Best of
Disability-Studies

2017

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.

Pain Woman Takes Your Keys, and Other Essays from a Nervous System


Sonya Huber - 2017
    What about on a scale of spicy to citrus? Is it more like a lava lamp or a mosaic? Pain, though a universal element of human experience, is dimly understood and sometimes barely managed. Pain Woman Takes Your Keys, and Other Essays from a Nervous System is a collection of literary and experimental essays about living with chronic pain. Sonya Huber moves away from a linear narrative to step through the doorway into pain itself, into that strange, unbounded reality. Although the essays are personal in nature, this collection is not a record of the author’s specific condition but an exploration that transcends pain’s airless and constraining world and focuses on its edges from wild and widely ranging angles. Huber addresses the nature and experience of invisible disability, including the challenges of gender bias in our health care system, the search for effective treatment options, and the difficulty of articulating chronic pain. She makes pain a lens of inquiry and lyricism, finds its humor and complexity, describes its irascible character, and explores its temperature, taste, and even its beauty.

The Right to Maim: Debility, Capacity, Disability


Jasbir K. Puar - 2017
    Puar brings her pathbreaking work on the liberal state, sexuality, and biopolitics to bear on our understanding of disability. Drawing on a stunning array of theoretical and methodological frameworks, Puar uses the concept of “debility”—bodily injury and social exclusion brought on by economic and political factors—to disrupt the category of disability. She shows how debility, disability, and capacity together constitute an assemblage that states use to control populations. Puar's analysis culminates in an interrogation of Israel's policies toward Palestine, in which she outlines how Israel brings Palestinians into biopolitical being by designating them available for injury. Supplementing its right to kill with what Puar calls the right to maim, the Israeli state relies on liberal frameworks of disability to obscure and enable the mass debilitation of Palestinian bodies. Tracing disability's interaction with debility and capacity, Puar offers a brilliant rethinking of Foucauldian biopolitics while showing how disability functions at the intersection of imperialism and racialized capital.

All the Weight of Our Dreams: On Living Racialized Autism


Lydia X.Z. Brown - 2017
    The work here represents the lives, politics, and artistic expressions of Black, Brown, Latinx, Indigenous, Mixed-Race, and other racialized and people of color from many autistic communities, often speaking out sharply on issues of marginality, intersectionality, and liberation.

Academic Ableism: Disability and Higher Education


Jay Timothy Dolmage - 2017
    For too long, argues Jay Timothy Dolmage, disability has been constructed as the antithesis of higher education, often positioned as a distraction, a drain, a problem to be solved. The ethic of higher education encourages students and teachers alike to accentuate ability, valorize perfection, and stigmatize anything that hints at intellectual, mental, or physical weakness, even as we gesture toward the value of diversity and innovation. Examining everything from campus accommodation processes, to architecture, to popular films about college life, Dolmage argues that disability is central to higher education, and that building more inclusive schools allows better education for all.

Sonata: A Memoir of Pain and the Piano


Andrea Avery - 2017
    The heartbreaking story of this mysterious sonata—Schubert’s last, and his most elusive and haunting—is the soundtrack of Andrea's story.Sonata is a breathtaking exploration of a “Janus-head miracle”—Andrea's extraordinary talent and even more extraordinary illness. With no cure for her R.A. possible, Andrea must learn to live with this disease while not letting it define her, even though it leaves its mark on everything around her—family, relationships, even the clothes she wears. And in this riveting account, she never loses her wit, humor, or the raw artistry of a true performer.As the goshawk becomes a source of both devotion and frustration for Helen Macdonald in H is for Hawk, so the piano comes to represent both struggle and salvation for Andrea in her extraordinary debut.

