Disfigurement: Understanding Visible Difference is a collection of essays which brings together an all-star cast of researchers, clinicians, advocates and activists around the world, many of whom have lived experience with disfigurement. Seeking to reduce stigma around disfigurement, they explore the experience of looking different including interventions to help with social integration, social media issues, and prejudice towards physical difference. The collection serves as a call for activism and offers a direction for future research.
This book responds to the three themes prevalent in the literature on disfigurement: (1) the psychosocial aspects of body image and identity, (2) interventions, and (3) representations of disfigurement. In section one, the book explores the psychosocial aspects of body image and identity among people with disfigurement. Section two looks at interventions, including those involving social media. And in response to this misrepresentation, section three offers the voices of folks who are helping to change public opinions through media and activism.
This book is invaluable reading for all clinicians, researchers, activists, people with disfigurement and those who care about them. Disfigurement: Understanding Visible Difference is a crucial resource for students of disability studies, social work, and health psychology.
Disfigurement: Understanding Visible Difference is a collection of essays which brings together an all-star cast of researchers, clinicians, advocates and activists around the world, many of whom have lived experience with disfigurement.
Arvustused
"The new gold standard for understanding the experience of disfigurement, this book is written by an all-star team of experts, most of whom live with disfigurement themselves. Contributions from perspectives of academics, clinicians, advocates, activists, and artists build a holistic understanding of disfigurement. Grounded in voices often excluded from traditional scholarship, this book is approachable for anyone interested in face equality.
- Kathleen Bogart, PhD, Professor of Psychology, Oregon State University.
"Disfigurement: Understanding Visible Difference, edited by Deguire & Jaffe, weaves scientific research with moving personal stories from people who harbor physical anomalies. The book offers essential reading for anyone who cares about how appearance deeply affects our lives, social interactions, and sense of wellbeing."
- Anjan Chatterjee, M.D., Director, Penn Center for Neuroaesthetics.
"We know that living with a visible difference can come with a significant psychosocial burden for many. From their different yet complementary perspectives, Drs. Deguire and Jaffe have brought together international scholars and those with lived experience to teach us more about the challenges and successes of those living with disfigurement. There is so much the reader will take away from this book."
- David B. Sarwer, Ph.D., Professor of Social and Behavioral Sciences, College of Public Health, Temple University.
"Disfigurement: Understanding Visible Difference is a vital collection that amplifies the voices of those living with visible differences, tackling issues like embodied ableism, media representation, and the impact of social perceptions on identity. With contributions from experts and individuals with lived experience, this book explores both the struggles and the resilience of those who navigate a world that often fails to see their full humanity. Whether youre looking for personal insight, advocacy tools, or support strategies, this book is an essential read for anyone committed to fostering true inclusion."
- Chelsey Peat, Facial/Visible Differences Advocate, Author.
Contents
Dedication and Acknowledgements
Contributor Bios
Introduction in Two Parts
Lise Deguire and Miriam Jaffe
Section 1: The Psychosocial Aspects of Body Image and Identity
Chapter 1
Confronting Embodied Ableism: Learning from Synkinesis
Faye Linda Wachs
Chapter 2
Acid Violence and Disfigurement: Lived Experiences of Women Survivors
Beenish Ambereen and Farhan Navid Yousaf
Chapter 3
Those experiences while good also made me feel uncomfortable and broken: A
Males Perspective of Living with Facial Eye Disfigurement
Zali ODea and Jane Southcott
Interlude
Living Louder: Uncovering and Unlearning the Lessons of Rejection Stories
Jasmine Jaz Gray
Pretty Disability: A Collection of Essays from a Black Girl who has
Contemplated her Beauty and Worth
Rasheera D. Dopson
Section 2: Interventions
Chapter 4
Psychosocial Interventions to Support People Affected by Visible Differences
Diana Harcourt, Maia Thornton, Pippa Tollow, Fabio Zucchelli and Alex Clarke
Chapter 5
Visible Difference and Social Media: Harnessing a Unique Tool to Increase
Support and Reduce Stigma
Ella Guest, Abbi Mathews, and Amy Slater
Chapter 6
FaceIT@home: An Online Support Tool for Adults with Visible Differences
Alyson Norman
Interlude
Finding My Voice
Dina Zuckerberg
The Swan Fallacy
Sora Kasuga
Section 3: Representations of Disfigurement
Chapter 7
Challenging Down Syndrome Prejudices in Todays Media Landscape
Charlene Pell
Chapter 8
Facing up to *IT* is worth it; James Partridge Revisited
J. Michael Murphy
Chapter 9
The Stories that Need to be Told
Phyllida Swift
Lise Deguire, Phd, is a clinical psychologist, author, and burn survivor. After being severely burned as a four-year-old, she spent much of her childhood in the hospital, undergoing countless surgical procedures. Dr. Deguire is the author of the multiple award-winning book, Flashback Girl: Lessons on Resilience from a Burn Survivor. Dr. Deguire attended Tufts University, graduating summa cum laude, Phi Beta Kappa. She earned her doctorate in clinical psychology from Widener University and is in solo practice in New Jersey. Dr. Deguire has appeared on NPR, NBC, ABC, FOX, and Sirius XM. She is a TEDx speaker, a national keynote speaker and has presented for The American Psychological Association, the World Burn Congress, The Security and Exchange Commission, and The American Burn Association. She writes for Psychology Today, and has been featured in Huffington Post, Thrive Global and Tiny Buddha. Dr. Deguire blogs regularly about psychological resilience.
Miriam Jaffe, PhD (English), LSW, is Associate Teaching Professor in the Writing Program at Rutgers University and the lead editor of five collections on social justice issues (Routledge, 20162022). Her publications on narrative activism from narrative medicine in literature to mental health and racial justice awareness in the social sciences span 15 years. Shes worked as associate editor for the journal Writing and Pedagogy. She recently won Rutgers Universitys Beloved Community award. Miriam is also a psychotherapist specializing in trauma using EMDR and play.
