I was sure that legalizing aid in dying was the right thing to do. Then I met Bad Cripple

Trading the rights of some--the dying--for others--the disabled--didn’t make sense to me. I had a lot to learn

Published February 14, 2016 1:00PM (EST)

 (<a href='http://www.shutterstock.com/gallery-91282p1.html'>Pressmaster</a> via <a href='http://www.shutterstock.com/'>Shutterstock</a>)
(Pressmaster via Shutterstock)

Excerpted from "The Good Death: An Exploration of Dying in America"

The first thing you notice about Bill is that he’s in a wheelchair, much as the first thing you’d notice about a tall person is that he’s tall. With a tall person, though, you accept it; he’s tall, and that’s how it is. With Bill and his chair, you immediately have questions. Why is he in the chair? What happened? It’s a fancy chair, expensive, sleek, and outfitted with small, fast wheels and a thick cushion, as if it’s made for racing, for speed and a long haul. It’s not a part-time chair; it’s not a temporary ride. When you meet Bill, you immediately know that he’s been in this chair for a long time, that it’s part of him. He moves in it like it’s an extension of his limbs; he’s graceful, he doesn’t think about the metal and fabric and rubber. He inhabits it and interacts with it with familiarity and dexterity, like an adult eating with a spoon or a carpenter using a wood plane. But that doesn’t mean that he’s not aware of the chair. He’s incredibly self-aware; and he’s constantly reading his surroundings and the reaction of others to him. He knows how you feel about him and his chair before you do. When moving around a restaurant or a park or the city streets with Bill, you notice that his spatial and emotional understanding of his environment is like a sixth sense, a heightened attention. In some way, it’s like he’s on guard.

I know Bill because we had a fight that neither of us wanted to let go of. In the early spring of 2010, I was spending a lot of time thinking out loud on my blog about end-of-life issues, particularly about the movement to legalize aid in dying and its “pro-life” opponents. I had just started editing the Revealer, a publication at the Center for Religion and Media at New York University that focuses on how the media discusses religion. It was the intersection of religion and health care, particularly around the issue of aid in dying, that consumed me. I was closely watching the language and media coverage created by “pro-life” groups like the Terri Schiavo Life & Hope Network. I’d posted an excerpt from an article by Douglas Todd at the Vancouver Sun: “In this increasingly bitter debate, disabled activists claim legalizing assisted suicide would be an ethical ‘slippery slope’ that would lead to all disabled people, no matter the degree of their impairment, being devalued as human beings.” The use of slippery slope, here in quotes, interested me. It’s a “logic device” that is often debunked because it posits that one action—in this case, the legalization of aid in dying— will lead to another, like the euthanasia of others. I had also noticed that Bobby Schindler was billing himself as a “disability rights” activist, using the slippery slope argument to show that the “threat” to one minority group automatically meant a threat to all. Some religious and disability opponents were using similar language. I was not ready to write about the controversy surrounding some disabled groups’ opposition to aid in dying—there are also disabled groups that support legalization— because I didn’t understand it, I hadn’t thought it out yet, and I hadn’t read enough. I was afraid of making assumptions. I was certain that I didn’t need to be disabled to support the rights of the disabled. But I knew that I didn’t have a grasp of why some disabled groups so strongly opposed aid in dying. I wrote as much quite clearly.

Then, up popped Bad Cripple. On his blog, he called my writing “infuriating.” “In my opinion Neumann states many interesting things but always [seems] to take a wrong turn in her analyses. She acknowledges the rights of disabled people and supports their efforts to gain equality. Yet when it comes to opposition to assisted suicide, as an advocate, she takes disability rights activists to task.” The reductive summary pissed me off. I wasn’t taking disability rights activists to task; of course I supported efforts to gain equality. I was simply saying that I couldn’t see how legalizing aid in dying countered or curtailed the rights of the disabled. Trading the rights of some, like the dying, for others, like the disabled, didn’t make sense to me. Legal aid in dying was for terminal patients, those with six months or less to live. A paraplegic person wasn’t terminal; he was paraplegic.

Bad Cripple said I didn’t understand the threat to the disabled because I wasn’t disabled. Because I didn’t have any skin in the game, I couldn’t comment on it (or rather, couldn’t counter his view). Yet I was expected to take his word for it, to intuitively get the connection. I wrote, “I sympathize with the fear and vulnerability the disabled community feels toward the medical industry, the state, and society. But conflating two separate issues is just bad advocacy. With a little (understandable) paranoia thrown in.” I understood what Bad Cripple was saying about the injustice of a world that didn’t recognize “abnormal” bodies, that failed to extend equal rights and all kinds of services to the disabled community. But to be eligible for aid in dying, one not only had to be terminal—a medical diagnosis—but had to initiate a conversation with her doctor, had to ask for lethal drugs herself. I shook my fist for patient autonomy! Every patient, disabled or terminal or whatever. No one but individual patients should make their medical decisions. A doctor’s job was to inform patients of all their choices. The job of each of us was to make those decisions, with the help of as much knowledge as possible. How would someone who wasn’t dying, who didn’t want to end his life, feel threatened by a law that didn’t apply to them? Bad Cripple wrote:

I doubt Neumann goes through the same mental gymnastics or experience[s] the fear people with a disability do when they go to the doctor’s office or hospital. Perhaps Neumann can appreciate the difference between the terminally ill and disabled but I assure you most people, doctors included, do not. How else do I explain comments made to me such as “I would rather be dead than use a wheelchair” or “Are you sure you wish to receive medical treatment” or “How long have you suffered paralysis?” A clear message is being sent and it is not positive. Indeed, it is deadly and with the right spin can be lethal in some circumstances. My existence is open to question, my life less valuable. This is not paranoia but rather a social fact. Somehow I doubt anyone has openly questioned the value of Nuemann’s [sic] existence or asked her if she really wished to receive medical treatment. Frankly I do not want Nuemann’s [sic] sympathy or anyone else’s for that matter. What I want is support; support for my civil rights.

