Tag Archives: Death

Feeding tubes and weird ideas

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My favorie BADD post: Tube-ageddon.

I haven't had much time to write anything here about the hell I went through getting my GJ tube. I had every indication for a GJ tube. I had gastroparesis so bad it was starting to affect my breathing, in a way that doctors said was likely to result in infection after infection until I died. From the emergency room onward, doctors were saying my best hope was to get a feeding tube.

Yet the pressure I got from doctors, while in the hospital for one of those infections, was to just keep getting infections, go home, wait to die. Most of them wouldn't say that outright. But some of them did. Some of them we confronted and they absolutely agreed that the only alternative to the tube was death — which could have happened to me by now, without the tube. But they still insisted on telling me not to get the tube, basically that I was better off dead than with a tube. We had to rally a bunch of people on the Internet to call the hospital before they suddenly changed their tune. My pulmonologist told me she could tell exactly when I started getting people calling the hospital, because the tone in my charts changed instantly to “let's get her the tube after all”.

Most people think of all feeding tubes as the same, all reasons for getting them as the same, and so they believe in false generalizations about their capacity to prevent lung infections, or indeed cause them. But they aren't all the same. They're all different, and the reasons for getting them are all different.

I have gastroparesis. That means my stomach is partially paralyzed. In my case it became severe before it was diagnosed last year and confirmed with testing this year. It's probably due to neuromuscular problems inherited from my mother, who has autonomic neuropathy among other things, a common cause of gastroparesis. My symptoms are similar to hers so doctors are assuming whatever we have is related. Anyway, it makes food remain in the stomach a long time. After awhile, this means that you can't eat very much and you drop a lot of weight. (I may still be fat, but they tell me by the end I was burning muscle.) by the end I was having trouble keeping down two small cartons of Boost a day, which isn't enough calories to live on. I was already on a liquid diet so there was no less food I could keep eating.

It also meant that the stuff staying in my stomach was riding up my esophagus again on gas bubbles formed by food sitting in my stomach for ages. I could feel it happening several times a day. I'd belch and food or bile would ride up with it. If this happened overnight, my bipap machine would shove the stomach contents down into my lungs from my esophagus. This began happening several times a week, and from January until March I had about five lung infections requiring antibiotics. I never stopped taking antibiotics, by the time one course was over I'd be on the next. Which is dangerous in its own right.

So when I showed up in the ER a few days after a CT scan showing what they called a “ground glass appearance”, they had no problem admitting me into the hospital, and even in the emergency room they were telling me if I wanted to live I needed a GJ tube. This wasn't news to me. They had been talking about a feeding tube since last fall, when one more nausea med added to the five they'd started me on, made me able to go home without one instead. I'd been discussing with my friends what kind of feeding tube served my needs best as a person with gastroparesis. And the GJ tube had always seemed like the best option.

A GJ tube is like a combination of a G tube and a J tube. Half of it goes into the stomach, which is a G tube. The other part goes into the first part of the small intestines, which is the J tube. The G tube gives you the ability to drain your stomach contents out into a cup, and dump them down the toilet. This means that if you do it often enough, you won't have anything building up in there and going up into your lungs. Right now, even bile and stomach acid can build up to dangerous amounts because of my stomach not emptying often enough, so I take acid reducers and I drain my G tube several times a day.

The J tube portion is the part that stuff comes in through. I eat through it. I drink through it. I get all of my medications through it. This means that nothing has to come in through my stomach. Which means we are bypassing the worst part of my digestive system. Not that the rest of my digestive system is wonderful. My esophagus is slow, my stomach is slow, and my bowels have been producing blockages since I was a teenager. But with liquid food going into my small intestine at a fairly slow rate (one feeding in roughly twenty four hours, I wasn't able to handle the twelve hour version without getting very sick) I seem to be able to handle things much better than when it was going in my stomach. I love it. It's so much easier than feeling horribly sick all the time.

I still take nausea meds, but half of them have been changed to PRN instead of daily. So daily I take Phenergan, Reglan (which speeds up my digestive system), and Marinol. And I can also take Benadryl. Lorazepam, and Zofran as needed. I used to have to take all six of those things every day, so this has really cut back on the amount of medication I need, which is good because every single one of these meds is severely sedating and it was badly affecting my ability to think straight. If I were still trying to eat, I would be taking every single one of those nausea meds at the maximum dose, and still wouldn't be able to eat enough to maintain my weight.

[Photo of me holding my tube. The J tube section is visible, the G tube is hidden behind my hand, and there's a little cloth thing from Trendie Tubies around the base, with owls on it.]

