclusion to meet their needs when it comes to education. I taught students and young adults with the most profound intellectual disabilities. They certainly do not need to be hidden away and should not be, BUT they do need a learning environment for core academics and life skills that often looks veryyyy different than what nondisabled students are placed in. The hustle and bustle of 25 kids around them would overload the senses of some; the need for intense prompting, guiding, lesson modification, and content paraphrasing to make a "regular ed" lesson meaningful to a child who cannot talk ot read would in itself be cruel. Special education classrooms allow for the creative substitution needed to make content accessible and relevant to students with severe cognitive disabilities.
(Of course, in a perfect world all children would have personalized hands-on learning opportunities in small classrooms, but that's far from our world today. )
There was one thing that struck me. I have had close friends share with me that they'd rather die than live the life I live. In my opinion, if one takes nothing else from the book, at least take some recognition that the entire idea of telling someone that you couldn't bear to live their life due to their disability is a cruel and heartless thing to say that is both offensive and shows you to be a weak, shallow being.
That is all.
One, oftentimes one's life would be "better" without a disability. I say this as a person with a chronic, very annoying and potentially dangerous and likely to be eventually debilitating disease. Can I really speak for everyone with a disability? No. But can she just as easily say that no one missing a limb, an organ, a biological process would rather just be "normal"? (Not that simply being normal's an option...)
Two, i firmly believe that sometimes people with disabilities need a certain level of exclusion to meet their needs when it comes to education. I taught students and young adults with the most profound intellectual disabilities. They certainly do not need to be hidden away and should not be, BUT they do need a learning environment for core academics and life skills that often looks veryyyy different than what nondisabled students are placed in. The hustle and bustle of 25 kids around them would overload the senses of some; the need for intense prompting, guiding, lesson modification, and content paraphrasing to make a "regular ed" lesson meaningful to a child who cannot talk ot read would in itself be cruel. Special education classrooms allow for the creative substitution needed to make content accessible and relevant to students with severe cognitive disabilities.
(Of course, in a perfect world all children would have personalized hands-on learning opportunities in small classrooms, but that's far from our world today. )
There was one thing that struck me. I have had close friends share with me that they'd rather die than live the life I live. In my opinion, if one takes nothing else from the book, at least take some recognition that the entire idea of telling someone that you couldn't bear to live their life due to their disability is a cruel and heartless thing to say that is both offensive and shows you to be a weak, shallow being.
That is all.
May 6, 2022
3.5 stars.
This is MOSTLY an amazing book. This is the book that, as a disabled person for these last 13+ years, I would love to be so much more common knowledge. It is most certainly one that I will be recommending to anyone and everyone that wants to know more about the real-life experience and actual barriers faced by millions of us that live life with disabilities. The tone is light and friendly, while discussing very important topics and themes. And the audiobook is very well read by the author.
I am taking one full star off of my what should have been a 4.5-star book because, as a non-American, I am so incredibly sick of the unnecessary centring of the US. I find it to be such a lazy and exclusionary choice. This book should either have included an international history chapter, or it should have been titled *Demystifying Disability in the US* (in which case, I likely would have skipped it entirely).
**THINGS I LOVE ABOUT THIS BOOK:**
* The cover.
* The overall light and friendly tone.
* Generally very inclusive (except regarding history outside of the US). The author is clear that the *disabled community* is an umbrella term that encompasses a vastly diverse community, both on the spectrum of physical, mental and/or cognitive disabilities, but also within individuals themselves. Not everyone is happy using the same terminology, for example, though there are generally only a few mainly-used options. The best way to know what someone prefers is to ask.
* The discussion of privilege and intersectionality, and how it still applies to those of us that are disabled and identify in certain ways. I would have liked to see a lengthier discussion on this topic, though I got the sense that the author struggled with the concept.
* I particularly loved the “dos and don’ts of disability etiquette�. Profound, well explained and non-judgemental. And it is amazing how despite the vast range of disabilities, disability life experiences and unique characters of individuals with disabilities, that so many of us face the same invasive (and often unkind) treatment.
**THINGS I REALLY DISLIKED ABOUT THIS BOOK:**
* This REALLY guts me. So many American authors choose to focus primarily or exclusively on the US to the point of ridiculousness. This book definitely falls into that category. And though the author says that it is the history to at they are most personally grateful for, I find that it is lazy and exclusive.
For example, though the author throws out a handful of international/non-American examples later in the book, they included in the history chapter when the US first hosted the Paralympic Games, rather than sharing when/how they were formed in the first place. Ugh. Talk about centring the US to exclusion. Plus, chapter three takes up almost 20% of a four-hour audiobook!
Sure, many of the examples were interesting on their own but they didn’t mean anything to me (I personally would have skipped at least the second half of chapter three, but I feel that as an ARC reviewer that I need to listen to the entirety of an audiobook to give a fair review).
This book should either have included an international history chapter following the same decadal timeline, skipped the vast majority of chapter three or it should have been titled *Demystifying Disability in the US*. For an author that frequently repeats how important representation is and how much it matters, they really fell flat in the disability history department.
* I would have liked to see much more on intersectionality, how much it matters, and given examples of different levels of barriers experienced by those who are marginalized for multiple reasons - centring the voices of those who enjoy much less privilege than the author. I got the sense that the author didn’t fully comprehend this concept though (certainly not as well as the rest of concepts).
* Though only evident in a couple/few offhand comments, it seems like the author has very little compassion for the grief that so many face when becoming disabled later in life. Giving up much or everything that you have even known, while navigating pain and a whole new world, and likely mountains of cruel paperwork at the same time is incredibly challenging. Not everyone is going to go straight into thinking that their new disabilities are a superpower or a gift. Some don’t ever get there.
**Conclusion:**
All-in-all, this is a very well-written, thought-provoking, essential contribution on disability. I would highly recommend it, especially if you are American. If you aren’t, know that almost 20% of the book centres the US to absolute exclusion and much of the rest of the text does so, albeit less strikingly. Had it not been so US-centric (or had that been made obvious in the title), I would have given it 4.5 stars.
Thank you to the author Emily Ladau, the publisher Ten Speed Press, and NetGalley for an advanced copy of the audiobook in exchange for my honest review/opinion.
This is MOSTLY an amazing book. This is the book that, as a disabled person for these last 13+ years, I would love to be so much more common knowledge. It is most certainly one that I will be recommending to anyone and everyone that wants to know more about the real-life experience and actual barriers faced by millions of us that live life with disabilities. The tone is light and friendly, while discussing very important topics and themes. And the audiobook is very well read by the author.
I am taking one full star off of my what should have been a 4.5-star book because, as a non-American, I am so incredibly sick of the unnecessary centring of the US. I find it to be such a lazy and exclusionary choice. This book should either have included an international history chapter, or it should have been titled *Demystifying Disability in the US* (in which case, I likely would have skipped it entirely).
**THINGS I LOVE ABOUT THIS BOOK:**
* The cover.
* The overall light and friendly tone.
* Generally very inclusive (except regarding history outside of the US). The author is clear that the *disabled community* is an umbrella term that encompasses a vastly diverse community, both on the spectrum of physical, mental and/or cognitive disabilities, but also within individuals themselves. Not everyone is happy using the same terminology, for example, though there are generally only a few mainly-used options. The best way to know what someone prefers is to ask.
