Below you will find stories and poetry written by people with facial differences and Moebius syndrome.
Our Q3 2023 book club selection is Being Heumann: An Unrepentant Memoir of a Disability Rights Activist
February 2023 | Moderated by Lisa Smant
November 2022 | Discussion with author Ariel Henley, moderated by Kathryn Kraus McClure
By Susannah Fox
MIT Press, 2024
Members of the Moebius syndrome community provided input to the forthcoming book, 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. The book is available for pre-order through major retailers and will be published in Feb. 2024.
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).
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.
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.
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 Haben Girma
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.
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 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.
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.
By Laura Greenwald
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
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.
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 email@example.com.