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.
Arvustused
Ben Mattlin writes with grace and humor about a lifetime of being disabled. These essays form an autobiography of sorts which is by turns instructive and inspiring. Although he may be a reluctant advocate, he is a powerful and eloquent one.Jay McInerney
Ben Mattlin's book does that rare thing: makes you think, makes you wonder, makes you hope, makes you angry, and makes you want to take action in both personal and collective ways. A beautiful and potent contribution to the stories about extraordinary bodies in ordinary time.Emily Rapp Black, New York Times best-selling author of Frida Kahlo and My Left Leg
Ben Mattlin is one of our most clear-thinking and insightful writers on the subjects of disability and societys flawed approach to difference. In this wise and irreverent collection, which spans from memories of high school as a child who didnt entirely fit in, to thoughts about the promise of the Americans with Disabilities Act, to reflections on the dark side of Jerry Lewiss Muscular Dystrophy Labor Day Telethon, he is at his absolute best.Adam Cohen, author of Supreme Inequality: The Supreme Court's Fifty-Year Battle for a More Unjust America
Praise for Ben Mattlin:
Ben possesses a unique talent for sharing the disability experience in an accessible, relatable, and compelling way. His words are powerful and authentic.Shane Burcaw, president of Laughing At My Nightmare and cofounder of Squirmy & Grubs
Disability has long been marginalized in the literature of social justice, but fear not: Ben Mattlins here to shake us from our complacency and unconscious biases. His piquant, witty, intimate storytelling ranges across the spectrum of disability while probing the possibilities of change and the role of advocacy in fraught times. Mattlin binds together his public and private selves with singular savvy and style, a gift to us all.Hamilton Cain, author of This Boy's Faith
As a memoirist and a journalist, Mattlin's brilliant. His work, as it considers both the personal and public lives of people with disabilitiesboth people and disabilities as varied as the world and history itselfis lucid and philosophical and thoughtful. Mattlin understands people, and one of his gifts is to make that understanding legible to his readers. I would read anything he writes.Elizabeth McCracken author of Bowlaway and The Hero of This Book
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 WheelsAn Equal Chance
Septembers Legacy: Taking On Harvard In A Wheelchair
Chapter 2: Romanceand Its Discontents
How Thirty Blocks Became Thirty Years
A Marriage with Special Circumstances
An Intimate Take on Love in an Interabled Relationship
Valentines 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 Couldnt 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 Arent 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 Theyre a BurdenThats Why Legal
Assisted Suicide Scares Me
Chapter 8: Health-Care Disparities
People Like Me: Is There Room in Health Care for the Disabled?
Inaccessible Doctors 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 OneNo, Really!
Whats So Funny About Having a Disability?
Wheelchair Guys Are All Alike
Why I Will Miss Trevor Noahs 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 Osakas Withdrawal from the French Open Was a Stand for Disability
Rights
I Have a Disability That is Obviousand One Thats 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
Ben Mattlin is freelance writer and the author of four books: Unbound: Notes from a Reluctant Disability Activist (2025), Disability Pride: Dispatches from a Post-ADA World (2022), In Sickness and in Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance (2018), and Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity (2012). A Harvard graduate, Mattlin has published essays in the New York Times, the Washington Post, the Los Angeles Times, the Chicago Tribune, and Time, and hes been featured on NPR, "Here & Now," NowThis News, ABC's Prime Time Live, CNN, E! Entertainment Network, and independent radio stations across the U.S., Canada, and the U.K. He lives in Los Angeles with his wife, and they have two grown daughters.
