Category: Non-Fiction Book Reviews

“Lost In a Desert World” Review

Posted on by Jen

“Lost in a Desert World: An Autobiography” by Roland Johnson, as told to Karl Williams

Roland Johnson’s autobiography is the triumphant story of a man who rose above an intellectual disability and devastating abuse to become a prominent leader in the self-advocacy movement.

As a child, Roland was sent away to live at the infamous Pennhurst State School in Pennsylvania, where he was sexually assaulted and forced to do unpaid manual labor. When he finally got out, he discovered the “real world” had no place for people like him — people who weren’t considered normal or valuable by societal standards.

Through a hospital counseling program, Roland ultimately began to find his voice. He discovered an ability to speak his truth and to fight for other people with disabilities. He would become president of Speaking for Ourselves and bring wide-scale awareness to the struggles faced by people with disabilities, as well as the unique gifts those same people have to offer.

Review

I think this is a really important book to read – it’s not often stories are told by people with intellectual disabilities themselves in their own words. This book was created from a series of audio interviews Karl Williams conducted with Roland Johnson about his life. Roland had wanted to tell his story and Karl helped him do it. The audio was then transcribed and the book written. Karl notes in the Forward of the book that he took care to not change any of Roland’s words other than to add notes clarify a couple things or indicate who someone was. It’s all Roland’s words as he tells his own story. I believe it worked out well – though I did end up confused in a couple places but I think that’s down to not having the same context as he was telling it. Also since it’s from Roland’s point of view it’s the truth as he knows it regardless of additional details that may not be included.

After the sections of the book that are Roland’s autobiography there are also a collection of speeches and interviews Roland gave during his lifetime. Also included were some memorial items that were published after his death. I think the book was well done in that regard and gives a good detailing about who Roland was. As with any posthumously published work it will never be known for sure how much Roland would have liked the way it was presented or ultimately told. However I do believe Karl Williams tried to be faithful to his friend’s life story.

It’s clear that Roland was someone who wanted better things for everyone – especially those currently stuck in institutions that needed to be released. He was often reminding people of that situation and also talked a lot about “who is in control?” if disabled people aren’t in control of their own lives something is wrong. He wanted disabled people to be able to take control of their one lives and live on their terms, no one else’s.

Note on the language: Roland does use the R-Word throughout the book but at the time he was telling his story that was the only word used for people with intellectual disabilities. He does start talking in the last section of the book about how he wished there was another word to describe his disability and not having to use that word anymore. There’s also some mentioning of low functioning/high functioning that don’t quite work in today’s language preferences. All that said it wouldn’t have made sense to change the language as it wouldn’t have been Roland’s words in the end. He was using the only language he had at the time.

Roland is also very blunt about the abuses he suffered at Pennhurst – it’s not describe graphically but still very clear what happened there.

Book Details

The cover of Lost in a Desert World is taken up by a black and white photograph of Roland wearing a suite standing on the grounds of Pennhurst. The picture is framed with pale brown on the top and bottom where the title and author information are written

Author’s Wikipedia Page
Roland Johnson (1945 – 1994)
Publisher / Date
Speaking for Ourselves, June 1999
Genre
Autobiography
Page Count
131
Completion Date
July 1, 2025

“Hijab Butch Blues” Review

Posted on by Jen

“Hijab Butch Blues” by Lamya H

When fourteen-year-old Lamya H realizes she has a crush on her teacher—her female teacher—she covers up her attraction, an attraction she can’t yet name, by playing up her roles as overachiever and class clown. Born in South Asia, she moved to the Middle East at a young age and has spent years feeling out of place, like her own desires and dreams don’t matter, and it’s easier to hide in plain sight. To disappear. But one day in Quran class, she reads a passage about Maryam that changes everything: When Maryam learned that she was pregnant, she insisted no man had touched her. Could Maryam, uninterested in men, be . . . like Lamya?

From that moment on, Lamya makes sense of her struggles and triumphs by comparing her experiences with some of the most famous stories in the Quran. She juxtaposes her coming out with Musa liberating his people from the pharoah; asks if Allah, who is neither male nor female, might instead be nonbinary; and, drawing on the faith and hope Nuh needed to construct his ark, begins to build a life of her own—ultimately finding that the answer to her lifelong quest for community and belonging lies in owning her identity as a queer, devout Muslim immigrant.

