“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
- 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