* The discussion of privilege and intersectionality, and how it still applies to those of us that are disabled and identify in certain ways. I would have liked to see a lengthier discussion on this topic, though I got the sense that the author struggled with the concept.
* I particularly loved the “dos and don’ts of disability etiquette�. Profound, well explained and non-judgemental. And it is amazing how despite the vast range of disabilities, disability life experiences and unique characters of individuals with disabilities, that so many of us face the same invasive (and often unkind) treatment.
**THINGS I REALLY DISLIKED ABOUT THIS BOOK:**
* This REALLY guts me. So many American authors choose to focus primarily or exclusively on the US to the point of ridiculousness. This book definitely falls into that category. And though the author says that it is the history to at they are most personally grateful for, I find that it is lazy and exclusive.
For example, though the author throws out a handful of international/non-American examples later in the book, they included in the history chapter when the US first hosted the Paralympic Games, rather than sharing when/how they were formed in the first place. Ugh. Talk about centring the US to exclusion. Plus, chapter three takes up almost 20% of a four-hour audiobook!
Sure, many of the examples were interesting on their own but they didn’t mean anything to me (I personally would have skipped at least the second half of chapter three, but I feel that as an ARC reviewer that I need to listen to the entirety of an audiobook to give a fair review).
This book should either have included an international history chapter following the same decadal timeline, skipped the vast majority of chapter three or it should have been titled *Demystifying Disability in the US*. For an author that frequently repeats how important representation is and how much it matters, they really fell flat in the disability history department.
* I would have liked to see much more on intersectionality, how much it matters, and given examples of different levels of barriers experienced by those who are marginalized for multiple reasons - centring the voices of those who enjoy much less privilege than the author. I got the sense that the author didn’t fully comprehend this concept though (certainly not as well as the rest of concepts).
* Though only evident in a couple/few offhand comments, it seems like the author has very little compassion for the grief that so many face when becoming disabled later in life. Giving up much or everything that you have even known, while navigating pain and a whole new world, and likely mountains of cruel paperwork at the same time is incredibly challenging. Not everyone is going to go straight into thinking that their new disabilities are a superpower or a gift. Some don’t ever get there.
**Conclusion:**
All-in-all, this is a very well-written, thought-provoking, essential contribution on disability. I would highly recommend it, especially if you are American. If you aren’t, know that almost 20% of the book centres the US to absolute exclusion and much of the rest of the text does so, albeit less strikingly. Had it not been so US-centric (or had that been made obvious in the title), I would have given it 4.5 stars.
Thank you to the author Emily Ladau, the publisher Ten Speed Press, and NetGalley for an advanced copy of the audiobook in exchange for my honest review/opinion.
September 20, 2021
In short, this is an invaluable resource and one I will return to for guidance.
I raced through this book in two days, but honestly it deserves a closer rereading. I was so excited by its release because I'd heard the author speak at a webinar and found such insight and value in what she shared. The book is short and very digestible, but covers a breadth of topics and is packed with useful tips. This is a book I wish I could have read when I was 14, but I'm so glad it's a resource for me and others now. I've already brought it up in conversations with friends, who also have disabilities, to help consider how to respond to ableism we experience. And it saved me in an emergency this weekend when I was able to speak up for myself with more conviction than I'd otherwise have. I will be using the tools I learn here as I learn how to be a better self-advocate and a better advocate to others, as I navigate how to bring attention to issues faced by people with disabilities while setting the right tone. I'd recommend it to anyone really, as all our lives are touched by disability, whether directly or indirectly, but I especially wish healthcare professionals, including PTs and OTs, read this, to have them understand that people with disabilities deserve every bit as much support and medical care (beyond individuals' pre-existing conditions) as those without long-term disabilities. My friend who trained at the leading US medical schools says she received no training on disability issues, yet these are the individuals tasked with rationing care. Having medical students read this would be a huge step in the right direction, though just the beginning and no substitute for laws that codify the rights of people with disabilities beyond the ADA, which is itself minimally enforced. It boils down to recognizing our lives deserve as much respect and that we have every right to full access and opportunity as anyone else. I also appreciated the discussion of the different movements within the disability community, as these nuances were very new to me. And lastly, I think the author set the perfect tone, calling us in instead of calling us out, as we seek to educate ourselves on what is called "disability etiquette," something we can all benefit from learning about, as we are only ever experts on our own experiences.
I raced through this book in two days, but honestly it deserves a closer rereading. I was so excited by its release because I'd heard the author speak at a webinar and found such insight and value in what she shared. The book is short and very digestible, but covers a breadth of topics and is packed with useful tips. This is a book I wish I could have read when I was 14, but I'm so glad it's a resource for me and others now. I've already brought it up in conversations with friends, who also have disabilities, to help consider how to respond to ableism we experience. And it saved me in an emergency this weekend when I was able to speak up for myself with more conviction than I'd otherwise have. I will be using the tools I learn here as I learn how to be a better self-advocate and a better advocate to others, as I navigate how to bring attention to issues faced by people with disabilities while setting the right tone. I'd recommend it to anyone really, as all our lives are touched by disability, whether directly or indirectly, but I especially wish healthcare professionals, including PTs and OTs, read this, to have them understand that people with disabilities deserve every bit as much support and medical care (beyond individuals' pre-existing conditions) as those without long-term disabilities. My friend who trained at the leading US medical schools says she received no training on disability issues, yet these are the individuals tasked with rationing care. Having medical students read this would be a huge step in the right direction, though just the beginning and no substitute for laws that codify the rights of people with disabilities beyond the ADA, which is itself minimally enforced. It boils down to recognizing our lives deserve as much respect and that we have every right to full access and opportunity as anyone else. I also appreciated the discussion of the different movements within the disability community, as these nuances were very new to me. And lastly, I think the author set the perfect tone, calling us in instead of calling us out, as we seek to educate ourselves on what is called "disability etiquette," something we can all benefit from learning about, as we are only ever experts on our own experiences.
August 19, 2024
Dora the Explorer inspired book about disability.
---
What I mean by Dora the Explorer inspired, is:
I get that Ladau is trying to be reassuring and informal, but it comes off poorly mostly because the book as a whole is well written and mostly in third person.
---
Which brings me to another gripe of mine, the shifting point of view. We go from formal third person when discussing disability generally, to first person when Ladau connects issues to her personal experiences, to second person when Ladau teaches (Dora Mode).
---
And here's my bigger problem with the book, it's "one woman's take on disability" while also marketed as a "practical, intersectional guide [that] offers all readers a welcoming place to understand disability as part of the human experience." Do you see my issue here? I went into this book thinking it was broad in scope and yet it clearly is not.
---
I really wanted to like this but alas.
---
What I mean by Dora the Explorer inspired, is:
"Still with me? Great?"
"Phew! If this feels like a lot to taken in, that's okay."
"I'm really glad that we stuck together through this learning process, but here's the thing-- the process isn't over."
I get that Ladau is trying to be reassuring and informal, but it comes off poorly mostly because the book as a whole is well written and mostly in third person.
---
Which brings me to another gripe of mine, the shifting point of view. We go from formal third person when discussing disability generally, to first person when Ladau connects issues to her personal experiences, to second person when Ladau teaches (Dora Mode).
---
And here's my bigger problem with the book, it's "one woman's take on disability" while also marketed as a "practical, intersectional guide [that] offers all readers a welcoming place to understand disability as part of the human experience." Do you see my issue here? I went into this book thinking it was broad in scope and yet it clearly is not.
