A series of blog posts specifically dealing with both deeply personal and individual experiences of death and mortality, and more political and broad implications of death and mortality especialy as it pertains to disabled people’s lives. Reading the first post is extremely important to understanding the full context of any given other post.
Towards the end of 2014 was also the end of my dad’s life. He died at home. In his last few weeks, he couldn’t speak anymore. I was too sick to travel all the way across the country and into my parents’ house in the middle of the mountains. So I was the only member of our immediate family who couldn’t come to see him in person. And I couldn’t speak either.
We’d been doing video chats on Skype a lot. He’d talk, and I’d type, but mostly we just hung out and loved each other. But now neither of us could talk and he couldn’t type either.
When he became unable to talk anymore, my mom set up their laptop on my dad’s hospital bed, and started Skype video chats for us. Instead of talking or typing, we just stared at each other, and loved each other. And that’s how we said goodbye.
I never knew there were any photos taken at the time, but during the hospital stay after I broke my back a second time, my mom sent me this photo of me and my dad Skyping. I’m really glad to have these memories. I’m really glad we had the chance to say goodbye. I feel amazingly lucky for that.
When he died, he sent me a chunk of his beard hairs. (When I was little, he always let me play with his beard and his loose skin.)
I have been wearing those in floating lockets ever since, and they’re really beautiful. Photos don’t do them justice. But I’m able to walk around with a piece of his beard worn as jewelry every day. My mom sent some more beard when I was in the hospital, because somehow in the lead-up to the hospital stay I lost my other locket, and my spare beard hairs are in a drawer somewhere inaccessible to me right now. So when she sent the other beard hairs, I was able to put them in a new locket. I’m equally grateful to have something physical and tangible to remember him by any time I want to. Beard hair is more durable than memory sometimes.
And I’m really glad to have a father who understood how much can be said without saying it, who knew how to communicate using objects, and who spent his last days doing his best to love as much as he possibly could.
Any bolding in the following quote is mine, for emphasis:
I met my partner when I was 34. He was different. I was different. Instead of looking at each other with that half-cautious raised eyebrow, slightly uncomfortable thing people give you when you’re just being your normal strange self, we relaxed around each other. We spoke the same language. Our early courtship days were full of discussions on religion, fears of death, the cultural intersections of personal loss and addiction. We talked about death a lot. The first time I saw him naked, I told him he had a great body. He said, without missing a beat, “thanks. It’s a rental.”
Eight years ago, I watched him die. He drowned on a beautiful, ordinary, fine summer day.
My understanding of death as a natural process did not help me. My familiarity with death rituals and funerary art and the darker, harder aspects of life did not make his death – or my grief – any easier. Accepting that death happens can’t make death okay. Not Matt’s death, and not deaths that many in this world see.
I don’t think it’s intentional, but I think a lot of what we have in mind when we think of death positivity is death that happens at the end of a normal, natural, expected western lifespan. In those kinds of deaths, you get to be sad, yes. But it makes more sense, in addition to that sadness, to lean on our ideas about the cycles of life, of the beauty in a life lived well. Death positivity feels really congruent in the face of those kinds of deaths.
But that’s not the only way we die.
Sometimes death is not beautiful. Sometimes death is not normal. Sometimes death is wrong.
Caitlyn Doughty, “Death Positivity in the Face of Grief”‘, Order of the Good Death
I am really glad she is writing about things like this.
Except that I was mostly dealing with the ethical and power-related issues involved in working in the hospice or other parts of the death industry. And she is dealing with the topic on a more personal level. But both of us are trying to get at something about the way that standard death positivity alone can fail people.
The common theme I noticed
Another quote from her article:
There’s a weird, clanging disconnect when we try to apply what we know as death positive people into the gaping open wound of death itself, especially the “out of order” kinds. Accidents and natural disasters can’t be treated as a “natural process.” Hate crimes, gender-based violence, deaths hastened by lack of access to health care, death created by acts of war or targeted genocide – we can’t claim those deaths as beautiful. We can’t use our standard language here. Talking about these kinds of death – and the grief that comes with them – is one of the last real taboos.
What I hear from people grieving losses from these kinds of death is that being friendly with death – even being deeply interested in it as a cultural exploration – feels wholly irrelevant to their grief. A mother whose 14 year old son was killed by a drunk driver told me recently that the death positive movement felt “too hip to be of use.” That the art, the cafes, the memes about day of the dead, and roman crypts, and bat tattoos felt flippant in the face of what they were living. I hate that. And, I get it. Without meaning to, we can alienate or injure people going through some of the hardest times of their lives.
Caitlin Doughty, “Death Positivity in the Face of Grief”, Order of the Good Death
Again, I am glad she is writing all this. As a funeral home director, I’m sure she sees more than her fair share of these situations. And I have always admired her ability and willingness to go deeper than a shallow understanding of death positivity would allow. She may have helped define death positivity as a movement, but she thinks for herself. I may not always agree with her, but I always learn something from her.
And while people may like to caricature her, and the movement she is associated with, as a goth kid who doesn’t understand Real Death? In reality, despite all the images associated with her in people’s heads, when it comes to dealing with death and grief she is extraordinarily sensitive to the experiences of other people. She doesn’t shy away from difficult topics and difficult situations. She doesn’t go in for easy answers. If you are walking in the dark, she is someone you want by your side. And she will
Anyway, in the wake of the antisemitic massacre at the synagogue in Pittsburgh, I find her blog post to be more relevant than ever. I don’t quite understand how I never saw it until now, but I am glad to have found it. Like many good posts, it makes you think, and gives you more questions than answers.
Also I had no idea that she lost a partner to drowning. I know this must have happened a long time ago, but my heart goes out to her. I can’t imagine.
Another blog post by the same author, worth reading:
For the first few years I was an advocate for reform in the death industry, I used phrases like “death awareness” and “death acceptance” to describe the movement I was a part of. After all, these were the terms used since the 1970s by scholars and practitioners.
I became “death positive” almost by accident. It started with a tweet, asking why we had movements like body positivity and sex positivity, but we couldn’t use that same umbrella to be forward thinking about our own deaths. People began to respond to the tweet, and the term took off. As an advocate, you go where the enthusiasm and momentum take you, and the term death positivity was challenging and necessary.
I would never tell you to self-identify as death positive. Even if you share all of our principles (laid out here), and support our advocacy, that may not mean you want to align with the movement. That’s fair! But I’ve noticed some misconceptions about the movement’s purpose and values lately, and I want to make sure our stance is clear.
Caitlin Doughty, “What Death Positive Is Not”, Order of the Good Death
In my last post, I discussed the way food and water are medicalized when you get them through a feeding tube. But the way I discussed it could’ve given the wrong impression. I discussed it mostly in terms of its emotional effects. The way it changes your relationship to food. The absurdity of having to argue with doctors about how much water you’re allowed to drink. When you have no medical reason for fluid restriction or any other actual excuse for them to act like they have a right to control something so basic. The importance of eating food that you enjoy, even if you’re eating it through a tube. The importance of food being emotional, sensory, cultural, all kinds of things besides medical.
But in all of that discussion, I never discussed the most sinister part of food and water being considered medical.
When food and water become medical treatments, they become optional. They become something you can refuse. They become something a doctor, or an ethics committee (what an Orwellian name, given the way they so frequently treat disabled people), can decide is futile or unnecessary or medically inadvisable or something else along those lines.
