“Lost In a Desert World” Review

“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

“The Calculating Stars” Review

“The Calculating Stars” (Lady Astronaut No. 1) by Mary Robinette Kowal

On a cold spring night in 1952, a huge meteorite fell to earth and obliterated much of the east coast of the United States, including Washington D.C. The ensuing climate cataclysm will soon render the earth inhospitable for humanity, as the last such meteorite did for the dinosaurs. This looming threat calls for a radically accelerated effort to colonize space, and requires a much larger share of humanity to take part in the process.

Elma York’s experience as a WASP pilot and mathematician earns her a place in the International Aerospace Coalition’s attempts to put man on the moon, as a calculator. But with so many skilled and experienced women pilots and scientists involved with the program, it doesn’t take long before Elma begins to wonder why they can’t go into space, too.

Elma’s drive to become the first Lady Astronaut is so strong that even the most dearly held conventions of society may not stand a chance against her.

Review

I’m re-reading the first three books in this series so I can read newest book and so I can put the reviews on my site. I do have something of an old review on my Instagram from when I originally read the first book and started the second, but I’ve redone the review for the first book here and there will be reviews for the others.

I enjoyed reading this again, since it’s been a couple years I’d forgotten some details but many of my thoughts have stayed the same. I really liked the world building that went into this series and the way things were discussed among the characters. The author clearly did their research and had help creating this series as detailed at the end of the book. There is also a section at the end of the book that details some historical items that were used to help build the idea that this all could be possible. I do admit to wishing there had been more time spent on the world building and showing how things were developing throughout the country. The space program is important but perhaps a little more could have been said about the conditions on Earth in this book. Still I think it worked out well and because of the timing a lot of time did have to be spent dealing with the sexism and racism that existed. Different reasons for the same progress that needed to be made.

I like the main characters and I thought they were well done, but I felt like some of the other characters could have been developed more beyond their role as someone for Elma to learn from. In that regard I feel like the sexism was perhaps better handled than the racism. Woman didn’t have a lot of rights in the 50s and were treated as if they were fragile creatures who couldn’t possibly handle being in space. Elma was in the Women Air force Service Pilots program during World War 2 and is a mathematician so she gets to join the International Aerospace Coalition that forms after the strike but there are still many roadblocks in place.

On the racism aspect I think it’s decently handled from a white person’s point of view at least, though I would imagine there might be places where some Black readers might wish things were handled differently. As it stands the author handles things by having the main character constantly realizing what she’s missing. Though that might be intentional on the authors part with Elma being well intended but oblivious to wider issues that people are facing as she’s dealing with her own stuff. Elma and her husband are Jewish and have dealt with their own share of discrimination and the events of the second World War as well. I did like that Martin Luther King Jr. and the beginnings of the civil rights movements are also mentioned throughout the book, as the start of changes for Black people going into space. There’s an intent to deal with the racism alongside the sexism that works out well enough as the series goes on.

It does also have to be pointed out that because it’s the 50s its also pre all the advances made by disabled people in getting their rights in the United States as well. Many people with intellectual and developmental disabilities were locked away in institutions in the 50s. People with some physical disabilities faired somewhat better – the main character’s brother had polio as a child and uses crutches – but was well educated and had opportunities given to him as Elma had. There are a few other mentions of disability and mental health issues throughout the series (Elma also has an anxiety disorder) but not to a great detail. But a lot of that can be put down to how it was in the 50s. Disabled people were ignored unless they were already actively in the community working along side others and that was rare at the time.

While it’s not the story the author wanted to focus on there are a lot of obvious changes to where the disability rights movement will come from given who likely died when the meteorite struck. That said, other people will have lived and would have made the same choices they already were making in getting out of institutions and fighting to be seen and heard.

Warnings and additional reviews can be found on the StoryGraph page for “The Calculating Stars”.

Book Details

The Calculating Stars book cover. The cover is gradient with dark blue at the top to pale blue at the bottom with circle patters throughout he cover. At the bottom are black images of several women walking forwards, some have hats others doe nought most are in dresses or skirts. One might be riding a bicycle. The author's name is at the top with the title in the center.

Author’s Website
Mary Robinette Kowal
Publisher / Date
Tor Books, July 2018
Genre
Science Fiction, Alternate History
Page Count
432
Completion Date
June 30, 2025

“An Unkindness of Ghosts” Review

“An Unkindness of Ghosts” by Rivers Solomon

Aster has little to offer folks in the way of rebuttal when they call her ogre and freak. She’s used to the names; she only wishes there was more truth to them. If she were truly a monster, she’d be powerful enough to tear down the walls around her until nothing remains of her world.

