I hate labels but this post is all about labels. Deal with it.
I do not just have one developmental disability. This is one reason that I identify more with the self-advocacy movement than any diagnosis-specific movement.
So the developmental disabilities that are official in California, where I come from, are: Cerebral palsy, autism, intelleectual disability, childhood-onset epilepsy, and fifth category (anyone who needs the same kind of care and does not mostly have a specific learning disability like dyslexia, or a purely physical disability (except CP).
I have childhood-onset temporal lobe complex-partial seizures. I also have had, less freqently, absence or petit-mal seizures (where you stare and then totally forget everything that happened), atonic seizures (where you drop to the floor very rapidly and usually injure yourself, it is a sudden loss of muscle tone, not a grand mal/tonic-clonic), and myoclonic seizures (where your arms fling out while conscious for no apparent reason). I may have had other types but that is what I can think of.
Childhood epilepsy has affected me more than any other DD I have, I think. It sounds weird unless you have grown up with it largely untreated or mistreated. It hits you with out of place emotions that you start off thinking are real. It makes everything weird and repeaty. It gives me deja vu and jamais vu. Randomly, but usually in clumps. And I have developed the so-called TLE (temporal lobe epilepsy) personality. The following is from Wikipedia:
Focal aware means that the level of consciousness is not altered during the seizure.In temporal lobe epilepsy, a focal seizure usually causes abnormal sensations only.
These may be:
Sensations such as déjà vu (a feeling of familiarity), jamais vu (a feeling of unfamiliarity)
Synesthesia (stimulation of one sense experienced in a second sense) may transpire.
Dysphoric or euphoric feelings, fear, anger, and other emotions may also occur. Often, the patient cannot describe the sensations.
Olfactory hallucinations often seem indescribable to patients beyond “pleasant” or “unpleasant”.
Focal aware seizures are often called “auras” when they serve as a warning sign of a subsequent seizure. Regardless, an aura is actually a seizure itself, and such a focal seizure may or may not progress to a focal impaired awareness seizure.People who experience only focal aware seizures may not recognize what they are, nor seek medical care
Focal impaired awareness seizures
Focal impaired awareness seizures are seizures which impair consciousness to some extent:they alter the person’s ability to interact normally with their environment. They usually begin with a focal aware seizure, then spread to a larger portion of the temporal lobe, resulting in impaired consciousness. They may include autonomic and psychic features present in focal aware seizures.
Altered ability to respond to others, unusual speech
Transient aphasia (losing ability to speak, read, or comprehend spoken word)
These seizures tend to have a warning or aura before they occur, and when they occur they generally tend to last only 1–2 minutes. It is not uncommon for an individual to be tired or confused for up to 15 minutes after a seizure has occurred, although postictal confusion can last for hours or even days. Though they may not seem harmful, due to the fact that the individual does not normally seize, they can be extremely harmful if the individual is left alone around dangerous objects. For example, if a person with complex partial seizures is driving alone, this can cause them to run into the ditch, or worse, cause an accident involving multiple people. With this type, some people do not even realize they are having a seizure and most of the time their memory from right before or after the seizure is wiped. First-aid is only required if there has been an injury or if this is the first time a person has had a seizure.
This is Mel again, just to note that focal impaired awareness seizures must be the new term for complex-partial seizures, which is what I grew up being told I had. Back to Wikipedia:
There is some period of recovery in which neurological function is altered after each of these seizure types. This is the postictal state. The degree and length of postictal impairment directly correlates with the severity of the seizure type. Focal aware seizures often last less than sixty seconds; focal with impaired awareness seizures may last up to two minutes; and generalized tonic clonic seizures may last up to three minutes. The postictal state in seizures other than focal aware may last much longer than the seizure itself.
Because a major function of the temporal lobe is short-term memory, a focal with impaired awareness seizure, and a focal to bilateral seizure can cause amnesia for the period of the seizure, meaning that the seizure may not be remembered.[c
Temporal lobe epilepsy is associated with memory disorders and loss of memory. Animal models and clinical studies show that memory loss correlates with temporal lobe neuronal loss in temporal lobe epilepsy. Verbal memory deficit correlates with pyramidal cell loss in TLE. This is more so on the left in verbal memory loss. Neuronal loss on the right is more prominent in non-verbal (visuospatial memory loss).