For three long, obsessing days, Bad Cripple, readers of his blog (most with disabilities), and I scrapped it out on his website. Jen, the last commenter, ended with this advice to me: “I’d encourage you to seek out that degree of awareness through whatever means works for you—reading memoirs by people with disabilities, talking to disabled people, critically considering your own internalized beliefs about disability. . . . Otherwise you risk sounding like you are saying what you believe is necessary to gain our support without quite getting it.” Then, bing, I got an e-mail from Bill Peace, aka Bad Cripple. “If you would ever like to have lunch it would be a pleasure to meet.”

* * *

The scene opens darkly, with a close-up of corpses in the back of a wooden wagon. Mud, muck, and groans. Clang. “Bring out your dead.” The sick cough and scurry around when they hear it. Clang. “Bring out your dead.” They try to hide in baskets, anywhere, out of the sight of the body collector. A man approaches the cart with a body thrown over his shoulder. “Here’s one,” he says.

“I’m not dead,” says the old man/body.

“What?” says the body collector.

“Nothing,” says the man.

“He says he’s not dead,” says the body collector. The three continue their banter. Finally, the man asks if the body collector can do anything. He pauses, then turns and hits the old man over the head—clunk—and throws him onto the cart. On top of the other bodies.

The scene is from the 1975 movie Monty Python and the Holy Grail. It’s called the “Not Dead Yet” scene. And it’s funny, hilariously so. Not just because it’s so dark, because the near-dead are scurrying around in the mud to avoid being hauled away, from having their last miserable but living moments curtailed, but because the able, the healthy, are trying to unload them. To off-load them onto a wagon, onto the cold bureaucracy of the state. It’s against regulations. Here’s your nine pence. We laugh because the profound and dignified struggle to survive is disrupted, is discredited by convenience and the business of order: the obligations of the state to collect what is no longer useful; the (practical) cold-heartedness of the man who is trying to dispose of his old man (his father, grandfather, neighbor?) and is willing to prematurely part with nine pence for the service. There’s a plague going on; there are other mouths to feed. Why wait for the body collector’s next round when, well, he’s here right now?

“The definitive characteristic of human dignity (reason) must always be employed to maintain and preserve it; and thus, the incalculable value of such dignity remains in service of a certain economy, of the production and conservation of itself,” writes Scott Cutler Shershow in Deconstructing Dignity: A Critique of the Right-to-Die Movement. The old man tries to prove that he is still alive. He tries to reason with the body collector, with his carrier—he’s not dead, he’s getting better, he wants to go for a walk, he’s happy—by proclaiming his physical and emotional abilities. His dignity. Dignity makes dignity. That’s its job. “Laughter and comedy, by contrast, are opponents of dignity, and prime instances of the kind of thing that reason must keep in check,” Shershow writes. We laugh because what should be the most humane, the most important task for the body collector, for the old man’s son, for all of us, is preserving the old man’s dignity. They (we) are obligated to care for him. All the old man wants to do is laugh, go for a walk, to do the things that the living do; he makes the case for more time. Yet, it’s time that curtails his dignity. The body collector has to keep going; he has a job to do; the man whose shoulder he’s thrown over needs to get on with his own life.

In the spring of 1996, Diane Coleman, who, because of neuromuscular disabilities has been in a wheelchair since the age of eleven, founded Not Dead Yet, a “national disability rights group,” according to the website’s “about” page, that’s devoted to “disability rights opposition to legalization of assisted suicide and euthanasia.” Coleman took the group’s name from the scene in Monty Python and the Holy Grail. “Not Dead Yet: The Resistance” reads the heading of the group’s website. Not Dead Yet is written in a sinister black script; long, pointed daggers protrude from the N, Y, and Ts. The O in Not is the symbol for a person in a wheelchair. What the group members are resisting is a premature clunk on the head. They’re resisting being thrown onto the body cart before it’s time. They’re protesting for more time, proclaiming their dignity. And their definition of disabled is very broad.

Every one of us will be disabled at some point in our lives, Not Dead Yet points out. The group opposes aid in dying because, it says, “people who are labeled ‘terminal,’ predicted to die within six months, are—or will become—disabled.” The six-month window, required by the Death with Dignity law, is “unreliable.” But any legalization, it claims, is an affront to all of us, particularly to the disability community. It is the further erosion of disability rights. Not Dead Yet is right that each of us will likely someday be disabled, either by disease, trauma, or old age. Terminal diagnoses are unreliable. I’ve had plenty of hospice patients live fewer than six months but also longer. Doctors make errors all the time; the body is an unpredictable thing. If the disabled were properly cared for, if they were valued by our society and our medical system, we would accept that disability is a fact of life, Not Dead Yet says. And the disabled (those who use, support, or want to use Death with Dignity where it’s legal) would not want to end their dying. They would not be “suicidal.”

Not Dead Yet also disputes medical futility—the concept that patients are being overtreated at the end of their lives. Our obligation is to do everything possible to prolong a person’s days, even if that person no longer wants to go on living, it claims. Those who do not want to live are suicidal and should be treated for depression; they should be shown their value. The group has vocally protested films that depict mercy killing, like the 2004 Million Dollar Baby, directed by Clint Eastwood, in which the protagonist, a female boxer, is helped to end her life. And the 2012 Amour, directed by Michael Haneke, in which an ill, elderly woman is smothered by her husband with a pillow. These movies, Not Dead Yet asserts, glorify mercy killing and devalue the lives of those who are in need of care. With that care, Not Dead Yet says, the dying would reevaluate. They would treasure the last days, regardless of the pain.

