Disability Essays

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.

One in five people in the United States lives with a disability. Some disabilities are visible, others less apparent - but all are underrepresented in media and popular culture. Now, just in time for the 30th anniversary of the Americans with Disabilities Act, activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people.

In the wake of the 2014 Ferguson riots, and sick with a chronic condition that rendered them housebound, Johanna Hedva turned to the page to ask: How do you throw a brick through the window of a bank if you can’t get out of bed? It was not long before this essay, “Sick Woman Theory”, became a seminal work on disability, because in reframing illness as not just a biological experience but a social one, Hedva argues that under capitalism—a system that limits our worth to the productivity of our bodies—we must reach for the revolutionary act of caring for ourselves and others.

Caring or careless? In this powerful and moving essay, Micheline Lee tells the story of the National Disability Insurance Scheme, a transformative social change that ran into problems. For some users it has been “the only lifeboat in the ocean,” but for others it has meant still more exclusion. Lee explains what happened, showing that the NDIS, for all its good intentions, has not understood people with disabilities well enough. While government thought the market could do its job, a caring society cannot be outsourced.

Boldly claiming a space in which people with disabilities can be seen and heard as they are-not as others perceive them - About Us captures the voices of a community that has for too long been stereotyped and misrepresented. 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.

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. 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 a different story.

A revelatory collection of essays on the DeafBlind experience, and a manifesto on the power and untapped potential of touch. Born Deaf into an ASL-speaking family and blind by adolescence, John Lee Clark learned to embrace the possibilities of his tactile world. He is on the frontlines of the Protactile movement, which gave birth to an unprecedented tactile language and a way of life based on physical connection.

Early in her career, Katie Pryal learned that being a professor isn’t easy if your brain isn’t quite right. “I was a junior in college when I finally realized that I was different in a way that my medically inclined parents would call ‘clinical.’” In these deeply personal, fiery essays, Pryal tells her story of transformation that began the moment she chose to publicly disclose her own mental illness and leave her career in higher education to begin fighting for a better world for people with psychiatric disabilities.

私たちは本当に「見て」いるのか?触れて、聴いて、初めてわかる、この社会のかたち。時に鋭く、そしてあたたかく。ユーモアに満ちた随想集。

We treat the body as an afterthought, until it no longer can be. Until the pain or the pleasure is too great. Sinéad Gleeson's life has been marked by terrible illness, including leukemia and debilitating arthritis. As a child, she bathed in the springs of Lourdes, ever hopeful that her body would cooperate, ever looking forward to the day when she could take her body for granted. But just as she turns inward to explore her own pain, and then the marvel of recovery, and then the arrival of her greatest joys—falling in love, becoming a mother—she turns her gaze outward.

先天性疾患を持って生まれ、「生まれた時から歩けなくなることは分かっていた。」という彼が、１２歳で車いすユーザーになり、車いすバスケに出会い、銀メダルを獲るまでをまとめたヒューマンエッセイ。