But I had to fight for this tube. Even though it was the only way to save my life. I had to fight against people who were certain I was better off dead. And I needed the help of a lot of people on the Internet, to do it. When I did get the tube, it was done without a working anesthetic. And even though the local anesthesia didn't work on me, even though I was yelling and screaming, they didn't stop to give me more, they just kept telling me that the Versed meant I wouldn't remember it later. Yeah right. It seemed like the entire process of getting the tube was one giant clusterfuck after another, and like people were making it as hard for me as they possibly could. (Later, when I had to get the tube replaced, we discovered that Propofol is the med, in combination with others, that really does the trick to keep me unaware of what's happening.) They treated me like a child, repeatedly expressing the fear that I would pull the tube out like young children often do, and blaming me when part of the tube got lodged inside me, probably as a result of over zealous physical therapy early on that was a clusterfuck in its own right.

But I got the tube and I couldn't be happier with it. I feel happier and healthier. After aspirating reflux several times a week for months, I haven't aspirated a single time in the month or so I've had the tube. My nausea is well controlled. My brain and body work better. Despite a couple complications since then, it's still the best thing medically that's happened to me in the past year. And I'm still alive, which even by now I might not have been if I kept getting infection after infection.

[The x ray showing the tube inside my body.]

Why did I have to fight so hard for it? I see two major reasons. One is that I'm perceived by medical professionals as someone whose life doesn't matter much, doesn't have much quality of life. I'm autistic, they read me as severely cognitively impaired, I am in bed all the time, they don't see that I enjoy living as much as anyone else does, and they make that decision somewhere in their heads without even noticing.

The other reason is the way medical professionals see feeding tubes. I've been trying to read the writing of nurses and doctors to find out their views on these things. Not just the horrible ones. The ones who snark at patients on their blogs. But the ones who think they're compassionate and sympathetic and good at their jobs. But in one area that makes no difference:

They all think of feeding tubes as the beginning of the end. They see getting a feeding tube as the first sign that your life as over. Possibly that you belong in a nursing home, as if anyone does. When I made out my living will, the first question of “Where do you draw the line where you want to stop living?” was whether I wanted to live if it meant I needed a feeding tube. They see people with feeding tubes as the first stop on the route to a living death. Other things they see that way are using a ventilator, having a trach, needing any sort of similar mechanical assistance to survive.

My friends see it a different way. They see me as some cool kind of cyborg, with the oxygen, the feeding tube, and the Interstim implant that prevents spasticity in my urethra, allowing me to urinate. They say the sounds my oxygen concentrator makes sound almost steampunk. But then all my friends are disabled, they see adaptive equipment as cool, and as a means to living, not a sign you're dying.

Medical professionals have been shown time and time again, to rate disabled people's quality of life lower than we rate our own quality of life. And yet time and time again, they see themselves as the experts on what our real quality of life is. One reason I try to keep my lungs and my guts in good condition is that as a person who is autistic and physically disabled, I know that if I ever got bad enough to need a transplant, I'd probably die. Because they would take one look at how I sound on paper, and they would decide my life wasn't as worth living as that of a twenty year old who wasn't disabled except for the effects of their lung problems or digestive problems. (Lung transplant is the end of the line for severe bronchiectasis. My bronchiectasis is mild, I'm working hard at keeping it that way. Transplant is also the end of the line for very severe gastroparesis combined with other gut problems. I'm hoping I don't get to that point despite severe gastroparesis. Given how hard it was just to get a feeding tube, which is the standard treatment when you start aspirating this much and being unable to eat even a liquid diet, I don't know that I stand a chance at making the transplant list should I need one.)

I also had trouble getting home. People were asking me if I belonged in a nursing home, or at least in twenty four hour care. I'm not sure why. It's not like it's hard to care for a GJ tube. It's unusual, but it's certainly easier than my old med regimen, which was truly difficult and time consuming. Now we just mix them up, put them in a syringe, and stick them straight into the tube. Easy. Eating is easier too, no more worrying I will throw up, and you only need to set up the food once a day and press a button on a feeding pump. But everyone has this illusion that it's incredibly difficult, and the VNA loves to take people with tubes and stick us in nursing homes claiming they can no longer care for us on the outside.

[The feeding pump on an IV pole with the food (Osmolite, low fat, high protein, no fiber) hanging above it.]

