Moebius Syndrome Foundation

Books & Resources for Adults

Below you will find stories and poetry written by people with facial differences and Moebius syndrome.

Join Our Book Club!

The Moebius Syndrome Foundation hosts a quarterly book club for adults. Email events@moebiussyndrome.org for more information or register through our events calendar.

Moebius Syndrome Foundation Book Club

Q1 2023

The Facemaker

February 2023 | Moderated by Lisa Smant

Q4 2022

A Face for Picasso

November 2022 | Discussion with author Ariel Henley, moderated by Kathryn Kraus McClure

Suggested Reading for Adults

Saving Face cover

Saving Face: A Memoir

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 Cover

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. 

Cover of Not All Heroes Wear Capes by Jono Lancaster

Not All Heroes Wear Capes

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).

Year of the Tiger book cover. A bright yellow cover with a bright red tiger, in an Asian drawn style, graces the cover with the title and author's name. Red Asian print flowers also appear.

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. 

 

True Biz Book Cover. Multicolored large letters make the title True Biz next to a ASL signing hand

True Biz

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. 

 

A Face for Picasso Book Cover

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.

 

Smile The Story of Face book cover. Neutral background with blue title letters. A pencil thin face is drawn with a leaf obscuring half of it.

Smile: The Story of a Face 

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. 

 

Golem Girl book cover. A woman with an obscured face stands in a red sweater with her arms crossed

Golem Girl: A Memoir

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.

 

Undesirable Elements Cover Image

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.

About Face

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. 

Watch a video of the author discussing her book

The Church of 80% Sincerity By David Roche Book Cover

The Church of 80% Sincerity

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.

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.

Poetry And Essays

Members of the Moebius community are welcome to submit their poetry and personal essays.

Poetry

A man with Moebius sits on a yellow chair

Come Back Little Girl

By Yann Chevrot

A Clear Fountain

By Yann Chevrot

We Smile With Our Hearts

Written by Emily Pello

Submitted by Yann Chevrot

 

Poetry

Katrina Donovan stands with purple oversize clown glasses, a purple shirt, and a purple tutu. Her poem is written on the image next to her.

If you look inside…

by Katrina Donovan

Essay

A cartoon image of Lisa Smant looking at the Mona Lisa

Mona Lisa

by Lisa Smant

Disability News

Disability Scoop is the largest news organization in the U.S. devoted to developmental disabilities. 

Further Reading

Find more books by checking out the book list from Face Equality International.