I read "A Life-or-Death Situation" by Robin Marantz Henig early this morning. It was not a good way to start my day. See http://www.nytimes.com/2013/07/21/magazine/a-life-or-death-situation.html?pagewanted=all&_r=0 In fact it has taken me all day to calm down. Henig's characterization of the life and body of Brooke Hopkins is disturbing and the title of her article is misleading. Brooke Hopkins and his wife Margaret Battin live in Utah and were a typical academic couple until 2008. Their life changed in an instant when Hopkins had a bike accident and became an upper level quadriplegic. Hopkins, recently retired, was a professor of English at the University of Utah. Battin is described as being an "international leader in bioethics" whose work has focused on suffering, suicide, and dignified death. While never explicitly stated, Hopkins and Battin are supposedly ideal people to discuss end of life issues. Battin has published widely on the matter and her husband is a learned man who post injury is the embodiment of end of life issues (by itself this is misleading). Henig obviously loved the irony involved and used Hopkins and Battin to personalize end of life care. In short, Hopkins and Battin are the perfect hook to lure in readers.
Within a few paragraphs I knew the article would be hopelessly distorted and anti disability. The descriptions of Hopkins body are deeply offensive. The not so subtle sub text is that life with a disability, especially for a vent dependent quad, is filled with pain and suffering. Such a life is terrible for Hopkins and by extension his wife. This point is made with the subtlety of a brick thrown through a plate glass window. Prior to his injury Henig makes it clear that Hopkins was a virile man who traveled the world. He was a larger than life figure and to be rendered a quadriplegic is a fate worse than death and his only saving grace is his powerful intellect. Of course Henig does not express this so bluntly. Instead she peppers her essay with the following:
By the time Battin saw her husband post injury he was "ensnared in the life sustaining machinery he hoped to avoid, the decisions about intervention already had been made".
Henig plays up the irony of Battin's scholarly work and how suddenly "they turned unbearably personal. Alongside her physically ravaged husband, she would watch lofty ideas be trumped by reality--and would discover just how messy, raw and muddled the end of life can be".
In the weeks after Hopkins injury Battin's effort to support self determination in dying was called into question by "her husband, a plugged-in mannequin in the I.C.U., the very embodiment of a right-to-die case study".
Hopkins was "physically devastated but still free" and capable of making a decision "that would cause anguish". The implied choice was death over disability.
A vibrant energetic man prior to injury, "all that energy went absolutely still at the moment of his collision.
Hopkins and Battin lived the life of scholars but they "learned that no mind can fly free if a useless body's incessant needs".
Hopkins, a month before his 71st birthday, "was dressed as usual: a pullover, polyester pants that snap open all the way sown each leg, a diaper and green crocs".
For Hopkins, "what elevates his life beyond the day-to-ay slog of maintaining it--the vast team effort required to keep his inert sack of a body fed and dressed and clean and functioning--is his continuing ability to teach part time through the University of Utah's adult education program."
"A man who had always taken great joy in preparing, sharing and savoring food decided to give up his final sensory pleasure in order to go on living". (Hopkins had a feeding tube inserted to avoid aspirating food into his lungs.)
I am truly stunned by the descriptions of Hopkins body. He is a plugged in mannequin whose useless body has incessant needs. A dignified man has been reduced to wearing polyester pants and a diaper. When I read passages such as this in the supposedly venerable New York Times I wonder first what was the editor thinking and secondly it is no wonder people have such a skewed concept of disability. Articles such as Henig's perpetuate an overwhelming negative perception of disability. While I find much of what Henig wrote objectionable what bothers me the most is the lost opportunity. Henig mentions Battin does not shy away from fringe groups who push for "self deliverance" at the end of life. When I read this I wondered does Battin shy away from those opposed to assisted suicide and euthanasia? I have no idea because a group such as Not Dead Yet is not even mentioned. In fact no mention is even made of the serious concerns many have with legalizing assisted suicide.
