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
I had an ISA meeting. That’s Individual Support Agreement. At the last second, they brought a Surprise Administrator. That is what I am calling the lady who showed up at the door to the meeting even though I’d been told that the only people present would be Laura (my DPA and soon to be adoptive mother) and my two case managers. Surprise Administrator (SA for short) was someone who works in the Howard Center administration. Surprise because they didn’t tell me she’d be at my ISA meeting until she was at m
The ISA is Vermont’s version of a person-centered plan. It, of course, just like in other states, does not have to be either a plan or person-centered to qualify as a person-centered plan. The meeting was certainly not very person-centered. It degenerated into a shouting match mostly. And a lot of it was the Surprise Administrator telling me that I was off-topic. At my own ISA meeting. When attempting to explain my ISA goals. Which were “off-topic” because they didn’t like
So it was good that there was a moment of comic relief in all that because otherwise it was just a shitshow that went nowhere productive.
This moment of comic relief came at an unexpected time.
I had defined my first goal as survival.
I meant it.
I actually had specific, concrete actions I wanted taken in order to get to that goal, but the Surprise Administrator was busy telling us that this was impossible.
So at some point an exchange very close to the following took place between Laura and the Surprise Administrator:
Surprise Administrator: Survival isn’t a goal. Laura: Yeah it is! Surprise Administrator: It’s a vague goal. Laura: What’s vague about it? If her heart keeps beating… Surprise Administrator: Yeah but some people define survival differently than others, like some people define it as being hooked to all kinds of tubes and vents and stuff. Me: (silently but firmly pull shirt up to show two feeding tubes and an ostomy bag) Surprise Administrator: OH MY GOD I DON’T NEED TO SEE THAT PUT YOUR SHIRT BACK ON RIGHT NOW!
After the amount of sheer bullshit that went on in that meeting, I can’t even try to make myself feel bad about the amount of giddy, giggly, juvenile pleasure I got out of that incident. Especially given how sleep-deprived I was at the time.
So later on I discovered the best Twitter hashtag ever: #GetYourBellyOut.
It’s the complete opposite of the Surprise Administrator’s hashtag, which I imagine would be #PutYourShirtOnMel.
The idea is people with ostomy bags are supposed to pull up our shirts, take selfies, and post the pics on Twitter under the hashtag #GetYourBellyOut.
It was started by a guy with a colostomy. The point is to reduce shame and stigma around colostomies, ostomy bags, stomas in general, etc. It’s mostly about colostomies but can apply to anyone with similar things. My ostomy bag goes over a healing jejunostomy stoma after the tube was removed, and I’ll continue to need an ostomy bag to catch the bile until it heals. Which could be months.
So this is the picture I posted to #GetYourBellyOut:
Which is basically, in the above picture, roughly the same sight the “PUT YOUR SHIRT BACK ON” comment was inspired by.
I’m just… highly amused there’s a hashtag for exactly what I did spontaneously out of frustration.
I’m a huge fan of anything that makes people realize that bags, tubes, holes in weird places on the human body, and the like are a normal part of life for a lot of people. And not a cause for excessive bellyaching (oh come on, I had to say it) about having to see it…
Sorry I can’t write out the lyrics. Kruschshev must’ve really made an impression on Tony Carey as a kid, he’s always referencing the shoe-pounding incident. I don’t know if I’ve ever shared my collection of Cold War songs in its entirety or not, but this is one of them. (The vast majority are by this artist, he did a lot of Cold War inspired work both under his name Tony Carey and his sci-fi/historical dystopian band name Planet P Project which was basically just him with a synth and a lot of time on his hands.)
I find it interesting to hear the perspectives of different people who were there, writing songs about the Cold War during or shortly after the Cold War. I’m at the tail end of the Cold War generations (I’m about as young as you can get and still have understood what was going on enough to absorb the historical context despite some massive comprehension problems on my part) and this guy is from close to the other end so it kind of bookends things for me.
To me, the end of the world is nuclear war.
Like. Those two things mean the same thing
It’s taken me time to realize there are other ends.
