Too Late to Die Young: Nearly True Tales from a Life

by Harriet McBryde Johnson

Harriet McBryde Johnson's witty and highly unconventional memoir opens with a lyrical meditation on death and ends with a bold and unsentimental sermon on pleasure. Born with a congenital neuromuscular disease, Johnson has never been able to walk, dress, or bathe without assistance. With assistance, she passionately celebrates her life's richness and pleasures and pursues a formidable career as an attorney and activist. Whether rolling on the streets of Havana, on the floor of the Democratic National Convention in Chicago, or in an auditorium at Princeton debating philosopher Peter Singer, Harriet McBryde Johnson defies every preconception about people with disabilities, and shows how a life, be it long or short, is a treasure of infinite value.

Genres: Disability, Memoir, Nonfiction, Disability Studies, Biography Memoir, Essays, Social Justice

272 pages, Paperback

First published January 1, 2005

About the author

Harriet McBryde Johnson was an American author, attorney, and disability rights activist. She was disabled due to a neuromuscular disease and used a motorized wheelchair.

Johnson, who was born in eastern North Carolina, lived most of her life in Charleston, South Carolina.

In 2002, Harriet Johnson debated Peter Singer, challenging his belief that parents ought to be able to euthanize their disabled children. "Unspeakable Conversations," Johnson's account of her encounters with Singer and the pro-euthanasia movement, was published in the New York Times Magazine in 2003.

She wrote Too Late to Die Young in 2005 and Accidents of Nature in 2006.

During her career as an attorney she specialized in helping people who couldn't work get Social Security benefits. She was also chairwoman of the Charleston County Democratic Party. She once described herself as a "disabled, liberal, atheistic Democrat". She expressed support for Congress during the Terri Schiavo case.

In 1990 she drew national attention for her opposition to the annual Jerry Lewis Muscular Dystrophy Telethon. Lewis told the Chicago Tribune he had no intention of making peace with opponents such as Johnson. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq. Johnson described the telethon as "the charity mentality" and decried its "pity-based tactics".

In 2003 Johnson was named Person of the Year by New Mobility.

Johnson died at home on June 4, 2008.

Reviews

[Erin · Rating 4 out of 5]

I didn't enjoy this as much as Accidents of Nature. I wasn't that interested in the court proceedings or her run for office; those two stories were, for me, the weakest. Also, her musings about Cuba were bothersome, because she assumes Che Guevara was painted as evil by the US, and wasn't actually a bad guy. Also, she assumes that the economic troubles on the island stem from the US embargo; while that does contribute, the real issue is Castro and his "revolutionary" regime that Johnson almost seemed to admire.

Additionally, she has issues with race and her descriptions/comparisons/stereotypes of people of color. She even compares disabled people to people of color, separating the two oppressions while simultaneously drawing comparisons, all the while ignoring the fact that many disabled people ARE people of color. I got a sense that, while she briefly acknowledges her privilege as white and upper-class, she uses her privilege in her favor and to purposely oppress others with it.

I gave this book four stars because it's still really relevant and important for the disability movement. All of her thoughts/experiences/fears/loves as a disabled woman are spot on. She is inspiring in that sense - she makes me want to write about my own life and reintroduce myself to the radical disability community. Johnson even states that the simple act of living and enjoying our lives is revolutionary, and I couldn't agree more.

[Spider the Doof Warrior · Rating 5 out of 5]

This was a wonderful book. I showed that disability doesn't have to be tragic, doesn't have to mean suffering. Harriet McBryde Johnson lived her life to the fullest. She protested against injustice. She was a lawyer. She didn't pine and wine and bemoan.

Everyone should read this book.

[Sandy · Rating 5 out of 5]

I loved this! Witty, quick, and firmly grounded in disability justice.