I still don't understand what the big deal is supposed to be. By the time you get a feeding tube, eating is really hard. Either you're having swallowing problems, or something is wrong with your stomach. In my case, my stomach was emptying so slowly that I was constantly severely nauseated no matter how little I ate, I was dropping weight way too fast, and I was aspirating reflux caused by all the food sitting around for ages. I was quite possibly going to die from repeated infections. How the hell is a feeding tube supposed to be worse than that?

I can't even begin to comprehend the fear of these things. I mean I literally can't do it. It makes no sense. It's all based in prejudice. It has nothing to do with the reality of a feeding tube.

I thought the worst part would be not being able to eat. The most I can do is drink a tiny bit of ginger ale, and I have to be very careful even with that. But I don't miss food. The feeding tube ensures that I am never hungry, and always have the nutrients I need. The only times I have ever started craving food, were two separate days where I spent all day at the emergency room unable to use my tube. Each time I came home and wanted to eat or drink something I didn't normally want to eat or drink. But when I'm getting food regularly, it's not a problem. I barely miss eating at all. I never even think about it. Even the vivid dreams I'd been having about all different kinds of food, all those months on Ensure, have gone away. My body seems perfectly satisfied with what it's getting, and it doesn't crave things unless I can't use the tube.

And it makes everything easier. Food is easier. Medication is easier. Absolutely nothing is any harder than normal. It's more like dealing with something easy and mechanical, than dealing with anything hard. We did learn the hard way to flush it with coke after every medication, because by the time there was a clog, you couldn't get enough coke in to dissolve it. So we are dissolving the clogs before they can even form, by leaving coke in for awhile after every single time we use meds. I've also discovered it's possible to reduce the pressure inside me — which can prevent the meds and water from flowing into me as easily — by relaxing my body, especially my rectum, and then everything usually flows in pretty easily. So there are a few tricks, but it has overall been much easier than my life was before I got the tube.

So what is so scary? I don't know. I can't find anything at all scary about this. It doesn't mean anything horrible. It means I'm alive. Being alive is a good thing. I don't fear death, but I only get one chance at life, and I don't want to die just because someone else has decided my life isn't worth enough to them. And so I'm very much interested in anything that will keep me alive longer, whether it's a feeding tube or any other “scary” device used for keeping disabled people around longer than used to be possible.

A lot of people I know have those devices, the ones that medical professionals think your life is over. Feeding tubes. Trachs. Ventilators. Catheters. Ostomies. Central lines. All those things that seem to scare people to death, even though there's nothing scary about them. They prolong life, not end it. And I'm furious at every single doctor who urged me to go home and die rather than get this feeding tube and get a chance to live longer. That is simply not their decision to make, and they were bound and determined to make it for me until I got enough people on my side to convince them that the entire world was watching the crap they were trying to pull.

I am going to work as hard as I can, to change hospital policy so that nobody gets pressured in the way I did. It's incredibly difficult to deal with pressure to die, when you're already sick and exhausted and have no energy to fight back. And they do it in sneaky ways, so that if I had been delirious or something, which I often am in the hospital, I might not have recognized what they were trying to do. My experiences are far from unusual, many disabled people have been encouraged to die rather than get a feeding tube, or a vent, or something else that would allow us to live. My mother, who has many of the same conditions I do, is going through a mess where doctor after doctor refuses to treat her or perform surgery on her, and she keeps having to go back to the Mayo clinic because they're the only ones who seem to be committed to making sure she can live as long as possible. And as a disabled senior citizen way below the poverty line, she gets the “your life isn't worth it to us” thing from at least three different angles. This stuff isn't unique to my life, the pressure to die is everywhere.

But most disabled people, like most people in general, prefer to be alive. Being disabled rarely changes that fact, not on its own. And the fact that anyone thinks we ought not to, that their pity goes so far as to be a death wish aimed at another person, is so disgusting I don't even have words for it. But they are the ones who are disgusted at my advance directive, which tells them to keep me alive no matter what. I can hear it in the sound of their voice when they ask me about advance directives. Advance directives are supposed to be about making your own choices, but the choice to live is the least respected among them. They would rather I not be here by now, rather I got my sixth, seventh, eighth infection until my lungs finally gave out. I refuse to give them the satisfaction. I love being alive and a tube doesn't change that one bit, in fact it makes my life better.

 

I’m starting to heal here.

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The hospitalization started awful but got better after the Internet convinced the hospital that lots of people care what happens to me. Since not everyone has that resource, my goal once I get better is to work hard on a non discrimination policy that will prevent any other patient from going through what I went through.

