Prefer print? Stop by the P-care clinic's book cart! You may check out a book using this mobile app or bring the book to the library; we will do the rest! Have a book recommendation? Let us know! Email: laurelg@upenn.edu
Penn Libraries has an extensive collection of print books and ebooks. Below is a selection of books and ebooks about people with disabilities in both medical, social, and other contexts.
Click in the "i" icon next to the items below to learn more about each book. These descriptions are provided by the publishers unless otherwise noted.
(EBOOK) A Practical Approach to Special Care in Dentistry by
A Practical Approach to Special Care in Dentistry Learn to treat dental patients with disabilities or who are medically compromised A Practical Approach to Special Care in Dentistry delivers a comprehensive and robust overview of special care dentistry reflecting the most common compromised clinical conditions dentists will regularly encounter. It discusses more than 50 topics based on real-world clinical cases focusing on two main areas: patients with disabilities and medically compromised patients. The book uses a problem-based learning approach and helps the reader to apply knowledge in a clinical case context. Each chapter contains a case report establishing the main risk factors relating to the provision of dental treatment. That is followed by a practical and realistic set of adaptations for the reader to follow to minimise the rate and severity of potential complications for their patient. The book also includes: A thorough introduction to patients with disabilities, including physical disabilities, like cerebral palsy and epilepsy, and cognitive impairments, like Down's Syndrome Comprehensive explorations of the treatment of medically compromised patients, like those with infectious diseases, endocrine diseases, hepatorenal disease, and cardiovascular disease Practical discussions of other special patient situations, like those with allergies, antiresorptive and antiangiogenic drugs, terminal patients, underhoused patients, and pregnant or breastfeeding patients Perfect for general dentists, undergraduate students of odontology, and graduate students of special care dentistry, A Practical Approach to Special Care in Dentistry is also a must-read resource for dental specialists in special care dentistry, hospital odontology, geriatric odontology, oral surgery, and dental hygienists.
(EBOOK) Dental Care for Children with Special Needs: A Clinical Guide by
Emphasizes a patient-centered approach to care
Provides a systematic framework for patient assessment and interaction with medical colleagues
Describes techniques for effective communication and behavioral strategies to improve treatment acceptance
Offers tips for achieving and maintaining oral health
Explains the role of pharmacological interventions in facilitating delivery of quality care
Dental Care for Children with Special Needs by
This concise manual offers best practice guidance on dental treatment of pediatric patients with special health care needs (CSHCN). The straightforward approaches described will enable clinicians to deliver high-quality, patient-centered care to children with intellectual and developmental disabilities. Readers will find up-to-date information on case-based treatment planning, alternative caries management strategies, the use of behavioral and pharmacological interventions to facilitate delivery of quality treatment, and a team approach to care. Practical clinical tips are provided on how to achieve and maintain oral health, including good oral hygiene and nutrition. A systematic framework for patient assessment and interaction with medical colleagues will assist readers in understanding when dental protocols must be altered. Other important topics include techniques for effective communication with CSHCN, behavioral strategies to improve treatment acceptance, the role of occupational therapy techniques, the sensory adapted dental environment, and the use protective stabilization.
Understanding and Management of Special Child in Paediatric Dentistry by
Section - 1 Introduction to Special Child. 1. Needs of a Special Child Section - 2.Mentally Challenged. 2. Mental Retardation 4. Epilepsy Section - 3.Physically Challenged 5. Hearing Impairments 6. Visual Impairments 7. Speech Impairments Section - 4.Medically Challenged. 8. Cardiovascular Disorders 9. Renal Disorders 10. Respiratory System 11. Gastrointestinal Disorders 12. Hematological Disorders 13. Endocrine and Metabolic Disorders 14. Liver Disorders and Hepatitis 15. Acquired Immune Deficiency Syndrome (AIDS) Section - 5.Genetically Challenged. 16. Down Syndrome 17. Marfan Syndrome 18. Pierre Robin Sequence. 19. Ectodermal Dysplasia 20. Cleidocranial Dysplasia 21. Crouzon Syndrome 22. Apert Syndrome 23. Klinefelter Syndrome 24. Treacher Collins Syndrome 25. Hemifacial Microsomia 26. Cleft Lip and Palate Section - 6.Emotionally Challenged. 27. Child Abuse and Neglect Section - 7.Learning Disabilities. 28. Autism 29. Attention Deficit Hyperactivity Disorder 30. Dyslexia Section - 8.Hospital Management. 31. Hospital Pediatric Dentistry Index
(EBOOK) Health Care for People with Intellectual and Developmental Disabilities Across the Lifespan by
This book provides a broad overview of quality health care for people with intellectual and developmental disabilities (IDD). It focuses on providing the reader a practical approach to dealing with the health and well-being of people with IDD in general terms as well as in dealing with specific conditions. In addition, it offers the reader a perspective from many different points of view in the health care delivery system as well as in different parts of the world. This is the 3rd , and much expanded edition, of a text that was first published in 1989 (Lea and Fibiger). The second edition was published in 2006 (Paul Brookes) and has been used as a formal required text in training programs for physicians, nurses and nurse practitioners as well as by administrators who are responsible for programs serving people with IDD. This book is considered the "Bible" in the field of health care for people with IDD since 1989 when the first edition came out.
Profound Intellectual and Multiple Disabilities by
Children and adults with profound and multiple learning disabilities (PMLD) are among the most marginalised people in society. They have some of the highest support needs and are most reliant on services. This accessible text presents and promotes current best practice regarding interventions to meet the complex health needs of a person with profound & multiple learning disabilities. Practical in focus, this text provides evidence-based guidance on meeting the complex needs of a person with PMLD. The text presents a range of complex health needs that a practitioner may face, such as communication, nutrition, epilepsy, vision and mobility. Each practice-focused chapter provides clear definitions of the condition, with current evidence-based best-practice supporting the intervention. Written by a team of professionals who have wide experience and interest in this subject area, this text will be invaluable for all those working with, and caring for those with profound and multiple learning disabilities.
Treating the Dental Patient with a Developmental Disorder by
Treating the Dental Patient with a Developmental Disorder provides a basic understanding of patients with developmental and intellectual disorders and offers help in communicating with and treating with developmental disabilities, including autism spectrum disorders, Down Syndrome, attention deficit, cerebral palsy, spina bifida, learning disabilities, and others. Presents descriptions of most common forms of developmental and intellectual disorders Provides practical methods of caring for patients with these disabilities, including how to guide and model behavior Offers practice management tips to accommodate patients with special needs, particularly those with autism Includes instructions to give caregivers for home oral therapy
Oral Health and Dental Care in the Ageing Population by
This book aims to provide the dental team with an improved understanding of management of the oral health needs of the ageing population, in whom increasing cognitive, medical and physical disabilities impact significantly on oral health and dental care needs. All significant aspects of caring for older people are covered. The nature and implications of changing demographics are explained and information provided on common medical co-morbidities and the impact of cognitive conditions, including dementia, on dental treatment. The changing pattern of dental disease in older people is clearly described, with explanation of the consequences of these changes for aspects of restorative dentistry, oral medicine, and oral surgery. Advice is given on considerations for dental treatment planning, including the importance of prevention and utilization of dental care professionals. Provision of care for older people under general anaesthesia or sedation and domiciliary care are also covered. The book is written by specialist practicing clinicians and delivers information in an accessible way with a person-centered approach.
(EBOOK) The Pocket Guide to Mouth and Dental Hygiene in Dementia Care by
The dental needs of people living with dementia are often overlooked, particularly in the care home and hospital community. It is challenging to maintain good standards of oral care with people living with dementia, and poor care can increase the fear and anxiety levels of those living with dementia. Very few dentists have the training that equips them with the specialist knowledge necessary to work with this population. This pocket guide sets out tailored advice for supporting the oral and dental needs of people living with dementia. It sets out straightforward models on providing effective preventative mouth care, spotting symptoms and what to do when problems occur. This concise handbook will help any dentists, care home staff, nurses and other health professionals working day to day with people with dementia.
(EBOOK) Treatment Dilemmas for Vulnerable Patients in Oral Health by
This book equips the reader with a sound understanding of the treatment of neglected and vulnerable patients in the dental office. It offers a comprehensive multidisciplinary approach to atraumatic carious treatment, minimal intervention dentistry, TMJ affections and nutritional consequences. Maintaining proper oral health includes managing of oral hygiene, healthy diet and seeking for a treatment when needed. Untreated dental disease can have a significant adverse impact on the health, wellbeing and quality of life. This book helps practitioners to understand and address the needs of dental neglected adults and children, and guide them through prevention procedures, diagnostics and treatment planning. Important techniques like physiologic impression for removable denture, single crown impression, digital planning and prosthodontic bridges are explained, and socio-demographic and economic changes in Oral Health are discussed. The comprehensive coverage of the topic and the evidence based references make this book a must have for dental practitioners.
(EBOOK) Improving Access to Oral Health Care for Vulnerable and Underserved Populations by
Access to oral health care is essential to promoting and maintaining overall health and well-being, yet only half of the population visits a dentist each year. Poor and minority children are less likely to have access to oral health care than are their nonpoor and nonminority peers. Older adults, people who live in rural areas, and disabled individuals, uniformly confront access barriers, regardless of their financial resources. The consequences of these disparities in access to oral health care can lead to a number of conditions including malnutrition, childhood speech problems, infections, diabetes, heart disease, and premature births. Improving Access to Oral Health Care for Vulnerable and Underserved Populations examines the scope and consequences of inadequate access to oral health services in the United States and recommends ways to combat the economic, structural, geographic, and cultural factors that prevent access to regular, quality care. The report suggests changing funding and reimbursement for dental care; expanding the oral health work force by training doctors, nurses, and other nondental professionals to recognize risk for oral diseases; and revamping regulatory, educational, and administrative practices. It also recommends changes to incorporate oral health care into overall health care. These recommendations support the creation of a diverse workforce that is competent, compensated, and authorized to serve vulnerable and underserved populations across the life cycle. The recommendations provided in Improving Access to Oral Health Care for Vulnerable and Underserved Populations will help direct the efforts of federal, state, and local government agencies; policy makers; health professionals in all fields; private and public health organizations; licensing and accreditation bodies; educational institutions; health care researchers; and philanthropic and advocacy organizations.
(EBOOK) The smile gap: oral health and social inequality by
As recently as fifty years ago most people expected to lose their teeth as they aged. Few children benefited from braces to straighten their teeth, and cosmetic procedures to change the appearance of smiles were largely unknown. Today, many Canadians enjoy straight, white teeth and far more of them are keeping their teeth for the entirety of their lives. Yet these advances have not reached everyone.The Smile Gap examines the enormous improvements that have taken place over the past century. The use of fluorides, emphasis on toothbrushing, the rise of cosmetic dentistry, and better access to dental care have had a profound effect on the oral health and beauty of Canadians. Yet while the introduction of employer-provided dental insurance in the 1970s has allowed for regular visits to the dentist for many people, a significant number of Canadians still lack access to good oral health care, especially disabled Canadians, those on social assistance, the working poor, the elderly, and new immigrants. At the same time, an attractive smile has become increasingly important in the workplace and in relationships. People with damaged and missing teeth are at a substantial disadvantage, not just because of the pain and suffering caused by poor oral health, but because we live in a society that prizes good teeth and warm smiles.The first history of oral health in Canada, The Smile Gap reveals that despite the gains made, too many Canadians go without any dental care, with damaging consequences for their oral health, general physical health, and self-image. To complete our health care system, it is time to close the gap.
(EBOOK) Ergonomics in the Dental Office by
Helps everyone on the dental team work in a more comfortable and less painful way Dental health providers commonly struggle with chronic back pain, carpal tunnel syndrome, muscle tension, strained eyes, and other work-related musculoskeletal problems. Ergonomics in the Dental Office provides clear guidance on alleviating or eliminating the pain and discomfort caused by strains put on the body in daily practice. This easy-to-read book explains the principles of ergonomics, identifies specific causes of musculoskeletal problems, and presents simple--yet effective--techniques to address the physical stresses that might be occurring in the dental office. Concise, highly visual chapters demonstrate correct postures, clock positions, instrument transfer, head and neck placement, instrumentation techniques, office design, and more. The author emphasizes the importance of daily exercises, rest breaks, and disciplines that relieve both physical and emotional stress such as yoga and Tai Chi. Topics include occupational health issues and research, treating disabled patients, developing ergonomic awareness, seat positioning for tall and short operators, integrated intervention planning, and signs and symptoms of musculoskeletal disorders. Presents ways to improve body positioning and instrumentation techniques, including basic ergonomic principles of proper four-handed dentistry Discusses exercises to reduce stress and reduce muscle fatigue, such as Pilates, free weights, and aquatic activities Covers all key aspects of ideal dental office ergonomics, including furniture, equipment, office layout and design, and practice assessment Designed to address a problem all dental professionals face, Ergonomics in the Dental Office is an invaluable book for dentists, dental hygienists, dental assistants, and dental students and trainees.
(EBOOK) Evidence-Based Implant Dentistry and Systemic Conditions by
Evidence-based Implant Dentistry and Systemic Conditions provides essential information on the osseointegration and survival of dental implants in medically challenged patients. Aggregates the major research on the impact of systemic conditions on implant therapy success Discusses a range of conditions, including oral and systemic cancers, AIDS, osteonecrosis, arthritis, and more Provides clinical recommendations for every condition listed Compiles studies from indexed databases such as PubMed, MEDLINE, ISI web of knowledge, Scopus, and EMBASE
(EBOOK) The ADA practical guide to Section 1557 of the Affordable Care Act by
Section 1557 is the nondiscrimination provision of the Affordable Care Act (ACA). This brief guide explains Section 1557 in more detail and what your practice needs to do to meet the requirements of this federal law. Includes sample notices of nondiscrimination, as well as taglines translated for the top 15 languages by state.
Little and Falace's Dental Management of the Medically Compromised Patient by
Little and Falace's Dental Management of the Medically Compromised Patient, 10th Edition, is thoroughly revised to provide the information needed to assess common problems and make safe dental management decisions. This new edition contains revised content on Cancer and Women's Health and includes an enhanced ebook plus patient-based practice questions with print purchase. Also, each chapter features informative illustrations and well-organized tables to provide you with in-depth details and overall summaries required for understanding and applying medical concepts in dentistry. NEW! Thoroughly revised content provides the most current, evidence-based information you need to make dental management decisions. UPDATED! Information correlating to the revised INBDE exam prepares you for the boards. NEW! An ebook version is included with print purchase. The ebook allows you to access all the text, figures, and references, with the ability to search, customize content, make notes and highlights, and have content read aloud. Plus, patient-based questions are included. UPDATED! Revised coverage of Women's Health addresses issues specific to women that can impact dental management. NEW! Completely revised chapter on Cancer discusses essential considerations for the oral care of these patients. NEW! Key Points at the beginning of each chapter highlight important content to guide study efforts.
Behavioral Dentistry by
Behavioral Dentistry, Second Edition, surveys the vast and absorbing topic of the role of behavioral science in the study and clinical practice of dentistry. An understanding of social sciences has long been a central part of dental education, and essential for developing a clinician's appreciation of human behavior as it affects efficient dental treatment. This book gathers together contributions from leading experts in each of the major subspecialties of behavioral dentistry. Its aim is not merely to provide the student and clinician with a comprehensive review of the impressive literature or discussion of the theoretical background to the subject, but also with a practical guide to adapting the latest techniques and protocols and applying them to day-to-day clinical practice. This second edition of Behavioral Dentistry discusses biobehavioral processes, including the psychobiology of inflammation and pain, oral health and quality of life, saliva health, and hypnosis in dentistry. The book goes on to examine anxiety, fear, and dental and chronic orofacial pain, and then reviews techniques for designing and managing behavior change. It concludes with a section on professional practice, including care of special needs, geriatric, and diabetic patients, and interpersonal communication in dental education.
Ergonomics in the Dental Office by
Helps everyone on the dental team work in a more comfortable and less painful way Dental health providers commonly struggle with chronic back pain, carpal tunnel syndrome, muscle tension, strained eyes, and other work-related musculoskeletal problems. Ergonomics in the Dental Office provides clear guidance on alleviating or eliminating the pain and discomfort caused by strains put on the body in daily practice. This easy-to-read book explains the principles of ergonomics, identifies specific causes of musculoskeletal problems, and presents simple--yet effective--techniques to address the physical stresses that might be occurring in the dental office. Concise, highly visual chapters demonstrate correct postures, clock positions, instrument transfer, head and neck placement, instrumentation techniques, office design, and more. The author emphasizes the importance of daily exercises, rest breaks, and disciplines that relieve both physical and emotional stress such as yoga and Tai Chi. Topics include occupational health issues and research, treating disabled patients, developing ergonomic awareness, seat positioning for tall and short operators, integrated intervention planning, and signs and symptoms of musculoskeletal disorders. Presents ways to improve body positioning and instrumentation techniques, including basic ergonomic principles of proper four-handed dentistry Discusses exercises to reduce stress and reduce muscle fatigue, such as Pilates, free weights, and aquatic activities Covers all key aspects of ideal dental office ergonomics, including furniture, equipment, office layout and design, and practice assessment Designed to address a problem all dental professionals face, Ergonomics in the Dental Office is an invaluable book for dentists, dental hygienists, dental assistants, and dental students and trainees.