It’s taken me even longer to realize the end of the world is not the end of the world.
It’s taken me even longer to convince anyone that nuclear war never stopped being a threat. I never understood why everyone was so fast to think we were safe when the Cold War ended.
Like. No. Really. I knew those nukes didn’t just vanish. I knew the technology didn’t just vanish. I knew the nature of modern human cultures didn’t just just vanish. I was a kid but I wasn’t that oblivious to the world.
I wonder what Armageddon today’s kids are inheriting.
Understand I didn’t first hear Armageddon in a religious context. It was another word for nuclear war. I had no idea it was a religious metaphor or what religion it came from.
So I wonder what Armageddon means to today’s kids.
Does it mean this?
They were beginning to tell us stories like the above when I was a kid, but it was harder to grasp or believe. Especially since I associated environmentalism with upper-middle-class and rich snobs trying to one-up each other’s status symbols. So I had an aversion to taking them seriously.
This last song, I take as a call to action, to say, “This will happen if we don’t do something now.
But a friend warned me that the tone of the song can also signal despair, and stop people from hoping, and stop people from believing they have any obligation to carry on even in the face of loss of hope.
And I can see that.
So I’d remind people that the fact that each of us individually will die does not absolve us of our responsibilities while we are still alive, it only underscores them. Because there will always be those who come after us.
And I’d remind people that the same is true of us as a species.
It still matters what we do for each other right now, because each of us matters right now.
It still matters what we leave for the next generation, and how hard or easy we make something that will never be easy.
It still matters, even in the event of extinction, what we leave for other life that may come after us.
It still matters what we do now. Because everything now matters.
It still matters what we do for the future. Because the future is not just any one of us, and it is not just all of us, it is a whole world, a whole universe, it is things we can’t understand or anticipate, and what we do has an effect and matters to all of that.
It matters because we are all on Julian of Norwich’s hazelnut together — this one tiny fragile nut that we have to take care of because it’s all we’ve got. And if you think she lived a long time ago in simpler times, a reminder she lived during the frigging Plague in Europe, which sure looked like the end of the world at the time.
And just as death was considered a marker of social equality back in those days, another song from my Cold War collection references nuclear war just before saying “Ashes and diamond, foe and friend, we were all equal in the end.”
Wow I’m cheery today.
I actually love the symbolism of the Danse Macabre, though. For real. It says that death is the one thing that happens to every one of us, that makes us all equal. It’s an art form depicting dead people dancing together, from all walks of life. The Plague got people thinking that way. That’s bleak optimism for you.
As far as I knew, growing up, the world ended with a flash. The only difference you got was whether you were at the center of the flash and died quickly, or a further distance away and died slowly. On 9/11, I was sure from FBI chatter (and lack of communication device) that I was headed towards the center of the flash. I was a lot of things, but I wasn’t afraid. I’d been ready for it my whole life. It only took minutes to adjust to the “okay it’s finally happened, no time to feel bad about it” mentality.
It took a lot longer to adjust to the reality of what’d actually happened. But I was baffled by all the people saying “We’re not safe anymore.” Safe? Since when were we safe? Did everyone forget so fast? And honestly what happened for real was a lot less bad than what I imagined when I heard the snippets like “Plane headed for the Pentagon” and “We think downtown San Jose will be a target, we need to shut down San Jose” and people standing on street corners waving newspapers with “ATTACK ON AMERICA” in giant letters.
I mean — there was no context for planes flying into buildings, and anyone old enough to be reared on Cold War propaganda and unable to get access to the real news was gonna come to one conclusion. My dad was coming out of an isolated part of the Sierra Nevadas and came to the same exact conclusion when the planes stopped flying over (he memorized plane routes and used them to help orient to both time and locations) and he could only get patriotic music on the radio.
And now we’re facing so many different ends.
And yet none of the ends are ends, if we look beyond ourselves, just as our own end isn’t the end, if we look beyond our own personal death. And even what looks like the end of the species may be survivable for small tiny numbers of scattered people. But end of person, end of most of our species, end of our entire species, end of many species, whatever it ends up being — we still have a responsibility right now. To everyone who still exists, to everyone who will exist, to everyone within our species, to everyone beyond our species. We have a responsibility. That never goes away.