The group also protested the removal of Terri Schiavo’s feeding tube and has supported the Schindler family in their challenge to guardianship and medical surrogacy decisions to remove artificial “life”-prolonging treatments. Surrogates and family members may not always have their loved one’s best interest in mind, Not Dead Yet says. Which raises the question, who else would? As a society, we default to the assumption that families are the source of best interest for individuals, even as we watch for signs of abuse or coercion. Yes, elder abuse and medical coercion are real, but their occurrence is the exception, not the norm. And yet, Not Dead Yet’s answer to why families may agree to remove “aggressive” treatments? Families are murderous.

Patients, Not Dead Yet says, might not have their own best interest in mind either. The desire to end one’s life is suicidal, and our primary effort should be prevention, not support of their self-destruction. The group has long challenged POLST forms that allow patients, in advance of unconsciousness or incapacity, to designate their medical desires. Diane Coleman has written that the enforced use of POLST forms by those who are expected to die within the next twelve months is dangerous. In a 2013 video presentation to the Institute of Medicine’s Committee on Approaching Death (the text of which is posted on Not Dead Yet’s website), Coleman stated that the criteria are much broader than the hospice definition of terminal [six months versus twelve months], and sweep in many disabled people, people with muscular dystrophy, multiple sclerosis, Parkinson’s, and many other conditions, including me. Many of us are working, raising families, and living normal lives with some adaptations. Medical  professionals specializing in disability understand this “paradox,” but most practitioners do not.

Coleman’s and Not Dead Yet’s position is this: as much as I fear being hit by a bus and kept around for years, even decades, on a feeding tube, a body with no awareness of the world, no consciousness, Coleman fears a situation in which she experiences a medical catastrophe and won’t be kept alive. How does she account for people like me who don’t want to exist in some mentally or physically disabled state? I’m biased against disability, she asserts. Plenty of people “with tracheostomies and ventilators” are “able to work, go to school, and live in their communities.” In other words, I would want “life support” if I weren’t prejudiced, both innately and by society, against those who are on life support, who need machines or wheelchairs to keep going. I’m ignorant and uninformed of all the beauty that a disabled life has to offer.

Informed consent is a misnomer; in our lack of understanding— in our disdain—for disability, we cannot know what we would want in such dire situations. Only the disabled know that every minute, every scrap of time, is worth living, and our obligation as human beings is to demand every scrap of time for ourselves and others. Coleman’s defense of every minute on the grounds that those with tracheostomies and ventilators are productive and interactive—able to work, go to school, live in their communities—is proved by the fact, as Coleman notes in the video address, that she’s “employed two women with ‘trach-vents’ over my career and many others with serious, progressive, chronic conditions.” I suspect that Coleman’s appeals to normalcy or productivity don’t fully represent her measure of human value, but she knows her audience: a society that values lives based on contribution, too often defined as physical, psychological, and financial independence.

We have no proof that POLST forms misrepresent patients’ wishes, no examples that show lives maliciously cut short. The forms are filled out by a doctor in consultation with patients. But dead patients don’t talk; we can’t ask them, after all, what they really wanted. This lack of proof, to Not Dead Yet and Coleman, means that there aren’t enough studies to prove that the disabled, the elderly, and the infirm are being taken advantage of by biased doctors. Doctors are predisposed to see only the challenges of extensive lifesaving measures, not the value of lives supported by them. We can definitely use more challenge to the traditional and entrenched paternalism of medical culture, I say, but is the assertion of yet another group like Not Dead Yet that it knows what’s best for all of us any better? Coleman and other Not Dead Yet members claim to know us better than we know ourselves.

Not Dead Yet doesn’t go for theological justification of its position, like the family of Terri Schiavo, the Schindlers, or Frank Pavone. It doesn’t need to. Its members have experience; they know that life is sacred with or without God or any other defined moral source. Stephen Drake, who does much of the writing on the website and is listed as Not Dead Yet’s research analyst and media contact, has an anger that is real and personal. He’ll take whatever research, op-eds, and media serve his argument, and he’ll rail against what doesn’t with a defiant anger that demonstrates the fear that he and fellow disabled travelers have of medical culture, media culture, and culture at large. After the suicide death of actor Robin Williams, in a post titled “Robin Williams and the Hypocrisy of Suicide Prevention Organizations,” Drake wrote,

I, for one, am extremely unimpressed and underwhelmed by the suicide prevention brigade. Even in this latest episode of a publicized suicide, I see nothing in their messaging to indicate that any of the organizations or their reps care at all if old, ill, and disabled people kill ourselves (unless, of course, we’re Robin Williams).

In the post, he highlights the connection between legal aid in dying in Oregon and the high suicide rate there (according to the Centers for Disease Control, Oregon has the second-highest rate in the country after Wyoming, where aid in dying isn’t legal; nor is it legal in the other top-ten suicide states).

Drake castigates suicide prevention organizations for being blind to such a connection. Even the use of the phrase “aid in dying” infuriates Drake. It’s a euphemism that he considers an indication of how far down the road (or the slippery slope) American society has gone, how normalized suicide is. He’s right that aid in dying is a euphemism. But in his formulation of social ills that cause the premature death of the devalued and the vulnerable, Drake leaves no room for a rational conversation about pain and suffering, for the “humane” or “dignified” position that pain can be worse than life itself, particularly if that life is unconscious, unresponsive, or terminal. Not Dead Yet’s position has a tone of egotism: look at us, imagine how much pain we have suffered, how much discrimination, the fight that we must make every day to survive, to run this website, to be happy. If we can do it, if we can resist a world that thinks us unworthy, unproductive, inhuman, then so can anyone. And its members take this position knowing— railing against—a society that compounds that difficulty by not supporting the disabled, by not even seeing them. It’s impossible to watch Not Dead Yet’s activism and not be humbled, to not admire its work, to not rethink how easy it is to hop out of bed in the morning. The members give you no choice but to reconsider how you move through the world with physical privilege. Yet theirs is an arrogance comparable to the dominant position of hospice culture: we know the best way to die. In the case of hospice, that way is calmly, with reflection, caring company, and a dose of spirituality thrown in. With Not Dead Yet, that way is kicking and screaming. Do not go gentle.