(EBOOK) A Practical Approach to Special Care in Dentistry by
A Practical Approach to Special Care in Dentistry Learn to treat dental patients with disabilities or who are medically compromised A Practical Approach to Special Care in Dentistry delivers a comprehensive and robust overview of special care dentistry reflecting the most common compromised clinical conditions dentists will regularly encounter. It discusses more than 50 topics based on real-world clinical cases focusing on two main areas: patients with disabilities and medically compromised patients. The book uses a problem-based learning approach and helps the reader to apply knowledge in a clinical case context. Each chapter contains a case report establishing the main risk factors relating to the provision of dental treatment. That is followed by a practical and realistic set of adaptations for the reader to follow to minimise the rate and severity of potential complications for their patient. The book also includes: A thorough introduction to patients with disabilities, including physical disabilities, like cerebral palsy and epilepsy, and cognitive impairments, like Down's Syndrome Comprehensive explorations of the treatment of medically compromised patients, like those with infectious diseases, endocrine diseases, hepatorenal disease, and cardiovascular disease Practical discussions of other special patient situations, like those with allergies, antiresorptive and antiangiogenic drugs, terminal patients, underhoused patients, and pregnant or breastfeeding patients Perfect for general dentists, undergraduate students of odontology, and graduate students of special care dentistry, A Practical Approach to Special Care in Dentistry is also a must-read resource for dental specialists in special care dentistry, hospital odontology, geriatric odontology, oral surgery, and dental hygienists.
A Practical Approach to Special Care in Dentistry by
A Practical Approach to Special Care in Dentistry Learn to treat dental patients with disabilities or who are medically compromised A Practical Approach to Special Care in Dentistry delivers a comprehensive and robust overview of special care dentistry reflecting the most common compromised clinical conditions dentists will regularly encounter. It discusses more than 50 topics based on real-world clinical cases focusing on two main areas: patients with disabilities and medically compromised patients. The book uses a problem-based learning approach and helps the reader to apply knowledge in a clinical case context. Each chapter contains a case report establishing the main risk factors relating to the provision of dental treatment. That is followed by a practical and realistic set of adaptations for the reader to follow to minimise the rate and severity of potential complications for their patient. The book also includes: A thorough introduction to patients with disabilities, including physical disabilities, like cerebral palsy and epilepsy, and cognitive impairments, like Down's Syndrome Comprehensive explorations of the treatment of medically compromised patients, like those with infectious diseases, endocrine diseases, hepatorenal disease, and cardiovascular disease Practical discussions of other special patient situations, like those with allergies, antiresorptive and antiangiogenic drugs, terminal patients, underhoused patients, and pregnant or breastfeeding patients Perfect for general dentists, undergraduate students of odontology, and graduate students of special care dentistry, A Practical Approach to Special Care in Dentistry is also a must-read resource for dental specialists in special care dentistry, hospital odontology, geriatric odontology, oral surgery, and dental hygienists.
Special and Medically Compromised Patients in Dentistry by 
Special Care Dentistry by
Most people with a mild or moderate disability do not require specialist dental care and can receive care in mainstream primary dental services. However, the clinical experience of dental graduates in the delivery of Special Care Dentistry can be limited. This book provides the dental team with knowledge, information and practical tips that will facilitate its delivery. Book jacket.
Special Care Dentistry, an Issue of Dental Clinics of North America by
In this issue of Dental Clinics, guest editor Dr. Stephanie M. Munz brings her considerable expertise to the topic of Special Care Dentistry. In this issue, top experts in the field focus on the provision of dental care services for people with cognitive, physical, medical, or developmental conditions which can preclude them from receiving routine dental care. Key topics include patients with cleft lip, orofacial pain, and neurosensory disorders, in addition to teledentistry, mentorship, advocacy, and the impact of the COVID pandemic. Contains 11 relevant, practice-oriented topics including dental materials in special care dentistry; the pandemic impact on oral health of patients with special healthcare needs; teledentistry for patient-centered screening and assessment; oral health advocacy over the lifespan for the patient with special healthcare needs; interprofessional collaboration for the patient with special healthcare needs; and more. Provides in-depth clinical reviews on special care dentistry, offering actionable insights for clinical practice. Presents the latest information on this timely, focused topic under the leadership of experienced editors in the field. Authors synthesize and distill the latest research and practice guidelines to create clinically significant, topic-based reviews.
Special Care in Dentistry by
This title is directed primarily towards health care professionals outside of the United States. It is comprehensive and concise information source on special care dentistry by the foremost authority on the subject in the UK.
Dental Care for Children with Special Needs by
This concise manual offers best practice guidance on dental treatment of pediatric patients with special health care needs (CSHCN). The straightforward approaches described will enable clinicians to deliver high-quality, patient-centered care to children with intellectual and developmental disabilities. Readers will find up-to-date information on case-based treatment planning, alternative caries management strategies, the use of behavioral and pharmacological interventions to facilitate delivery of quality treatment, and a team approach to care. Practical clinical tips are provided on how to achieve and maintain oral health, including good oral hygiene and nutrition. A systematic framework for patient assessment and interaction with medical colleagues will assist readers in understanding when dental protocols must be altered. Other important topics include techniques for effective communication with CSHCN, behavioral strategies to improve treatment acceptance, the role of occupational therapy techniques, the sensory adapted dental environment, and the use protective stabilization.
(EBOOK) Disability by
This volume offers a rare mix of interpretive chapters and primary sources that will be of value to anyone interested in learning about important disability-related issues and exploring the perspectives of disabled people.Disability has become a human rights and social justice issue that should concern all Americans. Access to safe, affordable, and effective health care, access to safe and affordable housing, access to reliable and efficient public transportation, and the ability to work and participate freely in the community are central to disability justice movements. Unlike encyclopedias or biographical dictionaries that only offer brief accounts of key topics, people, events, and organizations, Disability: A Reference Handbook provides important interpretive and analytical frameworks and meaningful primary evidence. The book opens with a chapter dedicated to the history of disability in the United States, placing 21st-century issues and concerns within their contexts. The next chapter explores important controversies and questions related to disability. The third chapter brings diverse voices to the topic, and the fourth chapter offers valuable profiles of key people and organizations. The remaining chapters provide valuable reference tools that will help readers to explore topics in more depth and to engage in independent research.
(EBOOK) Disability: Functional Diversity by
Disability can be transient, partly or permanent and take many forms and shapes. Disability can be a mental or physical illness or a condition that affects a major life function over the long term. Disability is a term also used in the labor market and worker compensation field to describe any lasting impairment that remains after a worker has been treated and allowed time to recover. A permanent disability could be as severe as the loss of an eye or as moderate as a broken leg that healed leaving the inability to walk normally. In this book we have gathered research on various aspects of disability and rehabilitation from Spain, United States of America, Brazil, Singapore, Cyprus, Malaysia, Italy, Japan and Manipal, which we hope will be of interest to the reader.
(EBOOK) Keywords for disability studies by
Keywords for Disability Studies aims to broaden and define the conceptual framework of disability studies for readers and practitioners in the field and beyond. The volume engages some of the most pressing debates of our time, such as prenatal testing, euthanasia, accessibility in public transportation and the workplace, post-traumatic stress, and questions about the beginning and end of life. Each of the 60 essays in Keywords for Disability Studies focuses on a distinct critical concept, including "ethics," "medicalization," "performance," "reproduction," "identity," and "stigma," among other.
(EBOOK) Disability rights, benefits, and support services sourcebook by
Basic consumer health information about different types of disabilities, barriers faced by people with disabilities, disability-rights movement, Americans with Disabilities Act, right to education, housing, employment, supplemental security income, marketplace application, voting rights, access to medical care and trasportation, and offers guidance on benefits for adults and children, social security disability insurance, tax exemptions, covergage options, and compensations and financial independence, along with facts about rehabilative and assitive technology and resource for additional help and information
Disability Rights, Benefits, and Support Services Sourcebook by
"Provides basic consumer health information about barriers faced by people with disabilities, disability rights movement, right to education, housing, employment, voting, access to medical care, and transportation, as well as Social Security disability insurance, tax exemption, coverage option, and compensation. Includes directory of organizations for people with disabilities"--Provided by publisher"--
(EBOOK) Disability and Aging by
What is the lived experience of previously healthy older adults as they face disability in late life, and how is disability assimilated in their identity? How do prevailing practices facilitate--or limit--options for elders living with new disabilities? To address these questions, Jeffrey Kahana and Eva Kahana uniquely synthesize disability and gerontological perspectives to explore both the unfolding challenges of aging and the practices and policies that can enhance the lives of older adults.
(EBOOK) Disability in America by
Disability in America presents a five-prong strategy for reducing the incidence and prevalence of disability as well as its personal, social, and economic consequences. Although the preferred goal is to avoid potentially disabling conditions, the authoring committee focuses on the need to prevent or reverse the progression that leads to disability and reduced quality of life in persons with potentially disabling conditions. Calling for a coherent national program to focus on prevention, the committee sets forth specific recommendations for federal agencies, state and local programs, and the private sector. This comprehensive agenda addresses the need for improved methods for collecting disability data, specific research questions, directions for university training, reform in insurance coverage, prenatal care, vocational training, and a host of other arenas for action.
(EBOOK) Black Disability Politics by
In Black Disability Politics Sami Schalk explores how issues of disability have been and continue to be central to Black activism from the 1970s to the present. Schalk shows how Black people have long engaged with disability as a political issue deeply tied to race and racism. She points out that this work has not been recognized as part of the legacy of disability justice and liberation because Black disability politics differ in language and approach from the mainstream white-dominant disability rights movement. Drawing on the archives of the Black Panther Party and the National Black Women's Health Project alongside interviews with contemporary Black disabled cultural workers, Schalk identifies common qualities of Black disability politics, including the need to ground public health initiatives in the experience and expertise of marginalized disabled people so that they can work in antiracist, feminist, and anti-ableist ways. Prioritizing an understanding of disability within the context of white supremacy, Schalk demonstrates that the work of Black disability politics not only exists but is essential to the future of Black liberation movements.
(EBOOK) Disability Pride by
An eye-opening portrait of the diverse disability community as it is today, and how disability attitudes, activism, and representation have evolved since the passage of the Americans with Disabilities Act (ADA) In Disability Pride, disabled journalist Ben Mattlin weaves together interviews and reportage to introduce a cavalcade of individuals, ideas, and events in engaging, fast-paced prose. He traces the generation that came of age after the ADA reshaped America, and how it is influencing the future. He documents how autistic self-advocacy and the neurodiversity movement upended views of those whose brains work differently. He lifts the veil on a thriving disability culture--from social media to high fashion, Hollywood to Broadway--showing how the politics of beauty for those with marginalized body types and facial features is sparking widespread change. He also explores the movement's shortcomings, particularly the erasure of nonwhite and LGBTQIA+ people that helped give rise to Disability Justice. He delves into systemic ableism in health care, the right-to-die movement, institutionalization, and the scourge of subminimum-wage labor that some call legalized slavery. And he finds glimmers of hope in how disabled people never give up their fight for parity and fair play. Beautifully written, without anger or pity, Disability Pride is a revealing account of an often misunderstood movement and identity, an inclusive reexamination of society's treatment of those it deems different.
(EBOOK) A Comprehensive Guide to Intellectual and Developmental Disabilities by
The most complete book available on children and adults with intellectual and developmental disabilities, this core textbook is perfect for any course focused on disabilities. No other text on this subject is all of these things at once: broad and deep, with thorough, up-to-date information on intervention, education, family roles, health issues, specific disabilities such as Down syndrome and autism, and much more lifespan-focused, with topics ranging from genetics and development to aging issues immediately applicable, presenting not just the facts but also practical, real-world advice on working with people with disabilities and meeting their individual needs multidisciplinary, blending the research and personal experiences of more than 70 world-renowned authors from diverse fields Learning objectives, instructive case stories, stimulating questions for reflection, and key Internet resources help make this a user-friendly textbook -- one that students will refer to for years to come. With this thorough compendium of information, insights, and answers, future educators, social workers, researchers, and clinicians will know what to do and how to do it once they start their work with people with disabilities.
(EBOOK) Crip Genealogies by
The contributors to Crip Genealogies reorient the field of disability studies by centering the work of transnational feminism, queer of color critique, and trans scholarship and activism. They challenge the white, Western, and Northern rights-based genealogy of disability studies, showing how a single coherent narrative of the field is a mode of exclusion that relies on logics of whiteness and imperialism. The contributors examine how disability justice activists work in concert with other social justice projects, explore crip environments, create alternate disciplinary genealogies, and reject notions of the model minority. Throughout, they demonstrate how the mandate for a single genealogy of the discipline whitewashes disability and continues forms of violence. By cripping disability studies, the contributors allow for divergent histories, the coexistence of anti-ableist and antiracist theorizing, and a radically just and capacious understanding of disability. Contributors. Suzanne Bost, Mel Y. Chen, Sony Coráñez Bolton, Natalia Duong, Lezlie Frye, Magda García, Alison Kafer, Eunjung Kim, Yoo-suk Kim, Kateřina Kolářová, James Kyung-Jin Lee, Stacey Park Milbern, Julie Avril Minich, Tari Young-Jung Na, Therí A. Pickens, Leah Lakshmi Piepzna-Samarasinha, Jasbir K. Puar, Sami Schalk, Faith Njahîra Wangarî
(EBOOK) Crip Negativity by
Imagining anti-ableist liberation beyond the rubrics of access and inclusion In the thirty years since the Americans with Disabilities Act was signed into law, the lives of disabled people have not improved nearly as much as activists and politicians had hoped. In Crip Negativity, J. Logan Smilges shows us what's gone wrong and what we can do to fix it. Leveling a strong critique of the category of disability and liberal disability politics, Smilges asks and imagines what horizons might exist for the liberation of those oppressed by ableism--beyond access and inclusion. Inspired by models of negativity in queer studies, Black studies, and crip theory, Smilges proposes that bad crip feelings might help all of us to care gently for one another, even as we demand more from the world than we currently believe to be possible. Forerunners: Ideas First is a thought-in-process series of breakthrough digital publications. Written between fresh ideas and finished books, Forerunners draws on scholarly work initiated in notable blogs, social media, conference plenaries, journal articles, and the synergy of academic exchange. This is gray literature publishing: where intense thinking, change, and speculation take place in scholarship.
(EBOOK) Autism : Your Questions Answered by
Research suggests that about 1% of the world's population is on the autism spectrum. Discover the answers to common questions about living with neurodiversity. Part of the Q&A Health Guides series, this book offers a broad introduction to autism spectrum disorder (ASD). The book's 47 questions cover what ASD is and its common characteristics, the biological and environmental factors that may lead to ASD, how autism is diagnosed and managed, and how those living with ASD can reach their full potential. Autism: Your Questions Answered addresses these and other topics in a way that both celebrates neurodiversity and acknowledges the many challenges that those with ASD face. Augmenting the main text, a collection of 5 case studies illustrate key concepts and issues through relatable stories and insightful recommendations. The common misconceptions section at the beginning of the volume dispels 5 long-standing and harmful myths about ASD, directing readers to additional information in the text. The glossary defines terms that may be unfamiliar to readers, while the directory of resources curates a list of the most useful books, websites, and other materials. Finally, whether they're looking for more information about this subject or any other health-related topic, readers can turn to the guide to health literacy section for practical tools and strategies for finding, evaluating, and using credible sources of health information both on and off the Internet.