In other words, when food and water become a medical treatment, then it becomes much easier to kill you by withholding them.
I filled out a living will awhile back. Living wills are disturbing in all kinds of ways that most people don’t appreciate. Most people see living wills as a wonderful way for people to indicate their future choices about medical treatments. Most people don’t see the ways they’re set up to make it much easier to choose death than to choose life with a disability. And to subtly nudge you in that general direction. They’re not the value-neutral documents most people assume they are. They already have values built into them that may not be the same values as the person filling them out.
I could obviously go on at quite some length about living wills. I’m not going to do it here though. I want to talk about something very specific.
The structure of the living will I filled out basically went like this: “If you needed this treatment in order to survive, would you want to die?” The part that goes this treatment starts out with fairly noninvasive stuff. And progresses through a series of medical treatments, in order from what the creators of the document consider least drastic to most drastic.
Anyway, the first treatment I remember having to answer questions about was a feeding tube. Which does make sense within their structure: Feeding tubes are pretty noninvasive and completely reversible.
But it disturbs me.
It disturbs me that a feeding tube is considered something you should have to decide whether to live or die about.
It disturbs me that food and water are medical.
Because that’s where it all starts.
Where food and water are medical.
Mouth Magazine reported once on a woman who’d had a stroke. She had a living will saying she wouldn’t want continued medical treatment if she had brain damage. She changed her mind once she had brain damage. She wasn’t considered competent to change her mind. They decided food and water were medical treatments — in her case, she didn’t even need a feeding tube. She tried desperately to get food and water, but they prevented her from doing so, saying they were honoring her wishes and that she was incompetent to make her own decisions.
Mouth Magazine had this to say about itself at one point:
During the last ten years, it is fair to say, Mouth has lowered the level of discourse on the subject of the helping system. About time, too.
Mouth brings the conversation down to street level, where well-intentioned “special” programs wreak havoc in the lives of ordinary people. People talk about calling a spade a spade. We call Jack Kevorkian a serial killer. And when maggots outnumber nurses’ aides at what others call a “care facility,” we call it a hellhole. We say it out loud: if special education is so darned special, every kid in every school ought to have the benefit of it.
In that spirit, I will call what they did to that woman exactly what it was: murder.
All the bullshit about honoring her wishes is bullshit. She clearly wanted to be alive. To declare someone incompetent to decide they want to survive, to declare someone incompetent to fucking change their mind… that’s some high-order bullshit. Dangerous bullshit. Deadly, murderous bullshit.
And this bullshit, and this kind of murder, happens daily. One person I know who worked in the medical system said the disturbing thing to her was that she was complicit in at least one murder without being aware of it. Because of the ways they warp your thinking to make it seem like something, anything is going on other than the intentional killing of another human being.
Except it is the intentional killing of another human being.
And often, it starts with the medicalization of food and water.
Food and water are not medical treatments.
Food and water don’t become medical treatments just because they take an unusual route into your body.
A feeding tube is just like having another mouth. It’s just that the mouth is located in an odd spot. That’s all it is. It’s a mouth that opens directly into your stomach or your intestine, instead of going down your esophagus first. (Then there’s NG and NJ tubes, which do go down your esophagus, but they’re still just another slightly unusual route for food to take into your body.)
There is nothing about a feeding tube that truly makes food and water medical treatments.
There is nothing about disability, including brain damage, that truly makes food and water medical treatments.
This reclassification exists in part to make it easier to kill us. Not that every single person who medicalizes food and water has that in mind. But that’s part of the point behind the reasoning’s existence. And even when it’s not initially intended that way. Anyone who wants to use it that way can easily just pick up the situation and use it in exactly that way. Once food and water become a medical treatment, starvation and dehydration become withholding medical treatment rather than starving or dehydrating someone.
You can’t even have an honest conversation about the issues involved here, when everything’s replaced with a medical euphemism. Because we’re actually talking about murder (the intentional killing of another human being) and suicide (someone intentionally killing themselves). And you can debate the ethics of murder or suicide in various circumstances till the cows come home. But you can’t even hold the debate in an honest or straightforward fashion when murder and suicide or even just killing are replaced with withholding medical treatment.
And when food and water are only considered medical treatment for a certain class of person (usually some subgroup of disabled people), I call that deadly ableism.
So medicalizing food and water is never just an annoyance or nuisance. It’s like a weapon: Someone can absentmindedly carry it into a room and leave it lying around for some reason that has nothing to do with killing. But then someone else can pick it up and seriously injure or kill you with it. So it’s never not sinister, disturbing, and dangerous.
And that’s important to always keep in mind: Once something fundamental to survival is considered medical treatment, it can always be withheld much more easily without raising many eyebrows. Hell, people who advocate withholding it can paint themselves as champions of your human rights rather than people trying to prevent you from exercising your human right to, well, food and water. It makes it way easier to turn everything on its head without anyone noticing what’s going on.
There’s a problem I’ve seen over and over in people like hospice workers (and this post is gonna focus on hospice, but it can be applied more broadly). And it’s one of the things that made me reluctant to out myself as a Deathling. Because there’s so many people with this problem, in Deathling-type communities, that I didn’t want to associate myself with it. Because this problem can kill people. And no matter how you feel about death personally, that’s not okay.
To describe it, though, I’m gonna start somewhere weird. I’ve been reading a book about octopuses. Or more about the author and her experiences with octopuses and thoughts about them. I’ve been struggling to find a way to articulate the problem here. And a passage from her book really helped, even though it has nothing whatsoever to do with either hospice or death.
It has to do with wild-caught octopuses captured for aquariums. But understand that I didn’t choose this passage because of my own views on octopuses. Nor about Ken’s views. Rather, because of the way Ken approaches his views on the matter. Ken is an aquarium worker who, among many other aspects to his job, helps with transporting new octopuses to the aquarium. The author asked him his opinions on catching wild octopuses, and the following is what he said (bolding in this and any other quote on this page is my own, added for emphasis):
How does he feel about capturing animals in the wild and sending them to a life in captivity? He has no regrets. “They’re ambassadors from the wild,” he said. “Unless people know about and see these animals, there will be no stewardship for octopuses in the wild. So knowing they are going to accredited institutions, where they are going to be loved, where people will see the animal in its glory—that’s good, and it makes me happy. She’ll live a long, good life—longer than in the wild.”
Montgomery, Sy. The Soul of an Octopus: A Surprising Exploration into the Wonder of Consciousness (pp. 188-189). Atria Books. Kindle Edition.
He might be right that he’s doing the right thing. He might be wrong. I’m not even going to go there. That’s not why I brought this up.
He’s come to a conclusion about why it’s okay with him for this to happen. It may be a good conclusion. A reasonable conclusion. A justifiable conclusion. A right conclusion. He might be making the right decision. That’s still not the point.
The point is, it’s his conclusion that, for instance, the octopus is an ambassador.
The thing about ambassadors. Real life ambassadors. The literal kind who exist and do work that’s mysterious to me but has something to do with representing their countries to other countries. Is they choose to be ambassadors.
It’s not the octopus deciding to be an ambassador for her species.
The author, Sy Montgomery, a volunteer at the aquarium, does not explore this matter any further or deeper.
