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. Lost in a Desert World brings you into Roland's life through his own voice and both encourages and challenges you to connect to your own humanity as a means of connecting with the humanity present in all people. Roland Johnson was a man of great courage, vision, and determination. He had an alternate kind of intelligence - one not based on what we call intellect. In Roland Johnson's world, understanding - one person for another - is the way of the future, the only route to true freedom. CRITICAL PRAISE "Roland Johnson has an important story to tell. In writing this truth-telling autobiography, he becomes a powerful witness to the cost of segregation and the hope of community." - Joseph P. Shapiro, author of No Pity: People with Disabilities Forging a New Civil Rights Movement "Roland Johnson was a friend and a hero of mine. He was a great pioneer of the frontier of human being. Read his book." - Justin Dart, father of the ADA, Americans With Disabilities Act, and Chairperson of the President's Committee on Employment of People with Disabilities under President Bush "Roland Johnson was a good and true man whose friendship I cherished. He was a teacher to many of us, and now this book will carry his voice across the country." - Gunnar Dybwad, internationally respected advocate and past president of the International League of Societies for Persons with Mental Handicaps "Roland is a man who accepted you for who you were. He was a friend to everyone and wanted to help people live their dreams and have control over their lives. It was an honor to have him as my friend." - Tia Nelis, Chair of the Board of Self-Advocates Becoming Empowered (SABE) "It is rare, even in fiction let alone autobiography, when an author's words leap off the page through the ear to awaken the reader's heart. I never knew Roland Johnson. But thanks to Karl Williams, I am able to know Roland's playful spirit, his soul full of knowing, the truth of his experience. Bravo to both." - Lucy Gwin, Mouth Magazine "... Intimate and vivid portrayal ... Roland Johnson's autobiography ... breaks new ground regarding the authenticity with which it projects his voice ... Karl Williams' preservation of Roland's words, and Roland's voice, his unique manner of speaking intact, shines new light on the meaning of 'speaking for ourselves.' ... (A) work of pioneering authenticity ..." - Melissa Probst, AAMR Journal "Lost In a Desert World is so good and Roland's talking is so much like him, it felt like I was in the same room with him again ... Loved every minute of it ... It made me want to reach out and hug him ..." - Robert Perske, Author

In Menace to the Future, Jess Whatcott traces the link between US disability institutions and early twentieth-century eugenicist ideology, demonstrating how the legacy of those ideas continues to shape incarceration and detention today. Whatcott focuses on California, examining records from state institutions and reform organizations, newspapers, and state hospital museum exhibits. They reveal that state confinement, coercive treatment, care neglect, and forced sterilization were done out of the belief that the perceived unfitness of disabled, mad, and neurodivergent people was hereditary and thus posed a biological threat—a so-called menace to the future. Whatcott uncovers a history of disabled resistance to these institutions that predates disability rights movements, builds a genealogy of resistance, and tells a history of eugenics from below. Theorizing how what they call “carceral eugenics” informed state treatment of disabled, mad, and neurodivergent people a century ago, Whatcott shows not only how that same logic still exists in secure treatment facilities, state prisons, and immigration detention centers, but also why it must continue to be resisted.

Cover -- Title Page -- Copyright -- Contents -- List of Illustrations -- Acknowledgments -- Note on Terminology -- Introduction: Life, Labor, and Reproduction at the Intersections of Race, Gender, and Disability -- 1. The Pacific Plan: Race, Mental Defect, and Population Control in California's Pacific Colony -- 2. The Mexican Sex Menace: Labor, Reproduction, and Feeblemindedness -- 3. The Laboratory of Deficiency: Race, Knowledge, and the Reproductive Politics of Juvenile Delinquency -- 4. Riots, Refusals, and Other Defiant Acts: Resisting Confinement and Sterilization at Pacific Colony -- Conclusion: "We Are Not Out of the Dark Ages Yet," and Finding a Way Out -- Appendix -- Notes -- Bibliography -- Index.

For nearly 80 years, Pennhurst State School and Hospital was a reminder of how society viewed and treated people with intellectual disabilities. Over its existence, Pennhurst was home to more than 10,600 people. Many spent decades there, working to keep the institution running by performing various jobs. While some enjoyed the lives they had fashioned for themselves at Pennhurst, for many others, life there was crushing. Pennhurst also played a central role in the lives of its employees and in the rural Pennsylvania community where it was located. Controversy plagued the institution for its entire existence, and it is remembered primarily as a place where bad things happened. However, it was much more than that. This book provides a window into that separate world, reminding those who were part of it of what they saw and did there and giving those who know only what they have heard or seen a different picture of what Pennhurst truly was.

Conceived in the era of eugenics as a solution to what was termed the “problem of the feeble-minded,” state-operated institutions subjected people with intellectual and developmental disabilities to a life of compulsory incarceration. One of nearly 300 such facilities in the United States, Pennhurst State School and Hospital was initially hailed as a “model institution” but was later revealed to be a nightmare, where medical experimentation and physical and psychological abuse were rampant. At its peak, more than 3,500 residents were confined at Pennhurst, supervised by a staff of fewer than 600. Using a blended narrative of essays and first-person accounts, this history of Pennhurst examines the institution from its founding during an age of Progressive reform to its present-day exploitation as a controversial Halloween attraction. In doing so, it traces a decades-long battle to reform the abhorrent school and hospital and reveals its role as a catalyst for the disability rights movement. Beginning in the 1950s, parent-advocates, social workers, and attorneys joined forces to challenge the dehumanizing conditions at Pennhurst. Their groundbreaking advocacy, accelerated in 1968 by the explosive televised exposé Suffer the Little Children, laid the foundation for lawsuits that transformed American jurisprudence and ended mass institutionalization in the United States. As a result, Pennhurst became a symbolic force in the disability civil rights movement in America and around the world. Extensively researched and featuring the stories of survivors, parents, and advocates, this compelling history will appeal both to those with connections to Pennhurst and to anyone interested in the history of institutionalization and the disability rights movement.

"The most compelling, resonating novel I've read in years... A breathtakingly beautiful, yet heart-wrenchingly aching story that, despite its cruelty and humanity, uplifts the reader." - Omaha World-Herald NEW YORK TIMES BESTSELLER It is 1968. Lynnie, a young white woman with a developmental disability, and Homan, an African American deaf man, are locked away in an institution, the School for the Incurable and Feebleminded, and have been left to languish, forgotten. Deeply in love, they escape, and find refuge in the farmhouse of Martha, a retired schoolteacher and widow. But the couple is not alone-Lynnie has just given birth to a baby girl. When the authorities catch up to them that same night, Homan escapes into the darkness, and Lynnie is caught. But before she is forced back into the institution, she whispers two words to Martha: "Hide her." And so begins the 40-year epic journey of Lynnie, Homan, Martha, and baby Julia-lives divided by seemingly insurmountable obstacles, yet drawn together by a secret pact and extraordinary love.