Prelims

Half Title Page

Disability and the Changing Contexts of Family and Personal Relationships

Series Title Page

Research in Social Science and Disability

Series Editors: Allison C. Carey and Sara E. Green

Recent Volumes:

Title Page

Research in Social Science and Disability Volume 15

Disability and the Changing Contexts of Family and Personal Relationships

Edited by

Gabriele Ciciurkaite

Utah State University, USA

And

Robyn Lewis Brown

University of Kentucky, USA

United Kingdom – North America – Japan – India – Malaysia – China

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Emerald Publishing Limited

Emerald Publishing, Floor 5, Northspring, 21-23 Wellington Street, Leeds LS1 4DL

First edition 2024

Editorial matter and selection © 2024 Gabriele Ciciurkaite and Robyn Lewis Brown.

Individual chapters © 2024 The authors.

Published under exclusive licence by Emerald Publishing Limited.

Chapter 2: The moral rights of the translator have been asserted.

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No part of this book may be reproduced, stored in a retrieval system, transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise without either the prior written permission of the publisher or a licence permitting restricted copying issued in the United Kingdom by The Copyright Licensing Agency and in the United States by The Copyright Clearance Center. Any opinions expressed in the chapters are those of the authors. While Emerald makes every effort to ensure the quality and accuracy of its content, Emerald makes no representation implied or otherwise, as to the chapters' suitability and application and disclaims any warranties, express or implied, to their use.

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN: 978-1-83753-221-6 (Print)

ISBN: 978-1-83753-220-9 (Online)

ISBN: 978-1-83753-222-3 (Epub)

ISSN: 1479-3547 (Series)

List of Figures and Tables

About the Editors

Gabriele Ciciurkaite, PhD, is an Associate Professor in the department of Sociology and Anthropology at Utah State University (USA). Within medical sociology, her work broadly focuses on one's social location and identity, and the ways they “get under the skin” to affect individual health and well-being. Her research is primarily grounded in quantitative methodologies and covers two broad topics: (1) the reciprocal association between social stress, nutrition-related issues, and mental health and (2) infectious and chronic disease prevention and management among vulnerable populations. More recently, her research has focused on experiences of social stressors related to the COVID-19 pandemic, disability-related discrimination, and mental health outcomes among individuals with functional limitation and self-reported disabilities.

Robyn Lewis Brown, PhD, is a Professor in the Department of Sociology and Director of the Health, Society, and Populations Program at the University of Kentucky. She is past chair of the American Sociological Association's Committee on the Status of Persons with Disabilities in Sociology (2017–2021) and has served in numerous leadership roles for the organization's Section on Disability and Society. A long-standing focus of her research is on gender- and disability-related experiences of stigma and discrimination, and collective trauma or macro-level stressors, which is reflected in her work on the psychological impact of the 9/11 attacks, the Great Recession and, more recently, the COVID-19 pandemic. This research emphasizes the impact of stress and adversity on the performance of family roles and the quality of family and personal relationships.

About the Contributors

Arshiya A. Baig, MD, MPH is an Associate Professor at the University of Chicago in the Department of Medicine. She is a primary care doctor and health services researcher. She currently serves as an Associate Director of the Chicago Center for Diabetes Translation Research. She has worked on partnered research projects to improve healthcare delivery to adults living with diabetes using community-engaged approaches. She coauthored a chapter on Family interventions to Improve Diabetes Outcomes for Adults for the New York Academy of Sciences.

Agnès Berthelot-Raffard, PhD, is an Associate Professor in critical disability studies at York University (School of Health Policy and Management), Canada. Dr Berthelot-Raffard is a political philosopher. She published in the fields of feminist ethics of care and vulnerability, Black feminist thoughts, and public health philosophy.

