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.
When I first tentatively described myself as nongendeered, I did not dream there would be so many words for this in the future that I wouldn’t quite know what to do with them all. So these word preferences are entirely personal, and should not be taken as telling anyone else to feel about different words or what to call yourselves.
This is mostly one of those posts that’s a little boring to me: It’s more posted for reference purposes for later posts, than for any other reason.
So here are some of the words for genderlessness and related concepts, and how I feel about them.
Words Specific To Genderlessness
This is the word I came up with for myself, when I first came up with a word. At the time, I viewed cisgenderedas meaning that you had a gender identity that matched your biological sex, and transgenderedas meaning that you had a gender identity that did not match your biological sex. So I came up with nongenderedby contrast: It meant that you simply didn’t havea gender identity. And therefore it couldn’t possibly match or not match your biological sex, because it just flat-out wasn’t there.
You can say all you want about my understanding of gender at the time, but that’s where it stood, and that’s my first clumsy beginnings at articulating what I was really experiencing. So it holds some kind of place in my heart regardless of everything I don’t like about it.
But I don’t like it at this point. Among other things, it’s clunky. It just isn’t easy to say or to read. It doesn’t work for me when I have better options.
But I do like that it’s never really caught on. When words for genderlessness catch on, they have a habit of acquiring gendered qualities. I don’t know why. Maybe because they acquire second meanings that basically refer to various nonbinary or androgynous genders (sometimes specific ones, sometimes just in general). This one, at least, never has never done that.
I really don’t like this one.
It seems to be a complicated subculture, at once a gender of its own and no gender at all, sometimes nonbinary and gendered, sometimes genderless, sometimes both, sometimes neither. And that’s fine for anyone who feels comfortable under that umbrella, but to me it just sounds like a social and linguistic nightmare.
Also, it’s hard to say. I don’t know if it was originally French and later used by English speakers, or whether it was always just borrowed from French into English. But it’s a very specific kind of French word that is hard for even someone familiar with French to figure out how to say in an English-speaking context.
So basically, I know exactly how to say neutrois in French. That’s not hard, there’s only really one way it can be pronounced.
But when a word using those particular French sounds is borrowed into English, it isn’t always pronounced the same way it would be in French. The French R sound doesn’t exist in English. So usually a word like this would be approximated by a W sound instead. So in English, it would sound like: noo-TWAH. Which sounds, to an English speaker, very close to how it’d be pronounced in French.
Except that it isn’t actually the same, so it’s confusing.
I don’t like the word itself any more than I like the word nongendered. I find it clunky and off-putting. I see that it’s supposed to mirror asexual, and it does a good job in that regard. I just don’t, personally, like it.
I’ve also gotten to watch the term evolve over time. And there was a time when it meant roughly what I mean by genderless, and it still does mean that for a lot of people.
But it’s acquired a second meaning that feels like it is a gender in and of itself, even with some unspoken rules about what falls into it. And there’s a specific kind of androgyny often associated with it. And that kind of androgyny never fits any kind of aesthetic I could pull off even if I wanted to.
And the second meaning makes it harder for me to use it. I don’t mind that terms evolve, I just don’t feel comfortable within what this term has evolved into.
Unfortunately for my personal preferences, agender has become the most popular term for genderlessness. If people know a term for genderless at all, it’s agender. Sometimes neutrois.
Obviously this is what I actually call myself. I like that it’s a word that can be readily understood and doesn’t look or feel clunky to say. I like that it just means lack of gender, and has no spoken or unspoken secondary meaning of androgynous, or a specific nonbinary gender with genderless qualities, or something like that.
This is a word that in some cases can technically apply to genderlessness, if by nonbinary you mean any gender or lack of genderother than male or female.
But I don’t actually like using it on myself. Because nonbinary is a term developed by people with genders, for people with genders, so it doesn’t feel like it fits. And I am not always comfortable being described this way, although people can use whatever definitions of words they feel ike.