---
I really wanted to like this but alas.
October 10, 2021
While I’d recommend something with a bit more depth for an adult audience (and something less US-focused for an international audience), this would be a decent addition to a US-based secondary school library. A potentially solid 101/introductory text for a teenage audience.
December 28, 2023
The book is short but gets the job done, meeting its goals effectively. These include understanding disability history and identity, spotting and steering clear of ableism (discrimination against disabled individuals), adopting good disability etiquette, handling discussions about disability appropriately, making everyday communication and event planning accessible, and challenging disability stereotypes in media.
In its brief chapters, the author neatly sums up the key points. While admitting that certain behaviors are a matter of personal choice and that getting ideal reactions from the public is tough, the book, geared toward education and awareness, aims to spotlight the best responses. Personally, I might not have found some of the mentioned questions offensive, but I get that some members of the disabled community might see them that way.
Moreover, the author suggests respecting personal choices and stresses the importance of asking when in doubt. Adding practical rules of thumb for interacting with unfamiliar disabled individuals brings an extra layer to the book.
In my experience as a disabled person, I appreciated the author's keen observation of instances where disabled individuals exhibit the same condescending behaviors they themselves experience, like changing voice pitch or using patronizing language. This observation highlights the complexity of attitudes within the disabled community, something I noticed during my bachelor's studies. Even among university students pursuing their Bachelor's degrees, there were cases where some disabled individuals struggled to interact with others with different disabilities, and some believed they were superior to others in the disabled community.
This extra insight reinforces the author's message and underscores the need for a nuanced understanding of disability experiences, even among those directly affected. It stresses that creating a truly inclusive environment requires not only external awareness but also internal reflection within the disabled community.
A particularly interesting part of the book explores "Intersectionality," where individuals face multiple challenges simultaneously, like being disabled and belonging to another minority group. Overcoming not only the hurdles associated with disability but also those tied to gender, race, or nationality adds depth to the narrative.
In conclusion, I'm glad I picked up this book as it effectively addresses crucial issues related to disability, urging readers, including myself as a disabled person, to become informed allies and contribute to a more inclusive society.
In its brief chapters, the author neatly sums up the key points. While admitting that certain behaviors are a matter of personal choice and that getting ideal reactions from the public is tough, the book, geared toward education and awareness, aims to spotlight the best responses. Personally, I might not have found some of the mentioned questions offensive, but I get that some members of the disabled community might see them that way.
Moreover, the author suggests respecting personal choices and stresses the importance of asking when in doubt. Adding practical rules of thumb for interacting with unfamiliar disabled individuals brings an extra layer to the book.
In my experience as a disabled person, I appreciated the author's keen observation of instances where disabled individuals exhibit the same condescending behaviors they themselves experience, like changing voice pitch or using patronizing language. This observation highlights the complexity of attitudes within the disabled community, something I noticed during my bachelor's studies. Even among university students pursuing their Bachelor's degrees, there were cases where some disabled individuals struggled to interact with others with different disabilities, and some believed they were superior to others in the disabled community.
This extra insight reinforces the author's message and underscores the need for a nuanced understanding of disability experiences, even among those directly affected. It stresses that creating a truly inclusive environment requires not only external awareness but also internal reflection within the disabled community.
A particularly interesting part of the book explores "Intersectionality," where individuals face multiple challenges simultaneously, like being disabled and belonging to another minority group. Overcoming not only the hurdles associated with disability but also those tied to gender, race, or nationality adds depth to the narrative.
In conclusion, I'm glad I picked up this book as it effectively addresses crucial issues related to disability, urging readers, including myself as a disabled person, to become informed allies and contribute to a more inclusive society.
September 1, 2022
Loved it! Well-organized and extremely easy to digest. Some of this information will be review for many, but don't skip over it; even in rereading what you may consider the "basics," you may discover a couple things you didn't know. I should note that this book was written with a very U.S. American (rather than global) lens, for which I'd mostly recommend it to readers from the region.
August 24, 2023
Emily, thank you! I learned so much about my own ableism.
Highly highly encourage everyone to read/listen to this book. It’s eye opening, conversational, and straightforward in how ableist bias perpetuates society, media, and culture.
Highly highly encourage everyone to read/listen to this book. It’s eye opening, conversational, and straightforward in how ableist bias perpetuates society, media, and culture.
Read
April 24, 2022This saw a great introduction to disability justice, and How to not be a dick to disable ppl in your life. A good starting point for anyone interested!
January 14, 2023
It was just fine. I would say this book is a good intro to see if you’d want to learn more about disability. The author provides a lot of recommendations to other sources for further reading which I will check out.
What I liked about it was that it made me think more about how I refer to myself or some of the ableist beliefs that were put on me abt myself.
What I liked about it was that it made me think more about how I refer to myself or some of the ableist beliefs that were put on me abt myself.
January 24, 2022
As a disabled person I thought this was telling me what should offend me.
April 16, 2022
I loved that on first half and i learn a lot! But i dont know i got that weird feeling for the rest of that book :/
But anyway i think that is important to know everything that Emily is writing about
But anyway i think that is important to know everything that Emily is writing about
April 14, 2024
So this is the first time I read a book written by a person with disability!did I learn something New? Absolutely! Have I ever been ableist? Frankly I don’t remember. I often think that accessibility is not fully happening in our Arab countries, and now I realize that the west is not better than us as the changes in the laws only happened in the past 50-60 years. We might not have laws but we have the family that protects and nourishes the disabled. However I agree with the writer (who is very funny and made me smile and laugh many times whilst reading). We have no idea about what goes inside the body and the mind of the person with a disability, we cannot tell. We do act as ableist (at least I do, thinking that pattens worth). Now I must stop and think before saying anything as I don’t want to hurt their feelings.
Also a good point was raised, if we ask a disabled person to review or speak and write something, we must pay them as they are not paid enough and they need the funds.
I must check if we have laws to protect the disabled in our country.
Also I am going to watch the movie “me before you� again. I remember that I felt bad about voluntary death but now I feel that it’s wrong to do this movie and people with disability can have a fantastic life and showing a movie like this might give the disabled bad ideas.
Excerpts:
My name is Jenny, and I happen to be deaf.�
euphemisms (terms used to soften something deemed unpleasant, harsh, or offensive) for disabled or disability
Some of the most common examples to look out for include crazy, dumb, idiot, imbecile, insane, lame, moron, slow, and stupid. Words such as these were historically used to refer to people with disabilities, often as official diagnoses for people who were housed in institutions
In 1907, Indiana’s state legislature passed an ordinance known to be the first of its kind, calling for involuntary sterilization of “confirmed criminals, idiots, imbeciles, and rapists.� This dangerous practice is known as eugenics—a set of beliefs and practices intended to prevent people with “undesirable� traits from reproducing for the supposed betterment of humankind
Gallaudet University
In “Don’t Mourn for Us,� an essay by Autistic activist Jim Sinclair that broke early ground for the neurodiversity movement, Sinclair lamented, “The tragedy is not that we’re here, but that your world has no place for us to be.�
Ableism is attitudes, actions, and circumstances that devalue people because they are disabled or perceived as having a disability.�
But it’s not bitterness that drives me; it’s my passion to move toward a more accepting, loving, equitable world.
