Being Heumann: An Unrepentant Memoir of a Disability Rights Activist


Judith Heumann - 2020
    From fighting to attend grade school after being described as a "fire hazard" to later winning a lawsuit against the New York City school system for denying her a teacher's license because of her paralysis, Judy's actions set a precedent that fundamentally improved rights for disabled people.As a young woman, Judy rolled her wheelchair through the doors of the US Department of Health, Education, and Welfare in San Francisco as a leader of the Section 504 Sit-In, the longest takeover of a governmental building in US history. Working with a community of over 150 disabled activists and allies, Judy successfully pressured the Carter administration to implement protections for disabled peoples' rights, sparking a national movement and leading to the creation of the Americans with Disabilities Act.Candid, intimate, and irreverent, Judy Heumann's memoir about resistance to exclusion invites readers to imagine and make real a world in which we all belong.

The Poisoned City: Flint's Water and the American Urban Tragedy


Anna Clark - 2018
    Through a series of disastrous decisions, the state government had switched the city’s water to a source that corroded Flint’s aging lead pipes. Complaints about the foul-smelling water were dismissed: the residents of Flint—a largely poor African American city of about 100,000 people—were not seen as credible, even in matters of their own lives.It took 18 months of activism and a band of dogged outsiders to force the state to admit that the water was poisonous. But this was only after 12 people died and Flint's children suffered irreparable harm. The long battle for accountability and a humane response to this man-made disaster have only just begun.In the first full-length account of this epic failure, The Poisoned City recounts the gripping story of Flint’s poisoned water through the people who caused it, suffered from it, and exposed it. It is a chronicle of one town, but could also be about any American city, all made precarious by the neglect of infrastructure and the erosion of democratic decision-making. Cities like Flint are set up to fail—and for the people who live and work in them, the consequences may be mortal.A 2019 Library of Michigan Notable Books

No Pity: People with Disabilities Forging a New Civil Rights Movement


Joseph P. Shapiro - 1993
    People with disabilities forging the newest and last human rights movement of the century.

Brilliant Imperfection: Grappling with Cure


Eli Clare - 2017
    It saves lives, manipulates lives, and prioritizes some lives over others. It provides comfort, makes profits, justifies violence, and promises resolution to body-mind loss. Clare grapples with this knot of contradictions, maintaining that neither an anti-cure politics nor a pro-cure worldview can account for the messy, complex relationships we have with our body-minds.The stories he tells range widely, stretching from disability stereotypes to weight loss surgery, gender transition to skin lightening creams. At each turn, Clare weaves race, disability, sexuality, class, and gender together, insisting on the nonnegotiable value of body-mind difference. Into this mix, he adds environmental politics, thinking about ecosystem loss and restoration as a way of delving more deeply into cure.Ultimately Brilliant Imperfection reveals cure to be an ideology grounded in the twin notions of normal and natural, slippery and powerful, necessary and damaging all at the same time.

An American Sickness: How Healthcare Became Big Business and How You Can Take It Back


Elisabeth Rosenthal - 2017
    In only a few decades, the medical system has been overrun by organizations seeking to exploit for profit the trust that vulnerable and sick Americans place in their healthcare. Our politicians have proven themselves either unwilling or incapable of reining in the increasingly outrageous costs faced by patients, and market-based solutions only seem to funnel larger and larger sums of our money into the hands of corporations. Impossibly high insurance premiums and inexplicably large bills have become facts of life; fatalism has set in. Very quickly Americans have been made to accept paying more for less. How did things get so bad so fast?Breaking down this monolithic business into the individual industries--the hospitals, doctors, insurance companies, and drug manufacturers--that together constitute our healthcare system, Rosenthal exposes the recent evolution of American medicine as never before. How did healthcare, the caring endeavor, become healthcare, the highly profitable industry? Hospital systems, which are managed by business executives, behave like predatory lenders, hounding patients and seizing their homes. Research charities are in bed with big pharmaceutical companies, which surreptitiously profit from the donations made by working people. Patients receive bills in code, from entrepreneurial doctors they never even saw.The system is in tatters, but we can fight back. Dr. Elisabeth Rosenthal doesn't just explain the symptoms, she diagnoses and treats the disease itself. In clear and practical terms, she spells out exactly how to decode medical doublespeak, avoid the pitfalls of the pharmaceuticals racket, and get the care you and your family deserve. She takes you inside the doctor-patient relationship and to hospital C-suites, explaining step-by-step the workings of a system badly lacking transparency. This is about what we can do, as individual patients, both to navigate the maze that is American healthcare and also to demand far-reaching reform. An American Sickness is the frontline defense against a healthcare system that no longer has our well-being at heart.