But it’s an exact illustration of something that happens with many hospice workers and other people in the death industry. And I’ve never heard anyone discuss this in public. But I’ve seen it enough times to know what I’m looking at when I do. And I know it’s horribly dangerous in a context where you’re working with dying people.
Deathlings like to think and talk about our relationships with death. Most of us feel that we fear death less than we used to. Or don’t fear it at all. Most of us see death as embedded in life itself, as a necessary part of the cycle of life, even as potentially quite beautiful.
Those of us who’ve spent much time around actual death and dying, whether our own or other people’s, might also notice the power of Death. The sacredness of it. A depth and beauty and meaning that can’t be put into words or fit into blog posts. When Death is near, either for you or someone else, the world can become transparent to love, transparent to light. There is power and meaning there, on a level that even many atheists and agnostics will acknowledge as sacred on some level, for lack of a better term.
And there’s probably at least one blog post on what happens when you notice all that but forget to give Death the respect She deserves. But I’m not gonna go there right now. Right now, I want to talk about what happens to a lot of people who work in hospice or similar industries, who are exposed to a lot of death and develop something close to this understanding of it. An understanding that I largely share — but as with the aquarium, that’s not the point.
The point is… there’s a level on which your personal revelations about death don’t matter. The realizations you’ve come to. The way they’ve altered your entire life for the better. The way you see your job differently, as a sacred duty of sorts, now. How you’ve accepted the deaths of your patients or clients, how that’s changed you, and them, and your relationshp to future patients. All of these things that matter deeply to you.
They also don’t matter one whit on another level.
Just like octopuses don’t choose to be ambassadors. People don’t choose to develop a terminal illness. Most wild octopuses will never face the possibility of being caught and put in aquariums. Everyone will die one day. But these situations share one important thing in common.
The octopus’s viewpoint on captivity will have fuck-all to do with Ken’s reasons, or rationalizations, for participating in her capture. The octopus has her own viewpoint. And nobody stops much to consider her viewpoint in all of this. They’re too busy with their own.
Everyone’s death is their own.
That’s my main point. I’m gonna go off on a very long tangent. But I do have a main point. So I’m gonna repeat it, in bold, a LOT:
Everyone’s death is their own.
Everyone’s death is their own.
Everyone’s death is their own.
Everyone’s death is their own.
Everyone’s death is their own.
Everyone’s death is their own.
Everyone’s death is their own.
Everyone’s death is their own. Everyone’s death belongs to them. Everyone’s relationship to death, and to Death, is theirs. Theirs. Not yours. Theirs.
That means it is not your job to bring their views of death more into alignment with yours.
That means it is not your job to sit there accepting and reveling in the beauty of their death for them when that may not be how they feel, or want to feel, at all.
And it is not your job to teach them that death is wonderful and beautiful and a part of life and everything else that Deathlings often believe.
That sacredness associated with Death… a lot of people don’t seem to realize this, or realize it fully enough to put it into practice, but coming into contact with that on a regular basis comes with responsibilities. One of which is a deep respect for Death. But there’s too many to count. One, though, is not to mess with someone else’s experience of Death, even if their experience is not the one you want them to be having.
I don’t mean you should never talk about your viewpoint.
But sick and dying people can be very vulnerable. This includes having reduced defenses against unwanted outside ideas. Which includes your ideas. Which means you have to approach any job involving death with the utmost caution and care.
And you have to stay on the other side of a firm line in the sand. And you have to be the one drawing that line. Your patient may not be capable of drawing it, or aware that it needs to be drawn. It’s not like terminal illness comes with an automatic manual given to you that tells you you’re vulnerable to accidentally absorbing the opinions of hospice workers. Or what to do if you do notice.
Thsi may seem like a weird thing for me to have such an adamant opinion about. It’s because no matter how it feels to you, this can lead to situations that are downright sinister.
Talking someone into accepting death sounds so wonderful, especially to Deathlings who usually have a particular view on death acceptance. It sounds like the right thing to do.
But you could be talking someone into making a different decision about their medical treatment than they would’ve decided otherwise.
They may decide against a medical treatment that would give them a little more time in the world, time they really very much want. The hospice system is already structured to discourage life-sustaining medical treatment, so it wouldn’t take much to tip someone over the edge into making a decision that’s against what they want at the end of their life.
They may decide against a medical treatment that would not make them live longer, but might help them live more the way they want to in their time left.
They may accept a medical treatment that they know is likely to result in them dying sooner.
They may accept the idea that they need to die on a certain schedule. (I know that sounds weird, but this happens in hospice a lot when deaths are treated as lot more planned than actual death tends to work. And when you’re barely hanging onto life to begin with, you can end up having more conscious control over your time of death than you’d imagine someone would.)
They may make decisions that have more to do with the convenience of their hospice institution, than with their own desires and choices. And these decisions may end up justified in the name of accepting and coming to terms with one’s own death.
They may start receiving a lot of praise and encouragement for adopting views similar to yours, with all kinds of consequences for all kinds of decisions they may make.
You might not understand their viewpoint. You might decide that all decisions to prolong life in situations you wouldn’t want your life prolonged, are actually because of an irrational fear of death that must be overcome in order to be at peace. And then you might persuade them and wear them down. Until they are making very different decisions than the ones in their own best interest by their own values.
Just because you can’t fathom a reason someone would want to see Alzheimer’s through to the end and be kept alive at all costs, doesn’t mean there aren’t good reasons for this that have nothing to do with fearing death.
And. Even if it does have to do with an irrational fear of death. That is part of their relationship with death. It’s not your place to decide why they ought to be making their decisions, any more than it’s your place to decide what decisions they ought to be making.
And no, I’m not saying nobody should share their opinions, or persuade anyone of anything, or try to change other people’s minds, ever. But if you’re a hospice worker or healthcare professional, you’re in a position of great authority and power over your patients. And that power comes with a responsibility to do your level best not to misuse it. Which includes learning to guard against accidental misuses of power.
And when you’re dealing with the end of someone’s life, the potential for great harm from the misuse of that power is only amplified. The more that potential is there, the harder you have to work not to misuse it. And believe me, if you’re working on the end of the death industry where you’re dealing with the last days of the living, you’ve got more power than you are probably even aware of.
Michelle storms by with the crash cart. “They want everything done. She used the wrong language; she gave them an alternative. She said we can keep going.” She means Shreya, the resident. Shreya is in Michelle’s room. She comes out and goes up to the Pulmonary fellow. She looks concerned that she has done the wrong thing. I can hear her say, “Lactate’s seventeen, bicarb drip.” She opened a door she’s trying to close. They don’t know how to talk to families. They don’t know how to tell them it’s okay to stop. Doctors will almost never tell the family the patient is dying. Nurses will. Nurses have little phrases. Dana says, “actively dying.” Lori will say, “it’s irreversible.” When they ask me how the patient is doing and it’s bad, I’ll say, “You should prepare yourself for the worst.” Some nurses will try and sell DNR orders. They’ll ask, “Would you want to have chest compressions?” and they’ll clasp their fingers together and move their upper body like a jackhammer, or, “Would you want to be shocked?” and pretend they’re holding paddles onto a chest and then jerk their body like they got Tasered.
Kelly, James. Where Night Is Day: The World of the ICU (The Culture and Politics of Health Care Work) (pp. 76-77). Cornell University Press. Kindle Edition.
