front cover of Fixing Sex
Fixing Sex
Intersex, Medical Authority, and Lived Experience
Katrina Karkazis
Duke University Press, 2008
What happens when a baby is born with “ambiguous” genitalia or a combination of “male” and “female” body parts? Clinicians and parents in these situations are confronted with complicated questions such as whether a girl can have XY chromosomes, or whether some penises are “too small” for a male sex assignment. Since the 1950s, standard treatment has involved determining a sex for these infants and performing surgery to normalize the infant’s genitalia. Over the past decade intersex advocates have mounted unprecedented challenges to treatment, offering alternative perspectives about the meaning and appropriate medical response to intersexuality and driving the field of those who treat intersex conditions into a deep crisis. Katrina Karkazis offers a nuanced, compassionate picture of these charged issues in Fixing Sex, the first book to examine contemporary controversies over the medical management of intersexuality in the United States from the multiple perspectives of those most intimately involved.

Drawing extensively on interviews with adults with intersex conditions, parents, and physicians, Karkazis moves beyond the heated rhetoric to reveal the complex reality of how intersexuality is understood, treated, and experienced today. As she unravels the historical, technological, social, and political forces that have culminated in debates surrounding intersexuality, Karkazis exposes the contentious disagreements among theorists, physicians, intersex adults, activists, and parents—and all that those debates imply about gender and the changing landscape of intersex management. She argues that by viewing intersexuality exclusively through a narrow medical lens we avoid much more difficult questions. Do gender atypical bodies require treatment? Should physicians intervene to control the “sex” of the body? As this illuminating book reveals, debates over treatment for intersexuality force reassessment of the seemingly natural connections between gender, biology, and the body.

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From Lived Experience to the Written Word
Reconstructing Practical Knowledge in the Early Modern World
Pamela H. Smith
University of Chicago Press, 2022
How and why early modern European artisans began to record their knowledge.

In From Lived Experience to the Written Word, Pamela H. Smith considers how and why, beginning in 1400 CE, European craftspeople began to write down their making practices. Rather than simply passing along knowledge in the workshop, these literate artisans chose to publish handbooks, guides, treatises, tip sheets, graphs, and recipe books, sparking early technical writing and laying the groundwork for how we think about scientific knowledge today.
 
Focusing on metalworking from 1400–1800 CE, Smith looks at the nature of craft knowledge and skill, studying present-day and historical practices, objects, recipes, and artisanal manuals. From these sources, she considers how we can reconstruct centuries of largely lost knowledge. In doing so, she aims not only to unearth the techniques, material processes, and embodied experience of the past but also to gain insight into the lifeworld of artisans and their understandings of matter.
 
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The Lived Experience of Improvisation
In Music, Learning and Life
Simon Rose
Intellect Books, 2017
Improvisation is crucial to a wide range of artistic activities—most prominently, perhaps, in music, but extending to other fields of experience such as literature and pedagogy. Yet it gets short shrift in both appreciation and analysis of art within education. This is in no small part due to our tendency to view the world in fixed categories and structures that belie our ability to generate creative, groundbreaking responses within and between those structures.
            The Lived Experience of Improvisation draws on an analysis of interviews with highly regarded improvisers, including Roscoe Mitchell, Pauline Oliveros, and George Lewis. Simon Rose also exploits his own experience as a musician and teacher, making a compelling case for bringing back improvisation from the margins. He argues that improvisation is a pervasive aspect of being human and that it should be at the heart of our teaching and understanding of the world.
 
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Meaning Of A Disability
The Lived Experience of Paralysis
Albert Robillard
Temple University Press, 1999
When ethnomethodologist Albert Robillard began to suffer the  symptoms of motor-neuron disease, he realized he was a living laboratory for revealing the countless taken-for-granted methods people use to produce being together. Meaning of a Disability is a detailed autobiography of the experiences and trained observations of a university professor who became paralyzed in mid-life.

With his loss of speech, Robillard was forced to communicate through a lip-reading system developed by his wife and student assistants. Restricted by this form of communication and his paralysis, he soon learned the frustrations of making his  meaning known. Hospital nurses wrongly anticipated his words. Those who translated for him inevitably distorted his meaning. Most of all, the casual pace of conversational  give-and-take was disrupted. Old friends would leave before Robillard could provide the expected interactional response.

Finding himself isolated due to his lack of both mobility and vocalization, Robillard threw himself into his academic work and began to develop settings and methods where he could satisfactorily interact with others. A researcher and writer experienced in describing the bodily and verbal methods used to coordinate and construct the most ordinary of social forms, Robillard joins in this book both his years of sociological training and his time with illness to talk with moving and illuminating analysis about a  broad range of matters. Moving gracefully from examinations of narratives about disability and illness, the stigmatizing things that healthcare providers unwittingly say to their patients, and communication problems in the intensive care unit, to more personal reflections on anger, isolation, and stories of tragedy, Robillard also discusses disability in the workplace and such seemingly simple topics as computers and vacations. Meaning of a Disability is the personal story of a highly trained observer forced to confront simultaneously the limits of the disabled person's social world and the unspoken assumptions about meaningful interaction -- as he struggles with the daily difficulties of maintaining his identity.