Patrick W. Corrigan, PhD, is a Distinguished Professor of Psychology at the Illinois Institute of Technology where he directs the Center for Health Equity, Education, and Research (IIT-CHEER.org). Prior to that, he was a Professor of Psychiatry at the University of Chicago where he directed the Center for Psychiatric Rehabilitation. He is editor of Stigma and Health, a journal of the American Psychological Association and recently authored The Power of Peer Providers in Mental Health Services. New York: Nova Science Publishers, Inc.

Patty Douglas, PhD, is an Associate Professor of Disability Studies and Inclusive Education, Brandon University, Canada. Dr Douglas's research intersects disability studies, mad studies, critical autism studies, mad mothering, decolonial studies, and intersectionality theory, employing creative and arts-based methodologies to transform deficit approaches to disability and difference in education. She leads the Re·Storying Autism in Education project, a multimedia storytelling initiative that reimagines autism, disability, and educational practice to affirm difference. A former special education teacher and mother of two sons, one with autism, Douglas identifies as neurodivergent, invisibly disabled, and a white settler committed to decolonizing research. Her first book, “Unmothering Autism: Ethical Disruptions and Affirming Care,” is under review at UBC Press. Douglas (she/her) is a dedicated scholar, educator, and advocate committed to challenging dominant narratives, promoting social justice, and fostering inclusive and equitable educational environments.

Ioanna Georgiou is a registered member of the Cyprus Association of Professional Social Workers and is currently pursuing PhD in Social Work at Frederick University (Cyprus). She is working as a Social Worker in the Social Reintegration and Rehabilitation Program for Victims of Trafficking in the Community at Social Welfare Services. Previously, she held the role of the Director of the Autistic Individuals and their families' Support Program at the Pancyprian Association of Individuals with Autism. She also contributed her expertise to various NGOs and private organizations, focusing on people with motor, neurodevelopmental disabilities, and older people.

Kelsey S. Goddard, PhD, BCBA, LBA, is a research associate at the Research and Training Center on Independent Living (RTC/IL) and the Institute for Health and Disability Policy Studies (IHDPS) at the University of Kansas. Dr Goddard is a certified and licensed behavioral psychologist and has relevant experience working with people with disabilities on independent living skills training, communication, and assessment and treatment of harmful behavior. Dr Goddard identifies as a person with a disability and strives to bring awareness to disability concerns through the intersection of research, policy, and advocacy.

Arlene Hache, Keepers of the Circle, Canada – is a dedicated advocate and community development worker focused on addressing homelessness, mental health, and gender-based violence, particularly among Indigenous populations. Her involvement with Keepers of the Circle, an Indigenous-led organization, showcases her commitment to revitalizing Indigenous culture and promoting self-determination. Arlene has participated in advocacy campaigns, community-based research, and policy development initiatives, contributing to positive changes for marginalized communities. She has authored articles and reports highlighting challenges faced by these communities and proposing innovative solutions. Arlene Hache (she/her) is a devoted advocate committed to uplifting marginalized communities, promoting social justice, and fostering a more inclusive and equitable society.

Jean P. Hall, PhD, is the Director of the Institute for Health and Disability Policy Studies and the Research and Training Center on Independent Living at the University of Kansas. Her research examines the interaction of disability, health, employment, and community participation. In addition to leading the project administering the National Survey on Health and Disability, she currently directs the Research and Training Center on Promoting Interventions for Community Living and a project to evaluate employment supports in Kansas. A priority of her research is to give voice to people with disabilities and their experiences with accessing health care and living in their communities.

Zachary P. Hart, PhD, is a Professor of Communication at Northern Kentucky University in the United States. His research interests include sensemaking among parents of children with disabilities and new employee socialization among adults with disabilities. His work has been published in regional, national and international journals in the communication and disability studies disciplines. He teaches courses in communication studies, health communication and public relations. He also is the parent of an amazing young man who happens to have Down syndrome as well as Crohn's disease.

