Book Review: Barriers and Belonging (Michelle Jarman, Leila Monaghan and Alson Quaggin Harkin)
Reviewed by Michael Northen
"Who is my audience?" is one of the first questions beginning writers are told to ask themselves. For the editors of Barriers and Belongings: Personal Narratives of Disability, Michelle Jarman, Leila Monaghan and Alison Quaggin Harkin, this question is the guiding star. One doesn't have to be involved in a disabilities studies chat for long to hear the prospective teacher of an introductory course on disability studies ask about available materials. Inevitably, many of the suggestions are offered are almost overwhelmingly theoretical texts written by academics for academics. As Jarmon and Monaghan point out in their introduction, "Despite the breath of the field, there are few introductory works available." Their mission, in short, is to provide one.
Barriers and Belonging sets out to wipe the slate clean and assume that they are dealing with a beginning course for undergraduates who, while they may have some sort of interest in disability, know little about it and almost nothing about prevailing disability theory. One of the major distinctions that one encounters in almost any discussion of disability is the difference between the medical model and models of social or cultural construction. To the lay person, this is not an obvious distinction, nor is it even apparent why the medical model is problematic in the eyes of many disability advocates. What Jarmon and company do is what any teacher with an instinct for how learning works would do and that is go back and meet the students where they are. They assume that most students become engaged not by being overlaid with theory but by meeting other individual voices that they can engage with as actual human beings. Among non-academics, the greatest number of disability-related books sales comes from works of personal narrative. The creators of Barriers and Belongings seize upon this fact and use personal narrative as their medium.
With the knowledge that disability is a huge umbrella encompassing many varied points of view, Jarmon, Monaghan and Harkin have structured the book under the belief that you can lead a horse to water. The book is divided into six sections, beginning with those that are essentially narratives of personal experiences and progressing ultimately to the final section "Theories and Lives." Linking these are graduating units in disability and families, disability and communication, mapping complex relations, and disability identity that move students from perceiving disability as an individual problem to the claiming of disabiity identity and the conceptual underpinning that this implies.
As promised, the first section of the book, "Laying the Groundwork," allows readers to be introduced to the voices of a people living with a variety of disabilities. Importantly, these are voices of now confident individuals describing their experiences as young people entering college. They provide the double function of giving non-disabled students insight into the kinds of barriers and attitudes experienced by students with disabilities in the academic world, while providing stories that the latter can relate to. What it will also reveal to many non-disabled readers in non-accusative tones is their own complicity in ableist assumptions, including an incipient realism that ableism is actually a point of view. In the opening essay, "From Poison Ivy to Live Oak," Alyse Ritvko, compares her experiences at an Ivy League College where recognition of disability was only begrudgingly given to those at Berkeley, which embraced her. Shayda Kafai's "Speaking Madness" broaches a subject familiar to some freshmen entering college, whether or not to reveal a psychological disability and be subject to the stigma that so often attends it. The anthology editors also hint at the importance of their own work by including Zachary Richtor's 'piece describing how he was transformed by reading the work of a single writer on the experience of disability. A common thread of many of the essays is how their personal experiences with disability in college led them to accept a disability identity and ultimately into activism.
On the assumption that moving outwardly in a set of concentric circles from which the individual self is the center, people generally relate to families, the second section of Barriers and Belongings is given over to essays that collectively look at how disability functions within a family. While the essays focus primarily on parenting, there is also a nod to the role of disability in partner and sibling relationships. This section may be the weakest link in the chain, but individual essays may still resonate with students. A case in point is David Kidd's essay, "My Brother's Traumatic Brain Injury and it's Effect on Me" in which he makes a candid admission that non-disabled readers should take seriously, "But if it were not for my own experiences of living with TBI, it is unlikely that I would have altered my view of disabled people."
If the section on families seems a bit less thought-provoking than one might have hoped for, the third portion of the book, Disability and Communication more than makes up for it. Two essays that are likely to be particular fodder for discussion are Blake Culley's "ASL in a Hearing World" and Tasha Chemel's "Bumping Into Things While Treading Carefully." In a sense, they begin from a common position, but end up drawing different conclusions from it. Culley's essay lays out an unfortunately all too common phenomenon, one that recapitulates the historical experience of deaf people generally. She writes that from a very early age, "I had learned to view sign language as a negative practice, in that it formed my social identity as deviant from everyone else." Because she could speak relatively clearly, her goal was to "pass" as normal, rejecting ASL and resisting interpreters. Growing up she essentially lived between two worlds, not really feeling a part of either. In high school, however, she became aware of the sense of community shared by ASL users that eventually led her to embrace her identity as Deaf.
