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Massive wall of text.
There have been a few requests to post the entire text of the sermon I gave today. There are changes from the various pieces I posted, but probably nothing earth-shaking.
Life or Death Situations
A sermon delivered at the First Unitarian Church of Baltimore
July 11, 2010
1. I want to tell you about a guy I used to know. I’ll call him Ray.
Ray was a gay man who lived in one of Baltimore’s rougher inner-city neighborhoods. From his earliest childhood, he told me, he was abused and rejected by his father and brothers for being effeminate. He grew up thinking that at the core of his being was a terrible flaw, and also – because he was a devout evangelical Christian – a terrible sin. When I met Ray (I was a clinical psychology intern who was assigned to be his therapist), he had no desire to live. He didn’t think he deserved to.
I worked with Ray for more than a year. As we worked together, he started to make peace with who he was, and to see himself as a person with value. He came to terms with his upbringing and moved beyond it. He found a new purpose. He wanted to live.
Now, at this point you may be wondering why I’m talking about Ray, in a sermon that is supposed to be about assisted suicide for people who are terminally ill or severely disabled. Here’s the piece of the story that I left out: when I met Ray, he was dying of AIDS.
His T-cell count had been utterly wiped out; he had no ability to mount a defense against infection. He was weak and frail. He suffered from painful nerve damage. And – because he didn’t really want to live – he had taken his various HIV medicines so halfheartedly that he was resistant to every drug on the market. He had no treatment options left.
That puts my brilliantly successful psychotherapy in a different light, doesn’t it? What I did was change Ray from a dying man who wanted to die, into a dying man who didn’t want to die. Did I help him or hurt him?
Ray and I struggled with that question. Why was he working so hard in therapy, if there would be no second chance at life afterward? As a deeply religious man, Ray came to believe that in some sense therapy was preparing his soul for the next world. I didn’t share his beliefs about a literal heaven with pearly gates and angel wings. But I also came to believe, deeply, that Ray’s reconciliation with himself at the end of life mattered. That it did make a difference – to Ray, to the people who knew him, to me, to the world – that Ray found peace before he died.
2. I didn’t know what I was doing when I worked with Ray. I knew how to treat depression, but I didn’t know how to do it without the promise of a better life afterward. Even when Ray was better he was still dying. He and I had to grope our way through that without an instruction manual.
A year or so after Ray’s death I heard a presentation by an Australian psychiatrist named David Kissane. Dr. Kissane identified a set of symptoms that are common among persons with terminal illness: hopelessness, the loss of a sense of meaning in life, a feeling of powerlessness, fear of loss of dignity, fear of burdening others. He called these symptoms "demoralization syndrome," and he said that they inevitably led to a desire to die or to commit suicide.
Feelings of demoralization may seem at first to be intrinsic to the process of dying. If you’re dying, why wouldn’t you be demoralized? But in fact, not everyone is. And the interesting thing is that Dr. Kissane was able to develop a psychotherapy that successfully treated demoralization syndrome. It was designed to help people reflect on the meaning of their life and on their legacy – and we’re not necessarily talking about anything huge; I remember that he said, "for some people, it’s that they have a really good borscht recipe, one they want to hand down to their family." He would help people craft a sense of their legacy, and in the process they would regain a sense that their life had meaning.
Repeatedly, he found that this kind of psychotherapy cured people of the desire for assisted suicide.
3. Dr. Kissane and his colleagues found that terminally ill or severely disabled people who want to commit suicide aren’t actually different from anyone else who wants to commit suicide. They are suffering. Their suffering is responsive to treatment. And when they receive appropriate treatment, they lose the desire for suicide.
What do those facts mean for the assisted suicide movement?
4. I’ve been talking to various people about this sermon, and one of them said to me very earnestly: "Rebecca, what you may not realize is that I’ve talked to some of these people and they do genuinely want to die. They have logical reasons."