The above passage was written by an ICU nurse who has no problem with the practice of ‘guiding’ families in the direction of DNR/DNI (Do Not Resuscitate/Do Not Intubate) orders.
It’s a relatively common point of view that runs like this: It’s cruel to prolong life when the only thing a person is doing is suffering. Quality of life is more important than quantity of life. Patients and families who don’t choose DNR/DNI are either:
irrationally afraid of death
driven by strict religious beliefs (and religious beliefs that contradict the medical consensus are treated as a bad thing in this kind of context)
unaware how severely disabled a person often is after a resuscitation
unaware they’re “allowed to let go”
unaware of what a resuscitation actually looks like (pretty brutal, often)
unaware of the low success rates of resuscitation (because on TV shows resuscitation almost always works, whereas in real life it almost always doesn’t, or doesn’t work the way people expect it to)
So they genuinely believe they are sparing a person needless suffering by using the above tactics talk to people into DNR/DNI orders. They think people who “want everything done” are simply ignorant of the medical realities.
My mother, who has coded before and probably will again (we have an inherited neuromuscular condition, hers is more severe at this point in our lives), does not have a DNR.
Doctors and nurses are always surprised, because she was a respiratory therapist for decades. They say they’d expect any former medical professional to want a DNR order.
She says it’s because she’s a former medical professional that she does not have a DNR order. She wants to live, is in her seventies, and knows firsthand the extreme bias in the medical professioin against both elderly and disabled people. She’s had doctors refuse to treat her because of her age. She knows we already have things stacked against us and that a DNR would be dangerous.
Laura Hershey, an activist from the Independent Living Movement (a branch of disability rights mostly made up of physically disabled people), had a friend in the movement who got talked into a DNR in this manner. This is Laura’s account of what happened, written November 2, 1999:
A doctor entered, on his rounds. […] Becky and I both jumped in to tell him that Ginny wanted to talk to him about the DNR, that we thought she wants it revoked.
For the next fifteen minutes, the four of us engaged in a conversation that was difficult, both mechanically and emotionally. Through a painstaking exchange of yes-no questions, nods, scratchy notes, and lip-reading, Ginny conveyed her desire for every effort to save her life.
The doctor heard this message, was willing to hear it; but his obvious biases made him subtly resistant. Here’s how he posed one question to Ginny: “Would you want to be put on a respirator?” Ginny responded with a fearful, uncertain look. I instantly insisted on rephrasing the question like this: “If you couldn’t breathe on your own, would you want them to use a respirator to save your life, rather than letting you die?” Still with an apprehensive expression, Ginny nevertheless nodded, yes.
By the end of the conversation, Ginny had indicated unequivocally that she would want ventilation if necessary to save her life; and that she would want attempts made to start her heart if it stopped beating. The doctor agreed to remove the DNR order immediately.
Ginny had been weak with pneumonia, and with a trach making communication difficult, and they talked her into signing a DNR she didn’t want to sign.
I can say from firsthand experience that being sick and weak really does make it hard to fight off other people’s opinions of what is best for you. This is even true when you’re 100% sure you disagree. When I was hospitalized for aspiration pneumonia (and was also weak from malnutrition) and they were trying hard to talk me out of a feeding tube — I knew I wanted the feeding tube. And without having had a lot of people in my corner, I’m not sure I would’ve been able to hold out for survival much longer. Being weak even simply on a physical level makes it very hard to fight these things.
Ginny’s story continues, by the way. This happens:
That was about a month ago. A lot has changed since then, mostly for the better. Ginny regained her voice, and began growing stronger once the infection left her lungs. She has repeatedly stated her intention to go on living, in front of a variety of witnesses. Her friends have stayed in touch with her, and her situation.
About three weeks after my visit with her, I heard that Ginny’s gradual recovery was abruptly interrupted when she went into respiratory failure. Emergency measures saved her life, and her recovery now continues.
Ginny would not have survived this if the DNR she was coerced into signing had stayed in place.
If you ever doubt the power your opinions might have, think of Ginny. Pneumonia made her weak enough to have trouble fending off other people’s opinions. It’s very likely that whatever nurse or doctor talked her into signing the DNR, used subtle persuasion of the sort described in that book by the ICU nurse. It doesn’t take much persuasion or pressure when you’re already vulnerable.
I was simply walking down the hall of the hospital last time I was there, and there was a group of residents speaking to an attending. The conversation I overheard was alarming. They’d saved the life of a cardiac patient. He was set to go home soon, without major complications. The patient was extremely happy about this. The attending was very unhappy about this and wanted to tell the residents why.
So the attending explained that while the man was going home without complications, that wasn’t the only possible outcome. And he didn’t think the man’s family should’ve chosen to tell the doctors to save his life. He said it was possible the man could’ve ended up with a severe disability. And therefore, it would’ve been a better decision to let the man die even though his life was saved and he was extremely happy with this outcome.
Medical professionals frequently believe this stuff is morally neutral information. That in trying to persuade people to choose death over life, they are simply giving people the facts. The thing is, you can choose which facts to give people, and what manner to present those facts in, and “giving someone the facts” turns into an act of persuasion. And you don’t even have to mean to do so, for this to happen.
If You’re Interested In Power & Control…
Anyone interested in the use and misuse of power in human services professions, could do a lot worse than reading Dave Hingsburger’s book, Power Tools. I always plug this book. It’s extremely short and easy to read, but contains a lot of important information on how to recognize your power over other people and how to do your best to avoid misusing it. It’s available from Diverse City Press. Or Amazon.
He also wrote another book of the same size, shape, and potency, called First Contact. It’s about communicating with people with (presumed) profound cognitive impairments. And it’s also well within the topic of this post, given that this level of cognitive impairment is often the fate that medical professionals are trying to save us from when they push DNRs at us. You might want to pick that one up at the same time you get Power Tools. They go well together, and both of them contain real-world wisdom that applies to a lot of everyday life situations beyond the ones explicitly described in the book.
While I’m shamelessly plugging Hingsburger’s work, he has a blog called Of Battered Aspect. And there’s a longer review of both Power Tools and First Contact on the website of the old disability rights magazine, Ragged Edge, called Same, Different, Human. A quote from the review that mirrors my thoughts on these books:
The subject matter may appear limited to the service systems concerned with people with intellectual impairments, and Hingsburger’s focus is the individual rather than society. Nonetheless, I commend these books to you.
I read Dave Hingsburger as an ethicist. Not an ivory-tower Ivy League ethicist, mind you, but rather one who worries how to live well amid the blood, the shit, and the chains that surround him. Instead of offering moral axioms from some fake-objective standpoint and then applying them to whitewashed situations, he acknowledges the ways in which the commitments he has made and the messy situations in which he finds himself shape his moral development and his moral outlook.
Many of the other writers on my shelf take a political approach to the problems of power and powerlessness, to the problem of disability, asking how communities, organizations, nations should act. What does justice demand? they ask. How can we address injustice?
Hingsburger’s stance is more ethical than political, though it is also concerned with disability. How, he asks, should I, an individual, respond to the people around me? Very often, the people around him, the people to whom he is responding, are disabled people. It’s not that he pretends injustice away, or that he treats it as irrelevant; it’s just that even when he addresses injustice, he confronts it in an ethical sense, as an individual. Even when he addresses the politics of disability — the self-advocacy movement — he is concerned with his relationship to it.
