Cover Image: Demystifying Disability

Demystifying Disability

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Member Reviews

I am disabled and constantly say "How are we expected to fill out all of this paperwork?" Sadly, this was not helpful. I had hoped for it to be a nice If this then that kind of book. In other words, this form looks like this. This is what you need to fill out. You will be able to find the information at this location. Not so. I got nothing from it.

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"Demystifying Disability: What to Know, What to Say, and How to Be an Ally" by Emily Ladau is a groundbreaking work that provides a comprehensive and accessible introduction to the world of disability rights. Ladau's expertise and passion for advocacy shine through in this meticulously researched and thoughtfully written book. It is an invaluable resource for anyone looking to deepen their understanding of disability, be a more effective ally, and contribute to a more inclusive society.

What sets this book apart is Ladau's ability to tackle complex topics with clarity and empathy. She provides practical advice on how to approach conversations about disability, dispelling common myths and misconceptions along the way. Ladau's personal anecdotes and real-world examples add depth to the narrative, allowing readers to connect with the material on a personal level.

The book's structure is well-organized, allowing for a seamless progression from foundational concepts to more nuanced discussions. Ladau covers a wide range of topics, including language use, accessibility, and the importance of intersectionality in disability advocacy. Each chapter is supported by research and extensive references, providing a robust foundation for readers to build their knowledge and understanding.

"Demystifying Disability" is not only an educational resource, but also a call to action. Ladau empowers readers to become effective allies and advocates for disability rights. She provides tangible steps and practical advice for creating more inclusive spaces, both personally and within society at large. This book is a testament to Ladau's dedication to fostering a more inclusive and equitable world for people of all abilities.

I was provided an advanced copy of this book by NetGalley in exchange for an honest review.

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Thank you to Netgalley and the publisher for giving me free access to the advanced digital copy of this book.

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I really enthuse this look into the varying world of life with a disability.

I’ve got a couple of mental and physical disabilities myself and I’ve often struggled with whether or not I’m “disabled enough” for the label, but this book helped me see that I am enough, but that it doesn’t have to change who I am.

Well written and informative, I would definitely recommend this book to someone wanting to learn more about disability.

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As a person who is disabled, I really enjoyed reading this book. There a ton of topics covered in this book and the information is presented wonderfully. Even though I am part of the disabled community I still learned a few things I didn't already know from this book proving we all have more to learn.

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This book about disability and how to be an ally to people with disabilities was very informative for anyone who works with or comes in contact with people with disabilities. So basically it is for everyone! I appreciate the “own voice” perspective of the author.

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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 1.5 stars off of my what should have been a 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 a full five 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.

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This book was really insightful and made me think. I won't give it a rating on Goodreads, but for NetGalley feedback I'll give it three stars. I was expecting more of a deep dive into disability politics and advocacy, but I think that's my fault for going into it without reading the summary (as I usually do). It was still a good read and I enjoyed learning more about the dos and don'ts of interacting with folks who have a disability. But, I would definitely say this read is more "basic" and meant for people who don't have any prior experience with disability as Ladau gives you a very introductory level look into disability.

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This is an excellent resource for all things disability related when it comes to what should be said and done. As a member of the community, I want to thank the author for her tireless work in educating and advocating for our rights. I hope this book is widely available in libraries.

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This is an incredibly accessible and easily understood first-person account of why, and how, to be an advocate for members of the disability community. Ms. Ladau, the author, is well-spoken and passionate about her subject, with the clarity that comes from being a member of the community for which she is advocating. She speaks directly to her audience in a way that is appropriate for middle school and up, while never speaking down to her audience - a beautiful example of the type of advocacy she is hoping to inspire in others.

In addition to detailed whys and how’s, as well as summary lists at the end of most chapters, this book includes a comprehensive list of resources, along with an index of terms. These resources make this volume an ideal starting point for those interested in helping with disabilities rights in general as well as more specific disabilities.

This review has been provided in return for an advance copy of this book.

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This was a beautiful book. As a special educator, I have background information and experience with disabled people. But as a (mostly) abled bodied person, this book brought lived experiences that I wasn’t aware of to light. It also had me confronting my own ableism and assessing my self identity. Overall, I would recommend this to everyone!

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Demystifying Disability

Good book. Good information. This book explains what disability is, what it is not, and how to treat people who are disabled. More people could/should read this book and put its suggestions into practice.