Nicole Ineese-Nash, PhD, is an Assistant Professor in the School of Early Childhood Studies, Toronto Metropolitan University, Canada. Nicole's research and community advocacy centers on Indigenous childhood and youth, disability, education, and mental health systems, underpinned by a commitment to Indigenous community development, mental health and wellbeing, and land-based practices. She has authored numerous articles and book chapters, making significant contributions to the fields of Indigenous studies, childhood studies, disability studies, and education from an Indigenous perspective. A member of Constance Lake First Nation, Nicole (she/her) resides and works in Tkaronto. Her active involvement in community initiatives, such as Finding Our Power Together (a national Indigenous charity) showcases her dedication to addressing systemic challenges faced by Indigenous communities and promoting inclusive education and mental health practices.

Molly Joyce is a PhD candidate in Composition and Computer Technologies at the University of Virginia. She has been deemed one of the “most versatile, prolific and intriguing composers working under the vast new-music dome” by The Washington Post. Her work is concerned with disability as a creative source, and her most recent album, Perspective, featuring voices and viewpoints of disabled interviewees, was praised by Pitchfork as “a powerful work of love and empathy that underscores the poison of ableism in American culture.” Her publications include “Seeking Performance Sustainability within Disability” in Peripeti Journal, “Fostering Disability Artistry in Higher Education” in Disabled Faculty & Staff: Intersecting Identities in Higher Education (AHEAD), and “Virtuosity of the Self” in Contemporary Notions of Musical Virtuosities (Routledge). For more information: www.mollyjoyce.com.

Noelle K. Kurth is a research associate at the University of Kansas Institute for Health and Disability Policy Studies (KU-IHDPS) whose work centers on health disparities experienced by people with disabilities, including those from multiply marginalized groups. Since 2018, she has led the development and administration of the National Survey on Health and Disability (NSHD) and leads a multidisciplinary team of researchers from across the United States who are conducting analyses using the NSHD.

Eun-Jeong Lee, PhD, is a Full Professor in the Department of Psychology at Illinois Institute of Technology. Dr Lee has had over 20 years of experience in the area of disability and rehabilitation as a therapist/counselor, researcher, and educator. Her publications include over 50 peer-reviewed articles and book chapters which focus on the psychosocial/multicultural issues among people with disability and their caregivers, vocational aspects of disability, and various factors contributing to successful outcomes. As PI and co-PI, Dr Lee had led multiple research projects funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), the National Institute of Health (NIH), the Department of Defense (DOD), and Rehabilitation Services Administration (RSA).

Jeniffer Dongha Lee, is a social worker and a graduate student in Analytics at University of Chicago.

Justin T. Maietta, PhD, completed his doctorate degree in sociology at the University of Maryland in Fall 2023. His research focuses on understanding social experiences of chronic illness and disability through the lens of sociological social psychology. His overall research interests include the self, identity, health and illness, disability, family and intimate relationship dynamics, and reflexive processes involved in qualitative research.

Alan Santinele Martino, PhD, is an Assistant Professor in the Community Rehabilitation and Disability Studies program in the Department of Community Health Sciences at the University of Calgary. His main research interests are in critical disability studies, gender, and sexualities; feminist and critical disability studies theories; qualitative and community-based research (particularly participatory and inclusive research methodologies). His work has been published in multiple journals, including, for example, Disability Studies Quarterly, Sexuality and Disability, and Culture, Health and Sexuality, as well as edited volumes focused on disability and/or sexualities studies. He has guest-edited three special issues, and he is currently working on two edited books. He is the lead of the Disability and Sexuality Lab at the University of Calgary.

Stavros K. Parlalis, PhD, is an Associate Professor in Social Work at Frederick University (Cyprus) and the Coordinator of the Social Work Program. He has >15 years of professional experience in social work, working with people with disabilities and other groups of vulnerable people, environmental and entrepreneurial projects with social impact, enabling the empowerment of local communities.