The effect of temporal lobe epilepsy on personality is a historical observation dating to the 1800s. Personality and behavioural change in temporal lobe epilepsy is seen as a chronic condition when it persists for more than three months.
Geschwind syndrome is a set of behavioural phenomena seen in some people with TLE. Documented by Norman Geschwind, signs include: hypergraphia (compulsion to write (or draw) excessively), hyperreligiosity (intense religious or philosophical experiences or interests), hyposexuality (reduced sexual interest or drive), circumstantiality (result of a non-linear thought pattern, talks at length about irrelevant and trivial details). The personality changes generally vary by hemisphere.
The existence of a “temporal lobe epileptic personality” and Geschwind syndrome has been disputed and research is inconclusive.
Okay it is Mel again. Most of the things listed apply to me in one way or another. In fact, the more you do your research, the more you would think (if you know me well) that they had me followed. It is far more a part of me than anything else.
One thing Wikipedia left out, is the development of an intellectual disability later in life, caused by the temporal lobe epilepsy. From the signs, I seem to have done that. I have been told by doctors I have the cognitive status of an infant. And I have been told similar things, including that I will never grow up, by a neuropsychologist who seemed to want to get my parents to put me under adult guardianship. And I know I fit the official criteria.
Hypergraphia is more than compulsive writing. It is compulsive creativity of any kind. I definitely have that.
I’m definitely autistic. But like these other labels, I don’t like being confined to it.
Also, I grew up hearing the words “underlying developmental disability” a lot. I didn’t understand them and they scared me. I wanted to know what it meant but at the time had very little means to ask. They also said that it was severe, complex, unsalvageable, and many other things to that effect.
So basically, CP is the only one I definitely don’t have. But there are other less-known ones like childhood-onset brain injury and fetal alcohol syndrome. Also given that CP is involved, there are people with physical and learning disabilities that would have qualified back in the day. I still feel like my agrin mutation leading to congenital myasthenic syndrome is a developmental disability in and of itself.
But I am part of the DD self-advocacy movement. One of the most important parts of that movement, for me, is the rejection of specific labels. This does not mean we don’t understand we are different from each other. It is just a core part of the values of the movement to put the person first and our disability second. That doesn’t mean disregarding disabilities or important individual differences. It just means we go about it in a different way.
My favorite part of the self-advocacy movement is we seem to have gotten cooperation among very different kinds of people with disabilities. For instance, I went to a live-in rec program. It was hell on earth, but the saving grace was the cooperation. I was being pushed in a wheelchair. People who could walk but unsteadily were allowed to grab my chair. Meanwhile, people who could talk would get the attention of staff. If someone fell, which happened often, people who could walk would go for help.
I have never seen that kind of cooperation among any other group of people with disabilities. Or, as a multiply-disabled (including several DDs) friend said, the DD world was doing cross-disability great, long before cross-disability was a term. We are an accident of history. There is no particular reason for us all being lumped together, other than that historically we were put in institutions for the “feebleminded”. Sometimes also the “insane and feebleminded” or just the “insane”, but mostly they focused on feebleminded.
This post is a lead-in to several other posts. I had to do it this way. Just like I need the words “genderless lesbian” without being a TERF, I need the words to explain my relationship to the different kinds of developmental disabilities.
So this is my attempt to say: I seem to have temporal lobe epilepsy (with other kinds of seizures), an intellectual disability, autism, and some kind of unnamed DD. I also have been called low-functioning. But I don’t live my life as if labels matter. I just need these words, right here and right now, to explain things. At least one further post is planned. I don’t know when.
Some of the words used in this post are really ugly. That’s because they’re the really ugly words that I heard. I’m not gonna sugarcoat this. But if you can’t deal with reading the r-word in either of its common forms, or hear “psychotic” or “blind” used as insults rather than descriptions, you might want to skip this.
The story here, the reason it’s on Storytelling Sunday, is because each of these quotes forms one little piece of a long story that’ll be familiar to way too many disabled people. And while I’d like the story to stand on its own, I’d just like to comment that I don’t think lesser of any group targeted by such speech. And I don’t even necessarily think lesser of the people creating this speech — it’s very destructive, but it happened a long time ago to a bunch of people I’m leaving anonymous on purpose because who knows how they’ve changed since then or why each one said what they said.