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Emily Ladau did an excellent job of making an accessible guide on disability. While I was already familiar with some of the content she presented, this is an invaluable resource to people with varying levels of experience with this topic. Emily's experiences and the experiences of others was very impressionable throughout the book for me. I loved reading about how she was on Sesame Street as a child when she discussed media depictions of people with disabilities, which is improving but still lacking. Thank you NetGalley for the copy of this book! I will definitely recommend this book to others. This is a book I wish I had read sooner, but I am glad to have read it now and to have the chance to return to this guide in the future. This book is a must read for anyone and everyone!

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I requested this book because I had a new job working, in part, with disabled people and disability issues. I loved this book- it’s engaging and a good reference for folks to be effective allies to people with disabilities, or people with a different disability than us. I’ll be going back to this book again and again, and ordered a print copy to have on hand.

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As both a mother of a developmentally disabled child and as a clinician who works only with this group, I found this book to be a new and helpful tool for all of us. It is helpful to me when advocating for my son but also as a clinician who cares about the population that I serve. It would be a great resource to the staff and families who care for this group as well. Reading through the history of the treatment and access to basics like education was interesting. It is incredible how far things have come, albeit, slowly. I have worked in a facility (similar to Willowbrook, but not with the terrible conditions) and have seen the pros and cons of this institutional approach. Our facility has also closed and seeing the lives that the former inpatients, now community residents, are living has been a blessing.
I think my favorite quote from this book and takeaway message is: "Disabled lives are worth living." This couldn't be more obvious of a point and yet more necessary of a point. Sadly, many people consider disabilities as a reason to not give the same care or consideration or respect to those who are affected by the disabilities, as they would give to an abled person. I have come across this many times in my work. In caring for some of the most profoundly intellectually and developmentally disabled folks, I have seen other healthcare providers fail to act as though these are people, often claiming "poor quality of life" (their presumption because the patients are different from themselves) as a reason to not give the same urgent care. And yet, I can say that there has never been one person with a disability that I have interacted with who was not worthy of love, respect, and dignity. I think this is a message that we all need to keep close when saying, thinking, or doing something that might be disrespectful to this community. Then apply the same to all communities, even those different from ourselves. As with most people, we find some common ground in which to build a relationship and that is no different here.
Thank you for the eARC and good luck to the author on her writing and her advocacy.
Highly recommend. I will have this as a recommendation for all the caregivers that I interact with when seeing folks with developmental disabilities.


#DemystifyingDisability #NetGalley #TenSpeedPress

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I give this book a 10/10 - the content shared here is so important and the book presented everything with such clarity and directness. I walked away from this read a more educated and better ally. HIGHLY encourage this read to everyone - the takeaways and education here is practical, useful, and necessary.

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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!

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Sometimes, people want to be more sensitive to disabilities, but they simply do not know how to brooch the subject. Ladau writes an incredible book to literally demystify both physical and mental disabilities. Ladau writes in a manner in which you can sometimes chuckle at serious situations and yet there were times when I even cringed because I realized I may have done something on the "do not do" list. Books like this are very important and making us look inward and better ourselves.

As a librarian, I also appreciated the appendix in which various nationwide resources that are available to people and their caretakers for the various ability levels of people.

***Thank you NetGalley for providing me with access to this e-preview. This review is based on an ARC.***

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Thank you to the publishers and NetGalley for an eARC in exchange for an honest review! Receiving this book was like Christmas coming early. I absolutely adored every page. It’s easily made its way onto my list of favorite books in 2021 and now I want the entire world to read it too!

Emily Ladau has created an appealing, easy to understand guide to disability. In six laser sharp chapters, she outlines disability etiquette, defines major terms, provides a quick overview of disability history, and describes the lows and highs of disability representation in the media. Challenging issues like ableism are fully fleshed out with care and subtle humor.

I can’t wait to get my finished copy so I can highlight every page. Then I want to mail it to my entire family, my friends, and everyone I pass on the street. Please add this book to your wishlists ASAP! I think process this information will genuinely fill a gap in your life and make you a better human being. Period.

Even though I’m disabled, my experience is not one-size-fits-all and this book has reminded me that I have a lot of work to do. Ladou’s work has inspired and challenged me.

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Had a great and very informative read of demystifying disability. Emily Ladau did an amazing job of helping a general audience to understand the disabled community better, and offered great perspective that will allow us all to become more connected.

See my full video review here: https://youtu.be/WSAGBbCEUe0

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