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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.
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Content
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
