Reviewed by Martin Atherton (University of Central Lancashire)
Published on H-Disability (September, 2019)
Commissioned by Iain C. Hutchison (University of Glasgow)
Don Fulk was an American disability rights campaigner who was deafened by spinal meningitis at age three and later paralyzed in an accident when he was eighteen, which left him a quadriplegic wheelchair user. Despite these challenges, he went on to find employment, marriage, and independence. This book details events in his life, told in the first person but written by his friend and colleague Janet Allen and published twenty years after his death in 1998. Allen based the book on stories and recollections related to her by Fulk in American Sign Language over the course of their friendship and subsequently translated into written English. This makes Allen’s account both a unique testament and a difficult book to classify. Although written in the first person, this cannot really be considered an autobiography as it was essentially ghost written long after his death and the label of biography does not fit easily either because of the use of the first-person voice throughout. There is also very little detail about Fulk’s family background beyond the names of some of his siblings, and we are told nothing about his parents or their role in his upbringing. The methodology in producing the text is also problematic as the process of recalling and translating Fulk’s history is not identified. Allen does not indicate if she kept records of their conversations or relied solely on memory, and it would be useful to know this. As there is no direct transliteration from signed language into spoken or written language, there is always an element of trust between signer and speaker/writer that the message being conveyed is an accurate one. While it is not the intention to cast any aspersions on Allen’s efforts, it has to be acknowledged that Fulk did not have the opportunity to check and amend any of the thoughts and experiences ascribed to him. This places an even greater responsibility on the ghost writer; the overall story might be weakened as a result, as will be discussed later.
Despite these reservations, the book does offer some illuminating insights into the issues faced by both deaf sign language users and people with physical limitations that leave them reliant on others for their most basic life needs. In common with many other deaf people, communication with the hearing world was severely restricted for Fulk. In the book, he recounts that he had virtually no dialogue with his family and he did not go to school until he was ten years old. It was only on the morning of his first day at school that he claims to have learned his first word, when his father wrote his name on a piece of paper. This instance is an example of the issues that can arise from the distinctive methodology used to produce the book; it seems likely Fulk meant that this was the first written word he learned, but as his comment has been reported verbatim, we cannot be sure and it was not possible for his amanuensis to be checked given he had died many years earlier. Entering school finally gave Fulk a sense of belonging and access to meaningful interaction with a peer group, but this was to be cut short following a swimming accident. Fulk broke his neck when diving and he spent the rest of his life confined to a wheelchair, reliant on others to clothe, feed, and clean him. He learned to sign in a rudimentary form using the restricted movement in his arms and to write notes using a pen held in his mouth. He experienced physical and emotional abuse in institutional care homes, and this eventually led him, through encounters with disability activists, to become an advocate for disability rights in America.
The book is not all doom and gloom. There are several humorous and incredible stories. Fulk was eventually provided with a motorized wheelchair, which aided his bid for independence. On one occasion, he and his girlfriend decided to go to a cinema, which involved an eighteen-mile round trip lasting sixteen hours in extreme heat, during which they begged drinks from houses they passed. Other journeys involved hitching lifts with strangers when batteries died and memorably getting a wheel jammed in a railway track with no one around to rescue him. Fortunately, a passing motorist arrived before a train approached and tragedy was averted. Fulk also illustrates how he found love and married, although this too was not a smooth transition and resulted in periods of separation that created further dependency issues in terms of his care and welfare. Fulk never complained and clearly took great pride in the achievements he and others had in improving life for disabled people in Arizona and beyond.
Throughout the book, these events are recalled in a matter-of-fact manner and the impact often has to be assessed by the reader. Indeed, such is the tone of the text that details such as those about his age when seeing his name for the first time could easily be missed by a casual reader. Several interesting issues are raised throughout the book but never fully explored, and this is the book’s inherent weakness. By merely retelling details of his life in a larger chronological manner, there is little contextualization of the events and there is no discussion of why or how these issues arose or how they affected those involved, beyond the purely factual. It is understandable why this style might have been adopted, perhaps as a means of keeping true to Fulk’s memory and experiences, but the narrative is patchy and incomplete as a consequence. A better approach might have been for Allen to have written a more traditional biography of Fulk, using his stories and her own memories as inspiration and illustration. This would have given much more relevance to his life story and allowed Allen to tell us more about his achievements and legacies. The postscript hints that these were extensive and far reaching, but the book never fully explores these either. Producing this book was clearly a labor of love for Allen, but a more detached and objective telling of Fulk’s story would have created a clearer understanding of the man and his life.
If there is additional discussion of this review, you may access it through the network, at: https://networks.h-net.org/h-disability.
Martin Atherton. Review of Fulk, Don; Allen, Janet, An Invincible Spirit: The Story of Don Fulk.
H-Disability, H-Net Reviews.
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