Bill Peace, in my first interaction with him, which came through a series of scathing and convoluted blog posts, made it immediately clear that he was not “going gentle.” Drake read a post I had written and responded to it on his site. He wrote that I disregarded disability rights concerns because of “ignorance or a simple wish to use misinformation.” Peace responded on his blog that I was intentionally endangering the lives of the disabled—or stupid. I was surprised by the double attack. But, I had to ask myself, was my ignorance of disability making me inadvertently dangerous? Like the Americans who explain away the overwhelmingly high percentage of blacks in prison as a result of higher crime rates among the black community? Was I perpetuating a system that institutionalized inequality? In the case of disability, that institution was medicine, not prisons, or if not medicine explicitly, activists who wanted to kill off the most vulnerable around us.

On April 6, 2010, I drove up to Port Chester, a tiny coastal hamlet on the Connecticut–New York border, about an hour and a half north of New York City. Bill Peace and I had decided to eat lunch outside at Ebb Tide Seafood. Bill felt I was a perfectly safe lunch date—I’d never thought of myself as a danger to the disabled until our spat online— but I was now self-conscious. I spent the drive up to Port Chester cataloging my disability bona fi des. There was my Uncle Frank who was epileptic and had what today we call Down syndrome and had lived into his eighties. When I was a teenager, I babysat for a deaf child. My aunt Martha Jane had survived polio. My hospice patient, Mr. C, had Parkinson’s. I’d had colleagues, lovers, and friends with ADD, dyslexia, and Asperger’s syndrome. I’d spent a lot of time with elders, both as a hospice volunteer and, well, as a person with a family. Not once had I tried to take one of them out. My cataloging made me feel like a white person counting up her black friends to prove she’s not racist. I was determined to show Bill that I thought him every bit my equal. And that I wasn’t freaked out by disabilities or “abnormalities.” Bill, I was pretty sure, was determined to prove to me that he could do anything I could do, and also show that the world didn’t understand him, that the world saw just a chair when it saw him coming. How we—the culture at large, me, me and Bill together—were ever supposed to change that perception of disability, I didn’t know. Blacks and other minorities were often in danger because of public perception and prejudice. Other categories, like gender, and the danger that comes with being female, say, on a dark street, late at night, in heels and a short skirt? Now that’s a danger I knew well. I had skin in that advocacy game.

I arrived early in Port Chester. The Ebb Tide was boarded up when I got there, so I sat on the parking lot curb clutching my phone and watching for Bill’s van to pull into the lot. Bill, I knew, was about fifty, but when I saw him behind the wheel of his van, he looked younger. He was casual, in jeans and a long-sleeve T-shirt; his brown hair was long and pulled back in a ponytail, a few inches hanging down his back. It was just beginning to thin along his forehead. Bill parked and we decided to go over to another wheelchair-accessible restaurant he knew nearby. I watched him change wheels, from his van to his wheelchair. The Indian restaurant was quiet. We were among the first to arrive for the lunch buffet. The wait staff hustled to move a chair from our table to make a space for Bill. I picked up my plate and said, “Shall we?” Bill put his plate on his lap, and we moved down the row of steaming stainless hotplates on the buffet. We stuffed ourselves on Indian food and talked into the afternoon, as the lunch crowd came and went. Both of us were surprised to find that we agreed on most things, including the fact that the Internet was a great place to vent anger and make assumptions about others—assumptions that disappeared when you sat down in person. We got our nuance back by sitting face-to-face.

Bill told me that around the age of ten or eleven, he began to notice neuromuscular problems. His limbs didn’t move when or where he intended them to. His supportive family helped him to get the best treatment possible at the time. It was the early 1970s and a new era of treating paralysis was burgeoning. Once diagnosed with hydromyelia, a disease that widens the spinal cord and allows fluid to accumulate, Bill and his family knew what was coming. He would wake up early mornings and think about his big toe. If he could still move it, the day would be okay. Bill writes that when he was about twelve, a nun in his Catholic school told him, “You no longer need to do homework because you are one of God’s special children.” His mother would have none of it. She was determined that her son would receive the same education as every other child; Bill was promptly enrolled in public school. “No matter how sick I was and regardless of my ability to walk, I was not one iota different from my siblings and peers. I was a Peace, and in our family, my mother told us, we hold our heads up high and straight.” By the age of eighteen, Bill was fully paralyzed from the waist down. But his paralysis wasn’t like a straight line you could trace with your finger, above still feeling and below not. He was still able to sense some things, like pressure, below his waist. One of the first things I noticed about Bill was that he had a different sense of physical privacy than most. Except for my hospice patients, I hadn’t encountered a person who was so uninhibited when discussing his bodily functions and treatments. Caring for Bill’s body had been the task of many people.

Bill got his bachelor’s degree from Hofstra and his PhD in anthropology from Columbia, graduating in 1992. “What is a bad cripple? It is a person such as myself with an obvious disability who is well aware of their civil rights,” he wrote. Bill’s activism is a strange mix of tough-guy resistance and vulnerability. Online, he wrote, “I don’t want Neumann’s sympathy, or anyone else’s for that matter.” Bill is certain that society is out to get him; it’s been proven to him repeatedly. To counter that, he’s fostered and been taught to prove he is equal to anyone else. Young Bill was “brainwashed into an extreme sort of self-sufficiency and independence.” But as he’s moved on through life, marrying, having a child, divorcing, and ultimately taking up disability rights activism, he’s become aware of what that brainwashing prevented him from realizing. In October 2010, he wrote on his blog:

I have been completely independent since I was paralyzed. Indeed, I consider independence central to my identity. Thus I am like most Americans in placing great value on independence. Unlike most Americans however I realize how fleeting independence really is. I have given great thought to why we Americans value independence.