Review

I really enjoyed reading this memoir. I think the way Lamya uses stories from the Quran to make sense of her own story was interesting. I feel like I learned things from both her explanations of the stories in the Quran and her own life. I felt reading the memoir made me curious to hear other Muslim stories and experiences. I wish the author hadn’t had to write this anonymously but I understand why it had to be. Being anonymous actually gave the author more freedom to tell her own story and be unapologetically queer and Muslim.

In the version of the ebook I read there is an edited transcript of selected portions of an interview between Lamya H and Roxane Gay for the Audacious Book Club from March 30, 2023. I highly recommend reading that interview after reading the memoir as it provides some additional context and explanations.

Book Details

The background of the cover has verious streaks of color - blue, orange red, green and darker green from top to bottom in broad strokes. Over those colors is the profile of a woman in a Hijab turned towards the left with only a small part of her face visible. The title is written near the top with the authors name at the bottom.

Author’s Website
Lamya H
Publisher / Date
The Dial Press, February 2023
Genre
Memoir
Page Count
284
Completion Date
June 17, 2025

“NeuroTribes” Review

Posted on by Jen

“NeuroTribes: The Legacy of Autism and the Future of Neurodiversity”
by Steve Silberman

What is autism? A lifelong disability, or a naturally occurring form of cognitive difference akin to certain forms of genius? In truth, it is all of these things and more—and the future of our society depends on our understanding it. WIRED reporter Steve Silberman unearths the secret history of autism, long suppressed by the same clinicians who became famous for discovering it, and finds surprising answers to the crucial question of why the number of diagnoses has soared in recent years.

Going back to the earliest days of autism research and chronicling the brave and lonely journey of autistic people and their families through the decades, Silberman provides long-sought solutions to the autism puzzle, while mapping out a path for our society toward a more humane world in which people with learning differences and those who love them have access to the resources they need to live happier, healthier, more secure, and more meaningful lives.

Along the way, he reveals the untold story of Hans Asperger, the father of Asperger’s syndrome, whose “little professors” were targeted by the darkest social-engineering experiment in human history; exposes the covert campaign by child psychiatrist Leo Kanner to suppress knowledge of the autism spectrum for fifty years; and casts light on the growing movement of “neurodiversity” activists seeking respect, support, technological innovation, accommodations in the workplace and in education, and the right to self-determination for those with cognitive differences.

Review

This is a really good book, and wish I’d read it sooner. I really liked the way the author went through the history of Autism research from its initial diagnosis in wartime Austria, all the way to the current autism rights movement. There was a lot of interesting and important information. I want to note here that there are two versions of this book. In the original version, published in 2015, Silberman discusses Hans Asperger’s history of working with individuals who had a seemingly milder version of autism without being able to confirm whether or not Asperger was a Nazi and if Asperger agreed with their eugenic views. This is the version I read which was the only one available as an ebook from Kobo. There is a reprint edition from 2016 that does address this and is the one available on Amazon. Silberman also discussed the issue with Maxfield Sparrow at the blog Thinking Person’s Guide to Autism: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies. At some point I will buy that version and read it as well.

I like the way the book was broken up into different chapters with different focuses though it did require some repetition and referring back to different points in time. The chapter on Science Fiction and the rise of Science Fiction fandom was particularly interesting to me. Silberman spent a lot of time discussing how fans are often Autistic individuals seeking to belong and that being in fandom supports that need. Other groups around technologies had similar situations such as Ham Radio operators. The creation of the movie “Rain Man” is discussed along with the various individuals who Raymond is based on. While I do have my own opinion about that movie, after reading this book I understand that it did create an opportunity for people to see an autistic individual and be more understanding in various situations.

Throughout the book I felt as though Silberman did a good job explaining how parents were desperate for answers. In most case the parents were trying to find ways to help their children. The biggest problem was lack of information and what information there was primarily negative. Often though parents did keep trying to find better solutions and for many there was a shift towards supports and accommodations.

In the later chapters Silberman talks about the ways Autistic adults started taking control of their own lives and the narrative around their needs. The rise of various groups around the Autistic community and the eventual creation of the Autistic Self Advocacy Network. The key was that these groups were run by Autistic individuals themselves instead of only parent groups. The effort by Autistic adults to be seen and heard is important as they’re primally focused on ensuring they receive the supports they need. Often the idea of supporting individuals is overlooked in the push for a cure for Autism.

