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.
When you’re a slob, you don’t have to tell anyone that the reason you never did laundry in 9 months is because you didn’t know how despite being taught just as well as your brothers.
When you’re a slob, you don’t have to tell anyone that if you don’t change clothes for weeks or months on end it’s because dressing yourself has always ranged from difficult, slow, and exhausting to impossible depending on the circumstance.
When you’re a slob, nobody has to know that you actually don’t know how to shower, no matter how long you stay in there and go through the motions.
When you’re a slob, people think you’re gross but they don’t think you’re incompetent. They think you’re the sort of person they don’t really want to smell, but you’re neither disabled, nor like some of the spoiled brats you went to school with who could’ve taken care of themselves but always had someone to do it for them so never learned.
When you’re a slob, people think you make bad choices but they don’t think you’re pathological.
When you’re a slob, people find you sort of relatable as a human being still.
When you’re a slob, and only a slob, they don’t tell you that you can’t live on your own and need your civil and human rights taken away for your own good.
There are other consequences to being a slob, mind you. But sometimes it’s easier to be a slob in other people’s eyes — someone who’s made a choice, even if one they think is lazy and morally wrong — than to be a retard. And I’m using that word advisedly, because that’s the word they’re thinking about you, not something sanitized and pretty.
And when you’re a slob, you can convince yourself you’re in control of all this, even if you’re not.
But seriously. When you’re a slob, you get to be a human being. Sometimes it’s just easier to say, “I’m a slob,” “I’m such a procrastinator,” “I don’t care about my appearance,” “I’m so gross,” whatever, keep it relatable, keep it human, but it’s a lie.
Because I don’t actually want to live in unsanitary living conditions. I don’t want to laugh it all off over and over again. I don’t want to watch my remaining functioning crumble out from under me because I’m physically and cognitively unable to keep my environment uncluttered enough to function. These are not situations I have ever wanted.
But I’ve endured them. Over and over again. Allowing people to believe what they will.
For so many reasons.
So I could retain the dignity of being considered merely a flawed human being and not a walking pathology.
So people wouldn’t declare me too incompetent to live on my own.
So many reasons.
And then I’ve watched a friend with a developmental disability get told that the infected ulcers on her legs were the result of a “lifestyle choice” — both by Howard-Center-appointed testers who refused to acknowledge she was unable to bathe herself, and by VCIL who at the time catered to wheelchair users and she “only” used a cane — and I’ve wanted to spit nails.
Because that’s the fucking flipside, the catch-22 of being a slob.
Is they can just call you a slob when they want to deny you help you need. Help that may be at the level of survival, like it was for my friend with her infected leg ulcers. Like anyone would be so much of a slob that they’d get infections on their legs and go to the trouble to seek help to get services to get help bathing. That’s not how it happens, people.
But all these things have a catch-22 angle to them.
Admit you need help and they’ll ‘help’ you right out of your right to live in your own home.
Insist on your right to live in your own home and they’ll hold you to impossibly high expectations and try to deny you help and call it a ‘lifestyle choice’ when you can’t do the things.
Be a slob and be denied help because slobs don’t need help they just need a kick in the pants for their laziness.
Admit you’re not a slob and if they believe you, you might be shunted into a nightmare world against your will.
There are no right ways to be developmentally disabled around here.
And I’m hearing horror stories. About people suddenly being pushed to do things on their own they’ve never done before. And if they manage it even once even for a little bit, they’re told they don’t need help, sent on their way, hours cut partially, or cut out of services altogether.
There are no right ways to be developmentally disabled around here.
We aren’t supposed to exist anymore. We’ve become too inconvenient. We’re the reason their agencies even exist, we’re the reason they have a paycheck, but we, ourselves, as people, as messy human beings who need their assistance to survive, are too inconvenient. So they’re Xing us, one by one. Or trying. We need to resist Xing with everyting we’ve got.
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.
