Becoming an expert caregiver how structural flaws shape autism carework & community / Cara A. Chiaraluce.
| Author/creator | Chiaraluce, Cara A. |
| Format | Electronic |
| Publication Info | New Brunswick, New Jersey : Rutgers University Press, [2025] |
| Description | vi, 165 pages 23 cm |
| Supplemental Content | Full text available from Ebook Central - Academic Complete |
| Subjects |
| Series | Carework in a changing world |
| Contents | Autism complexities: competing paradigms & historical context -- Tracing transformation: the birth of the expert caregiver -- Making sense of difference: building the expert caregiver toolkit -- Transcending the private sphere: extending carework into the community -- Potentials and limits of expert caregiving: community carework & medicalization -- "I need some air down here and nobody is noticing:" caring about the expert caregiver. |
| Abstract | ""The hardest thing is dealing with the rest of the world. And we kind of accomodate our lives around that. But the rest of the world doesn't." These poignant words were spoken by Charlotte, a mother and primary caregiver of a five-year-old autistic boy, and her words reference the structural arragements of our world thta shape autism carework today. This book features the voices of 50 primary caregivers of autistic and neurodivergent childrenw ho illuminate the process through which lay women become expert caregivers to provide the best care for their children. Expert caregiving captures an intensification of traditional family carework - meeting dependents' financial, emotional, and physical needs - that transcends the walls of one's private home and family and challenges the strict boundaries between many worlds; lay and professional, family and work, private and public, medical and social, and individual and society. The process of becoming an expert caregiver spotlights several interesting paradoxes in sociological literature, particularly regarding gender, family, and medicalization, and often forgotten structural flaws in "the rest of the world." Throughout the chapters in this book, the expert caregiver is the one person who faces unbelievably daunting tasks of filling or reforming persistent institutional gaps, primarily in education and healthcare, and subverting ableist cultural norms. Without institutional support, answers to their questions, or prgamatic avenues to access resources, lay caregivers become the experts. Their trials and tribulations, especially when navigating the boundaries of professional/lay and private/public worlds, illuminate a type of carework that is increasingly relevant to a growing number of young families caring for neurodivergent, disabled, medically fragile, and/or chronically ill children. These stories offer a vivid picture of the often invisible complex challenges and structural forces that drive individuals to become expert caregivers in the first place"-- Provided by publisher. |
| Bibliography note | Includes bibliographical references (pages 149-160) and index. |
| Access restriction | Available only to authorized users. |
| Technical details | Mode of access: World Wide Web |
| Genre/form | Electronic books. |
| LCCN | 2024016313 |
| ISBN | 9781978831902 paperback |
| ISBN | 9781978831919 hardcover |
| ISBN | epub |
| ISBN |
Availability
| Library | Location | Call Number | Status | Item Actions |
|---|---|---|---|---|
| Electronic Resources | Access Content Online | ✔ Available |