I don’t think she knew what I do in my work life. I’m not a licensed psychologist – I do clinical research instead – but over the years I have talked to many, many suicidal people, and they always have reasons. Their reasons are always compelling to them, and sometimes they are persuasive enough that they sound pretty compelling to me too.
But I know some things about suicidal people. One of the things I know is that you will never meet a suicidal person who is completely unconflicted, completely without ambivalence. Those people are already dead before you have a chance to meet them. Anyone who lets another person know that they are suicidal, however certain they may sound, is ambivalent. There’s a part of that person – perhaps just a small part, a weak part – that wants to live.
My job, when I meet a suicidal person, is uncomplicated. It is my job to stand with the part of the person that wants to live.
I say "uncomplicated" although of course sometimes actually carrying out that job can be enormously complicated. What is uncomplicated is the part about knowing where my allegiance should be. I don’t try to wade into the person’s situation and figure out whether their problems are in fact hopeless. I don’t try to figure out, from what they are able to tell me about their prospects, whether their life is really worth living or whether they would be better off dead. The law, my professional ethics, my experience, and my personal values all tell me that my allegiance must be with life. That part is uncomplicated.
5. When the issue of assisted suicide comes up, I talk about the many suicidal people I have known. And people get annoyed with me: “Terminally ill and disabled people are different.”
How are they different? Why is it that there is literally no disaster, no tragedy, no collection of problems so severe that our society argues that a person ought to be allowed to die rather than suffer them – EXCEPT for physical degeneration? What makes being seriously ill or disabled different from every other bad thing that a person could possibly experience?
I’m going to give you a moment here to struggle with that question.
6. I have, of course, some ideas of my own about this.
We live in a society that values independence so much that parents of month-old babies are cautioned not to let them get too dependent on their mothers. A society that finds dependence so humiliating that "Depends" is the name of an adult diaper. We live in a society in which our worth is fundamentally seen as coming from what we do. "What do you do? What contributions can you make to society? I really want to do something with my life." Our abilities and our actions are the most important things about us… right?
So that when we cannot do, when our capabilities become disabilities, when we can no longer preserve the rugged independence that is the American ideal… we may not know anymore what we have left.
Or perhaps we don’t put much stock in the abilities of our bodies, but we feel that our primary value lies in our minds, our intellects. I might be able to accept the idea of using a wheelchair, but feel that if I could no longer put together an incisive argument, or read The New York Times, or balance my checkbook, my worth as a person would be degraded.
We may fall into this way of thinking - which some call ablism or disablism – about ourselves. And more gravely: when other people can no longer do, when they are not capable, when they face increasing dependency, it may seem to us, through the lens of our independence-and-action-prizing culture, as if it would be perfectly rational for them to conclude that such a life is not worth living. We may consider them to be in a separate category from other suicidal people – a category of people who should not be prevented.
7. Where do our UU values lead us, on these issues? Different members of our congregation have clearly found very different answers, and in fact we may perceive conflict between different UU values. Our Unitarian forebears were Puritans; from them we may have inherited a sense that work is what gives us value. Unitarians have long prized intellect and rationality; excellent values, but ones which may leave us vulnerable to losing our sense of worth if our intellect fades.
More generally, our Unitarian emphasis on rationality may mean that when someone presents an apparently rational argument that their life is not worth living, it is difficult for us to look deeper beneath the surface of that rational argument, to test the assumptions on which it rests.
And finally, although this may not be a conscious position, as religious liberals we may shy away from a position on assisted suicide which would appear to put us on the same side as the right-to-life movement and the Catholic Church. If they’re opposed to assisted suicide on religious grounds, doesn’t that automatically mean that we ought to favor it?
No. I want to call for us to re-examine this issue with Universalist hearts as well as Unitarian minds.
The First Principle reminds us that people have inherent worth. "We affirm the inherent worth and dignity of all people." Not because of their actions or capabilities, but as an integral part of their very being. Our UU values tell us that we do not have to do to have worth. We simply have to be. The First Principle directs us to honor the worth of all lives, however disabled – and to value the whole of our lives, not just the portions in which we are healthy, vital, and independent.