I’ve experienced this for a long time, but several years ago I met a doctor who really brought into focus what the problem was. It’s one way ableism can turn deadly, but you can’t always catch it because it sounds almost like normal medical advice.
I had a GJ-tube at the time. This is a tube that goes into one hole into your stomach, but contains two sections, one of which ends in your stomach, one of which ends in your intestines. This means that part of it winds through the inside of your stomach into your intestines. But the stoma (hole) itself is just a single gastrostomy hole.
Anyway, I had two separate and unrelated problems.
One, the part of my tube that went into my intestines was rubbing on an ulcer right over a blood vessel, so a lot of blood was coming out of the tube.
Two, a giant nasty abscess had appeared on my stoma practically overnight. Like one day it was a red spot, the next day it looked like a blister, the next day it was this giant two-inch monstrosity that had popped in several places and was oozing pus everywhere. To make matters worse, it appeared to have a hole that opened deep into the stoma, so that stomach fluid flowed into it, making it impossible to keep clean.
I was seeing a surgeon to see what, if anything, he could do about the abscess. Which, at this point, had been there for two months. (Antibiotic scripts were being mismanaged which made it last far longer than it needed to and in potentially dangerous ways, according to the infectious diseases specialist I finally managed to see after four months of this.)
His immediate response:
“I can’t do anything. Even if I could get rid of it, you’d just get another.”
This seemed like an odd statement to me. I’d had my tube for years and never had more than minor skin complications. I got compliments all the time on how well I took care of my stoma. This was the only time something like this had happened. And even if it was likely to happen again, that seemed like no reason to allow a giant painful disgusting infected pusball to fester indefinitely and get worse.
But I realized this wasn’t just his considered professional opinion when I mentioned offhand that I was soon going to get surgery to insert a separate J-tube to replace the GJ-tube and get rid of the ulcer.
“I don’t see the point in that. Even if you make one ulcer go away, getting a new tube in a new spot will just rub somewhere else and create a new ulcer.”
That’s when I realized a pattern.
And the pattern wasn’t that he actually would have said this under ordinary circumstances.
The pattern was he had already written me and my situation off as not just unfixable, but there being no point to fixing it. Then he wrote off any problems as inevitable and likely to recur.
Imagine if you took your child to the doctor for an ear infection, and were told, “We won’t treat that, he’ll get another anyway.” Yes, he probably will get another anyway. You still treat ear infections.
I’ve never gotten another abscess so far. It’s been years.
I’ve never gotten another ulcer so far. It’s been years.
But even if I did, those aren’t things you leave alone if you want to live.
And that’s the thing.
If you have a feeding tube, some people see you as half-dead already.
If you have a developmental disability, some people see you as half-dead already.
I knew a guy with a developmental disability who had to go to the emergency room for a bad infection. His communication system was limited to actions, facial expressions, and seven signs in sign language, he had spent most of his life in a state institution, he was brown, and he was a ward of the state. That makes him an unperson to most medical professionals. They told his staff, “He won’t live out the night,” without even examining him. Then they tried to walk out without ordering treatment. She had to scream at them to get him basic, simple medical treatment that would’ve been given to anyone else. He got it, he got over the infection quickly. This was at least 15 years ago and last I heard he’s still alive.
I’ve gotten it more times than I can count.
A relative has a lot of health conditions (many of which run in the family), and at one point was told there was no point in treating them because she was in her late sixties at the time. This meant to the doctors that she was likely to die soon anyway so what was the point? She had to argue that her female relatives often live into their nineties in order to get any medical care at all at times. That is not something she should’ve had to say. Her medical decisions matter no matter what the average lifespan is. She was facing a combination of age discrimination and ableism (some of her conditions are rare and complicated and they didn’t want to put in the effort of learning, and I’m sure there were assumptions about quality of life and better off dead anyway in there).