For those of us who are paralyzed, temporarily or permanently have lost independence, and the terminally ill we realize what a crock independence is.

How internalized that is, I’m not sure. But who of us can say we are without prejudice . . . or hypocrisy? In conversation, Bill’s defense of the disabled seemed to wane or become more nuanced when discussing mental disability. Certainly it did when discussing patients who were severely brain damaged, like Terri Schiavo. He could contest doctors removing his own life support, even Schiavo’s, but he had no easy way to discuss where the line between living and dead was drawn. His approach to disability rights was to always, without exception, err on the side of life, regardless of what that meant to the patient or her family.

In the spring of 2014, Bill wrote a controversial piece for a “Bad Girls” issue of Atrium, an annual report published by the Medical Humanities & Bioethics Program at Northwestern University’s Feinberg School of Medicine. Rachelle Barina and Devan Stahl, writing on Bioethics.net, summarize Bill’s essay like this:

“Head nurses” were women who gave young paralyzed men like himself blowjobs in the late 1970s. Peace describes “shapely young women” giving “world-class blowjobs” to men who were worried their “dicks” did not work and they could not “fuck.” Peace describes his own despair and his anticipated encounter with a “head nurse.” Peace nostalgically claims, “This woman was able to provide me a level of care and a connection that no longer exists.” “She reaffirmed my manhood and masculinity in a way I will forever appreciate.” “[T]he nurse injected a compassionate eroticism that made me a better man,” and ultimately, “. . . gave me myself.”

The entire issue was resoundingly denounced across various bioethics forums for its “Bad Girls” theme (girls infantilizes women in the medical industry; the phrase invites sexist stereotypes of “promiscuity and deviance,” perhaps not the pioneering women in medical history the report sought), but Bill’s piece was particularly offensive to those sensitive to gender disparity (including me). “While sex and sexuality can be a site of power for women, we live in a culture where all too often women’s bodies are assumed to be objects available for use by men.

Regardless of the position of power a woman occupies, she is vulnerable to violence and exploitation by men who believe it is a woman’s duty to affirm their masculinity,” write Barina and Stahl.

Bill’s version of determination and (masculine) independence is undergirded with an unwavering fear of the medical system, a sense of vulnerability and invisibility that is the result of his experiences over the past thirty-six years he’s been in a chair. A constant refrain is how defiant and disruptive he is, and how he challenges the expectation that, because he’s in a wheelchair, he should be sweet and agreeable, happy to take what he can get. He rails against doctors, nurses, and the able-privileged; the holy well-wishers who offer him unsolicited prayers; the Christopher Reeves of the world who are disabled and search only for a cure, not acceptance of their new bodies; the teachers who ask him again and again if he is indeed his son’s father; the organizers of conferences on disability who ask him to speak but host the event in inaccessible lecture halls; the manufacturers who can and do offer necessary products, like his high-tech bed or seat cushion, at exorbitant prices; the legislators who say placating things about the disabled but do nothing to change laws; even the “pro-life” activists who have claimed disability for their own purposes.

Our conversation that afternoon never waned, but eventually we both realized that lunchtime had long since passed. The sun was low over Port Chester; the light off the water turned every smooth surface around us into a blinding white. It was time for me to drive back to the city. I excused myself to go to the bathroom, and when I returned, I found Bill being chatted up by a couple who was seated at the table next to ours. They had handed him a prayer card, a little tract that had scripture printed on it in a cursive font. They had asked him how long he’d been “like that.” They had told him they would pray for him. I contained my giggle. Bill was not the prayer type— not in a foxhole, and not in a wheelchair. Outside, as we made our way to the parking lot, Bill told me that such encounters happen all the time. On Bad Cripple, Bill once posted an account of a man who tracked him through the grocery store and stopped him as he was loading bags of produce into his van. “God struck you down because you have evil in your heart. You committed a mortal sin,” he said. I told Bill that I thought we were all guilty of profiling those around us (although the grocery stalker’s profiling was particularly pernicious, an Evangelical overachievement). I clutch my purse when walking past a group of young black men after dark. I know better, but I’ve caught myself doing it anyway. I scowl and flip off middle-aged men who tell me to smile, who tell me I look good in my work clothes, who tell me my husband is a lucky man, but only when I’m in public and feel safe enough to avoid physical retaliation. Race, gender, disability, sexuality: we all make assumptions based on how we see a person and, when we should know better, say things that show those assumptions. How do we change profiling? How do we stop discriminatory comments? How do we prevent the physical danger that accompanies them? Bill and I both shrugged. We keep doing what we do; we keep pointing it out.

Bill explained to me that some discriminatory acts were more dangerous than others, and I agreed, particularly systemic inequality, like the discrimination that medicine and other institutions have (developed or not addressed) against the disabled. It’s built into systems; it’s part of the culture. The good news is that cultures can change, with the right labor, messaging, and awareness. The deinstitutionalization of disabled children has led to greater awareness of special needs in education, for instance. The Americans with Disabilities Act changed some things, but not enough. With the legalization of aid in dying, Bill said, people like him—or those with even greater disabilities— were being told their lives weren’t worth living; it was a backward step, or a lethal forward one. “Clinicians identify what is physically wrong with the body. Illness in contrast is what a patient experiences when they are sick—and all disabled people are thought to be sick in some way,” he wrote on Bad Cripple (without acknowledging that chronic illness is also often debilitating). Still, I believed him, but I wasn’t convinced that Not Dead Yet’s approach—condemning those who didn’t agree—was the best culture-changing tack. It wanted to be the audacious Black Panthers of disability rights, but its roots were in lashing, inexact, cynical (and often illogical) humor. And I still wasn’t sure that thwarting legitimate rights for others—suffering, desperate others—was a moral or worthy objective. On that visit, he told me he had just joined the board of Not Dead Yet.

