Reviewed by Diane R. Wiener
Content Warning: Childhood illness, disablement, references to seizures and convulsions in the context of epilepsy, ableism, sanism, homophobia.
As Michael Northen wisely and kindly noted in his discussion of Shane Neilson’s Constructive Negativity, “Neilson may be Canada’s most fervent advocate for the need to establish disability literary work as a domain for serious critical consideration.” With Roxanna Bennett and Ally Fleming, Shane edited the foundational Canadian Disability poetics collection, Imaginary Safehouse. A physician, poet, cultural critic, and teacher, Dr. Shane Neilson has written so much excellently weird and wild poetry that I have had the privilege and joy of reading and reviewing, including works that appear in For the Living and Revolutionary Doctrine of the True Faith. He has welcomed me to Crip poetry events, as well. Now we fortunate readers have been gifted his family love letter, a memoir from deep within Neilson’s Neurodivergent bodymind.
It could be difficult, perhaps, for any if not most neurotypical people to imagine what it might be like to be a Disabled doctor, the father of two Disabled children, who advocates tirelessly with his wife and partner, the children’s mother, to ensure that their young children have access to necessary not merely “adequate” medical care and related supports. The philosophical questions of what illness means, and why and how people–particularly children—become unwell, and endure disablement, are central to this unwaveringly honest book. The words arise from the pages as only Shane can deliver them, with few pauses, without apology, and with swerving yet direct, clean prose that is simultaneously compassionate, funny, sad, and fierce.
In Saving, there is music, and Jesus and the devil appear in various guises (a lot). There are also Big Gulp sodas, letters and meetings galore, uniquely Guelphian scenes, and monsters that (who) manifest in both idiomatic and political forms. My favorite parts are the examples of dialogue with the children, especially when they are little and toddling earnestly. There are also serene, sweet scenes of conversation interspersed with and interrupted abruptly by a child’s convulsions from epilepsy. The book draws in and rattles the reader as we are invited to bear witness to the seizures occurring in the parents’ presence and the suffering of another young one. A two-year-old son is facing epilepsy as his older sister, young as well, is negotiating childhood depression.
In reading Saving, Karen Connelly was understandably reminded of Ian Brown’s The Boy in the Moon. I was reminded of so many Crip memoirs underscoring the necessity of speaking out against intersectional forms of oppression as a matter of life and death. Neilson addresses memories of enduring his father’s alcohol-laden, vitriolic homophobia in the context of Shane’s and his mother’s church-going–this scene occurs, for example, in one of the many “Burning Crown Jesus” (aka “BCJ”) interludes in the book.
Confusingly while important for a young Shane, his parents figure complicatedly in the scenes that follow this particular passage, as Shane’s father makes sure Shane knows he’s there for him and Shane’s mother refuses to clean up another huge, disgusting mess. “Everyone knows that true salvation requires praying for the lost,” Neilson says, discussing why his mother perhaps “stayed with [Shane’s father] until she died.” (p. 119) For Neilson, a dedicated approach to facing grief squarely and strategically includes adopting irony as a central component for surviving the seemingly unremitting suffering as described in these passages and elsewhere.
Neilson’s offbeat humor is here co-mingled with the horror of losing control and its many truths. “My own personal J is going to die,” Neilson says, “[he] will sleep in the sand dunes with the rock hyraxes. I must save him. I must remove him from his bondage, prevent his eventual scaffolding. I must get him out of here, take him to the Land O Gulps, and perform the transubstantiation. The fate of the world depends on it.” (p. 122) This ironically religiously-infused passage is an illustration of how Shane’s past influenced his advocacy and other choices when he became a father himself. Moreover, this passage, like so many others, underscores and out-pictures for readers the vivid machinations of Shane’s beautifully Neurodivergent thinking process.
Salt and peppered in the book are math formulas, signs of emergency rooms under construction, and examples of interior monologues. I laughed out loud when a character named “nice lady” gets to learn some things. There are great questions in this book, as I mentioned above. One of these sets of questions, in a powerful sequence, appears toward the end: “Are parents and children doomed to perpetually try to get ahead of some ancestral monster that pursues us? If yes, can our lives still be called free? Should I free myself from monsters by focusing on the future, on faith?” (p. 204).
Part of the future–and believing in its possibilities–is play, as Neilson goes on to articulate. Playing when there is a threat of losing the access to playing in the first place, it seems, is nearly always on his mind. Shane says, “Threat imposes a different chronology. Threat teaches that there is only so much time to be loved in this world. Threat casts compromised light upon memory. Threat does not diminish these memories, but it alters the mood of their recollections.” (p. 204) So much more important, then, to play with the children, Neilson tells us. “The love story,” he tells us, “has to be enough.” (p. 237).
Title: Saving: A Doctor’s Struggle to Help His Children
Author: Shane Neilson
Publisher: Great Plains Publications
Year: 2023
Back to Top of Page | Back to Book Reviews | Back to Volume 18, Issue 1 – Summer 2024
About the Reviewer
Diane R. Wiener (she/they) became Editor-in-Chief of Wordgathering in January 2020. The author of The Golem Verses (Nine Mile Press, 2018), Flashes & Specks (Finishing Line Press, 2021), and The Golem Returns (swallow::tale press, 2022), Diane’s poems also appear in Nine Mile Magazine, Wordgathering, Tammy, Queerly, The South Carolina Review, Welcome to the Resistance: Poetry as Protest, Diagrams Sketched on the Wind, Jason’s Connection, the Kalonopia Collective’s 2021 Disability Pride Anthology, eMerge, and elsewhere. Diane’s creative nonfiction appears in Stone Canoe, Mollyhouse, The Abstract Elephant Magazine, Pop the Culture Pill, and eMerge. Her flash fiction appears in Ordinary Madness; short fiction is published in A Coup of Owls. Diane served as Nine Mile Literary Magazine’s Assistant Editor after being Guest Editor for the Fall 2019 Special Double Issue on Neurodivergent, Disability, Deaf, Mad, and Crip poetics. She has published widely on Disability, education, accessibility, equity, and empowerment, among other subjects. A proud Neuroqueer, Mad, Crip, Genderqueer, Ashkenazi Jewish Hylozoist Nerd, Diane is honored to serve in the nonprofit sector. You can visit Diane online at: https://dianerwiener.com.