Aster lives in the lowdeck slums of the HSS Matilda, a space vessel organized much like the antebellum South. For generations, Matilda has ferried the last of humanity to a mythical Promised Land. On its way, the ship’s leaders have imposed harsh moral restrictions and deep indignities on dark-skinned sharecroppers like Aster. Embroiled in a grudge with a brutal overseer, Aster learns there may be a way to improve her lot–if she’s willing to sow the seeds of civil war.

Review

I’ve been meaning to re-read all of Rivers’ earlier books so that I could review them for my blog. This is Rivers’ first and I really enjoyed it. It’s not entirely clear when the ship left Earth or how it ended up the way it did. But it’s also clear that a lot of information has been lost due to time and how bad things have gotten on the ship. The ship is set up so that those who live on the upper decks are white, rich and living comfortably; while everyone in the lower decks who are darker skinned suffers in poverty and near freezing temperatures. It’s a dark and sad story but it does a good job exploring various themes relating to how things were in times of slavery. I also felt like the book did a great job exploring the themes of neurodivergence and gender identity. It may be set in the future but it’s a reminder of how little things change relating to how badly people treat each other. It’s also a story about how people will do whatever it takes to live or die on their own terms.

Along side all this Aster has been attempting to find out more about her mother who she originally believed died at childbirth. Through journals she discovers there is a lot more to the story. I liked the way Aster kept trying to figure everything out despite everything that was happening. While I did feel like the ending chapters were a bit rushed and the ending abrupt, I have to admit it works for the way things played out.

Warnings and additional reviews can be found on the StoryGraph page for “An Unkindness of Ghosts”

Book Details

The cover is a pale field of stars with grays and light blues and in the stars is the face of a young person looking towards the left with their head slightly turned forward and eyes looking forwards too. The face takes up most of the book and the title is written over their forehead and the author's name at the bottom.

Author’s Website
Rivers Solomon
Publisher / Date
Akashic Books / October 2017
Genre
Science Fiction, Dystopian
Page Count
349
Completion Date
June 20, 2025

“Hijab Butch Blues” Review

“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

“Interstellar MegaChef” Review

“Interstellar MegaChef” (Flavour Hacker No. 1) by Lavanya Lakshminarayan

Stepping off a long-haul star freighter with one bag of clothes, her little flying robot Kili and the forged documents she used to flee Earth, Saraswati Kaveri is ready to take on the world. Primus, the oldest and most powerful colony in the United Human Cooperative, is the heart of all art and culture. Primian food is the highest and most sophisticated cuisine in the galaxy. And Interstellar MegaChef, now in its twenty-fifth year of broadcasting, is the showcase and standard of that cuisine. And this year—no matter what obstacles Primus throws in her way, whatever prejudices she encounters, however they sneer on her “Earthling” tastes and methods—Saraswati’s going to win it.

Review

This book was a bit complicated and I’m not entirely sold on any of the characters. It’s described in some places as satire so that explains why things seem to be exaggerated (while also realistic in some ways). That said it’s a fun book and many of the characters were interesting. It’s just that the main characters weren’t the most likable. I did like the fact that there was some character development towards the end but I felt like some realizations came a little too late. Food was obviously a big theme of the book and I really enjoyed all the ways it was described. The central conflict between the way Primian food has been developed and Saraswati’s food knowledge from Earth was well done. I also liked what the book had to say about racism and xenophobia. While the ending isn’t exactly a cliffhanger there were a few important plot lines left unresolved, however this is meant to be the first book in a series and I’m interested in seeing how things progress.

Additional reviews and warnings can be found on the StoryGraph page for “Interstellar MegaChef”

Book Details

The Cover of the book is a view of space that ranges from light purple at the top to black at the bottom. There is a large donut with pink frosting and sprinkles taking up most of the center of the cover. Also around the over are various pieces of sliced vegetables - mushrooms, carrot, zucchini, and leaves from herbs. The title is near the bottom of the book in yellow and red and below that is the authors name in yellow.

Author’s Website
Lavanya Lakshminarayan (BlueSky)
Publisher / Date
Rebellion, November 2024
Genre
Science Fiction
Page Count
415
Completion Date
May 25, 2025

My LTEs, Op-Ed, and Newsletter

I’ve had two Letters to the Editor and an Op-Ed published in Local Newspapers:

Letter: ‘We need to improve our healthcare systems and access to mental health’
Community Advocate May 19, 2025 (Scroll down to the bottom of the page to read the letter)
Opinion/Guest column: Kennedy, Trump not ‘helping disabled
Published in the Worcester Telegram & Gazette on May 4, 2025
Letter: ‘We are all in danger from the current administration’
Published in the Community Advocate April 13, 2025 (Scroll down to the bottom of the page to read the letter)

I also started a newsletter which is primarily a weekly list of disability related news:
Jen’s Newsletter Archive