This is much worse than nonbinary. Because it really is a gendered term created by and for people with nonbinary genders. It’s just not my territory gender-wise. And more so than nonbinary, it implies gender, at least to me. Since I lack a gender, it’s just not a comfortable fit.
I definitely feel I have a place in the trans community. Because I believe as long as you’re subject to transphobia, it doesn’t matter what specific category of gender you fall into, you may need the community for survival. And the community has no right to reject anyone who might need it. If parents who throw their trans children into the streets could ever be stopped by “But I’m nonbinary and not going to transition” then I’d take the hair splitting seriously. But as it is, given that membership in the community can mean survival to some people, I find splitting hairs about who belongs there to be a form of extreme and selfish cruelty.
That said, I’m not always comfortable under the transgender umbrella. It comes down to this: All the culture, concepts, words, ideas, etc. in the trans community were created by and for trans people who had genders. So these things all can work wonderfully if you’re in that category, which is most trans people. But I lack any gender identity at all and that means that even when things almost fit they don’t quite. Like a shirt that fits fine in some places but you can’t wear it because the armholes are so tiny you can’t squeeze the thickest part of your arm through no matter how hard you try. Except that the “fits fine in some places” part is added to by there being places where it looks like it fits fine the same as on everyone else, but it actually doesn’t fit well at all and may even restrict breathing somewhat, but without anyone being able to see any difference.
So I think genderless people belong having access to the trans community, especially if we want to and are comfortable there. But I can see why a lot of genderless people would be uncomfortable or not feel like it was the best fit. It wasn’t made with us in mind, and in some ways was made with experiences in mind that we’re never going to have. But anyone else saying we don’t belong there has no real standing to do so. That’s our own call and our own call only, and it can change based on context very easily.
This is a series of graphics promoting the Disability Integration Act, an important piece of legislation in the United States right now, that is not getting anywhere near enough support. From the Disability Integration Act website:
The Disability Integration Act (DIA) is civil rights legislation, introduced by Senator Schumer in the Senate and Representative Sensenbrenner in the House, to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. The legislation (S.910, H.R.2472) builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services (HCBS) as an alternative to institutionalization. It is the next step in our national advocacy after securing the Community First Choice (CFC) option.
Credit for most of these goes to Cal Montgomery. His dogs Murdo and Erastus are featured too. Image descriptions are in the alt and description tags, the captions contain my personal responses to each graphic.
What I like about these is they show how simple and normal it is, what disabled people want. And they have adorable animals on them, and draw parallels with the actual lives of the animals, and people care about animals. They might see things about disabled people they wouldn’t otherwise see without the analogies being made. For real.
But seriously my favorite is the one about being able to poop whenever I want. That one really encapsulates why it’s important that I stay in my own home, and why making me move to someone else’s home is unreasonable, cruel, criminal, and a whole host of other choice words.
And yet disabled people and elderly people are expected to not only accept restrictions on our freedom, but to do so gracefully and without complaint. In fact, the more readily we accept these things, the more we are praised. And then we lose our freedom.
And usually we die faster too. Not that anyone notices. They think we die because we’re elderly or disabled. Actually, lifespans (along with various other measures of physical and mental ability) for various disabilities have had to actually be updated over the years entirely because of fewer of us living in institutions. Institutions kill people faster. All institutions, whether large state institutions or small nursing homes. They reduce our lifespan and nobody notices or cares. That’s not the only reason they’re bad, but it gives the lie to the idea that they’re really there to “protect our safety”.
There is nothing that happens that is good in an institution that can’t be done, and done better, outside of one.
There is a lot that happens in institutions that is bad and doesn’t need to happen at all.
There is nothing that happens in institutions that is special to institutions, good, and requires an institution in order for it to happen. Anything you hear different is a lie used to keep institutions open.
Institutions are our modern equivalent of Victorian workhouses.
Workhouses were institutions for poor people. Think the sort of thing Charles Dickens wrote about. They had terrible living conditions and people died in them. Many poor people would rather die than go to the workhouse, just as many disabled people would rather die, live on the streets, or go to jail than end up in an institution. People considered workhouses necessary. People considered workhouses natural. They were neither one. These days, people consider workhouses an atrocity and a thing of the past.