Demystifying Disability: What to Know, What to Say, and How to Be an Ally


Emily Ladau - 2021
    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. Demystifying Disability is a friendly handbook on important disability issues you need to know about, including: • How to appreciate disability history and identity • How to recognize and avoid ableism (discrimination toward disabled people) • How to be mindful of good disability etiquette • How to appropriately think, talk, and ask about disability • How to ensure accessibility becomes your standard practice, from everyday communication to planning special events • How to identify and speak up about disability stereotypes in mediaAuthored by celebrated disability rights advocate, speaker, and writer Emily Ladau, this practical, intersectional guide offers all readers a welcoming place to understand disability as part of the human experience.

What Can a Body Do?: How We Meet the Built World


Sara Hendren - 2020
    Yet unless, or until, a misfit between our own body and the world is acute enough to be understood as disability, we may never stop to consider--or reconsider--the hidden assumptions on which our everyday environment is built.In a series of vivid stories drawn from the lived experience of disability and the ideas and innovations that have emerged from it--from cyborg arms to customizable cardboard chairs to deaf architecture--Sara Hendren invites us to rethink the things and settings we live with. What might assistance based on the body's stunning capacity for adaptation--rather than a rigid insistence on "normalcy"--look like? Can we foster interdependent, not just independent, living? How do we creatively engineer public spaces that allow us all to navigate our common terrain? By rendering familiar objects and environments newly strange and wondrous, What Can a Body Do? helps us imagine a future that will better meet the extraordinary range of our collective needs and desires.

Disability Theory


Tobin Anthony Siebers - 2008
    Clear, cogent, compelling analyses of the tension between the 'social model' of disability and the material details of impairment; of identity politics and unstable identities; of capability rights and human interdependence; of disability and law, disability as masquerade, disability and sexuality, disability and democracy---they're all here, in beautifully crafted and intellectually startling essays. Disability Theory is a field-defining book: and if you're curious about what 'disability' has to do with 'theory,' it's just the book you've been waiting for, too."---Michael Bérubé, Pennsylvania State University "Disability Theory is magisterially written, thoroughly researched, and polemically powerful. It will be controversial in a number of areas and will probably ruffle feathers both in disability studies as well as in realms of cultural theory. And that's all to the good."---Michael Davidson, University of California, San Diego"Not only is Disability Theory a groundbreaking contribution to disability studies, it is also a bold, ambitious and much needed revision to a number of adjacent and overlapping fields including cultural studies, literary theory, queer theory, and critical race studies. Siebers has written a powerful manifesto that calls theory to account and forces readers to think beyond our comfort zones."---Helen Deutsch, University of California, Los AngelesIntelligent, provocative, and challenging, Disability Theory revolutionizes the terrain of theory by providing indisputable evidence of the value and utility that a disability studies perspective can bring to key critical and cultural questions. Tobin Siebers persuasively argues that disability studies transfigures basic assumptions about identity, ideology, language, politics, social oppression, and the body. At the same time, he advances the emerging field of disability studies by putting its core issues into contact with signal thinkers in cultural studies, literary theory, queer theory, gender studies, and critical race theory.