Overall, I do believe the book works for what the author was trying to do – present the history and potential future of the Autistic community. What is needed is more respect and understanding and acceptance for all Autistic individuals, no matter their support needs. While Silberman does try speak to the fact that other disabilities are included in the neurodiversity movement the focus was mostly on Autism. To that point I think the title is a little misleading and probably shouldn’t have used the word tribe in it for various reasons. The history is important to know especially in today’s political climate. With people like RFK Jr and Dr. Oz around we’re on the verge of taking huge steps backwards because they only see the negatives. And if we’re not careful they will convince people that is the only truth.

Eric Michael Garcia’s “We’re Not Broken: Changing the Autism Conversation” (which I reviewed previously) works as a good follow up to fill in some gaps such as how gender and race influence both diagnoses and acceptance. It’s also written more directly from the perspective of Autistic individuals, in part because Garcia is himself autistic, while Silberman is not. Garcia referenced “NeuroTribes” multiple times throughout his book and has said that he couldn’t have written his book without Silberman’s book existing. Naturally, both spoke with some of the same individuals – one such family were the Rosas – Leo Rosa is autistic and his mother, Shannon, currently edits the blog Thinking Persons’s Guide to Autism.

Steve Silberman passed away August 29, 2024 and many in the community morned his passing. You may be interested in reading this conversation at Thinking Person’s Guide to Autism: Remembering Steve Silberman: TPGA Editor Shannon Rosa on the Noncompliant Podcast.

Book Details

The cover of the book is white with the title in red near the top and the authors name at the bottom. There is a cluster of plants near the bottom center of the page with butterflies and few birds within the plants.

Author’s Website
Steve Silberman (Wikipedia)
Publisher / Date
Harvest Publications, August 2021
Genre
Essay Collection
Page Count
400
Completion Date
April 28, 2025

“We’re Not Broken” Review

Posted on by Jen

“We’re Not Broken: Changing the Autism Conversation” by Eric Garcia

Garcia began writing about autism because he was frustrated by the media’s coverage of it; the myths that the disorder is caused by vaccines, the narrow portrayals of autistic people as white men working in Silicon Valley. His own life as an autistic person didn’t look anything like that. He is Latino, a graduate of the University of North Carolina, and works as a journalist covering politics in Washington D.C. Garcia realized he needed to put into writing what so many autistic people have been saying for years; autism is a part of their identity, they don’t need to be fixed.

In We’re Not Broken, Garcia uses his own life as a springboard to discuss the social and policy gaps that exist in supporting those on the spectrum. From education to healthcare, he explores how autistic people wrestle with systems that were not built with them in mind. At the same time, he shares the experiences of all types of autistic people, from those with higher support needs, to autistic people of color, to those in the LGBTQ community. In doing so, Garcia gives his community a platform to articulate their own needs, rather than having others speak for them, which has been the standard for far too long.

Review

I originally read this back in 2022 sometime after it came out in 2021 and wanted to re-read it now both to do a review for it and also because of the current political rhetoric around autism. I really like the way Eric Garcia took the time to explain why and how he wanted to write this book. There was a good variety of people represented in this book from across the spectrum of support needs as well as gender and race.

Garcia also makes a point of saying how people can have different needs but often assumptions are made about who needs what supports to be successful. He emphasizes that Autistic individuals who succeed don’t “overcome” their autism but rather succeed because they are given the proper supports throughout their lives. There was a lot of discussion about being willing to seek out support along with the fear that needing support means one is not capable of being out in the world which can hinder actually getting support.

The book is divided into several categories including those for work, education, housing, gender, and race and in each one Garcia both tells his own experiences and also shares the experiences of others. Again, each section does a good job of showing a range of experiences. I particularly appreciated the first chapter which outlined a lot of the history of autism and how it has been viewed over the years. It’s a bit weird reading this book now during the second Trump presidency when it was written during the first and some policy decisions were made at that time.

I also appreciated the gender and race sections of the book, which illustrated why there is seemingly such an increase in diagnosis over the years. Girls, non-binary, and trans individuals are often overlooked as many traits are assumed to be more about gender (like being shy) than anything else. Also, with regard to race, there was a point in time when it was assumed only white boys were autistic (mostly due to the way studies were conducted), while Black and Brown children were given different diagnoses, such as Oppositional Defiant Disorder.

Overall, I think Garcia does a great job highlighting the various issues that autistic people face and the ways that assumptions have been made across the spectrum with regard to ability and how best to support autistic people. There is some good discussion about the conflicts that can exist between parent advocates and self-advocates. Nearly always, parents want to do best by their children, but sometimes the idea of finding a cure can cause more harm than good. Often, the push for a cure comes at the expense of actually providing care and support to the children and adults that currently exist. And this is true for a lot of different disabilities where better supports would be appreciated more than finding a cure.