Henig maintains the core principal in Battin's work is autonomy. Common sense indicates a competent person should be free to make an autonomous decision about the end of life. In theory this is logical. However, as I have pointed out many times, we do not live in a world of theories. We live in a flawed world and no human being dies in social isolation. Larger cultural factors exist and profoundly affect how we perceive end of life care. For example, Hopkins was paralyzed much later in life. He had a well established career as did Battin. They have extensive health care insurance and a learned and detailed discussions about end of life issues is well within their realm of ability. But what about others who live a dramatically different life. What if Hopkins was 22 years old and was a day laborer? What if he had no health insurance, no known family, and lived on a third floor walk up apartment in Brooklyn. Does such a man have the same ability to be as autonomous as Hopkins? I think not. Even from a privileged position Battin and Hopkins struggled. They had excellent health insurance through the university and Medicare. This is great but getting an appropriate wheelchair at the cost of $45,000 was a battle. This says nothing of the fact they spend $250,000 on health care workers. These numbers do not surprise me one iota. What people with no exposure to disability fail to realize is that the best insurance in the world cannot empower people with a disability. And disabled people with health insurance are the lucky ones. Battin and Hopkins embody the failure of the best our health care system offers people with a disability. We people with a disability are in short set up to fail and die.
It is one thing to discuss lofty ideals of autonomy but another to live in a hostile world that deems people with a disability as an economic drain. Battin and Hopkins are lucky--hard to imagine this I know. The man I described above who experiences a SCI injury is screwed. He is doomed to fail despite the fact he enjoys the same civil rights as Hopkins. Who will advocate for him? No one. Maybe a bored social worker will make an effort but the fact is nationwide resources for people with a disability are grossly inadequate. Talk about patient centered care and autonomy do not mean much when you are a young man facing life in a nursing home. Suicidal thoughts for this man are a logical reaction to an impossible situation. Forget about suicide prevention--his desire to die is logical.
People who advocate for assisted suicide legislation do not want to enter into a discussion about social inequities and a corrupt for profit health insurance industry. Compassion and Choices and other advocacy groups that push for legalizing assisted suicide rely on gruesome end of life stories. As recently noted by Marilyn Golden in the Sacramento Bee, no one wants to discuss Barbara Wagner, Kate Cheney, or Randy Stroup (for those that never heard these names a simple google search is suggested). No one wants to talk about Don Mackay in Australia whose death was tragic. I urge people to read Theresa Mackay's Without Due Care. One could also read Barbara Farlow's work about her daughter Annie who died needlessly. Gripping reading can be found in the work of parents with children and adults with a profound disabilities--these are the most vulnerable and socially isolated individuals in our world. These parents struggle to get adequate care for their children. Abuse is rampant among the profoundly disabled and lead to ethically questionable treatments such as growth attenuation.
I fear my words will fail to resonate. I am preaching to the choir here. The comments that follow Henig's article in the NYT are largely supportive if not effusive in praise. I expected this. Whenever a person with a disability expresses a desire to die the collective response is supportive. People with a disability that express a desire to die are brave. They are heros. Of course you want to die. This is a logical response to disability. Those that want to live are a problem and quickly deemed bitter. I urge people not to be swayed by emotion. Take a hard look at end of life issues, assisted suicide legislation, and how the elderly, terminally ill and people with a disability struggle financially and socially. Put yourself in the position of a person with a disability. What happens when a person with a disability becomes seriously ill? Diagnostic equipment and hospitals rooms are notoriously inaccessible. Worse, disabled bodies require more labor and expensive technology. In a for profit health care system we are an economic drain. But do not stop there. How many families are willing to support a person, an elderly terminally ill parent for instance, until all finances have been spent? The point I am trying to get at is the social pressures are crushing. Some people are forced to decide between health care and a child's tuition payments. In short, my reaction to Henig's article is different. I see the ethical conundrums at the end of life as being messy, complex and inherently flawed. Assisted suicide is not the answer. We as human beings can do much better.
21 comments:
It was obvious it was going to be a terrible article from the first line of the third paragraph: "If Peggy had been there and known the extent of Brooke’s injury, she might have urged the rescuers not to revive him." This one sentence not only removes all suspense as to the value the writer places on Mr. Hopkins' post-injury life (none), but also reveals the deep stupidity of thinking that it's really possible to make a split-second assessment to withhold treatment based on a guess at prognosis while a person is still lying on the pavement, *and* think through all the implications, in order to make an accelerated arrival at the aforementioned value judgment. That sentence was where my better judgment told me not to read any farther. I should have listened, because it kept getting worse.