As for despair, this is worth keeping in mind:
It is not despair, for despair is only for those who see the end beyond all doubt. We do not.
Gandalf the Grey, J.R.R. Tolkien, The Fellowship of the Ring
I know I’ve said all this before. But some things are worth repeating. And the memory of the Cold War seems worth keeping alive. Different eras in history shape not just big forces in the world, but also the lives and beliefs and perspectives of small people everywhere. And those lives and beliefs and perspectives and memories are, each one of them, vitally important. They are what history is really made of — each one of us, not a single one invisible — and why history matters.
I watch a lot of standup. I watch good standup, bad standup, everything in between. I just watch standup whether I like it or not.
And I vastly, vastly prefer the comedy that allows for dick jokes and other things that aren’t considered ‘clean’.
Because it’s less likely to seriously offend me.
Because people with intellectual and developmental disabilities are acceptable targets of ‘clean’ comedy. So when they get rid of all the dick jokes and all the stuff that’s socially unacceptable and ‘dirty’, they’re left with acceptable targets.
Which includes me.
And no, hating r-word jokes is not the same as censorship or not being able to laugh at myself. I laugh at myself, and at disability, all the time, to the point it makes a lot of nondisabled people really uncomfortable.
The issue is that most r-word jokes are hate.
They’re not meant in good fun.
They say “You’re not a human being.”
It doesn’t matter if you cloak that message in humor, it’s never okay.
The primary targets of the r-word are people with intellectual disabilities. But it has a broader range than that — it’s aimed in general at a group of people who are harder to define. Anyone who can be easily mistaken for someone with an intellectual disability, certainly. And anyone who’s been, in the imaginations of most people, sort of lumped together as this blob of people who aren’t really human beings. That includes most people with developmental disabilities, some people with cognitive disabilities, and, as I said, it’s a group whose borders are fuzzy and indistinct. But we’re all lumped together under the r-word in the imaginations of the people who use it. It’s not a diagnosis, it’s a slur.
And I don’t use the word slur lightly.
To me, for a word to be a slur, it has to be a word that contains within it the notion that the people targeted by it are not really people or human at all.
It can’t just be an insult that’s often thrown at a particular group of people. It has to be more than that.
The r-word is probably the slur I have absolutely the least tolerance for.
People have been calling me the r-word since I was a child.
My voice sometimes has ‘that tone’ in it that people associate with the r-word. A sort of ‘dullness’. People imitating my voice have always taken advantage of that. And they imitate my posture and mannerisms as well.
By the way it’s very fucked up to have a common mannerism associated with people like you, be the actual American Sign Language word for the r-word.
But you don’t need to speak ASL to use our mannerisms and tone of voice against us.
And yes — people used the r-word on me even when I was technically classified as gifted. In fact, they told me “Gifted is just what they call [r-words] to convince them they’re doing well in school when they’re really going to special classes.” I’m not the only person I know with developmental disabilities who was told this growing up.
I was also told I looked like a [r-word] as a way to get me to behave more normally. It didn’t work. I never had any idea what they were talking about. (I also got called “blind” and “psychotic” in similar circumstances. There was always a tone of complete disgust, like I was a dog who’d just shat on the table at a fancy dinner party or something.)
At any rate, r-word jokes aren’t funny. At least, not the ones I’m talking about.
And the fact that they’re considered perfectly acceptable for ‘clean’ comedy to the point they seem more common there than in the ‘dirty jokes’ kind, says a lot too much about the society we live in.
R-word jokes are an expression of hate, not an expression of humor. It’s not just the word, it’s the way it’s used. It’s the acceptance that those of us targeted are not human beings. It’s the knowledge that every time someone accepts this kind of hate into their mind, people like me are at more risk of bullying, abuse, hate crimes. And that most people don’t even register it as hate. Even though it’s some of the most horrible and dangerous hate I’ve ever seen.