Accessibility is about making things more equitable so that disabled people have the same opportunities and support to thrive as do nondisabled people. It’s about removing barriers to participation, engagement, and understanding so that all people, regardless of ability, can experience the world around us to the fullest extent possible in ways that work for our minds and bodies.
Rebekah Taussig, in her book Sitting Pretty, gives voice to the emotional toll of physical inaccessibility:
Many days, I feel too vulnerable to leave my house, too fed up to subject myself to the gamble of strangers interacting with me, too tired to fight to occupy a corner of space. Inaccess-ibility over time tells me that I do not matter, I’m not wanted, do not belong. This land wasn’t made for me. So I stay in, keep to myself, avoid, cancel plans, carry anxiety in each fold and bend of my body, feel very alone and trapped and helpless.
Snap judgments rooted in stigma shouldn’t be a justifiable reason for so many people to ignore such a simple request.
I’m not saying that you have to go out of your way, unprompted, to explicitly acknowledge that you recognize someone is disabled, but, if it comes up in conversation, there’s no need to duck the mention of it like you would an incoming water balloon.
Sadly, the millions of fans of the book and movie don’t see it this way. They see a love story in which Will is noble for choosing death to free Louisa from being trapped in a future with him, and they see those who critique the exploitation of disability as a tragic plot device as bitter cynics. We’re not bitter, though; we just have the audacity to believe that disabled lives are worth living.
It’s a series of choices to build relationships, learn together, disagree without silencing the other. It’s about building up our capacity to honor difference and appreciate the messiness.�
Also a good point was raised, if we ask a disabled person to review or speak and write something, we must pay them as they are not paid enough and they need the funds.
I must check if we have laws to protect the disabled in our country.
Also I am going to watch the movie “me before you� again. I remember that I felt bad about voluntary death but now I feel that it’s wrong to do this movie and people with disability can have a fantastic life and showing a movie like this might give the disabled bad ideas.
Excerpts:
My name is Jenny, and I happen to be deaf.�
euphemisms (terms used to soften something deemed unpleasant, harsh, or offensive) for disabled or disability
Some of the most common examples to look out for include crazy, dumb, idiot, imbecile, insane, lame, moron, slow, and stupid. Words such as these were historically used to refer to people with disabilities, often as official diagnoses for people who were housed in institutions
In 1907, Indiana’s state legislature passed an ordinance known to be the first of its kind, calling for involuntary sterilization of “confirmed criminals, idiots, imbeciles, and rapists.� This dangerous practice is known as eugenics—a set of beliefs and practices intended to prevent people with “undesirable� traits from reproducing for the supposed betterment of humankind
Gallaudet University
In “Don’t Mourn for Us,� an essay by Autistic activist Jim Sinclair that broke early ground for the neurodiversity movement, Sinclair lamented, “The tragedy is not that we’re here, but that your world has no place for us to be.�
Ableism is attitudes, actions, and circumstances that devalue people because they are disabled or perceived as having a disability.�
But it’s not bitterness that drives me; it’s my passion to move toward a more accepting, loving, equitable world.
Accessibility is about making things more equitable so that disabled people have the same opportunities and support to thrive as do nondisabled people. It’s about removing barriers to participation, engagement, and understanding so that all people, regardless of ability, can experience the world around us to the fullest extent possible in ways that work for our minds and bodies.
Rebekah Taussig, in her book Sitting Pretty, gives voice to the emotional toll of physical inaccessibility:
Many days, I feel too vulnerable to leave my house, too fed up to subject myself to the gamble of strangers interacting with me, too tired to fight to occupy a corner of space. Inaccess-ibility over time tells me that I do not matter, I’m not wanted, do not belong. This land wasn’t made for me. So I stay in, keep to myself, avoid, cancel plans, carry anxiety in each fold and bend of my body, feel very alone and trapped and helpless.
Snap judgments rooted in stigma shouldn’t be a justifiable reason for so many people to ignore such a simple request.
I’m not saying that you have to go out of your way, unprompted, to explicitly acknowledge that you recognize someone is disabled, but, if it comes up in conversation, there’s no need to duck the mention of it like you would an incoming water balloon.
Sadly, the millions of fans of the book and movie don’t see it this way. They see a love story in which Will is noble for choosing death to free Louisa from being trapped in a future with him, and they see those who critique the exploitation of disability as a tragic plot device as bitter cynics. We’re not bitter, though; we just have the audacity to believe that disabled lives are worth living.
It’s a series of choices to build relationships, learn together, disagree without silencing the other. It’s about building up our capacity to honor difference and appreciate the messiness.�
Read
July 29, 20242024 reads: 213/250
this book serves as a guide to being a thoughtful ally to disabled people. emily ladau draws from her own experience as someone with larsen syndrome and as a wheelchair user, and other disabled activists� experiences. though it’s short, there’s a lot to learn from this book. i’d recommend this to anyone wanting more information on the history and current state of disability rights and on how to be a better ally to the disability community.
this book serves as a guide to being a thoughtful ally to disabled people. emily ladau draws from her own experience as someone with larsen syndrome and as a wheelchair user, and other disabled activists� experiences. though it’s short, there’s a lot to learn from this book. i’d recommend this to anyone wanting more information on the history and current state of disability rights and on how to be a better ally to the disability community.
July 28, 2024
Author talks about what words to use and what to avoid and it gets confusing and author admits that.
Author seem to see more problems than most disable people do. For example she finds these kind of comments offensive: "Wow, it's amazing how you get around in that chair". People are just happy to see her.
I think ableism is just another reason to hate non disabled people. Don't be so judgemental.
Author seem to see more problems than most disable people do. For example she finds these kind of comments offensive: "Wow, it's amazing how you get around in that chair". People are just happy to see her.
I think ableism is just another reason to hate non disabled people. Don't be so judgemental.
July 26, 2023
(Currently waffling a bit about star rating, but it's somewhere around 3 or 3.5)
This was a basic introduction to disability that included topics like language, brief history, media representation, and allyship. This author did do a lot with this in terms of including a lot of disabilities into this discussion without getting to lost in details that may have been beyond the scope of what she intended, but instead keeping to accessibility more broadly giving a variety of examples. She also does explain and incorporate intersectionality to a point, which was good to see in parts of this conversation. I think this could be helpful for people who are just starting to learn for teenagers and adults.
However, the issue that I run into with a lot of the more ally-focus texts is that they are so nice and accomodating to the oppressing class in question that so much ends up being watered down and the hand-holding becomes distracting. The history component was really neat but she cushioned it with comments about history being dry and boring and that she wouldn't take too long, which was offputting. Politically, it was also very watered down for my taste but that is what it is with most ally-centered texts like this. There was lots about how to change language and representation, not as much focus on economic inequality and violence outside of mentioning laws and history. She does explain intersectionality and applies it to disability but it only goes so far when talking about the power structures and issues that impact different groups (a glaring example being the limited disussion around prisons and police).
That being said, I did pick this up expecting similar issues to come up. But as I said at the beginning, this could be good for people just starting to learn. I learned some from the history component, and I think that the resources that she includes are quite helpful.
This was a basic introduction to disability that included topics like language, brief history, media representation, and allyship. This author did do a lot with this in terms of including a lot of disabilities into this discussion without getting to lost in details that may have been beyond the scope of what she intended, but instead keeping to accessibility more broadly giving a variety of examples. She also does explain and incorporate intersectionality to a point, which was good to see in parts of this conversation. I think this could be helpful for people who are just starting to learn for teenagers and adults.