His primary ethical concern is interpersonal, and his rule is awareness: awareness of the moral risk in any important action and awareness of one another. “People don’t hurt people. People hurt things,” he quotes Dick Sobsey as saying (First Contact, p. 20). And he acknowledges that such awareness, such self-knowledge, is much more difficult than it looks.
Like Cal Montgomery, the author of the review, I can’t stop recommending these books. To the point I keep a supply of multiple copies each because people walk off with them and forget to return them.
Now back to your regularly scheduled blog post on death and octopuses…
When I was writing this post, I tried to Google statistics on resuscitation. I found a news article alarmed me. Not because of the statistics, but because of the way it was point of the article was to inform people that resuscitation in real life is not like in the movies, either in terms of statistics, outcomes, or the level of violence it does to the person’s body. But the article made it impossible for me to understand the statistics.
See, every time it mentioned death, it mentioned severe disability in the same breath. I was trying to look up survival rates. But it was so ambiguously worded that I couldn’t tell whether survival with a severe neurological impairment requiring lifelong care counted as survival for the purposes of the article. And no matter what you think of the “quality of life” issues involved (I, like Laura Hershey and many other disability rights activists, am extremely wary of that phrase), being alive and unconscious is still being alive. And there’s plenty of new evidence that people presumed unconscious based on outward responsiveness are not always unconscious at all. Which may horrify you in completely different ways, but it’s still being alive. And I never did figure out what the statistics in the article meant.
Disability is often considered a fate worse than death. And while I consider the fear of death and the fear of disabiliy deeply intertwined, many Deathlings, and many hospice workers, have conquered one without touching the other at all. An extreme fear of disability, combined with a lack of fear of death, can make people view death as the answer to a type of disability they greatly fear.
This is an extremely common perspective among medical professionals, including hospice workers. And it’s the entire point behind DNRs, living wills, and the like. These are not documents that were created to offer a neutral set of choices to people. They were created to make it easier to say “This is the level of disability at which I would rather die.” You can use them to say other things, but there’s pressure not to, and it’s harder to get such wishes upheld in any circumstances where someone disputes your wish to stay alive. It’s much easier to use a living will to die than to use it to live.
Anyway, medical professionals have been shown to rate disabled people’s quality of life lower than we rate it ourselves. There’s a very jargon-heavy paper called Quality of Life, Disability, and Hedonic Psychology (that’s a PDF link) that deals with the topic of disability and quality of life (abbreviated QOL in the article) in a fair bit of depth.
One belief about QOL has been very widely demonstrated. Nondisabled people believe that the QOL of people who live with disabilities is extremely low. This belief will be termed the standard view of the QOL of disabled people. The standard view is faced by an apparent falsification: When disabled people report about their own QOL, they rate it only slightly lower than when nondisabled people self-report their own QOL. This produces the anomaly of the QOL of disabled people (Amundson 2005). The anomaly is the pair of conflicting assertions: the standard view on the one hand, and the conflicting self-reports ofdisabled people on the other.
In fact, nondisabled health care professionals judge the QOL of disabled people to be even lower than the judgments made by nondisabled people who are not health care professionals (Duckworth 1988; Brillhart, Jay, and Wyers 1990; Bach and Tilton 1994; Gerhart et al. 1994; Albrecht and Devlieger 1999).
If hedonics researchers believed that disabled people were kidding themselves about their own QOL, nothing would stop them from saying it. I therefore propose that we ask them who’s right about the QOL of disabled people. Does hedonic research support the standard view that disabled people have an intrinsically low QOL? Or is there evidence that the standard view is mistaken, and the disabled people who report a high QOL are correct when they do so? Hedonic psychologists may not have the last word in the debate, but their contribution must be considered. The results are these: according to the experimental results of hedonic psychology, the judgments of nondisabled commentators about the QOL of disabled people are far more likely to be mistaken than are the self-reports of disabled people.
So basically, nondisabled people in general assume that disabled people are much unhappier than we are and have very little in the way of ‘quality of life’. And medical professionals judge our quality of life to be even lower than your average nondisabled person judges our quality of life to be. Meanwhile, disabled people are roughly as happy or unhappy as nondisabled people (there’s many possible reasons for our quality of life to rate slightly lower that don’t actually reflect disability as much as the way it’s tested, but I don’t have the time or space to get into all the details), and certainly much happier than either nondisabled people in general, or medical professionals, assume we are.
So if you’re a medical or hospice professional, advising dying people on life and death decisions involving disability, you’re also likely to be judging our quality of life much lower than it actually is. And as a medical professional, you’re more likely to be biased in that area than someone who isn’t a medical professional. The presence of a known bias, like the presence of power, requires much more increased carefulness to be taken with how you wield power around people.
And the above is just one major way this can go wrong. It’s a way I and many other disability right activists are highly familiar with, which is why I was able to go into so much depth. I could really go on all day. But hopefully it’s enough to show you there are dangers you might not even be aware of.
So now that I’ve tried to get way too much information crammed into one blog post, the basic point I want to make?
Everyone’s death is their own.
Being accepting of death is a wonderful thing, in my eyes. But there are many different ways of accepting death. And no matter how valuable it is to you that you have accepted death, you have to be really careful as a healthcare worker, not to impose your own ideas about death on people who might not want them. However an octopus feels about captivity is the business of the octopus, and how a dying person feels about their own death is the business of the dying person.
Everyone’s death is their own.
Given the biases of healthcare professionals around disability, and the power they have over disabled people (and dying people are generally either disabled or about to become disabled), it’s especially important for them to keep this in mind. It’s very easy for death acceptance in these circumstances to become something much more sinister.
Everyone’s death is their own.
But it’s also a matter of respect: People’s death is deeply personal and for lack of a better word, sacred. And people’s own death belongs to them. It’s not yours to mold into a shape you find more fitting. No matter how appealing your own beliefs about death are to you. The other person might have very good reasons for beliefs that mean something to them.
Everyone’s death is their own.
There really is an idealized death, or an idealized set of deaths, that is pushed wholesale on hospice patients. People who work in hospice often come to absorb this view of death, and of how death should happen. But actual patients of hospice may have very different experiences. Experiences they are afraid to even bring up out loud, because of the power relationships inolved.
Everyone’s death is their own.
And if you care about a person, you want to meet them where they’re at. It’s impossible to truly know another person, to even begin to understand them, if all you can do when you see them is look in the mirror. And when you get too wrapped up in your own reflection, you can’t see anyone else, you can’t know anyone else, you can’t connect with anyone else. And if you can’t see who someone is even a little, you certainly can’t accurately perceive their relationship with death. Nor can you respond to it in a way that’s even halfway adequate.
I’ll leave you with an excerpt from Dave Hingsburger’s First Contact:
When considering making contact with people who have multiple disabilities – those who are considered to be so significantly mentally disabled that they are in a “vegetative” (that’s what it’s called) state – there is a huge obstacle. Prejudice. Yours. Mine. Ours. Against them. The difficulty here is that prejudice will feel like pity. You may be overwhelmed by a sense of hopelessness first, and then, if you examine the feeling long enough, terror.
They can’t be “like us” because then the logical extension of that is that they must be “feeling in there” and what they are feeling in there is what we’d be feeling in there – desperation, hopelessness, isolation, loneliness. The misuse of your sense of identification with the person inside that body will lead you to think horrible thoughts.
“I’d rather be dead than be like that.”