Sacha Baron-Cohen says, “I am exposing. I am airing prejudice.” The only problem is that the people [who] are laughing, are not laughing at the prejudice. They’re applauding the prejudice! When the joke is “Throw the Jews down the well, kill the Jews” it’s not funny. But even if it was funny, they’re applauding it.
Abraham Foxman, “The Last Laugh”
I agree with a lot of the people on “The Last Laugh”. It’s a documentary about where the line is between acceptable and unacceptable topics for humor. I don’t think there’s unacceptable topics for humor, but I do think there’s more and less acceptable ways to handle them. And a lot of it depends on who is saying the joke, how they are saying it, and what they are saying.
And when I talk about r-word jokes, I’m talking about people without any of the disabilities covered by the r-word making jokes at our expense. Telling a joke that has real-world consequences and hiding behind “It’s just a joke” is both cowardly and dishonest. And I feel like there’s a tradition among comedians to hide an immature impulse to do whatever you’re told not to do, behind some kind of pretense of moral nobility.
Give me a good dick joke any day. Seriously. Sex can be funny. Hate isn’t. At least, expressing hate is not funny. Tell some good jokes about asshole comedians who think hating people with I/DD is ‘clean’, though, and I might laugh.
I’ve probably said this before. But it’s so important I feel like it needs a standalone post.
I talk a lot about the dystopian hell that exists beneath the shiny surface of the developmental disability home and community-based service (HCBS) waiver system. Because I live in this hell. Because people living in this hell don’t get heard from enough, especially online. Because if something terrible is happening to me, it’s happening to the other people in this system as well. All kinds of good reasons.
But people misuse the horror stories coming out of the HCBS system. They use them to say that we need to bring back the old system. Traditional institutionalization. Or new shiny variants on it like those farm-based “intentional communities” — a weird word considering people don’t get a choice as to whether to live there. Those are still institutions, by the way. So are large parts of the HCBS system. Institutions are determined by who has what kind of power and control, not by the shape of the building or the number of people living there.
To be very, very clear.
The horror stories coming out of the HCBS system all come from the things HCBS has in common with traditional institutions.
So the problem is not that we have moved too far away from traditional institutions, and need to move backwards to make things better. The problem is that we have not moved far enough away from the practices of traditional institutions. The solution is to be less like a traditional institution, not to bring back traditional institutions.
Oh and about that “bringing back the institutions” thing. I know a lot of the larger institutions closed. But not all of them did. It’s not like we just have a world empty of traditional institutions, so “bringing back the institutions” is a concept that doesn’t quite make sense. We’re still fighting to close them.
But we have to replace them with something better, or people just get moved from one kind of hell to another.
And we’re supposed to be so grateful for this that we don’t complain about the things that have stayed just the same as traditional institutions. Which is a whole lot of important things.
The problem is not that we have left traditional institutions behind and need to go back to them. The problem is that we have not gone far enough away from them and we need to become even less like them.
Anyone using HCBS horror stories to promote traditional institutions is coming at the problem bass-ackwards. HCBS horror stories should cause people to want to close all the traditional institutions and make services resemble old-style institutions as little as possible. On a deep level involving power and control, not on a cosmetic level where all you’ve done is slap some new decorations on the walls of the old system.
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.
I haven’t hit on exactly the right foods to eat, yet, or maybe the right amounts. But what I’m eating is both so much better for me than the Nutren was, and feels so much better, that I wanted to tell people what my current set of foods generally looks like. Note that I am not telling anyone else what to eat — what food works for someone varies so much by person, culture, and circumstance that I’d never presume to tell anyone else what they ought to be eating. Plus it’s much healthier (and happier) to not worry about food too much than to spend all your time freaking out about whether you’re eating the ‘wrong’ kind of food or not.
So there’s several elements that go into most meals. I don’t eat the exact same thing every time though. I sort of have an overall category, and then I can pick and choose what I want from within that category. So generally my food looks like this.
Food (combo of something from each category put into high-powered blender with water, then chinois, then feeding pump):
Beans: Black beans, black-eyed peas, lentils, split peas.