Authoring Autism: On Rhetoric and Neurological Queerness


Melanie Yergeau - 2017
    Remi Yergeau defines neurodivergence as an identity—neuroqueerness—rather than an impairment. Using a queer theory framework, Yergeau notes the stereotypes that deny autistic people their humanity and the chance to define themselves while also challenging cognitive studies scholarship and its reification of the neurological passivity of autistics. They also critique early intensive behavioral interventions—which have much in common with gay conversion therapy—and questions the ableist privileging of intentionality and diplomacy in rhetorical traditions. Using storying as their method, they present an alternative view of autistic rhetoricity by foregrounding the cunning rhetorical abilities of autistics and by framing autism as a narrative condition wherein autistics are the best-equipped people to define their experience. Contending that autism represents a queer way of being that simultaneously embraces and rejects the rhetorical, Yergeau shows how autistic people queer the lines of rhetoric, humanity, and agency. In so doing, they demonstrate how an autistic rhetoric requires the reconceptualization of rhetoric’s very essence.

My Chernobyl: The Human Story of a Scientist and the nuclear power Plant Catastrophe


Alexander Borovoi - 2017
    On April 29, Alexander A. Borovoi, an atomic physicist with the Kurchatov Institute in Moscow, was ordered to Chernobyl to help measure and control the release of lethal radioactive materials. He stayed for twenty-three years. In "My Chernobyl", first published in 1996—at which time, the Russian magazine "New World" called it the best work of journalism for that year—Borovoi writes of his first two years at Chernobyl, when the initial response to the catastrophe was, as a rule, heroic, but unfortunately not always effective. Although "My Chernobyl" touches on technical aspects of dealing with the uncontrolled release of radioactivity from the damaged nuclear reactor, Borovoi tells stories—sometimes humorous, sometimes chilling—of people charged with different aspects of the cleanup, as well as some who were directly affected by the tragedy. Told in an engaging style, "My Chernobyl" is a personal and unforgettable story of an international crisis. Borovoi’s calm, levelheaded, and human responses to both the original meltdown and the problems created by ill-founded attempts to manage the disaster contain lessons for our world today, as new crises continually loom on the horizon.

Understanding Autism in Adults and Aging Adults: Improving Diagnosis and Quality of Life


Theresa Regan - 2017
    right? Not right. Children with autism grow into adults with autism. The great strides we have made in understanding childhood autistic behaviors and interventions have lagged dramatically behind the needs of aging autistics. What of the young adult trying to build relationships? What of the middle aged autistic adult who has been misdiagnosed with bipolar disorder and lacks an effective treatment plan? What of the aging adult who is showing increasingly rigid autistic behaviors and is misdiagnosed as having frontotemporal dementia? Understanding Autism in Adults and Aging Adults is a one-of-a-kind resource designed to improve the correct diagnosis of autism spectrum disorder in adults. Filled with clinical stories that bring to life the concepts discussed, the book provides strategy-based interventions to address issues of personal and household management, medical care, communication, sensory processing symptoms, and emotional and behavioral regulation.

The Pedagogy of Pathologization: Dis/Abled Girls of Color in the School-Prison Nexus


Subini Ancy Annamma - 2017
    amid the prevalence of targeted mass incarceration. Focusing uniquely on the pathologization of female students of color, whose voices are frequently engulfed by labels of deviance and disability, a distinct and underrepresented experience of the school-to-prison pipeline is detailed through original qualitative methods rooted in authentic narratives. The book's DisCrit framework, grounded in interdisciplinary research, draws on scholarship from critical race theory, disability studies, education, women's and girl's studies, legal studies, and more.

Life of the Mind Interrupted: Essays on Mental Health and Disability in Higher Education


Katie Rose Guest Pryal - 2017
    Colleagues carelessly call each other “schizo” and “bipolar.” Another colleague is fired—easy enough to do these days, when most college teachers no longer have tenure—for “instability.” In these ways and many more, psychiatrically disabled people working in higher education are reminded every day that their privilege, their very livelihoods, can be stripped away by the groundless suspicions of others. Their lives can be, in an instant, interrupted.The essays in this book cover topics such as disclosure of disabilities, accommodations and accessibility, how to be a good abled friend to a disabled person, the trigger warnings debate, and more. Written for a popular audience, for those with disabilities and for those who want to learn more about living a disabled life, Life of the Mind Interrupted aims to make higher education, and the rest of our society, more humane.Katie Rose Guest Pryal is one of the foremost writers of disability and higher education we have today. —Catherine J. Prendergast, Ph.D., Professor of Disability Studies

Beginning with Disability: A Primer


Lennard J. Davis - 2017
    Beginning with Disability is the first introductory primer for disaibility studies aimed at first year students in two- and four-year colleges. This volume of essays across disciplines--including education, sociology, communications, psychology, social sciences, and humanities--features accessible, readable, and relatively short chapters that do not require specialized knowledge.Lennard Davis, along with a team of consulting editors, has compiled a number of blogs, vlogs, and other videos to make the materials more relatable and vivid to students. Subject to Debate boxes spotlight short pro and con pieces on controversial subjects that can be debated in class or act as prompts for assignments.