Chemel's essay provides a counter narrative. One of the things that readers of Barriers and Belongings begin to discover is the current trend in disability studies to reject the medical model of disability and to see disability as essentially a social construction. This is not a position that denies the reality of physical impairment, but one that places much of the responsibility for the issues that those with disabilities face on the society in which they live. It rejects the idea that individuals need to be "fixed" in order to be treated equally, and by implication does not want to hear about talk of cures. Chemel, who was born with a hereditary degenerative eye condition, sees advocates of the social construction model as becoming increasingly doctrinal, to the point of becoming "the blind police," telling her that she should not be writing about wanting to see – despite the fact that she does. Her current project is to provide alternatives to the social model, one of which she calls the narrative approach: "The narrative approach to disability honors the uniqueness of each person's story of disability and recognizes that the telling of the stories is shaped by personal, familial, cultural and political forces." Chemel's approach, while it may run upstream from the progression of the anthology, fits in extremely well with its basic approach as a tool for teaching disability. A comparison of Culley�s and Chemel's conclusions about their situations would make for a spirited discussion in any class.
The second half of the book, composed of sections four, five and six enlarges and complicates most of the themes that have emerged in the first half. Part four, "Mapping Complex Relations" includes the essays of Caitlin Hernandez and Emily K. Michaels, whose work like Chemel'shas previously appeared in Wordgathering. Among others, some of the issues this section deals with are the ways in which people adjust to disabilities and the stereotypes they face. In this context, Rachel Anderson's essay "Brother and Sister in Arms" is particularly relevant because it deals with two groups not generally highlighted in discussions of disability, veterans of war and African Americans. For both groups, as Anderson points out, disability has a special stigma as well as unique practical problems. Her essay and that by Michael T. Salters are also a nod to the changing face of disability and to discussions of what society owes its citizens.
As hinted at in the discussion of Culley's and Chemel's essays, one of the most difficult considerations is what disabilities scholar Simi Linton termed claiming disability. Section five of the book addresses this issue. It is not merely a matter of accepting a visible disability in the face of a society that puts pressure on us to be "normal" in the way that Culley mentioned, but it is also an especially complicated problem for those with invisible difficulties, as Kafai�s essay in the first section noted. Nancy La Monica, Megan L. Coggins and Susan Macri highlight the risks of claiming learning and psychological disabilities. Coggins essay also introduces the problems created when religion and religious views are brought into the conversation. By in large, each section of the book has worked to include a wide representation of disability, even when occasionally the essays did not add a great deal to the conversation. In that light, it is a bit odd that in this part of the book, especially given the attention paid to veterans in the previous section, there is no essay that deals with question of identity for people with acquired disability, particularly those such as spinal cord injuries or multiple sclerosis in which one's 'sense of identity becomes dramatically altered.
The final section of the anthology, "Theories and Lives" is the natural culmination of the structure that Jarman, Managhan and Harkin have devised for the book. In an interesting move the "final part features chapters by engaged student activists as well as graduate students working within the field of disability studies." Keeping in mind the purpose of the book as a teaching tool and introduction for students whose knowledge of disability may be slight, this makes a great deal of sense, psychologically. It allows readers to see the progression of thought by which someone might move from little understanding or from an insecurity about their own disability, into a role in which advocacy – either through action or academics – might become a central part of their lives. While each of these essays is well worth reading, one that is likely to stand out in readers' minds is Rodney B. Hume-Dawson's quot;Flourishing With Polio." Hume-Dawson grew up in Sierra Leone and his account underscores how something as obviously embodied as the affects of his polio draws its major significance from the culture of which it is a part. Having approached the end of the anthology, readers are likely to understand and agree with Hume-Dawson's open assertion,
Gone are the days when the focus of telling one's disability story was about overcoming one's challenge. For me and many others whose work I have been privileged to read, our focus is not so much on the triumphant aspects of our lives but on telling the story from a social perspective.
No doubt, Jarman, Monaghan and Harkin concur.
Title: Barriers and Belonging