I don't have the energy to go through the whole story again. But basically my gastroparesis was getting so severe that I could no longer keep up a minimal Iiquid diet and was also aspirating frequently as the gastroparesis got more severe (due to gas bubbles from food sitting forever in my stomach), leading to getting pneumonia so often that it was clear my life was in danger. And I was dropping weight in ways that nobody should ever drop weight, fat or thin. So I needed a feeding tube, the ER docs suggested a feeding tube before I even said I needed one, everyone actually on my case knew I needed a feeding tube… and I spent a weekend being pressured, by strangers who were not specialists in any of my conditions, subtly and not so subtly to accept death instead of a feeding tube.

The above picture shows I got the feeding tube, and am using it just fine for food and medication. Not without a whole lot of unnecessary pain and difficulty. Fortunately I have outside witnesses to nearly every single thing that occurred in this place. I can't go into it all because it's too fresh in my memory but someday I'll write more. I just wanted to let people know I'm still here, no thanks to some assholes I met along the way. But there have also been a lot of really great people, especially nurses, working here. And the longer I've been here the less crap I've gotten from people. Especially as they see the feeding tube working wonders in all sorts of ways.

(For anyone curious this is a GJ (gastrojejunostomy) tube, with entries into my jejunum and stomach. It allows me to completely bypass my stomach for nutrition and medications, and to drain gas and fluid from my stomach to help prevent aspiration. I'm already gaining back the weight I lost, I'm far less nauseated than I've been in years, and eating is incredibly easy. There may be complications along the way, but I haven't experienced one yet. And since the complication of the way I was living was eventually going to be death, I'm quite willing to take the risks involved.)

The gastroparesis diagnosis was more than confirmed a month or two ago when they made me eat radioactive eggs and traced their movement through my stomach. And the repeated aspiration pneumonias were resulting in some gnarly cat scans. It got so I was on antibiotics more often than not and getting sicker and sicker and something had to stop. I don't know if I'll stop aspirating entirely at night, though I sure hope so. But it was happening more than once a week for the past few months and it hasn't happened at all since the feeding tube was placed. But it was a fight the whole way to get the right treatment that even all the doctors who really knew my case insisted I needed, to get the tube inserted in a way that wasn't horrendous, to get adequate pain care after the massive fail with the local anesthesia, and to be allowed a few days to learn bed mobility and eventually transfer skills after the surgery (they seemed to believe that if I didn't learn instantly I'd become lazy and never learn, and refused to acknowledge any of the slow and steady progress I was making just because it didn't happen all at once).

That's more than I intended to write. I'm tired. I should be home in a few days, at which point the trick will be getting all the support staff trained in tube care. But they're already starting the trainings. So hopefully going home won't be too awful. I desperately want to see Fey again. I've been seeing way too much of the inside of this hospital and not enough of anything else ever since August when my first big aspiration pneumonia + gastroparesis clusterfuck hit. It turns out the gastroparesis is the answer to the “chronic nausea” I'd had, as well as the fact that I felt better if I could fast for extended periods periodically, so this has been going on a long times they just didn't pick up on it until I stopped eating solid food (and then only after they saw me not eating, because they didn't believe me as a fat person that I wasn't eating, even when I dropped 40 pounds too fast for it to be anything else).

Anyway I'm rambling. I want to get out of here but I have to stay the weekend. I don't want anyone else to ever be pressured towards death in the way I was (sometimes quite openly) yet I'm sure it happens all the time and I have to find a way to stop it. I never envisioned myself in quite this situation for some reason, even though I've been in similar ones. Feeding tubes seemed like things that happen to other people. Not that I mind it. I completely love the tube. I just never realized my “little nausea problem” would rapidly turn into a severe condition that demanded this kind of measures.

I want to go back to advocacy especially after the things I've seen happen to me and others in this hospital, I just have been too sick to handle it, and the lingering cognitive problems from delirium last fall haven’t helped. But if I can do anything about anything I will help the disability communities locally handle this situation because its horrendous.

 

“I’m the only one who can take care of you properly.”

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“Do you want a full bed bath?” she said. “I'm going to be gone for a full week, and I know you won't want anyone else doing it for you.”

Uh-oh. I made a mental note to ask her other clients if this meant whatbi thought it meant.

I usually don't get an entire bed bath at a time because it wears me out. But that wasn't the issue. I have very sensitive radar for certain warning signals from caregivers. It's a survival thing. And I freak out a little at any hint of “You need me, I'm the only one who can take care of you properly.”

The weird thing about it is she's not even that good at her job. I mean she gets the basics done. But she does a lot of things that seem little and aren't, if that makes any sense.