Naming Adult Autism: Culture, Science, Identity


James McGrath - 2017
    Autism is a 'social disorder', defined by interactions and lifestyle. Yet, the expectations of normalcy against which Autism is defined have too rarely been questioned. This book demonstrates the value of the Humanities towards developing fuller understandings of Autistic adulthood, adapting theory from Adorno, Foucault and Butler. The chapters expose serious scientific limitations of medical assumptions that Autistic people are gifted at maths but indifferent to fiction. After interrogating such cliches in literature, cinema and television, James McGrath also explores more radical depictions of Autism via novels by Douglas Coupland, Margaret Atwood, Clare Morrall and Meg Wolitzer, plus poems by Les Murray and Joanne Limburg

CMT and Me: An intimate 75-year journey of love, loss and refusal to surrender to a disabling disease


Linda D. Crabtree - 2017
    Seventy-five years later she writes about her forays into education, journalism, running a charity, publishing, art, antiques, designing a house and her travels. The emotional undercurrents of love, the question of children, marriage, alcoholism, divorce, marriage again and great loss are explored. And then there’s her love of dogs. It has been a roller-coaster of a ride and this passionate, entrepreneurial woman has kept plugging away all the while dealing with an inherited neuromuscular condition called Charcot-Marie-Tooth (CMT) disease, named after three doctors, that has slowly progressed over the years to take away her ability to walk and is now robbing her of the use of her hands. The recipient of 28 awards, medals and honours, Linda is proud to be a Member of the Order of Canada and the Order of Ontario and has been in Canada’s Who’s Who for the past 20 years. Find out why. Excerpt: “ …With $15 for paper and envelopes and a few postage stamps, I typed letters to editors of all of the newspapers in Canada, telling them that I had a rare disease with a strange name, knew no one else with it, and was looking for information and people to share our concerns and triumphs. My letters were published in newspapers across the country and within a few weeks I had received so many letters from people also diagnosed with CMT, or suspecting they had it, and wanting information that I knew I was onto something. My curiosity was piqued. How many people with CMT were out there? Now I had a real challenge. How many could I find? I went back to the library and photocopied all the addresses for the newspapers in the United States. Those letters went out and, before I knew it, I had more than 350 replies from people all wanting to know more. Trouble was, I didn’t have more to give them. We’d have to learn from each other. And there was no way I could type 350 individual letters in reply. I had to figure out a way to answer them all at the same time. Personal computers were a rare commodity at that time. The solution to my dilemma turned out to be a mass mailing and in the summer of 1984 the CMT Newsletter was born. It wasn’t much – only eight pages, the columns typed, cut out and pasted down and then everything photocopied – but it was something.”

Spoon Knife 2: Test Chamber (The Spoon Knife Anthology)