This means that in actual situations where I’m trying to do a risk-benefit analysis, it’s very hard for me to trust that the information I’m getting from doctors is accurate. Because there are situations where it really is not worth intervening to deal with something that’s gonna come back anyway. Where the treatment is more damaging than the condition. I have a few of those (including one where the condition is harmless but unslghtly and the treatment is painful and risky, for example). But when doctors act like that’s the default situation, it’s extremely hard to know if they’re telling you the truth or not.
And in the wrong situation it can kill you. Or lead to lots of work and unpleasantness and illness that could be totally avoided.
Feeding tubes are definitely one area where this happens a lot. Many doctors don’t really know a lot about feeding tubes, assume complications are the norm, and assume that anyone with a feeding tube has no quality of life worth preserving by keeping us alive anyway. That combination means they’ll assume any problems are automatic and inevitable consequences of having a feeding tube at all. That any complications shouldn’t be fixed. Either because they’ll come back right away or because they can’t be fixed at all. And that there’d be no point in fixing anything because why prolong or improve the life of someone suffering as badly as someone with a feeding tube anyway?
These are all potentially fatal assumptions. Fatal fatalism, I guess. If you have any kind of unusual medical equipment or conditions. Or if you are in any way not valued by the medical profession. Especially if you’re not valued in a way that makes them think of you as dead, half-dead, terminally ill, socially dead, better off dead, or just waiting to die. Then watch out for this like a hawk. Always think of the ear infection analogy. If you weren’t better off dead to them, would they treat this? Do they repeat this advice no matter what your actual problem is? This is not valid medical advice, this is prejudice dressed up as medical advice. And it’s an excuse not to treat you. And it could kill you. So be careful.
The thing is, on a street corner, at least someone would see what was happening to me.
(TL;DR summary at end of post in bold.)
People have this idea of hospitals. You go to the hospital and you are safe. You are looked after. Someone is taking care of you. Someone is watching to make sure you’re OK. And if you’re not OK, someone will at least try to do something.
And that’s how it sometimes goes. That’s how it has sometimes gone for me. I am not going to say I have never had a good hospital experience. I am not going to say that there are not wonderful people going way above and beyond the call of duty, working in these hospitals. Often people working thankless jobs for long hours with little pay. And still dedicating a lot of their time to try and do their best by their patients. So don’t get me wrong, I am not saying that the image of what a hospital can be at its best never happens. But there’s a dark side and I have to talk about that.
See, sometimes there are patients who don’t matter. I have been a patient who doesn’t matter. And if you’re a patient who doesn’t matter, and you are in a ward where it is OK to abuse or neglect patient who don’t matter, and you are extremely sick, you will be lucky to get out alive.
I’m a patient who doesn’t matter for a lot of reasons.
I am on a feeding tube, which already means to many medical professionals that I am dead. I am maybe physically alive to them. But to many medical professionals, and I have heard this directly, once you have tubes or a trach or anything along those lines, people will see you as a corpse who happens to be still a little too lively. Or they see you as just a step away from death waiting to die. Either way, not worth putting the time and energy into treating like a regular patient.
I also have a developmental disability which means I am not entirely human.
Most of the time I can’t speak, and that only adds to my inhumanity.
I am in so many ways an unperson.
There are other things that factor in, to larger and smaller degrees. There is everything from the way I interact socially, to the fact my gender can look ambiguous, to being fat. Lots of things add together big and small.
But they all add up to one thing: I am an unperson.
In the eyes of a lot of people, I am not a human being. Iam somewhere midway between corpse and object and eyesore. Or even just a nuisance where my existence as a living being is an actual annoyance to some people. And they would just rather I stop annoying them.
I am not saying that all people see me that way. But it doesn’t take a lot. It just takes the wrong people in the wrong places. And I have been in the wrong place at the wrong time way too many times.
So that means I’ve had experiences like the following:
I have gone to the hospital for aspiration pneumonia. I am unable to eat and have been for a while. I try to tell them that and they ignore me. They tell me people get pneumonia without eating all the time.
