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

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. <br /><br />Oh, and she apparently has sex. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />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. <br /><br />"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."<br /><br />Indeed, many of us deal with it every single day. <br /><br />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.

<a href="https://imgbox.com/BuKKJnQI" target="_blank" rel="nofollow noopener"></a> <a href="https://imgbox.com/ZF9ymMir" target="_blank" rel="nofollow noopener"> <img src="https://i.gr-assets.com/images/S/compressed.photo.goodreads.com/hostedimages/1632945668i/31989639.jpg" alt="image host" width="400" height="400" class="gr-hostedUserImg" loading="lazy"> </a> <br><br>Hi everyone! GeekDis is happening again this year, and I'm giving away a copy of Demystifying Disability as a part of the event!<br><br>It's open internationally, and <a href="https://bit.ly/windemyst" rel="nofollow noopener">you can enter to win here!</a><br><br>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 <a href="https://geeking-by.net/geekdis/" rel="nofollow noopener">GeekDis here</a>!<br><br>Originally posted on <a href="https://geeking-by.net/review/demystifying-disability-by-emily-ladau-book-review/" rel="nofollow noopener">Just Geeking by</a>.<br><br>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.<br><br>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.<br><br>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.<br><br>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.<br><br>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:<br><br> “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.”<br><br>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.<br><br>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. <br><br>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.<br><br>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”.<br><br>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.<br><br>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!<br><br><br> <b>For more of my reviews please visit <a href="https://geeking-by.net/book-reviews/" rel="nofollow noopener">my blog</a>!</b>

clear, accessible, and compassionate, emily ladau's book is exactly the sort of resource i've been seeking to read <i>and</i> share with folks around me!

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. <br /><br />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. <br /><br />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. <br /><br />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 &amp; 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. <br /><br />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.

This 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!

In short, this is an invaluable resource and one I will return to for guidance. <br /><br />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 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:<br /><br />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...)<br /><br />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.<br /><br />(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. )<br /><br />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.<br /><br />That is all.

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.

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.

Emily, thank you! I learned so much about my own ableism. <br /><br />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.