To me, the First Principle unequivocally says that when someone tells me that their life is worthless, I cannot agree with them. I must find a way to support and affirm their worth.
8. The Second Principle guides us toward justice, equity, and compassion in human relations. I want to spend time talking about this, because assisted suicide is often framed as the "compassionate" answer to suffering at the end of life. So let’s consider those problems in greater depth, and the solutions to which the Second Principle may lead us.
So far I’ve focused on the emotional and existential challenges of people facing death or severe disability: a sense of meaninglessness, hopelessness, loss of personal value. We know those are not the only challenges. People experience pain. They suffer. They fear that they will be a burden for relatives and friends, or that they will have to give up their freedom for a nursing home. They fear that they will be poorly treated when they are helpless. They fear leaving their spouses with tremendous medical debt, or wiping out the estates they hoped to leave to their children. These are not irrational fears. They are often very real. They may seem overwhelming when we, or our loved ones, are facing them.
What, then, is the just, equitable, and compassionate response to someone who says that "the circumstances of my life are intolerable"?
I look back at UU history and see that we have faced that question again and again. Our UU forebears have answered that question with their social action work for abolition, for civil rights, for women’s rights, for immigrants, for lesbian, gay, and transgendered people, for oppressed people all over the world. We have fought to relieve suffering and increase freedom and improve living conditions in the most desperate and hopeless of circumstances.
Only with this issue, as far as I can tell, have UUs ever been encouraged to come to the conclusion that when the conditions of someone’s life are intolerable, the just and compassionate response is to kill them.
That doesn’t make sense to me. To me that is a profound rejection of our responsibilities under the First and Second Principles, and a profound rejection of our denominational history as agents of transformative social change. I don’t know how we got here, except that on this issue we’ve gotten sucked into agreeing with helpless, demoralized, and oppressed people that their situation is truly hopeless.
I say to you that it is not. When faced with the suffering of people who are seriously disabled or dying, we have options beyond reframing "compassion" and "dignity" to mean fatal overdoses for those who lose hope.
9. Fully describing these options would be a book-length project, not a sermon-length one. But I want to quickly sketch an outline of some of the options we have for changing the circumstances of dying people, to help us move beyond the false dichotomy which offers us, on the one hand, a uselessly prolonged life full of pain and aggressive medical treatments, or on the other hand, suicide.
We can advocate for improved pain management. Half of all terminal cancer patients are not given sufficient treatment for pain – because providers are afraid to prescribe sufficient quantities, because patients and their families fear addiction, because the focus on curative treatment options outweighs the focus on symptom management, because controlled substance laws are more responsive to the War on Drugs than the needs of patients. We can advocate for changing laws to protect prescribers and families. We can insist that our own providers and those taking care of our families and friends treat pain as if it matters.
We can fight for better access to hospice services and palliative care. There are medical and psychosocial and pastoral experts in relieving suffering at the end of life, for patients and for their families, but many people are not aware of these experts or cannot access them. We can insist that these benefits not be considered optional, a boutique service for those with the best insurance or the greatest understanding of their options. We can insist that more people have access to therapies like Dr. Kissane’s, designed to relieve demoralization and loss of meaning at the end of life.
We can work to expand health care reform to protect the financial survival of families with critically ill or disabled members, so that no one feels that they should die before they drain their family’s assets.
We can promote systems that care for and support the families of dying people in both concrete and emotional ways, so that no one feels that they ought to die to relieve the suffering of those around them.
We can support the disability rights movement and its push for independent living – giving people more options for personal care services and assistive technology to enable them to preserve maximal independence as their physical abilities decline. A concrete example is the fight to allow Medicare and Medicaid dollars to be spent on in-home care in states where they currently only pay for nursing homes.
We can address ablism wherever it arises in our religious movement, in our communities, in our culture, and in our hearts. We can – and we should, and we must – question assumptions about the lesser value of disabled lives whenever we encounter them.