However, the issue that I run into with a lot of the more ally-focus texts is that they are so nice and accomodating to the oppressing class in question that so much ends up being watered down and the hand-holding becomes distracting. The history component was really neat but she cushioned it with comments about history being dry and boring and that she wouldn't take too long, which was offputting. Politically, it was also very watered down for my taste but that is what it is with most ally-centered texts like this. There was lots about how to change language and representation, not as much focus on economic inequality and violence outside of mentioning laws and history. She does explain intersectionality and applies it to disability but it only goes so far when talking about the power structures and issues that impact different groups (a glaring example being the limited disussion around prisons and police).
That being said, I did pick this up expecting similar issues to come up. But as I said at the beginning, this could be good for people just starting to learn. I learned some from the history component, and I think that the resources that she includes are quite helpful.
April 3, 2022
This is challenging because I REALLY wanted to like this book. To give you some background, I am an intervention specialist in a school, both of my siblings have/had severe disabilities. I volunteer my time working with young adults with disabilities. I have spent a lot of time working with individuals with disabilities and many of my friends are disabled. I only share this to show that I am not new to the disabled community and consider myself to be and ally and advocate for individuals with disabilities. In the next breath, I also understand that this book is written by a member of the disabled community and there are experiences that she has that I will not be able to relate to, even as an ally.
The reason I was not fond of this book was because of the tone. In my opinion, it was a harsh and accusatory tone. It offered great information, but it seemed more informal than I would have hoped.
I am by no means an expert about individuals with disabilities and mean absolutely no disrespect to the author as I think this book could be good for people who want to know more about disabilities. As someone with a lot of experience with disabilities and learning a lot of this from an early age, i fear that people would read this book and feel guilty rather than empowered to make a change.
If you have had a different experience in life and don’t know much about disabilities, this would be a good book for you but keep in mind that it can sound harsh at times. I think a change in tone would have been beneficial at times.
The reason I was not fond of this book was because of the tone. In my opinion, it was a harsh and accusatory tone. It offered great information, but it seemed more informal than I would have hoped.
I am by no means an expert about individuals with disabilities and mean absolutely no disrespect to the author as I think this book could be good for people who want to know more about disabilities. As someone with a lot of experience with disabilities and learning a lot of this from an early age, i fear that people would read this book and feel guilty rather than empowered to make a change.
If you have had a different experience in life and don’t know much about disabilities, this would be a good book for you but keep in mind that it can sound harsh at times. I think a change in tone would have been beneficial at times.
October 28, 2021
While in no way comprehensive and at times maybe too non-threatening to the status quo, this book is an incredibly easy to understand guide to many facets of ability and disability that you may or may not have thought or wondered about. This is a great book to jumpstart your learning and accompliceship!
November 2, 2023
4.5/5 stars
As an able-bodied person, my rating on this isn’t a reflection of the content and points made in this book (as I don’t think it’s my place to comment on that) but rather things like writing, structure of the book, etc.
That being said, I thought this was a great read! The author writes in a way that’s very easy to understand. I’ll admit that I learned about some of my own unintentional ableist actions and will continue to work to do better.
One thing I do think could have gone deeper is the history portion. While the title of that section calls out that it’s an incomplete overview, I do think that making that section a little less US centric would have been nice for anyone outside the US who picks up this book. Not necessarily omitting what’s there, but just adding to it.
As an able-bodied person, my rating on this isn’t a reflection of the content and points made in this book (as I don’t think it’s my place to comment on that) but rather things like writing, structure of the book, etc.
That being said, I thought this was a great read! The author writes in a way that’s very easy to understand. I’ll admit that I learned about some of my own unintentional ableist actions and will continue to work to do better.
One thing I do think could have gone deeper is the history portion. While the title of that section calls out that it’s an incomplete overview, I do think that making that section a little less US centric would have been nice for anyone outside the US who picks up this book. Not necessarily omitting what’s there, but just adding to it.
January 17, 2024
WOW. This book opened up my eyes so much to understanding the world of disability a bit more. Highly recommend.
Top pull-out quotes for me:
“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.�
“It comes down to this: Don’t make assumptions about what people can and can’t do. And remember that we all do and process things differently.�
“I challenge you to take all your stereotypical preconceived notions about what disability does or doesn’t look like and throw them out the window. Skip the assumptions and instead focus on incorporating disability etiquette, and prioritizing accessibility, into all your interactions.�
“Ask yourself, ‘Is this a positive representation of disability that humanizes disabled people, or does this media just use disability to play to emotions?’�
“The inclination to scapegoat mental illness is really just an ableist way to derail the conversations that need to be had about putting an end to mass violence.�
“The first step to being an ally is unlearning this misconception and recognizing that disabled people aren’t in need of saving. We’re in need of a world that recognizes our rights and our humanity without question.�
“If you are in a position of privilege, rather than using that position to amplify your own voice, ask yourself whose perspectives are missing from the conversation. Then lift up and amplify the perspectives of those people who should be centered instead.�
Top pull-out quotes for me:
“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.�
“It comes down to this: Don’t make assumptions about what people can and can’t do. And remember that we all do and process things differently.�
“I challenge you to take all your stereotypical preconceived notions about what disability does or doesn’t look like and throw them out the window. Skip the assumptions and instead focus on incorporating disability etiquette, and prioritizing accessibility, into all your interactions.�
“Ask yourself, ‘Is this a positive representation of disability that humanizes disabled people, or does this media just use disability to play to emotions?’�
“The inclination to scapegoat mental illness is really just an ableist way to derail the conversations that need to be had about putting an end to mass violence.�
“The first step to being an ally is unlearning this misconception and recognizing that disabled people aren’t in need of saving. We’re in need of a world that recognizes our rights and our humanity without question.�
“If you are in a position of privilege, rather than using that position to amplify your own voice, ask yourself whose perspectives are missing from the conversation. Then lift up and amplify the perspectives of those people who should be centered instead.�
Read
August 5, 2022*No rating because how do you rate someone telling you how to be better? Not to mention it's my job to learn and not to critique. I did learn things though!
February 9, 2024
Very accessible, well constructed, & informative! It’s definitely an introduction but it makes that clear from the jump. This is a valuable resource!
June 6, 2023
“Demystifying Disability� is a nonfiction book that attempts to bridge to gap between disabled and nondisabled by helping nondisabled people become better allies to the disabled by writing a book using an approachable writing style.
The book consists of an introduction, six chapters, a conclusion, further reading and resources, acknowledgements, information about the author, and an index.
In the introduction, “Why do we need to demystify disability?� author Emily Ladau shares that one billion people around the world are disabled and that this book is meant to be a safe space to learn how to interact with those who are disabled without being biased. Ladau shares her childhood as someone multiple disabilities as well as growing up with a mother who passed then gene for Larsen syndrome to Emily during pregnancy and that she and her mother both have Larsen syndrome. I appreciate that in the introduction, Ladau’s states that she’s not a disability expert, disability is not one-size-fits-all, and the book is not meant to represent the experience of all disabled people; even those with shared DNA and disabilities can present in totally different ways.
In chapter one, “So, What Is Disability Anyway,� a definition of disability is presented and Ladau works to highlight how dictionary definitions focuses on what a person can or can’t do. I liked how Ladau asks other disabled people (including her mother) how they personally define disability.
