Two powerful op-ed pieces in today’s New York Times help me to clarify my disquiet with the Obama presidency.
The first by Amy Wilentz, explains the origins of the concept of the “Zombie.” The life of the slave in Haiti was so brutal and unbearable that the slaves often preferred suicide, which was imagined as a return to Africa (lan guinée), a phrase that in Creole even today means heaven. Against this threat, the masters devised and played on the idea of the Zombie, a species of living dead, who would never be able to return to Africa and instead would perform slave labor forever.
The second piece by Ben Mattlin opposes the Massachusetts assisted suicide law, to be voted on next week. Mattlin was born with spinal muscular atrophy. He has never stood, or walked, or had much use of his hands. Roughly half the infants born with this condition die by the age of two, but Mattlin is nearly fifty and, as he writes, “a husband, father, journalist and author.” Living his whole life so close to death he recounts the many times well-meaning doctors and relatives wanted to “spare” him, and the state. No one chooses suicide in a vacuum he notes.
The two stories make the same point: the priority of the human spirit over the body. Mattlin writes so beautifully that it is hard to imagine the wracked body from which his words emanate. It is in good part to affirm the beauty of the human spirit– in other words, of freedom– that most Americans, and citizens of other countries, gladly spend so much money on keeping the very ill, and the very old, alive. Wilentz’s story teaches the same lesson from the opposite point of view. Without a spirit, without freedom, the body is worthless. If we give up our understanding of the priority of the spirit over the body we tend to become zombies ourselves.
That is why the entire neo-liberal mentality, which reduces human beings to their “cash value” is so deeply pernicious. Neo-liberalism is the triumph of the quantitative, the superficial, the merely external over the inner, the spiritual, the realm of freedom. And that is why Obama lost me with the following exchange in the New York Times, April 9, 2009:
Reporter: “It’s going to be hard for people who don’t have the option of paying for it.”
Obama: “So that’s where I think you just get into some very difficult moral issues. But that’s also a huge driver of cost, right? I mean, the chronically ill and those toward the end of their lives are accounting for potentially 80 percent of the total health care bill out here.”
As to how to deal with the problem, Obama urged “some independent group that can give you guidance.”
I recognize that Obama’s point of view is superior to Romney’s castigation of the 47% but at the level of values, this is not a choice I am happy about making.
I worry about “mission creep”: the right to die becoming the duty to die. That’s what I hear is the tenor and direction of Obama’s (and others) remarks.
As a person with a disability who loves life and also fully supports legalizing assisted suicide and the right to die, I have long been horrified to find the disability rights movement often aligned with conservative Christian forces like those that wanted to keep Terry Shivo alive forever. Now Eli Zaretsky of all people has apparently joined the tea party! What next? I fully support Ben Mattlin’s right to live, but I also fully support someone else’s right to die. People like Eli should watch the movie How to Die in Oregon about the struggle to legalize the right to die here. It might open your eyes. And as for the high costs of healthcare, this is a real problem, and a huge part of costs apparently do come from keeping people alive at the end of life. It seems to me that death is a natural part of life. Does it really make sense to spend huge amounts of money to keep a person in their 90’s who is bedridden and dying alive for another week or another month? Personally, I’m not afraid of death. I love life, but when the time comes, I’m ready to go. I have a living will requesting people to pull the plug. Not because I don’t value life or the human spirit. Not because I’m not spiritual. But perhaps because I am.
I do understand that some religious people feel it is morally wrong to end life under any circumstances (no abortion, no stem cell research, no assisted suicide, no right to die), and this view is certainly anyone’s right to have and to live by, but please don’t force the rest of us to go along with these (imo backward) religious views and please let’s don’t compare Obama to a vampire and assisted suicide to what happened to slaves in Haiti! The doctor offered my father the change to snuff me when I was born with a disability, so I know the dangers of people thinking we’d be better off dead, and of course I don’t want some Nazi approach that kills old people and people with disabilities (and I’m old, too, by the way). But that’s not what legalizing assisting suicide or right to die is proposing, and it’s not what Obama is proposing (except in the tea party’s absurd and misleading accusations of Death Panels). Again, please see the movie How to Die in Oregon.