Dani Alexis Ryskamp - 2017
    It brought together a diverse array of disabled, Mad, and Queer voices, making it the biggest Autonomous Press anthology at the time, and the first from the NeuroQueer Books division. In Spoon Knife 2: Test Chamber, that call was extended. This time, we asked writers what it felt like to live in a life where every move, every choice, and every outcome is scrutinized. That is the test chamber, and these 36 meditations on the ways power is felt and the choices individuals made in light of their confrontations with power are cement the conviction of fans of the first volume that this series is one to watch out for. We also selected work that reflects our partnership. That means heavy representation from transgender authors, who have written the majority of the pieces in the book, if not the majority of the words. It also means rich autistic representation. It means embracing a big-tent approach to both neurodiversity and sexual and gender diversity in a way unique to NeuroQueer Books. The Spoon Knife Anthology is NeuroQueer Books' annual open-call collection to find new talent and to bring together our favorite regular contributors in a celebration of literature that pushes boundaries and defines the interiors of neurodivergent, Queer, and Mad experiences. Editors Dani Alexis Ryskamp and Sam Harvey give you a series of examinations of what it means to live in an environment where one feels that existence itself is a series of tests that must be successfully navigated. From the back cover: "The writers (and editors and publishers) of the book you now hold in your hands have this in common: we all diverge in some way(s) from the normative, the expected, the acceptable. We've all been pathologized, scrutinized, corrected--often, in horrible ways. As [we] write this, the United States finds itself in a new test chamber, one whose outputs will inevitably affect the rest of the world. Those of us throughout the world who find ourselves already marginalized, like the authors represented here, will suffer first, but we will not suffer alone. We all need the tools of defiance and resistance. In Spoon Knife 2: Test Chamber, we explore what happens when the tools of defiance and resistance are applied to a particular purpose or demand. We test the test chamber in which we find ourselves, and in so doing, we find the power to subvert it." Please join us for our second year celebrating the diversity and craft that goes into neurodivergent, Queer, and Mad literature, and enjoy the second round of Spoon Knife. You will find a number of familiar AutPress authors in its pages, as well as a few names of people who will be delivering books through the press later this year and more than a couple of authors we hope to publish again. And don't forget to be on the lookout for new Spoon Knife Anthology guidelines every spring from Autonomous Press and NeuroQueer Books. Authors include: N.I. Nicholson, Amy Sequenzia, Alyssa Hillary, Nick Walker, Alison Black, Arden Green, Andrea Abi-Karam, Clay Dillon, Alyssa Gonzalez, Monika Dryburgh, EL Lewy, Nicole Eugene, Eleven Groothius, Phil Smith, Jacqueline Pruder St. Antoine, Monday Dillon, Verity Reynolds, Barbara Ruth, Michael Scott Monje Jr., Marrok Zenon Sedgwick, Steven J. Singer, Meghan O'Hern, Emma Whetsell, Athena the Architect, Lynn Vargas, Alex Connall, Michael T. Chin, Sparrow Rose Jones, and Andrew Reichart.

A Secret Life: Surviving A Rare Congenital Condition


Greg Ryan - 2017
    A story of human courage, loneliness, enlightenment and joy. He was born 55 years ago, by rights he could have died within the first few days as he had been born without an anal opening, with a rare condition called Imperforate Anus, also known as Anorectal Malformation. Fortunately for his family he was born in Melbourne Australia where the Royal Children's Hospital was located and due to the incredible skills of their surgeons, they could perform marvellous life-saving surgery which gave him a chance of life.But he and his family could never have prepared for the physical and psychological anxiety that was to be his life's companion. But there was hope, and Greg tells that story candidly and sensitively in his autobiography "A Secret Life - Surviving a Rare Congenital Condition", which was first released in August 2016, and has been sold in over 50 countries worldwide and opened a dialogue for those born with this congenital condition, and also to assist families and medical professionals in understanding the lived experience.This is an updated version with an extra 40 pages which includes added information provided my Greg's mother and also a valuable contribution from the pioneer of IA/ARM surgery, Dr Alberto Pena.

Negotiating Disability: Disclosure and Higher Education


Stephanie L. Kerschbaum - 2017
    This collection reveals the pervasiveness of disability issues and considerations within many higher education populations and settings, from classrooms to physical environments to policy impacts on students, faculty, administrators, and staff. While disclosing one's disability and identifying shared experiences can engender moments of solidarity, the situation is always complicated by the intersecting factors of race and ethnicity, gender, sexuality, and class. With disability disclosure as a central point of departure, this collection of essays builds on scholarship that highlights the deeply rhetorical nature of disclosure and embodied movement, emphasizing disability disclosure as a complex calculus in which degrees of perceptibility are dependent on contexts, types of interactions that are unfolding, interlocutors' long- and short-term goals, disabilities, and disability experiences, and many other contingencies.