A few months later, I went up to Port Chester again, and we had another good lunch. Our friendship ambled on over the months and years, either one of us checking in on the other. In August, Bill wrote to tell me that he wasn’t doing very well. He had had an unsuccessful surgery—ironically, he told me, on the twentieth anniversary of the Americans with Disabilities Act—to address a “grossly infected stage four wound.” He had been bathing and noticed an odd sensation on his hip. When he pushed on it, his hand went through the flesh and to the bone. The smell told him it was infected. Pressure sores are common worries for para- and quadriplegics, for elders who don’t move a lot, or anyone who experiences prolonged pressure on an area with a bone. The pressure stops blood from flowing to soft tissue, and the tissue dies. Bill is really good at shifting his weight regularly; one of the first things you notice about him is his constant movement, lifting one side of his body off the chair, then the other. He’s lived with the threat of pressure sores most of his life. But his experience was now proof of how dangerous they can be. For weeks he was hospitalized; he went through two surgeries. For months he was unable to sit up, only working up to being vertical through laborious rehabilitation and dogged stubbornness. “Do you have enough help around? Are you recovering?” I e-mailed. Three weeks later, he wrote to say that he needed more surgery. In December, he wrote on his blog:

have thought of little else aside from my wound in the last 24 hours. I feel as though I have somehow failed or my body has failed to heal. I have been a model of “patient compliance” and know I am not to blame. I do not sit up often, my sitting is in fact severely limited. I try to bend my hips as little as possible in fact. None of this has done much good. I am worried—deeply worried. Flap surgery [in which skin with its own blood supply is moved from one donor to another] I see as a measure of last resort. If it fails I am in deep trouble. I worry not about the routine things that go wrong with surgery—I accept that risk as beyond my control. My worries are what happens if flap surgery fails. At that point I am at the end of the road—meaning I will never sit normally again. It will be just me and these four walls.

In the July-August 2012 issue of the Hastings Center Report, Bill wrote an essay, “Comfort Care as Denial of Personhood,” describing an experience he had during those long months of surgery after surgery. “It is 2 a.m. I am very sick. I am not sure how long I have been hospitalized. The last two or three days have been a blur, a parade of procedures and people,” the essay begins. He goes on to explain that he had been “miserable, fevered and vomiting for several hours” when a doctor (“hospitalist”) entered his room. “What transpired after the nurse exited the room has haunted me. Paralyzed me with fear.” The doctor asked Bill if he “understood the gravity” of his condition, and Bill said yes. The doctor went on to explain what could happen; it could take six to twelve months to recover, if the wound healed at all. It was possible that he wouldn’t be able to sit up again, sit in his chair again. His independent life could be over. The financial and emotional costs he would face, regardless, would be staggering. He told Bill what potential damage the antibiotics he was on could do to his organs, particularly his kidneys. He told Bill that recovery wasn’t guaranteed; many don’t survive. “This litany of disaster is all too familiar to me and others with a disability. The scenario laid out happens with shocking regularity to paralyzed people.” Bill writes in the Hastings essay:

His next words were unforgettable. The choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forgo any medication, including the lifesaving antibiotics. If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort at all. Although not explicitly stated, the message was loud and clear. I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a lifetime in bed. I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live.

To anyone—me—who has been writing about informed consent as a means to achieve medical rights for patients, the essay is shocking. In my mind, the doctor was doing his job; he was telling Bill what the future could hold and was giving Bill the chance to determine what exact medical treatments he wanted. But Bill saw it as a threat. He writes that disability memoirs often document discrimination, but few include experiences such as his. He considers the doctor’s stark disclosure of what could happen to him as “the ultimate insult,” particularly because he was so low and so ill. He compares the experience to assisted suicide: “In a visceral and potentially lethal way, that night made me realize I was not a human being but rather a tragic figure. Out of the kindness of the physician’s heart, I was being given a chance to end my life.” And he condemns the use of do not resuscitate (DNR) orders for patients like himself, who are desperate, perhaps even willing to die rather than endure the pain and suffering. He writes in the Hastings essay:

I narrowly avoided the outcome that the physician described, but he was correct in much of what he told me. I was bedbound for nearly a year. Insurance covered few of my expenses. I took a financial bath. But the underlying emotion I felt during my long and arduous recovery was fear. My fear was based on the knowledge that my existence as a person with a disability was not valued. Many people—the physician I met that fateful night included—assume disability is a fate worse than death.

The Hastings Center published several responses to Bill’s essay, including one by Anita Silvers, also an academic who has been in a wheelchair since childhood. She writes that although she’s “not yet believed myself to be fighting for my life against professional health-care providers,” she knows why Bill was so shaken by the encounter with the doctor: it’s not because Bill is unaccustomed to discrimination, or because comfort care was mentioned as “one among several alternative courses from which the patient is free to choose.” Rather, she thinks Bill’s reaction was because of the “different perspectives” Bill and the doctor had on “the risks involved.” Bill and Silvers are exceptional. They’ve lived most of their lives with disability and are familiar with the challenges, the pain, and the patience necessary to live their lives in chairs, to carry on in the face of discrimination, with the thoughtlessness of our laws; the biased values the rest of us hold dear, and the lack of ramps, parking, and job opportunities, resources and care, and on and on. Those who encounter disability later in life, from trauma, old age, or disease, simply don’t have the same ability to say, I’m okay never walking again, as Bill proudly has.