I worked for a number of years in the Disability Rights Movement and the Independent Living Movement, was in the 504 occupation in San Francisco to pass the first civil rights legislation for people with disabilities years ago, and I know a number of severely disabled people like Ben Mattlin who are living rich, creative, meaningful lives – so ofcourse I don’t want everyone with a disability to be killed, which seems to be the irrational fear of many in the disabled community about assisted suicide. I just feel it’s up to the individual to decide what conditions they can live with and what conditions they can’t live with — and I’ve never understood why any suicide should be illegal, although certainly many are regrettable. So I’m one spiritual person over the age of 60 with a lifelong disability who loves life urging the people of Massachusetts to vote in favor of legalizing assisted suicide. What in the world does this have to do with “the triumph of the quantitative, the superficial, the merely external over the inner, the spiritual, the realm of freedom”? I really wish all you religious zealots would keep your hands off my body — let’s please keep abortion safe and legal and legalize the right to die. If these things are illegal, trust me, women will still get abortions and people in excruciating pain will still kill themselves, but instead of it happening in a safe and humane way, it will be coat hangers and slashed wrists. Why is that more spiritual? I really, honestly don’t get it, Eli!
Joan, thank you for very moving, powerful statements. I fully support assisted suicide. The idea of forcing someone to stay alive when they dont want to is repulsive to me. I am afraid that in writing in a terse, lapidary style I was is leading on this point and I apologize. My impression is that Ben Mattlin also supports assisted suicide. He had highly specific objections to wording in the Massachusetts law, but he called himself a full-throated liberal on this point, as I call myself. The problem I was trying to get at is different.
Assisted suicide is a choice, but what is a choice. For a person to truly choose suicide, they should be surrounded by a community willing to make the sacrifices (financial and emotional) necessary to care for them. They should not feel that they are an unwanted burden. This is not simply a matter of personal values. It involves the society’s stand on questions of the value of human life.
My point was that a neo-liberal society is like a slave society– it is organized around the bottom line. The slaveowners treat the slaves as objects to be exploited. This is essentially the same mentality as the banks, economists, lawyers, etc of our time.
Obama is the president His remark was aimed to explain his health care law. What are the values governing that law? The value should be to provide health care to everyone. Of course, we may have to make hard economic decisions about what we can or cannot afford, but that is not a value. The neo-liberal however– and obama most certainly is a neo-liberal– is someone who thinks that cost-benefit analysis is the value. That OBama even TALKED about the possibility that we are spending too much on the very old, or the chronically ill, was a horrible mistake in my view. It left the moral questions open to their manipulation by the Republicans, and that is what gave birth to the Tea Party. I hope this provides a little clarification.
Your comments hit painfully close to home.
I would like to share my nightmarish experiences of the past year concerning my beloved 94 year old mother, and want to preface them by saying that we are both very strong Obama supporters and lifelong progressive Democrats.
Last year, I took my mom to the ER after she had fallen. I was told,”She’s fine. She hasn’t broken anything, so she can go home.”
NO,SHE WAS NOT “FINE”.SHE HAD UNDERLYING MEDICAL ISSUES,
OF WHICH THEY WERE AWARE, WHICH WERE GRADUALLY BECOMING WORSE, AND WAS NOT RECEIVING ANY TREATMENT FOR THEM BECAUSE THE MEDICAL PROFESSIONALS WHOM WE TRUSTED OPTED TO CONCEAL HER TRUE CONDITION FROM US FOR MONTHS SO THAT THEY WOULD NOT BE FORCED TO PROVIDE TREATMENT TO PROLONG HER LIFE,AS IT IS NOT A DEEP DARK SECRET THAT THE INSURANCE COMPANIES DO NOT LIKE HAVING TO PAY TO KEEP ELDERLY PEOPLE ALIVE.
I consider it a miracle that she is still alive, though in a severly weakened state. That is only because I was able to get her back to the ER before she had completely expired, but in such poor condition that they had no choice but to help her, or I could have sued them.
The decision of whether or not to pursue treatment belonged to my mother and me, and the people who are supposedly in the business of saving lives took it away from us until it was almost too late, and then, only because they feared the possibility of a lawsuit.