Being Seen: One Deafblind Woman's Fight to End Ableism


Elsa Sjunneson - 2021
    While she cannot see well enough to operate without a guide dog or cane, she can see enough to know when someone is reacting to the visible signs of her blindness and can hear when they’re whispering behind her back. And she certainly knows how wrong our one-size-fits-all definitions of disability can be. As a media studies professor, she’s also seen the full range of blind and deaf portrayals on film, and here she deconstructs their impact, following common tropes through horror, romance, and everything in between. Part memoir, part cultural criticism, part history of the Deafblind experience, Being Seen explores how our cultural concept of disability is more myth than fact, and the damage it does to us all.

About Us: Essays from the Disability Series of the New York Times


Peter Catapano - 2019
    Speaking not only to those with disabilities, but also to their families, coworkers and support networks, the authors in About Us offer intimate stories of how they navigate a world not built for them.Since its 2016 debut, the popular New York Times’ “Disability” column has transformed the national dialogue around disability. Now, echoing the refrain of the disability rights movement, “Nothing about us without us,” this landmark collection gathers the most powerful essays from the series that speak to the fullness of human experience—stories about first romance, childhood shame and isolation, segregation, professional ambition, child-bearing and parenting, aging and beyond.Reflecting on the fraught conversations around disability—from the friend who says “I don’t think of you as disabled,” to the father who scolds his child with attention differences, “Stop it stop it stop it what is wrong with you?”—the stories here reveal the range of responses, and the variety of consequences, to being labeled as “disabled” by the broader public.Here, a writer recounts her path through medical school as a wheelchair user—forging a unique bridge between patients with disabilities and their physicians. An acclaimed artist with spina bifida discusses her art practice as one that invites us to “stretch ourselves toward a world where all bodies are exquisite.” With these notes of triumph, these stories also offer honest portrayals of frustration over access to medical care, the burden of social stigma and the nearly constant need to self-advocate in the public realm.In its final sections, About Us turns to the questions of love, family and joy to show how it is possible to revel in life as a person with disabilities. Subverting the pervasive belief that disability results in relentless suffering and isolation, a quadriplegic writer reveals how she rediscovered intimacy without touch, and a mother with a chronic illness shares what her condition has taught her young children.With a foreword by Andrew Solomon and introductory comments by co-editors Peter Catapano and Rosemarie Garland-Thomson, About Us is a landmark publication of the disability movement for readers of all backgrounds, forms and abilities.Topics Include: Becoming Disabled • Mental Illness is not a Horror Show • Disability and the Right to Choose • Brain Injury and the Civil Right We Don’t Think • The Deaf Body in Public Space • The Everyday Anxiety of the Stutterer • I Use a Wheelchair. And Yes, I’m Your Doctor • A Symbol for “Nobody” That’s Really for Everybody • Flying While Blind • My $1,000 Anxiety Attack • A Girlfriend of My Own • The Three-Legged Dog Who Carried Me • Passing My Disability On to My Children • I Have Diabetes. Am I to Blame? • Learning to Sing Again • A Disabled Life is a Life Worth Living

In the Kingdom of the Sick: A Social History of Chronic Illness in America


Laurie Edwards - 2013
    Sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." Now more than 133 million Americans live with chronic illness, accounting for nearly three-quarters of all health care dollars, and untold pain and disability.There has been an alarming rise in illnesses that defy diagnosis through clinical tests or have no known cure. Millions of people, especially women, with illnesses such as irritable bowel syndrome, chronic pain, and chronic fatigue syndrome face skepticism from physicians and the public alike. And people with diseases as varied as cardiovascular disease, HIV, certain cancers, and type 2 diabetes have been accused of causing their preventable illnesses through their lifestyle choices.We must balance our faith in medical technology with awareness of the limits of science, and confront our throwback beliefs that people who are sick have weaker character than those who are well. Through research and patient narratives, health writer Laurie Edwards explores patient rights, the role of social media in medical advocacy, the origins of our attitudes about chronic illness, and much more. What The Noonday Demon did for people suffering from depression, In the Kingdom of the Sick does for those who are chronically ill.

