A book designed to help teach people about disabilities, that recognises that there are gaps in information about disabilities among nondisabled AND disabled people? Yep, you know that Demystifying Disability went straight on my wish list for GeekDis, and I was very happy when I got an approval for it on NetGalley.
This book was provided for free by NetGalley and the publishers in exchange for an honest review. Many thanks to NetGalley and Ten Speed Press for the opportunity to read this book.
As a member of the disability community who has chronic illnesses that are invisible, I subsequently belong to a sub-group of the disability community who experience things differently to those who were paralysed in an accident or are full time wheelchair users, for example. There are many people in the disabled community, myself included, who view this as merely people having separate experiences. As the saying goes; the disabled community is not a monolith. What this means is that we’re not all the same, we’re not carved from granite or carbon copies of one another. Unfortunately, like in any community, instead of choosing to embrace and learn from our individual experiences, there are people who have a tendency to act as though their disability makes them superior.
I mention all this because from reading the synopsis of Demystifying Disability, I instantly recognised that this wasn’t going to be one of those books. “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” the synopsis explains, and I’m intrigued as to whether Emily Ladau is going to tackle the alternate views of the disability community, such as different opinions of what language people should use. This can become quite a heated debate, and I’m curious to see how she handles this in a respectful and educational way.
There’s also a section on disability stereotypes in media which is 100% on point for GeekDis, and a section on something that I have never really thought about, disability history, which as an individual and an academic made me go “huh…”. The fact that I have never once thought about it, questioned why I’ve not thought about it or noticed its absence worries me immensely. I’m looking forward to reading that section.
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. This is a book that is being published worldwide, and after reading so much about how the disabled community is filled with so much diversity etc. I got that “the world doesn’t exist outside America” again feeling. As I’m writing this, I’m wondering how many of the people interviewed for the book were actually from outside the US as most of the names I recognise are American.
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!
Over to you
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