But we still have institutions for disabled people, and they are everywhere. Some of them are large and obvious, others are hidden in plain sight. But all contain the same thing: A power structure that puts administrators on top, direct support staff in the middle, and disabled people at the bottom. If you want to know how institutional something is, follow self-advocacy leader Roland Johnson’s advice and ask the question “Who’s in charge?”
Also, anything that requires a disabled person to move out of our own home — even if it’s “just” moving into the home of an existing staff person — and gives no option for the disabled person to get the same help in the home we already live in, shows that something is institutional in nature. Even if it’s entirely “community-based” otherwise. Real community-based services let you live wherever you want to live.
And there are institutional-style services that masquerade as community-based services and get funding through home and community-based services (HCBS) waivers. Even some that let you stay in your own home. If living in a system seems more like a dystopia than it ought to, chances are thre are at least institutional elements. It’s plenty possible to have an institution where each person lives in their own home but it’s otherwise run like any other institution.
Nearly every night, I walk around my apartment in the dark. It’s easier to find my footing without the distraction of eyesight. I can feel my legs, my feet, the floor, the ground, the things that lie beneath. I touch the walls to better feel the building itself. Like all buildings, it has a personality. I find and touch the oldest parts of the building, wooden pillars in seemingly random places. They stretch from the bottom of the ground floor to the ceiling of the second floor.
I explore my whole apartment in the dark, all the time. These days, sometimes I cry. People don’t understand what this place means to me. It’s more than any random home, which would mean a good deal already. I have so much more to lose than I used to know was possible.
The dark allows an intimacy with the house that would be impossible in other circumstances. I can feel the way it wants to be all the things the best houses are. It wants to be a home, a real home. It wants people to live in it. It wants those people to be happy. It wants to protect them and make sure they’re safe. It wants them to be comfortable. It wants to be a haven, a place of refuge, a place of joy. And it genuinely loves the people who live in it.
I’ve never lived in a house that was a home. Let alone one that wanted to be a home with every fiber of its being. I grew up in a house that wanted to start fights, to make violence worse, to scare and hurt and trap and imprison. It was such an unpleasant place that even from a young age I’d put myself through things I hated, like sleepovers, as long as they’d let me avoid the house. I never understood homesickness, only its opposite: dread that I’d be trapped there forever. I still have nightmares not about people or events but about being trapped alone in that house, unable to get away from it for the rest of my life. So I’m well aware that not all houses have the personality to be a true home, and how lucky I am to have found one.
I don’t normally watch horror, even cheesy horror. But I did watch every episode of Buffy. And only one truly got under my skin. It had a monster that lived in a hospital. You could only see it if you were crazy, delirious, or neurologically impaired. It sat on the ceiling above your bed and terrorized you while everyone else thought you were just hallucinating. Then it ate you.
Of all the things they showed on Buffy, that’s why I usually sleep with all the lights on. Embarrassing but true. When the lights go off, my brain starts imagining that damned ceiling monster.
The dark has always been a refuge from the pain, nausea, and chaos I associate with vision. It’s a place of calm and belonging. A place where things make sense and move slowly enough to understand. Where I can pick up all the shards of a world that comes through so fast it shatters inside my head. And just stare at the stained glass colors if that’s what happens. Or slowly put each piece back together in something like its original shape, so that something I saw earlier finally makes sense. The darkness itself feels alive, a warm and friendly presence: “Here in the shadows where everything blends, the darkness and me are the closest of friends.”
This house makes it so I can be in the dark again, comfortably, and not be afraid of the ceiling monster. The house protects me and makes me aware I am protected, even from my own fears.
I’m not sure how often I’ve said this explicitly on this blog, but religion is central in my life and redwood forests are central to my religion. The connection I have with the particular forest I was born in, Redwood Terrace, is important to my ability to practice my religion. And while it’s true that this connection exists no matter where I go, it’s also true that it’s much easier to be immediately aware of that connection in some places than others. Like a lot of things in this realm, there’s no real way to explain it, things just work like that.
