Wheeling and Dealing: Living with Spinal Cord Injury

by Esther Isabelle Wilder

Overview

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.

Product Details

ISBN-13:	9780826515346
Publisher:	Vanderbilt University Press
Publication date:	09/29/2006
Pages:	368
Product dimensions:	6.00(w) x 9.00(h) x (d)

About the Author

Esther Isabelle Wilder teaches sociology at Lehman College and the Graduate Center, CUNY. Current research focuses on women's reproductive health, the sociology of disability, and ethnic and religious differences in healthcare. Her work has appeared in more than a dozen journals. She is co-author of Voices from the Heartland: Needs and Rights of Individuals with Disabilities (Brookline, 2005).

Table of Contents

Contents

Acknowledgments

1 Introduction
Biomedical and Social Models of Disability
Research Methods and Sampling
The Language of Disability

2 Physical Trauma, Social Consequences
The Demographics of Spinal Cord Injury
The Physiology of Spinal Cord Injury
The Epidemiology of Spinal Cord Injury
Fault and Blame
Spinal Cord Injury and Mortality
Physical Health and Psychosocial Well-Being
Health Problems Associated with Spinal Cord Injury
Pressure Sores
Temperature Regulation
Bladder and Bowel Dysfunction
Sympathetic Nervous Dysfunction
Chronic Pain
Weight and Nutrition
The Daily Dose
Substance Abuse
Suicide and Health
Summary

3 Psychological Adjustment and Rehabilitation
Psychological Factors Influencing Adjustment
Demographic Factors Influencing Adjustment
Gender
Age at Injury
Severity of Impairment
Time Since Injury
Environmental Factors Influencing Adjustment
Stages of Adjustment and Recovery
Shock
Anxiety and Depression
Denial
Anger
Adaptation
Adjusting to Life with a Spinal Cord Injury
The Process of Recovery
Smooth Transitions
Happiness and Life Satisfaction
Therapeutic Intervention and Rehabilitation
Counseling and Support
Summary

4 Sexual Identity and Sexual Intimacy
The Sexual Arena
The Physiology of Sexual Functioning in the Aftermath of Spinal Cord Injury
Sexual Activity and Sexual Performance
Obstacles to Intimacy
Treatment of Erectile Dysfunction
Secondary Erogenous Zones and
New Sources of Sexual Pleasure
Sexual Counseling
From Sexual to Emotional Intimacy
Perceptions of Masculinity and Femininity
Summary

5 Religion and Spirituality
Religion and Spirituality
Religion as a Source of Comfort and Strength
Making Sense of Spinal Cord Injury
Making Peace with Religion
Faith and Healing
Disillusionment with Organized Religion
"My Disability is a Positive Force in My Life"
Summary

6 Social and Political Beliefs
Social and Political Ideologies
Political Identification
Euthanasia
Deserving and Undeserving Benefit Recipients
Special Treatment
"People Push Me Around"
Necessary Accommodations
Summary

7 Dating, Marriage, and Parenting
Relationships and Reproductive Rights
The Dating Scene
Barriers to Involvement with Disabled Individuals
Disability and Dating Preferences
Among Individuals with SCI
The Ideal Partner
Relationships with Service Providers
Unhealthy Relationships
Union Formation and Dissolution
Current Relationships and Post-Injury Unions
Marital Intentions
Spinal Cord Injury and Fertility
Parenting Intentions
Summary

8 Friends and Strangers
Social Relationships
Social Support and General Well-Being
Friendship Networks
Divergent Interests and More Meaningful Friendships
Lack of Transportation and Accessibility Concerns
Leisure and Recreational Activities
Social Stigmatization and Lack of Understanding
Birds of a Feather Flock Together
Friends with Disabilities
Socialization and the Internet
Summary

9 Economic Conditions and Family Responses
The Economic Consequences of Spinal Cord Injury
Economic Status and Life Satisfaction
From Riches to Rags
Ongoing Financial Challenges
Government Support
The Cliff Effect
Shelter but Not Serenity
Spinal Cord Injury as a Family Disability
Caregiving and Conflict
Sibling Stress
Parents with Disabilities
Closeness and Comfort
Summary

10 Education and Employment
Educational and Vocational Achievement
Educational Rights and
Accommodations in the Schools
Educational Attainment and Aspirations
Employment Experience
Internal Obstacles to Employment
Not Enough Hours in the Day
External Barriers to Employment
Career Changes and Career Aspirations
The Disability Employment Sector
Summary