(EBOOK) Deaf Culture by
A contemporary and vibrant Deaf culture is found within Deaf communities, including Deaf Persons of Color and those who are DeafDisabled and DeafBlind. Taking a more people-centered view, the second edition of Deaf Culture: Exploring Deaf Communities in the United States critically examines how Deaf culture fits into education, psychology, cultural studies, technology, and the arts. With the acknowledgment of signed languages all over the world as bona fide languages, the perception of Deaf people has evolved into the recognition and acceptance of a vibrant Deaf culture centered around the use of signed languages and the communities of Deaf peoples. Written by Deaf and hearing authors with extensive teaching experience and immersion in Deaf cultures and signed languages, Deaf Culture fills a niche as an introductory textbook that is more inclusive, accessible, and straightforward for those beginning their studies of the Deaf-World. New to the Second Edition A new co-author, Topher González Ávila, MA Two new chapters! Chapter 7 "Deaf Communities Within the Deaf Community" highlights the complex variations within this community Chapter 10 "Deaf People and the Legal System: Education, Employment, and Criminal Justice" underscores linguistic and access rights The remaining chapters have been significantly updated to reflect current trends and new information, such as: Advances in technology created by Deaf people that influence and enhance their lives within various national and international societies Greater emphasis on different perspectives within Deaf culture Information about legal issues and recent political action by Deaf people New information on how Deaf people are making breakthroughs in the entertainment industry Addition of new vignettes, examples, pictures, and perspectives to enhance content interest for readers and facilitate instructor teaching Introduction of theories explained in a practical and reader-friendly manner to ensure understanding An updated introduction to potential opportunities for professional and informal involvement in ASL/Deaf culture with children, youth, and adults Key Features Strong focus on including different communities within Deaf cultures Thought-provoking questions, illustrative vignettes, and examples Theories introduced and explained in a practical and reader-friendly manner
(EBOOK) Disability and Identity: Negotiating Self in a Changing Society by
Choice Outstanding Academic Book! Rosalyn Darling offers a sweeping examination of disability and identity, parsing the shifting forces that have shaped individual and societal understandings of ability and impairment across time. Darling focuses on the relationship between societal views and the self-conceptions of people with mental and physical impairments. She also illuminates the impact of the disability rights movement, life-course dynamics, and race and gender in creating a diversity of disability identities. Her seminal work reveals the remarkable resilience of individuals in the face of profound social and material barriers, at the same time that it enhances our understanding of the construction and experience of "difference" in our changing society.
(EBOOK) Disability and Labour in the Twentieth Century by
This volume puts disability and labour at the centre of historical enquiry. It offers fresh perspectives on the history of disability and labour in the twentieth century and highlights the need to address the topic beyond regional boundaries. Bringing together historians and disability scholars from a variety of disciplines and regions, the chapters investigate various historical settings, ranging from work cooperatives to disability associations and informal workplaces, and analyse multiple meanings of labour in different political and economic systems through the lens of disability. The book's contributors demonstrate that the nexus between labour and disability in modern, industrialised societies resists easy generalisations, as marginalisation and integration were often two sides of the same coin: While the experience of many disabled people has been marked by exclusion from mainstream production, labour also became a vehicle for integration and emancipation. Addressing one of the research gaps of the disability history field, which has long been dominated by British and North American perspectives, the book sheds light on less-studied examples from Scandinavian countries and Eastern Europe including Czechoslovakia, Poland, the Soviet Union, Bulgaria and Romania. Cutting across national, cultural and class divides the volume provides a springboard for reflections on common experiences of disability and labour during the twentieth century. It will be of interest to all scholars and students working in the field of disability studies, sociology and labour history.
(EBOOK) Disability in Wonderland by
Adult-directed utopian fiction has historically rejected depictions of persons with disabilities, underrepresenting a community that comprises an estimated 15% of the world's population. From the earliest stories of utopias written for and about children, however, persons with disabilities have been included in abundance, and are central to classic narratives like The Wizard of Oz and Winnie the Pooh. In a perfect world centered on children and their caretakers, these works argue, characters with a diverse range of bodies and minds must flourish. Spanning from Lewis Carroll's 1865 Alice in Wonderland to Jordan Peele's 2019 film Us, this examination of the wonderland demonstrates the role that bodily and neurological diversity plays in an ever-popular subgenre.
(EBOOK) Emancipatory and Participatory Research for Emerging Educational Researchers by
Emancipatory and Participatory Research for Emerging Educational Researchers is a concise fundamental guide on two related models of education research--emancipatory and participatory. In addition to providing an introduction to these research models, this book also studies them through the lens of critical practice as well as pure research and provides case studies as examples. It highlights a variety of data collection techniques that are used in education research, from visual methods to interviews, and the strategies researchers apply to ensure the research process involves and benefits the participants. Emancipatory and Participatory Research for Emerging Educational Researchers functions as a useful "how-to" guide for first-time and less experienced researchers. Furthermore, it highlights not only how participatory research is by its nature emancipatory but also the overlaps between the two models' approach to data collection.
(EBOOK) Embodied Injustice by
Black people and people with disabilities in the United States are distinctively disadvantaged in their encounters with the health care system. These groups also share harsh histories of medical experimentation, eugenic sterilizations, and health care discrimination. Yet the similarities in inequities experienced by Black people and disabled people and the harms endured by people who are both Black and disabled have been largely unexplored. To fill this gap, Embodied Injustice uses an interdisciplinary approach, weaving health research with social science, critical approaches, and personal stories to portray the devastating effects of health injustice in America. Author Mary Crossley takes stock of the sometimes-vexed relationship between racial justice and disability rights advocates and interrogates how higher disability prevalence among Black Americans reflects unjust social structures. By suggesting reforms to advance health equity for disabled people, Black people, and disabled Black people, this book lays a crucial foundation for intersectional, cross-movement advocacy to advance health justice in America.
(EBOOK) Geographies of Disability by
This book explains how space, place and mobility have shaped the experiences of disabled people both in the past and in contemporary societies. The key features of this insightful study include: * a critical appraisal of theories of disability and a new disability model * case studies to explore how the transition to capitalism disadvantaged disabled people * an exploration of the Western city and the policies of community care and accessibility regulation. Brendan Gleeson presents an important contribution to the major policy debates on disability in Western societies and offers new considerations for the broader debates on embodiment and space within Geography.
(EBOOK) Global Histories of Disability, 1700-2015 by
This book offers a global angle to Disability History by exploring global locations as disparate as the Caribbean, Kenya, Mauritius, Natal and Poland as well as taking new approaches to Britain and the US. Global Histories of Disability seeks to address issues including colonialism, disability, the body, forced labour and indigeneity. A further key issue that reoccurs throughout the volume is the specificity of place. With several chapters examining the Global South, such work challenges the implicit tendency to assume that the western experience of disability is a universal one. The volume intends to do more than add new case studies to our knowledge about disability in the modern period, it intends to use the insights gained from examining disparate global sites to think more about the global histories of disability both empirically and theoretically. Issues addressed by different chapters include colonialism, imperialism, disability, deafness, the body, enslavement, labour and indigeneity. Different chapters also use economic, cultural, legal and political frameworks to explore issues of disability across a range of global locations. This volume is essential for students, scholars and researchers alike interested in world and international history.
(EBOOK) Just Care by
Just Care is Akemi Nishida's thoughtful examination of care injustice and social justice enabled through care. The current neoliberal political economy has turned care into a business opportunity for the healthcare industrial complex and a mechanism of social oppression and control. Nishida analyzes the challenges people negotiate whether they are situated as caregivers, receivers, or both. Also illuminated is how people with disabilities come together to assemble community care collectives and bed activism (resistance and visions emerging from the space of bed) to reimagine care as a key element for social change. The structure of care, Nishida writes, is deeply embedded in and embodies the cruel social order--based on disability, race, gender, migration status, and wealth--that determines who survives or deteriorates. Simultaneously, many marginalized communities treat care as the foundation of activism. Using interviews, focus groups, and participant observation with care workers and people with disabilities, Just Care looks into lives unfolding in the assemblage of Medicaid long-term care programs, community-based care collectives, and bed activism. Just Care identifies what care does, and asks: How can we activate care justice or just care where people feel cared affirmatively and care being used for the wellbeing of community and for just world making?
(EBOOK) Midgetism : the exploitation and discrimination of people with dwarfism by
There exist problematic attitudes and beliefs about dwarfism that have rarely been challenged, but continue to construct people with dwarfism as an inferior group within society. This book introduces the critical term ‘midgetism’, which the author has coined, to demonstrate that the socio-cultural discrimination people with dwarfism experience is influenced by both heightism and disablism.
As a result, it unpacks and challenges the problematic social assumptions that reinforce midgetism within society, including the acceptability of ‘midget entertainment’ and ‘non-normate space’, to demonstrate how particular spaces can either aid in reinforcing or challenge midgetism.
Drawing on the tripartite model of disability, this book demonstrates how midget entertainment is framed as a non-normative positivism, which makes it an acceptable form of employment. Using autocritical discourse analysis, the book exposes, examines and responds to excuses that are used to reinforce midgetism, thus critiquing the numerous beliefs influenced by cultural representations of dwarfism, such as people with dwarfism being acceptable figures of entertainment.
It will be of interest to all scholars and students of disability studies, social history, sociology and cultural geography
(EBOOK) Other-Person-ness and the Person with Profound Disabilities by
Many people think that profound disability presents us with a real problem, often because it seems difficult to connect with someone who does not seem to think or act like us. Positioning profound disability in this way immediately sets up a 'them' and 'us', where the person with profound disability becomes the problematic 'other'. Attempts to bridge the 'them' and 'us' risk reducing everyone to the same where disability is not taken seriously. In contrast to a 'them' and 'us', and negative connotations of the other found in the existentialist philosophies of writers like Sartre and Beauvoir, Pia Matthews argues for a return to a positive view of the other. One positive approach to the other, based on an ethics of relationship as championed by Levinas, seems to mitigate the other-ness of profound disability. However, this still makes the person with profound disability dependent on the ethical concern of the more powerful other. Instead, this book argues for return to a personalist philosophy of being offered by Mounier, Marcel, and Wojtyła, and deepened by participation, belonging, and the possibility of contributing to the good of all. This deepened philosophy of being gives a more solid foundation for people who are especially at the mercy of others. It will be of interest to all scholars and students of disability studies, philosophy and anthropology.
(EBOOK) The Disability Studies Reader by
The fifth edition of The Disability Studies Reader addresses the post-identity theoretical landscape by emphasizing questions of interdependency and independence, the human-animal relationship, and issues around the construction or materiality of gender, the body, and sexuality. Selections explore the underlying biases of medical and scientific experiments and explode the binary of the sound and the diseased mind. The collection addresses physical disabilities, but as always investigates issues around pain, mental disability, and invisible disabilities as well. Featuring a new generation of scholars who are dealing with the most current issues, the fifth edition continues the Reader's tradition of remaining timely, urgent, and critical.
(EBOOK) The Oxford handbook of philosophy and disability by
This Handbook introduces philosophers, as well as other scholars in the humanities and social sciences, to one of the most dynamic new areas of philosophical inquiry. Disability raises some of the deepest conceptual and normative issues about human embodiment and well-being; dignity, respect, justice and equality; and personal and social identity. But it also raises pressing practical questions for educational, health, reproductive, and technology policy, and confronts controversial questions about the scope and direction of the human and civil rights movements. The Handbook addresses these issues and more, with contributions from some of the most prominent philosophers in the field. The clarity it brings to these discussions demonstrates fully the continued centrality and importance of philosophical inquiry.
Ableism: the Causes and Consequences of Disability Prejudice by
The first comprehensive volume to integrate social-scientific literature on the origins and manifestations of prejudice against disabled people Ableism, prejudice against disabled people stereotyped as incompetent and dependent, can elicit a range of reactions that include fear, contempt, pity, and inspiration. Current literature--often narrowly focused on a specific aspect of the subject or limited in scope to psychoanalytic tradition--fails to examine the many origins and manifestations of ableism. Filling a significant gap in the field, Ableism: The Causes and Consequences of Disability Prejudice is the first work to synthesize classic and contemporary studies on the evolutionary, ideological, and cognitive-emotional sources of ableism. This comprehensive volume examines new manifestations of ableism, summarizes the state of research on disability prejudice, and explores real-world personal accounts and interventions to illustrate the various forms and impacts of ableism. This important contribution to the field combines evidence from multiple theoretical perspectives, including published and unpublished work from both disabled and nondisabled constituents, on the causes, consequences, and elimination of disability prejudice. Each chapter places findings in the context of contemporary theories--identifying methodological limits and suggesting alternative interpretations. Topics include the evolutionary and existential origins of disability prejudice, cultural and impairment-specific stereotypes, interventions to reduce prejudice, and how to effect social change through collective action and advocacy. Adopting a holistic approach to the study of disability prejudice, this accessibly-written volume: Provides an inclusive, up-to-date exploration of the origins and expressions of ableism Addresses how to resist ableist practices, prioritize accessible policies, and create more equitable social relations with pages earmarked for activists and allies Focuses on interpersonal and intergroup analysis from a social-psychological perspective Integrates research from multiple disciplines to illustrate critical cognitive, affective and behavioral mechanisms and manifestations of ableism Suggests future research directions based on topics covered in each chapter Ableism: The Causes and Consequences of Disability Prejudice is an important resource for social, community and rehabilitation psychologists, scholars and researchers of disability studies, and students, activists, and academics across political, sociological, and humanistic disciplines. "This book is an excellent resource for both members of the academic field and lay readers seeking to know more about disability prejudice and ways to address it." ~ Charlotte Schreyer, Syracuse University, Published on H-Disability (September 2022)
Disability by
This volume offers a rare mix of interpretive chapters and primary sources that will be of value to anyone interested in learning about important disability-related issues and exploring the perspectives of disabled people.Disability has become a human rights and social justice issue that should concern all Americans. Access to safe, affordable, and effective health care, access to safe and affordable housing, access to reliable and efficient public transportation, and the ability to work and participate freely in the community are central to disability justice movements. Unlike encyclopedias or biographical dictionaries that only offer brief accounts of key topics, people, events, and organizations, Disability: A Reference Handbook provides important interpretive and analytical frameworks and meaningful primary evidence. The book opens with a chapter dedicated to the history of disability in the United States, placing 21st-century issues and concerns within their contexts. The next chapter explores important controversies and questions related to disability. The third chapter brings diverse voices to the topic, and the fourth chapter offers valuable profiles of key people and organizations. The remaining chapters provide valuable reference tools that will help readers to explore topics in more depth and to engage in independent research.
The Disability Bioethics Reader by
The Disability Bioethics Reader is the first introduction to the field of bioethics presented through the lens of critical disability studies and the philosophy of disability. Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability. Directly addressing this omission, this volume includes 36 chapters, most appearing here for the first time, that cover key areas pertaining to disability bioethics, such as: state-of-the-field analyses of modern medicine, bioethics, and disability theory health, disease, and the philosophy of medicine issues at the edge- and end-of-life, including physician-aid-in-dying, brain death, and minimally conscious states enhancement and biomedical technology invisible disabilities, chronic pain, and chronic illness implicit bias and epistemic injustice in health care disability, quality of life, and well-being race, disability, and healthcare justice connections between disability theory and aging, trans, and fat studies prenatal testing, abortion, and reproductive justice.　 The Disability Bioethics Reader, unlike traditional bioethics textbooks, also engages with decades of empirical and theoretical scholarship in disability studies--scholarship that spans the social sciences and humanities--and gives serious consideration to the history of disability activism.
Disability Harassment by
Building on the insights of both disability studies and civil rights scholars, Mark C. Weber frames his examination of disability harassment on the premise that disabled people are members of a minority group that must negotiate an artificial yet often damaging environment of physical and attitudinal barriers. The book considers courts' approaches to the problem of disability harassment, particularly the application of an analogy to race and sex harassment and the development of legal remedies and policy reforms under the Americans with Disabilities Act (ADA). While litigation under the ADA has addressed discrimination in public accommodations, employment, and education, Weber points out that the law has done little to combat disability harassment. He recommends that arguments based on unused provisions of the ADA should be developed and new legal remedies advanced to address the problem. Disability Harassment also draws on case law to explore special problems of harassment in the public schools, and closes with an appeal to judges and lawmakers for expanded legal protection against harassment.
Disability Histories by
The field of disability history continues to evolve rapidly. In this collection, Susan Burch and Michael Rembis present essays that integrate critical analysis of gender, race, historical context, and other factors to enrich and challenge the traditional modes of interpretation still dominating the field. Contributors delve into four critical areas of study within disability history: family, community, and daily life; cultural histories; the relationship between disabled people and the medical field; and issues of citizenship, belonging, and normalcy. As the first collection of its kind in over a decade, Disability Histories not only brings readers up to date on scholarship within the field but fosters the process of moving it beyond the U.S. and Western Europe by offering work on Africa, South America, and Asia. The result is a broad range of readings that open new vistas for investigation and study while encouraging scholars at all levels to redraw the boundaries that delineate who and what is considered of historical value. Informed and accessible, Disability Histories is essential for classrooms engaged in all facets of disability studies within and across disciplines.
