Disability Care

In this collection of essays, Lambda Literary Award-winning writer and longtime activist and performance artist Leah Lakshmi Piepzna-Samarasinha explores the politics and realities of disability justice, a movement that centers the lives and leadership of sick and disabled queer, trans, Black, and brown people, with knowledge and gifts for all. Care Work is a mapping of access as radical love, a celebration of the work that sick and disabled queer/people of color are doing to find each other and to build power and community.

What is intimacy? More than sex, more than romantic love, the pieces in this stunning and illuminating new anthology offer broader and more inclusive definitions of what it can mean to be intimate with another person. Explorations of caregiving, community, access, and friendship offer us alternative ways of thinking about the connections we form with others—a vital reimagining in an era when forced physical distance is at times a necessary norm.

First came the boom - the loud, deep, unapologetic bellow that seemed to erupt from the very core of the Earth. Eerily, the majestic high-rise slowly leaned to the south. On the 78th floor of the World Trade Center's north tower, no alarms sounded, and no one had information about what had happened at 8:46 a.m. on September 11, 2001. Blind since birth, Michael couldn't see a thing, but he could hear the sounds of shattering glass, falling debris, and terrified people flooding around him and his guide dog, Roselle.

With Mental Health, Inc., award-winning investigative journalist Art Levine delivers a Shock Doctrine-style exposé of the failures of our out-of-control, profits-driven mental health system, with a special emphasis on the failures of the pharmaceuticals industry, including the treatment of children with antipsychotics and disastrous PTSD protocols for veterans.

Behind our current caregiving crisis, in which a broken system has left parents and caregivers exhausted, sits a fierce addiction to independence. But what would happen if we started to appreciate dependency, and the deep meaning of one person caring for another? If we start to care about care? With a curiosity and desire to understand more fully one of humanity’s most profound and essential relationships, journalist Elissa Strauss she interrogates our societal obsession with going it alone and poses a challenge to let ourselves be transformed by the act of caregiving.

Just Care is Akemi Nishida’s thoughtful examination of care injustice and social justice enabled through care. The current neoliberal political economy has turned care into a business opportunity for the healthcare industrial complex and a mechanism of social oppression and control. Nishida analyzes the challenges people negotiate whether they are situated as caregivers, receivers, or both. Also illuminated is how people with disabilities come together to assemble community care collectives and bed activism (resistance and visions emerging from the space of bed) to reimagine care as a key element for social change.

An eye-opening wife’s journal which speaks about an amazing and unbelievable traumatic brain injury adventure. Written with love, respect, and humor, this is a must-listen for anyone who wants to know about a TBI survivor’s daily routine.

Stephen Kuusisto was born legally blind - but he was also raised in the 1950s and taught to deny his blindness in order to "pass" as sighted. Stephen attended public school, rode a bike, and read books pressed right up against his nose. As an adult, he coped with his limited vision by becoming a professor in a small college town, memorizing routes for all of the places he needed to be. Then, at the age of 38, he was laid off. With no other job opportunities in his vicinity, he would have to travel to find work.

Mara Tagarelli is, professionally, the head of a multimillion-dollar AIDS foundation; personally, she is a committed martial artist. But her life has turned inside out like a sock. She can’t rely on family, her body is letting her down, and friends and colleagues are turning away - they treat her like a victim. She needs to break that narrative: build her own community, learn new strengths, and fight. But what do you do when you find out that the story you’ve been told, the story you’ve told yourself, is not true?

Rosemary Mahoney tells the story of Braille Without Borders, the first school for the blind in Tibet, and of Sabriye Tenberken, the remarkable blind woman who founded the school. Fascinated and impressed by what she learned from the blind children of Tibet, Mahoney was moved to investigate further the cultural history of blindness. As part of her research, she spent three months teaching at Tenberken's international training center for blind adults in Kerala, India, an experience that reveals both the shocking oppression endured by the world's blind, as well as their great resilience.

Amit Patel is working as a trauma doctor when a rare condition causes him to lose his sight within 36 hours. Totally dependent on others and terrified of stepping outside with a white cane after he's assaulted, he hits rock bottom. He refuses to leave home on his own for three months. With the support of his wife, Seema, he slowly adapts to his new situation, but how could life ever be the way it was? Then his guide dog, Kika, comes along....

When John Tovey lost his sight at the age of 42, he thought his life was over. He was wrong, it was just beginning. John had followed a bad path drifting in and out of trouble. He was sent to improvement schools, a young offenders institute and eventually a prison. John was on self-destruct and thought nothing or no one could help him. Then he became the victim of a vicious attack by a notorious train ‘steaming’ gang. John knew he had to take the witness stand.

A sudden rise in opioid addicts coinciding with a sudden drop in legally available opioids, created a desperation for prescription drugs never seen before in this country. Physicians shut down their previous practice of repeated refills, once the death toll was too high to ignore. As hospitals and rehab facilities instituted drug testing and CORI checks to ensure employees were clean, one health-care option stood alone as a place to easily obtain painkillers. That place was home health care.

People around the world have fallen in love with Penguin the Magpie, a global social media sensation, and her adventures with her human family. But there is far more to Penguin's story than meets the eye. It all begins when Sam, Cameron Bloom's wife, suffers a near fatal fall that leaves her paralyzed and deeply depressed. One of their three sons, reeling from the tragic accident, discovers an injured magpie chick abandoned after she had fallen from her nest. The boys name the bird Penguin, for her black-and-white plumage.

The success of food allergy activism in highlighting the dangers of foodborne allergens shows how illness communities can effectively advocate for the needs of their members. In Food Allergy Advocacy, Danya Glabau follows parents and activists as they fight for allergen-free environments, accurate labeling, the fair application of disability law, and access to life-saving medications for food-allergic children in the United States.

In this moving memoir, Joy Clausen Soto vividly brings us into her world. We see her go from her dream job to fighting for her life, and how she is able to come back from it all. You can't avoid falling in love with her quirks, indomitable spirit, and wry sense of humor. Soto takes listeners on a compelling journey as she faces cancer and the challenges she encounters while re-entering "normal" life.

Half a world away from home in 1976, 18-year old Anne B. Thomas awakens on the side of a two-lane road paralyzed from the chest down. Fast forward through a rigorous year of physical therapy to when her doctor gives her an ominous warning: “You will live a long time and be a burden on your family for the rest of your life unless you check yourself into a nursing home”.

The Underdogs tells the story of Karen Shirk, felled at age 24 by a neuromuscular disease and facing life as a ventilator-dependent, immobile patient, who was turned down by every service dog agency in the country because she was "too disabled". Her nurse encouraged her to tone down the suicidal thoughts, find a puppy, and raise her own service dog. Karen did this, and Ben, a German shepherd, dragged her back into life.

Come, Let Me Guide You explores the intimate communication between author Susan Krieger and her guide dog Teela over the 10-year span of their working life together. This is a book about being led by a dog to new places in the world and new places in the self, a book about facing life's challenges outwardly and within, and about reading those clues - those deeply felt signals - that can help guide the way.

Ride the wave of hope with Ricochet - the only dog in the world who surfs with wounded warriors, people with disabilities, and children with special needs as an assistive aid and SURFice dog. This tears-to-triumph story takes listeners behind the TV and video sensation and shares the true journey that went from promise to disappointment before ultimately finding life's purpose. The gorgeous golden retriever Ricochet seemed destined to be a service dog from the moment she was born.