These things were said in all manner of tones. Some people seemed to be trying to be affectionate. Others were aiming to insult and harm and bully. Others were just confused or curious. But all of this has an effect on you when you hear it day in, day out, every day, in one form or another. Especially when it’s coming from loved ones and people who are supposed to be loved ones.
I’ve asked about the blind part. Apparently it’s about a bunch of things: I stand too stiffly. I don’t make the normal eye movements and look straight ahead too much. (This is just called “staring” and apparently makes me stand out.) I don’t respond normally to visual information. (I am low-vision, guys…) I wear dark glasses in low light. I don’t always move my head or eyeballs in ways that would indicate noticing things visually. I could go on. Apparently I have many things that make me “look blind”.
But hearing these things so much made me think there was something wrong or shameful about being low-vision.
And, well, as I said, the story told by the above quotes most likely speaks for itself when any disabled person who’s heard similar reads it. I just want to make sure people know, my problem here is not “OMG I’m being compared to people I think are inferior,” it’s “OMG I’m being compared to people the speaker thinks is inferior, and being thought inferior myself, but I wouldn’t be inferior whether or not these things were accurate descriptions.
Right now I’m talking about blindness, but blindness is just one of the things that was repeatedly called to my attention as a sign I was Doing Something Wrong, or rather Being Something Wrong (you know you’re being accused of Being Something Wrong when the local kids use your full name as a cuss word growing up). Which — no — doesn’t make the slightest bit of sense, but ableism rarely does.
But it does get inside of you, telling you these things do make you inferior (whether they exist or not barely matters). And I’ve been ridiculously afraid of being low-vision for way too long. Time to change what’s inside my head, time not to let this crap into my brain anymore. You don’t haveto accept every idea handed to you, something that was news to me when I learned it rather late.
They cared enough to choose an extremely meaningful picture for me on the birthday card. They didn’t have to do that.
The bithday card was not this year, my 39th birthday.
With the dates written, it would have to be my 37th or 38th. If I’m doing the math right.
Things were already hitting the fan in a huge way at that point. I was being hurt by some of the same people who signed the card.
But back then, there were still enough people who cared about me as a human being and treating me like as a human being (or in some cases, at least, appearing to) that things were just… different.
Reading it was like reading a postcard from a universe I barely remember.
A universe that was already disappearing by the time the card came.
But there was a time, if I was hospitalized, Howard would take extra time to visit me in the hospital and help me get better and go home, and help me with the transition home, and give extra help to keep me out of the hospital, and extra help to make up for the fact that you never go home healthy and often need some extra support.
There was a time when they didn’t treat my second mom like she’s made of poison. To the point they won’t allow my caregivers in the same house as her for longer than 5 minutes, and have gone to great lengths to lie in order to avoid having to deal with her, because she complained about their medical neglect and they never forgave her.
But there was a time.
There was a time when some people tried to help me. Even case managers.
There was a time when things mostly worked.
There was a time when people’s efforts to help me were not thwarted by the office people at every turn.
There was a time when many people in the office were actually helping me.
The system was never good.
But it was never like this.
This card was signed by seven people.
They didn’t have to get me a card.
They were being nice. They were treating me like a human. Some of the time.
Explaining my communication style is a waste of time.
Attempting to correct communication misunderstandings is a waste of time.
The only good use of my time is what my social worker says it is.
She gets to define what topics are worthy of conversation and what topics are not.
I don’t get to define anything.
She gets to define how much time we spend together planning my discharge.
She is talking about my options at discharge.
I am not allowed to return to my own home if I want services. Howard has declared it unsafe for staff. It was not unsafe for staff the entire time they were giving me services there up until now, including times when I have been in the hospital. It is suddenly unsafe for staff so they can force me to use a cleaning service they have decided I need to use and have been trying to get me to use for months now. (I did use that cleaning service to clean out an area that was genuinely unsafe. When evaluated, only that area was considered unsafe, not my entire apartment. Howard has seized on the idea of declaring my apartment unsafe for other reasons. Also the part of my apartment that was unsafe was only unsafe because of the state someone else left it in, it was never something I was considered to be responsible for.)