Meaning of a Disability will interest a wide audience, including healthcare professionals, disabled people, and caretakers as well as academics studying ethnomethodology, health and illness, conversation, symbolic interaction, storytelling, and most aspects of lived experience.
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Profiles in Resilience
Books for Children and Teens That Center the Lived Experience of Generational Poverty
Christina H. Dorr
American Library Association, 2021
“This book helps to expand the definition of diversity in children’s books by shedding light on an element of diversity that is sometimes overlooked—economic situation or income . . . Teachers and librarians will find it informative and engaging as it deepens their experience with both authors and books as well as their understanding of children who are experiencing generational poverty.”
—from the Foreword by Dr. Rudine Sims Bishop, Professor Emeritus, The Ohio State University

Drawing from her own lived experience, in this guide Dorr shines a light on some of the cultural values that exist across both rural and urban poverty, inviting teachers, librarians, and others who work with children from low-income families to see them in their cultural context and appreciate the values they bring to the classroom or library. She spotlights a range of books for children and teens that offer literary mirrors to low-income children, as well as windows to more economically privileged readers, enabling all young readers to celebrate our common humanity. And she also shares the work of ten authors and illustrators familiar with poverty, offering insights into the sources of their stories and the ways storytellers’ lived experience can influence their creative works and make their characters more authentic. You will discover

  • an introduction which explores what it’s like to grow up in generational poverty, including its long-term effects on children, the roles played by intersectional and institutional racism, the power of family, and how reading can act as powerful catalyst;
  • biographical sketches of Elizabeth Acevedo, Jason Reynolds, Cynthia Rylant, Kelly Yang, and other authors and illustrators;
  • inspiring profiles and books spanning age ranges, genres, and formats that chronicle the lives of Ruth Bader Ginsberg, Kareem Abdul-Jabbar, Sonia Sotomayor, John Lewis, Wilma Mankiller, and other people who were raised in generational poverty; and
  • four appendixes which spotlight even more stories of resilient individuals and fictional characters.
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Stigma Stories
Rhetoric, Lived Experience, and Chronic Illness
Molly Margaret Kessler
The Ohio State University Press, 2022
In Stigma Stories: Rhetoric, Lived Experience, and Chronic Illness, Molly Margaret Kessler focuses on ostomies and gastrointestinal conditions to show how stigma is nearly as central to living with chronic conditions as the conditions themselves. Drawing on a multi-year study that includes participant observations, interviews, and rhetorical engagement with public health campaigns, blogs, social media posts, and news articles, Stigma Stories advocates for a rhetorical praxiographic approach that is attuned to the rhetorical processes, experiences, and practices in which stigma is enacted or countered.

Engaging interdisciplinary conversations from the rhetoric of health and medicine, disability studies, narrative medicine, and sociology, Kessler takes an innovative look at how stigma functions on individual, interpersonal, and societal levels. In doing so, Kessler reveals how  stories and lived experiences have much to teach us not only about how stigma functions but also about how it can be dismantled.

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Surviving Suicidal Ideation
From Therapy to Spirituality and the Lived Experience
Gina Cavalier and Amelia Kelley
Swedenborg Foundation Publishers, 2024
A guide to help those who experience suicidal ideation heal and find peace.

Surviving Suicidal Ideation embarks on a profound journey through the underlying causes, stages, and powerful emotions that shape the experience of having suicidal thoughts. More importantly, it provides proven tools, exercises, and steps to curtail and heal this preventable condition. With sensitivity and clarity, Dr. Amelia Kelley and Gina Cavalier explore the interconnectedness of addiction, mental health, and trauma.

Using a unique combination of analytic and spiritual practices, mindfulness, cutting-edge brain therapy, and compassionate support, this book offers therapies and self-help techniques with corresponding exercises; hand-inked illustrations by Cavalier; a foreword by Thomas Moore, New York Times bestselling author of Care of the Soul; and an extensive list of resources.

As a public speaker, Cavalier focuses on memoir-style storytelling about living with suicidal ideation. Together, the authors present holistic approaches to suicide prevention and debunk prevalent myths. They also go beyond individual healing, emphasizing the importance of community and relationships. Ultimately, Surviving Suicidal Ideation provides a nonjudgmental guide that enables the reader to develop self-compassion and work toward a positive future filled with hope and resilience.
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When Time Warps
The Lived Experience of Gender, Race, and Sexual Violence
Megan Burke
University of Minnesota Press, 2019

An inquiry into the phenomenology of “woman” based in the relationship between lived time and sexual violence

 
Feminist phenomenologists have long understood a woman’s life as inhibited, confined, and constrained by sexual violence. In this important inquiry, author Megan Burke both builds and expands on this legacy by examining the production of normative womanhood through racist tropes and colonial domination. Ultimately, Burke charts a new feminist phenomenology based in the relationship between lived time and sexual violence.

By focusing on time instead of space, When Time Warps places sexualized racism at the center of the way “woman” is lived. Burke transports questions of time and gender outside the realm of the historical, making provocative new insights into how gendered individuals live time, and how their temporal existence is changed through particular experiences.

Providing a potent reexamination of the theory of Simone de Beauvoir—while also bringing to the fore important women of color theorists and engaging in the temporal aspects of #MeToo—When Time Warps makes a necessary, lasting contribution to our understanding of gender, race, and sexual violence.

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