8 Books About Facial Disfigurement, Written By People With Disfigurement

by Ariel Henley

There is immense power in sharing stories and in relating to others with experiences similar to your own. There is comfort in a book’s power to remove you from the isolation that can often accompany a marginalized identity. Everyone deserves to feel like they belong. Reading stories that accurately portray individuals from underrepresented populations helps boost the voices of the marginalized. And given our country's current social and political climate, this is of vital importance.

For this reason, websites like LGBTQ Reads, GAY YA, and organizations like Special Books by Special Kids and We Need Diverse Books are actively working to diversify stories and encourage dialogue between people from all walks of life. Corinne Duyvis, the creator of #OwnVoices —  a movement calling for others to encourage, support, and recommend books where both the author, and the author’s protagonist, are from the same marginalized group, said in an interview last year, “There is a danger in promoting certain books more than others, though, which many marginalized authors have experienced. A book about a Japanese character by a white author may get more attention and marketing push than a book about a Japanese character by a Japanese author. That’s a real problem, and something we need to address.”

Physical disfigurement and facial differences are having a moment in mainstream media right now. With the role of Dr. Poison in the recent box office hit Wonder Woman, as well as the upcoming movie Wonder (based on the bestselling book by R.J. Palacio), a story about a young boy with a craniofacial disorder as he navigates life with a facial disfigurement, issues surrounding the Craniofacial community and the treatment of individuals with facial differences have started getting the attention they deserve.

While it's great that Wonder has helped highlight certain issues like bullying, the author of the story does not have any personal experience with disfigurement or craniofacial disorders. In fact, the author was inspired to write Wonder after her own child reacted negatively to seeing a young girl with a craniofacial condition at an ice cream parlor. "When my younger son looked up and saw her, he reacted exactly the way you might think a three-year-old would react when seeing something that scared him: He started to cry—pretty loudly, too," Palacio says on her website. Wonder has gone on to become a voice for those of us with craniofacial conditions, but as someone who was born with Crouzon syndrome - a rare craniofacial condition where the bones in the head don't grow - I believe it's important to celebrate and highlight work by authors who've actually lived these experiences. The issues that affect us should not be represented by people outside of our community.

Here are eight real stories about disfigurement written by people actually living with disfigurement:

'Ugly: My Memoir' by Robert Hoge

When 45-year-old Robert Hoge was born in Brisbane, Australia, he had a tumor in the center of his forehead, a disfigured face, and mangled limbs. After his birth, Hoge’s parents refused to look at him, and as they struggled to accept the fact that their child was born with severe physical differences, even contemplated not bringing their newborn baby home. While the author had to overcome the hardships associated with numerous surgeries and physical disfigurement, his parents fought to give him a normal life. From a normal childhood of school events and team sports to having children of his own, Ugly is a compelling story that takes readers through the physical and emotional aspects of recovery, while exploring the power of love and support in overcoming trauma.

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'Autobiography of a Face' by Lucy Grealy

After childhood cancer left her jaw disfigured, Lucy Grealy underwent over 30 surgeries to try and reconstruct her appearance. Grealy’s story explored the pain and rejection she experienced, as well as her desire to be loved, accepted, and beautiful. Exploring the physical and emotional hurdles she faced, both at the hands of her cancer and at the superficial societal constructs of beauty she was never quite able to reach, Grealy’s story is moving, tragic, and powerful. It highlights the problematic and damaging role of female beauty in our society.

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'Running from the Mirror' by Howard Shulman

Only three days after Howard Shulman’s birth, he contracted an infection that left a hole in his face where his nose, lips, and lower eyelids had been. After his parents abandoned him at a hospital, Shulman was cared for by the state of New Jersey, where a state-employed plastic surgeon performed surgeries to reconstruct his face. Raw, honest, emotional, and vulnerable, Running from the Mirror explores Shulman’s complicated emotional response to trauma. With Shulman often portraying himself as the story’s anti-hero, this book is the opposite of inspiration porn.

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'Full of Heart' by J.R. Martinez

A month into 19-year-old Private J.R. Martinez’s deployment in Iraq, he was was in a serious humvee accident. As a result, Martinez suffered severe burns to over a third of his body — his face included. After the accident, Martinez, who grew up in the Southern United States, returned to the U.S., where he spent two years recovering at a medical center in Texas. Growing up, Martinez had been known for his looks, wit, and athletic talent. Struggling to accept his new reality and facial difference, he found passion in connecting with others and sharing his story. From the accident that threatened his life to winning season 13 of Dancing with the Stars, Full of Heart is an intimate, detailed account filled with strength, hope, and courage. Martinez shows reader the strength it takes to put your life back together after tragedy.

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'A Crooked Smile' by Terri Tate

After being diagnosed with oral cancer and told there was only a 2% chance she’d survive, Terri Tate found healing in her own blend of faith and writing. Rooted in her experiences with cancer, disfiguring surgery, and recovery, A Crooked Smile uses honesty and humor to offer up hope.

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'The Bear’s Embrace: A True Story of Survival' by Patricia Van Tighem

Patricia Van Tighem and her husband were attacked by a grizzly bear In 1983, while on vacation in the Canadian Rockies. Though the couple survived the attack, they underwent a number of reconstructive surgeries.

Not only does Van Tighem’s beautiful writing detail the physical trauma she faced during and after the attack, but readers are taken inside Van Tighem’s physical and emotional journey to recovery, as she navigates the psychological impact of readjusting to life after trauma. The brutality wasn’t limited to the attack, however. Van Tighem echoes the violent nature of the bear, by discussing society’s almost animalistic judgment surrounding her appearance after the attack. A wife, a mother, and survivor of this vicious attack, The Bear’s Embrace is a haunting testament to what it means to heal - physically, spiritually, and emotionally.

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'Disfigured: A Saudi Woman’s Story of Triumph over Violence' by Rania al-Baz

Tania al-Baz was the first female Saudi news anchor - a position she held for six years, until her husband’s violence put her in a coma and disfigured the face she had become known for. After thirteen surgeries to help reconstruct her face, al-Baz began speaking out against domestic violence and those in the Saudi culture that tolerated it. The author’s story does not criticize her country or religion, but condemns the violence too many have normalized. From her childhood in Saudi Arabia, career as a journalist on television, marriage, and motherhood, Disfigured: A Saudi Woman’s Story of Triumph Over Violence is a tale of strength, courage, and female empowerment.

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'Marked for Life: A Memoir' by Joie Davidow

Born with a port-wine stain - a purple birthmark that covers a large portion of her face, Joie Davidow faced bullying growing up. When she learned how to use makeup, she began hiding her facial difference and a part of herself. But every time she washed her makeup off, Davidow was reminded of the mark that haunted her for so many years. With discussion around love, success, and beauty, Marked for Life, is a coming of age story of acceptance.

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