Health Justice Now: Single Payer and What Comes Next


Timothy Faust - 2019
    It's cheaper than our current model, and most Americans (and their doctors) already want it. So what's the deal with our current healthcare system, and why don’t we have something better?In Health Justice Now, Timothy Faust explains what single payer is, why we don't yet have it, and how it can be won. He identifies the actors that have misled us for profit and political gain, dispels the myth that healthcare needs to be personally expensive, shows how we can smoothly transition to a new model, and reveals the slate of humane and progressive reforms that we can only achieve with single payer as the springboard.In this impassioned playbook, Faust inspires us to believe in a world where we could leave our job without losing healthcare for ourselves and our kids; where affordable housing is healthcare; and where social justice links arm-in-arm with health justice for us all. Single payer is the tool—health justice is the goal!

Sitting Pretty: The View from My Ordinary Resilient Disabled Body


Rebekah Taussig - 2020
    None of this felt right; and as she got older, she longed for more stories that allowed disability to be complex and ordinary, uncomfortable and fine, painful and fulfilling.Writing about the rhythms and textures of what it means to live in a body that doesn’t fit, Rebekah reflects on everything from the complications of kindness and charity, living both independently and dependently, experiencing intimacy, and how the pervasiveness of ableism in our everyday media directly translates to everyday life.Disability affects all of us, directly or indirectly, at one point or another. By exploring this truth in poignant and lyrical essays, Taussig illustrates the need for more stories and more voices to understand the diversity of humanity. Sitting Pretty challenges us as a society to be patient and vigilant, practical and imaginative, kind and relentless, as we set to work to write an entirely different story.

Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain


Abby Norman - 2018
    She was repeatedly hospitalized in excruciating pain, but the doctors insisted it was a urinary tract infection and sent her home with antibiotics. Unable to get out of bed, much less attend class, Norman dropped out of college and embarked on what would become a years-long journey to discover what was wrong with her. It wasn't until she took matters into her own hands--securing a job in a hospital and educating herself over lunchtime reading in the medical library--that she found an accurate diagnosis of endometriosis.In Ask Me About My Uterus, Norman describes what it was like to have her pain dismissed, to be told it was all in her head, only to be taken seriously when she was accompanied by a boyfriend who confirmed that her sexual performance was, indeed, compromised. Putting her own trials into a broader historical, sociocultural, and political context, Norman shows that women's bodies have long been the battleground of a never-ending war for power, control, medical knowledge, and truth. It's time to refute the belief that being a woman is a preexisting condition.

The Impeachers: The Trial of Andrew Johnson and the Dream of a Just Nation


Brenda Wineapple - 2019
    Congress was divided over how the Union should be reunited: when and how the secessionist South should regain full status, whether former Confederates should be punished, and when and whether black men should be given the vote. Devastated by war and resorting to violence, many white Southerners hoped to restore a pre-Civil War society, just without slavery, and the pugnacious Andrew Johnson, who was no Lincoln, seemed to share their goals. With the unchecked power of executive orders, Johnson ignored Congress, pardoned rebel leaders, promoted white supremacy, opposed civil rights, and called Reconstruction unnecessary. Congress had to stop the American president who acted like a king.With her extensive research and profound insights, Brenda Wineapple dramatically restores this pivotal period in American history, when the country, on the heels of a brutal war, was rocked by the first-ever impeachment of a sitting American president. And she brings to vivid life the extraordinary characters who brought that impeachment forward: the willful Johnson and his retinue of advocates--including complicated men like Secretary of State William Seward--as well as the equally complicated visionaries committed to justice and equality for all, like Thaddeus Stevens, Charles Sumner, Frederick Douglass, and Ulysses S. Grant. Theirs was a last-ditch, patriotic, and Constitutional effort to render the goals of the Civil War into reality and to make the Union free, fair, and whole.