I had by the way been told it was an access issue (not being able to get around with my walker) until it suddenly and unexpectedly became a “safety” issue. I guess safety issues are a bigger deal. They didn’t care about my safety when they were fucking with and probably causing my stress fractures so I have no reason to assume they care now.
So I set up a situation where I would be living with someone else while I recover from my injuries and illness. We’d been expecting to have to do that anyway because I’m in terrible shape and the hospital wants me out anyway. I’m leaving Tuesday.
Anyway, I’ve lived in this person’s house before, with a bed larger than my bed is now. They now claim that my bed will make her house unsafe for staff. They also claim there is no seating in her house for staff. None of this is true.
At any rate, not only do my social workers get to control conversations, but they apparently get to control things about the placement of my bed. And Howard gets to decide whether my bed is safe. Howard helped me buy and transport this bed in the past and were only too happy to help. Now I am being told I will get the minimal help possible and then only if I toe the line in all these weird ways that have nothing to do with safety.
(The seating thing is an ongoing thing they bring up at the house I am staying at. They don’t like the house’s inhabitant. That’s what’s really happening. They have never given me crap about seating at my house which is far worse than the house I’ll be staying at. Also whenever offered seating they refuse it. Including at the house I’ll be staying at. There is more than adequate seating but they refuse to use it and then claim there’s no seating because they refuse to sit down.)
So there’s another agency I get services from. I am told they also have a problem with serving me at the house I’ll be staying at. They have always served me there before. I am told, again, the problem is the bed, and that if Howard doesn’t approve the bed, this other agency will not either. We have contacted the other agency, which has assured us that this is not the case whatsoever, they are fine serving me as far as they know, and if they weren’t okay with my bed, they’d just use the other bed in the house, which houses another of their clients who receives services from them with no problem whether my bed is there or not.
At any rate, it seems like people are playing games with me again.
And it seems like I am yet again being penalized for having developmental disabilities.
Because guess what?
When you sign on to work with people with developmental disabilities?
You’re signing on to work with people who take more time to process information, who talk around topics instead of being able to come up with the words for the main topic straight away (and in doing so take a lot more time to talk than usual), who have trouble with emergency speech if we have speech at all, who have trouble with language, who have trouble using the typical set of social skills, who have trouble with timing, etc.
And you know what the solution is not?
The solution is not to treat the person like their attempts to explain themselves or the barriers to access they face are wastes of time, like the only possible good thing they could be doing with their time is not wasting one second of yours. Where you, of course, get to define what’s a waste of time and what isn’t, what’s important and what isn’t, etc.
Because it’s disgusting to treat another human being this way.
I’m another human being. I’m not that different from you, no matter who you are. I have faults and I have good points. And I don’t deserve to be treated like this.
And yes, I know you think I treat you badly. I don’t. There’s a difference between being unable to do certain social skills the typical way and not giving a fuck and the difference matters. Especially when you’re paid money to at least act like you give a fuck whether you do or not.
Howard social workers have to serve clients who try to hit them.
I don’t try to hit my social workers, at Howard or elsewhere.
If they’re obligated to come and meet with and be respectful towards people who hit them, they’re obligated to do the same for me.
No matter how much my communication and language offend them.
By the way the more emergency speech I have, the worse my communication skills are and the more likely I’ll do things people find offensive. Same with the more people are in the room, the more stress they put me under, the more their “communication” is not really communication at all but more an attempt to tell me what to do and control my actions, etc.
There’s people in the world who can’t even imagine why I’m treated this way. They have trouble believing that there are people who see me as rude and difficult.
It’s mostly because they don’t come into interactions with me with the goal of getting me to do what they want of me. And they don’t expect me to be something I’m not.
And you know, after nearly 40 years of total anguish that I can’t be what highly controlling people want me to be, I’ve had enough. I can’t be what they want me to be. I’ve tried. I can’t. If they can’t deal with me as I am, they just have to deal with it.
No, that doesn’t mean I’m not accountable for my actions or that I’ll never change. It just means that I won’t change at the whim of people who only want me to change to make me easier to control.
I’ve had enough of that for a lifetime.
Being in the hospital sometimes makes you think about what actually matters in life.
And pleasing social workers is one of those things that you don’t want to spend the rest of your life trying to do.