I get very sick from the combination of antibiotics they’re giving me. I began vomiting uncontrollably.
I have a few things to make this extremely bad. One of which is a neuromuscular condition that makes you weaker the more you use a muscle. This is violent full body vomiting. And the more it happens the weaker I get. I also have adrenal insufficiency, which means any illness will be worse, will drain your cortisol, and low cortisol causes its own life-threatening set of problems. Including full-body muscle weakness.
I am on a cardiac ward,. This is called being overflow. Overflow means you’re a patient with one thing where you get put on a ward for another thing. Because they don’t have beds on a ward with whatever specialty you’re supposed to be undder.
So I’m overflow on his cardiac ward. And cardiac wards are generally pretty quiet places. The culture of this ward is they like it quiet. At all costs, it turns out.
So their response to my vomiting is to shut the door and get my roommate out of there and ignore my call light.
But I am hitting the call light because I am getting weaker. I am unable to clean myself. I am shitting the bed. I’m having trouble breathing and I am getting so weak I will soon be unable to move.
The first couple times, they’d answered my call light. But they stopped. And I thought the ward was just busy. Because one ward gets busy sometimes. You don’t get your goal and answered for a long time because there’s something else happening more important. And it was a cardiac ward, so I thought maybe someone having heart problems.
I know there was concern over what was happening to me. But it was not coming from the hospital workers. The nurses were ignoring me. The doctor said is his official position that he would not treat anything about pneumonia because pneumonia was all I’d come in for. I didn’t know any of this until someone told me later.
See, my friend was not able to visit me. But she sent over one of her caregivers. That caregiver had been through cancer. She’d been in that hospital and had known many people who’d been in that hospital and had seen the worst of that hospital. And she came in and apparently what she saw was terrifying.
Every nurse on the ward was aware my call light was going off. Everyone knew why. I was vomiting very loudly. It was audible from the hall. My door was shut. No other lights were going off. Nobody was busy. Everyone was ignoring my existence in a very pointed way.
So the caregiver apparently started throwing my door open. And the nurses would come and shut it without saying a word. And she’d throw my door open again. And the nurses would come and shut it again. And this back-and-forth went on until the only part I remember happendd. Which is the caregiver shouting at the top of her lungs, “If you kill her, I will have every lawyer in Burlington down on this place!”
I didn’t realize this was about me. I just remember hearing it. I was at that point dealing with the combined effects of the pneumonia, the weakness from not having had a square meal in weeks already, the antibiotics and their side effects, untreated congenital myasthenic syndrome, and untreated adrenal insufficiency.
So I could barely move. I remember thinking this out: I was alone and I knew I was alone. I needed to use whatever strength I had to get into a position where I was the most likely to survive. And that meant in that moment, climbing into a very odd position on the bed.
So the hospital bed was… like a hospital bed. The top of it was tilted upward. So I climbed onto that part. Just the top of the bed. And then I curled myself so that my legs were it one side of the bed, my torso was parallel to the top of the bed with my back facing the top of the bed, and my head was angled downward. So when I became unable to move, the vomit was most likely to pour out of my mouth not end up my lungs if I could help it.
This is not a position that anyone who is in a hospital within reach of help should ever have to be in. What I had to do, and the resources I had to muster, are far more typical of someone lost in the desert using the last of their strength to preserve their energy for rescue.
There’s a show called “I Shouldn’t Be Alive” where people talk about exactly these situations. The difference between the survival stories on that show and the survival stories I could tell, is not a difference in the physical and mental lengths you take to survive in situations where it shouldn’t quite be possible. The difference is their survival stories always have that happy ending that starts in the hospital. My survival stories always start in the hospital.