I have rarely read such patronizing, paternalistic, melodramatic, abhorrent drivel. Who the HELL refers to another human being as having an "inert sack of a body" (Ignorance again, as well as arrogant, shameless nastiness. A corpse might, on a tactless day, be described as an inert sack. A paralyzed body most assuredly is not.)
I could go on, but I need to stop looking at this steaming pile of toxic waste for my own mental health. The writer is a fool who doesn't deserve the power to ruin my day (or yours)... but the fact that this kind of effluent makes it into the NYT... *that* is tough to take. Yes, there's so much more to say about the assisted suicide issue vis a vis disability, but I cannot even get past the language and the attitude directed at this one individual profiled in order to think about that part calmly. Seriously, it makes me want to pith this woman with a mouthstick. Sickening.
Morbid curiosity got the better of me, and I watched the video. Surprisingly, it turned out to be better than the article, because the subjects got to speak for themselves without being negated or preempted by the biases of the "journalist," and they are thoughtful, intelligent people who obviously love each other and who value their lives together (both together and individually) in spite of the difficulties. The visual them walking through the graveyard (!) with the mournful piano music in the background, as an anything-but-subtle metaphor for their lives... I could've done without that. God forbid the filmmaker should let the words and gestures and lives of these people speak for themselves, instead of hitting the viewer over the head with how they're supposed to feel about it. But at least they did get to speak, and as such they emerged as real, vibrant people with real lives that have both rewards and challenges, not the tragic caricature that drowns out their own voices and perspectives in the written article. Good journalism always involves striking a balance between providing context, and getting out of the way and letting people and facts speak for themselves... but here, as is so often the case, disability is taken as granting license to prejudge and to trap the reader inside that prejudgment. If the writer doesn't know better, the editors still should. I wonder how Battin and Hopkins themselves feel about how this came out...
Lynn, The bias evident in the article is overwhelming. One could spend much time deconstructing what Henig wrote. I merely pointed out the most offensive language. I do not care about what was written in the bigger picture but am deeply disturbed the editors of the NYT let this go to print as written. The editors of the NYT should be taken to task.
I would love to know what Hopkins and Battin think of the article. If I were Hopkins I would be deeply offended. The video was not as bad but still Walking by the graveyard and the music? Real subtle. One last point, SCI is not a terminal condition it was portrayed to be.
Great commentary, Bill! the writer's language is inexcusable and hateful. Why is it that whenever I see myself in the media, it's about how awful my body is and how death is the best way forward. What about a social media campaign to demand an apology? It would be fun.
John, It does appear the disabled body is an afront to others. Frankly I do not get it. I look in mirror and see a typical middle aged man. I sent the author an email. It was polite but pointed. No reply. Just might send the NYT editors an email as eell.
Thanks for the excellent piece.
Actually, it is not entirely surprising that the New York Times would run something like this. As is pointed out in the book, "The Disability Rights Movement," by Doris Zames Fleischer and Frieda Zames, the editorial bent of the Times over the years has been downright hostile to disabled people.
The Times opposed the 1973 Rehab Act, opining at the time, "The costs of rendering the handicapped 'equal' have threatened to become especially acute in publicly financed transportation."
In 1984 the Times reacted to a court injunction concerning subway station accessibility: "The costs of rendering the handicapped 'equal' have threatened to become especially acute in publicly financed transportation."
In 1989 the Times came out in opposition to the proposed Americans with Disabilities Act, arguing that the legislation was "vague" and that the "costs could be monumental."
In 1991, immediately following the passage of ADA, the Times continued to lament the costly "burden" supposedly mandated by this legislation, saying, "Unfortunately, federal law requires newly constructed public facilities to be accessible to the handicapped."
I'm sure if one dug through copies of the Times over the past several years, they would also come up with more recent editorials expressing similar views.
-- Keith Rosenthal
Keith, The NYT take on disability rights is consistently negative. They balance this negativity with puff pieces about people with a disability that are witty, accomplished, or able to "overcome" their disability. I do not have the time or inclination to deconstruct what the NYT has written over the years. But it sure does sound like an ideal paper a student in college or university could write. In fact it might make a good MA thesis.