The Future Is Disabled by
In The Future Is Disabled, Leah Laksmi Piepzna-Samarasinha asks some provocative questions: What if, in the near future, the majority of people will be disabled - and what if that's not a bad thing? And what if disability justice and disabled wisdom are crucial to creating a future in which it's possible to survive fascism, climate change, and pandemics and to bring about liberation? Building on the work of their game-changing book Care Work: Dreaming Disability Justice, Piepzna-Samarasinha writes about disability justice at the end of the world, documenting the many ways disabled people kept and are keeping each other - and the rest of the world - alive during Trump, fascism and the COVID-19 pandemic. Other subjects include crip interdependence, care and mutual aid in real life, disabled community building, and disabled art practice as survival and joy. Written over the course of two years of disabled isolation during the pandemic, this is a book of love letters to other disabled QTBIPOC (and those concerned about disability justice, the care crisis, and surviving the apocalypse); honour songs for kin who are gone; recipes for survival; questions and real talk about care, organizing, disabled families, and kin networks and communities; and wild brown disabled femme joy in the face of death. With passion and power, The Future Is Disabled remembers our dead and insists on our future.
Intellectual Disability by
Approximately 2.5 million people in the United States--one percent of the population--have an intellectual disability (previously referred to as mental retardation). These conditions range from genetic disorders such as Down syndrome to disabilities caused by infectious diseases and braininjury. Intellectual Disability: A Guide for Families and Professionals, by one of the country's foremost authorities on intellectual disability, is a comprehensive resource that will be of importance to anyone with a personal connection to a child or adult with a neurodevelopmental disorder.Emphasizing the humanity of persons with intellectual and related developmental disabilities, psychiatrist and pediatrician James Harris provides essential information on assessment and diagnosis of intellectual disability, treatments for specific disorders, and ways to take advantage of the widearray of services available today. The focus throughout is on the development of the person, the positive supports necessary for self-determination, and, to the extent possible, independent decision making. Harris also surveys historical attitudes toward intellectual disability, the medicalcommunity's current understanding of its causes and frequency, and the associated physical, behavioral, and psychiatric conditions (such as seizure disorder, depression, and autism) that often accompany particular types of intellectual disability. The book addresses legal, medical, mental health,and research-related issues as well as matters of spirituality, highlighting the ways in which individuals with intellectual disability can meaningfully participate in the spiritual lives of their families and their communities. Each chapter ends with a series of key points to remember, and the bookconcludes with a list of additional resources of further interest.Intellectual Disability is a must-read for parents and families of those with neurodevelopmental disorders, providing guidance and essential information to help their family members effectively, and to make a significant, positive difference in their lives now and in the future.
Intellectual Disability and Dementia by
Presenting the most up-to-date information available about dementia and intellectual disabilities, this book brings together the latest international research and evidence-based practice, and describes clearly the relevance and implications for support and services Internationally renowned experts from the UK, Ireland, the USA, Canada, Australia and the Netherlands discuss good practice and the way forward in relation to assessment, diagnosis, interventions, staff knowledge and training, care pathways, service design, measuring outcomes and the experiences of individuals, families and carers. The wealth of information offered will inform support and services throughout the whole course of dementia, from diagnosis to end of life. Particular emphasis is placed on how intellectual disability and dementia services can work collaboratively to offer more effective, joined up support. Practitioners, managers and commissioners will find this to be an informative resource for developing person-centred provision for people with intellectual disabilities and dementia and their families. It will also be a key text for academics and students who wish to be up-to-date with the latest research and practice developments in this field.
Keywords for Disability Studies by
A new vocabulary for Disability StudiesKeywords for Disability Studies aims to broaden and define the conceptual framework of disability studies for readers and practitioners in the field and beyond. The volume engages some of the most pressing debates of our time, such as prenatal testing, euthanasia, accessibility in public transportation and the workplace, post-traumatic stress, and questions about the beginning and end of life.Each of the 60 essays in Keywords for Disability Studies focuses on a distinct critical concept, including "ethics," "medicalization," "performance," "reproduction," "identity," and "stigma," among others. Although the essays recognize that "disability" is often used as an umbrella term, the contributors to the volume avoid treating individual disabilities as keywords, and instead interrogate concepts that encompass different components of the social and bodily experience of disability. The essays approach disability as an embodied condition, a mutable historical phenomenon, and a social, political, and cultural identity.An invaluable resource for students and scholars alike, Keywords for Disability Studies brings the debates that have often remained internal to disability studies into a wider field of critical discourse, providing opportunities for fresh theoretical considerations of the field's core presuppositions through a variety of disciplinary perspectives.Visit keywords.nyupress.org for online essays, teaching resources, and more.
The Spirit Catches You and You Fall Down by
Winner of the National Book Critics Circle Award for Nonfiction. When three-month-old Lia Lee Arrived at the county hospital emergency room in Merced, California, a chain of events was set in motion from which neither she nor her parents nor her doctors would ever recover. Lia's parents, Foua and Nao Kao, were part of a large Hmong community in Merced, refugees from the CIA-run "Quiet War" in Laos. The Hmong, traditionally a close-knit and fiercely people, have been less amenable to assimilation than most immigrants, adhering steadfastly to the rituals and beliefs of their ancestors. Lia's pediatricians, Neil Ernst and his wife, Peggy Philip, cleaved just as strongly to another tradition: that of Western medicine. When Lia Lee Entered the American medical system, diagnosed as an epileptic, her story became a tragic case history of cultural miscommunication. Parents and doctors both wanted the best for Lia, but their ideas about the causes of her illness and its treatment could hardly have been more different. The Hmong see illness and healing as spiritual matters linked to virtually everything in the universe, while medical community marks a division between body and soul, and concerns itself almost exclusively with the former. Lia's doctors ascribed her seizures to the misfiring of her cerebral neurons; her parents called her illness, qaug dab peg - the spirit catches you and you fall down - and ascribed it to the wandering of her soul. The doctors prescribed anticonvulsants; her parents preferred animal sacrifices.
Studying Disability Arts and Culture by
In this accessible introduction to the study of Disability Arts and Culture, Petra Kuppers foregrounds themes, artists and theoretical concepts in this diverse field. Complete with case studies, exercises and questions for further study, the book introduces students to the work of disabled artists and their allies, and explores artful responses to living with physical, cognitive, emotional or sensory difference. Engaging readers as cultural producers, Kuppers provides useful frameworks for critical analysis and encourages students to explore their own positioning within the frames of gender, race, sexuality, class and disability. Comprehensive and accessible, this is an essential handbook for undergraduate students or anyone interested in disabled bodies and minds in theatre, performance, creative writing, art and dance.
Children with Disabilities by
P.S. Professors--don't miss the FREE Course Companion Web Site supplementing the book! Includes annotated links for each chapter, chapter objectives, references for each chapter linked to PubMed, a searchable glossary, PowerPoint slides, extra readings and case studies, and study guides. http: //textbooks.brookespublishing.com/batshaw
Intellectual Disabilities Across the Lifespan by
This book provides an introduction to intellectual disabilities that is highly readable, comprehensive, and reflective of the broad array of human stories associated with this condition. This volume is strongly based in human development and follows the development of individuals with intellectual disabilities from conception through birth, infancy, and early childhood, and then through the elementary school, adolescent, and adult years. Intellectual disabilities is a field in which this complete cycle of human life is important for a full understanding of the challenges and issues involved. The authors also examine intellectual disabilities from the perspective of many disciplines. It is important to examine collaboration among disciplines and its impact on the person with intellectual disabilities and his or her family. This edition has updated and expanded coverage of a number of growing areas related to the field of intellectual disabilities
Belonging for People with Profound Intellectual and Multiple Disabilities by
This book pushes the boundaries in the way we approach people with profound intellectual and multiple disabilities, and in how we work with them in education and research. While it is grounded in diverse theoretical frameworks and disciplines, the book coheres around a commitment to seeing people with profound intellectual and multiple disabilities as equal citizens who belong in our classrooms, research projects and community lives. Each section covers policy contexts, key ideas and recent research. Featuring contributions from around the world, the book incorporates established and new voices, different disciplines and experiences. Additionally, it includes pieces from family members of people with profound intellectual and multiple disabilities. Divided into three parts, the book explores three main topics: Belonging in education Belonging in research Belonging in communities Belonging for People with Profound Intellectual and Multiple Disabilitiesis an invaluable resource for scholars, professionals and postgraduate research students with an interest in children or adults with profound intellectual and multiple disabilities.
(EBOOK) Disability Visibility by
"Disability rights activist Alice Wong brings tough conversations to the forefront of society with this anthology. It sheds light on the experience of life as an individual with disabilities, as told by none other than authors with these life experiences. It's an eye-opening collection that readers will revisit time and time again." --Chicago Tribune 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. Activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people, just in time for the thirtieth anniversary of the Americans with Disabilities Act, From Harriet McBryde Johnson's account of her debate with Peter Singer over her own personhood to original pieces by authors like Keah Brown and Haben Girma; from blog posts, manifestos, and eulogies to Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.
(EBOOK) Don't put us away: memories of a man with learning disabilities by 
(EBOOK) Lessons from a Disabled Caregiver : Thriving Together and Maintaining Independence with Physical Disability and Dementia by
"Progressive, untreatable nerve and muscle diseases transformed the author's life from competing as a college athlete to needing a wheelchair and special equipment for day-to-day activities. While dealing with his own conditions, he was faced with the unique challenge of being the sole caregiver for his wife who was living with Alzheimer's. Encouraged by others, he has written this experience-based book to help people with life-altering medical conditions and those dealing with challenging caregiving responsibilities. Comprehensive in scope, it covers topics including grief, finances, safety and end-of-life planning. This is a resource book containing many references aimed at helping the reader overcome their challenges, maintain their independence and have a happy, fulfilling life"-- Provided by publisher.
(EBOOK) The Disabled Child by
When children are born with disabilities or become disabled in childhood, parents often experience bewilderment: they find themselves unexpectedly in another world, without a roadmap, without community, and without narratives to make sense of their experiences. The Disabled Child: Memoirs of a Normal Future tracks the narratives that have emerged from the community of parent-memoirists who, since the 1980s, have written in resistance of their children's exclusion from culture. Though the disabilities represented in the genre are diverse, the memoirs share a number of remarkable similarities; they are generally written by white, heterosexual, middle or upper-middle class, ablebodied parents, and they depict narratives in which the disabled child overcomes barriers to a normal childhood and adulthood. Apgar demonstrates that in the process of telling these stories, which recuperate their children as productive members of society, parental memoirists write their children into dominant cultural narratives about gender, race, and class. By reinforcing and buying into these norms, Apgar argues, "special needs" parental memoirs reinforce ableism at the same time that they're writing against it.
Ask Me about My Uterus by
For any woman who has experienced illness, chronic pain, or endometriosis comes an inspiring memoir advocating for recognition of women's health issues In the fall of 2010, Abby Norman's strong dancer's body dropped forty pounds and gray hairs began to sprout from her temples. She was repeatedly hospitalized in excruciating pain, but the doctors insisted it was a urinary tract infection and sent her home with antibiotics. Unable to get out of bed, much less attend class, Norman dropped out of college and embarked on what would become a years-long journey to discover what was wrong with her. It wasn't until she took matters into her own hands -- securing a job in a hospital and educating herself over lunchtime reading in the medical library -- that she found an accurate diagnosis of endometriosis. In Ask Me About My Uterus, Norman describes what it was like to have her pain dismissed, to be told it was all in her head, only to be taken seriously when she was accompanied by a boyfriend who confirmed that her sexual performance was, indeed, compromised. Putting her own trials into a broader historical, sociocultural, and political context, Norman shows that women's bodies have long been the battleground of a never-ending war for power, control, medical knowledge, and truth. It's time to refute the belief that being a woman is a preexisting condition.
The Beauty of Dusk by
From New York Times columnist and bestselling author Frank Bruni comes a wise and moving memoir about aging, affliction, and optimism after partially losing his eyesight. One morning in late 2017, New York Times columnist Frank Bruni woke up with strangely blurred vision. He wondered at first if some goo or gunk had worked its way into his right eye. But this was no fleeting annoyance, no fixable inconvenience. Overnight, a rare stroke had cut off blood to one of his optic nerves, rendering him functionally blind in that eye--forever. And he soon learned from doctors that the same disorder could ravage his left eye, too. He could lose his sight altogether. In The Beauty of Dusk, Bruni hauntingly recounts his adjustment to this daunting reality, a medical and spiritual odyssey that involved not only reappraising his own priorities but also reaching out to, and gathering wisdom from, longtime friends and new acquaintances who had navigated their own traumas and afflictions. The result is a poignant, probing, and ultimately uplifting examination of the limits that all of us inevitably encounter, the lenses through which we choose to evaluate them and the tools we have for perseverance. Bruni's world blurred in one sense, as he experienced his first real inklings that the day isn't forever and that light inexorably fades, but sharpened in another. Confronting unexpected hardship, he felt more blessed than ever before. There was vision lost. There was also vision found.
Because I Come from a Crazy Family by
From the bestselling author of the classic book on ADD,Driven to Distraction, a memoir of the strange upbringing that shaped Dr. Edward M. Hallowell's celebrated career. When Edward M. Hallowell was eleven, a voice out of nowhere told him he should become a psychiatrist. A mental health professional of the time would have called this psychosis. But young Edward (Ned) took it in stride, despite not quite knowing what "psychiatrist" meant. With a psychotic father, alcoholic mother, abusive stepfather, and two so-called learning disabilities of his own, Ned was accustomed to unpredictable behavior from those around him, and to a mind he felt he couldn't alwayscontrol. The voice turned out to be right. Now, decades later, Hallowell is a leading expert on attention disorders and the author of twenty books, includingDriven to Distraction, the work that introduced ADD to the world. InBecause I Come from a Crazy Family, he tells the often strange story of a childhood marked by what he calls the "WASP triad" of alcoholism, mental illness, and politeness, and explores the wild wish, surging beneath his incredible ambition, that he could have saved his own family of drunk, crazy, and well-intentioned eccentrics, and himself. Because I Come from a Crazy Family is an affecting, at times harrowing, ultimately moving memoir about crazy families and where they can lead, about being called to the mental health profession, and about the unending joys and challenges that come with helping people celebrate who they are. A portion of the author's proceeds of this book will go to NAMI (National Alliance on Mental Illness).
Behind the Mirror by
The life story of Jeanne Simons, whose own autism informed her pioneering work with autistic children. Jeanne Simons devoted her career as a social worker and educator to the study, treatment, and care of children with autism. In 1955, she established the Linwood Children's Center in Ellicott City, Maryland, one of the first schools dedicated to children with autism. Her Linwood Model, developed there, was widely adopted and still forms the basis for a variety of autism intervention techniques. Incredibly--although unknown at the time--Jeanne was herself autistic. Behind the Mirror reveals the remarkable tale of this trailblazer and how she thought, felt, and experienced the world around her. With moving immediacy, Jeanne tells her life story to developmental psychologist, friend, and collaborator Sabine Oishi. Jeanne's unique experience is supplemented by commentary from Dr. Oishi, who explains the importance of key biographical details and fills in additional information about the diagnosis and treatment of autism. Enhanced with a photo gallery, a look at new approaches to the education of children with autism, and a history of Linwood since its founding, the book also contains a foreword, an afterword, and an appendix by James C. Harris, MD, the past director of child psychiatry at Johns Hopkins University School of Medicine and the founder of its autism clinic. Demystifying the experience of autism, Behind the Mirror is a groundbreaking account of possibilities and hope.
Being Heumann by
A Publishers Weekly Best Book of the Year for Nonfiction "...an essential and engaging look at recent disability history."-- Buzzfeed One of the most influential disability rights activists in US history tells her personal story of fighting for the right to receive an education, have a job, and just be human. A story of fighting to belong in a world that wasn't built for all of us and of one woman's activism--from the streets of Brooklyn and San Francisco to inside the halls of Washington--Being Heumann recounts Judy Heumann's lifelong battle to achieve respect, acceptance, and inclusion in society. Paralyzed from polio at eighteen months, Judy's struggle for equality began early in life. From fighting to attend grade school after being described as a "fire hazard" to later winning a lawsuit against the New York City school system for denying her a teacher's license because of her paralysis, Judy's actions set a precedent that fundamentally improved rights for disabled people. As a young woman, Judy rolled her wheelchair through the doors of the US Department of Health, Education, and Welfare in San Francisco as a leader of the Section 504 Sit-In, the longest takeover of a governmental building in US history. Working with a community of over 150 disabled activists and allies, Judy successfully pressured the Carter administration to implement protections for disabled peoples' rights, sparking a national movement and leading to the creation of the Americans with Disabilities Act. Candid, intimate, and irreverent, Judy Heumann's memoir about resistance to exclusion invites readers to imagine and make real a world in which we all belong.