If you can help at all especially if you’re in the Burlington area, please see my recent post (no, I don’t know where it is, but it should be easy to find) because I might need a lot more help than I thought I would if I end up being cut loose by lots of people whose job it is to actually help me. There’s a post with contact info for Laura. Contacting me won’t do much good. My abilities are still haphazard and I’m writing when I can where I can and not always reading.
Oh also they basically still won’t help me with anything, even if I jump through all their hoops, unless I carry out physical elements of the tasks involved. So I’d still need to be physically participating. Or else hiring a cleaning service, because everyone on disability can afford to do that! Also if I don’t hire a cleaning service or do my own cleaning or whatever, they can withdraw services at any time if they decide my apartment isn’t clean enough. So now I’ll get penalized in one more way for having the disabilities that Howard exists to help people deal with, and that Howard has been helping with for most of the pas 13 years. Because I can neither do these things, nor afford to hire someone to do them. (They know I can’t afford it yet they keep bringing it up.)
And that’s just one piece of the tangle. It’s exhausting just to think about. Please don’t write me “easy” ways this could all happen. If you have actual ideas write to Laura. I’m exhausted and it’s gonna be hard enough recovering from this hospital stay without additional crap to deal with and think about, whether that’s agency BS or other things. And sometimes even the most well-intentioned advice is way too much to deal with.
Anyway this is pretty naked cognitive ableism. That’s what it is when you tell someone that access doesn’t matter, understanding the way their communication works doesn’t matter, and every topic that matters to them is a waste of your time. I have developmental disabilities. This isn’t going away. There seems to be a whole lot of that sort of wishful thinking going on around here — “This isn’t convenient, so maybe it’ll disappear if we make Mel feel shitty enough about it being attached to hir.” Also a lot of old=boys-network-style corruption with social service agencies around here. Like the time (maybe 7 years ago?) I and some other people stood up for my right to get a life-saving treatment I was more than qualified for, at the hospital, and my Howard case manager after it was over chastised me for “jeopardizing Howard’s good relations with the hospital”. Yes, she actually said that, and that was one of the better social workers I’ve had. And that factors into how all these agencies work together, too.
I watch a lot of standup. I watch good standup, bad standup, everything in between. I just watch standup whether I like it or not.
And I vastly, vastly prefer the comedy that allows for dick jokes and other things that aren’t considered ‘clean’.
Because it’s less likely to seriously offend me.
Because people with intellectual and developmental disabilities are acceptable targets of ‘clean’ comedy. So when they get rid of all the dick jokes and all the stuff that’s socially unacceptable and ‘dirty’, they’re left with acceptable targets.
Which includes me.
And no, hating r-word jokes is not the same as censorship or not being able to laugh at myself. I laugh at myself, and at disability, all the time, to the point it makes a lot of nondisabled people really uncomfortable.
The issue is that most r-word jokes are hate.
They’re not meant in good fun.
They say “You’re not a human being.”
It doesn’t matter if you cloak that message in humor, it’s never okay.
The primary targets of the r-word are people with intellectual disabilities. But it has a broader range than that — it’s aimed in general at a group of people who are harder to define. Anyone who can be easily mistaken for someone with an intellectual disability, certainly. And anyone who’s been, in the imaginations of most people, sort of lumped together as this blob of people who aren’t really human beings. That includes most people with developmental disabilities, some people with cognitive disabilities, and, as I said, it’s a group whose borders are fuzzy and indistinct. But we’re all lumped together under the r-word in the imaginations of the people who use it. It’s not a diagnosis, it’s a slur.
And I don’t use the word slur lightly.
To me, for a word to be a slur, it has to be a word that contains within it the notion that the people targeted by it are not really people or human at all.
It can’t just be an insult that’s often thrown at a particular group of people. It has to be more than that.
The r-word is probably the slur I have absolutely the least tolerance for.
People have been calling me the r-word since I was a child.
My voice sometimes has ‘that tone’ in it that people associate with the r-word. A sort of ‘dullness’. People imitating my voice have always taken advantage of that. And they imitate my posture and mannerisms as well.
By the way it’s very fucked up to have a common mannerism associated with people like you, be the actual American Sign Language word for the r-word.
But you don’t need to speak ASL to use our mannerisms and tone of voice against us.
