Barriers and Belonging is an anthology of personal narratives by individuals whose lives are affected by disability. Most of the people are telling their own stories, but there is also the narrative by the mother of a profoundly disabled child who at fifteen has outlived his life expectancy a dozen times over. The personal narratives are as varied as the people who write them. The unifying question is disability, how it impinges on their lives, and how disability studies affects them and their understanding of disability.
Some of the narratives are incredibly moving. Some are shocking. The first narrative comparing the accommodations of a top-ranked university compared to Berkeley, a much more welcoming and inclusive university, was eye-opening. There is a profound difference between compliance and inclusion and she revealed how very unwelcoming compliance can be.
“Bumping into Things While Treading Carefully” is the narrative of a woman who is visually impaired. Perhaps because she is a poet, she writes so movingly about her disability. I found her the most interesting of the contributors, in part because she does not completely buy into a single understanding of her disability and how she fits into the disability movement. She wants to see and feels judged by the “blind police” for her desire. This is a common conflict, not just among the visually impaired. Another contributor who is hearing impaired embraces deafness and ASL, feeling robbed of community through his childhood when he used hearing aids. If people take only one thing away from reading Barriers and Belonging, I hope it is that there is no one-size-fits-all answer.
There are several narratives from people who have invisible disabilities. Disability theory has also embraced many of the terms of art of other people who are oppressed, referring to not disclosing their invisible disabilities as passing. Revealing their disability is “coming out of the able-bodied closet.” The poet who wrote so beautifully refers to herself as transabled because she is born blind but feels sighted.
This feel more like a textbook than an anthology because the reading is heavily directed by discussion questions. The chapter introductions tell you what you will read and how you should think about what you read. I think I would have liked this book so much more without the chapter introductions which felt intrusive and overly prescriptive. I perceived it as being told what I was required to take away from my reading.
I was interested in Barriers and Belonging because I am disabled. I found myself emotionally drawn in by some narratives and just as strongly alienated by others–particularly those who enthused about embracing their disability. This is, of course, because of who I am, not because of who they are. They are writing their truths, but their truths are not mine. I am, I suppose, in the language of disability politics, trapped in the ideology of ability. When one of the writers shares that he views the accident that damaged his spinal cord, that being paraplegic is a gift, I know I am being ableist in thinking he is making the best of a bad situation, but a collection of people sharing their pain and conflict demands an honest response.
Much of what they have to say, though, is important. A large part of what makes a disability disabling is that our buildings, streets, houses, institutions, and culture are all oriented toward ability. The American Disabilities Act has pushed public buildings to make themselves accessible, but not all have embraced that wholeheartedly or have done it in ways that stigmatize the people they are supposed to be including. An example that made me groan was of a university that put all the people with disabilities in two dorms. I groaned because I know when arranging housing for a conference, I did the same thing, thinking they would want to be in the dorm closest to the cafeteria, plenaries, and classrooms–closer to the action. Would they have preferred a longer trek to being shoved together in what amounted to a segregated dorm?
The narratives of those with invisible disabilities are the most raw and painful. Wheelchairs and white canes may never allow the person with a disability to “pass” but they are also not told it’s all in their heads or that they are malingering. A women who has had chronic, painful migraines since kindergarten is doubted, questioned, and challenged by teachers, doctors, and counselors. She has many challenges, but they are made more complicated and difficult by doubt, disbelief, and disregard. If the disability is not visible, some people are not willing to accommodate it. Think for a minute, have you seen someone ostensibly able-bodied using a handicapped space and been angered because they appear able-bodied? I have. But what if they have fibromyalgia, neuropathy, vertigo, or a host of other invisible disabilities that make every step challenging?
This book gives us all a lot to think about. It’s challenging, provocative, and without doubt, you will find things you agree with and things you don’t. Not all the writers in the anthology agree themselves about what models of understanding disability in society is the best fit. Most of all, though, I think you fill find it deeply moving, the commitment and strength of so many people to keep striving. That student who struggled with so much pain took nine years to complete her four-year degree, but what willpower and endurance that must have taken. The woman who is planning a Thanksgiving dance with her daughter and granddaughter, she moving her arms, her daughter moving her legs, a dance of beauty and joy. There is no disability that overwhelms the human spirit.
Barriers and Belonging will be released February 17, 2017. I received an advance e-galley from the publisher through NetGalley.
- Barriers and Belonging at Temple University Press
- Michelle Jarman
- Leila Monaghan
- Alison Quaggin Harkin