Finally, we can continue to protect the right to refuse medical care. We can refuse to blur the line between stopping useless and painful medical treatments, and actively procuring or advocating euthanasia. Each person has the right to make their own decisions about when to stop pursuing curative medical treatment and shift their focus to symptom care and pain relief. Each person has the right to expect their families and care providers to honor their decisions about future treatment, if they are no longer able to make decisions themselves.
But no person has the right to ask that society decide when their life no longer has value. And that is what assisted suicide asks us to do: to determine that although for most people suicide is an irrational decision, for others it is acceptable because their lives truly are not worth living. Those judgments will inevitably affect not just the person who lives or dies, but others who live in vulnerable conditions – as well as those of us who are asked to make such judgments, or to stand by in approval or silence.
I’d like to bring us back for a moment to the story of my friend and client Ray, whose profound emotional transformation defied all rational expectation. The end of his story is of course inevitable: Ray died of AIDS. He lived a year longer than his doctors predicted, but in the end an opportunistic infection carried him off. None of us, including Ray, could have predicted what that last year of life would mean to him. He died a changed person. He changed me, too.
What did Ray teach me, and what do I hope to persuade you? That "death with dignity" involves affirming dying people’s worth as human beings – their absolute worth, regardless of the assistance they may need or the actions they can no longer perform. That compassion for the dying involves fighting the conditions which make their lives painful, acting to reduce their suffering and isolation and their often legitimate fears. And that always, when they struggle with demoralization and doubt, we must stand with them on the side of life.
Life or Death Situations
A sermon delivered at the First Unitarian Church of Baltimore
July 11, 2010
1. I want to tell you about a guy I used to know. I’ll call him Ray.
Ray was a gay man who lived in one of Baltimore’s rougher inner-city neighborhoods. From his earliest childhood, he told me, he was abused and rejected by his father and brothers for being effeminate. He grew up thinking that at the core of his being was a terrible flaw, and also – because he was a devout evangelical Christian – a terrible sin. When I met Ray (I was a clinical psychology intern who was assigned to be his therapist), he had no desire to live. He didn’t think he deserved to.
I worked with Ray for more than a year. As we worked together, he started to make peace with who he was, and to see himself as a person with value. He came to terms with his upbringing and moved beyond it. He found a new purpose. He wanted to live.
Now, at this point you may be wondering why I’m talking about Ray, in a sermon that is supposed to be about assisted suicide for people who are terminally ill or severely disabled. Here’s the piece of the story that I left out: when I met Ray, he was dying of AIDS.
His T-cell count had been utterly wiped out; he had no ability to mount a defense against infection. He was weak and frail. He suffered from painful nerve damage. And – because he didn’t really want to live – he had taken his various HIV medicines so halfheartedly that he was resistant to every drug on the market. He had no treatment options left.
That puts my brilliantly successful psychotherapy in a different light, doesn’t it? What I did was change Ray from a dying man who wanted to die, into a dying man who didn’t want to die. Did I help him or hurt him?
Ray and I struggled with that question. Why was he working so hard in therapy, if there would be no second chance at life afterward? As a deeply religious man, Ray came to believe that in some sense therapy was preparing his soul for the next world. I didn’t share his beliefs about a literal heaven with pearly gates and angel wings. But I also came to believe, deeply, that Ray’s reconciliation with himself at the end of life mattered. That it did make a difference – to Ray, to the people who knew him, to me, to the world – that Ray found peace before he died.
2. I didn’t know what I was doing when I worked with Ray. I knew how to treat depression, but I didn’t know how to do it without the promise of a better life afterward. Even when Ray was better he was still dying. He and I had to grope our way through that without an instruction manual.
A year or so after Ray’s death I heard a presentation by an Australian psychiatrist named David Kissane. Dr. Kissane identified a set of symptoms that are common among persons with terminal illness: hopelessness, the loss of a sense of meaning in life, a feeling of powerlessness, fear of loss of dignity, fear of burdening others. He called these symptoms "demoralization syndrome," and he said that they inevitably led to a desire to die or to commit suicide.