[Kathleen O'Neal · Rating 5 out of 5]

I read this book after having previously read a number of Harriet McBryde Johnson's pieces in various publications. I knew it would be wonderful and it definitely lived up to my expectations. In "Too Late to Die Young: Nearly True Tales From a Life," Johnson's meditations on Southern culture, disability, activism, politics, law, narcotics, Cuban culture, philosophy, independence, dependence, and a variety of other topics are funny, perceptive, and extremely real. The book speaks to the soul of the disability rights movement and everything beautiful about disability culture and the disability rights movement's vision of a world in which individuals with a variety of impairments are empowered to live their best lives and are accepted for who they are on their own terms. I don't have one favorite moment of this book - I have many. As a Southern woman, I found Johnson's understanding of Southern culture to be deeply perceptive. As a chronic kidney stone former, I found her description of her experiences with narcotic pain medications to be amazingly descriptive of the reality of being on such drugs while one is dealing with serious physical pain. Her description of coming off of them while in the throws of physical discomfort and anxiety about her future due to an accidental fall to be very apt as well. Johnson's description of Cuban culture allowed me to think of Cuban society in an entirely new light. The chapter in which Johnson takes on a legal case to help a client allegedly fired due to needing back surgery allows Johnson to write a stirring meditation on the ways in which people with invisible disabilities are all too often not taken seriously by our legal and social systems.

Johnson puts a human face on the many important advances for disabled people that the disability rights movement has secured in America and helps us to understand better why they are so important. Her outrage at the injustice of disabled people locked away in nursing homes, which she refers to as "the disability gulag" and the ways in which she ties their experiences to her own fears of what could be were she not so privileged helps the reader to understand why this is such a compelling issue. Finally, Johnson's narrative provides an almost living, breathing refutation of the idea that dependence on others necessitates a necessary loss of autonomy.

This beautifully written, smart, funny book was a joy to read and I would recommend it to anyone.

[katymoo · Rating 3 out of 5]

Harriet McBryde Johnson is truly an amazing woman who never let her disability stop her from anything. My sister gave me this book, and it gave me a very different perspective of disabilities; it is a book that definitely gets you thinking about how we see the world and what our expectations might be. To me there is nothing better than thinking - or seeing - outside of the box.

I did find her larger than life and somewhat aggressive approach to everything a bit tedious to read sometimes. She really owned her activist life! But you have to appreciate what and who she is, and the huge contributions and impact she has had.

The book made me want MORE and so I Googled her... and I was very sad to find that she died in June 2008.

[Stefanni Lynch · Rating 4 out of 5]

This brilliant and difficult Southern lawyer opens up the experience of people with disabilities. She made me rethink many beliefs I had, and helped me see that life’s pleasures are real for everyone. It is always a good thing to see someone else’s point of view. I watched Jerry Lewis MDA telethons for years and believed them to be a good thing, but Harriet Johnson helped me look at it differently. One good lesson taken from this memoir is to not assume how anyone feels about their life. Listen to them when they tell you, and believe them.

[EB · Rating 4 out of 5]

I like her attitude (overall friendly, humor-filled, and positive) and reading her observations and quips about disability. It's helpful for me to hear her describe navigating difficult situations - what internal resources (coping strategies) does she use? What external resources does she tap into? Also helpful to read her fairly bouyant attitude toward difficulties - she definitely *acknowledges* that things are hard (no denial) but she doesn't *focus* on the hardships - at least, not to the exclusion of pleasures and joys.

She also does a fantastic job of not only articulating/naming the ways disability is constructed and acted upon in our society/culture, but then making arguments about why those constructions are faulty / incomplete / inhumane. I admire her incisive argumentative capacity SO MUCH. The logic - the argument - is usually where I break down and start crying. It gets too emotional for me. I appreciate having these liferafts to hold me afloat and show me the way to use my rational brain to pick apart situations that rob me of my humanity.

Admittedly, some of the topics themselves don't interest me much. For example, there are two back-to-back chapters about 1990s Democrat politics. (In the first one she describes her run for county council; in the second she's a DNC delegate to the national convention in Chicago.) I also didn't care much for the chapter where she described assisting with the disability case that went to trial with a jury.