Like she scrubs too hard, which causes pain and, for people with fragile skin, injury. She isn't able to control where she puts her hands. By which I mean she seriously thinks she's staying within certain bounds and she's not. Which means she gets lotion on my hands instead of just my wrists, which makes my eyes burn when I rub them later on. When she washes my vulva she goes all the way back to my anus despite attempts to stop her, which can cause infections. She can't aim properly when putting anti-fungal cream on, so my skin still burns when she's done. And no matter how many times I tell her to do otherwise, she tries to pull a towel out from under me before I have my pants on. Which can result in Desitin getting all over the bed sheets. She’s also one of the ones who inadvertently claws my vulva and thinks she doesn’t have fingernails.

More worryingly, she can be borderline abusive. You know how people slam cupboard doors and bang plates onto the table when they're angry? She does that to people. It's painful and alarming. She scrubs you even harder, slams your body around, and is generally rough with you.

Even when she's not angry she can be worrying in this department. On days when I'm unable to respond to her or move well, she treats me like I'm an object, not a person. And she can do the same things when in a hurry. It's like we are just things to her, not people, and the more severely impaired we seem to her, the more we are objects.

And she does a lot of things primarily for her convenience. Once she forced someone I know to stand up rather than get the bed bath he needed because it was slightly easier for her, and it exacerbated the injury that put him in bed to begin with. she didn't appear to care.

None of these are the attributes of someone who we all miss when she's not around. Let alone someone we feel we couldn't do without.

But her statement worried me a little. So I asked around. It's handy at times to live in a building where a lot of people have the same caregivers. Especially the people who bathe us, like her. They tend to be shared among more of us because they only come for the duration of the bath and any other personal care they provide.

Anyway, it was not hard at all to find someone who confirmed my suspicions more than I ever guessed. It seems that she has written it into her will that her pets are to be killed when she dies, because nobody could possibly care for them like she does. That's more of a warning flag than I wanted.

People have an obligation to our pets. And part of that obligation is to do everything in our power to ensure that they will have a good life if they outlive us. I know that Fey will miss me greatly, and I hope that she will not try to starve herself if I die. But I have plans set up for AnneC to find her a home or, as an absolute last resort, to take her in until she can find her a home. I would never have her killed just because I was dead.

To kill your pets when you die is selfish and reflective of a really disturbing and warped take on the world. Part of that take on the world is almost always “Nobody could take care of them like I do.” Which is also a huge part of the mentality behind a lot of animal hoarding and other abuse.

It works the same way with humans. “Nobody could take care of you like I do” always results in messed up behavior towards the person in question. It can range from minor abuse and neglect, to murder.

Parents who think nobody but themselves can take care of their disabled children are disproportionately represented among people who murder their disabled children. They often don't seek out help to take care of their children, and don't plan for a future when they are not around for their child. This means that even if they don't kill their child, they're setting them up for the awful situation the parent sees as inevitable after their own death. It becomes a self-fulfilling prophecy. Whatever they believe, this is not love.

And caregivers who think this of their clients can be just as dangerous. At minimum they abuse their power over us. They may try to get us to see other caregivers as not very good. Even when they're better than the person in question. They frequently treat us like things, because to see someone in this way is to fundamentally see them as a thing. And at worst, they too can kill us.

I know a disabled guy who dated a nurse who had this attitude to her patients. He believes she was an “angel of mercy” serial killer who killed several of her patients. (Such serial killers are far more common than the Jeffrey Dahmer types, but receive little attention from the media or law enforcement. Their victims are only disabled people, after all.) She frequently talked about killing all her pets and everyone else who depended on her before she died. He realized she saw him in this way, and got out of the relationship fast.

I don't think that this caregiver kills her clients or anything. And I don't think I'm in any serious danger of more than being treated like an object by her, or else I'd never allow her in my apartment. But knowing this about her means I can be on my guard for more serious warning signs in case she does anything more disturbing.

But in general. Any sign of “Nobody can take care of you like I can” should put you on your guard. It nearly always results in something bad, and sometimes results in catastrophic abuse or neglect, or killing.

Mini-feline-ethics post: the power of life and death

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I haven’t yet got to my third post about feline ethics, which is going to be about power. But I just found out today that an article I thought was only in a print copy of Mouth Magazine is also published online by Disability Studies Quarterly.