Feelings of demoralization may seem at first to be intrinsic to the process of dying. If you’re dying, why wouldn’t you be demoralized? But in fact, not everyone is. And the interesting thing is that Dr. Kissane was able to develop a psychotherapy that successfully treated demoralization syndrome. It was designed to help people reflect on the meaning of their life and on their legacy – and we’re not necessarily talking about anything huge; I remember that he said, "for some people, it’s that they have a really good borscht recipe, one they want to hand down to their family." He would help people craft a sense of their legacy, and in the process they would regain a sense that their life had meaning.
Repeatedly, he found that this kind of psychotherapy cured people of the desire for assisted suicide.
3. Dr. Kissane and his colleagues found that terminally ill or severely disabled people who want to commit suicide aren’t actually different from anyone else who wants to commit suicide. They are suffering. Their suffering is responsive to treatment. And when they receive appropriate treatment, they lose the desire for suicide.
What do those facts mean for the assisted suicide movement?
4. I’ve been talking to various people about this sermon, and one of them said to me very earnestly: "Rebecca, what you may not realize is that I’ve talked to some of these people and they do genuinely want to die. They have logical reasons."
I don’t think she knew what I do in my work life. I’m not a licensed psychologist – I do clinical research instead – but over the years I have talked to many, many suicidal people, and they always have reasons. Their reasons are always compelling to them, and sometimes they are persuasive enough that they sound pretty compelling to me too.
But I know some things about suicidal people. One of the things I know is that you will never meet a suicidal person who is completely unconflicted, completely without ambivalence. Those people are already dead before you have a chance to meet them. Anyone who lets another person know that they are suicidal, however certain they may sound, is ambivalent. There’s a part of that person – perhaps just a small part, a weak part – that wants to live.
My job, when I meet a suicidal person, is uncomplicated. It is my job to stand with the part of the person that wants to live.
I say "uncomplicated" although of course sometimes actually carrying out that job can be enormously complicated. What is uncomplicated is the part about knowing where my allegiance should be. I don’t try to wade into the person’s situation and figure out whether their problems are in fact hopeless. I don’t try to figure out, from what they are able to tell me about their prospects, whether their life is really worth living or whether they would be better off dead. The law, my professional ethics, my experience, and my personal values all tell me that my allegiance must be with life. That part is uncomplicated.
5. When the issue of assisted suicide comes up, I talk about the many suicidal people I have known. And people get annoyed with me: “Terminally ill and disabled people are different.”
How are they different? Why is it that there is literally no disaster, no tragedy, no collection of problems so severe that our society argues that a person ought to be allowed to die rather than suffer them – EXCEPT for physical degeneration? What makes being seriously ill or disabled different from every other bad thing that a person could possibly experience?
I’m going to give you a moment here to struggle with that question.
6. I have, of course, some ideas of my own about this.
We live in a society that values independence so much that parents of month-old babies are cautioned not to let them get too dependent on their mothers. A society that finds dependence so humiliating that "Depends" is the name of an adult diaper. We live in a society in which our worth is fundamentally seen as coming from what we do. "What do you do? What contributions can you make to society? I really want to do something with my life." Our abilities and our actions are the most important things about us… right?
So that when we cannot do, when our capabilities become disabilities, when we can no longer preserve the rugged independence that is the American ideal… we may not know anymore what we have left.
Or perhaps we don’t put much stock in the abilities of our bodies, but we feel that our primary value lies in our minds, our intellects. I might be able to accept the idea of using a wheelchair, but feel that if I could no longer put together an incisive argument, or read The New York Times, or balance my checkbook, my worth as a person would be degraded.
