At the end of 2009 my husband & I flew from our then home in southern France to San Francisco, California to care for his beloved sister, dying from stage 4 ovarian cancer. We had spent a month in the summer with her already & knew we would have to come back. We cared for her for 6 weeks, helping her daughter, our niece & with the amazing guidance of wonderful hospice nurses & we were with Elizabeth when she died. The whole experience was both tragic & sublime. God was with us, gifting us with ever more of His patience & compassion for His beloved daughter, as we performed every necessary bodily service for our loved one at the end of her life. She accepted our care with the dignity & grace which is God given & belongs to every human being without exception & was grateful for us. The experience enriched me spiritually & I conside it one of the most fulfilling, beautiful & uplifting gifts God has given me in my life. To allow others to do this for me one day might feel hard because my pride tells me it is undignified but a human being cannot lose their dignity ever & to deprive someone of caring for me is to deprive them of the gifts I received when giving care. To be present & to help ease a person's natural transition into the next world is a massive privilege, an honour. It is a moment when heaven & earth touch, when the presence of angels & God Himself can be felt & it leaves one forever changed.
I see a lot of help exchanged among moms. The grandma/retiree age women often want to help babysit and sometimes are in charge of the meal trains; moms who are still actively mothering often help with meal trains as well. We kind of all know that postpartum is a time of great need. We've all been there and we're all mutually understanding of this. In my parish moms group, we've been talking about how to support each other through pregnancy as well. We haven't gotten anything formal going (although we have been offering mutual help informally sometimes), but I would love to have pregnancy help as a standard thing. One, it's just a time when you need help and most people don't instinctively bring food over during that time, and two, if a woman loses her baby, it would be great if she already has a group of women who have been helping her through morning sickness, who know about the baby and have been caring for her already. That just seems like a better situation in which to grieve.
I have often made a point of asking for help, in part because I do need help sometimes, and in part just to normalize it.
Love this! Placing individual autonomy as the highest ordering principle of human life also creates widespread denial of the ways in which even the most able-bodied adults are dependent on one another. Many young adults call themselves "independent" when they cease relying on people they have close relationships with (e.g. their parents) for food and shelter, but they still depend on myriad interconnected systems and the people they comprise, from farmers to truck drivers to engineers and more. Unless we live completely off grid growing and hunting our own food, we're not independent of other people. Just because those people are nameless and faceless to us doesn't mean they don't exist. Singling out those who require more intensive care than most -- whether from these systems or our friends and family -- as uniquely burdensome and thus undignified is hypocritical.
I, too, read that NYT article with deep unease... I've had a neurological illness/disability for seven plus years, and spent many of those years in excruciating pain. There were times when my pain was so bad, I understood why a person would prefer nonexistence. I still understand, though to my mind the good response isn't to end the life but to work to ameliorate the pain. Thankfully, MAiD wasn't available to me, and I now have more pain-free days than not. Thankfully, too, my husband didn't see care as demeaning but the way of love.
Thank you Leah for this; I have always considered myself against euthanasia but not when it includes myself! I bought the proverbial theme of not being a burden to someone else ever in my own life, yet I am a nurse and thrive on caring for others. What a juxtaposition in my mind.
If this is relevant to your first question (and sorry for this huge thing if not!), college tutoring programs have a complicated relationship with the fact that, in theory, we're there to enrich *everyone's* experience (whether they're actually struggling in a class, or just want to make sure they continue in the success they're already having, or somewhere in between), but in usual actuality, the students we're most likely to see are the ones who truly need help on a particular assignment or ongoingly in a course. Marketing tutoring involves walking several lines where we want (1) both teachers and students to understand that tutoring isn't supposed to be punitive, (2) students who seek tutoring in moments of not-understanding to feel like they're doing a healthy and normal thing, and (3) to also attract students who already get decent-to-good grades, but who essentially want to see how high and far they can go. Attempting that balance, we often find ourselves substituting a word like "support" for a word like "help," or for some programs, calling a tutor something like a "coach" or "consultant." (Though, well worth mentioning, avoiding student embarrassment is not the only reason a program might use those terms: some are also trying to emphasize that the student is ultimately in charge of their own learning and decisions, and they may feel that "consultant" conveys that better than "tutor"). But I will say that when I tutored and coordinated tutoring, I often found that we on staff were afraid of shaming students more often than the students themselves seemed to feel ashamed. They were often quick to admit to "being lost" or being confused or needing help.
