Disfigurement

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, 2016–2022). Her publications on narrative activism – from narrative medicine in literature to mental health and racial justice awareness in the social sciences – span 15 years. She’s worked as associate editor for the journal Writing and Pedagogy. She recently won Rutgers University’s Beloved Community award. Miriam is also a psychotherapist specializing in trauma using EMDR and play.

• ContentsDedication and AcknowledgementsContributor BiosIntroduction in Two PartsLise Deguire and Miriam JaffeSection 1: The Psychosocial Aspects of Body Image and IdentityChapter 1Confronting Embodied Ableism: Learning from SynkinesisFaye Linda WachsChapter 2Acid Violence and Disfigurement: Lived Experiences of Women SurvivorsBeenish Ambereen and Farhan Navid YousafChapter 3“Those experiences while good also made me feel uncomfortable and broken”: A Male’s Perspective of Living with Facial Eye DisfigurementZali O’Dea and Jane SouthcottInterludeLiving Louder: Uncovering and Unlearning the Lessons of Rejection StoriesJasmine “Jaz” GrayPretty Disability: A Collection of Essays from a Black Girl who has Contemplated her Beauty and WorthRasheera D. DopsonSection 2: InterventionsChapter 4Psychosocial Interventions to Support People Affected by Visible DifferencesDiana Harcourt, Maia Thornton, Pippa Tollow, Fabio Zucchelli and Alex ClarkeChapter 5Visible Difference and Social Media: Harnessing a Unique Tool to Increase Support and Reduce StigmaElla Guest, Abbi Mathews, and Amy SlaterChapter 6FaceIT@home: An Online Support Tool for Adults with Visible DifferencesAlyson NormanInterludeFinding My VoiceDina ZuckerbergThe Swan FallacySora KasugaSection 3: Representations of DisfigurementChapter 7Challenging Down Syndrome Prejudices in Today’s Media LandscapeCharlene PellChapter 8Facing up to *IT* is worth it; James Partridge RevisitedJ. Michael MurphyChapter 9The Stories that Need to be ToldPhyllida Swift

"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 you’re 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.