front cover of Metamorphosis
Metamorphosis
Who We Become after Facial Paralysis
Faye Linda Wachs
Rutgers University Press, 2023
Losing her smile to synkinesis after unresolved Bell’s palsy changed how Faye Linda Wachs was seen by others and her internal experience of self. In Metamorphosis, interviewing over one hundred people with acquired facial difference challenged her presumptions about identity, disability, and lived experience. Participants described microaggressions, internalizations, and minimalizations and their impact on identity. Heartbreakingly, synkinesis disrupts the ability to have shared moments.  When one experiences spontaneous emotion, wrong nerves trigger misfeel and misperception by others. One is misread by others and receives confusing internal information. Communication of and to the self is irrevocably damaged. Wachs describes the experience as a social disability. People found a host of creative ways to reinvigorate their sense of self and self-expression. Like so many she interviewed, Wachs experiences a process of change and growth as she is challenged to think more deeply about ableism, identity, and who she wants to be.
[more]

front cover of Never Leaving Laramie
Never Leaving Laramie
Travels in a Restless World
John W. Haines
Oregon State University Press, 2020
John Haines spent the better part of two decades traveling the world: biking through Tibet, kayaking the length of the Niger River, taking the Trans-Siberian Express from Beijing to East Berlin. Various friends and compatriots—frequently from his hometown of Laramie, Wyoming—accompanied Haines on his trips. In 1999, everything changed. While leaping from a moving train in the Czech Republic—something he’d done many times in many places—Haines fell and broke his neck. Damage to his spine left him without use of his legs and radically changed his life.
 
In the years since, Haines has added writer to a resume that already included baker and banker. In Never Leaving Laramie, he pulls stories about traveling into an exploration of home: How a rural home fueled and sustained a worldview. How beauty and danger blend together with humility and ego. How itchy feet combine with the comfort of home in Laramie, a tough railroad town turned college town and a launchpad for wanderers. Throughout, Haines returns to ideas of rivers and movement. He ends with a chapter on a different kind of travel, reflecting on how his accident did and did not change him and the varied ways that people can move through the world.
 
[more]

front cover of Wheeling and Dealing
Wheeling and Dealing
Living with Spinal Cord Injury
Esther Isabelle Wilder
Vanderbilt University Press, 2006
Before his motorcycle accident, Travis saw himself becoming a pro football player. Now, paralyzed from the nipple down, he says, "At times it's a pain in the ass-literally and figuratively. But it allows me to not be as threatening to some people [the way I was when] I was still an athlete. Because a lot of times male interaction is done on the basis of pissing contests: I'm bigger, I'm tougher, I'm stronger, I'm smarter. When you're in a chair, they don't look at you like that." At the same time, Travis complains that many people are uncomfortable interacting with him because of his disability. "I would rather you make a mistake and deal with me than not deal with me at all."<>

Meghan is a high-level quadriplegic, living alone, who uses a power wheelchair and requires daily attendant care. She laments, "There are so many people who think we're asexual, we're not pretty, and we're creeps and weirdoes." To dispel this myth, she envisions a fashion show of women in wheelchairs parading down a runway. Meghan has been involved in a number of sexual relationships since sustaining her injury. While she doesn't think her disability has diminished her sexual pleasure, she feels that it has affected her sexual performance: "Well, you can't move it. You can't, like, bump and grind."



In 32 unusually frank in-depth interviews like these, the men and women in this book freely discuss their sex lives, their beliefs about God, how they want others to treat them, and whether they want to walk again. In each chapter the author presents their complex voices and comprehensive research about different facets of spinal cord injury (SCI).



Wheeling and Dealing explores the extent to which people with spinal cord injury locate their challenges in their physical impairments or in the social environment. Some disagree with those disability activists who focus almost exclusively on the latter, but the author examines this issue in depth.



Topics include:

--Physical health from degrees of loss of function to problems like pressure sores, temperature regulation, and bladder control.

--The stages of psychological adjustment and rehabilitation.

--Obstacles to sexual intimacy, treatment of erectile dysfunction, and new sources of sexual pleasure and emotional intimacy.

--Religion and spirituality.

--Social and political beliefs, with those with SCI weighing in on everything from welfare services to embryonic stem cell research.

--Dating, marriage, and parenting.

--Friendship networks and social supports; concerns about transportation and accessibility; stigma.

--Education, employment, and economic consequences.



This book is the recipient of the 2004 Norman L. and Roselea J. Goldberg Prize from Vanderbilt University Press for the best project in the area of medicine.

[more]


Send via email Share on Facebook Share on Twitter