When patients express a concern about being a burden, I gently offer a reframing: they're bearing many burdens, and others have come alongside them to help them bear those burdens. Just because someone is bearing burdens, though, doesn't make the person themself a burden. Clinicians, friends, family - we should bear one another's burdens.
Incorrect assumptions about the human person plague a lot of anti-suicide talks and I love how you linked bad assumptions with the posters in the tube! Another example is the wildly popular book The Midnight Library, which also based a person’s value on their contributions and usefulness. Boo!!! Gross! We have to fight that lie that plagues our society. Thank you for doing so in this beautiful piece.
I live in Canada now (BC) and it's *staggering* the amount of people choosing MAID. Now there is even talk about allowing minors or those with mental illness being able to choose it for themselves. I have a friend who is an MOA at a clinic and she says that a regular week has multiple individuals seeing one of their docs for MAID. This is only one clinic, in a small town, in an area where the metropolis at large is at least 2.5 million....it's so sad. We even know of pastors (!!) who have chosen it!
Here it is seen by many as a really positive thing for those who a) don't want to suffer and b) don't want to burden others.
By 'relieving' the populace of the elderly, the sick, the disabled, the mentally ill...those who are typically more 'costly' in medical care...it is economically 'efficient' as well, so of course the government would be fine with this route.
Less money spent on (provincial/universal) healthcare, the better. It's awful.
My horror of being a burden on my loved ones has led me ironically to be more of a burden than otherwise, in times when I've refused to e.g. open up / ask for help when I actually need it in the short term (many such cases).
But I my horror of being a burden in the LONG term, especially long end of life care, strikes me as well-founded.
"...To preserve one's life is generally speaking a duty, but it may be the plainest and the highest duty to sacrifice it. War is full of instances in which it is a man's duty not to live, but to die. The duty, in case of shipwreck, of a captain to his crew, of the crew to the passengers, of soldiers to women and children imposes on men the moral necessity, not of the preservation, but of the sacrifice of their lives for others...it would be a very easy and cheap display of commonplace learning to quote from Greek and Latin authors, from Horace, from Juvenal , from Cicero, from Euripides, passage after passage, in which the duty of dying for others has been laid down in glowing and emphatic language as resulting from the principles of heathen ethics; it is enough in a Christian country to remind ourselves of the Great Example whom we process to follow."
Certainly one can distinguish between burdening a loved one with long term health care vs. burdening them by e.g. taking the last life jacket in extremis. But if one's life is included in the list of things properly expendable for altruism, it seems to me a strange moral law that would insist on preserving one's own decrepit life form at great cost to our own children and grandchildren.
I get the practical argument for drawing a bright line there to prevent abuses, but not the moral argument that it can never be an appropriate and even praiseworthy choice!
Are you using a particular definition of autonomy?
I usually use it as making your own choices, not being free from needing help. Letting people make their own choices as much as possible seems like a pretty key principle for ordering life to me.
There’s definitely some tension between autonomy and dependence — more limited options based on what help is available, for example. Is there a different word you’d use for making your own decisions?
It's got a couple different valences—I'm thinking most about auto-nomos, making a law unto yourself.
Making your own choices as much as possible... in relationship with the world as it is, I'm in favor of. You could call my position a more ecological one.
I appreciate Matthew Crawford's framing:
"Understood literally, autonomy means giving a law to oneself. The opposite of autonomy thus understood is heteronomy: being ruled by something alien to oneself. In a culture predicated on this opposition (autonomy good, heteronomy bad), it is difficult to think clearly about attention—the faculty that joins us to the world— because everything located beyond your head is regarded as a potential source of heteronomy, and therefore a threat to the self."
When it comes to e.g. "bodily autonomy" I think the phrase misleads us about our relationship to our bodies. We should be free of outside violence, but we don't author or control our own bodies, and their frailties aren't a betrayal of our selves.