Texture vegetable: Squash (any of a huge number of kinds), sweet potatoes
Green vegetable: Spinach, collard greens, peas, asparagus
Seasoning: Soy sauce, Sriracha, fish sauce, assorted kinds of chili peppers, spices, sauces.
Other things: Mushrooms, seaweed, rice, sunchokes, assorted veggies.
Drinks (usually put directly into feeding tube with a syringe, sometimes put in feeding pump):
Tea (mostly green or oolong)
We started calling certain vegetables texture vegetables because at first we were so focused on getting me enough beans, that the texture of the resulting soup felt and behaved like cement once it got into my guts. So we found that adding squash or sweet potatoes got rid of some of that cement quality. Not that that’s the only reason I’d eat squash or sweet potatoes, but that was definitely the original purpose they served.
Anyway, while this is far from perfect, it’s so much better than eating Nutren, and I’m satisfied with it more or less. I also like that unlike Nutren, I can vary foods within each category very easily. So I get more of a variety in my food than I did on Nutren.
I’m not a vegetarian and have no desire to become one. But my food ends up being mostly vegetarian for a couple reasons.
One is just that I prefer vegetarian foods most of the time. Not for ideological reasons, but I just like it better than meat. With notable exceptions usually involving hot pastrami sandwiches.
The other is that since I’m fed by J-tube, my food takes a long time to get into my body. That means it’s sitting out in a feeding bag for hours while it goes through a feeding pump into my body. Meat goes dangerously bad faster than, say, beans. So hanging blenderized meat in a feeding bag is usually more hassle than it’s worth.
But I do use meat or animal products in limited ways. Like I’ll fry mushrooms in fish sauce. And if there was a nutrient I was missing that’s most easily found in animals, I would have no problem supplementing with an animal product to get that nutrient.
Also, I do like my food to taste good. I always make sure that the soup (what I call the resulting liquid that happens after you put all these ingredients in water in a high-powered blender and then strain the results through a chinois) is seasoned in a way where I’d want to eat it even if I was eating it by mouth. Bonus points if I can convince people with functioning stomachs to eat it on purpose.
I swear that matters. It matters that the food smells and tastes good, even if I never smell and taste it beyond the taste test at the beginning. I don’t know if that has any medical benefit, but you don’t just eat food for the medical benefits. You eat food because you like it. And making my food enjoyable really frigging matters. It matters for both disabled and nondisabled people: You should like what you eat, when possible. And that shouldn’t have to change just because you’re fed through a tube.
One thing that I really hate about being tube-fed is the fact that my food is treated as a medicine and eating is completely medicalized. The Nutren is listed in my medical file as medication, not food. Regulations state that I need a note from my doctor to allow Howard Center staff to put blenderized food into my feeding tube. Which has to do with the nurse being able to keep her license — she finds this all as absurd as I do.
When I’m in the hospital, how I get water or coffee has to be written up by doctors. If I disagree, I am not technically allowed to, say, vary the timing of water flushes during tube feeds. I have to argue with a doctor about water because it’s suddenly a medical treatment rather than just drinking water. And I have no medical reason for fluid restriction, so they don’t even have that excuse. It’s entirely because the water goes into a tube rather than into my mouth, even though it’s getting to the same place in the end.
Anyway, one of the biggest antidotes anywhere to seeing food as medicine, is to prepare the food for the blender in the same way you would prepare an actual meal. You want it to taste good, or smell good. You want it to be something you’d be willing and even eager to eat if you were eating it orally. These things aren’t trivial or afterthoughts. They’re a serious and overlooked part of being tube fed.
I don’t think it’s generally a good idea to ignore this and pretend like your food is a some kind of laboratory experiment. There’s nothing wrong with eating a feeding formula if that’s what works for you, but if it doesn’t work for you, or you’d just rather for whatever reason use blenderized food? It’s important where possible that the food be enjoyable and not just a chore you have to get done. Or at least, that it not be actively unenjoyable. Food is not just physical or medical. It’s emotional and cultural and lots of other things. You ignore that at your peril.
