On Being Ill


Virginia Woolf - 1930
    We cannot quote Shakespeare to describe a headache. We must, Woolf says, invent language to describe pain. And though illness enhances our perceptions, she observes that it reduces self-consciousness; it is "the great confessional." Woolf discusses the cultural taboos associated with illness and explores how illness changes the way we read. Poems clarify and astonish, Shakespeare exudes new brilliance, and so does melodramatic fiction!On Being Ill was published as an individual volume by Hogarth Press in 1930. While other Woolf essays, such as A Room of One’s Own and Three Guineas, were first published by Hogarth as individual volumes and have since been widely available, On Being Ill has been overlooked. The Paris Press edition features original cover art by Woolf’s sister, the painter Vanessa Bell. Hermione Lee’s Introduction discusses this extraordinary work, and explores Woolf’s revelations about poetry, language, and illness.

The Body in Pain: The Making and Unmaking of the World


Elaine Scarry - 1985
    The book is an analysis of physical suffering and its relation to the numerous vocabularies and cultural forces--literary, political, philosophical, medical, religious--that confront it. Elaine Scarry bases her study on a wide range of sources: literature and art, medical case histories, documents on torture compiled by Amnesty International, legal transcripts of personal injury trials, and military and strategic writings by such figures as Clausewitz, Churchill, Liddell Hart, and Kissinger, She weaves these into her discussion with an eloquence, humanity, and insight that recall the writings of Hannah Arendt and Jean-Paul Sartre. Scarry begins with the fact of pain's inexpressibility. Not only is physical pain enormously difficult to describe in words--confronted with it, Virginia Woolf once noted, "language runs dry"--it also actively destroys language, reducing sufferers in the most extreme instances to an inarticulate state of cries and moans. Scarry analyzes the political ramifications of deliberately inflicted pain, specifically in the cases of torture and warfare, and shows how to be fictive. From these actions of "unmaking" Scarry turns finally to the actions of "making"--the examples of artistic and cultural creation that work against pain and the debased uses that are made of it. Challenging and inventive, The Body in Pain is landmark work that promises to spark widespread debate.

Criptiques


Caitlin Wood - 2014
    Exploring themes of gender, sexuality, disability/crip culture, identity, ableism and much more, this important anthology provides much needed space for thought-provoking discourse from a highly diverse group of writers. Criptiques takes a cue from the disability rights slogan "Nothing About Us Without Us," illuminating disability experiences from those with firsthand knowledge. Criptiques is for people invested in crip culture, the ones just discovering it, and those completely unfamiliar with the term.Authors who contributed to this collection include: Elsa S. Henry, Ibby Grace, Leroy Moore, Anna Hamilton, Rachel Cohen-Rottenberg, Eva Sweeney, Emily Ladau, Cheryl Green, Mia Mingus, Stefanie Snider, Cara Liebowitz, Nitika Raj, Nina G Comedian, Ben G., Kay Ulanday Barrett, Cat Moran, William Alton, Lydia Brown, Robin Tovey, Alyssa Hillary, Bethany Stevens, Jen Rinaldi, Samantha Walsh, Danine Spencer, Riva Lehrer.

Life As We Know It: A Father, a Family, and an Exceptional Child


Michael Bérubé - 1996
    When Jamie Bérubé was born with Down syndrome in 1991, he was immediately subject to the medical procedures, insurance guidelines, policies, and representations that surround every child our society designates as disabled. In this wrenching yet ultimately inspiring book, Jamie's father, literary scholar Michael Bérubé, describes not only the challenges of raising his son but the challenge of seeing him as a person rather than as a medical, genetic, or social problem.

Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew About Growing Up, Acceptance, and Identity


Sharon daVanportMallory Cruz - 2021
    Furthermore, it is widely believed that many autistic girls and women are underdiagnosed, which has further limited the information available regarding the unique needs of girls and nonbinary people with autism.Sincerely, Your Autistic Child represents an authentic resource for parents and others who care about autism written by people who understand this experience most, autistic people themselves. From childhood and education to culture, gender identity, and sexuality, this anthology of autistic contributors tackles the everyday challenges of growing up while honestly addressing the emotional needs, sensitivity, and vibrancy of the autistic community with a special focus on autistic girls and nonbinary people. Written like letters to parents, the contributors reflect on what they have learned while growing up with autism and how parents can avoid common mistakes and overcome challenges while raising their child.Sincerely, Your Autistic Child calls parents to action by raising awareness and redefining "normal" in order to help parents make their child feel truly accepted, valued, and celebrated for who they are.Contributors: B. Martin Allen, B. Rankowski, K. Asasumasu, M. Baggs, L. Wiley-Mydske, H. Moss, L. XZ Brown, K. Rodriguez, A. Schaber, J. St. Jude, M. Sparrow, M. Cruz, A. Sequenzia, K. Lean, L. Soraya, K. Smith, A. Forshaw, H. Wangelin/HW, V.M. Rodríguez-Roldán, J. Strauss, O.M. Robinson, K. Levin, J. Winegardner, D. Lyubovskaya, E.P. Ballou, S. daVanport, and M. Giwa Onaiwu. Foreword and Afterword by J. Wilson and B. Ryan.

Stim: An Autistic Anthology


Lizzie Huxley-Jones - 2020
    It is rare that autistic people get to share their own experiences, show how creative and talented and passionate they are, how different they are from media stereotypes. This insightful and eye-opening collection of essays, fiction and visual art showcases the immense talents of some of the UK's most exciting writers and artists - who just happen to be on the spectrum. Here they reclaim the power to speak for themselves and redefine what it means to be autistic. Stim invites the reader into the lives, experiences, minds of the eighteen contributors, and asks them to recognise the hurdles of being autistic in a non-autistic world and to uncover the empathy and understanding necessary to continue to champion brilliant yet unheard voices.

Odd Girl Out: An Autistic Woman in a Neurotypical World


Laura James - 2017
    A successful journalist and mother to four children, she had spent her whole life feeling as if she were running a different operating system to those around her. This book charts a year in her life and offers a unique insight into the autistic mind and the journey from diagnosis to acceptance. Drawing on personal experience, research and conversations with experts, she learns how 'different' doesn't need to mean 'less' and how it's never too late for any of us to find our place in the world. Laura explores how and why female autism is so under-diagnosed and very different to that seen in men and boys and explores difficulties and benefits neurodiversity can bring.

My Dyslexia


Philip Schultz - 2011
    Not until many years later, when his oldest son was diagnosed with dyslexia, did Schultz realize that he suffered from the same condition.In his moving memoir, Schultz traces his difficult childhood and his new understanding of his early years. In doing so, he shows how a boy who did not learn to read until he was eleven went on to become a prize-winning poet by sheer force of determination. His balancing act—life as a member of a family with not one but two dyslexics, countered by his intellectual and creative successes as a writer—reveals an inspiring story of the strengths of the human mind.

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

Introducing Psychology of Relationships: A Practical Guide (Introducing...)


John Karter - 2012
    This Practical Guide will help you achieve new and healthier ways of relating by explaining some of the major underlying psychological ‘drivers’ that permeate relationships and identify and work on these unconscious motivating factors to eliminate ‘knee-jerk’ reactions. Filled with straightforward, practical advice, case studies and examples, Introducing Psychology of Relationships will help you understand your relationship and make it more loving and mutually supportive, as well as be better equipped for entering into a new relationship.

Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine


Michele Lent Hirsch - 2018
    She did.Sophie navigates being the only black scientist in her lab while studying the very disease, HIV, that she hides from her coworkers.For Victoria, coming out as a transgender woman was less difficult than coming out as bipolar.Author Michele Lent Hirsch knew she couldn't be the only woman who's faced serious health issues at a young age, as well as the resulting effects on her career, her relationships, and her sense of self. What she found while researching Invisible was a surprisingly large and overlooked population with important stories to tell.Though young women with serious illness tend to be seen as outliers, young female patients are in fact the primary demographic for many illnesses. They are also one of the most ignored groups in our medical system--a system where young women, especially women of color and trans women, are invisible.And because of expectations about gender and age, young women with health issues must often deal with bias in their careers and personal lives. Not only do they feel pressured to seem perfect and youthful, they also find themselves amid labyrinthine obstacles in a culture that has one narrow idea of womanhood.Lent Hirsch weaves her own harrowing experiences together with stories from other women, perspectives from sociologists on structural inequality, and insights from neuroscientists on misogyny in health research. She shows how health issues and disabilities amplify what women in general already confront: warped beauty standards, workplace sexism, worries about romantic partners, and mistrust of their own bodies. By shining a light on this hidden demographic, Lent Hirsch explores the challenges that all women face.

Sex and Disability


Robert McRuer - 2011
    The major texts in sexuality studies, including queer theory, rarely mention disability, and foundational texts in disability studies do not discuss sex in much detail. What if "sex" and "disability" were understood as intimately related concepts? And what if disabled people were seen as both subjects and objects of a range of erotic desires and practices? These are among the questions that this collection's contributors engage. From multiple perspectives—including literary analysis, ethnography, and autobiography—they consider how sex and disability come together and how disabled people negotiate sex and sexual identities in ableist and heteronormative culture. Queering disability studies, while also expanding the purview of queer and sexuality studies, these essays shake up notions about who and what is sexy and sexualizable, what counts as sex, and what desire is. At the same time, they challenge conceptions of disability in the dominant culture, queer studies, and disability studies.Contributors. Chris Bell, Michael Davidson, Lennard J. Davis, Michel Desjardins, Lezlie Frye, Rachael Groner, Kristen Harmon, Michelle Jarman, Alison Kafer, Riva Lehrer, Nicole Markotić, Robert McRuer, Anna Mollow, Rachel O’Connell, Russell Shuttleworth, David Serlin, Tobin Siebers, Abby L. Wilkerson

One of Us: Conjoined Twins and the Future of Normal


Alice Domurat Dreger - 2004
    Anatomy matters, Alice Domurat Dreger tells us, because the senses we possess, the muscles we control, and the resources we require to keep our bodies alive limit and guide what we experience in any given context. Her deeply thought-provoking and compassionate work exposes the breadth and depth of that context--the extent of the social frame upon which we construct the normal. In doing so, the book calls into question assumptions about anatomy and normality, and transforms our understanding of how we are all intricately and inextricably joined.

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers


Toni Bernhard - 2010
    And it can also be the perfect gift of guidance, encouragement, and uplifting inspiration to family, friends, and loved ones struggling with the many terrifying or disheartening life changes that come so close on the heels of a diagnosis of a chronic condition or even a life-threatening illness.The author, who became ill while a university law professor in the prime of her career, tells the reader how she got sick and, to her and her partner's bewilderment, stayed that way. Toni had been a longtime meditator, going on long meditation retreats and spending many hours rigorously practicing, but soon discovered that she simply could no longer engage in those difficult and taxing forms. She had to learn ways to make "being sick" the heart of her spiritual practice and, through truly learning how to be sick, she learned how, even with many physical and energetic limitations, to live a life of equanimity, compassion, and joy. Whether we ourselves are sick now or not, we can learn these vital arts of living well from How to Be Sick.

Claiming Disability: Knowledge and Identity


Simi Linton - 1998
    Claiming Disability captures this moment in the first comprehensive examination of disability studies as a field of inquiry. Arguing that disability studies takes for its subject matter not simply the variations that exist in human behavior, appearance, functioning, sensory acuity, and cognitive processing, but the meaning we make of those variations, this work offers both a passionate challenge to status quo definitions of disability and a methodology for reexamining it.