I had gotten the article because someone claimed in response to a feline ethics post, that everyone who loved animals would agree that euthanasia is a good thing. And AnneC pointed out that this is not in fact the case, and that she (as I do) has serious problems with the overuse of euthanasia on cats. And I remembered this article. Unique in breaking the massive taboo against questioning pet euthanasia:

Disability Culture Meets Euthanasia Culture: Lessons From My Cat

The biggest power we have over cats is the power of life and death. Whether or not we swear we would never use it we still have it. It is not a crime to take a cat to the vet and have her killed because she was scratching the furniture, or because she is homeless. We have this power and cats know we have this power. Every animal knows that a bigger, stronger animal is a potential threat to their life. And this is just talking about uses of euthanasia that have nothing at all to do with terminal illness. I won’t go into everything I think, but suffice to say that I think in a better world euthanasia would not be used for trivial reasons ever, and would not be considered the first and best option (rather than, say, treatment and palliative care) the moment a cat is diagnosed with something scary. And there would be better pet insurance than currently exists, and there would be more research into feline pain management (very different from humans), assistive technology, and modifications to the home. And only then should euthanasia even be brought up as an option, if it has to be. We have too much power, we are too frequently persuaded to use it wrongly, and that we use it out of love and guilt doesn’t make the cat any more alive in the end. (And I’m as guilty as anyone else.)

Aspie Supremacy can kill.

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A disclaimer: I don’t believe in real distinctions between aspies, auties, LFA, and HFA. When I use these words I am discussing the beliefs of people who do believe in them. Edited to add: aspie supremacy is a shorthand and people should be aware that the prejudice contained within it can and does affect many with the AS dx.

I think I am the person who coined the term autistic supremacy. At the least, I came up with it without having heard it before. It was 1999 and I came up with the term to explain certain trends to my psychologist. This, by the way, means that those people who are running around gloating about how us autistic activists brought these people’s offensiveness on ourselves, or ranting about how nobody cared until recently? They have no grasp of the history. None at all. I have been opposing this in all its forms for eleven years and know that others have been doing the same.

Others may use the terms differently and I don’t claim some kind of ownership over the definition but here are the ways I use these words.

Back then it was just a tiny number of people who thought this way. When I used the word, I meant people who went beyond just wanting equality. They thought they were better than nonautistic people. Not just in satire or jokes but for real. Some of them went even further and considered nonautistic people worthless or even worthy of death or being rendered nonexistent by (a distorted idea of) evolution.

A friend tells me this sort of thing is a normal, perhaps even necessary, part of a minority group’s journey to self-acceptance. Maybe, but it still leaves a bad taste in my mouth.

Some people consider separatism a form of supremacy. I don’t, not unless the separatists are the ones with the power. A white separatist is a white supremacist and a segregationist. But when a minority (in terms of power) is separatist the reason is usually self-protection as much as anything. Sure, some supremacists become separatists but that doesn’t mean all separatists are supremacists. I am not a separatist but I understand the impulse to avoid those with the power to do you great harm.

When I use the term aspie supremacist I mean something more specific. I am referring to “aspies” who think they are superior to other autistics, or to “AS/HFA” who think they are superior to “LFA”. In practice this means, “We aspies are just different but autistics are defective”. “AS/HFA is part of human diversity but LFA has no value”. It’s the Carleys of the world cringing at the very idea of sharing a label with people who wear diapers (the joke’s on them as many “aspies” wear diapers too). It’s any and every way that the value and contributions of “AS” and/or “HFA” people a put above the value and contributions of “autistic” and/or “LFA” people.

Aspie supremacy is disgusting and despicable. I understand that all of us absorb certain cultural values but that is what makes aspie supremacy more dangerous than general autistic supremacy.

Autistic supremacy can do damage but it’s limited damage. They have neither power nor numbers on their side. They can rage on the Internet. They can cause damage to the few people around them offline. Even if one decided to cause as much harm to everyone around them as possible it would be tragic but in no way equal to the harm done autistic people all the time. Usually the most harm they do is getting people to believe that most autistic activists are like them. They just don’t have the power to do wide-scale harm.

But aspie supremacists… where to start. Their ideas are essentially very similar to the ableist society we all live in. A society that values “high functioning” whatevers over “low functioning” whatevers where the further you are from the norm the more “low functioning” they call you. Have you ever wondered why some of the people who hate autistic activists the most are often just as willing as the aspie supremacists to put AS/HFA in one corner and LFA in the other? To say “Maybe aspies are part of human diversity but Real Autistics ™ are defective?”. It’s because the aims of aspie supremacy are very close to the views of those in power. And to someone like me it’s a fricking slap in the face, and worse.