Bill doesn’t fear disability because, for thirty-six years, it’s been his life. He’s learned how to be independent, to tolerate pain, to fight. Bill contests measures of quality of life because he has a different scale. Being in a chair doesn’t scare Bill (or Silvers), but it scares me . . . and maybe Bill’s doctor. After years of hospitalizations and treatments, Bill surely has a higher pain threshold than I do. And after years of fighting for his health and mobility, Bill is definitely stronger and tougher than I am. We should all praise that scale, but we don’t—and can’t—all abide by it. “People like us,” writes Silvers about herself and Bill, “are experienced at being functional under adverse health conditions and thus have developed not only knowledge, but also adaptive skills, capacity to maintain morale, and endurance that surpass those of the ‘normal’ patient. These are strengths that everyone, and not just health care professionals, should learn to appreciate.”

Peter Strauss, ostensibly the progenitor of elder law in New York State, asked me to speak at a conference he was organizing at New York Law School on end-of-life issues. Strauss’s conference, “Freedom of Choice at the End of Life: Protecting the Patient’s Rights over Government, Health Care Providers, and Pressure Group Resistance,” was a clear defense of greater rights for dying patients, including legalization of aid in dying. Strauss is on the board of Compassion & Choices. He asked me to present on a panel titled “Special People, Special Issues.” At the time, I was researching Bill Coleman’s case. He was still in a Connecticut cell on a hunger strike, being force-fed by the prison medical staff. My talk compared the use of feeding tubes in hospitals and in prisons. I followed the Reverend Martha Jacobs, a pastor at Briarcliff Congregational Church and a professor at Union Theological Seminary, who spoke about various religious views regarding end-of-life issues; and Alicia Ouellette, a professor at the Mt. Sinai School of Medicine program in bioethics. Ouellette’s talk directly addressed the concerns of those in the disability community regarding legalization of aid in dying and removal of treatments at the end of life. She knew Bill Peace, and her talk referenced his writing. With nuance, Ouellette examined the reason why so many in the disability community fear the health-care system, and she suggested a path forward:

Advocates for choice in dying might better serve their cause by listening to—and learning from—people with disabilities about their experiences in the health-care system, and then advocating for systemic change. In order to break the impasse between advocates for choice in dying and disability advocates (an impasse that has played a role in stalling the adoption of choice-in-dying laws around the country), advocates for choice in dying would be well served by working to reshape the legal and health-care system more broadly to ensure that it respects people with disabilities while they are living.

It was a smart talk. Afterward, I walked out into the lobby of the law school to find the bathroom. In a row cutting across the center of the lobby were activists from Not Dead Yet who had come to protest the event. They were a profound presence: silent, some on ventilators, with signs in front of them as they sat in their wheelchairs. I took their flyer. NOTHING ABOUT US WITHOUT US: WE ARE DISABILITY RIGHTS ACTIVISTS WHO OBJECT TO A SYMPOSIUM THAT CLAIMS TO ADDRESS DISABILITY RIGHTS CONCERNS BUT INCLUDES NO PRESENTERS FROM THE DISABILITY RIGHTS MOVEMENT. They rightly challenged that no one speaking that day, no one on the (insensitively named) “Special People, Special Issues” panel, was from the disability community. “Ouellette [is] someone who relates slanted, distorted and outright ‘straw man’ versions of disability critiques” and “gets many things wrong about disability issues in her book.” It was an unfair assessment of Ouellette’s work. But the group’s accusation was right; the person talking about the disability community’s concerns did not identify as disabled.

I flipped the flyer over. “Ann Neumann, instead of giving a fair account of the concerns of disability rights advocates about these issues, inserts extreme slogans from the Religious Right—and then implies that we are jumping on their bandwagon because we are just poor, scared little cripples who can easily be ‘recruited’ by the right propaganda. She denies the agency of disabled people, asserting that those stands we take that she disagrees with can’t be our own.” It was a horrible, dishonest distortion of my position and work. I had backed my way into disability (as a reader and blogger) from religion, not the other way around. I walked to the bathroom and cried my eyes out. But I finally understood that Not Dead Yet took no prisoners. Professionalism, honesty, even the kind of integrity that I expected in the loose and fast world of journalism—these niceties are the privilege of people who don’t every day feel their lives are being threatened by medical efficiencies, a blind press, and people like me. I knew Bill Peace well enough to know that survival for him meant projection of his fear and vulnerability onto anyone, everyone. He had no time for refinement, for dallying over terms like “brain dead” and “autonomy.”

His pain and the discrimination he lived with were his authority. Bill and the members of Not Dead Yet didn’t need me or Peter Strauss or Alicia Ouellette to tell them that they were safe. They knew they weren’t and we were all guilty.

In August 2013, a man named Timothy Bowers fell out of his deer stand, crushing his C3, C4, and C5 vertebrae, three of the seven in his neck. Bowers faced a future on a ventilator and in a wheelchair. He was thirty-two and a newlywed; he and his wife, Abbey, were expecting their first child. According to the wishes of his family, doctors brought Bowers out of a coma to ask him if he wanted to remain on life support. “Tim Bowers got to decide for himself whether he wanted to live or die,” read People magazine. “The last thing he wanted was to be in a wheelchair,” Abbey told the press. “To have all that stuff taken away would probably be devastating. He would never be able to give hugs, to hold his baby. We made sure he knew that, so he could make a decision. Even if he decided the other thing, the quality of life would’ve been very poor. His life expectancy would be very low.” About seventy-five family members crowded into Bowers’s room as he was dying. Doctors removed the breathing tube from his mouth, and he was able to communicate with them. “I just remember him saying so many times that he loved us all and that he lived a great life,” Abbey said. “At one point, he was saying, ‘I’m ready. I’m ready,’” said his sister, Jenny Schultz.

