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.

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.

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.

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.

Tracey had been told this so often as a child. Yet, two months after the horse-riding accident, Tracey was still not able to fulfil it. In fact, at that stage, she couldn’t do anything for herself. You’d think that after nearly losing her life and her abilities to live life as it was before because of the riding accident, that she’d be nervous about getting back on a horse. But her love for horses and riding was so deeply ingrained within her that she couldn’t imagine a life without it. Getting back on a horse...she was determined that she would.

What do you do when you find out that your child has special needs? Nothing prepares you for the shock of receiving a negative diagnosis for your child. The emotional rollercoaster that comes with it can leave you feeling lost and confused. You are suddenly thrown into a different world, grappling with trying to understand your child’s condition and how to care for them.

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?

In this collection of beautiful and raw essays, Amy S. F. Lutz writes openly about her experience - the positive and the negative - as a mother of a now 21-year-old son with severe autism. Lutz's human emotion drives through each moment and challenges commonly held ideas that define autism either as a disease or as neurodiversity.

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.

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.

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.

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.

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.

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.

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.

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.