I learned so much in this chapter such as stopping the use of the word "handicapped" in favor of using person first language (PFL) such as “person with a disability� or using identity first language (IFL) such as “disabled person.� One particular disability self-definition that stuck with me was “that disability isn’t static. It evolves, both physically and emotionally.� It was interesting to learn about the use the capital letters to identify being a part of a bigger community (Autistic person) while using a lowercase letter (such as b for blind) refers to a physical state of being. By the end of the chapter, Ladau encourages the reader to stop dancing around the words "disabled" or "disability" by using words like differently abled, handi-capable, mentally or physically challenged, special needs, twice exceptional and become comfortable with saying "disabled."
In chapter two, “Understanding Disability As Part of a Whole Person,� Ladau works to more accurately show how diverse the disabled community can be. Although Ladau takes pride in being a member of the disabled community, it's a part of her, not all of her. I liked Ladau’s use of disability identity as a pizza in that the crust is the foundation of who you are and toppings include having or not having a disability, were they born with the disability or did it occur later in life, if it’s visible or invisible, where they live, how people view their disability, how their culture the disability, race, gender, and sexuality.
Chapter two introduces terms such as "intersectionality" which means that every identity a person has will intersect to make them who they are and "privilege" which refers to advantages some people have in comparison to others because of identities that they do or do not have. Ladau clearly accepts that as a disabled, straight, white, Jewish, cisgender woman, she is afforded privilege that people of color (disabled or nondisabled) do not.
The broad list of types of disabilities presented in this chapter was extremely helpful in that I became aware of such disabilities including chronic illnesses, communication disorders, developmental disabilities, hearing disabilities, intellectual disabilities, learning disabilities, mental health disabilities, neurological disabilities, physical disabilities, vision disabilities, apparent, nonapparent disabilities, and temporarily disabled. Interestingly enough, disabilities can coexist within a person. In addition, a broad list of thinking of disabilities were also presented such as the medical model, social model, charity model, cultural model, economic model, human rights model, and religious model.
In chapter three, “An (Incomplete) Overview of Disability History,� Ladau educates the reader about disability history and mentions the three historical figures, Harriet Tubman, Frida Kahlo, and President Franklin Delano Roosevelt and their how disability played into their lives. Disability history can be traced back as far an ancient Sparta where disabled infants were left to die because they were deemed as not worthy.
During the 1930’s, the League of the Physically Handicapped was formed as well as the Social Security Act of 1935 which provided vocational rehabilitation to help disabled people begin or return to a job. In 1940, the National Foundation of the Blind was created while in 1946, Paralyzed Veterans of America PVA) was created. In 1956, Social Security Disability Insurance was established. In 1968, the Special Olympics was started along with the Architectural Barriers Act to mandate accessibility in buildings. In 1975, the Education for All Handicapped Children Act (later renamed Individuals with Disabilities Education Act-IDEA) was passed and established the right for disable kids to access public education. In 1983, the disability activist group American Disabled for Attendant Programs Today (ADAPT.) in 1984, the Voting Accessibility for the Elderly and Handicapped was established to ensure that polling places would be accessible to disabled people. In 1990, the Americans with Disability Act (ADA) rehabilitation act was passed after a group of people crawled up the steps of the U.S. Capitol. In 2010. President Barack Obama signs the “Twenty-First Century Communications and Video Accessibility Act into law which expands digital communication technology for people with disabilities. Despite all the disability legislation and changes have been made, there is still a long way to go.
Ladau highlights other movements within the disability community such as the independent living movement, disability justice movement, self-advocacy movement, neurodiversity movement, and psychiatric survivors movement.
In chapter four, “Ableism and Accessibility,� I realized how ableist our society is and how hard it is for disabled people to live in the world. Ladau shares that despite fighting against ableism, she’s been ableist towards other disabled people but is working to be more mindful of her past behavior. It was fascinating to learn of different accessible features other than ramps or elevators such as quiet rooms, flexible work hours, sending slides in advance so people can have extra time to process the information, having live captioning and sign language interpreters, and designing area for those with mobility and mobility equipment. By not providing accessible spaces, this communicates to disabled people are not welcome. This chapter has inspired me to investigate how to make my job’s website more accessible to name it more welcoming for disabled people.
In chapter five, “Disability Etiquette 101,� Ladau helps the reader better interact with disabled people and the importance of treating others as you want to be treated. Treating disabled people with condescension or being rude is insensitive and it’s vital to be thoughtful and keep inappropriate questions to yourself. A good rule of thumb is “if you wouldn’t ask a nondisabled person the same question in the same context, don’t ask a disabled person. There is a time when it is appropriate to question a disabled person as a way to generate seek information by asking “May I ask a question?� When planning events, it’s important to consider accessibility needs. By asking questions, this shows care and a desire to understand their disability better.
Disabled etiquette do's include respecting those using service dogs and refrain from touching the dog unless the handler says it's okay, talking directly to the disabled person and don't ignore them, when speaking to a blind person, verbally identify themselves before speaking, and when speaking to a deaf person, look directly at the deaf person, not the interpreter. Disabled etiquette don’ts includes talking down to disabled people, trying to help without asking first, assuming someone’s disability status, using accessible amenities if you don’t need them, pretending you “get it,� and praying over disabled people. Ladau also provides advice on disability etiquette in relation of children which is to decide on a case by case basis and whether to use it as a teachable moment or to ignore it. In the end, it’s all about respect.
In chapter six, “Disability in the Media,� Ladau begins with a personal story of her mom’s childhood, excitement of seeing a kid like her on a children’s television show which led to a lifelong friendship. Ladau shares her experience seeing few representations of herself on television and appearing on Sesame Street and the power of positive representation of disabled people on television. Discusses token representation of the disabled on television of white, straight, cisgender person sitting in a wheelchair versus showing the diverse disabled community.
Ladau defines and describes the purpose of “inspiration porn� and explains popular “inspiration porn� tropes as overcoming adversity, life’s moments, great expectations, and good deeds. Opposite of “inspiration porn� is “pity porn� and Ladau focuses on Jerry Lewis Labor Day telethon which aimed to tug at heartstrings to raise money for the Muscular Dystrophy Association while not treating the disabled children as people. “Pity Porn� tropes include the “tragedy� of physical disability, stigmatizing mental illness, freaks and other “abnormalities,� Ladau ends the chapter by highlighting positive portrayals of disabled people in media including disabled actors, models but appreciates the progress the has been made. It is insulting to the disabled community to have nondisabled actors playing disabled characters when disabled actors are available for those roles.
In the conclusion, “Calling All Allies and Accomplices,� Ladau tells the reader that allyship is something that is better shown than said. Definitions are presented regarding the difference between being an ally vs an accomplice. Allies help people who are marginalized to make the most of their life while an accomplice works side by side with marginalized people. Allyship should be viewed as a journey not a destination and recognizing that disabled don’t need to be saved and it’s important to use positions of privilege to bring attention to the plight of disabled people. Ladau ends the book by thanking the reader for taking the opportunity to learn about how to change their perspective on disability and to continue to keep learning.
The book consists of an introduction, six chapters, a conclusion, further reading and resources, acknowledgements, information about the author, and an index.
