Additional Resources

by National Consortium on Deaf-Blindness on Jul 1, 2014
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103 HAPTIC SIGNALS - A REFERENCE BOOK-- Danish Association of the Deafblind: 2012, 123 pages. This book is produced by The Danish Association of the Deafblind in collaboration with Centre for Sign Language - The Interpreter Training Program and The Information Centre for Acquired Deafblindness. The illustrations show Anette Rosenqvist making haptic (touch) signals on the back of Dorte Eriksen who is deafblind. Anette Rosenqvist and Dorte Eriksen are some of the Danish pioneers in the development of haptic communication.  This document is available on the web at:


AND THE JOURNEY BEGINS, Axelrod, Cyril. -- Douglas McLean: 2005, 228. This is the autobiography of a man who was born deaf and later lost his vision due to retinitis pigmentosa. He was raised Jewish, but became a Catholic priest. This story chronicles his life and work.


BRAVO! MISS BROWN: A World Without Sight and Sound, Mactavish, Joan. -- Cavu, Inc. 2000, 392. This is a non-fiction book about a deaf-blind Canadian woman, Mae Brown. She was the first deaf-blind person to graduate from the University of Toronto. The book tells of her journey and accomplishments.


CONSUMERS SPEAK OUT, Carr, Theresa S. -- Paul H. Brookes Publishing Co. 1995, 71-85. This book chapter summarizes responses obtained through interviews with seven individuals who received services from the Helen Keller National Center in the spring of 1993. The goal of this book chapter is to introduce novice service providers to the population of individuals who are deaf-blind and remind more experienced service providers of the diverse experiences, needs, and dreams of this low-incidence population. The results of these interviews reinforce four particular themes: 1) the importance of employment and community living; 2) the importance of effective communication; 3) the need for friendships and other relationships; and 4) the importance of engaging in satisfying leisure and recreation activities.

Supporting Young Adults Who Are Deaf-Blind in Their Communities. Jane M. Everson (Ed.)


DEAF-BLIND REALITY: Living the Life, Stoffel, Scott M.(Ed.) Washington, DC: Gallaudet University Press, 2012, 275. From the book jacket: "explores what life is really like for persons with a combination of vision and hearing loss, and in a few cases, other disabilities as well."  Includes extensive interviews with 12 deaf-blind individuals, including the author, who live in different areas of the world. Topics include family reactions to hearing and vision loss, school experiences, transition-to-adulthood experiences, relationships, careers, communication, and coping with a variety of challenges. Available for purchase on


INVISIBLE: My Journey Through Vision and Hearing Loss, Silver, Ruth. Bloomington, IN: iUniversities, 2012, 278. The memoir of a woman who is deaf-blind.  She shares her life experiences and her struggles to accept blindness, and later, hearing loss. Available for purchase on


LIVING WITH DEAF-BLINDNESS: Nine Profiles, Yoken, Carol. -- Gallaudet College: 1979, 175. This book introduces students and professional workers to nine deaf-blind people including four born with severe or profound hearing loss who gradually lost most or all of their vision due to retinitis pigmentosa; two who suffered sudden, concurrent loss of hearing and vision; two with severely impaired vision as young children who later developed hearing loss; and one person who lost his vision in his early 20s and his hearing 20 years later.


MISS(ED) COMMUNICATION, Kozlik, Lisa. 2000, 1. This is a poem written by a 29 year-old college student who is deafblind. It describes her experiences and missed communication as a result of being a deafblind adult. This document is available on the web at:

DEAF-BLIND PERSPECTIVES, vol. 8, #1, Fall 2000, p. 5.


MY MAGGIE, King, Richard. Chicago: HPH Publishing, 2007, 304. Maggie King was diagnosed with hearing loss at age 4, experienced progressive vision loss, and was diagnosed with Usher Syndrome II as an adult.  This book details her marriage and friendships, her education and career as a registered nurse, her adjustment to vision loss, and career change. Maggie also had three types of cancer and eventually died of ovarian cancer.  In this book, her husband tells the story of her adult life and their relationship. From the book jacket: "King shares one of the most powerful, complex, and memorable love stories ever written . . . Maggie was a woman who understood how to lead a happy life and led it, in spite of the challenges placed in front or her." Available for purchase on


NOT FADE AWAY: A Memoir of Senses Lost and Found, Alexander, Rebecca; Alper, Sascha. New York: Gotham, 2014, 309. This book is a memior of a young woman born with Usher syndrome type III. She is a psychotherapist, spin instructor, volunteer, and an extreme endurance athlete who is almost completely deaf and blind.  It is available for purchase on in several formats (Kindle edition, hardcover, audio).