Anyway, I’m looking forward to my nightly tube feeds instead of dreading them like I used to. That in itself is a good sign. In the end it doesn’t entirely matter (except between me and my doctors) why Nutren made me so physically miserable and the food I’m eating now doesn’t. What matters is that I’m eating food I enjoy and that I seem physically much healthier this way. And that I’ve found a way to make it work even with a feeding tube.
I’m finding that there are many posts that I want to write and can’t. Because they all require explanations. Well, they don’t require explanations. But without explanations, they can create a lot of confusion. And then people don’t know what I mean by things.
But then the explanations are hard to write, too. So a post that would be easy to write without an explanation, just doesn’t get written. Because the explanation would be much harder to write than the post itself. But without the explanation, the post itself isn’t going to make sense to people.
And yeah this mostly goes back to language use. And having to explain practically every word I use to make sure people know exactly what I mean by it. And maybe if people would acknowledge that English is a living language, it would help. And maybe if people would acknowledge that words have multiple meanings, it would help. And maybe if people wouldn’t try to force words with twenty meanings to have only one meaning, it would help. And maybe if people would realize that the same word can have a different meaning for each person who uses it, that would help. And maybe if people would recognize the existence of language disabilities (which are not always readily apparent to the average person), that would help.
But for a lot of people — they don’t. So you have to explain everything, or risk being so grossly misunderstood that it’s almost better to have written nothing. Because if you don’t write all the explanation, they can literally take you as meaning the opposite of what you actually said.
It took me forever to write that post dealing with how I use different words regarding genderlessness, and that was one of the easiest of such explanation posts I had planned. There’s another one I have to write now, that’s twenty times as hard even though it’s mostly only about one word. This kind of thing makes me want to give up on language and hide under a rock. At least there might be interesting fungus under there.
Normally I don’t have that much of a problem with clichés, depending on context. Quite often, something’s a cliché because it really is true, so it’s been repeated so often because it’s a reasonably accurate way to talk about reality. But then there’s this other kind, which grates on my nerves…
There’s two of them, actually, but they kind of work in parallel.
There’s the standard cliché platitude they give you when you’re in the hospital and you’re pissed off about something. it runs something like this:
“It’s so hard to come in here and have to give up so much control you normally have over your life, isn’t it?”
Well yes, and no.
Yes, the hospital takes control away from you in ways that are completely unnecessary. Like, things where there’s no actual reason for you to give up control. And where giving up control can be not just annoying, but dangerous. But that’s far from the only reason a patient in the hospital might be pissed off at the hospital. And they try to make it sound like it’s all a personal problem, with a personal solution. And that solution is to give up control over your life gracefully, even when it makes no sense to do so.
I encountered one today that I hear less often, but that seems to stem from the same basic source, and have the same basic problems to it.
I have a staff person who’s leaving. She’s worked for me for longer than five years and knows more about my care than either me or my case managers. She does work that technicallly the case managers should be doing. They sometimes call her a third case manager. But in reality they seem to have very little idea the sheer amount of work she does, and knowledge she has.
Anyway, I am very concerned about the way management seems to be handling her leaving. Normally when a regular leaves, especially someone known to be knowledgeable about a lot of things, their last month at the least, is filled with training and searching for replacements. That does not appear to be happening. She is not getting the kind of leaving that a regular staff without her degree of knowledge gets, let alone one with the knowledge she has.
I confided my nervousness in someone.
They said, “Change is always hard.”
That is not what is going on here.
I am more prepared than most people for the turnover rate in this field. I have felt lucky the last several years to have staff who lasted for months or years. Dave Hingsburger describes the turnover in the DD field as “Thursday” and he’s right.
I have learned to balance everyday emotional connection with professional distance, so that I don’t feel hurt on a personal level by staff changes. There’s people I’ll miss more than others, because I’m human and so are they. And I will miss Hallie a good deal. Just as I miss Zack and Rick. There’s some people you do form a connection with. But it’s a paid relationship, not a friendship, and you forget that at everyone’s peril. Pretending it’s a friendship hurts everyone.
But at any rate.