The Contamination of the Earth: A History of Pollutions in the Industrial Age


François JARRIGE - 2017
    As our capacities for production and our aptitude for consumption have increased, so have their byproducts--chemical contamination from fertilizers and pesticides, diesel emissions, oil spills, a vast "plastic continent" found floating in the ocean. The Contamination of the Earth offers a social and political history of industrial pollution, mapping its trajectories over three centuries, from the toxic wastes of early tanneries to the fossil fuel energy regime of the twentieth century.The authors describe how, from 1750 onward, in contrast to the early modern period, polluted water and air came to be seen as inevitable side effects of industrialization, which was universally regarded as beneficial. By the nineteenth century, pollutants became constituent elements of modernity. The authors trace the evolution of these various pollutions, and describe the ways in which they were simultaneously denounced and permitted. The twentieth century saw new and massive scales of pollution: chemicals that resisted biodegradation, including napalm and other defoliants used as weapons of war; the ascendancy of oil; and a lifestyle defined by consumption. In the 1970s, pollution became a political issue, but efforts--local, national, and global--to regulate it often fell short. Viewing the history of pollution though a political lens, the authors also offer lessons for the future of the industrial world.

No Right to Be Idle: The Invention of Disability, 1840s-1930s


Sarah F. Rose - 2017
    But as Sarah F. Rose explains in No Right to Be Idle, a perfect storm of public policies, shifting family structures, and economic changes effectively barred workers with disabilities from mainstream workplaces and simultaneously cast disabled people as morally questionable dependents in need of permanent rehabilitation to achieve "self-care" and "self-support." By tracing the experiences of policymakers, employers, reformers, and disabled people caught up in this epochal transition, Rose masterfully integrates disability history and labor history. She shows how people with disabilities lost access to paid work and the status of "worker--a shift that relegated them and their families to poverty and second-class economic and social citizenship. This has vast consequences for debates about disability, work, poverty, and welfare in the century to come.

Writing Centers and Disability


Rebecca Day Babcock - 2017
    The field of writing centers has long concerned itself with diversity related to such categories as race, class, gender, and language; recently, however, awareness of disability as a diversity category has been growing in higher education. This collection, Writing Centers and Disability, aims to investigate the vital intersection of Writing Center Studies and Disability Studies and to generate critical discussion about topics such as the challenge of structural accommodations; creating inclusive environments and practices; adopting flexible approaches to teaching and learning; and following collaborative approaches to working with others. The book includes not only reports of research studies about disability in the writing center and of successful and innovative programs, but also narratives of experience from a wide range of voices including staff and students with and without disabilities who work in writing centers. Each chapter includes a set of practical applications for the consideration of writing center practitioners, and concludes with a few critical questions to generate further reflection and discussion about writing centers and disability. This book is a valuable resource for writing center practitioners and the practical suggestions will help incorporate disability in our tutor training programs and to develop more flexible approaches to working with disability in the writing center.

Her Own Hero: The Origins of the Women's Self-Defense Movement


Wendy L. Rouse - 2017
    At the turn of the twentieth century, women famously organized to demand greater social and political freedoms like gaining the right to vote. However, few realize that the Progressive Era also witnessed the birth of the women's self-defense movement.It is nearly impossible in today's day and age to imagine a world without the concept of women's self defense. Some women were inspired to take up boxing and jiu-jitsu for very personal reasons that ranged from protecting themselves from attacks by strangers on the street to rejecting gendered notions about feminine weakness and empowering themselves as their own protectors. Women's training in self defense was both a reflection of and a response to the broader cultural issues of the time, including the women's rights movement and the campaign for the vote.Perhaps more importantly, the discussion surrounding women's self-defense revealed powerful myths about the source of violence against women and opened up conversations about the less visible violence that many women faced in their own homes. Through self-defense training, women debunked patriarchal myths about inherent feminine weakness, creating a new image of women as powerful and self-reliant. Whether or not women consciously pursued self-defense for these reasons, their actions embodied feminist politics. Although their individual motivations may have varied, their collective action echoed through the twentieth century, demanding emancipation from the constrictions that prevented women from exercising their full rights as citizens and human beings. This book is a fascinating and comprehensive introduction to one of the most important women's issues of all time.This book will provoke good debate and offer distinct responses and solutions.