ORCHID OF THE BAYOU: A Deaf Woman Faces Blindness, Carroll, Cathryn, Fischer, Catherine Hoffpauir. -- Gallaudet University Press: 2001, 253. The story of Catherine (Kitty) Fischer who discovered as an adult that she suffered from Usher syndrome. Addresses her upbringing and Louisiana Cajun heritage, early adult life, and how she coped with the diagnosis of Usher syndrome.


SILENCE WITH A TOUCH: Living with Usher Syndrome, National Technical Institute for the Deaf: 2006, 26 minutes. This DVD introduces several individuals, from early adolescence to adulthood, who are living with Usher Syndrome, a genetic condition that causes both hearing loss and progressive vision loss. The individuals profiled are shown in a variety of settings including at school, at home, and in places of employment. All speak about how Usher Syndrome has changed their lives and about the adjustments and challenges they face. It was produced by the National Technical Institute for the Deaf in cooperation with the New York State Technical Assistance Project Serving Children and Youth Who Are Deafblind. To order, send a check or money order payable to Teachers College for $20.00 (U.S.) or $25.00 (International). The cost includes postage and handling fees. Mail to New York State Technical Assistance Project, Teachers College Columbia University, 525 West 120th Street, Box 223, New York, NY 10027. For further information, call 212-678-8188, e-mail,


SUDDENLY SLOW: Poems, Clark, John Lee. -- Handtype Press: 2008, 32. "Suddenly Slow: Poems," is a limited edition chapbook that showcases sixteen poems by the award-winning deaf-blind poet, John Lee Clark. Clark was born deaf and became progressively blind beginning in early adolescence. Through his poems, "Clark is making sense of a world that comes to him differently," says Morgan Grayce Willow, the author of two books of poetry. "All we need do is place our trust in the crook of the arm of this DeafBlind poet; he then leads us into a world where 'there is no answer in sight.' This is a world of broadened vision emerging from narrower sight, of heightened passion blossoming from experience at a slower pace. Each lyric along the journey into this poet’s 'kind of light' rewards our trust." Cost: $8.00. Publisher's web site:


VICTORY, MEASURED BY THE HEART, Hane, John. 1999, 4. An article highlighting the successful efforts of a woman with Usher Syndrome completing a triathlon with the assistance of a support team of interpreters and guides. Describes Maricar Marquez's experiences as a woman who is deaf-blind and her will to do many things including rock climbing, exploring caves, skydiving, and triathlon. DEAF-BLIND AMERICAN, vol. 37, #3, April-June 1999, pp. 11- 14.


WHAT IS VISIBLE, Elkins, Kimberly. 2014. Hachette Book Group. This engaging novel dramatizes the real events in the life of Laura Bridgman, made famous in the nineteenth century as the first deaf and blind student to receive an education at the Perkins Institute. The author conducted extensive research on Laura's life, and distinguishes fact from fiction in the afterword. 300 pages. Available from


WHERE I STAND: On the Signing Community and my DeafBlind Experience, Clark, John Lee. -- Handtype Press: 2014, 126. This collection of essays from one of the country’s leading voices on issues facing the signing community appears at a time of troubling trends and exciting new developments. Through his lucid and accessible prose, John Lee Clark delves into questions ranging from why hearing parents of Deaf children don’t sign to how written American Sign Language will change the course of Deaf literature. As a second-generation DeafBlind man, Clark also takes us on a tour of his experiences as a student, father, husband, and “client” of special services. Filled with startling observations and unapologetic assertions, Where I Stand challenges and broadens our understanding of an important but often overlooked community.  Publisher's web site:  This document is available on the web at:


WORDS IN MY HANDS: A Teacher, a Deaf-Blind Man, an Unforgettable Journey, Chambers, Diane. -- Ellexa Press LLC: 2004, 263. After his wife died when he was 86, Bert Reidel, a man with Usher Syndrome, moved to Colorado to live with his son and daughter-in-law. Although Bert was an expert Braille reader, he had never learned sign language and his wife had been his “eyes and ears” to the world. This book tells the story of Bert’s life and how he learned sign language beginning at age 86. It illustrates that it is never too late to learn as it describes how sign language transformed not only Bert’s life, but the lives of his family, friends, and the interpreter who was his sign language teacher. Cost $15.95. Publisher's web site:

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