And yes — people used the r-word on me even when I was technically classified as gifted. In fact, they told me “Gifted is just what they call [r-words] to convince them they’re doing well in school when they’re really going to special classes.” I’m not the only person I know with developmental disabilities who was told this growing up.
I was also told I looked like a [r-word] as a way to get me to behave more normally. It didn’t work. I never had any idea what they were talking about. (I also got called “blind” and “psychotic” in similar circumstances. There was always a tone of complete disgust, like I was a dog who’d just shat on the table at a fancy dinner party or something.)
At any rate, r-word jokes aren’t funny. At least, not the ones I’m talking about.
And the fact that they’re considered perfectly acceptable for ‘clean’ comedy to the point they seem more common there than in the ‘dirty jokes’ kind, says a lot too much about the society we live in.
R-word jokes are an expression of hate, not an expression of humor. It’s not just the word, it’s the way it’s used. It’s the acceptance that those of us targeted are not human beings. It’s the knowledge that every time someone accepts this kind of hate into their mind, people like me are at more risk of bullying, abuse, hate crimes. And that most people don’t even register it as hate. Even though it’s some of the most horrible and dangerous hate I’ve ever seen.
Sacha Baron-Cohen says, “I am exposing. I am airing prejudice.” The only problem is that the people [who] are laughing, are not laughing at the prejudice. They’re applauding the prejudice! When the joke is “Throw the Jews down the well, kill the Jews” it’s not funny. But even if it was funny, they’re applauding it.
Abraham Foxman, “The Last Laugh”
I agree with a lot of the people on “The Last Laugh”. It’s a documentary about where the line is between acceptable and unacceptable topics for humor. I don’t think there’s unacceptable topics for humor, but I do think there’s more and less acceptable ways to handle them. And a lot of it depends on who is saying the joke, how they are saying it, and what they are saying.
And when I talk about r-word jokes, I’m talking about people without any of the disabilities covered by the r-word making jokes at our expense. Telling a joke that has real-world consequences and hiding behind “It’s just a joke” is both cowardly and dishonest. And I feel like there’s a tradition among comedians to hide an immature impulse to do whatever you’re told not to do, behind some kind of pretense of moral nobility.
Give me a good dick joke any day. Seriously. Sex can be funny. Hate isn’t. At least, expressing hate is not funny. Tell some good jokes about asshole comedians who think hating people with I/DD is ‘clean’, though, and I might laugh.
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.
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.
So years ago I took a sexuality and relationships class from my developmental disability agency. The class wasn’t actually half bad and I learned a lot. One of the two instructors, though…
So there’s a bunch of us in the lobby of the building waiting around for class to start.
And they decide to do some kind of introduction to the class down there in the lobby before we go up to the room the class is in.
And there’s two instructors, a woman and a man. I know the man, he’s okay. But the lady is one of those people who’s secretly terrified of people with developmental disabilities and masks it with twenty layers of condescension. And they always think we don’t notice. We always notice.
So she’s talking down to us, and asking us what we expect to learn in the class, and so forth.
And a guy with an intellectual disability very deliberately asks, “Are we gonna learn about cunnilingus?”
She flinches, tries to recover, goes five times as sing-song, and says, “Woowwwwwww, that’s a biiiiiiiiig woorrrrrrrrrrrrrd.”
We were… unimpressed with her, to put it mildly. And she had no idea what an ass she was making of herself.
Anyway, I wish I could think quicker on my feet, or I’d have quoted Terry Pratchett:
“Hello, little girl,” he said, which was only his first big mistake. “I’m sure you want to know all about hedgehogs, eh?”
“I did this one last year,” said Tiffany.
The man looked closer, and his grin faded. “Oh, yes,” he said. “I remember. You asked all those… little questions.”
“I would like a question answered today,” said Tiffany.
“Provided it’s not one about how you get baby hedgehogs,” said the man.
“No,” said Tiffany patiently. “It’s about zoology.”
“Zoology, eh? That’s a big word, isn’t it.”
“No, actually it isn’t,” said Tiffany. “Patronizing is a big word. Zoology is really quite small.”
-Terry Pratchett, The Wee Free Men (exchange between a girl named Tiffany and a wandering teacher trading knowledge for food)
As it is, I think we all settled for rolling our eyes and the like, which our instructor of course missed entirely. Just like she missed the point of the guy choosing a word like cunnilingus when being talked down to…