In the introduction, “Why do we need to demystify disability?� author Emily Ladau shares that one billion people around the world are disabled and that this book is meant to be a safe space to learn how to interact with those who are disabled without being biased. Ladau shares her childhood as someone multiple disabilities as well as growing up with a mother who passed then gene for Larsen syndrome to Emily during pregnancy and that she and her mother both have Larsen syndrome. I appreciate that in the introduction, Ladau’s states that she’s not a disability expert, disability is not one-size-fits-all, and the book is not meant to represent the experience of all disabled people; even those with shared DNA and disabilities can present in totally different ways.
In chapter one, “So, What Is Disability Anyway,� a definition of disability is presented and Ladau works to highlight how dictionary definitions focuses on what a person can or can’t do. I liked how Ladau asks other disabled people (including her mother) how they personally define disability.
I learned so much in this chapter such as stopping the use of the word "handicapped" in favor of using person first language (PFL) such as “person with a disability� or using identity first language (IFL) such as “disabled person.� One particular disability self-definition that stuck with me was “that disability isn’t static. It evolves, both physically and emotionally.� It was interesting to learn about the use the capital letters to identify being a part of a bigger community (Autistic person) while using a lowercase letter (such as b for blind) refers to a physical state of being. By the end of the chapter, Ladau encourages the reader to stop dancing around the words "disabled" or "disability" by using words like differently abled, handi-capable, mentally or physically challenged, special needs, twice exceptional and become comfortable with saying "disabled."
In chapter two, “Understanding Disability As Part of a Whole Person,� Ladau works to more accurately show how diverse the disabled community can be. Although Ladau takes pride in being a member of the disabled community, it's a part of her, not all of her. I liked Ladau’s use of disability identity as a pizza in that the crust is the foundation of who you are and toppings include having or not having a disability, were they born with the disability or did it occur later in life, if it’s visible or invisible, where they live, how people view their disability, how their culture the disability, race, gender, and sexuality.
Chapter two introduces terms such as "intersectionality" which means that every identity a person has will intersect to make them who they are and "privilege" which refers to advantages some people have in comparison to others because of identities that they do or do not have. Ladau clearly accepts that as a disabled, straight, white, Jewish, cisgender woman, she is afforded privilege that people of color (disabled or nondisabled) do not.
The broad list of types of disabilities presented in this chapter was extremely helpful in that I became aware of such disabilities including chronic illnesses, communication disorders, developmental disabilities, hearing disabilities, intellectual disabilities, learning disabilities, mental health disabilities, neurological disabilities, physical disabilities, vision disabilities, apparent, nonapparent disabilities, and temporarily disabled. Interestingly enough, disabilities can coexist within a person. In addition, a broad list of thinking of disabilities were also presented such as the medical model, social model, charity model, cultural model, economic model, human rights model, and religious model.
In chapter three, “An (Incomplete) Overview of Disability History,� Ladau educates the reader about disability history and mentions the three historical figures, Harriet Tubman, Frida Kahlo, and President Franklin Delano Roosevelt and their how disability played into their lives. Disability history can be traced back as far an ancient Sparta where disabled infants were left to die because they were deemed as not worthy.
During the 1930’s, the League of the Physically Handicapped was formed as well as the Social Security Act of 1935 which provided vocational rehabilitation to help disabled people begin or return to a job. In 1940, the National Foundation of the Blind was created while in 1946, Paralyzed Veterans of America PVA) was created. In 1956, Social Security Disability Insurance was established. In 1968, the Special Olympics was started along with the Architectural Barriers Act to mandate accessibility in buildings. In 1975, the Education for All Handicapped Children Act (later renamed Individuals with Disabilities Education Act-IDEA) was passed and established the right for disable kids to access public education. In 1983, the disability activist group American Disabled for Attendant Programs Today (ADAPT.) in 1984, the Voting Accessibility for the Elderly and Handicapped was established to ensure that polling places would be accessible to disabled people. In 1990, the Americans with Disability Act (ADA) rehabilitation act was passed after a group of people crawled up the steps of the U.S. Capitol. In 2010. President Barack Obama signs the “Twenty-First Century Communications and Video Accessibility Act into law which expands digital communication technology for people with disabilities. Despite all the disability legislation and changes have been made, there is still a long way to go.
Ladau highlights other movements within the disability community such as the independent living movement, disability justice movement, self-advocacy movement, neurodiversity movement, and psychiatric survivors movement.
In chapter four, “Ableism and Accessibility,� I realized how ableist our society is and how hard it is for disabled people to live in the world. Ladau shares that despite fighting against ableism, she’s been ableist towards other disabled people but is working to be more mindful of her past behavior. It was fascinating to learn of different accessible features other than ramps or elevators such as quiet rooms, flexible work hours, sending slides in advance so people can have extra time to process the information, having live captioning and sign language interpreters, and designing area for those with mobility and mobility equipment. By not providing accessible spaces, this communicates to disabled people are not welcome. This chapter has inspired me to investigate how to make my job’s website more accessible to name it more welcoming for disabled people.
In chapter five, “Disability Etiquette 101,� Ladau helps the reader better interact with disabled people and the importance of treating others as you want to be treated. Treating disabled people with condescension or being rude is insensitive and it’s vital to be thoughtful and keep inappropriate questions to yourself. A good rule of thumb is “if you wouldn’t ask a nondisabled person the same question in the same context, don’t ask a disabled person. There is a time when it is appropriate to question a disabled person as a way to generate seek information by asking “May I ask a question?� When planning events, it’s important to consider accessibility needs. By asking questions, this shows care and a desire to understand their disability better.
Disabled etiquette do's include respecting those using service dogs and refrain from touching the dog unless the handler says it's okay, talking directly to the disabled person and don't ignore them, when speaking to a blind person, verbally identify themselves before speaking, and when speaking to a deaf person, look directly at the deaf person, not the interpreter. Disabled etiquette don’ts includes talking down to disabled people, trying to help without asking first, assuming someone’s disability status, using accessible amenities if you don’t need them, pretending you “get it,� and praying over disabled people. Ladau also provides advice on disability etiquette in relation of children which is to decide on a case by case basis and whether to use it as a teachable moment or to ignore it. In the end, it’s all about respect.
In chapter six, “Disability in the Media,� Ladau begins with a personal story of her mom’s childhood, excitement of seeing a kid like her on a children’s television show which led to a lifelong friendship. Ladau shares her experience seeing few representations of herself on television and appearing on Sesame Street and the power of positive representation of disabled people on television. Discusses token representation of the disabled on television of white, straight, cisgender person sitting in a wheelchair versus showing the diverse disabled community.
Ladau defines and describes the purpose of “inspiration porn� and explains popular “inspiration porn� tropes as overcoming adversity, life’s moments, great expectations, and good deeds. Opposite of “inspiration porn� is “pity porn� and Ladau focuses on Jerry Lewis Labor Day telethon which aimed to tug at heartstrings to raise money for the Muscular Dystrophy Association while not treating the disabled children as people. “Pity Porn� tropes include the “tragedy� of physical disability, stigmatizing mental illness, freaks and other “abnormalities,� Ladau ends the chapter by highlighting positive portrayals of disabled people in media including disabled actors, models but appreciates the progress the has been made. It is insulting to the disabled community to have nondisabled actors playing disabled characters when disabled actors are available for those roles.
In the conclusion, “Calling All Allies and Accomplices,� Ladau tells the reader that allyship is something that is better shown than said. Definitions are presented regarding the difference between being an ally vs an accomplice. Allies help people who are marginalized to make the most of their life while an accomplice works side by side with marginalized people. Allyship should be viewed as a journey not a destination and recognizing that disabled don’t need to be saved and it’s important to use positions of privilege to bring attention to the plight of disabled people. Ladau ends the book by thanking the reader for taking the opportunity to learn about how to change their perspective on disability and to continue to keep learning.