“If I was like that I’d like to be smothered.”
Well, back off. This isn’t about you. Catching a first glimpse of a soul inside a body that is so different from your own can be frightening, true. But it can, if you work hard enough, be exhilarating. I know, I know, I know, you have to “walk a mile in their moccasins.” The temptation is to engage in an incredible waste of time and psychological energy – spending time imagining what it would be like to be you inside them. How egocentric is that?
The issue is coming to understand and to get to know what it’s like to be them, in them. That’s the joy of contact, of connection. It allows us other perspectives. The placing of ourselves inside someone else and then imagining what it would be like, is not learning – it’s like masturbation but without the stickiness. And while it’s fun, and it is fun, it’s not particularly valuable.
And it gets in the way.
How can you make contact with someone when all you see reflected in their eyes is your sad face? Get out of the way. Understand that you are you. You are only you. Now look again, look past your own reflection and what do you see?
Some one else.
Cool, huh? Even cooler is to discover who that person is. To do this you need to step by prejudice. Please, please, please, don’t delude yourself into thinking that you don’t harbour anti-disability sentiments inside your heart. Please don’t say, “but my child…” “but my best friend is…” or even “but I’m…” We everyone of us is prejudiced against those who are different. Awareness is the first step.
And that is why obtaining a copy of those two books is so very worth it.
And remember — everyone’s death is their own. If you work with dying people, don’t stare at your own reflection. Get out of your own way and deal with them, and their relationship with death, on their own terms, not yours. And whatever you do, don’t use their death as a vehicle for your own desire to be close to the beautiful side of death. I promise it will be better for you, and more importantly, for them.
“She draws on an old and familiar series of clichés: disability as dependence, disability as innate limitation, disability as political voicelessness. She comes at disability through feminism and commits the traditional feminist errors about disability, rather than reaching for the vitality that a fully realized interaction between feminists and those concerned with disability can offer.”
How I feel about most Deathlings whenever they even hint at discussing disability or at trusting and using systems and practices that tend to kill us a lot. Which is disturbingly often. Yet…
Spoiler: I’m a closet Deathling (well I guess not closet anymore), and an actual member of the Order of the Good Death. But one reaching for connections between death acceptance and disability rights that compromise absolutely nothing of the safety of disabled people, and that come at things from what to many people are probably wholly unexpected angles. Stay tuned for more on that, I’ve been writing a post ever since someone asked me about it. It’s complicated and hard to write the bullet points.
And that thing about what a fully realized interaction could offer… I only wish, with Deathlings and disability rights. I haven’t even seen it tried yet. I’m trying singlehandedly a little with parts of this mortality series, I’m sure others are out there doing the same mostly in isolation. I think the irrational fear of death and the irrational fear of disability are deeply intertwined and equally destructive, among many other angles I wish people would try and look at things from for at least a moment. And I’d love to hear discussions of The Good Death that involve an extreme acceptance of disability to the very end instead of using death to try and get around disability because you fear disability so much. Because nobody ever talks about that choice, and fear of loss of control over your body and mind and many other things disability represents to people feels so obviously connected to fear of death and decay and the like, yet they usually aren’t making that connection…
And there’s always one more quote in “Critic of the Dawn” that requires a tenth, eleventh, twelfth, fiftieth look… I was one of the test-readers for that piece (a task I was wholly inadequate to, especially at that age) and I still find new things in it every time I read it.
And yes, I believe it’s possible to be both a member of The Order of the Good Death and Not Dead Yet, if you wanted to be. And I wish more people were informed by the best of both mindsets. (I know there’s problems with NDY but I’m using them more as a placeholder for a mindset, than a recommendation of membership.) And I’m gonna be out there trying, always. I know the dangers disabled people face firsthand, so I’m never gonna forget where deadly forms of ableism are showing up even if the people doing them can’t see them.
And I also think facing one’s own mortality and the place of death in the scheme of things is an incredibly important thing to be doing, disabled or not. Hence being an avid but mostly closet Deathling. (Mostly closet because I don’t know how to explain the drastic misgivings of a disabled person and it’s exhausting to try.)
In the meantime my memento mori / memento vivere (reminder that you will die / reminder to live, loosely translated) ring. I got it recently as a reminder of everything I’ve been through lately, and the closeness of Death at all times, and what that means for the living.
What do you imagine is happening when you see this scene:
I am lying in a hospital bed, very ill with aspiration pneumonia and starvation. I have a visitor from out of state, someone who recently lost her father to pneumonia and wants to see me just in case. A doctor walks in.
This is a teaching hospital, so he’s not alone. He’s followed into the room by a line of assorted med students, residents, and the like. I call them ducklings, because they followt he main doctor around in a line. Someone online said “Not ducklings, doclings.” So now they’re doclings.
So the pulmonologist — not my pulmonologist, just a pulmonologist — walks into my room followed by a gaggle of doclings, who fan out around my bed. And the first thing out of his mouth is a solemn, “Are you at peace with your decision?”
I say yes.
He repeats his question, “Are you at peace with your decision?”
I say yes.
This keeps happening until he solemnly leads the doclingsgout
What would you assume was going on there?
Because I’d assume that I’d chosen to end my medical treatment and go home and die, or something along those lines.
But that’s not what he was doing.
His question was about whether I’d be at peace with getting the feeding tube that ultimately saved my life.
Guess what, doctor?
I’ve had feeding tubes for six or seven years now.
I’ve had my share of complications. Infections, abscesses, a tube wrapping around my intestine.
I. Still. Want. My. Tubes.
My tubes are life, not death. When you get a feeding tube, nobody should ever treat it as if you’ve just chosen to die. But they do.
For my 38th birthday dinner, I had soup: Sweet Pea (sweet peas) and Super Greens (spinach, broccoli, green peas, and coconut).
Then I had kombucha.
I enjoyed all of it.
And I’d never have reached the age of 38 without my feeding tubes.
So the answer to the question is still the following:
Yes, but your question and the way you’re asking it could get someone killed.
Stop treating people choosing to live as if we’ve chosen to die.
Not all of my thoughts on death and mortality are purely personal. Although this is certainly born out by personal experience, this is much more in the ethical/political realm than my personal relationships with Death itself. And is just as important to the whole picture of how I approach death and mortality, and one reason I’ve been so reluctant to post my actual experiences of Death being a benevolent and friendly force.
If you are disabled. If you are cognitively disabled. If you are developmentally disabled. There are people who literally do not care one way or the other if you live or die. And there are people who actually kind of wish you’d die — some more fervently than others. And there are people in positions of power who will either fail to act in ways they would normally act, or actively push things a little more in the direction of your death (sometimes obviously, sometimes more passively with plausible deniability). And to be unaware of this is to be unaware of serious danger.
These people can work in the medical profession. Many do.
These people can work in agencies that are supposed to give you support. Many do.
These people can work in any major position of power over you. Many do.
And I’m not talking about serial killers, although they take full advantage of some of these situations in all kinds of ways. I’m talking about people who mostly think of themselves as kind of normal.
But they can still kill you with apathy, indifference, and even varying degrees of malice.
My developmental disability agency just announced to me last night things that confirmed the warnings I had been receiving from friends that this kind of thing was at work right now. They want me suddenly doing things I have never been able to do even at my physically healthiest (and they have ample documentation of my inability to do these things), things they have been doing for me for thirteen years without incident until my DPA filed a medical neglect complaint against them.