Bowers’s death was personal for Bill Peace. But for the grace of his family and his fight, Bill would be dead like Bowers. In fact, every day Bill has no choice but to fight to stay alive. “I am disgusted. Ashamed really of American society. His death is a tragedy,” Bill wrote on his blog, Bad Cripple. He blamed everyone: Hollywood, probably poised to make a movie out of Bowers’s life; doctors, nurses, bioethicists, Bowers’s family. “Bowers needlessly died. In fact when I first read the story my first thought was this man was murdered. Legally killed by his family and physicians. Bioethicists are providing the post mortem cheer squad. Patients [sic] rights reign supreme.” Bill closes his post with what, to me, is a greater tragedy than Bowers’s death: “In choosing death Bowers was a hero. In choosing life I am disparaged, disliked, and seen as an economic drain. My existence is deeply stigmatized. Dying is easy, it is the living that is a bitch.”

Bill presented a paper to the Future of Disability studies group at Columbia University the month after Bowers died. (It was distributed to attendees but has not been published.) “Kevorkian’s Body Count,” a bit of a logical mess, argued that the “primary reason the debate surrounding end of life care and assisted suicide legislation is polarized is due to the legacy of Jack Kevorkian.” Kevorkian was convicted of second-degree murder in the late 1990s for helping 125 people die. To some, Kevorkian was a deliverer; to others, a media master. To the aid-in-dying community, Kevorkian was a monstrosity and a setback for its efforts because he flouted the rules they hoped would make aid in dying palatable to legislators, the medical community, and society. To Bill and others in the disability movement, he was a cold killer, part and parcel of the “right to die” movement. Bill’s paper chronicles his effort to contact the family members of those who Kevorkian helped die. Rather than see Kevorkian as a lone actor, a wild eccentric with a mission, Bill uses Kevorkian’s outsized media profile to paint a broad picture of what he considers a “culture of death,” a culture that aims to eliminate the depressed, disabled, and sick. He points to favorable media—movies, songs by rapper Ice T, “You think your life is tough? Call Kevorkian”—to show that Kevorkian “helped change the cultural perception of death and assisted suicide.”

The paper roams around various subjects: choice, informed consent, patient-centered care. But it doesn’t have a clear logical thread. It’s an activist’s screed. It points at subjects disapprovingly, mockingly, and then moves on to the next. Patients and families don’t know what they need; Bill does. But he gets a lot right, too. “The way disability is framed is misleading. The overwhelmingly negative perception of severe disability reinforces a normative view about the quality of one’s life.” I knew he was right. But I also knew that I wasn’t changing my living will any time soon.

I drove up to Bill’s house in Katonah, New York, a few months later for dinner. It was a cold night and I arrived after dark. It’s an open-plan house of red brick with lots of windows. I brought the wine and salad; Bill roasted Cornish hens; their crispy little bodies were nestled side-by-side and decorated with spices. We laughed, we argued, we caught up on what was happening in our lives. It was as if I knew two Bills: the one online and on paper who raged against the world, and the one who gave me a tour of his house and cooked dinner for me.

That night, after the dishes were done and we both began to yawn, Bill gave me a present—a gorgeous wooden box slightly larger than a cake box. The heavy wooden lid is beveled so that when you place it back on the box it makes a solid, echoing sound. Indigenous paintings, graphic, rounded faces of men or animals in red and black, cover its four cedar sides. A circular, petaled stamp on the bottom says “Upper Skagit Tribe.” The tribe was one of many that populated the Puget Sound area until the mid-1800s when it was pushed onto a reservation, its religion and hunting restricted by law. In 1968, the tribe was retroactively paid $385,471.42 for its land. Today tribe members operate an enormous casino and a 103-room hotel and conference center near Everett, Washington. Bill had picked up the box on a trip there years before. He was cleaning out his house to prepare for a move to Syracuse where he was starting a new teaching job; he was preparing for a new phase in his career.

The aid in dying movement has entered a new phase as well. Some of the movement’s leaders have taken to heart Alicia Ouellette’s challenge to advocate for aid in dying from an allied position within disability rights. Kathryn Tucker, the longtime director of advocacy and legal affairs for Compassion & Choices who argued key cases before state and federal supreme courts (including Baxter v. Montana, the case that made aid in dying legal in the state), became executive director of the Disability Rights Legal Center (DRLC) in September 2014. Prior to the appointment, on September 13, 2014, Not Dead Yet’s Diane Coleman wrote an open letter to the DRLC, posted on the Not Dead Yet site, that stated, “As organizations many of which have partnered with DRLC in the past, and which hope to have productive collaborations with you in the future, we would be very troubled if the hiring of Ms. Tucker were seen as a message to the disability community—or to society at large—that the DRLC has taken, or may take in the future, an opposing position to that of the established disability community on the legalization of assisted suicide, isolating itself from its natural allies.” Two dozen disability and related groups signed the letter. Five months later, Tucker and DRLC brought a case against New York State for the right to aid in dying.

Excerpted from "The Good Death: An Exploration of Dying in America" by Ann Neumann  (Beacon Press, 2016). Reprinted with permission from Beacon Press.

By Ann Neumann

Ann Neumann is a visiting scholar at the Center for Religion and Media at New York University, where she is a contributing editor to the Revealer. Her articles have appeared in the New York Times, Bookforum, the Nation and Guernica. This is her first book.

MORE FROM Ann Neumann

Related Topics ------------------------------------------

Assisted Suicide Bad Cripple Books Death And Dying Disability Rights Not Dead Yet