Being Seen by
A Deafblind writer and professor explores how the misrepresentation of disability in books, movies, and TV harms both the disabled community and everyone else. As a Deafblind woman with partial vision in one eye and bilateral hearing aids, Elsa Sjunneson lives at the crossroads of blindness and sight, hearing and deafness--much to the confusion of the world around her. While she cannot see well enough to operate without a guide dog or cane, she can see enough to know when someone is reacting to the visible signs of her blindness and can hear when they're whispering behind her back. And she certainly knows how wrong our one-size-fits-all definitions of disability can be. As a media studies professor, she's also seen the full range of blind and deaf portrayals on film, and here she deconstructs their impact, following common tropes through horror, romance, and everything in between. Part memoir, part cultural criticism, part history of the Deafblind experience, Being Seen explores how our cultural concept of disability is more myth than fact, and the damage it does to us all.
The Book of Sarah by
There is no "Book of Sarah" in the Bible, so artist Sarah Lightman sets out to make her own. In this quietly subversive graphic autobiography, Lightman follows the urge to find herself in the midst of training to become an artist, observing her faith, navigating family and romantic relationships, and learning to be a mother. Drawings of a Jewish children's Bible, a package of crackers, a Lower East Side walk-up, Columbia University, and the outside of St. Paul's Girls' School: books and streets, buildings, objects, and portraits of people fill this coming-of-age story set in northwest London and New York City. The Book of Sarah traces the author's journey from modern Jewish orthodoxy to a feminist Judaism, as she searches between the complex layers of family and family history that she inherited and inhabited. While the act of drawing came easily to Sarah, letting go of past failures, attachments, and expectations did not. These are the focus of her astonishingly beautiful pages, as we bear witness to her making the world her own. Poignantly narrated and illustrated with charcoal, pencil, watercolor, and oil, this is an intimate story of a self-in-becoming.
The Collected Schizophrenias by
Powerful, affecting essays on mental illness, winner of the Graywolf Press Nonfiction Prize and a Whiting Award An intimate, moving book written with the immediacy and directness of one who still struggles with the effects of mental and chronic illness, The Collected Schizophrenias cuts right to the core. Schizophrenia is not a single unifying diagnosis, and Esmé Weijun Wang writes not just to her fellow members of the "collected schizophrenias" but to those who wish to understand it as well. Opening with the journey toward her diagnosis of schizoaffective disorder, Wang discusses the medical community's own disagreement about labels and procedures for diagnosing those with mental illness, and then follows an arc that examines the manifestations of schizophrenia in her life. In essays that range from using fashion to present as high-functioning to the depths of a rare form of psychosis, and from the failures of the higher education system and the dangers of institutionalization to the complexity of compounding factors such as PTSD and Lyme disease, Wang's analytical eye, honed as a former lab researcher at Stanford, allows her to balance research with personal narrative. An essay collection of undeniable power, The Collected Schizophrenias dispels misconceptions and provides insight into a condition long misunderstood.
Cost of Living by
A Best Book of 2022 - USA TODAY Named one of the Chicago Public Library's "Best Books of 2022" "Astute, compassionate and lethally funny. Maloney is an exceptionally alert writer on whom nothing is lost, who sees everything with excruciating clarity." --Sarah Manguso, The New York Times The searing intimacy of Girl, Interrupted combines with the uncomfortable truths of The Empathy Exams in a collection of essays chronicling one woman's experiences as both patient and caregiver, giving a unique perspective from both sides of the hospital bed. What does it cost to live? When we fall ill, our lives are itemized on a spreadsheet. A thousand dollars for a broken leg, a few hundred for a nasty cut while cooking dinner. Then there are the greater costs for even greater misfortunes. The car accidents, breast cancers, blood diseases, and dark depressions. When Emily Maloney was nineteen she tried to kill herself. An act that would not only cost a great deal personally, but also financially, sending her down a dark spiral of misdiagnoses, years spent in and out of hospitals and doctor's offices, and tens of thousands owed in medical debt. To work to pay off this crippling burden, Emily becomes an emergency room technician. Doing the grunt work in a hospital, and taking care of patients at their most vulnerable moments, chronicling these interactions in searingly beautiful, surprising ways. Shocking and often slyly humorous, Cost of Living is a brilliant examination of just what exactly our troubled healthcare system asks us to pay, as well as a look at what goes on behind the scenes at our hospitals and in the minds of caregivers.
Dear Friend, from My Life I Write to You in Your Life by
In her first memoir, award-winning novelist Yiyun Li offers a journey of recovery through literature: a letter from a writer to like-minded readers. "A meditation on the fact that literature itself lives and gives life."--Marilynne Robinson, author of Gilead "What a long way it is from one life to another, yet why write if not for that distance?" Startlingly original and shining with quiet wisdom, this is a luminous account of a life lived with books. Written over two years while the author battled suicidal depression, Dear Friend, from My Life I Write to You in Your Life is a painful and yet richly affirming examination of what makes life worth living. Yiyun Li grew up in China and has spent her adult life as an immigrant in a country not her own. She has been a scientist, an author, a mother, a daughter--and through it all she has been sustained by a profound connection with the writers and books she loves. From William Trevor and Katherine Mansfield to Søren Kierkegaard and Philip Larkin, Dear Friend is a journey through the deepest themes that bind these writers together. Interweaving personal experiences with a wide-ranging homage to her most cherished literary influences, Yiyun Li confronts the two most essential questions of her identity: Why write? And why live? Praise for Dear Friend, from My Life I Write to You in Your Life "Li has stared in the face of much that is beautiful and ugly and treacherous and illuminating--and from her experience she has produced a nourishing exploration of the will to live willfully."--The Washington Post "Li's transformation into a writer . . . is nothing short of astonishing.'"--The New York Times Book Review "An arrestingly lucid, intellectually vital series of contemplations on art, identity, and depression."--The Boston Globe "Li is an exemplary storyteller and this account of her journey back to equilibrium, assisted by her closest companion, literature, is as powerful as any of her award-winning fiction, with the dark fixture of her Beijing past at its centre."--Financial Times "Every writer is a reader first, and Dear Friend is Li's haunted, luminous love letter to the words that shaped her. . . . Her own prose is both lovely and opaque, fitfully illuminating a radiant landscape of the personal and profound."--Entertainment Weekly "Yiyun Li's prose is lean and intense, and her ideas about books and writing are wholly original."--San Francisco Chronicle
Disability Visibility by
"Disability rights activist Alice Wong brings tough conversations to the forefront of society with this anthology. It sheds light on the experience of life as an individual with disabilities, as told by none other than authors with these life experiences. It's an eye-opening collection that readers will revisit time and time again." --Chicago Tribune 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. Activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people, just in time for the thirtieth anniversary of the Americans with Disabilities Act, From Harriet McBryde Johnson's account of her debate with Peter Singer over her own personhood to original pieces by authors like Keah Brown and Haben Girma; from blog posts, manifestos, and eulogies to Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.
Easy Beauty by
Finalist for the Pulitzer Prize in Memoir or Autobiography A New York Times Notable Book of 2022 * Vulture's #1 Memoir of 2022 * A Washington Post, Los Angeles Times, USA TODAY, Time, BuzzFeed, Publishers Weekly, Booklist, and New York Public Library Best Book of the Year From Chloé Cooper Jones--Pulitzer Prize finalist, philosophy professor, Whiting Creative Nonfiction Grant recipient--an "exquisite" (Oprah Daily) and groundbreaking memoir about disability, motherhood, and the search for a new way of seeing and being seen. "I am in a bar in Brooklyn, listening to two men, my friends, discuss whether my life is worth living." So begins Chloé Cooper Jones's bold, revealing account of moving through the world in a body that looks different than most. Jones learned early on to factor "pain calculations" into every plan, every situation. Born with a rare congenital condition called sacral agenesis which affects both her stature and gait, her pain is physical. But there is also the pain of being judged and pitied for her appearance, of being dismissed as "less than." The way she has been seen--or not seen--has informed her lens on the world her entire life. She resisted this reality by excelling academically and retreating to "the neutral room in her mind" until it passed. But after unexpectedly becoming a mother (in violation of unspoken social taboos about the disabled body), something in her shifts, and Jones sets off on a journey across the globe, reclaiming the spaces she'd been denied, and denied herself. From the bars and domestic spaces of her life in Brooklyn to sculpture gardens in Rome; from film festivals in Utah to a Beyoncé concert in Milan; from a tennis tournament in California to the Killing Fields of Phnom Penh, Jones weaves memory, observation, experience, and aesthetic philosophy to probe the myths underlying our standards of beauty and desirability and interrogates her own complicity in upholding those myths. "Bold, honest, and superbly well-written" (Andre Aciman, author of Call Me By Your Name) Easy Beauty is the rare memoir that has the power to make you see the world, and your place in it, with new eyes.
Empty by
An editor at This American Life reveals the searing story of the secret binge-eating that dominated her adolescence and shapes her still. "Her tale of compulsion and healing is candid and powerful."--People NAMED ONE OF THE BEST BOOKS OF THE YEAR BY MARIE CLAIRE For almost thirty years, Susan Burton hid her obsession with food and the secret life of compulsive eating and starving that dominated her adolescence. This is the relentlessly honest, fiercely intelligent story of living with both anorexia and binge-eating disorder, moving past her shame, and learning to tell her secret. When Burton was thirteen, her stable life in suburban Michigan was turned upside down by her parents' abrupt divorce, and she moved to Colorado with her mother and sister. She seized on this move west as an adventure and an opportunity to reinvent herself from middle-school nerd to popular teenage girl. But in the fallout from her parents' breakup, an inherited fixation on thinness went from "peculiarity to pathology." Susan entered into a painful cycle of anorexia and binge eating that formed a subterranean layer to her sunny life. She went from success to success--she went to Yale, scored a dream job at a magazine right out of college, and married her college boyfriend. But in college the compulsive eating got worse--she'd binge, swear it would be the last time, and then, hours later, do it again--and after she graduated she descended into anorexia, her attempt to "quit food." Binge eating is more prevalent than anorexia or bulimia, but there is less research and little storytelling to help us understand it. In tart, soulful prose Susan Burton strikes a blow for the importance of this kind of narrative and tells an exhilarating story of longing, compulsion and hard-earned self-revelation.
Every Morning, So Far, Im Alive by
Every morning, so far, I'm alive is about what it's like to live in a world where shaking a stranger's hand, catching a taxi or touching a door handle are fraught with fear and dread.This memoir charts the author's breakdown after migrating from New Zealand to England: what begins as homesickness and career burn-out develops into depression, contamination phobia and OCD. Increasingly alienated from all the things that previously gave her life meaning and purpose - family, work, nature, literature - the author is forced to confront a question once posed by the young Virginia Woolf: 'How is one to live in such a world?'In this fiercely honest memoir Wendy Parkins, a former English professor, explores what it means to belong and feel at home, and how we are shaped by our first environments, both familial and physical. Describing the gradual process of recovery - as well as its reversals - it shows that returning to health can be about rediscovering how we came to be who we are, without becoming trapped by our narratives of origin. Like coming home, recovery is never quite what we expect it to be, however much we long for it.Beautifully written, intensely moving and threaded with self-deprecating humour, Every morning, so far, I'm alive is about claiming the right to tell our own story and learning to embrace the risks that the messy unpredictability of life always entails.
Fall down 7 Times Get Up 8 by
From the author of the bestselling The Reason I Jump, an extraordinary self-portrait of a young adult with autism "Essential reading for parents and teachers of those with autism who remain nonverbal."--Temple Grandin Naoki Higashida was only thirteen when he wrote The Reason I Jump, a revelatory account of autism from the inside by a nonverbal Japanese child, which became an international success. Now, in Fall Down 7 Times Get Up 8, he shares his thoughts and experiences as a young man living each day with severe autism. In short, powerful chapters, Higashida explores school memories, family relationships, the exhilaration of travel, and the difficulties of speech. He also allows readers to experience profound moments we take for granted, like the thought-steps necessary for him to register that it's raining outside. Acutely aware of how strange his behavior can appear to others, he aims throughout to foster a better understanding of autism and to encourage society to see people with disabilities as people, not as problems. With an introduction by the bestselling novelist David Mitchell, Fall Down 7 Times Get Up 8 also includes a dreamlike short story Higashida wrote especially for the U.S. edition. Both moving and of practical use, this book opens a window into the mind of an inspiring young man who meets every challenge with tenacity and good humor. However often he falls down, he always gets back up. Praise for Fall Down 7 Times Get Up 8 "[Naoki Higashida's] success as a writer now transcends his diagnosis. . . . His relative isolation--with words as his primary connection to the outside world--has allowed him to fully develop the powers of observation that are necessary for good writing, and he has developed rich, deep perspectives on ideas that many take for granted. . . . The diversity of Higashida's writing, in both subject and style, fits together like a jigsaw puzzle of life put in place with humor and thoughtfulness."--The Japan Times "Profound insights about what the struggle of living with autism is really like . . . Once again, the invitation to step inside Higashida's mind is irresistible."--London Evening Standard "Naoki Higashida's lyrical and heartfelt account of his condition is a gift to anyone involved with the same challenges. . . . Higashida shows a delicate regard for the difficulties his condition creates . . . and is adept at explaining his experiences in language that makes sense to neurotypicals."--The Guardian
Girl in the Dark by
A gorgeous memoir of an unthinkable life: a young woman writes of the sensitivity to light that has forced her to live in darkness, and of the love that has saved her. "Something is afoot within me that I do not understand, the breaking of a contract that I thought could not be broken, a slow perverting of my substance." Anna was living a normal life. She was ambitious and worked hard; she had just bought an apartment; she was falling in love. But then she started to develop worrying symptoms: her face felt like it was burning whenever she was in front of the computer. Soon this progressed to an intolerance of fluorescent light, then of sunlight itself. The reaction soon spread to her entire body. Now, when her symptoms are at their worst, she must spend months on end in a blacked-out room, losing herself in audio books and elaborate word games in an attempt to ward off despair. During periods of relative remission she can venture cautiously out at dawn and dusk, into a world that, from the perspective of her normally cloistered existence, is filled with remarkable beauty. And throughout there is her relationship with Pete. In many ways he is Anna's savior, offering her shelter from the light in his home. But she cannot enjoy a normal life with him, cannot go out in the day, and even making love is uniquely awkward. Anna asks herself "By continuing to occupy this lovely man while giving him neither children nor a public companion nor a welcoming home--do I do wrong?" With gorgeous, lyrical prose, Anna brings us into the dark with her, a place from which we emerge to see love, and the world, anew.
Growing Old by
From the revered author of the bestselling The Hidden Life of Dogs, a witty, engaging, life-affirming account of the joy, strength, and wisdom that comes with age. Elizabeth Marshall Thomas has spent a lifetime observing the natural world, chronicling the customs of pre-contact hunter-gatherers and the secret lives of deer and dogs. In this book, the capstone of her long career, Thomas, now eighty-eight, turns her keen eye to her own life. The result is an account of growing old that is at once funny and charming and intimate and profound, both a memoir and a life-affirming map all of us may follow to embrace our later years with grace and dignity. A charmingly intimate account and a broad look at the social and historical traditions related to aging, Growing Old explores a wide range of issues connected with growing older, from stereotypes of the elderly as burdensome to the methods of burial humans have used throughout history to how to deal with a concerned neighbor who assumes you're buying cat food to eat for dinner. Written with the wit of Nora Ephron's I Feel Bad About My Neck and the lyrical beauty and serene wisdom of When Breath Becomes Air, Growing Old is an expansive and deeply personal paean to the beauty and the brevity of life that offers understanding for everyone, regardless of age.
Hands: an Anxious Mind Unpicked by
'Raw, intense and absorbing.' MATT HAIG 'As tender and funny as it is painful.' TLS 'I didn't give my hands much thought before they turned against me. ... They have been chipping away at my life, slowly, slowly, in a way I could never have predicted.' Lauren Brown is anxious. And when she feels worried, she picks at her skin. Secretly, quietly, but increasingly compulsively, her skin-picking begins to affect her day-to-day life until she realizes she must unravel the reasons behind it. This sparkling memoir follows the thread of Lauren's anxiety - tangled and frayed - back to its source. Written with rare wit and insight, it is an attempt to redirect the anxiety that's pooled in her fingertips for as long as she can remember, released in odd bursts in caravan parks, on European holidays, at GP surgeries and on the wind-stung north-east coast. It is a moving and joyful exploration of obsession, forgiveness, stigma and healing, and a true love-song to the north. Thoughtful, unsparing and at times darkly comic, Hands is the masterful debut of a luminous new talent.