Anyway, I find it easy to feel connected with Redwood Terrace from my apartment. Something is different about the ground around this building compared to other places around here. The apartment itself seems to help me connect with Redwood Terrace, as well as it seeming to have developed a friendship and connection with my best friend’s house, which has a similar personality. All of these things mean I’m more able to practice my religion in this particular home than in any other home I’ve lived in. And that matters, even if I can’t explain to you how it works or why.
I’ve got so much more to lose than I ever imagined was possible. It’s no longer just a matter of having my own place. I have my own place that I love and that loves me back. That puts things on a whole different level. I have an entire relationship with this place. It would be bad enough if they were trying to make me leave my home, any home I’ve ever had before. After all, there is never a valid reason to make anyone leave their home on the basis of disability. But now it’s not just my freedom I could lose. It’s an entire relationship with a place that matters more to me than I can explain.
Nobody should ever have to explain or justify why they want to live in their own home. Nobody should ever be told that a perfectly normal desire to live at home is
in any way deviant, selfish, stubborn, denial, unrealistic, or unreasonable. And our society should no more accept this response to disability than we accept Victorian workhouses as a solution to poverty.
But even if I shouldn’t have to explain, I do want to explain what my home means to me. Having my own place already means a lot more to me than I can express. And I’m not really able to write about that at the same time as writing about my specific home. But having a specific home I’m very attached to, means I have so much more to lose.
You can’t just replace one home with another, any more than you can replace a human being with another. Even when you don’t mind moving, even when you choose to move, the new place is not the same as the old place. It should always be a choice.
It’s wrong for one person to have the power over another that it takes to tell them their disability means they have to leave their home. But it’s also wrong to use that power if you have it. And each person who uses this power over another human being, bears some of the responsibility for the damage done. And there’s always damage. Taken as a whole, the removal of disabled people from our homes is a large-scale crime against humanity.
Participating in such a thing isn’t trivial, no matter what your role. Maybe you make the policy. Maybe you enforce it. Maybe you grudgingly go along with playing it out, but you play it out on us nonetheless. Maybe you persuade us to give up ourhomes and move somewhere else. So many things you could be doing, but it means you bear some responsibility for somethin terrible. You can’t escape that. I can’t sugar-coat it for you.
This is my home.
That’s all there is to it.
This is my home. And anyone who participates in trying to take it away from me, is doing something terrible.
Because this is my home. Living here is my right. Having the assistance required to live here is my right. Nobody gets to chaange that. And anything that calls itself the Home and Community Based Services Waiver should never include services of a type that force or coerce anyone to move out of their own home. They’re not home and community based if they force you to choose to leave your home and community for somewhere else, no matter where that somewhere else is located. This is my home, you can’t just exchange it for another and pretend they’re the same.
Generations of self-advocates with developmental disabilities have fought for the right to live exactly where I am living now. Lois Curtis fought for this. Elaine Wilson fought for this. They were two women with developmental and psychiatric disabilities, and don’t forget it. They are what the Olmstead decision was all about. Everyone has fought for this and I will not give it up lightly. I will fight for it for me and for everyone who comes after me. And it doesn’t matter if you don’t understand what it means to grow up thinking you’ll never live in your own home, but I did grow up that way and it nearly killed me. I don’t want any child ever growing up again believing they’ll never have a chance at freedom and a home of their own if they have a disability. My apartment may not mean much to anyone else but it means the world to me and that’s the only thing that matters here.
This is my home. You don’t get to tell me that’s not important, or that giving it up is inevitable or necessary. I know better. I know my rights. THIS IS MY HOME. And this is how much I have to lose. And more. I will fight to stay here with everything I have in me, and never stop fighting no matter what happens. Because it’s not just my home at stake. As long as any disabled person can be told their disability is too severe to live at home, none of us are truly free, because true freedom isn’t conditional. THIS IS MY HOME.