At the end of 2009 my husband & I flew from our then home in southern France to San Francisco, California to care for his beloved sister, dying from stage 4 ovarian cancer. We had spent a month in the summer with her already & knew we would have to come back. We cared for her for 6 weeks, helping her daughter, our niece & with the amazing guidance of wonderful hospice nurses & we were with Elizabeth when she died. The whole experience was both tragic & sublime. God was with us, gifting us with ever more of His patience & compassion for His beloved daughter, as we performed every necessary bodily service for our loved one at the end of her life. She accepted our care with the dignity & grace which is God given & belongs to every human being without exception & was grateful for us. The experience enriched me spiritually & I conside it one of the most fulfilling, beautiful & uplifting gifts God has given me in my life. To allow others to do this for me one day might feel hard because my pride tells me it is undignified but a human being cannot lose their dignity ever & to deprive someone of caring for me is to deprive them of the gifts I received when giving care. To be present & to help ease a person's natural transition into the next world is a massive privilege, an honour. It is a moment when heaven & earth touch, when the presence of angels & God Himself can be felt & it leaves one forever changed.
I see a lot of help exchanged among moms. The grandma/retiree age women often want to help babysit and sometimes are in charge of the meal trains; moms who are still actively mothering often help with meal trains as well. We kind of all know that postpartum is a time of great need. We've all been there and we're all mutually understanding of this. In my parish moms group, we've been talking about how to support each other through pregnancy as well. We haven't gotten anything formal going (although we have been offering mutual help informally sometimes), but I would love to have pregnancy help as a standard thing. One, it's just a time when you need help and most people don't instinctively bring food over during that time, and two, if a woman loses her baby, it would be great if she already has a group of women who have been helping her through morning sickness, who know about the baby and have been caring for her already. That just seems like a better situation in which to grieve.
I have often made a point of asking for help, in part because I do need help sometimes, and in part just to normalize it.
Love this! Placing individual autonomy as the highest ordering principle of human life also creates widespread denial of the ways in which even the most able-bodied adults are dependent on one another. Many young adults call themselves "independent" when they cease relying on people they have close relationships with (e.g. their parents) for food and shelter, but they still depend on myriad interconnected systems and the people they comprise, from farmers to truck drivers to engineers and more. Unless we live completely off grid growing and hunting our own food, we're not independent of other people. Just because those people are nameless and faceless to us doesn't mean they don't exist. Singling out those who require more intensive care than most -- whether from these systems or our friends and family -- as uniquely burdensome and thus undignified is hypocritical.
Great comment—thanks.
I, too, read that NYT article with deep unease... I've had a neurological illness/disability for seven plus years, and spent many of those years in excruciating pain. There were times when my pain was so bad, I understood why a person would prefer nonexistence. I still understand, though to my mind the good response isn't to end the life but to work to ameliorate the pain. Thankfully, MAiD wasn't available to me, and I now have more pain-free days than not. Thankfully, too, my husband didn't see care as demeaning but the way of love.
Thank you Leah for this; I have always considered myself against euthanasia but not when it includes myself! I bought the proverbial theme of not being a burden to someone else ever in my own life, yet I am a nurse and thrive on caring for others. What a juxtaposition in my mind.
If this is relevant to your first question (and sorry for this huge thing if not!), college tutoring programs have a complicated relationship with the fact that, in theory, we're there to enrich *everyone's* experience (whether they're actually struggling in a class, or just want to make sure they continue in the success they're already having, or somewhere in between), but in usual actuality, the students we're most likely to see are the ones who truly need help on a particular assignment or ongoingly in a course. Marketing tutoring involves walking several lines where we want (1) both teachers and students to understand that tutoring isn't supposed to be punitive, (2) students who seek tutoring in moments of not-understanding to feel like they're doing a healthy and normal thing, and (3) to also attract students who already get decent-to-good grades, but who essentially want to see how high and far they can go. Attempting that balance, we often find ourselves substituting a word like "support" for a word like "help," or for some programs, calling a tutor something like a "coach" or "consultant." (Though, well worth mentioning, avoiding student embarrassment is not the only reason a program might use those terms: some are also trying to emphasize that the student is ultimately in charge of their own learning and decisions, and they may feel that "consultant" conveys that better than "tutor"). But I will say that when I tutored and coordinated tutoring, I often found that we on staff were afraid of shaming students more often than the students themselves seemed to feel ashamed. They were often quick to admit to "being lost" or being confused or needing help.