And while I am in the hospital I am enduring what these people endure in the desert, in the middle of the ocean, in remote wilderness places where there is no help. And yet this is the closest I can find my experiences anywhere on TV or anywhere else. That should say a whole lot about how people like me experience hospitals.
So they did as far as I know pretty much leave me to die or survive on my own steam. Doctors have said many times I should not have survived this. Doctors have said many times that I needed to be in the ICU. I’ve been told a lot of things. But I did survive it.
But it was a grueling, traumatic, dangerous, and totally unnecessary experience. That particular hospital stay is one of the worst experiences I’ve ever had with medical care.
It was not just being left for dead. It was this long, long period where I was alone in a way I have rarely been alone. The only time I saw another human being is when they came in to change my IV bags. And I was adrift and did not know what was happening. I didn’t even know if I was dead or alive.
I was very severely delirious. I was in more pain than I can ever remember being in. I was having a kind of seizure that meant that even in the absence of all these other thing it made time crawl, time just stretched out into eternity. So I pretty much felt like I had discovered the ninth circle of hell from Dante’s Inferno or something and it was located on that particular floor of that particular hospital. When I even knew I was in the hospital.
After that experience with the curling up on the bed that was really the last lucid moment I remember. I remember wondering it one point whether when I died I was going to be aware I was dying. Because I knew that was happening. I know when Death is hanging around my hospital bed. It’s something you learn to notice if you encounter enough. And Death was really my only companion for a lot of this experience.
So I got weirdly friendly with Death. But other than that it was like I was living in some kind of nightmare that never ended. The first thing I remember after curling up like that is the light being different, day being different I guess, and not even connecting with who I was, where I was. I thought there little dapples of sunlight all over the room. I thought I was the dapples of sunlight. I thought that’s what I was, I didn’t know I was physically there. And I was all in pieces all scattered all over the room.
Pink insects ate my eyelashes. The clouds took on the form of ancient mythological creatures. These empty empty people showed up — gray black and white images of people that would appear in front of me and carry emptiness with them. They vanished and carried even more emptiness when they did. There was a grid that went through the entire hospital of all the people who died there and were stuck on the grid. They invited me to join them. I didn’t know sometimes if I’d already died and joined them. A garden trellis appeared on the back wall one of the rooms. Vines would go down in and out of it and back to it and down in and out of it and back to it all night long, covering me and uncovering me, endless time, endless pain. All these things, disjointed, not coherent.
These things don’t sound like a lot. But they came with the most excruciating pain and the sense of time passing as slowly as possible. If you can imagine when you have really bad insomnia and you can’t sleep but you can’t really concentrate on anything either, so you’re just lying there with time seeming to go by like every second is a month. Like that only more. And I was in that hospital for five weeks.
And not all of my experience that hospitalization was as bad as the start. In fact some of the neglect and abuse stopped due to other people advocating for me. But there was a long period of extreme neglect. And it was brutal.
And when I was able to think enough to make these thoughts, I was very aware of some things.
My life was in danger.
Nobody there cared that my life was in danger.
Because I was in the hospital people thought I was safe.
Nobody would know I was just in a room by myself without even a monitor.
Like usually they at least least have a pulse ox on you or something. They didn’t even have that.
And I was unable to do much for myself. Being punished for that. At one point they actually said that because I had a developmental disability, if I got used to shitting the bed I’d never want to use a toilet again. I can’t fathom what world exists where shitting the bed is preferable to a toilet. But that’s what they thought of me.
And I was being left alone for every single hour out of the day that did not involve changing an IV bag. And the people came to change the IV bags did not interact with me. Nor did they do anything check on my status.
So this was a terrible experience. But it was also an experience where I knew I was alone and I was in danger I rarely had means of getting word to anyone.
And I was in a place where people think you’re safe. So nobody would think that nobody was looking after me. Nobody would think that nobody cared that I hadn’t eaten. Nobody would think that nobody care that I got so weak I could barely breathe sometimes. Nobody would think this was happening or even that was possible for this to be happening. And there’s so much more to this story than I can even tell in one blog post. It’s actually much worse than I’ve described.