My mom is not a “death with dignity” type of person, She is an “I’m going out of here kicking and screaming” type of person, and that choice needs to be honored
Had it been up to the hospital,doctors, and most of all, the insurance company, she would not have lived to vote(by absentee ballot ) for the President.
thank you so much for sharing this story
Eli, Thank you for clarifying your position. You are a voice I very much appreciate and respect, which is part of what made your article so troubling to me. And Lana, I appreciate your story. I accompanied my 95 year old mother to the ER on several occasions as well and got the opposite treatment, more tests than were probably needed, but I fully agree that everyone’s choices should be respected and that our profit-driven healthcare system is a disaster that takes many different forms. And I fully agree with you Eli that the economic and political system in this country is deeply flawed and that Obama is as much a part of the problem as he has been a part of the solution (although I voted for him both times). I do think we need to look to some degree at cost-benefit analysis in healthcare — as I understand it, they do that in other countries that offer universal healthcare — there has to be some weighing of what can be covered and what can’t be covered, and obviously everyone will have different opinions and real-life will always offer up individual cases where the agreed-upon rules will prove unfortunate and inappropriate, but still, these are conversations it seems to me we need to have. As I recall, Obama was suggesting nothing more than that and also something about paying for end-of-life conversations between doctors and patients about options, and all of that got twisted into scary talk about death panels out to kill grandma. For all of Obama’s flaws from a progressive point of view, I do think he actually favors universal single-payer healthcare and does care about providing healthcare to everyone. And I do think death is a perfectly natural part of life, not something to fear and resist at all costs. Anyway, I appreciate the discussion.
From my experience, doctors and nurses today are trained to discourage and even prevent
medical technology from prolonging the lives of those whose “quality of life” is not up to their own
standard. My mother wanted to live, even after a stroke took her power of speech and swallowing.
It was a rare professional who could agree with her choice. One doctor called her “non-responsive,”
although when this doctor came into the room, my mother would close her eyes and turn her head
away, indicating her response. She knew that this doctor wanted to “pull the plug.” I also came under attack because I supported my mother’s wishes. The first thing the ER doctor wanted to discuss with me, was
that it was “time to end my mother’s life.” This happened in a general hospital, and also in a nominally Orthodox Jewish hospital.
My mother lived three years longer than the “death sentence” pronounced for her after her stroke. It was not the quality of life she ideally wanted, but it was life, and she wanted to live.
What is so strange with the idea that people use more medical care at the end of their lives? That’s when you need it if you are sick, even if you are not old. Medicare for all would be a fairer and cheaper system. The overhead for Medicare is peanuts compared to the 25 percent or more of the insurance companies.
My mother, a blithe spirit who loved life more passionately than anyone I ever met, was ready to go at the end. At 95, people would say to her, “You’re going to live to be 100,” and she’d say, “Oh God, I hope not!” She’d had a great life and she loved every day she had, but now she was ready to go. The party was over and it was time to go home. She had no fear of death. She died naturally and peacefully, at home, surrounded by loved ones. I know some people want to live as long as possible, even if they are in a vegetative state and need to be kept alive by machines, and to me this is incomprehensible. Often we spend HUGE amounts of money keeping people alive for a few more weeks, often in hideous pain, because relatives don’t want to let go, or because the person is terrified to die. We’re kinder to our pets. I’m not saying your mother was in a vegetative state, Marje, or that she should have been allowed to die against her wishes and yours, or that her last 3 years were not worth living, but I’m glad doctors now have the courage and the willingness to at least bring this up with patients and their families. Yes, medicare for all, but even then, there is not infinite money available.
Hello Joan:
I don’t think you have to worry about the courage or willingness of today’s doctors to bring up
this question. In two different hospital systems, pulling the plug was the first thing they talked about!
The residents, who were new at this, were taught what to say to relatives of very sick people, and
seemed to have no problem at all telling me that the plug should be pulled.
As for the cost: my mom had paid for good medical insurance for decades. If we as a nation had a population that was employed at good wages and paying taxes, Medicare and Social Security could pay for themselves.
People in so-called vegetative states can wake up. Many of them are “there” locked inside. I am certain that in the future medical research will figure out ways to bring people back, and to heal
many diseases now considered terminal. We need to invest more in such research.
The danger I see is that when you start deciding whose life is not worth living, where do you stop? The Nazis early on began to kill the elderly, the disabled, and the mentally ill, as unworthy lives and a drain on the budget. This is what troubles me.
One detail I omitted from my story is that, when I finally brought my mom back to the ER with one foot in the grave, and the hospital had no choice but to help her, unless they had wanted to become party to a lawsuit, the doctors and administrators were chasing after me like bill collectors to try to pressure me into signing a DNR form, and failing that, to “pull the plug” so that she would not be too great of a financial expendure for their buddies, the insurance company
Perhaps my experience has made me cynical, but I tend to think that their actions, at least in my mom’s case(which I am sure was very far from being an isolated incident).had much more to do with “greed” than with “courage” and/or “integrity”
This sounds hard-hearted, but medical resources, like everything else, are limited. Do we put resources into the elderly who have a terminal condition that can’t be reversed or do we put them into people who have no health care at all or have a better shot at a completely recovery?