The chapters after those were more engaging. I enjoyed ('enjoy' is definitely the wrong word...) reading about her hospital adventure after falling out of her wheelchair while out west. It was good to read about her making difficult decisions / weighing her options the same way I have to do when it comes to seeking and implementing medical care... And advocating for myself. I liked revisiting the story of her debate with Peter Singer. I already returned "Disability Visibility" to the library (both eBook and paper copies) so I couldn't compare the essays, but I think this one was slightly different - maybe longer?

One thing I'm reflecting on as I'm reading these disability memoirs and essays is the way in which having a definite, known, undeniable diagnosis is in many ways a different experience of disability than having a mystery illness (i.e., being a WOMI). There are tradeoffs both ways. E.g., I can pass as able-bodied! That's helpful in some contexts and a drawback in others. There's still a LOT of gaslighting (medical and otherwise), inconvenience, etc. - but idk - just KNOWING, for myself - like being able to LOOK at my body and say, "Yup, I'm not making this up" - that was 38 years coming for me.

Quotes I loved:

#### Preface ####

* Because the world sets people with conspicuous disabilities apart as different, we become objects of fascination, curiosity, and analysis. We are read as avatars of misfortune and misery, stock figures in melodramas about courage and determination. The world wants our lives to fit into a few rigid narrative templates: how I conquered disability (and others can conquer their Bad Things!), how I adjusted to disability (and a positive attitude can move mountains!), how disability made me wise (you can only marvel and hope it never happens to you!), how disability brought me to Jesus (but redemption is waiting for you if only you pray).
* For me, living a real life has meant resisting those formulaic narratives. Instead of letting the world turn me into a disability object, I have insisted on being a subject in the grammatical sense: not the passive “me” who is acted upon, but the active “I” who does things. (2)

Like all stories, they are most fundamentally a chance to ride around inside another head and be reminded that being who we are and where we are, and doing what we’re doing, is not the only possibility. (4)

#### Ch1 - Too Late to Die Young ####

* By setting me apart as a death totem, they can avoid looking in their own basements where their own coffins wait.
* I know I am as alive as any of them, and they are as mortal as I. I am set apart not by any basic realities, but by perceptions— theirs and mine. They insist on dividing the world between the living and dying; I insist on both at the same time. Why not? (11)

Death is natural, but not just. It is a random force of nature; survival is equally accidental. (16)

#### Ch2 - Hail to the Chief! ####

Normally, I call him the Asshole in Chief. That elicits outrage, and then I act contrite: “You’re right, that was disrespectful—to a perfectly serviceable body part.” (18)

In truth, individual personalities don’t matter; take one out, and another takes his place; violence invites more violence and a higher level of repression; real change means broad-based social transformation through nonviolent collective action. We know all that. We’re only fooling around. (27)

There’s also salty, greasy party food. But it’s poster board and markers that make a party an event. (36, emphasis mine)

#### Ch3 - Honk If You Hate Telethons ####

Protesting is contrary to the teachings of Charleston’s civil religion, politeness. Our mothers teach us it’s not polite to criticize. Protesting falls clearly within that general rule and criticizing charity is a particularly heinous infraction. If you’re a beneficiary, it smacks of mean ingratitude. If not, it’s sour grapes. It’s so much politer—so much easier—to smile indulgently and say, “They mean well.” Its easy because, in fact, they usually do mean well. (49)

They all assumed the only answers were prevention and cure. (50)

The problem isn’t disability but discrimination and prejudices and myths and fears. (52, emphasis mine)

Don’t they hear the bigotry? No, they don’t. When bigotry is the dominant view, it sounds like self-evident truth. (54)

How can he oppose the telethon when he suffers from one of the diseases the telethon targets? “First of all, I don’t suffer,” he says. Bingo. The ableist language, the assumption that having a disability inherently means suffering, is so pervasive I didn’t even notice it. (73)

...living in a world that insists that people like us are suffering and that lives like James’s and Ronnie’s and Mike’s friend who died on the couch were less because they were short. (74)