We may fall into this way of thinking - which some call ablism or disablism – about ourselves. And more gravely: when other people can no longer do, when they are not capable, when they face increasing dependency, it may seem to us, through the lens of our independence-and-action-prizing culture, as if it would be perfectly rational for them to conclude that such a life is not worth living. We may consider them to be in a separate category from other suicidal people – a category of people who should not be prevented.
7. Where do our UU values lead us, on these issues? Different members of our congregation have clearly found very different answers, and in fact we may perceive conflict between different UU values. Our Unitarian forebears were Puritans; from them we may have inherited a sense that work is what gives us value. Unitarians have long prized intellect and rationality; excellent values, but ones which may leave us vulnerable to losing our sense of worth if our intellect fades.
More generally, our Unitarian emphasis on rationality may mean that when someone presents an apparently rational argument that their life is not worth living, it is difficult for us to look deeper beneath the surface of that rational argument, to test the assumptions on which it rests.
And finally, although this may not be a conscious position, as religious liberals we may shy away from a position on assisted suicide which would appear to put us on the same side as the right-to-life movement and the Catholic Church. If they’re opposed to assisted suicide on religious grounds, doesn’t that automatically mean that we ought to favor it?
No. I want to call for us to re-examine this issue with Universalist hearts as well as Unitarian minds.
The First Principle reminds us that people have inherent worth. "We affirm the inherent worth and dignity of all people." Not because of their actions or capabilities, but as an integral part of their very being. Our UU values tell us that we do not have to do to have worth. We simply have to be. The First Principle directs us to honor the worth of all lives, however disabled – and to value the whole of our lives, not just the portions in which we are healthy, vital, and independent.
To me, the First Principle unequivocally says that when someone tells me that their life is worthless, I cannot agree with them. I must find a way to support and affirm their worth.
8. The Second Principle guides us toward justice, equity, and compassion in human relations. I want to spend time talking about this, because assisted suicide is often framed as the "compassionate" answer to suffering at the end of life. So let’s consider those problems in greater depth, and the solutions to which the Second Principle may lead us.
So far I’ve focused on the emotional and existential challenges of people facing death or severe disability: a sense of meaninglessness, hopelessness, loss of personal value. We know those are not the only challenges. People experience pain. They suffer. They fear that they will be a burden for relatives and friends, or that they will have to give up their freedom for a nursing home. They fear that they will be poorly treated when they are helpless. They fear leaving their spouses with tremendous medical debt, or wiping out the estates they hoped to leave to their children. These are not irrational fears. They are often very real. They may seem overwhelming when we, or our loved ones, are facing them.
What, then, is the just, equitable, and compassionate response to someone who says that "the circumstances of my life are intolerable"?
I look back at UU history and see that we have faced that question again and again. Our UU forebears have answered that question with their social action work for abolition, for civil rights, for women’s rights, for immigrants, for lesbian, gay, and transgendered people, for oppressed people all over the world. We have fought to relieve suffering and increase freedom and improve living conditions in the most desperate and hopeless of circumstances.
Only with this issue, as far as I can tell, have UUs ever been encouraged to come to the conclusion that when the conditions of someone’s life are intolerable, the just and compassionate response is to kill them.
That doesn’t make sense to me. To me that is a profound rejection of our responsibilities under the First and Second Principles, and a profound rejection of our denominational history as agents of transformative social change. I don’t know how we got here, except that on this issue we’ve gotten sucked into agreeing with helpless, demoralized, and oppressed people that their situation is truly hopeless.
I say to you that it is not. When faced with the suffering of people who are seriously disabled or dying, we have options beyond reframing "compassion" and "dignity" to mean fatal overdoses for those who lose hope.
9. Fully describing these options would be a book-length project, not a sermon-length one. But I want to quickly sketch an outline of some of the options we have for changing the circumstances of dying people, to help us move beyond the false dichotomy which offers us, on the one hand, a uselessly prolonged life full of pain and aggressive medical treatments, or on the other hand, suicide.