Lisa Pfahl, PhD, is a Professor for Disability Studies and Inclusive Education at the Faculty for Education, Universität Innsbruck, since 2015. Her research is on education, work, and inequality, focusing on disabled subjects and subjectivation. She is cofounder and editor of the “Zeitschrift für Disability Studies/ZDS Journal of Disability Studies” (https://zds-online.org/) and head of the project “bidok,” a barrier-free, online open access library (https://bidok.library.uibk.ac.at/).

Sang Qin, PhD, is an Assistant Professor of Rehabilitation Counseling and Special Education at the University of Wisconsin Madison. Her work investigates the influence of attitudinal barriers experienced by individuals with disabilities, with a particular focus on those with psychiatric conditions. Alongside this, Sang is dedicated to advancing health equity within Asian communities. Specifically, she continues to explore the family-centered decision-making models, as detailed in the current chapter, across a variety of Asian populations and scenarios.

Darcy L. Sullivan is a PhD candidate at the University of Kansas Department of Sociology and a graduate research assistant at the University of Kansas Institute for Health and Disability Policy Studies. Her research applies a critical feminist lens to understand the social forces that influence health and health inequalities. Darcy's work examines women's access to reproductive health care and family formation, and health policy issues and social determinates of health experienced by people with disabilities.

Boris Traue, PhD, is a Professor of Social Work at the University of Luxembourg. His interests in the history of the self and human development are informed by phenomenological as well as poststructuralist social thought. His latest book publications include Sasa Bosancic, Folke Brodersen, Lisa Pfahl, Tina Spies, Lena Schürmann and Boris Traue (2022) “Following the Subject.” Wiesbaden:SpringerVS https://link.springer.com/book/10.1007/978-3-658-31497-2 and Sasa Bosancic, Folke Brodersen, Lisa Pfahl, Tina Spies, Lena Schürmann and Boris Traue (2022) Positioning the Subject. Wiesbaden SpringerVS.

Judith Tröndle, PhD, is postdoctoral researcher at the Institute for Social Research and Interventions (ISI) at the Université du Luxembourg, since 2020. Her work focusses on processes of subjectivation and social inequalities. She develops sociological perspectives on couples, gender, and disability, as well as on musical practices and associated orders of membership, affectivity, and solidarity. In her dissertation at the Humboldt-Universität zu Berlin, she studied processes of othering and subjectivation in regard to couples, parenting a child with disabilities: Tröndle, J. (2022) Elternschaft als Othering. Zur Subjektivation von Paaren als Eltern eines Kindes mit Behinderung. Germany, Wiesbaden: Springer VS.

Kathryn Underwood, PhD, is a Professor in the School of Early Childhood Studies, Toronto Metropolitan University, Canada. Dr Underwood investigates society's response and construction of childhood in social institutions using critical disability theory. Her interests include human rights, education practice, disability rights, and inclusive education, with a focus on how disability constructions in education and early childhood contexts organize children, particularly those with intersectional identities. Dr Underwood has conducted studies focusing on parent viewpoints and family engagement with institutions. She has authored multiple books, articles, and reports on inclusive education, children's rights, and policy development. Kathryn Underwood (she/her) is a dedicated educator and researcher committed to promoting equity and inclusion for children with disabilities in educational settings, contributing to shaping policies and practices that support diverse children and families in Canada and beyond.

Kevin Hans Waitkuweit is a graduate student in Disability Studies at the Department of Disability and Human Development in the University of Illinois at Chicago. Waitkuweit is also a board member of the National Coalition of Independent Scholars. His research can be found in the following publications and research outlets: Development in Practice, Contexts, the Journal of Language and Politics, and United States Agency for International Development’s (USAID) Development Experience Clearinghouse.

Acknowledgments

We would like to thank each of the authors that contributed to this volume, as well as the many colleagues who donated their time and expertise as anonymous peer reviewers of all of the chapters included. We also thank the study participants whose experiences shaped the content presented in this volume. Finally, we are grateful to Barbara M. Altman, Sharon N. Barnartt, Allison C. Carey, and Sara E. Green for leading the charge on this book series and allowing us to be part of its continued legacy.