Book Details

The book cover is a sold white background with the title written one word per line down the center. The letters of the title are colored in different colored sections: orange, pink, purple, green, blu and red. The subtitle is under the main title in solid black and then the authors name is at the bottom with the same color patterns.

Author’s Website
Eric Garcia
Publisher / Date
Harvest Publications, August 2021
Genre
Essay Collection
Page Count
304
Completion Date
April 21, 2025

“Never Say You Can’t Survive” Review

Posted on by Jen

“Never Say You Can’t Survive: How to Get Through Hard Times by Making Up Stories” by Charlie Jane Anders

The world is on fire.

So tell your story.

Things are scary right now. We’re all being swept along by a tidal wave of history, and it’s easy to feel helpless. But we’re not helpless: we have minds, and imaginations, and the ability to visualize other worlds and valiant struggles. And writing can be an act of resistance that reminds us that other futures and other ways of living are possible.

Full of memoir, personal anecdote, and insight about how to flourish during the present emergency, Never Say You Can’t Survive is the perfect manual for creativity in unprecedented times.

Review

I really enjoyed reading this. There was a lot of great writing advice in this book, with a lot of details and explanations. I also liked that the author included her own experiences in the book to help explain things. It’s not quite a memoir, but it’s also more than simply a guidebook on how to write good stories. The author also did a good job talking about why it can be important to write stories during hard times, as stories can get us through those times. While I’m not a fiction writer (yet), I did enjoy reading all of the advice, and I think it will be helpful in figuring out what I do want to work on writing.

Book Details

The book cover has the background of a black brick wall with the title of the book written in transparent hot pink text down the left side of the cover one word at a time. The subtitle and authors name are in the center right of the cover in white text.

Author’s Website
Charlie Jane Anders
Publisher / Date
Tor.com, August 2021
Genre
Essay Collection, Guidebook
Page Count
288
Completion Date
March 22, 2025

“Disposable” Review

Posted on by Jen

“Disposable: America’s Contempt for the Underclass” by Sarah Jones

In the tradition of Matthew Desmond’s Evicted and Andrea Elliot’s Invisible Child, Disposable is a poignant exploration of America’s underclass, left vulnerable by systemic racism and capitalism. Here, Sarah Jones delves into the lives of the essential workers, seniors, and people with disabilities who were disproportionately affected by COVID-19—not due to their age or profession, but because of the systemic inequality and poverty that left them exposed.

The pandemic served as a stark revelation of the true state of America, a country where the dream of prosperity is a distant mirage for millions. Jones argues that the pandemic didn’t create these dynamics, but rather revealed the existing social mobility issues and wealth gap that have long plagued the nation. Behind the staggering death toll are stories of lives lost, injustices suffered, and institutions that failed to protect their people.

Jones brings these stories to the forefront, transforming the abstract concept of the pandemic into a deeply personal and political phenomenon. She argues that America has abandoned a sacrificial underclass of millions but insists that another future is possible. By addressing the pervasive issues of racial justice and public policy, Jones calls for a future where no one is seen as disposable again.

Review

This was a really good look at the various issues around COVID disparities and the vastly different outcomes because of race, disability and/or poverty. I felt like the author did a great job using various peoples’ stories to showcase all the different situations and outcomes. I also liked that the author discussed the issues with congregate settings and how people in those settings were basically doomed by COVID. There was a good focus on all kinds of congregate settings from people with Intellectual Disabilities in group homes, to elderly individuals in nursing homes to individuals in prisons and jails. There was also a good discussion about the way various jobs didn’t allow for any precautions to be taken and people were forced to work while sick or risk being fired because there’s no paid sick time for many.

There’s also the emphasis on how if you don’t have money or status and can’t work you’re not seeing as worthy. The rich and powerful only care about money and staying in power. The way things opened back up quickly just highlighted how much people cared more about the economy than people. I also liked the fact that the author didn’t shy away from saying that COVID is still a major problem and that people are still getting sick and dying from it. We never should have tried to return to normal because normal doesn’t exist anymore.

Book Details

The cover of Disposable has a black and white image of an empty country road with light posts and trees on the side and wires going across. There is an American flag floating in the air upside down and partially folded over under a dark cloudy sky. The title is at the top with the authors name at the bottom.

Author’s Website
Sarah Jones (Blue Sky)
Publisher / Date
Avid Reader Press / Simon & Schuster, February 2025
Genre
Essay Collection, Disability, COVID
Page Count
295
Completion Date
March 16, 2025