I am far enough from the norm that even my talents and objections do not keep me away from the idea of “LFA” and out of grave danger that puts me in. My body has permanent and life-threatening damage, the kind most common today in places where there are no doctors or vaccines, and all but forgotten in America. That’s because medical professionals have not seen me as a valuable enough person to treat. Once while I was beginning to go septic I heard one medical professional tell another I had the cognitive functioning of an infant (something I don’t believe of even people with the lowest IQs). I had no way to contradict him because I can’t speak and was too weak to type or do anything but squirm and wail.1 I have heard professionals say out loud that my life was not worth saving, that I really wasn’t a person, nobody home.

This means I am vastly more in need of being seen as an equal than people closer to the norm are. This is the part that neither aspie supremacists nor anti-autistic-activist types ever seem to want to get: On average the further from the norm you are, the more it is literally a matter of life and death that your value be seen as equal with the people with the most power. (I know there is life and death stuff for those closer to the norm too but we are talking averages.) So aspie supremacy is a threat to my life in a way that general autistic supremacy is not. Aspie supremacy is telling those in power, “You are right about those auties/LFAs/whatever, but not about us aspies. Why don’t you just let us in to that big room full of valued people, and close the door in the face of those who need the protection of that room even more.”

Also, anyone who argues that aspies should be protected from institutions (of all shapes and sizes), aversives, unproven medical treatments, and the like, but that LFAs “need” those things? That it’s a tragedy when someone kills an aspie but understandable (and perhaps even preferable) when someone kills an LFA? You and anyone who listens to you is doing the exact same thing. The more vulnerable you are to the worst of the ways we can be treated, the more protection you need from the idea that it’s all worthwhile or understandable for you if not for the more normal ones. This too is reminiscent of aspie supremacy in different clothing. It’s all more and more devaluation and it’s endangering the rest of us.

I know that to many aspie supremacists it doesn’t feel like that’s what they’re doing. It feels like they are just stating common sense, that aspies have more valuable skills, more logic, less dysfunction, whatever, than other autistics. But that’s because having a bit of relative privilege renders them unaware of the full consequences of their actions. They don’t realize that they have things backwards — the more devalued you are, the more you need equality, the more you need to be considered another important part of human diversity, etc. Not the less. And “less” is what aspie supremacy ends up meaning to those of us who (even when we have some very valued skills in a few areas) are more vulnerable to devaluation and all of it’s effects. Including the lethal ones.

1 Edited to add: When I say this I am not meaning to imply infants should be devalued. Generally when a medical professional makes the rapid judgement that someone “has the mind of an infant”, it’s a code word for “nobody’s home and we can do whatever we want”. This does say a lot about how infants are devalued.

Right here, right now.

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In my last post I talked about my tendency to have an automatic and instinctive assumption that dead people were still around. Again, regardless of my current religious beliefs at any given time — I am not talking about heaven hell or purgatory, not talking about ghosts, and not talking about living on in my heart. I mean the literal assumption that they are still living. Except possibly in another time period that I have no personal access to. But I process other time periods as “now” instinctively too, so it all gets very confusing and not conducive to the English language.

I got to thinking about whether it was a more general thing about my conception of time, or some other thing beyond specifically about people who have died. And I realized I do it about objects that have been lost or irretrievably transformed, and places that have been destroyed or transformed.

When I was a kid, there was a VIC-20 game called Omega Race, and a book having to do with a character called Underdog. Both of these objects were obviously and completely lost. Not coming back. I had no particular attachment to them beyond other similar objects, but I insisted on scouring every conceivable location for them over and over again. This was not (as it looked) because I thought I might have missed a place, or (as my brother said of searching for lost items) because I “kept looking in my favorite locations hoping they would turn up”. It was because they had been right here. Right in front of me. And therefore they were right in front of me now. And there must be something wrong with me that I could no longer reach out and touch them. Because in my mind back then, “They are right here darn it, I have grabbed them a zillion times, and it makes no sense that I cannot grab them now.”

If that was traumatic (and it was), when it happens with places it is even worse. I know somewhere deep inside me that there is a Video King store, right near D&J Hobby. You go in and there are videos and Nintendo games for rent. Each video has a little tag you take off and bring to the register, and there are different ones for VHS and Beta. This exists. Now. But I go there later and it is replaced or empty. And that is hellish, because it should exist and there is no reason for it not to.

(It’s strange. Sometimes things work like this, and sometimes the moment something is out of direct perception, it never existed — I can turn around and not remember what was on my other side, move a hand and the thing I am touching is no longer there and totally forgotten. I wonder what the difference is, and why I seem to have both of those reactions instead of the reaction I have only intellectually memorized, where things change and the past and future stay firmly outside of “now”, and you remember things as past while knowing it is the past and not now. I seem to overshoot that mark in both directions.)