Which is exactly why I’ve said that there are times when I think I would be safer dying on the street corner then I would be safe in the hospital.
And I think that is true for many disabled people and many other people who are part of groups that are not considered fully human.
But people want so badly to believe that hospitals are a place of love and caring and safety. People don’t want to hear this is a reality for the unperson patients, the unwanted patients, the annoying patients, the difficult patients, anyone who gets labeled such. Which is often disabled people.
And yet if I talk to people who had to be in the hospital, especially people don’t matter to a lot of people with power, I hear stories like this one and worse all the time. And disabled people of all kinds have tons of stories like this and worse.
This happens. This happens all the time. It’s not just a matter of funding or something. It’s a matter of certain people’s lives are not valued and certain places have cultures where that is okay. There are cultures in some medical establishments where doctors and nurses abuse or neglect people they consider not really alive, not really people, or too annoying. Sometimes this is as simple as choosing a blunter (more painful) needle to inject someone with. Sometimes it’s as huge as leaving people to die or even doing things to hasten death.
This kind of shit happens all the time. Listen to the stories told by those of us who’ve actually survived such ordeals. Every single one of us is a real person. Every single story we tell is important. Even if it flies in the face of everything you want to believe about the safety of hospitals and the benevolence of the helping professions. What you want to believe doesn’t change that people are being made to needlessly suffer and die for not being the right kind of person.
TL;DR: Some people — often disabled people, poor people, people of color, and other people who can easily become people who don’t matter — experience severe medical discrimination in hospitals. To the point that we may be simply left to die, or given the minimum possible medical care. We may experience severe abuse and neglect in what is meant to be a place of safety. Some of us survive it. Some of us die. Some of us feel that we’d at times be safer dying on a street corner than dying in a hospital. Because in a hospital, we’re hidden in a room where nobody can see what’s happening to us except the people neglecting us. At least if we died on a street corner, someone might see what happened. Maybe.
I need a couple of feeding tubes, and sometimes a chest port, to stay alive. One of the feeding tubes drains fluid out of my partially paralyzed stomach so it doesn’t overflow into my lungs. The other feeding tube goes straight into my small intestine, and you put all the food, water, and medication in there. That bypasses my stomach, which doesn’t empty properly so most things just sit there or backflow into my lungs instead of being used. People can need feeding tubes for lots of reasons, but in my case it’s to get around the fact that my stomach resembles a dead-end street. Luckily you don’t really need your stomach for digestion. Small intestines do it just fine.
There’s a lot of things people don’t understand about feeding tubes, but one of the objections I hear most often is that living with a feeding tube is ‘unnatural’. It’s modern medicine run amok, going too far, keeping people alive who’d be better off dead, and lots of other cheery bullshit. And the very idea creeps people out because it’s supposedly artificial, unnatural, and disturbing to even think about. It’s hard to know where to begin with that kind of thing, but I have a lot of objections to the idea it’s unnatural.
First off, human beings using technology to keep each other alive is the most natural thing we could possibly do. We are built to have compassion for each other, to take care of each other. We are built to solve problems, both alone and as groups. We pass on our knowledge and build on it from generation to generation. We are skilled at making and improving on technology. These are our natural skills, our natural instincts, and there is little more natural for a human being than using them.
Feeding tubes also aren’t that recent an invention. They date back at least to ancient Egypt, where they were tubes stuck up people’s butts to try to get food into them that way. Butt feeding tubes were the norm until people started figuring out how to use a tube down the throat to bypass the windpipe on the way to the stomach. They used those for everything from torturing and force-feeding prisoners to making picky children eat food they didn’t want. Butt tubes were still around though. When President Garfield was shot, they were able to keep him alive for awhile using a butt-based feeding tube.