I'll join in in the demand an apology fun! #notdeadyet is alive and talking but #NYT has one foot in the coffin and scrambling for appropriate words
"I see the ethical conundrums at the end of life as being messy, complex, and inherently flawed."
Amen to that. This writer's descriptions of Mr. Hopkins' post-accident body are irresponsible and inexcusable. But a moment of full disclosure here: as an able-bodied reader, I scarcely noticed them during my first read through the article. As an ethicist, I share this as a double indictment on both myself and what I am (finally) starting to notice as the inurred cultural norms regarding disability.
In the 1960s, the New York Times regularly used the word "Negro" in its reporting and editorializing. The civil rights movement put enormous pressure on them to stop using that word. They have. We need to do the same. Our advocates in the New York City area should meet with the editorial board. There should be sit-ins. They have learned in the past to stop offending people. We have to teach them those lessons all over again. Different difference, same struggle.
Rachel, I sent my post to the author. I received a speedy reply and she apologized for her description of the disabled body. I accepted her apology.
Ronn, The fact you and I suspect the vast majority of readers did not notice the overwhelmingly negative descriptions of the disabled body is a huge problem. It is proof positive people with a disability are devalued in the extreme. The fact such language was not picked up by editors of the NYT is inexcusable. For goodness sake, they have published article after article about how people with a disability should be referred to. Again, this illustrates disability bias is deeply ingrained.
Mike in Albany, To get the NYT to stop using negative language with regard to disability would require a 1960s style mass demonstration. I do not see that ever taking place. Another variable to me is Bloomberg's anti disability rhetoric in NYC. His opposition to making taxis accessible reminds me of Koch who violently opposed putting lifts on MTA buses. Both mayors were aggressively anti disability and history has shown Koch was wrong. I think the same will be said of Bloomberg.
Ronn, thank you for having the courage to be candid about how the language in this article did NOT strike you right away. I think that's very, very important, because I suspect it's true for a vast majority of people, but most would not have the self-reflection to realize it.
Most people have *seen* people with disabilities. And there's a tendency, in our culture at least, to place tremendous weight on visual familiarity. "Seeing is believing," and so forth. But visual imagery leaves so much out, and leaves so much room for misconception.
I can easily imagine how the words in this article failed to strike you, because I know what the world looks like through that lens. It's like looking for "red flags" through red filter - it just blends into the ambient environment and becomes unremarkable. The words aren't personal, and they resonate with ideas that are already out there, and to which we're already desensitized.
At the same time, my own personal experience led to a completely different experience on the first reading. I do not have a disability myself, but I have spent what must total years of my life in direct physical contact with people with one type of paralysis or another. I think it takes that kind of interaction to dispel the myth that a paralyzed body is somehow less alive. We learn from the prevalence of exactly these sorts of messages to imagine the bodies of disabled people as cold, inert, unresponsive - a frightening blend of life and death. It's disturbing how deeply embedded these ideas are in our culture - so much so that even direct, powerful expressions of them slide my unnoticed.
Hands-on knowledge changes all that. To me, there's no way these words could slide by. It is a blow to the gut to see the body of a quad described this way in the NYT. Paralysis changes, not the vibrant, living function of the body, but the *relationship* between that person and his/her body. That relationship needs to be rebuilt, renegotiated, and I have had the privilege of being a part of that process. This involves fully acknowledging and respecting both the person *and* their body. To attack either is to attack both - the words in this article constitute an assault on the bodily integrity and validity of every person with paralysis that I've ever cared about.
I wonder how people would react if the NYT published an article about an aging person, and used similarly disgust-evoking language to describe the changes in his/her body. Or, suppose the NYT were to profile some of the Boston bombing survivors, and use this kind of rejecting, objectifying language to describe their injured limbs. I think the public reaction would still be dialed-down below what it should be, because there is absolutely bias against aging bodies and bodies with missing limbs... but I still think people would notice, and think "Wow, that's harsh. That really isn't a very nice way to describe that person's body." But disabilities that interfere with movement and sensation are seen as so "other," that there is no longer that sense of solidarity. It's both illuminating and discouraging to see how profound this disconnect is. The disconnect between a person with paralysis and his/her own body pales by comparison.
