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.
Table of 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
About the Author :
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 he's 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.
Review :
“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 society’s flawed approach to difference. In this wise and irreverent collection, which spans from memories of high school as a child who didn’t entirely fit in, to thoughts about the promise of the Americans with Disabilities Act, to reflections on the dark side of Jerry Lewis’s 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 Mattlin’s 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 disabilities—both people and disabilities as varied as the world and history itself—is 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
