From the Periphery: Real-Life Stories of Disability

by Pia Justesen, Tom Harkin (Foreword by)

Overview

From the Periphery consists of nearly forty first-person narratives from activists and everyday people who describe what it’s like to be treated differently by society because of their disabilities. Their stories are raw and painful but also surprisingly funny and deeply moving—describing anger, independence, bigotry, solidarity, and love, in the family, at school, and in the workplace. 

Inspired by the oral historians Studs Terkel and Svetlana Alexievich, From the Periphery will become a classic oral history collection that increases the understanding of the lived experiences of people with disabilities, their responses to oppression, and the strategies they use to fight for empowerment. 

Product Details

ISBN-13:	9781641601580
Publisher:	Chicago Review Press, Incorporated
Publication date:	10/01/2019
Pages:	336
Product dimensions:	5.90(w) x 8.90(h) x 0.70(d)

About the Author

Pia Justesen, PhD, is a Danish human rights lawyer, professor, and writer who moved to the United States in 2014. In Chicago she has taught disability rights at the University of Illinois and worked with the independent living organization Access Living. She has an extensive list of publications on human rights and discrimination issues. Her work focuses specifically on the human rights of racial minorities and persons with disabilities. In Denmark she also worked as a corporate social responsibility advisor and a labor union lawyer. Pia has three children and lives with her husband. She currently splits her time between Chicago and Copenhagen. For more information: http://www.piajustesen.com and https://www.facebook.com/storiesfromtheperiphery

Tom Harkin served as US Senator from Iowa from 1985 to 2015. He coauthored the Americans with Disabilities Act of 1990 and was its chief sponsor in the Senate.

Table of Contents

Foreword Senator Tom Harkin xi

Prologue xv

1 I Got Angry 1

I Felt This Rage Marca Bristo 3

I Just Never Could Get Angry Enough Kiel Renee Ken Moses 12

The Best Way to Cope Is by Being Angry Jacky Dorantes 32

I'm Asked to Fight All the Time Julie Schrager 39

2 What I Mean When I Talk About Disability 45

We Are Less James Charlton 48

An Aspect of Human Variation Heather Gabel 54

3 No One Sees Me 61

You're Literally Not Seen Susan Nussbaum 63

I Feel the Discrimination Like the Death by a Thousand Paper Cuts Alissa Chung 68

I Felt Like Deaf People Were Invisible Rachel Arfa 74

4 Embracing Disability 79

I Know People Now Who See Me Timotheus Gordon 81

A Part of the World That We Don't Talk About Matt Perry 86

A Liberation to Become Truly Blind Pam Berman 94

Disability as a Transforming Experience Rene David Luna 99

5 Alone at School 105

You're Still a Person with a Disability at the End of the Day Curtis Harris 107

You Stupid Nigger Chink. Can I Catch What You Have? Andre 112

Don't Let Anybody Sit Alone at Lunch! Jennifer Wheeler 119

You Know Absolutely Nothing About Me Erick Allen 126

6 To Be Loved 131

Shutting People Out Is What I've Done Candace Coleman 133

Nobody Wants Me Man Called J 141

To Consider Me, Even Though I Couldn't See Sharon 147

I Felt for a Very Long Time 1 Was a Monster Rahnee Patrick 152

7 There's So Much Dignity in Work 157

Society Cannot Get Over the Fact That I Have a Disability! Susan Aarup 159

I Don't Believe in Giving Up Allen West 164

Somebody's Gonna Take One Look at My White Cane: Anonymous Woman 169

I Just Want Justice Mary Rosenberg 174

8 Out in Public 181

I Wouldn't Tell Anyone Fred Friedman 183

It's Almost Like I'm Guilty Until Proven Innocent Judy 190

You Don't Have Dwarf Phobia. You're Just a Bigot! Gary Arnold 195

9 Independence 203

Just Like a Person Michael Grice 206

I Want to Spread My Wings Too Michelle Garcia 210

But We Do Not Like Pity! Edwin Luisa Alfredo Alberto Jose Michelle 219

10 I Am Not Inspiring 223

I'm Going to Give Them a Show Amber Smock 225

I'm Just a Regular Person Doing Regular Things Keianna Parker 231

His Existence Is Not Inspirational Aaron Birdy Holzmueller 237

11 If Nobody Thinks I'm Worthy, Maybe I'm Not 245

You're Not Important Enough Mike Ervin 247

I'm Free from That Now Kathiana 253

Epilogue 263

Acknowledgments 269

Index 271

Editorial Reviews

"This is a necessary book, and as uplifiting as it is heartbreaking. These voices have gone unheard for a long enough. May these stories of courageous American be read far and wide." —Peter Orner, author of Am I Alone Here?, a finalist for the National Book Critic Circle Award


"At a time when people with disabilities face huge barriers to health care, the highest incarceration rates, and the most violence in schools, Justesen's book is a valuable tool for advocates, teachers, doctors—everyone seeking a broader understanding of people in our society who have faced and fought marginalization and discrimination. Justesen gives us a broad range of intense stories, with voices of people who live with every type of disability and who come from diverse cultures and ethnicities." —Susan Mizner, disability counsel for ACLU


"In unfiltered and unvarnished stories, disabled people and parents honestly discuss their personal experiences as they move forward in life. Disabled people and nondisabled people will learn not only about the pain people experience but also what they are doing to empower themselves and others." —Judith E. Heumann, international disability rights advocate


“A mind-expanding collection of important stories.” —Kirkus Reviews


"A perfect primer for anyone interested in disability studies, oral histories, and getting to know the disabled community in a more personal way." —Library Journal


"These first-person narratives are eye-opening, honest, and compelling."—Booklist

From the Publisher

2019-06-25
An eye-opening collection of stories "about discrimination against individual people with disabilities and about exclusion of the group."

Justesen settled in Chicago in 2014 after a career in Denmark as a human rights lawyer advocating for physically and mentally disabled men and women. Almost all the case studies here derive from oral histories she compiled in Chicago, inspired in part by the work of Studs Terkel. As the author shows, disabilities stretch far beyond those that are visible, such as blindness or the use of a wheelchair. Many of the disabilities of those she profiles may not be immediately apparent or constitute a condition generally outside widespread societal consciousness—e.g., deafness, autism, diabetes, dwarfism, severe arthritis, cerebral palsy, muscular dystrophy, depression, and more. For Justesen, negative treatment of individuals with disabilities constitutes a human rights violation. Throughout the text, she amplifies the repeated pleas of her interviewees: Please don't treat me as a person to be pitied or as someone who cannot perform a high-level job; please don't tease me or bully me, and please don't pretend I am invisible when you encounter me. The book suggests that people of color who are disabled are often treated worse than white men and women. Justesen wisely includes oral histories of her subject's paid caretakers as well as family members. As she clearly shows, poor treatment of the disabled yields negative ripple effects throughout society. The author opens the collection by illuminating the anger displayed by those who feel that they are considered "less than." In the next section, Justesen explains the reality of disability entering the realm of "social construct," akin to discrimination based on skin color or gender orientation. "Disability is not miserable," she writes. "But not being regarded, not being respected, being seen as less than, not being treated with dignity, all this is miserable. Barriers in the world can make living with a disability miserable."

A mind-expanding collection of important stories.

Kirkus Reviews