It wasn’t until anesthesia made surgery possible and antibiotics reduced the infection risk, though, that people really made headway with the kind of feeding tubes I have. These are implanted through a hole (stoma) directly into the stomach or intestine. When done properly, these days, this is reasonably low-risk and reversible. The hole heals if you take the tube out. Even while the tube is in, it’s perfectly possible to eat by mouth if you’re capable of it. Nothing about the tube itself will prevent you from doing that, only whatever condition is making feeding difficult in the first place. So if you have the feeding tube and don’t need it anymore, you can get used to eating again before having it removed.
It may be obvious that I have a problem with the way people divide things into artificial and natural. Lots of animals use tools and technology. Lots of animals do things to solve problems. We’re not different there. The things we make are just as natural as the things beavers make. Whether we, or beavers, cause problems with the things we make, is a completely different question. But just the act of making things isn’t defying nature. It can’t be. That’s not possible. And it’s perfectly in line with every natural human instinct out there.
But for people who find what human beings do hopelessly unnatural… here’s this other thing that happens:
In case you don’t know what you’re looking at, that’s a couple of Douglas fir trees. One of them is a regular tree, the other is a stump. The stump is alive. Even though it has no leaves to make food out of, the stump is still completely alive.
How is this possible? The roots of the two trees are connected. The tree sends nutrients to the stump, so that it doesn’t have to make its own food. This can keep the stump alive indefinitely. This happens all the time. It’s tube feeding for trees.
Douglas firs, like the redwoods depicted in the wall hanging in my first photo, are a social species of tree. Many social species of tree connect at the roots, either directly root to root, or through a network of roots and fungus. They can send signals, nutrients, and other chemicals through the roots. They even show preference for family and for trees that — however trees decide this — are friends. Just because they’re a social species of plant and work very differently from us, doesn’t mean they don’t share with humans the desire to help each other survive.
I mean, I’m talking in terms that sound very human, but there’s no real words out there for saying what trees want and how. All life wants to be alive, though. For social species, that often involves helping each other out. That goes no matter what kind of life form you are and how different you are.
I’ve never met even the most ridiculous nature purist who’d claim trees are unnatural. And if it’s not unnatural for trees to use their time and resources to feed each other when they can’t make their own food, it’s not unnatural for humans to find ways to do the same. Including feeding tubes.
So don’t call my feeding tube unnatural. It’s as natural as the redwood forest in the crocheted wall hanging next to me in the first picture. And using technology to help each other survive is one of the most natural things human beings can possibly do. All these tubes and machines don’t have to horrify you. I’m a living stump, not the living dead.
The first half is well-researched information on tubefeeding in general. The second half reads like a cross between a sales pitch for blenderized diets and regurgitated Michael Pollan stuff. I use Osmolite for my main nutrition and supplement it with blenderized vegetables to get things you won’t find in elemental formulas. But when you’re reading along and the book starts referring to food the author thinks is bad for you as “edible food-like substances” and all the recipes specify the vegetables need to be organic, seriously? I don’t want orthorexia when I already can’t eat, thanks. It does tell you how to properly blenderize food for a feeding tube, though. It focuses on G-tube feeding and doesn’t mention the steps you have to do (like using a chinois) to make sure blenderized food can’t clog a longer and narrower J-tube, though.
If you’re interested in the social lives of trees, the following TED talk may be of interest:
What A Plant Knows: A Field Guide to the Sensesby Daniel Chamovitz. This one describes the sensory experiences of plants in a way that is pretty easy for a layperson to understand and dispels many popular myths about plant senses. The things described are in line with the scientific knowledge at the time the book was written in 2012, most of which is likely to surprise people. There is a lot of bullshit out there about plant senses, this is the real thing as far as we know right now.
Do not confuse these books with The Secret Life of Plants, which is largely garbage. Be careful of information that comes from that particular book, it’s made its way into popular understanding but most of it is nonsense or misleading at best.