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Below you will find stories and poetry written by people with facial differences and Moebius syndrome.
By Tina Michael
Published May 10, 2026
My Mama Would Have Fought You is a deeply personal memoir about growing up disabled before having the language to understand it, and what it means to spend a lifetime trying to be chosen in a world that often looks away.
By Effy Redman
Vine Leaves Press, 2024
Born with Moebius syndrome, Redman’s grit and eye for beauty help her survive childhood bullying and adolescent doldrums. Her physical transformation at age thirteen via plastic surgery eviscerates her concept of image, just in time for her and her family to immigrate from hardscrabble Manchester, England to America’s disorientingly scenic upstate New York. Not until diagnosis in young adulthood with bipolar disorder does Redman come out of the closet as a lesbian, finally claiming her most inherent identity. Learn more about Effy: https://www.effyredman.com/
Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care
By Susannah Fox
MIT Press, 2024
Members of the Moebius syndrome community provided input to Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care by Susannah Fox. The book explores how people diagnosed with rare conditions navigate the medical landscape by becoming seekers, networkers, solvers, and champions. Each chapter includes tips and tricks learned from years in the medical system. The author covers a variety of conditions from ASL to Moebius syndrome to chronic disease management.
By Jono Lancaster
Ebury Publishing, 2023
Jono Lancaster was born with Treacher Collins Syndrome, a condition that affects facial appearance. At only two weeks old, he found himself in foster care. Jono shares the highs and lows of his journey and how he turned his differences into his greatest strengths. Lancaster’s memoir comes with a powerful message: you are strong enough to become your own hero (cape optional).
The Country of the Blind: A Memoir At the End of Sight
By Andrew Leland
Penguin Press, 2023
A narrative of the author’s transition from sighted to blindness and adjusting to the change.
Year of the Tiger: An Activist’s Life
By Alice Wong
Vintage, 2022
The book describes the author’s life as an Asian American disability activist.
By Sara Novic
Random House, 2022
Written by a deaf author, True Biz is the fictional story of a girl with a cochlear implant who leaves a standard public school and joins a school for the deaf. The story weaves together a history of American Sign Language (ASL), mini-ASL lessons, and insight into deaf culture.
Disability Pride: Dispatches from A Post-ADA World
By Ben Mattlin
Beacon Press, 2022
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.
A Face for Picasso: Coming of Age with Crouzon Syndrome
By Ariel Henley
Farrar, Straus and Giroux (BYR), 2021
The author describes growing up with Crouzon syndrome and the emotional and physical challenges that go along with it. Winner of numerous book awards, including the Schneider Family Book Award.
Being Heumann: An Unrepentant Memoir of a Disability Rights Activist
By Judith Heumann and Kristen Joiner
Beacon Press, 2021
Disability rights activist Judith Heumann describes the experiences of her childhood and early adulthood that shaped her desire to advocate on behalf of all individuals with disabilities. Heumann was a key player in the passage of legislation that led to the creation of the Americans with Disabilities Act (ADA).
By Sarah Ruhl
S&S/ Marysue Rucci Books, 2021
The author describes her challenges with a case of Bell’s palsy that doesn’t heal. Ruhl is a recipient of the MacArthur “genius” Fellowship, and is a playwright, essayist, and poet.
By Riva Lehrer
One World, 2020
Artist and author Riva Lehrer describes her childhood with spina bifida and her overly cautious mother.
Haben: The Deafblind Woman Who Conquered Harvard Law
By Haben Girma
Twelve, 2020
Haben Girma describes her life, from her childhood in Eritrea as a refugee to landing in the White House, where she would become President Obama’s Champion of Change.
FACE IT: Facial Disfigurement and My Fight for Face Equality
By James Partridge
Pebble Press, 2020
James Partridge was 18 when he was severely facially burned. FACE IT tells how he found a way to live happily with his distinctive face in our face-perfect society, turned the lessons he learned into practical empowerment for others with facial disfigurements, and launched the global campaign for “face equality” for everyone, whatever their face looks like. FACE IT looks prejudice in the eye and refuses to blink.
By Lucy Grealy
Harper Perennial, 2016
At age nine, Lucy Grealy was diagnosed with a potentially terminal cancer. When she returned to school with a third of her jaw removed, she faced the cruel taunts of classmates. It took her twenty years of living with a distorted self-image and more than thirty years of reconstructive procedures before she could come to terms with her appearance. In this lyrical and strikingly candid memoir, Grealy tells her story of great suffering and remarkable strength without sentimentality and with considerable wit.
Also see the companion book, Truth and Beauty, by Ann Patchett.
Undesirable Elements: Real People, Real Lives, Real Theatre
By Ping Chong
Theatre Communications Group, 2013
This book documents the “undesirable elements” theatre performances that have taken place in the U.S. and internationally. It includes the scripts of some of the performers, and Moebius syndrome is represented.
By Sage Sohier
Columbia College Chicago Press, 2013
This is a photo essay book featuring patients from the Facial Nerve Center at the Massachusetts Eye and Ear Infirmary in Boston. The photos are simple and beautiful.
The Invisible Smile: Living Without Facial Expression
By Jonathan Cole with Henrietta J. Spaulding
Oxford University Press, 2009
This is an academic text that discusses the life experiences of several adults and children with Moebius syndrome. To find this book, check Amazon, Oxford University Press, or your local library system.
Eye of the Beholder: True Stories of People with Facial Differences
By Laura Greenwald
Kaplan, 2009
This book features true stories of people with facial differences and their quest for acceptance. It includes a chapter on Moebius syndrome.
By David Roche
Perigee, 2008
David Roche’s book takes the reader on a journey of his life experiences, with stories and anecdotes that range from spiritual to raucous. David has a craniofacial condition, venous malformation, and has been a presenter at several Moebius Syndrome Foundation conferences.
Truth & Beauty: A Friendship
By Ann Patchett
Harper Perennial, 2005
Ann Patchett and the late Lucy Grealy met in college in 1981, and, after enrolling in the Iowa Writers’ Workshop, began a friendship that would be as defining to both of their lives as their work. In Grealy’s critically acclaimed memoir, Autobiography of a Face, she wrote about losing part of her jaw to childhood cancer, years of chemotherapy and radiation, and endless reconstructive surgeries. In Truth & Beauty, the story isn’t Lucy’s life or Ann’s life, but the parts of their lives they shared.
Changing Faces: The Challenge of Facial Disfigurement
By James Partridge
Phoenix Society, 1990
Written from personal experience, this book is intended for people with facial differences and their families. The author’s premise is not that those with facial differences should “learn just to cope,” but that they should play an active and perfectly normal part in society.
Como é ter Sìndrome de Moebius?
By Amanda Nascimento
pcn Comunicacăo, 2015
Written in Portuguese, this book explains Moebius syndrome. To order, contact: amandanovonascimento@hotmail.com.
Moebius Syndrome — Betroffene und Fachleute informieren
BoD – Books on Demand, 2014
This book on Moebius syndrome is in German and is available from the German Amazon store. For more information, contact Falco Schleier at falco.schleier@googlemail.com.
Members of the Moebius community are welcome to submit their poetry and personal essays.
Poetry
By Yann Chevrot
By Yann Chevrot
Disability Scoop is the largest news organization in the U.S. devoted to developmental disabilities.
Find more books by checking out the book list from Face Equality International.