This is part of an attempt to railroad me into a service model (which requires moving out of my own home and would not get me any better care) that they prefer for me.
This is part of retaliation for filing the complaint, before which there was no talk of railroading me into this service model.
But they know. Perfectly well. That I was struggling to stay alive and stay out of the hospital with the amount of services I was getting. (I have had recent unexpected cascade-effect complications from a surgery and have been going alkalotic at the drop of a hat. Long story. But it’s taken everything I have and every skill I have to stay out of the hospital and alive as long as I have, and I’ve been back in the hospital since Friday.) And they knew that the reduction in services caused by a staff vacation/staff shortage contributed to my ending back up in the hospital. They knew all this.
Then they sent me a letter saying I am no longer entitled to have anything done for me, that I must physically participate in everything.
They know, in detail, that this is not possible for me. They know, in detail, that this would be dangerous for me on multiple levels even without a severe, acute health crisis. They have documentation of every single reason in more detail than they probably care to know, that even moving my body through the motions is physically dangerous to me.
They know these things.
So the only conclusion I can reach when they insist that these things happen anyway, is that whether I live or die doesn’t matter to them.
The fun part is if I do die, I’m sick enough they’ll probably get away with it even if they’re very culpable in the events leading to it.
But my friends have been telling me I might not live out the year the way this agency has been treating me, when I probably would otherwise.
When I say I accept death, it does not mean I accept THIS. This isn’t death that just happens. This is some toxic combination of apathy and malice, and the worst part is I don’t know precisely where it’s coming from. But people have warned me about it just before this happened. And when I spoke to medical professionals about it, they told me this kind of thing is very real and something to always keep in mind.
So this is happening. Now. I am in the hospital. And I got a letter that started out with a basic “Sorry you’re in the hospital” thing and then a “But we’re gonna try to make you do shit that’d probably kill you or land you back in the hospital to try” thing. Which makes the “Sorry you’re in the hospital” part feel completely phony.
I was starting to feel a little better and look forward to going home sometime soon, maybe not as soon as I’d like, but soon. But I can’t go home to being expected to physically do crap I couldn’t safely do on my best day.
And I can’t stress how much someone at some level is perfectly aware what this meansthat they are asking this of me just now.
And that they don’t care the risks to me (even if they think it’ll just push me into accepting their bullshit program) tells me they really don’t care deep down if I live or die. Because people who care if you live or die don’t dangle you over a cliff (or even pretend to do so) to get you to do what they want, even if they think they have a good hold on you. Ever.
And the fun thing is even if you see this, and even if those around you see this, and you see the patterns enough to know what’s happening, you can’t necessarily tell who precisely they are. They may be someone you never meet directly. But people who explicitly range from apathetic to malicious abour your continued existence are out there. And unfortunately in our culture of familial and caregiver benevolence, nobody who hasn’t seen it for themselves wants to believe it, even though it’s something well beyond commonplace.
So you can’t always just point to an Umbridge. Even if there’s an Umbridge, or a small army of Umbridges. (Umbridge got into this post because someone referred to this, after reading the letters, as “Dolores Umbridge-level fuckery”.)
And for the record, accepting death as a whole does not mean I accept this kind of death for an instant. If I die because I’m expected to do crap I’ve never been able to do and is now physically dangerous for me to even be walked through the motions of, that’s not just dying because I’d die anyway. And there’s a huge difference. And I hope I don’t have to explain that difference to anyone. I’ve long said that dying because I’d die anyway is fine with me, but dying out of someone’s apathy or stupidity or malice will leave me the world’s most pissed-off ghost. If I had any intention of being a ghost, which I don’t (not sure it’s possible but very sure that trying would be destructive). But you get the idea.
Shortly after I came home from the hospital, I stood outside next to a tree. I leaned on the tree because the short walk had wiped me out.
I felt my entire body at once. I was shaking. I felt like the thinnest and most fragile leaf, with holes in it. I started to feel transparent.
Light shone through the transparency that affected everything. With it, love, connection, change, truth, things that can never be named or described. Still aware of my entire body at once, the immense struggle it took to physically continue on any level. How close I was to death. Light through the leaves on the tree above me. Light through me invisibly, through everything.
I understand important things through the workings of the redwoods. Things without names, things without words. Redwood Terrace is holy ground embedded in my soul. Under my feet is earth, and roots, and many things unseen. And a connection to Redwood Terrace, outside time. And I am there, as well.
The fungal mycelium people never think about, under their feet all the time. Life, and death, and life, connected, changing, moving, things becoming parts of one another. An old, familiar, comforting promise: If you die this time, if you must step over that edge, we promise, we promise this is in store for you on every level, and if you want, we will eat you, we will change you, you will become life for so many, and on it goes, and this is love, this is our offering to the world.
If I knew I was dying and there were no consequences to these acts, I would put my last ounces of energy and effort into going to Redwood Terrace. I would find a hollow tree or the closest thing, curl up, and wait. The end might be painful, terrible, messy, but nothing is tidy about dying and none of us is guaranteed it will be easy. I would die in the place I have the most connection to. My last act to offer myself over to that place, body and soul. Everything from microbes to plants to animals to fungi would have a feast and I would turn into life, and things would be happening on levels that have no words and can’t be spoken of.
I will never do this. The person who found me. The pointless waste of resources looking for a crime that never happened. These are enough reasons, and there are more. But it’s what I’d want. I’ll settle for being composted and the results returned to the ground as close to the Mother Tree as possible. Nobody is guaranteed the life we want or the death we want. But that is the death I want.
But as I stand there I am aware of that promise, aware of the ancient threads under my feet tying death and life as essential parts of each other. Aware that should death happen there is beauty and love, not fear. How everything left of me can be absorbed into new life and timeless love. Aware how close I stand to the line, aware of the silent, patient presence of Death.
Death by now is an old friend. I’ve had too many close calls not to become acquainted. I once spent five weeks pretty much abandoned to live or die in a series of hospital rooms where for the most part I was unwanted. Doctors have said they’re surprised I pulled through without the ICU that time. I was alone for vast stretches of time, I was delirious and terrified. Death was there, though.
And I came to know Her as kind, caring, a friend. She was in no hurry. She can wait forever, She’ll find all of us one day. But when you sit close to her, sometimes you have choices nobody talks about. Where you could go with Her right away, or try and stay. And nobody would know. Trying to stay alive doesn’t guarantee life of course. I chose Death’s companionship, which doesn’t mean choosing to die. But every time, I chose to stay alive.
It’s odd that a vivid picture has formed in my mind of what Death would look like to me if she were human. She looks very much related to me, like an ancestor I’ve never met who strongly resembles many people on my father’s side of the family. Very old with long white hair. I guess she has some qualities in common with George McDonald’s multiple-greats-grandmother character in The Princess and the Goblin series. She’s very powerful, has the potential to be very kind and loving, and does not actually bear any ill will towards the living.
But She isn’t human and I imagine She looks different to everyone. I’ve never seen Her with my eyes, only had this vivid image of how She would look if human. But really my encounters with Death are more wordless and imageless and impossible to put down in writing, including that endless five weeks of Her. But I can feel when She’s hanging around me, and so can some of my friends. It always means something has slipped too close to completely guarantee survival.