The Hilarious World of Depression by
"A moving, portrait of depression, from the host of the podcast The Hilarious World of Depression "This book is an excellent life raft for those of us who are so sure that we are alone in our struggles. You should read it." -Jenny Lawson "A funny, honest book about depression, and what you can do despite it." -Neil Gaiman "Candid and funny and intimate." -Susan Orlean For years John Moe, critically-acclaimed public radio personality and host of The Hilarious World of Depression podcast, struggled with depression; it plagued his family and claimed the life of his brother in 2007. As Moe came to terms with his own illness, he began to see similar patterns of behavior and coping mechanisms surfacing in conversations with others, including high-profile comedians who'd struggled with the disease. Moe saw that there was tremendous comfort and community in open dialogue about these shared experiences and that humor had a unique power. Thus was born the podcast The Hilarious World of Depression. Inspired by the immediate success of the podcast, Moe has written a remarkable investigation of the disease, part memoir of his own journey, part treasure trove of laugh-out-loud stories and insights drawn from years of interviews with some of the most brilliant minds facing similar challenges. Throughout the course of this powerful narrative, depression's universal themes come to light, among them, struggles with identity, lack of understanding of the symptoms, the challenges of work-life, self-medicating, the fallout of the disease in the lives of our loved ones, the tragedy of suicide, and the hereditary aspects of the disease. The Hilarious World of Depression illuminates depression in an entirely fresh and inspiring way."-- Provided by publisher.
How to Be Autistic by
Poe's voice is confident, moving and often funny, as they reveal to us a very personal account of autism, mental illness, gender and sexual identity. Charlotte witnesses their own behaviour with a wry humour as they sympathises with those who care for them, yet all the while challenging the neurotypical narratives of autism as something to be 'fixed'. Punctuated by their poetry, this is an exuberant, inspiring, life-changing insight into autism from a viewpoint almost entirely missing from public discussion.
The last asylum: a memoir of madness in our times by 
Marbles by
Cartoonist Ellen Forney explores the relationship between "crazy" and "creative" in this graphic memoir of her bipolar disorder, woven with stories of famous bipolar artists and writers. Shortly before her thirtieth birthday, Forney was diagnosed with bipolar disorder. Flagrantly manic and terrified that medications would cause her to lose creativity, she began a years-long struggle to find mental stability while retaining her passions and creativity. Searching to make sense of the popular concept of the crazy artist, she finds inspiration from the lives and work of other artists and writers who suffered from mood disorders, including Vincent van Gogh, Georgia O'Keeffe, William Styron, and Sylvia Plath. She also researches the clinical aspects of bipolar disorder, including the strengths and limitations of various treatments and medications, and what studies tell us about the conundrum of attempting to "cure" an otherwise brilliant mind. Darkly funny and intensely personal, Forney's memoir provides a visceral glimpse into the effects of a mood disorder on an artist's work, as she shares her own story through bold black-and-white images and evocative prose.
Memoirs by
A complete collection of Robert Lowell's autobiographical prose, from unpublished writings about his youth to reflections on the triumphs and confusions of his adult life. Robert Lowell's Memoirs is an unprecedented literary discovery: the manuscript of Lowell's lyrical evocation of his childhood, which was written in the 1950s and has remained unpublished until now. Meticulously edited by Steven Gould Axelrod and Grzegorz Kosc, it serves as a precursor or companion to his groundbreaking book of poems Life Studies, which signaled a radically new prose-inflected direction in his work, and indeed in American poetry. Memoirs also includes intense depictions of Lowell's mental illness and his determined efforts to recover. It concludes with Lowell's reminiscences of other writers, among them T. S. Eliot, Robert Frost, Ezra Pound, John Berryman, Anne Sexton, Hannah Arendt, and Sylvia Plath. Memoirs demonstrates Lowell's expansive gifts as a prose stylist and his powers of introspection and observation. It provides striking new evidence of the range and brilliance of Lowell's achievement. Includes black-and-white photographs
Mermaid by
At the age of three, Eileen Cronin first realized that only she did not have legs. Her boisterous Catholic family accepted her situation as "God's will," treating her no differently than her ten siblings, as she "squiddled" through their 1960s Cincinnati home. But starting school, even wearing prosthetics, Cronin had to brave bullying and embarrassing questions. Thanks to her older brother's coaching, she handled a classmate's playground taunts with a smack from her lunchbox. As a teen, thrilled when boys asked her out, she was confused about what sexuality meant for her. She felt most comfortable and happiest relaxing and skinny dipping with her girlfriends, imagining herself "an elusive mermaid." The cause of her disability remained taboo, however, even as she looked toward the future and the possibility of her own family. In later years, as her mother battled mental illness and denied having taken the drug thalidomide--known to cause birth defects--Cronin felt apart from her family. After the death of a close brother, she turned to alcohol. Eventually, however, she found the strength to set out on her own, volunteering at hospitals and earning a PhD in clinical psychology. Reflecting with humor and grace on her youth, search for love, and quest for answers, Cronin spins a shimmering story of self-discovery and transformation.
My Mess Is a Bit of a Life by
"Georgia Pritchett is a singularly hilarious person. Her book is a delightful and perfect reflection of her. Its tenderness sneaks up on you and really packs a punch. What a magnificent read!"--Julia Louis Dreyfus Jenny Lawson meets Nora Ephron in this joyful memoir-in-vignettes on living--and thriving--with anxiety from a multiple Emmy Award-winning comedy writer whose credits include Succession and Veep. When Georgia Pritchett found herself lost for words--a bit of a predicament for a comedy writer--she turned to a therapist, who suggested she try writing down some of the things that worried her. But instead of a grocery list of concerns, Georgia wrote this book. A natural born worrywart, Georgia's life has been defined by her quirky anxiety. During childhood, she was agitated about the monsters under her bed (Were they comfy enough?). Going into labor, she fretted about making a fuss ("Sorry to interrupt, but the baby is coming out of my body," I said politely). Winning a prestigious award, she agonized over receiving free gifts after the ceremony (It was an excruciating experience. Mortifying). Soul-baring yet lighthearted, poignant yet written with a healthy dose of self-deprecation, My Mess Is a Bit of a Life is a tour through the carnival funhouse of Georgia's life, from her anxiety-ridden early childhood where disaster loomed around every corner (When I was little I used to think that sheep were clouds that had fallen to earth. On cloudy days I used to worry that I would be squashed by a sheep), through the challenges of breaking into an industry dominated by male writers, to the exquisite terror (and incomparable joy) of raising children. Delightfully offbeat, painfully honest, full of surprising wonders, and delivering plenty of hilarious, laugh-out-loud moments, My Mess Is a Bit of a Life reveals a talented, vulnerable, and strong woman in all her wisecracking weirdness, and makes us love it--and her--too.
The Neuroscientist Who Lost Her Mind by
In the tradition of My Stroke of Insight and Brain on Fire, this powerful memoir recounts Barbara Lipska's deadly brain cancer and explains its unforgettable lessons about the brain and mind. Neuroscientist Lipska was diagnosed early in 2015 with metastatic melanoma in her brain's frontal lobe. As the cancer progressed and was treated, she experienced behavioral and cognitive symptoms connected to a range of mental disorders, including dementia and her professional specialty, schizophrenia. Lipska's family and associates were alarmed by the changes in her behavior, which she failed to acknowledge herself. Gradually, after a course of immunotherapy, Lipska returned to normal functioning, amazingly recalled her experience, and through her knowledge of neuroscience identified the ways in which her brain changed during treatment. Lipska admits her condition was unusual; after recovery she was able to return to her research and resume her athletic training and compete in a triathalon. Most patients with similar brain cancers rarely survive to describe their ordeal. Lipska's memoir, coauthored with journalist Elaine McArdle, shows that strength and courage but also an encouraging support network are vital to recovery.
On Edge by
A celebrated science and health reporter offers a wry, bracingly honest account of living with anxiety. A racing heart. Difficulty breathing. Overwhelming dread. Andrea Petersen was first diagnosed with ananxiety disorderat the age of twenty, but she later realized that she had been experiencing panic attacks since childhood. With time her symptoms multiplied. She agonized over every odd physical sensation. She developed fears of driving on highways, going to movie theaters, even licking envelopes. Although having a name for her condition was an enormous relief, it was only the beginning of a journey to understand and master it-one that took her from psychiatrists' offices to yoga retreats to the Appalachian Trail. Woven into Petersen's personal story is a fascinating look at the biology of anxiety and the groundbreaking research that might point the way to new treatments. She compares psychoactive drugs to non-drug treatments, including biofeedback and exposure therapy. And she explores the role that genetics and the environment play in mental illness, visiting top neuroscientists and tracing her family history-from her grandmother, who, plagued by paranoia,once tried to burn down her own house, to her young daughter, in whom Petersen sees shades of herself. Brave and empowering, this is essential reading for anyone who knows what it means to live on edge.
Patho-logical by
AN APPLE BOOKS PICK OF THE MONTH "Masterfully written, distinctively researched, deeply humane . . . Genius."--ANTHONY SWOFFORD, author of Jarhead "A major contribution . . . A necessary book."--JOHANN HARI, author of Lost Connections "This book is a triumph of the spirit and the flesh."--ELIZA GRISWOLD, Pulitzer Prize-winning author of Amity and Prosperity In this stunning debut--both a memoir and a work of investigative journalism--writer Sarah Fay explores the ways we pathologize human experiences. Over thirty years, doctors diagnosed Sarah Fay with six different mental illnesses--anorexia, major depressive disorder (MDD), anxiety disorder, attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and bipolar disorder.Pathological is the gripping story of what it was like to live with those diagnoses, and the crippling impact each had on her life. It is also a rigorous investigation into the Diagnostic and Statistical Manual of Mental Disorders (DSM)--psychiatry's "bible," the manual from which all mental illness diagnoses come. Yet as Fay found out, some of our most prominent psychiatrists have been trying to warn us that the DSM is fiction sold to the public as fact. In Pathological, former advisory editor at The Paris Review and award-winning writer Fay calls for a new conversation about mental health diagnosis, one based on rigorous transparency. With exquisite detail and a precise presentation of fact, she digs up her own life at the root to finally ask, Is a diagnosis a lifeline or a self-fulfilling prophecy? Powerful, mesmerizing, and unputdownable, Pathological sits alongside the other brave and inspiring classics of our time that explore a more intelligent, forgiving, and nuanced approach to human suffering.
The Plant Hunter by
A leading medical ethnobotanist tells us the story of her quest to develop new ways to fight illness and disease through the healing powers of plants in this uplifting and adventure-filled memoir. Plants are the basis for an array of lifesaving and health-improving medicines we all now take for granted. Ever taken an aspirin? Thank a willow tree for that. What about life-saving medicines for malaria? Some of those are derived from cinchona and wormwood. In today's world of synthetic pharmaceuticals, scientists and laypeople alike have lost this connection to the natural world. But by ignoring the potential of medicinal plants, we are losing out on the opportunity to discover new life-saving medicines needed in the fight against the greatest medical challenge of this century- the rise of the post-antibiotic era. Antibiotic-resistant microbes plague us all. Each year, 700,000 people die due to these untreatable infections; by 2050, 10 million annual deaths are expected unless we act now. No one understands this better than Dr. Cassandra Quave, whose groundbreaking research as a leading medical ethnobotanist--someone who identifies and studies plants that may be able to treat antimicrobial resistance and other threatening illnesses--is helping to provide clues for the next generation of advanced medicines. InThe Plant Hunter, Dr. Quave weaves together science, botany, and memoir to tell us the extraordinary story of her own journey. Traveling by canoe, ATV, mule, airboat, and on foot, she has conducted field research in the flooded forests of the remote Amazon, the murky swamps of southern Florida, the rolling hills of central Italy, isolated mountaintops in Albania and Kosovo, and volcanic isles arising out of the Mediterranean-all in search of natural compounds, long-known to traditional healers, that could help save us all from the looming crisis of untreatable superbugs. And as a person born with multiple congenital defects of her skeletal system, she's done it all with just one leg. Filled with grit, tragedy, triumph, awe, and scientific discovery, her story illuminates how the path forward for medical discovery may be found in nature's oldest remedies.
The Pretty One by
From the disability rights advocate and creator of the #DisabledAndCute viral campaign, a thoughtful, inspiring, and charming collection of essays exploring what it means to be black and disabled in a mostly able-bodied white America. Keah Brown loves herself, but that hadn't always been the case. Born with cerebral palsy, her greatest desire used to be normalcy and refuge from the steady stream of self-hate society strengthened inside her. But after years of introspection and reaching out to others in her community, she has reclaimed herself and changed her perspective. In The Pretty One, Brown gives a contemporary and relatable voice to the disabled--so often portrayed as mute, weak, or isolated. With clear, fresh, and light-hearted prose, these essays explore everything from her relationship with her able-bodied identical twin (called "the pretty one" by friends) to navigating romance; her deep affinity for all things pop culture--and her disappointment with the media's distorted view of disability; and her declaration of self-love with the viral hashtag #DisabledAndCute. By "smashing stigmas, empowering her community, and celebrating herself" (Teen Vogue), Brown and The Pretty One aims to expand the conversation about disability and inspire self-love for people of all backgrounds.
The Rapids by
Writing and mental illness make excellent bedfellows, for better or worse. The Rapids is an extraordinary personal memoir peppered with film and literary criticism, as well as family history. With reflections on artists such as Carrie Fisher, Kanye West, Robert Lowell, Delmore Schwartz, Paul Thomas Anderson, and Spalding Gray, Twyford-Moore also looks at the condition in our digital world, where someone's manic episode can unfold live in real time, watched by millions. His own story, told unflinchingly, is shocking and sometimes blackly comic. It gives the book an edge that is not always comfortable but full of insight and empathy. The Rapids manages to be both a wild ride and introspective at once, exploring a condition that touches thousands of people, directly or indirectly.
Recovering Bodies
This text focuses on the writing by and about people with illness or disability - and in particular HIV/AIDS, breast cancer, deafness and paralysis - challenging the stigmas attached to their conditions by telling their lives in their own ways and on their own terms. Discussing memoirs, diaries, collaborative narratives, photo documentaries, essays and other forms of life writing, G. Thomas Couser shows that these books are not primarily records of medical conditions; they are a means for individuals to recover their bodies (or those of loved ones) from marginalization and impersonal medical discourse. Responding to the recent growth of illness and disability narratives in the United States - such works as Juliet Wittman's ""Breast Cancer Journal"", John Hockenberry's ""Moving Violations"", Paul Monette's ""Borrowed Time: An AIDS Memoir"" and Lou Ann Walker's ""A Loss for Words: The Story of Deafness in a Family"" - Couser addresses questions of both poetics and politics. He examines why and under what circumstances individuals choose to write about illness or disability, what role plot plays in such narratives; how and whether closure is achieved; who assumes the prerogative of narration; which conditions are most often represented; and which literary conventions lend themselves to representing particular conditions. By tracing the development of new subgenres of personal narrative in our time, this book explores how explicit consideration of illness and disability has enriched the repertoire of life writing. In addition, Couser's discussion of medical discourse joins the current debate about whether the biomedical model is entirely conducive to human care for ill and disabled people. With its sympathetic critique of the testimony of those most affected by these conditions, ""Recovering Bodies"" contributes to an understanding of the relations among bodily dysfunction, cultural conventions and identity in contemporary America.
The Scar by
At the age of twenty-seven, married, living in New York, and working in book design, Mary Cregan gives birth to her first child, a daughter she names Anna. But it's apparent that something is terribly wrong, and two days later, Anna dies--plunging Cregan into suicidal despair.Decades later, sustained by her work, a second marriage, and a son, Cregan reflects on this pivotal experience and attempts to make sense of it. She weaves together literature and research with details from her own ordeal--and the still visible scar of her suicide attempt--while also considering her life as part of the larger history of our understanding of depression. In fearless, candid prose, Cregan examines her psychotherapy alongside early treatments of melancholia, weighs the benefits of shock treatment against its terrifying pop culture depictions, explores the controversy around antidepressants and how little we know about them--even as she acknowledges that the medication saved her life--and sifts through the history of the hospital where her recovery began.Perceptive, intimate, and elegantly written, The Scar vividly depicts the pain and ongoing stigma of clinical depression, giving greater insight into its management and offering hope for those who are suffering.