By the way, before Medicare, half of all seniors had no health insurance and if Medicare is voucherized, prolonging life will become a moot point. Few will have the financial resources for long term medical care.
Take your financial concerns up with the hospital and medical professionals who lied to us about my mom’s condition for months, instead of giving her the help that she needed in a timely manner when her issues were still on a low level.
If they had acted with honesty, intergrity, and humanity, not only would she still be OK, but it would have cost the insurance company a lot less money in the long run.
However, the hospital had no idea that the situation would play out as it eventually did. They didn’t forsee that I would manage to get my mom back to the ER when she was still alive, and they would have to help her..
I am sure they expected that she would just go home and die there in 6 or 7 months, or whenever her oxygen supply ran out.
Sorry, but I don’t agree that people who are younger , stronger, or more affluent are more deserving of medical care than my mom, who paid taxes and costly insurance premiums for years, while very rarely availing herself of medical services until she was in her mid ”80’s
Moreover,when my mother was younger, our house was like a hospital because she was caring for my grandmother, who was bedridden, my stepfather, who had cancer, and my uncle, who was in and out of hospitals. What kind of world is it which will tell her,”You’re 94, and you’ve lived long enough. Timr for you to die, even if you don’t want to, because it may be too expensive to keep you alive.”
Physician aid in dying has been legal here in Oregon for the past 18 years. During that time, NONE of the slippery slope scenarios have come to pass.
Instead, people with terminal illnesses, their families and loved ones have a compassionate, humane choice when it comes to the end of their lives.
Those who speculate on dark, ulterior motives behind the intent and use of this law are the worst kind of pessimists who would let their negative outlooks toward others prevent terminally ill people from having some control and relief when it comes to their own life and death.
yes, thats my impression too. I am sorry if I gave the impression that I oppose physician aid in dying, My purpose was to address the broader cultural assumptions that we bring to health care provision,
I completely support patient choice.I do not support the medical establishment , insurance companies, or anyone else playing God, and deciding who should live, and who should die.I agree with the writer who likened it to Nazi behavior.
And the possibility of a voucherized Medicare system is all the more reason why my fellow progressives need to get out there and reelect the President today !
Lana: I am not passing judgment on you or your mother’s situation. The concern is not my own personal financial concern but the financial concern of all of us. I was looking at the big picture, not a specific situation.
From what I read, Medicare/Medicaid combined will consume 40% of Federal revenues in 25 years (if I can believe what I read these days). What it pays out will exceed tax receipts, even if the Bush cuts are allowed to expire. Imagine if they aren’t allowed to expire and we put another two trillion into the defense budget and extend the cuts as Romney wants to do.
So the issue for me is how do we deal with this situation of Medicare not having enough money? How do we allocate resources? In fact, how do we deal with the issue of some younger people paying substantial increases in health premiums year after year? In time, how many can afford health insurance at all?
Most of the bankruptices in the U.S. are medical bankruptcies and among people who have medical insurance. Their bills were so overwhelming that their policies didn’t pay out enough.
I believe Medicare should be open to everybody and not tied to employment. I’m for taking a look at major industrialized countries where the system works–maybe we can learn from it– and one that controls prices and doesn’t allow these wild increases in health care every year. How we accomplish this in a country that yells “socialism” over any government involvement is another matter. So here we sit with a for-profit insurance system and Medicare which isn’t even allowed to negotiate drug prices because it would interfere with profits.
Here in NYC, we have an excellent program, “Healthy NY”, which allows people with low and moderate incomes to purchase health insurance at rates comparable to COBRA.
I have been on this program since my COBRA ran out in 2009.
I have not been able to obtain a full-time job with benefits since the organization for which I was working closed up in 2007.All I have had since are multiple part-time jobs with no benefits, while I struggle to pay for my own health insurance.
Perhaps our NY program could become a model for the rest of the nation, and unable those of us who don’t have employer-based insurance, are not yet old enough for Medicare, and not poor enough for Medicaid , to be protected, while not sacrificing the most vulnerable among us, the elderly,and the disabled.