Most people think of the survival instinct as something rooted somewhere in the brain. And there certainly is one there. But it goes deeper than that. All life from the first single-celled organism tries hard to live. Being alive is extremely difficult and takes work and energy. Without some drive for survival, nothing would bother. Every living thing has some version of this drive for survival.
And I am not just a brain, and my brain is not separate from my body, and my body is not just a carrying case for a brain. I’m made of all these cells, some working together, and all kinds of things. Each wanting individually and collectively to live. When I say I chose life, I don’t just mean my thoughts chose life. I didn’t always have enough thoughts to string that kind of choice together. My whole body chose life and fought hard for it and that’s why I’m still here. It seems arrogant to reduce myself to the little part of me that sits and reflects on things, then claim full credit. There’s nothing like delirium to show you the brain is just another body part. And when my mind wasn’t functioning right the rest of me still fought like hell to be here.
I’m well aware the things I’m saying could terrify people. But they are real for me. Death is welcome in my life. This is easily misunderstood, though. I don’t have a death wish. I used to. A grinding, unrelenting one that tormented me every second of the day and caused a big conflict with my survival drive, which I alternately thanked and cursed. That was a long time ago. Certainly long before I befriended Death.
Coming to know Death intimately has been one of the most life-affirming things I’ve ever experienced.
Hello, and welcome to the first post in my Death & Mortality series. You can read my Death and Mortality posts any time with the Death & Mortality Series category on this blog. This post is essential to understanding the context of any post I make about my experiences and viewpoints around death and mortality, so if you’re able to read it please do. It will explain what I do mean, what I don’t mean, and why I am planning to write so much about death at all. And especially this post explains a particular way I do not ever want my posts about death taken or used. So moving on…
I have meant for a long time to write a long series of posts about my relationship with death and my own mortality. But the sensitive and complex nature of the topic has always stopped me. It’s not the kind of topic where my views can be summed up in a single post. At the same time, if I posted some of the things I believe and experience, I worry they could be used out of contexts to support viewpoints that have real-world deadly consequences for disabled people. So I have hesitated to post about it except in certain selective contexts. And I have let many important things go unsaid.
Because death is an important topic for everyone. It’s the one thing that all people are guaranteed to experience. And there are a lot of taboos about even discussing death. So I want to discuss my relationship with death in detail.
But I also want to say up-front that I speak for nobody but myself and maybe any others who may feel the same as I do. (It’s not uncommon, but goes largely unspoken.) And that I never mean to imply that my experiences ought to be the same as another person’s experiences. Your relationship with death is deeply personal. Everyone has a different one. That is not a bad thing. Lots of people see death very differently than I do. Lots of people experience their own mortality and that of others in a very different way than I do. That diversity of experience is probably a good thing. I in no way intend to say that everyone can or should view their own death or that of of others in the same way I do.
That said, I do have certain views about death that go beyond the personal. For instance, my views on the way disabled people face ableist assumptions that kill us on a regular basis. Those are not just my personal views about facing my own mortality. Those are views that I do think are important on a wider scale than me and people like me, because those ableist ideas are out there killing people every single day. They have almost killed me more than once. And I draw a distinction between what’s essentially a political standpoint (my views on death and disability), which is intended to be taken broadly, and things that deal with my very personal, very subjective relationship to death and my own mortality. Hopefully you can understand there’s a distinction here, even if the two have some overlap.
And it’s that tension between a very private and subjective personal experience, and a political view about ableism that is already killing people, that makes this such a difficult topic for me to discuss. Because my relationship with death is extremely friendly in nature, my views of death are very positive. But part of that deadly ableism out there is the idea that disabled people are better off “accepting” death, or just plain better off dead. And I don’t want my personal acceptance of death to ever in a million years be used to justify the idea that disabled people should just accept our fates to die and not fight for our lives like anyone else would. That’s not the kind of acceptance I talk about when I talk about my personal acceptance of death, and anyone using my personal acceptance of death to justify DNRs for all disabled or potentially disabled people or something is flagrantly misusing my words out of context to support things I would never support, and will be treated as such. (And no, I will never have a DNR, that’s not what I mean when I say I accept death.)
But the real reasons I want to talk about death are more related to the unexpected personal experiences I have had along the way. Far from feeling morbid, my relationship with death has long been extremely life-affirming. And while it may sound like and dovetail well fo the most part with certain viewpoints out there that are becoming more popular or at least more openly spoken of, there are sometimes differences that are important. And everyone’s various experiences of these things are important, and not things that should have to be hidden in the shadows to make a death-terrified society comfortable. Nobody should have to talk about these things in public, but it should be something people can have a public discussion about.
Obviously the topic is also highly emotionally charged for just about everyone. Most people have strong feelings about death whether they think about it regularly or not. It’s something everyone encounters and has to grapple with, and everyone responds to in different ways based on everything from personality to culture to personal experiences in life. Our own mortality shapes us, the loss of loved ones shapes us, and these things can make death an extremely difficult topic. So does the fact that it’s in many cultures something you’re just not supposed to talk about. And where there are often rigid views that people are expected to hold. So I totally understand how emotional and difficult discussions of death can be for people in a huge variety of ways.
Also, my posts may get into specific religious and spiritual views, or things that sound like religious and spiritual views, that are personal to me. All cultures and religions have extremely varied views on death, and many people are atheist, not religious, or have very specific personal views that don’t follow any particular religious view. I respect all of those viewpoints and how they can differ both between and among themselves. Please respect my own views, and that my holding and discussing those views does not mean I am trying to force anyone else to believe the same things I do. These things are, again, very personal.
All of these things have made making even one of the posts I want to make, very difficult. But I do want to make a series of posts dealing with death specifically. And writing this, so you understand the context I’m doing it in, is the first step. And the step that has kept me from writing any of the others.
I don’t know how fast I will write more posts, or how many I will write. Whether I write one or dozens, be aware that each is only a small piece of a larger whole. Some posts may even seem to contradict each other at first glance, especially if you’re unfamiliar with views similar to my own. (People often expect one view to be clustered with a bunch of other views in a certain way, and my views on just about anything do not tend to follow those expectations very well. It makes it hard to communicate sometimes.) Like many people would be a little confused by I completely accept death and even welcome it as an important and beautiful part of life and I want to live as long as I possibly can even at costs other people would find unacceptable coming from the same person. But those are viewpoints I hold and they don’t actually contradict each other. And many people assume the only reason someone could possibly want “extraordinary measures” medically is an extreme fear of death — not true either. So just… please try not to assume too much from a single post, or you’ll get confused. If I could make one post that summed up everything, it would’ve happened already.
I’m making a series of posts about death and mortality. I don’t know how long it’s gonna be. You can find it in my Death & Mortality Series category.
Some posts will deal with highly personal views.
Some posts will deal with more broad political and ethical views, especially around disability rights and deadly forms of ableism. When it comes to these broader topics I am going to sometimes say when I think certain views and policies and systems actually harm and kill people.
Each of us deals with our own death and mortality differently for a huge number of reasons, and just because I deal with mine a certain way doesn’t mean I’m telling you that you have to deal with yours the same way.
I respect the many different cultural, religious, and spiritual perspectives that exist out there regarding death, please respect mine. In stating mine I’m not trying to say yours are bad or that everyone should share mine.
Please understand each post is once piece of a complicated issue.
If this is too intense for you, feel free to skip it.