John Lee Clark. Where I Stand: On the Signing Community and My DeafBlind Experience. Minneapolis: Handtype Press, 2014. 128 pp. $14.95 (paper), ISBN 978-1-941960-00-4.
Reviewed by Michael Reis (Indiana School for the Deaf)
Published on H-Disability (October, 2015)
Commissioned by Iain C. Hutchison (University of Glasgow)
John Lee Clark comes from Minneapolis, Minnesota. He is the owner of the Tactile Mind Press and currently works as a braille instructor. He has been deaf since birth and he became deaf-blind during his adolescence. He graduated from the Minnesota State Academy for the Deaf and attended Gallaudet University.
I was glad to review this book because I had some exposure to deaf-blind people in south central Louisiana during the 1980s, first as a van driver, then as a tactile interpreter, and finally as the secretary of the State Association of the Deaf Blind. During my undergraduate years, I was inspired by the antiwar classic Johnny Got Your Gun (1938) by Dalton Trumbo—the story of a World War I soldier who became deaf and blind and lost his arms and legs in battle. Trumbo’s book showed how the soldier developed ability to communicate with the hospital staff and to keep track of the hospital routine. My own circumstances are that I have no visual impairments, but I am a congenitally deaf person. I grew up in Indiana.
Clark’s book is a collection of essays about deaf-blindness and the American Sign Language (ASL) culture of deaf people. It also contains excellent poetry by Paul Hostovsky that illustrates the visual imagery of ASL. Hostovsky is a staff interpreter for deaf-blind clients in a Massachusetts state agency and he has written several poems about the deaf experience.
Clark discusses the process of creating poetry and the sense of feeling through braille. Using “The Star Spangled Banner” as an example, he explains the problems of translating poetry from English into ASL. ASL is a visual language with facial expressions and hand movements while English is based on spoken and written words. Some ASL poets have expressed reluctance to have their ASL poems translated to speech or into English because they fear that their poetry will be bowdlerized and that much will be lost in translation. Nevertheless, Clark encourages deaf poets and writers to read widely in English and to write poems in beautiful ASL regardless of the translation trap.
However, he complains in his chapter titled "The Case for Writing about Disability" that disabled new writers try too hard to be mainstream in their early writings and endeavor to hide their disability. It should be pointed out that new writers frequently want to avoid being pigeonholed into a specific category governed by the likes of race, gender, nationality, etc. It is natural for new writers to strive to be talented writers with freedom from being categorized. In another chapter, he highlights how the black poet Paul Lawrence Dunbar (1872-1906) received much praise for his poems in black dialect, but his poems in standard English did not do well with the critics. Dunbar felt that he was considered primarily a black poet, rather than an accomplished poet.
While encouraging deaf-blind students to develop their literary skills, Clark acknowledges that time constraints in college courses present a barrier for deaf-blind students. The academic environment is designed for the speed, ease, and convenience of fully abled students. Not many allowances are made for spatial and physical impairments.
The author gives a vivid description of how he exerts his own independence as the disabled parent of an able-bodied family. For example, cooking and home caring are his responsibility. Beyond the home, transportation alternatives, such as his ease of use of the city transit system and car sharing with colleagues, enables him to independently undertake activities ranging from shopping to attending meetings and social events. The book highlights other households where deaf-blind people have shared responsibilities and shared duties with sighted partners. He helps to demolish the misconception that disabled people have to rely on other family members to meet their physical, social, and transportation needs.
Clark gives an affectionate description of his old school, Minnesota State Academy for the Deaf, and its buildings and certain rooms. It is evident that his memories are based on the days when he still had good vision. The reader might, however, contemplate how the experience of a deaf-blind student might compare with Clark’s.
Clark adores Saint Paul’s skyway system. This consists of a series of elevated pedestrian walkways that connect the second floors of various buildings and enable him to avoid navigating the downtown area at street level. The skyway system gives him increased mobility and access. The book might have, therefore, provided more detail of the challenges faced in other locations by deaf-blind pedestrians: for example, their need to be familiar with the number of steps between familiar landmarks, the textures of various floors and pavements, and the smells and atmospheres of different business premises.
My brief work with deaf-blind people in Louisiana demonstrated their challenging and complex relationships with the signing community. Because of its French-Acadian heritage, Louisiana has a large number of deaf people with the Usher Syndrome gene, which leads to blindness in adult life. Many deaf people grew up in the Louisiana Deaf School, yet it was tragic to see old school friendships end when one experienced sight loss. Most deaf people in Louisiana were aware of Usher Syndrome for many years before its onset and it always caused fear and apprehension for them. One explanation for their concern was that their sense of sight was always paramount and the prospect of losing their sight was therefore unnerving. The Louisiana Association of the Deaf was not accommodating of the newly blinded deaf. In the 1980s, Seattle became a popular destination for many deaf-blind people from Louisiana. That was a surprising development as Washington State did not have a historical and cultural relationship with deaf-blindness, but its popularity was because it offered enhanced social support to people who were deaf-blind.
Clark does not go into much detail about his connections to the signing community and the political and social relationships between the deaf-blind people and Deaf people. The author’s own visual deterioration, again in light of the title, could have been described in greater depth, such as its impact on his deaf school friends and the deaf school administration. Unlike Louisiana, Minnesota does not have a sizable population of deaf-blind people. It would also be interesting to learn how his college friends and the Gallaudet administration regarded his double disability and how deaf-blind people engage with the signing community of the Twin Cities: Minneapolis and Saint Paul.
In spite of these shortcomings, Clark’s excellent book reveals various aspects of his deaf-blind life, both inside his own family and in the wider environment. It is primarily a literary work with poetry in English and with ASL poems bravely translated into English. Clark acknowledges the difficult task of creating poetry in English, ASL, and braille, but he encourages aspiring writers to nonetheless persevere in developing literary skills.
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Citation:
Michael Reis. Review of Clark, John Lee, Where I Stand: On the Signing Community and My DeafBlind Experience.
H-Disability, H-Net Reviews.
October, 2015.
URL: http://www.h-net.org/reviews/showrev.php?id=43472
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