This entire review has been hidden because of spoilers.
July 21, 2024
Genuinely one of the best primers for disability studies there is. It combines the work of so many and explains everything quite well! More breadth than depth but will definitely be using this as a go to when people ask for book recommendations on disability.
June 4, 2021
As soon as I found this on NetGalley, I knew I had to request it. I liked the definitions of disability from interviewees and the fact that one of the people is someone I know from an online disability community.
I have Cerebral Palsy, Hydrocephalus and four visual impairments and have so many experiences of different treatment from different people throughout my life.
I have experienced both ignorance and acceptance from people and life has been, and still is, a constant fight for inclusion.
I know so many people with disabilities will identify with me on this.
15% of the world's population has some type of disability.
I don't need disability to be demystified for me as I live with my disabilities every day but this is exactly the type of book that I know could help many people who need to know more about the world of disability and what those of us with disabilities are constantly up against.
Demystifying Disability will be good for those who think they "know it all" as they live with, or know, people with a disability. I believe everyone can learn more.
Like Emily Ladau, I am a wheelchair user and I identified with her experiences. I also learnt about her disability.
Another part of this book that I loved was her discussion of visible versus invisible disabilities, since I have both. My glasses and wheelchair are a marker of my visual disabilities, as are my scars from my shunt surgeries for hydrocephalus.
However, unless I let people know I have hydrocephalus, let them know what it is and how it affects me, they have no idea that I have it or how serious it is.
Likewise with my glasses. I have them but people cannot tell how strong my prescription is or that they only allow me to "see" the very little I can and that they don't correct my visual difficulties, that nothing will. I embrace all these parts of me and encourage those who do not to do so and for others with disabilities to embrace their own uniqueness.
Demystifying Disability is a friendly but firm nudge in the right direction for people who think the world is accepting of people with disabilities.
It will challenge your perception of disability whether you have a disability or not, and I hope it will go a long way in producing more real change in society.
I think, and hope, it is the kind of book that will let people know that they shouldn't judge people based on what they "think" a person with a certain disability will look, or move, like.
I sincerely wish I could have had access to this book when I was growing up, as I think it will have gone a long way in shaping people's attitudes.
The message this book gives is that all of us with disabilities should love ourselves as we are and that everyone can learn something, no matter how much they think they know.
Because we can all keep learning.
Thanks to Emily Ladau for my ARC in exchange for an honest and voluntary review.
5 stars.
I have Cerebral Palsy, Hydrocephalus and four visual impairments and have so many experiences of different treatment from different people throughout my life.
I have experienced both ignorance and acceptance from people and life has been, and still is, a constant fight for inclusion.
I know so many people with disabilities will identify with me on this.
15% of the world's population has some type of disability.
I don't need disability to be demystified for me as I live with my disabilities every day but this is exactly the type of book that I know could help many people who need to know more about the world of disability and what those of us with disabilities are constantly up against.
Demystifying Disability will be good for those who think they "know it all" as they live with, or know, people with a disability. I believe everyone can learn more.
Like Emily Ladau, I am a wheelchair user and I identified with her experiences. I also learnt about her disability.
Another part of this book that I loved was her discussion of visible versus invisible disabilities, since I have both. My glasses and wheelchair are a marker of my visual disabilities, as are my scars from my shunt surgeries for hydrocephalus.
However, unless I let people know I have hydrocephalus, let them know what it is and how it affects me, they have no idea that I have it or how serious it is.
Likewise with my glasses. I have them but people cannot tell how strong my prescription is or that they only allow me to "see" the very little I can and that they don't correct my visual difficulties, that nothing will. I embrace all these parts of me and encourage those who do not to do so and for others with disabilities to embrace their own uniqueness.
Demystifying Disability is a friendly but firm nudge in the right direction for people who think the world is accepting of people with disabilities.
It will challenge your perception of disability whether you have a disability or not, and I hope it will go a long way in producing more real change in society.
I think, and hope, it is the kind of book that will let people know that they shouldn't judge people based on what they "think" a person with a certain disability will look, or move, like.
I sincerely wish I could have had access to this book when I was growing up, as I think it will have gone a long way in shaping people's attitudes.
The message this book gives is that all of us with disabilities should love ourselves as we are and that everyone can learn something, no matter how much they think they know.
Because we can all keep learning.
Thanks to Emily Ladau for my ARC in exchange for an honest and voluntary review.
5 stars.
June 3, 2021
Thanks to Ten Speed Press and NetGalley for the e-ARC!
This was a nice overview about disability for a general audience. I think it could work well for teens, but many adults would benefit from reading it as well.
This book is most effective when discussing topics like disability etiquette, how to talk about disability, recognizing and addressing ableism, and portrayals of disability in the media. Here, Ladau is able to pull in her own anecdotes and those of many other disabled activists, and her strong convictions enable her to carve her own space among other basic overviews of disability. Ladau effectively acknowledges that she cannot speak for all disabled people, clarifying her specific lens as a physically disabled, straight, white, Jewish, cisgender woman. She includes quotes from many BIPOC & queer disabled people, as well as people with different types of disabilities from her own, to help emphasize the variety of viewpoints and lived experiences that exist within the disabled community. She is clear that while she can give broad recommendations for how to speak and think about disability, each disabled person will have their own opinions, and can clarify their own preferences about terminology, boundaries, etc.
I found chapter 3 (“An (Incomplete) Overview of Disability History�) to be the least engaging. The whole chapter came across like she just felt obligated to include the subject. In an attempt to be approachable, Ladau starts by asking the reader not to abandon the book and promising that it won’t be boring. This is a pretty odd and ineffective way to introduce a topic. Then, her quite brief summary of U.S. disability history moved through events so quickly that I couldn’t see it being particularly useful to someone with no background information. It felt like the same care and effort was not put into this chapter, and it became unclear why it was even included.
This was a nice overview about disability for a general audience. I think it could work well for teens, but many adults would benefit from reading it as well.
This book is most effective when discussing topics like disability etiquette, how to talk about disability, recognizing and addressing ableism, and portrayals of disability in the media. Here, Ladau is able to pull in her own anecdotes and those of many other disabled activists, and her strong convictions enable her to carve her own space among other basic overviews of disability. Ladau effectively acknowledges that she cannot speak for all disabled people, clarifying her specific lens as a physically disabled, straight, white, Jewish, cisgender woman. She includes quotes from many BIPOC & queer disabled people, as well as people with different types of disabilities from her own, to help emphasize the variety of viewpoints and lived experiences that exist within the disabled community. She is clear that while she can give broad recommendations for how to speak and think about disability, each disabled person will have their own opinions, and can clarify their own preferences about terminology, boundaries, etc.
I found chapter 3 (“An (Incomplete) Overview of Disability History�) to be the least engaging. The whole chapter came across like she just felt obligated to include the subject. In an attempt to be approachable, Ladau starts by asking the reader not to abandon the book and promising that it won’t be boring. This is a pretty odd and ineffective way to introduce a topic. Then, her quite brief summary of U.S. disability history moved through events so quickly that I couldn’t see it being particularly useful to someone with no background information. It felt like the same care and effort was not put into this chapter, and it became unclear why it was even included.
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