11 Conclusions
To Walk or Not to Walk
Christopher Reeve
Stem Cell Research
"It Could Have Been Worse"
Toward a Revised Conceptual Framework
Toward Prevention and a Cure

Notes
Bibliography
Appendix: Study Participants
Index

Editorial Reviews

A meticulously researched study of physical disability. What is particularly useful about this book is that Wilder marries social science and biomedical perspectives in her analysis. Moreover, the range of topics covered by the author will make this a useful text in the disciplines of nursing, social work, and health studies.
—Jacqueline Low, University of New Brunswick - Fredericton

This book is very well researched and covers a wide range of theories relating to disability and impairment - social, psychological and biological. A diverse range of issues are discussed including, education, friendship, psychological adjustment and sexual identity. Central to the book are 32 in-depth interviews with people with spinal cord injuries. Quotations from these interviews are interspersed throughout the text bringing the theories and the topic of each chapter to life in a powerful way.
—Sally French, Open University

From the Publisher

Reviewer: Diane M. Rowles, MS, ACNP, BC (Shirley Ryan AbilityLab)
Description: This well-written book addresses the experiences and issues persons with spinal cord injury face by reporting on interviews of 32 individuals. Though those interviewed are from one specific geographical location, the book reveals opportunities, challenges, frustrations, and successes of persons with spinal cord injury (SCI). The book is a nice combination of thoughts and quotes from these interviews and a review of societal views and expectations.
Purpose: The book does a nice job of meeting the author's objectives of describing the experiences of 32 individual with SCI by exploring the physical and social changes experienced after their SCI. It describes how the experiences influence well-being, employment, family and friend networks, and economic well-being. It provides a roadmap of what lies ahead including shared concerns, challenges, struggles, triumphs, and hopes as described by those interviewed. This is a refreshing book that provides thought-provoking quotes and information.
Audience: According to the author, the book provides a roadmap of what lies ahead for those with SCI, their families, friends, and practitioners. It is good for anyone whose life is touched by or has an interest in SCI. It is basic enough to provide information for the beginner and thorough enough to provide information for the expert.
Features: As to be expected, the opinions and responses to questions vary greatly among those interviewed. The author does an excellent job of presenting the complete range of answers to the topics and questions while incorporating information from literature. The topics include social, physical, psychological, economic, and political issues that confront these individuals. The only shortcoming, and it is acknowledged by the author, is the limitation of the interviews to a group in one geographic location, thus potentially limiting the attitudes, experiences, opportunities, and supports. This also potentially limits the ability to generalize the experiences and opinions reported in the book to other persons with SCI.
Assessment: The author has done an excellent job of presenting the narratives in an unbiased way. She addresses many issues that are key to persons with SCI and persons who support them, whether family, friends, care providers, or practitioners.

Doody's Review Service

Reviewer: Diane M. Rowles, MS, ACNP, BC (Rehabilitation Institute of Chicago)
Description: This well-written book addresses the experiences and issues persons with spinal cord injury face by reporting on interviews of 32 individuals. Though those interviewed are from one specific geographical location, the book reveals opportunities, challenges, frustrations, and successes of persons with spinal cord injury (SCI). The book is a nice combination of thoughts and quotes from these interviews and a review of societal views and expectations.
Purpose: The book does a nice job of meeting the author's objectives of describing the experiences of 32 individual with SCI by exploring the physical and social changes experienced after their SCI. It describes how the experiences influence well-being, employment, family and friend networks, and economic well-being. It provides a roadmap of what lies ahead including shared concerns, challenges, struggles, triumphs, and hopes as described by those interviewed. This is a refreshing book that provides thought-provoking quotes and information.
Audience: According to the author, the book provides a roadmap of what lies ahead for those with SCI, their families, friends, and practitioners. It is good for anyone whose life is touched by or has an interest in SCI. It is basic enough to provide information for the beginner and thorough enough to provide information for the expert.
Features: As to be expected, the opinions and responses to questions vary greatly among those interviewed. The author does an excellent job of presenting the complete range of answers to the topics and questions while incorporating information from literature. The topics include social, physical, psychological, economic, and political issues that confront these individuals. The only shortcoming, and it is acknowledged by the author, is the limitation of the interviews to a group in one geographic location, thus potentially limiting the attitudes, experiences, opportunities, and supports. This also potentially limits the ability to generalize the experiences and opinions reported in the book to other persons with SCI.
Assessment: The author has done an excellent job of presenting the narratives in an unbiased way. She addresses many issues that are key to persons with SCI and persons who support them, whether family, friends, care providers, or practitioners. "

Doody Reviews