I am trying to take in this attitude that is becoming more acceptable of late. its seen as almost holy to face death rather than life - I know personally a man who was high level Quadriplegic, needing breathing at nights - when I used to see him and his wife and two little boys in town and how happy they were, to have each other it always reminded me of our family - but as well I know of one or two who have no one really close apart from the group home they live in - I know of few who would have wanted to "perform their duty to die" - Life to me is sacred - thats it. You can't have it both ways. The crime of murder or manslaughter is a crime mainly because human life is considered sacred by those with a spiritual belief or special by those without belief. There is no half way...
For a disabled person, life doesn't have to be more heroic or special than anyone elses' life - but there is this idea that some disabled can conquer Kilimanjaro, but the rest are just useless eaters... we are conned into thinking that unless a special effort is made, then their life is unworthy and why not just die. Just being ordinary seems not enough. My husband Don fought to stay well, fought to stay at home out of hospital, fought tradesmen who thought he must be stupid - (he was a tradesman himself ) Just to have an ordinary day was heroic enough - Understanding what this article is saying revolts me. In my mind nothing separates us - I could fall on my face tomorrow, down stairs, hit by a car, have disease and could find myself in the same situation as Don - there is not a person on this planet this could not happen to - can't understand why people don't see this.
I thank you as well for referring to Don and my book - am happy to send out a free copy to anyone in here who would like it - you will see that the Australian system and its attitudes are no different to those in the US or Canada
made a comment on the article itself - not published yet
>>> If that day ever came, it would provoke a grim reckoning, forcing Brooke to rethink — provided he was still capable of thinking — whether this is a life worth holding onto. <<<
CUE THE VULTURES!
>>> The possibility that he’d begun a true cognitive decline was averted, at least for the time being. <<<
AGAIN, MORE VULTURES!
Henig's personal viewpoint comes through loud and clear -
>> In the end, she decided to ignore the “Final Letter.”
...
how can a loving, well-meaning wife help but sometimes overstep in her eagerness to anticipate her husband’s needs?
>>>
So Peggy is IGNORING and OVERSTEPPING by not helping her husband die?
>>> It all sounded like an elaborate end-of-life placebo, an indication that in fact he was not in control, that he wasn’t being heard. Peggy laughed and did not disagree. <<<
NEITHER DID SHE AGREE.
Even though Peggy is in an academic ivory tower, her theories about "the right to die" mean nothing to her when her husband is involved. Unfortunately, Henig incriminates Peggy herself for not following through on the theories instead of incriminating the theories themselves as improper.
Author of article reveals more ignorance in an interview about the story: "About 80 percent of spinal-cord-injury patients eventually go home, and the great majority of them are cared for round-the-clock by their relatives — which puts a strain on even the most loving family, as well as an unfair economic burden."
http://6thfloor.blogs.nytimes.com/2013/07/22/behind-the-cover-story-robin-marantz-henig-on-making-end-of-life-decisions-and-changing-your-mind/
John, There are a number of errors in the NYT interview with Henig. Like you, I wonder why Henig or the NYT did not bother to do some basic fact checking. I suspect they assumed the Reeve Foundation stats are rock solid. As we know this is not the case.
Lynn: Thanks for your thoughtful and articulate response.
Bill: Thanks as always for your insight.
I have thought of an evolutionary explanation for why society does not support disabled people. Human mothers have evolved to provide conditional care to their offspring. If the mother lacks resources or the child is disabled the mother will abandon or neglect that child. See Infanticide: Comparative and Evolutionary Perspectives, Glenn Hausfater (Editor), Sarah Blaffer Hrdy (Editor)
While evolution explains the reason for neglect of disabled offspring a psychological mechanism is needed. That mechanism could be a feeling of disgust at a disabled body. This reaction would not just be limited to parents towards their offspring.
Jeffrey, As an anthropologist I realize the great importance of evolutionary theory. I am sure if we look at human history and disability I am sure some generalizations can be made with regard to the archeological record and the development of complex societies. However, in terms of contemporary disability, I am not sure what if anything evolutionary theory can add. Disability based discrimination is a social construct. Such bias has a long history but am hesitant to delve into a biological basis for disability based discrimination that is without question a social problem.
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