The problem isn’t a personal connection I’ve formed with Hallie.
And the problem isn’t that change is hard.
The problem is that every time Hallie even goes on vacation, I end up with some kind of health crisis. And management at Howard Center doesn’t prepare either me or other staff for the sheer amount and kind of work required to make up for what Hallie normally does.
Just as an example, last time she was on vacation, there was a doctor’s appointment. And there was something urgent that needed to happen before the appointment — some blood tests. I texted my case managers, and was basically told to handle the communication with the doctor’s office myself (something I can’t do), and otherwise to just wait until the appointment to get the blood tests (which defeats the purpose of having the results of the tests available by the time of the appointment). And the whole thing was said in a casual manner, as if I hadn’t just been hospitalized and wasn’t about to be hospitalized again for problems the blood test was testing for.
If Hallie had been there, she’d have been in contact with the doctor’s office, and would’ve immediately taken me for the blood test. Things would’ve gotten done. But she wasn’t, and they didn’t. And even the doctor’s appointment was a mess because of lack of preparation.
And that’s just one example of what can go different.
She’s leaving for good now.
The case managers have not spoken a word to me about her leaving.
They apparently plan to put me on the “floater model” so that I won’t have a regular staff person at all. Which for someone with my degree of medical issues, is a disaster. I need someone with a stable level of knowledge about how my body works, not someone who changes every month.
Nobody asked me.
They never do.
I wouldn’t have even known if Hallie hadn’t told me. Either about her leaving or about the floater thing.
They’re not training replacements. There won’t be a replacement. I was not asked or even consulted about what I thuoght was a good idea.
Major things are going to change.
They want this to happen.
Everything they do lately seems to be an assertion of their power and control over my life.
It reminds me of this chart, modified from the beginning of Behaviour Self! by Dave Hingsbuger:
Behavioural language of person with a disability
English language translation of behavioural language
I want control.
Spitting out food
I want control.
Kicking the furniture
I want control.
Swearing at staff
I want control.
I want control.
Refusing to participate
I want control.
Care provider lingo
English language translation of care provider lingo
I am concerned about your behaviour.
I want control.
This programme is for your own good.
I want control.
You need to learn to be appropriate.
I want control.
Locking you into time out is helping you.
I want control.
I’m sorry but because of your behaviour you have lost your commmunity outings, family visits, favourite foods, favourite television programmes, access to your bank account, visits from your boyfriend, access to an advocate, the right to vote at house meetings, access to the telephone, all of your civil liberties and any personal dignity you have left.
I have control.
This kind of power struggle is going on right now, but nobody will acknowledge it. But they are finding every possible way they can manage, to tell me they are the ones in control of my life.
And this kind of loss of control is a huge problem. Not a platitude. Not something that it’s reasonable to adjust to. Lacking control in the ways I lack control over my life, in the ways people in the developmental service system lack control over our lives, is another one of those little crimes against humanity that gets overlooked because everyone accepts it as normal.
So no, I’m not gonna accept this gracefully.
I’m not gonna accept it at all.
And that’s not because I have a character flaw that prevents me being gracious and accepting my fate and all that. And it’s not becuse I have trouble with change.
It’s because I have enough normal human reactions left in me that it bothers me to be treated as subhuman, and to see other people treated as subhuman. (I know if they’re doing something to me, they’re doing it to others. They’re not as individualized as they make themselves sound. Most of my problems with them come down to human beings not being plug-and-play.)
And I’m getting really tired of Howard Center treating me like there’s something wrong with me for wanting the same control over my life that everyone deserves. The kind all of them have and would be furious to have even an inch of it taken away.
I’m actually becoming a lot more medically stable. I’m getting to where I can finally do a few things that aren’t directly related to medical problems. In the past, my feeling better combined with Hallie leaving would mean that they were supporting both me and Hallie in getting ready for Hallie to leave. As in, even just on a practical, logistical level, they would be helping us both prepare and vet new staff.
That’s not what’s happening.
Yet in their interactions with me these days, everything seems to translate to “I have control.”
People shouldn’t get used to being treated like this.
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.