Books

Author Rebecca Alexander tells her extraordinary story, by turns harrowing, funny, and inspiring. She meditates on what she’s lost—from the sound of a whisper to seeing a sky full of stars, and what she’s found in return—an exquisite sense of intimacy with those she is closest to, a love of silence, a profound gratitude for everything she still has, and a joy in simple pleasures that most of us forget to notice.

A collection of personal, humorous, and heartfelt stories by René Pellerin, a DeafBlind individual who currently lives in Vermont, about navigating life when “cultures” such as Deaf, Blind, Hearing, and everything in between interact, clash, and sometimes collide, anc connections begin. René uses real-life experiences to show what it's like growing up Deaf, later becoming DeafBlind due to retinitis pigmentosa (RP), and learning to communicate using tactile ASL. Through these stories, he helps others understand the challenges, misunderstandings, and funny moments that come from living in multiple worlds. Learn about René's identity and heritage growing up in a large French Canadian family, moving to America, sharing his diagnosis as Deaf at age five, embracing his Deaf identity early in life, learning he had RP, and transitioning from visual ASL to tactile ASL. As René journeys through his life, he connects community and communication and shows how Deaf, hearing, and DeafBlind cultures differ and collide. Using humor, he walks us through stories about school, family life, college life at Gallaudet University, marriage, traveling, mishaps, and everyday interactions.

René wrote this book to educate the public about DeafBlindness, share what daily life is truly like, use humor to connect people across cultures, and inspire acceptance, awareness, and understanding.

In Silence and Light, Lanya Lynn Elsa, PhD (formerly Lanya McKittrick), shares an unforgettable memoir of motherhood, advocacy, and insight born from faith, grief, and resilience. When her sons were diagnosed with Usher syndrome—the leading genetic cause of deafblindness—Lanya found herself thrust into a world filled with uncertainty, heartbreak, and unwavering love.

“You are extraordinary!” Jordyn’s father says.
Extraordinary Jordyn and her Bionic Ears is an encouraging children’s story about a young girl passionate about space and self-advocacy. Join Jordyn as she overcomes judgment for her cochlear implant and hearing aid, uplifting children embracing their extraordinary differences. This book is great for ages 3-8 years old.
Written by Jasmine Simmons, Au.D., CCC-A, Clinical Audiologist.

A front-row seat into how Kevin Frost's life changed when he heard his diagnosis and what he did to get through the depression that engulfed him to become an accomplished sportsman, a dad, a life partner, son, brother, teammate, and activist.

Author Tiffany Kohnen covers 15 different topics and strategies meant to teach you about hearing loss. Have you ever seen a person with hearing loss struggling to communicate? And you wanted to help... but you were afraid of offending them? Get to know your deaf neighbor, your hard of hearing co-worker, your friend or family with hearing loss by taking the time to learn how to communicate effectively with them. This short book covers 15 different topics with strategies for interacting.

Have you ever wanted to be a better friend, more supportive family member, or effective guide when walking with someone who is blind or has "low vision"? This book is a guide to these topics and more:

Information about different kinds of vision loss.
How to approach a blind person
Respectful language to use when talking to anyone who is blind.
What Locator Words are and how to use them.
When you should and should not pet service animals.
How and why blind people use a white cane.
How to offer assistance to someone who is blind or has low vision
Written by Author Tiffany Kohnen

"I was born deaf with Type 1 Usher Syndrome, but I didn't know it. This is how I gradually discovered that I did not see like everyone else, but without knowing that my eyes had a problem. I have always liked to travel. This book is an account of my travels; I tell you all the little tips you need to use to cope with your disability, with the help of others as well."

Walk in My Shoes: An Anthology on Usher Syndrome is the first and only published book written by 28 writers who are touched by Usher syndrome. It is a web of biographies spun into a beautifully crafted book of hope.

Mani Iyer is an author with Usher syndrome. This book is a compilation of his poetry.

My Maggie is a rare and real love story. Rich and Maggie King were two people who never gave up on each other a testament to a love few have the will to attain. She was his childhood sweetheart and wife of thirty-two years. Diagnosed with hearing loss at the age of four, she wore cumbersome hearing aids and felt the humiliation of being different. Slowly, an insidious disease (Usher syndrome) robbed her of vision. She fought three different cancers, changed careers in the middle of her life, and fought to realize her dreams. Yet, underneath these great challenges, two people shared an incredible love. It was cemented by adversity and reached a near-perfect spiritual connection.

The Kitty Fischer story, written by Cathryn Carroll and Catherine "Kitty" Hoffpauir Fischer. The author describes her life and her cultural odyssey as a Cajun woman from Louisiana with Usher syndrome. Fischer is a former librarian at the Model Secondary School for the Deaf.