Full Description
This insightful and often witty collection of essays charts the making of a reluctant disability activist—including his commentary for NPR, the New York Times and elsewhere.
Ben Mattlin was born in 1962 with spinal muscular atrophy, a congenital and progressive neuromuscular weakness. He never stood or walked but grew up expecting a normal life. In this book of essays, he chronicles that life and also charts his growth as a reluctant disability activist and public intellectual.
Mattlin's disability was from birth. Raised in a family that insisted that he be educated in a mainstream setting, he never thought about his disability as being an obstacle until adulthood. It was not until he had graduated from Harvard and could not find a job that he began to understand what disability rights activists were talking about.
These collected short pieces chronicle Mattlin's intellectual coming-of-age including his beginnings, difficult conversations about disability, the social aspects of being disabled in a nondisabled world, and a wider perspective as the author looks back on his sixty years of disability. The book contains a variety of essays intermixed with a few edited podcast transcripts. Some of the pieces are deeply personal; others are stridently political. All of them are guaranteed to make readers see life and the world in a new way.
Altogether, this collection is a frank, unsentimental examination of some of the most important and moving issues of our day—always rendered with intelligence, sensitivity, and a liberal sprinkling of humor.
Contents
Introduction: This Is Not a Memoir
Part One: Beginnings
Chapter 1: Portrait of the Cripple as a Young Man
The Long and Winding Road: One Alum's Journey
Superheroes and Me
Life On Wheels—An Equal Chance
September's Legacy: Taking On Harvard In A Wheelchair
Chapter 2: Romance—and Its Discontents
How Thirty Blocks Became Thirty Years
A Marriage with Special Circumstances
An Intimate Take on Love in an Interabled Relationship
Valentine's is Coming. Rethink Your Assumptions About the Disabled and Romance
Chapter 3: An Activist is Born
Disability Etiquette: How The Disabled Want To Be Treated
An Act That Enabled Acceptance
Living Beyond Challenges
I Almost Couldn't Help Becoming an Advocate
Part Two: Difficult Conversations
Chapter 4: Nothing Pitiful About It
An Open Letter to Jerry Lewis
No Longer One of "Jerry's Kids"
Why the Return of the Muscular Dystrophy Association Telethon Is Unwelcome
Chapter 5: Publicly Disabled
Miracle Boy Grows Up: Ben Mattlin Speaks to Jay McInerney
Disability Matters
Are There No Wheelchairs in Heaven? (formerly, Valuing Life, Whether Disabled or Not)
Chapter 6: Developing Self-Worth
Spinal Muscular Atrophy Doesn't Define Me
"Cure" Me? No, Thanks
Disability and Disease Aren't Interchangeable
A Disabled Life is a Life Worth Living
Chapter 7: Assisted Suicide
Quality of Life Consists of More Than the Physical
Life, and Death, and Who Decides
Suicide By Choice? Not So Fast
POLST: Protecting Patients' Rights or a Bad Joke?
People with Disabilities Often Fear They're a Burden—That's Why Legal Assisted Suicide Scares Me
Chapter 8: Health-Care Disparities
People Like Me: Is There Room in Health Care for the Disabled?
Inaccessible Doctor's Offices? Sometimes Yes, Sometimes No
To Hell and Back: Disability Wisdom
Disabled People Have Always Been Vulnerable to Disease; Let Us Show You the Ropes
Part Three: Going Social
Chapter 9: Mixed-Up Media
On Halloween, Celebrating Differences of All Types
God Bless Us, Every One—No, Really!
What's So Funny About Having a Disability?
Wheelchair Guys Are All Alike
Why I Will Miss Trevor Noah's "Daily Show"
Chapter 10: Stigma and Reputation
It's Just a Wheelchair, Not a Batmobile
I Am Not Your Supercrip
Disability After Dark
Not All Crips Are Creeps
When Wheelchairs Are Cool
Chapter 11: Ongoing Issues and Irritations
No Straws? No Thanks!
Book Society
Grounded by My Disability
Mastering the "Pee Math"
Marriage Penalties
Why I Hate Buying a New Wheelchair
Help! I Think I Created A Word!
Part Four: A Wider Perspective
Chapter 12: Invisible but Present
Harvard and Its Minorities: Diversity Isn't Just Skin Deep
Naomi Osaka's Withdrawal from the French Open Was a Stand for Disability Rights
I Have a Disability That is Obvious—and One That's Not
I Have A Disability Everyone Can See; My Bipolar Friend Who Died by Suicide Did Not
Mental Illness is a Disability, Not a Public Threat
Meltzer Center for Diversity, Inclusion, and Belonging, at N.Y.U. School of Law
Chapter 13: Portrait of the Cripple as a Middle-Aged Man
Coming to Terms with Survival
A Wheel in Two Worlds
Alive at 55!
Brockton Public Library
Chapter 14: Reflections
Quiet Activism
My 70s Show
My Dad, for All His Faults, Was the Ideal Father for a Kid in a Wheelchair
I Remember Life Before the Americans with Disabilities Act. Now, We Need To Do More.
What I Learned from the Generation of Disabled Activists Who Came After Me
Afterword: Where Are We Going From Here?
Five Agents in 25 Years
Confessions of a Reluctant Spokesperson
The Dignity of Risk