Seven Wheelchairs by
In 1959, seventeen-year-old Gary Presley was standing in line, wearing his favorite cowboy boots and waiting for his final inoculation of Salk vaccine. Seven days later, a bad headache caused him to skip basketball practice, tell his dad that he was too ill to feed the calves, and walk from barn to bed with shaky, dizzying steps. He never walked again. By the next day, burning with the fever of polio, he was fastened into the claustrophobic cocoon of the iron lung that would be his home for the next three months. Set among the hardscrabble world of the Missouri Ozarks, sizzling with sarcasm and acerbic wit, his memoir tells the story of his journey from the iron lung to life in a wheelchair. Presley is no wheelchair hero, no inspiring figure preaching patience and gratitude. An army brat turned farm kid, newly arrived in a conservative rural community, he was immobilized before he could take the next step toward adulthood. Prevented, literally, from taking that next step, he became cranky and crabby, anxious and alienated, a rolling responsibility crippled not just by polio but by anger and depression, "a crip all over, starting with the brain." Slowly, however, despite the limitations of navigating in a world before the Americans with Disabilities Act, he builds an independent life. Now, almost fifty years later, having worn out wheelchair after wheelchair, survived post-polio syndrome, and married the woman of his dreams, Gary has redefined himself as Gimp, more ready to act out than to speak up, ironic, perceptive, still cranky and intolerant but more accepting, more able to find joy in his family and his newfound religion. Despite the fact that he detests pity, can spot condescension from miles away, and refuses to play the role of noble victim, he writes in a way that elicits sympathy and understanding and laughter. By giving his readers the unromantic truth about life in a wheelchair, he escapes stereotypes about people with disabilities and moves toward a place where every individual is irreplaceable.
The Shape of Sound by
The Shape of Sound is a lyrical and profound memoir from the acclaimed deaf poet, Fiona Murphy, about her life spent hiding from deafness and her eventual emergence into an extraordinary community and culture. "I devoured this in a day, fascinated, enlightened, moved."--Helen Garner, author of This House of Grief Blending memoir with observations on the healthcare industry, The Shape of Sound is a story about the corrosive power of secrets, stigma and shame, and how deaf experiences and disability are shaped by economics, social policy, medicine and societal expectations. Fearing the ramifications of exposure, Fiona kept her Deafness a secret for over twenty-five years. Desperate to hold onto a career she'd worked hard to pursue, she tried hearing aids but was shocked by how the world sounded. She vowed never to use them again. After an accident to her hand, she discovered that sign language could change her life, and that Deaf culture could be part of her identity. Just as Fiona thought she was beginning to truly accept her body, she was diagnosed with a rare condition that causes the bones of the ears to harden. She was steadily losing her residual hearing. The news left her reeling. This memoir about Deafness and invisible illness is a revelation.
Sitting Pretty by
A memoir-in-essays from disability advocate and creator of the Instagram account @sitting_pretty Rebekah Taussig, processing a lifetime of memories to paint a beautiful, nuanced portrait of a body that looks and moves differently than most. Growing up as a paralyzed girl during the 90s and early 2000s, Rebekah Taussig only saw disability depicted as something monstrous (The Hunchback of Notre Dame), inspirational (Helen Keller), or angelic (Forrest Gump). None of this felt right; and as she got older, she longed for more stories that allowed disability to be complex and ordinary, uncomfortable and fine, painful and fulfilling. 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. By exploring this truth in poignant and lyrical essays, Taussig illustrates the need for more stories and more voices to understand the diversity of humanity. 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 an entirely different story.
The Song of Our Scars by
"One evening, while completing his medical training in Pakistan, Haider Warraich went to the hospital gym to work out. He was in the middle of a set when he heard the sound of a loud click in his back. His body went limp, the weight held above his chest came crashing down, and Haider was rushed into the hospital, now suddenly a patient where just a few hours earlier he had been a doctor. A decade later, Warraich is now an internist in Boston, and pain is a way of life. As he treats the suffering of his patients, he battles with his own chronic, occasionally debilitating pain. Neither he nor his colleagues have been able to understand its source, and he has come dangerously close to an opioid addiction trying to manage it. Eventually, Haider began to wonder whether the problem was the pain, or the way it is treated. In The Song of Our Scars, Haider Warraich offers a history of pain, both as a personal experience and as a medical ailment. We have only recently begun to treat pain as a purely physical sensation, and while the goal was to be able to offer safer, more reliable treatments, Warraich finds that it has actually had the opposite effect. Modern attitudes about pain paved the way for the opioid epidemic and made an already biased system of healthcare more racist, sexist, and classist: Your pain is more likely to be minimized or dismissed if you are a woman or a person of color, for example, and while the rich are offered ample assistance in managing opioid prescriptions, the poor are often left to fend for themselves. The medical community's attitudes toward pain have inspired us to make arbitrary and ill-supported distinctions between the 'real' pain of the body and the 'fake' pain that's in your head. And they have blinded us to the possibility that sometimes learning to live with your pain is better than trying to eliminate it. In the end, Warraich considers the possibility that pain, particularly chronic pain, is sometimes more usefully treated as an emotion than a sensation. A deeply felt investigation from a rising talent, The Song of Our Scars is both a trenchant indictment of a system gone astray and an empathic plea for a more holistic understanding of the human body"-- Provided by publisher.
Too Late to Die Young by
With a voice as disarmingly bold, funny, and unsentimental as its author, a thoroughly unconventional memoir that shatters the myth of the tragic disabled life Harriet McBryde Johnson isn't sure, but she thinks one of her earliest memories was learning that she will die. The message came from a maudlin TV commercial for the Muscular Dystrophy Association that featured a boy who looked a lot like her. Then as now, Johnson tended to draw her own conclusions. In secret, she carried the knowledge of her mortality with her and tried to sort out what it meant. By the time she realized she wasn't a dying child, she was living a grown-up life, intensely engaged with people, politics, work, struggle, and community.Due to a congenital neuromuscular disease, Johnson has never been able to walk, dress, or bathe without assistance. With help, however, she manages to take on the world. From the streets of Havana, where she covers an international disability rights conference, to the floor of the Democratic National Convention in Chicago, to an auditorium at Princeton, where she defends her right to live against philosopher Peter Singer, she lives a life on her own terms. And along the way, she defies and debunks every popular assumption about disability.This unconventional memoir opens with a lyrical meditation on death and ends with a surprising sermon on pleasure. In between, we get the tales Johnson most enjoys telling from her own life. This is not a book "about disability" but it will surprise anyone who has ever imagined that life with a severe disability is inherently worse than another kind of life.
Trainwreck by
Growing up a privileged upper middle class kid in New York City, Jeff Nichols should have had it all. Instead, with a litany of learning disabilities and conditions ranging from ADD and dyslexia to Tourette's, there was no smooth sailing for him. After bouncing from elite private school to elite private school, he lands at Hobart College, where he drinks everything that is offered to him and tries every drug known to man, earning the nickname "Spicoli" (after the stoner from Fast Times at Ridgemont High). Miraculously, he graduates and is offered gainful employment at Merrill Lynch, where he manages to last a year until being unceremoniously dumped with the words, "You are weird, incompetent, and often stink of booze." And that's when Jeff discovers AA . . . mainly as an ideal forum for working on material for a burgeoning stand-up career and meeting girls. His string of disastrous odd jobs (dictionary salesman, Broadway usher, substitute teacher in NYC public schools) ultimately leads him to discover his heart's desire: charter fishing. When Jeff decides to document his misadventures and is turned down by every literary agent in town, he perseveres. Things then take a crazy turn when a leading indie production company buys rights to his unpublished manuscript, and his life as a loveable screw-up is brought to the screen. Hilarious, kooky, and oddly inspiring, Trainwreckis proof that a life disastrously lived can still turn out beyond your wildest imaginings.
We Are All Perfectly Fine by
When we need help, we count on doctors to put us back together. But what happens when doctors fall apart? Jillian Horton, a general internist, has no idea what to expect during her five-day retreat at Chapin Mill, a Zen centre in upstate New York. She just knows she desperately needs a break. At first she is deeply uncomfortable with the spartan accommodations, silent meals and scheduled bonding sessions. But as the group struggles through awkward first encounters and guided meditations, something remarkable happens: world-class surgeons, psychiatrists, pediatricians and general practitioners open up and share stories about their secret guilt and grief, as well as their deep-seated fear of falling short of the expectations that define them. Horton realizes that her struggle with burnout is not so much personal as it is the result of a larger system failure, and that compartmentalizing your most difficult emotions--a coping strategy that is drilled into doctors--is not useful unless you face these emotions too. Jillian Horton throws open a window onto the flawed system that shapes medical professionals, revealing the rarely acknowledged stresses that lead doctors to depression and suicide, and emphasizing the crucial role of compassion not only in treating others, but also in taking care of ourselves.
What My Bones Know by
A searing memoir of reckoning and healing by acclaimed journalist Stephanie Foo, investigating the little-understood science behind complex PTSD and how it has shaped her life "Achingly exquisite . . . providing real hope for those who long to heal."--Lori Gottlieb, New York Times bestselling author of Maybe You Should Talk to Someone ONE OF THE BEST BOOKS OF THE YEAR: The Washington Post, Cosmopolitan, NPR, Mashable, She Reads, Publishers Weekly By age thirty, Stephanie Foo was successful on paper: She had her dream job as an award-winning radio producer at This American Life and a loving boyfriend. But behind her office door, she was having panic attacks and sobbing at her desk every morning. After years of questioning what was wrong with herself, she was diagnosed with complex PTSD--a condition that occurs when trauma happens continuously, over the course of years. Both of Foo's parents abandoned her when she was a teenager, after years of physical and verbal abuse and neglect. She thought she'd moved on, but her new diagnosis illuminated the way her past continued to threaten her health, relationships, and career. She found limited resources to help her, so Foo set out to heal herself, and to map her experiences onto the scarce literature about C-PTSD. In this deeply personal and thoroughly researched account, Foo interviews scientists and psychologists and tries a variety of innovative therapies. She returns to her hometown of San Jose, California, to investigate the effects of immigrant trauma on the community, and she uncovers family secrets in the country of her birth, Malaysia, to learn how trauma can be inherited through generations. Ultimately, she discovers that you don't move on from trauma--but you can learn to move with it. Powerful, enlightening, and hopeful, What My Bones Know is a brave narrative that reckons with the hold of the past over the present, the mind over the body--and examines one woman's ability to reclaim agency from her trauma.
The Year of the Horses by
"At the age of thirty-seven, Courtney Maum finds herself in an indoor arena in Connecticut, moments away from stepping back into the saddle. For her, this is not just a riding lesson, but a last-ditch attempt to pull herself back from the brink even though riding is a relic from the past she walked away from. She hasn't been on or near a horse in over thirty years. Although Courtney does know what depression looks like, she finds herself refusing to admit, at this point in her life, that it could look like her: a woman with a privileged past, a mortgage, a husband, a healthy child, and a published novel. That she feels sadness is undeniable, but she feels no right to claim it. And when both therapy and medication fail, Courtney returns to her childhood passion of horseback riding as a way to recover the joy and fearlessness she once had access to as a young girl. As she finds her way, once again, through the physical and emotional landscapes of riding, Courtney becomes reacquainted with herself not only as a rider but as a mother, wife, daughter, writer, and woman. Alternating timelines and braided with historical portraits of women and horses alongside history's attempts to tame both parties, The Year of the Horses is an inspiring love letter to the power of animals-and humans-to heal the mind and the heart"-- Provided by publisher.
Year of the Tiger by
NATIONAL BESTSELLER . ONE OF USA TODAY'S MUST-READ BOOKS . This groundbreaking memoir offers a glimpse into an activist's journey to finding and cultivating community and the continued fight for disability justice, from the founder and director of the Disability Visibility Project "Alice Wong provides deep truths in this fun and deceptively easy read about her survival in this hectic and ableist society." -Selma Blair, bestselling author of Mean Baby In Chinese culture, the tiger is deeply revered for its confidence, passion, ambition, and ferocity. That same fighting spirit resides in Alice Wong. Drawing on a collection of original essays, previously published work, conversations, graphics, photos, commissioned art by disabled and Asian American artists, and more, Alice uses her unique talent to share an impressionistic scrapbook of her life as an Asian American disabled activist, community organizer, media maker, and dreamer. From her love of food and pop culture to her unwavering commitment to dismantling systemic ableism, Alice shares her thoughts on creativity, access, power, care, the pandemic, mortality, and the future. As a self-described disabled oracle, Alice traces her origins, tells her story, and creates a space for disabled people to be in conversation with one another and the world. Filled with incisive wit, joy, and rage, Wong's Year of the Tiger will galvanize readers with big cat energy.
(EBOOK) Disability Experiences: Memoirs, Autobiogrpahies, and Other Personal Narratives by
Disability Experience: Memoirs, Autobiographies, and Other Personal Narratives presents essays on 200 narrative works written by persons with disabilities. The disabilities covered are mostly physical, but psychological/psychiatric conditions, developmental/intellectual impairments, and addiction are also included. While most are written by disabled persons themselves, a small number of biographies and family memoirs (such as those written by parents or spouses) were included when the advisory board felt they were important contributions to communicating the disability experience.
The works date from as early as 1470 to as recent as 2018. While most of the authors are from the US, one-third of the works are by authors from elsewhere around the globe. Care was also given to represent a wide range of other cultures, heritage, and lifestyles, in areas such as religion, sexual orientation, gender identification, color, and other factors that, along with disability, constitute intersectional experiences. At least half the works included represent such at least one diversity factor.
All entries are signed, and each begins with a brief summary of the work and list of key information. The body of each essay provides an overview of the work and the subject¿s life, and discussion of historical and cultural context, themes, and critical reception. All essays have one or two sidebars and a bibliography; half also have a photo.
The work includes a pedagogical piece from the editor that discusses ways the contents can be used in the classroom. This is followed by a three-part thematic outline organizing the entries by disabilities and conditions that are represented in the works; by formats other than autobiography or memoir, such as graphic memoir or poetry; and by other themes, both disability-related and other.
The volume also includes a subject index and a list of other recommended memoirs and anthologies not covered within.
Yoga by
Named a Best Book of 2022 by The Guardian This is a book about yoga. Or at least, it was. Emmanuel Carrère is a renowned writer. After decades of emotional upheaval, he has begun to live successfully--he is healthy; he works; he loves. He practices meditation, striving to observe the world without evaluating it. In this state of heightened awareness, he sets out for a ten-day silent retreat in the French heartland, leaving his phone, his books, and his daily life behind. But he's also gathering material for his next book, which he thinks will be a pleasant, useful introduction to yoga. Four days later, there's a tap on the window: something has happened. Forced to leave the retreat early, he returns to a Paris in crisis. Life is derailed. His city is in turmoil. His work-in-progress falters. His marriage begins to unravel, as does his entanglement with another woman. He wavers between opposites--between self-destruction and self-control; sanity and madness; elation and despair. The story he has told about himself falls away. And still, he continues to live. This is a book about one man's desire to get better, and to be better. It is laced with doubt, animated by the dangerous interplay between what is fiction and what is real. Loving, humorous, harrowing and profound, Yoga hurls us towards the outer edges of consciousness, where, finally, we can see things as they really are.
(EBOOK) Autistic Community and the Neurodiversity Movement : Stories from the Frontline by
This open access book marks the first historical overview of the autism rights branch of the neurodiversity movement, describing the activities and rationales of key leaders in their own words since it organized into a unique community in 1992. Sandwiched by editorial chapters that include critical analysis, the book contains 19 chapters by 21 authors about the forming of the autistic community and neurodiversity movement, progress in their influence on the broader autism community and field, and their possible threshold of the advocacy establishment. The actions covered are legendary in the autistic community, including manifestos such as “Don’t Mourn for Us”, mailing lists, websites or webpages, conferences, issue campaigns, academic project and journal, a book, and advisory roles. These actions have shifted the landscape toward viewing autism in social terms of human rights and identity to accept, rather than as a medical collection of deficits and symptoms to cure.
(EBOOK) Bioethics and Disability by
Bioethics and Disability provides tools for understanding the concerns, fears and biases that have convinced some people with disabilities that the health care setting is a dangerous place and some bioethicists that disability activists have nothing to offer bioethics. It wrestles with the charge that bioethics as a discipline devalues the lives of persons with disabilities, arguing that reconciling the competing concerns of the disability community and the autonomy-based approach of mainstream bioethics is not only possible, but essential for a bioethics committed to facilitating good medical decision making and promoting respect for all persons, regardless of ability. Through in-depth case studies involving newborns, children and adults with disabilities, it proposes a new model for medical decision making that is both sensitive to and sensible about the fact of disability in medical cases.