#### Ch5 - Unconventional Acts ####

“Christopher Reeve is going through a tremendous transformation. It’s impossible for most people to imagine, but it happens to thousands of people every year. It doesn’t make him a disability spokesman. He’s still learning. He wants to be cured, but for us it’s more important to live our lives, the way we are. He doesn’t speak for us.” (122)

#### Ch6 - Trial and Error ####

Discrimination can mean treating people as different when theyre not; it also means ignoring differences that need accommodation. (135)

If she’s lying, I think, she has an awful lot of nerve. But if she’s honest, she has even more. It must be hard to sit in that box and tell your story knowing you’ll be called a liar. It takes a kind of bravery to submit to judgment and ask twelve people you’ve never met to take you at your word. (137, emphasis mine)

The ADAs purpose is to make employers do what’s reasonable to enable a person to work. (141)

There’s no dramatic Aha! or Gotcha! moment. The facts are in dispute. That’s why we need a jury to tell us which version is more likely to be true. (143)

The law we’re suing under nowhere uses the word disabled. It’s the Americans with Disabilities Act. It’s about protecting Americans—people— from disability discrimination. Not just nondisabled people. Not just disabled people. Many people—regular working people—have disabilities but don’t become disabled so long as their disabilities are accommodated. (148)

#### Ch7 - Believing in Dreams ####

Maybe these Cubans have managed to learn what the disability rights movement tries to teach— that it’s all one struggle and we are in it together. (167)

#### Ch8 - Getting Thrown ####

For all, “placement” is determined not by our needs, not by our desires, but by what the government will pay for. (179)

But here in the medical system, this body is no longer my responsibility to care for or neglect by giving directions to others’ hands. Here, my body doesn’t get what I want unless the medical people get what they want. I submit. (187)

#### Ch9 - Unspeakable Conversations ####

It’s partly that both biological and adoptive parents prefer healthy babies. But I have trouble with basing life-and-death decisions on market considerations when the market is structured by prejudice. (207)

What’s the difference? Preferences based on race are unreasonable. Preferences based on ability are not. Why? To Singer, it’s pretty simple: disability makes a person “worse off.” Are we “worse off”? I don’t think so. Not in any meaningful sense. (207)

We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs. (208)

Singer’s views are so far beyond the pale that we should not legitimate them with a forum. We should not make our own lives subject to debate. (208, emphasis mine)

I keep forgetting that even people who know me well don’t know much about my world. (212)

Normally Aaron’s big-city world seems far away from my life in a place that tourists call quaint. Here at Princeton University, Aaron seems like an old friend from my hometown: a place called Reality. (218)

Singer is easy to talk to, very good company. Such a pity that he regards lives like mine as avoidable mistakes. (219)

Psychology professor Carol Gill says it’s disability discrimination to try to prevent most suicides while facilitating the suicides of ill and disabled people. . . . The case for assisted suicide rests on stereotypes that our lives are inherently so bad that it’s entirely rational if we want to die. (220)

We shouldn’t offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life. Common causes of suicidality—dependence, institutional confinement, being a burden—are entirely curable. (220)

I help get a bill passed that might move us one small step toward a world in which killing won’t be such an appealing solution to the “problem” of disability. (224)

Laura Hershey: "I wonder if your Southern politeness has dulled your righteous anger." (224)

The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist. My fight has been for accommodation, the world to me, and me to the world. As a disability-pariah, I have had to struggle for a place, for kinship, for community, for connection. I am still seeking acceptance of my humanity. (228)

#### Ch11 - Good Morning--An Ending ####

The widespread assumption that disability means suffering feeds a fear of difference and a social order that doesn’t know what to do with us if it can’t make us fit its idea of normal. When we seek what we need to live good lives as we are, we come against that wall. Why bother? the thinking runs; all they can do is suffer. When nondisabled people start learning about disability, what seems most startling, most difficult to accept, is the possibility of pleasure. (253)

We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures. (253)

Throughout my life, the nondisabled world has told me my pleasures must be only mental, never physical. Thinking to help me, it has said my body is unimportant. I respectfully disagree. For me, the body—imperfect, impermanent, falling apart—is all there is. Through this body that needs the help of hands and machines to move, that is wired to sense and perceive, comes all pleasure, all life. My brain is only one among many body parts, all of which work through one another and cooperate as best they can. (255)