That's a great example! I feel like the aggressive face saving sends the message it really is too terrible to be acknowledged
When patients express a concern about being a burden, I gently offer a reframing: they're bearing many burdens, and others have come alongside them to help them bear those burdens. Just because someone is bearing burdens, though, doesn't make the person themself a burden. Clinicians, friends, family - we should bear one another's burdens.
Incorrect assumptions about the human person plague a lot of anti-suicide talks and I love how you linked bad assumptions with the posters in the tube! Another example is the wildly popular book The Midnight Library, which also based a person’s value on their contributions and usefulness. Boo!!! Gross! We have to fight that lie that plagues our society. Thank you for doing so in this beautiful piece.
I live in Canada now (BC) and it's *staggering* the amount of people choosing MAID. Now there is even talk about allowing minors or those with mental illness being able to choose it for themselves. I have a friend who is an MOA at a clinic and she says that a regular week has multiple individuals seeing one of their docs for MAID. This is only one clinic, in a small town, in an area where the metropolis at large is at least 2.5 million....it's so sad. We even know of pastors (!!) who have chosen it!
How incredibly tragic. We need to know about these things happening. Thanks for sharing.
Of course. It's so alarming.
Here it is seen by many as a really positive thing for those who a) don't want to suffer and b) don't want to burden others.
By 'relieving' the populace of the elderly, the sick, the disabled, the mentally ill...those who are typically more 'costly' in medical care...it is economically 'efficient' as well, so of course the government would be fine with this route.
Less money spent on (provincial/universal) healthcare, the better. It's awful.
History has shown us what happens when societies start “relieving” themselves of “burdens.” It never ends well. God have mercy on us.
My horror of being a burden on my loved ones has led me ironically to be more of a burden than otherwise, in times when I've refused to e.g. open up / ask for help when I actually need it in the short term (many such cases).
But I my horror of being a burden in the LONG term, especially long end of life care, strikes me as well-founded.
I thought of this passage from the famous Regina v Dudley holdings (https://en.wikipedia.org/wiki/R_v_Dudley_and_Stephens):
"...To preserve one's life is generally speaking a duty, but it may be the plainest and the highest duty to sacrifice it. War is full of instances in which it is a man's duty not to live, but to die. The duty, in case of shipwreck, of a captain to his crew, of the crew to the passengers, of soldiers to women and children imposes on men the moral necessity, not of the preservation, but of the sacrifice of their lives for others...it would be a very easy and cheap display of commonplace learning to quote from Greek and Latin authors, from Horace, from Juvenal , from Cicero, from Euripides, passage after passage, in which the duty of dying for others has been laid down in glowing and emphatic language as resulting from the principles of heathen ethics; it is enough in a Christian country to remind ourselves of the Great Example whom we process to follow."
Certainly one can distinguish between burdening a loved one with long term health care vs. burdening them by e.g. taking the last life jacket in extremis. But if one's life is included in the list of things properly expendable for altruism, it seems to me a strange moral law that would insist on preserving one's own decrepit life form at great cost to our own children and grandchildren.
I get the practical argument for drawing a bright line there to prevent abuses, but not the moral argument that it can never be an appropriate and even praiseworthy choice!
I'm so intrigued by your book title; looking forward to reading when it's out in the world!
Are you using a particular definition of autonomy?
I usually use it as making your own choices, not being free from needing help. Letting people make their own choices as much as possible seems like a pretty key principle for ordering life to me.
There’s definitely some tension between autonomy and dependence — more limited options based on what help is available, for example. Is there a different word you’d use for making your own decisions?
It's got a couple different valences—I'm thinking most about auto-nomos, making a law unto yourself.
Making your own choices as much as possible... in relationship with the world as it is, I'm in favor of. You could call my position a more ecological one.
I appreciate Matthew Crawford's framing:
"Understood literally, autonomy means giving a law to oneself. The opposite of autonomy thus understood is heteronomy: being ruled by something alien to oneself. In a culture predicated on this opposition (autonomy good, heteronomy bad), it is difficult to think clearly about attention—the faculty that joins us to the world— because everything located beyond your head is regarded as a potential source of heteronomy, and therefore a threat to the self."
When it comes to e.g. "bodily autonomy" I think the phrase misleads us about our relationship to our bodies. We should be free of outside violence, but we don't author or control our own bodies, and their frailties aren't a betrayal of our selves.