(EBOOK) Choosing Children by
Progress in genetic and reproductive technology now offers us the possibility of choosing what kinds of children we do and don't have. Should we welcome this power, or should we fear its implications? There is no ethical question more urgent than this: we may be at a turning-point in the history of humanity. The renowned moral philosopher and best-selling author Jonathan Glover shows us how we might try to answer this question, and other provoking and disturbingquestions to which it leads.Surely parents owe it to their children to give them the best life they can? Increasingly we are able to reduce the number of babies born with disabilities and disorders. But there is a powerful new challenge to conventional thinking about the desirability of doing so: this comes from the voices of those who have these conditions. They call into question the very definition of disability. How do we justify trying to avoid bringing people like them into being?In 2002 a deaf couple used sperm donated by a friend with hereditary deafness to have a deaf baby: they took the view that deafness is not a disability, but a difference. Starting with the issues raised by this case, Jonathan Glover examines the emotive idea of 'eugenics', and the ethics of attempting to enhance people, for non-medical reasons, by means of genetic choices. Should parents be free, not only to have children free from disabilities, but to choose, for instance, the colour of theireyes or hair? This is no longer a distant prospect, but an existing power which we cannot wish away. What impact will such interventions have, both on the individuals concerned and on society as a whole?Should we try to make general improvements to the genetic make-up of human beings? Is there a central core of human nature with which we must not interfere?This beautifully clear book is written for anyone who cares about the rights and wrongs of parents' choices for their children, anyone who is concerned about our human future. Glover handles these uncomfortable questions in a controversial but always humane and sympathetic manner.
(EBOOK) Disability, Health, Law, and Bioethics by
Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. In this collection, the authors explore the impact that the philosophical framing of disability can have on public policy questions, in the clinic, in the courtroom, and elsewhere. They examine the implications of this understanding for legal and policy approaches to disability, strategies for allocating and accessing health care, the implementation of the Americans with Disabilities Act, health care rights, and other legal tools designed to address discrimination. This volume should be read by anyone seeking a balanced view of disability and an understanding of the connection between the framing of disability and policies that have a real-world impact on individuals.
(EBOOK) Disability ethics : a framework for practitioners, professionals and policy makers by
The social arrangements with which we are familiar work fairly well for most of us most of the time. We work, we earn, we pay taxes. We engage professionals when we need their advice. We expect that there will be doctors whose expertise can be relied upon if we are ill, that there will be schools staffed with knowledgeable teachers and courts presided over by fair judges. We vote for politicians who offer policies we favour. We require government to provide us with security, protect our freedom and assist those of us who cannot help themselves. These social arrangements rest on some shared assumptions and values. They assume that people are, by and large, free, self-determining persons who respect each other's rights and independence, and co-operate rationally and productively with each other. Our social arrangements are challenged when this assumption does not hold. What policies should government have in place for people who are not independent, or not rational, or not co-operative, or not productive? If, by some catastrophe, through accident, disability or mental illness, you became such a person, how should you be dealt with by professionals and government services? If, on the other hand, you are a professional, how should you go about making decisions for clients who are not well placed to make decisions for themselves? Are there standards of professional ethics that can deal with this situation? Are there ethical standards that can be applied by managers of service organizations, or by policy writers, or by government officials? Are there ethical standards that concerned citizens should demand of government, of service organizations and of professionals who provide for vulnerable people? Drawing on the stories of people with disabilities and their service providers, Paul Jewell explores ethical theories, tests their practical application, and offers strategies essential to practitioners, managers, policy-makers and professionals who provide services to people with disabilities.
(EBOOK) Family-Centered Care in Childhood Disability: Theory, Research, Practice by
The book presents a comprehensive and well-organized overview of the family-centered care approaches for child disability, and provides multi-professional contributions from the fields of psychiatry, psychology, and rehabilitation science. The volume is divided into three main sections, that highlights the theoretical basis, research evidence, and clinical implications of the family-centered approach to child care. Active engagement of parents in the therapeutic and rehabilitative journey of their children with disability is key to the success of early interventions and their long-term benefits. Research and clinical experiences in healthcare services around the world suggest that early supportive programs may promote children’s development at its best, with both clinical benefits and economic advantages for the healthcare system. This volume will appeal to a wide readership, from clinicians and researchers in child disability and rehabilitation, to students and professionals in the fields of psychiatry, psychology, and rehabilitation science.
(EBOOK) Latin American Interdisciplinary Perspectives on Bioethics and Disabilities by
This book provides a critical analysis of the experiences of people with disabilities in Latin America. It covers a wide range of topics related to intellectual and psychosocial disabilities. Written by Latin American researchers and adopting an interdisciplinary perspective, it provides an original sociocultural contribution to bioethics and disability studies literature. It presents an in-depth overview of philosophical, ethical, legal, political and social issues. At the same time, it offers a contribution to the global scientific community inasmuch it discusses theoretical references from South America in connection with those from Europe and the United States. The basic questions dealt with range from criteria for human flourishing to questions of philosophy of mind, and neuroethics through phenomenological and aesthetic approaches to intellectual and psychosocial disabilities. The legal and political investigations explore the rights of those affected and the processes of their self-organization. The authors address the dynamics of medicalization and demedicalization, the practices of psychiatric institutionalization and the treatment of children with antipsychotics. This book appeals to psychologists, social scientists, bioethicists, healthcare personnel, philosophers, and lawyers working with cases related to people with disabilities.
(EBOOK) Philosophical Reflections on Disability
This project draws together the diverse strands of the debate regarding disability in a way never before combined in a single volume. After providing a representative sampling of competing philosophical approaches to the conceptualization of disability as such, the volume goes on to address such themes as the complex interplay between disability and quality of life, questions of social justice as it relates to disability, and the personal dimensions of the disability experience.By explicitly locating the discussion of various applied ethical questions within the broader theoretical context of how disability is best conceptualized, the volume seeks to bridge the gap between abstract philosophical musings about the nature of disease, illness and disability found in much of the philosophy of medicine literature, on the one hand, and the comparatively concrete but less philosophical discourse frequently encountered in much of the disability studies literature. It also critically examines various claims advanced by disability advocates, as well as those of their critics.In bringing together leading scholars in the fields of moral theory, bioethics, and disability studies, this volume makes a unique contribution to the scholarly literature, while also offering a valuable resource to instructors and students interested in a text that critically examines and assesses various approaches to some of the most vexing problems in contemporary social and political philosophy.
(EBOOK) Reconsidering Intellectual Disability: L'Arche, Medical Ethics, and Christian Friendship by
Drawing on the controversial case of "Ashley X," a girl with severe developmental disabilities who received interventionist medical treatment to limit her growth and keep her body forever small--a procedure now known as the "Ashley Treatment"--Reconsidering Intellectual Disability explores important questions at the intersection of disability theory, Christian moral theology, and bioethics. What are the biomedical boundaries of acceptable treatment for those not able to give informed consent? Who gets to decide when a patient cannot communicate their desires and needs? Should we accept the dominance of a form of medicine that identifies those with intellectual impairments as pathological objects in need of the normalizing bodily manipulations of technological medicine? In a critical exploration of contemporary disability theory, Jason Reimer Greig contends that L'Arche, a federation of faith communities made up of people with and without intellectual disabilities, provides an alternative response to the predominant bioethical worldview that sees disability as a problem to be solved. Reconsidering Intellectual Disability shows how a focus on Christian theological tradition's moral thinking and practice of friendship with God offers a way to free not only people with intellectual disabilities but all people from the objectifying gaze of modern medicine. L'Arche draws inspiration from Jesus's solidarity with the "least of these" and a commitment to Christian friendship that sees people with profound cognitive disabilities not as anomalous objects of pity but as fellow friends of God. This vital act of social recognition opens the way to understanding the disabled not as objects to be fixed but as teachers whose lives can transform others and open a new way of being human.
(EBOOK) The Beautiful Unwanted by
Prenatal genetic testing has changed the circumstances under which parents choose what pregnancies to carry to term. Some have predicted that as a result of parents' choices, people with Down syndrome will disappear from our communities in the near future. Chris Kaposy, a bioethicist who has a son with Down syndrome, reflects on parenting his son in the midst of this supposed disappearance. Writing from a pro-choice, disability-positive perspective, Kaposy presents some of the decades-old bioethical controversies involving children with Down syndrome, illustrating a prehistory of disappearance that has shaped current attitudes toward intellectual disability. Layered throughout this history are elements of Kaposy's personal experience with his son and family. Transcending monograph and memoir, The Beautiful Unwanted draws creatively upon the past and the present, upon myth, history, science, and personal stories, to present the world of families that include children with Down syndrome from a series of uncommon perspectives. This account encompasses the changeling myths of Newfoundland, the "discovery" of Down syndrome by John Langdon Down and Jérôme Lejeune, and the twentieth-century experience of institutionalization, as well as recent advances in reproductive technology. We must recognize that we have some control over the future, Kaposy argues, and we must ask what kind of future we want for those who have intellectual disabilities. The Beautiful Unwanted poses this question in a way that is engaging, often bewildering, and always fascinating.
(EBOOK)The Case of Terri Schiavo: Ethics, Politics, and Death in the 21st Century by
The case of Terri Schiavo, a young woman who spent 15 years in a persistent vegetative state, has emerged as a watershed in debates over end-of-life care. While many observers had thought the right to refuse medical treatment was well established, this case split a family, divided a nation, and counfounded physicians, legislators, and many of the people they treated or represented. In renewing debates over the importance of advance directives, the appropriate role of artificial hydration and nutrition, and the responsibilities of family members, the case also became one of history's most extensively litigated health care disputes. The Case of Terri Schiavo assembles a team of first-hand participants and content experts to provide thoughtful and nuanced analyses. In addition to a comprehensive overview, the book includes contributions by Ms. Schiavo's guardian ad litem, a neurologist and lawyer who participated in the case, and scholars who examine issues related to litigation, faith, gender, and disability. The volume also includes a powerful dissent from the views of many scholars in the bioethics community. The book is intended for students, health care professionals, policy makers, and other in search of carefully reasoned analyses of the case that will shape our view of death and end-of-life medical care for decades.
(EBOOKS) Disability's Challenge to Theology by
This book uses insights from disability studies to understand in a deeper way the ethical implications that genetic technologies pose for Christian thought. Theologians have been debating genetic engineering for decades, but what has been missing from many theological debates is a deep concern for persons with genetic disabilities. In this ambitious and stimulating book, Devan Stahl argues that engagement with metaphysics and a theology of nature is crucial for Christians to evaluate both genetic science and the moral use of genetic technologies, such as human genetic engineering, gene therapy, genetic screenings, preimplantation genetic diagnosis, and gene editing. Using theological notions of creation ex nihilo and natural law alongside insights from disability studies, the book seeks to recast the debate concerning genetic well-being. Following the work of Stanley Hauerwas, Stahl proposes the church as the locus for reimagining disability in a way that will significantly influence the debates concerning genetic therapies. Stahl's project in "genethics" proceeds with an acute awareness of her own liberal Protestant tradition's early embrace of the eugenics movement in the name of scientific and medical advancement, and it constructively engages the Catholic tradition's metaphysical approach to questions in bioethics to surpass limitations to Protestant thinking on natural law. Christianity has all too frequently been complicit in excluding, degrading, and marginalizing people with disabilities, but the new Christian metaphysics developed here by way of disability perspectives provides normative, theological guidance on the use of genetic technologies today. As Stahl shows in her study, only by heeding the voices of people with disabilities can Christians remain faithful to the call to find Christ in "the least of these" and from there draw close to God. This book will be of interest to scholars in Christian ethics, bioethics, moral theology, and practical theology.
The Disability Bioethics Reader by
The Disability Bioethics Reader is the first introduction to the field of bioethics presented through the lens of critical disability studies and the philosophy of disability. Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability. Directly addressing this omission, this volume includes 36 chapters, most appearing here for the first time, that cover key areas pertaining to disability bioethics, such as: state-of-the-field analyses of modern medicine, bioethics, and disability theory health, disease, and the philosophy of medicine issues at the edge- and end-of-life, including physician-aid-in-dying, brain death, and minimally conscious states enhancement and biomedical technology invisible disabilities, chronic pain, and chronic illness implicit bias and epistemic injustice in health care disability, quality of life, and well-being race, disability, and healthcare justice connections between disability theory and aging, trans, and fat studies prenatal testing, abortion, and reproductive justice.　 The Disability Bioethics Reader, unlike traditional bioethics textbooks, also engages with decades of empirical and theoretical scholarship in disability studies--scholarship that spans the social sciences and humanities--and gives serious consideration to the history of disability activism.
Ethics and the Metaphysics of Medicine by
Explores the philosophical and practical ethical implications of a definition of health as a state that allows us to reach our goals. Definitions of health and disease are of more than theoretical interest. Understanding what it means to be healthy has implications for choices in medical treatment, for ethically sound informed consent, and for accurate assessment of policies or programs. This deeper understanding can help us create more effective public policy for health and medicine. It is notable that such contentious legal initiatives as the Americans with Disability Act and the Patients' Bill of Rights fail to define adequately the medical terms on which their effectiveness depends. In Ethics and the Metaphysics of Medicine, Kenneth Richman develops an "embedded instrumentalist" theory of health and applies it to practical problems in health care and medicine, addressing topics that range from the philosophy of science to knee surgery. "Embedded instrumentalist" theories hold that health is a match between one's goals and one's ability to reach those goals, and that the relevant goals may vary from individual to individual. This captures the normative implications of the term health while avoiding problematic relativism. Richman's embedded instrumentalism differs from other theories of health in drawing a distinction between the health of individuals as biological organisms and the health of individuals as moral agents. This distinction illuminates many difficulties in patient-provider communication and helps us understand conflicts between promoting health and promoting ethically permissible behavior. After exploring, expanding, and defending this theory in the first part of the book, Richman examines its ethical implications, discussing such concerns as the connection between medical beneficence and respect for autonomy, patient-provider communication, living wills, and clinical education.
Life, Love and Children by
Discussion of bioscience ethics requires understanding of the science that underpins biological systems impinging on our lives. Unencumbered by the formal structure of ethics, bioethics presents a forum for discussion of practical matters of individual and collective concern. This comprehensive text is a guide to the essentials of bioscience ethics and an interface between applied science and applied bioethics. Early chapters embrace topics affecting human reproduction - substance abuse and parenthood, aging gametes and congenital malformations, child abuse and its biological consequences. Intermediate chapters deal with end-of-life care and euthanasia, human fertility, assisted reproductive technologies, genetic engineering, and cloning. Remaining chapters challenge human-dominated ecosystems. Population growth, economic activity, and warfare - with its environmental consequences - are reviewed. A background section describes the evolution of ethical consciousness, explores the future, and proposes that the reworking of ethical boundaries can enhance mature decision-making in harmony with changing technology.
Practical Ethics in Occupational Health by
Explains the NHS as a political environment, and concentrates on understanding the relationships of power rather than on the role of apparent authority. The book presents a range of management frameworks and personal examples to illustrate what a primary-care-led NHS means.
Preventing Intellectual Disability by
This is the first book that covers comprehensively the difficult ethical issues involved in prevention of intellectual disability (learning disability, mental retardation). These issues are discussed both practically and theoretically in the light of four case examples drawn from real life. The cases demonstrate various issues raised by the concept of preventing intellectual disability, including definition, epidemiology, screening, and genetic counselling. Two major approach models (reproductive autonomy and public health) are scrutinised, and the practical issues of prevention are examined closely with respect to three syndromes (Down, Fragile X, and Aspartylugosaminuria). The question 'Why should intellectual disability be prevented?' is examined thoroughly at each stage. As a paediatrician and a philosopher, Dr Louhiala presents the issues in a way that is both user-friendly and philosophically sound.
Women, Medicine, Ethics and the Law by
This title was first published in 2002: A collection of articles focused on women within a general study of medicine, ethics and the law. Topics covered include: areas where the institutions of medicine, ethics and the law intersect in women's reproductive and sexual lives; the impact of legal policies and dominant ethical beliefs on many aspects of women's health; and the health practices and policies of bioethics and health law. The editors recognise that it is important not to lose sight of social differences other than gender, such as race, ethnicity, class, age, sexuality, religion, level of physical and mental ability, and family relationships. In their approach they seek to consider the lives and experiences of women as primary. Hence, they focus on the question of how women's encounters with the health-care system are structured by gender and other socially significant dimensions of their lives (rather than the question of how women differ from the male "norm").
Childhood disability in the United States, 2019 by 2020 progress report on national disability policy : increasing disability employment by 