The nondisabled world tells disabled people generally that our lot is unavoidably tragic, and if we’re smiling, we’re smiling through tears and despite suffering. In the face of these powerful social forces, I believe that living our strange and different lives, however we choose and manage to live them, is a contribution to the struggle. Living our lives openly and without shame is a revolutionary act. (255)

In truth, there’s no story. What they call love stories are actually about conflicts. A story needs some series of obstacles leading to some crisis. (257)

At dawn, it’s usually impossible to predict whether the day will bring strange events fit for narration or the routine lyricism of life and love. Either way, it’s good to meet each morning’s sun awakened to all the possibilities. (258)

[Judith · Rating 5 out of 5]

This sat on my shelf for over three years! I am sorry that I did not pick it up to read sooner, so it could have found more readers.

The title is great. I wish I'd thought of it. It is also perfect for this particular group of stories.

Johnson subtitles the book "nearly true tales from a life". The tales are about her life, from early childhood into middle age, as a person with a neuro-muscular disease. She did not want to know specifically which disease, and it didn't matter anyway. The stories begin with her realization that she would some day die. And that whatever disability she had would likely figure into that death. She came to grips with the realization early and got on with it. Saying to herself such things as "As long as I'm going to die I might as well be in Kindergarten"...on up to "...I might as well have a law degree" and "I might as well be a lawyer". She spent no time on self-pity.

The stories are arranged chronologically so the book really reads as a memoir. The underlying theme is that people with disabilities are no less likely to be happy or to live full lives than are able-bodied persons. It seems like a no-brainer but to much of the world it is not. Taking the message further, Johnson fought for accommodation for persons with disabilities so that it would not be so unnecessarily difficult for them to get all they can from life.

The tales are told with a brand of humor that is easy to like, that seems to come naturally to her. The book is thus easy and fun to read, yet it packs a powerful punch.

[Libby · Rating 4 out of 5]

Johnson, who was born with a neurological disease, learned from early life that she was not expected to have a long life, hence the title. (She died at the age of 50.) She was an attorney in Charleston, SC, and she recounts running for City Council, attending the Democratic Convention as a delegate, visiting Cuba and debating Peter Singer, a philosopher who argues that parents should have the right to euthanize disabled infants. Above all, she was a disability rights activist who, among other actions, picketed Jerry Lewis because of his pitying and condescending attitudes about those who have Muscular Dystrophy.

Anyone who is not aware of the issues of disability discrimination will learn much while being entertained by this natural-born storyteller, who loved spinning mostly true tales.

[Kathryn Owen · Rating 5 out of 5]

So far, this book is wonderful. My best friend from childhood has cerebral palsy, and experienced the stigmatized and ignorant responses the world has towards those with disabilities, and so I was able to experience them second hand with her. Even the proximity with which I saw it didn't leave me with the understanding that this book has already begun to impart on me. I am not disabled, but I do have a body, and a mind capable of learning from and respecting those with bodies and minds that are different from my own. I just hope that my mind continues to expand with the help of intelligent and straight-forward people like Harriet McBryde Johnson. Not to mention, she's an awesome story teller.

[Catherine · Rating 3 out of 5]

I read this book because it was recommended by a member of my book club. The author, who is a lawyer and activist from Charleston, SC, has muscular dystrophy and is confined to a wheelchair. The message I took away from her stories was that even if you're physically disabled, you can still have a full appreciation of life physically and mentally. I found her aggressive personality, however, a bit trying by the end of the book. But the author admits to her ways when she writes about asking her father if she's difficult. He responds, "You're easy to deal with, as long as you get exactly what you want and no one gives you any sh." Her dad said it best!

[Eliza Fern · Rating 5 out of 5]

One of my favorite books ever.