We can advocate for improved pain management. Half of all terminal cancer patients are not given sufficient treatment for pain – because providers are afraid to prescribe sufficient quantities, because patients and their families fear addiction, because the focus on curative treatment options outweighs the focus on symptom management, because controlled substance laws are more responsive to the War on Drugs than the needs of patients. We can advocate for changing laws to protect prescribers and families. We can insist that our own providers and those taking care of our families and friends treat pain as if it matters.
We can fight for better access to hospice services and palliative care. There are medical and psychosocial and pastoral experts in relieving suffering at the end of life, for patients and for their families, but many people are not aware of these experts or cannot access them. We can insist that these benefits not be considered optional, a boutique service for those with the best insurance or the greatest understanding of their options. We can insist that more people have access to therapies like Dr. Kissane’s, designed to relieve demoralization and loss of meaning at the end of life.
We can work to expand health care reform to protect the financial survival of families with critically ill or disabled members, so that no one feels that they should die before they drain their family’s assets.
We can promote systems that care for and support the families of dying people in both concrete and emotional ways, so that no one feels that they ought to die to relieve the suffering of those around them.
We can support the disability rights movement and its push for independent living – giving people more options for personal care services and assistive technology to enable them to preserve maximal independence as their physical abilities decline. A concrete example is the fight to allow Medicare and Medicaid dollars to be spent on in-home care in states where they currently only pay for nursing homes.
We can address ablism wherever it arises in our religious movement, in our communities, in our culture, and in our hearts. We can – and we should, and we must – question assumptions about the lesser value of disabled lives whenever we encounter them.
Finally, we can continue to protect the right to refuse medical care. We can refuse to blur the line between stopping useless and painful medical treatments, and actively procuring or advocating euthanasia. Each person has the right to make their own decisions about when to stop pursuing curative medical treatment and shift their focus to symptom care and pain relief. Each person has the right to expect their families and care providers to honor their decisions about future treatment, if they are no longer able to make decisions themselves.
But no person has the right to ask that society decide when their life no longer has value. And that is what assisted suicide asks us to do: to determine that although for most people suicide is an irrational decision, for others it is acceptable because their lives truly are not worth living. Those judgments will inevitably affect not just the person who lives or dies, but others who live in vulnerable conditions – as well as those of us who are asked to make such judgments, or to stand by in approval or silence.
I’d like to bring us back for a moment to the story of my friend and client Ray, whose profound emotional transformation defied all rational expectation. The end of his story is of course inevitable: Ray died of AIDS. He lived a year longer than his doctors predicted, but in the end an opportunistic infection carried him off. None of us, including Ray, could have predicted what that last year of life would mean to him. He died a changed person. He changed me, too.
What did Ray teach me, and what do I hope to persuade you? That "death with dignity" involves affirming dying people’s worth as human beings – their absolute worth, regardless of the assistance they may need or the actions they can no longer perform. That compassion for the dying involves fighting the conditions which make their lives painful, acting to reduce their suffering and isolation and their often legitimate fears. And that always, when they struggle with demoralization and doubt, we must stand with them on the side of life.
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I hope you'll send it on to Doreen for inclusion on the First U website too!
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Bruce
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"My job, when I meet a suicidal person, is uncomplicated. It is my job to stand with the part of the person that wants to live."
The disabled person in the book, Phyllis, clearly has part of her (a huge part!) that wants to live. In the end, NO ONE (and especially not the protagonist) is willing to stand with that part of her. Phyllis is a girl living in an iron lung; she has incredible physical limitations and yet we see her living a rewarding, interesting, and meaningful life before the protagonist decides that she's evil and manipulative and stops talking to her. (She concludes that Phyllis is evil after she spies on an unsuccessful rehabilitation attempt, and it was blindingly clear to me -- though not, I think, to the author -- that she flips out from the shock of seeing Phyllis's disabled body, which has previously been hidden from her by the iron lung. She doesn't know how to deal with her own fear, so she turns it against her friend.)
This book was published in May. This year. It's a brand new book. ARGH doesn't even begin to cover it.
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