Overview

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.

Full Product Details

Author:   Ben Mattlin
Publisher:   John F Blair Publisher
Imprint:   Carolina Wren Press
ISBN:  

9781958888520

ISBN 10:   1958888524
Pages:   250
Publication Date:   07 August 2025
Audience:   General/trade ,  General
Format:   Paperback
Publisher's Status:   Forthcoming
Availability:   Not yet available  
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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

Reviews

Praise for Ben Mattlin: “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.”—Leigh Haber, books editor at Oprah magazine “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 McCraken author of Bowlaway and The Hero of This Book

Praise for Ben Mattlin: “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.”—Oprah Daily “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 McCraken author of Bowlaway and The Hero of This Book

Author Information

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.

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