McBryde Johnson's humor, Southern charm, wit, and thoughtfulness come through in every page and every sentence as she tells selected tales from her life as a lawyer, a Southern Belle, a woman, and a person with a disability. I could almost instantly relate to her despite not sharing very much of her background. This book reminded me of the kind of person I hope to be and the kind of person who I am glad to have had shape even just a little corner of this world.

[Bailey Sinclair]

I thought that this book was very inspirational. Harriet McBryde Johnson is a woman that tells her life story about how she has Muscular Dystrophy. She talk about how she knows she is going to die but has come to except it. Se over comes so many challenges in her life. She goes on in and say if she is going to die she might as we lawyer. She accomplishes all theses things in life while being in a wheel chair it really is remarkable. In my opinion this book a great read and I would recommend it to everyone.

[Janine · Rating 4 out of 5]

I'd give this 4 1/2 stars if I could. Harriet McBryde Johnson can tell a story! She uses anecdotes from her own life to bring reality and perspective to her cause, disability rights. I found the author to be articulate and able to state her opinions convincingly, while sounding like she's sitting across the table relating what happened to her yesterday. I'd recommend this to anyone with an interest in the subject of disability rights.

[Ann · Rating 5 out of 5]

Johnson, lawyer, "crip," wheel chair-bound, and a great voice in literature. A hoot, in part b/c Johnson was a political animal during the Clinton years and didn't support (at least initially) Clinton. Love the tales from this Southern lawyer about her sparring with Pete Singer, the philosopher who would have people like her killed shortly after birth. I wish Harriet had lived longer to giver us more insights into disability and the ADA.

[Jonah · Rating 5 out of 5]

I know inspiring isn't the word she'd like best and yet she inspired me. There's not much else to say. She was the person whose perseverence I drew on most when I was diagnosed with a life threatening chronic illness- seeing the MDA telethon on TV while I was in the hospital a few days after I was diagnosed, I remembered her strength and it gave me the strength. I cried when she died.

[Sue Kozlowski · Rating 3 out of 5]

Non-fiction. Harriet is 40 years old and lives in Charleston, South Carolina. She is a lawyer and she has a life-long, degenerative muscular disease. She is in a wheel chair and cannot bathe by herself. She is against Jerry Lewis and his telethon. Is for the ADA. She defends the value of lives like hers.

[Grey · Rating 4 out of 5]

Harriet McBryde Johnson is amazing. But not in a sappy "inspirational" way. She has incredible tenacity in standing up to people in power, regardless of how unpopular it might be.

This book is an excellent collection of stories from Johnson's incredible life.

[Rachel · Rating 4 out of 5]

This book was a well-written look into some of the life experiences of the author, as a disabled activist and lawyer. There were moments of humor and moments of frustration, and a few moments of utter randomness. Overall, I'm glad I read it.

[Ellen · Rating 4 out of 5]

One amazing woman, who, despite her own profound disabilities, used her wits and energy to fight for the rights of handicapped people. I can never view the Jerry Lewis telethon the same way again.

[Jana Bouc · Rating 5 out of 5]

Memoirs of a happy, powerful, social justice/disability rights lawyer who was born with a neuromuscular disease that prevented her from ever walking or dressing herself.

[Ann · Rating 4 out of 5]

everyone should read this book.

[Frank Taranto · Rating 3 out of 5]

Wonderful book full of tales from the life of a remakable woman. Miss Johnson is handicapped due to a muscular disease, but lives her life to the fullest.

[Vivian · Rating 5 out of 5]

A unique voice. Harriet passed away in 2008 and I'm sorry to not have had a chance to read other writings of hers.

[Krista · Rating 5 out of 5]

One of the best books I've read in years.

[Cathy · Rating 4 out of 5]

She's a great storyteller! If you want an engaging read of autobiographical essays as a way to learn about/encapsulate disability theory/movements, this is the book for you.

[Mindy · Rating 2 out of 5]

If you have an interest in disabilities, read this book. otherwise, you can skip it.

[Christy]

love this one.

[Robin · Rating 5 out of 5]

Excellent book. Interesting and well written with humor and insight.

[Lisa · Rating 3 out of 5]

She's charming and smart.