Sometimes this even goes for tiny changes, so that, for instance, I perceive myself as currently and simultaneously in every location I have ever been. And it also happens with myself growing and changing, such that for a long time I had constant silent and wordless conversations with my “past selves” (for lack of a better term) because they were all “right now” at once. And for awhile I would walk along routes that took me to places from my past (which I was sure were still there) and if I happened to find people from my past I would triumphantly interact with them and expect them to be as excited that they were still there as I was. (I had no way of explaining this to anyone though, so if anyone wonders the real reason I at one point started showing up at both of my elementary schools and giving long nonsensical reasons for it if asked? This is the real reason. I just had no way of saying it, so I made up the only responses that were available at the time (borrowed from dystopian novels, I think), with disastrous results on one such occasion. I knew you had to give responses, I didn’t know they had to pertain to what was going on inside my head, and if I had known I wouldn’t have been able to give one anyway.)

So I know this is how I have perceived things ever since I was old enough to figure out that unseen objects still existed (which I figured out late and sometimes still don’t know — it’s a skill that doesn’t permanently take for me, it comes and goes). I know it is not how most people perceive things, from the reactions I have gotten when I bring parts of it up with people. I can sometimes intellectually decide things are different than this, but my bones (or my brains) say otherwise. I don’t know if it’s due to my temporal lobe oddities or something else, but it is definitely related to how I perceive dead people. It’s one of those things I could never talk about or ask about growing up, where maybe if I had been able to I would have “corrected” myself. Or maybe not. But it’s still terrible to be confronted with the solid evidence that something that is right now right here, is… gone, or changed, or different. And yet even past that point, my mind still believes it is right here.

There’s something about death I don’t understand.

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There have been two significant deaths to me recently. My grandfather died just before Christmas. And Judi Chamberlin (the first psych survivor I saw besides myself who challenged the leadership in that community by the likes of Szasz, Laing, Breggin, and other professionals who upheld many of the destructive power structures within psychiatry while claiming to be rid of them — she wrote a really good book called On Our Own) died this weekend.

And yet again I am coming up against my instinctive responses to death, that don’t seem to be all that standard. (Note that these are instinctive reactions and have been totally unchanging regardless of my religion or lack thereof. The second one especially is not a view or belief, it’s an involuntary reaction on the same level as most people’s assumption that their house looks the sane every day unless something specific changes it.)

For one thing, my memories of people who have died do not do that peculiar transformation I see in other people’s minds. That is, I remember the people the exact same way I remembered them in life. They don’t transform into saints, the bad memories don’t go away, I do not suddenly see them as all good and no bad. I know that this steps on a massive taboo. I did not know how massive until I saw people judging my entire character on the fact that when a particular person died a while back I did not suddenly cease to criticize the dead person’s actions (even though the dead person had called for dreadful things to happen to people like me, and even though the dead person continued after death to have the level of influence that would make those bad things more likely).

Whereas I find it incredibly disturbing that when people I know die, even people I mostly like, suddenly they are transformed in eulogies into people who never existed. Sometimes the eulogies even turned those people into the opposite of who they were in life — a total gossip will be described as never having an unkind word to say about anyone. This strikes me as frightening, disturbing, and disrespectful, but then my way seems to strike most people the same way. (Hint: If I were really the monster some people have made me into for viewing things this way, I would not care about how disturbing I find it to disrespect the dead by turning them into people they never were.)

So that was thing number one about my reaction to death that seems to be weird.

Thing number two is related but different. This is that not only does my memory not suddenly change the person into someone they weren’t, but that my memory does not change at all. The person is still there as far as I am concerned. I continue to use the present tense, not just by habit but because as far as I am concerned the person still exists even when I am fully aware of the fact of their death. I have heard of something superficially similar happening during denial but this is not denial. It happens whether I am grieving a good deal or grieving not at all. I simply don’t see the person as gone. I don’t see people who died thousands of years ago as gone either, I just see them as… temporally inaccessible or something. I grieve for our inability to inhabit the same time-area as each other anymore, but I don’t grieve for their nonexistence because they seem to exist, just somewhere (or rather somewhen) I can’t share with them now.

The first thing makes me into a terrible person in some people’s eyes. The second just seems to make me strange. But both of them are just how I am, I can’t imagine what it’s like to be otherwise. I mean I won’t go to a funeral and talk about how much I can’t stand the dead person, but I see nothing wrong with discussing their faults somewhere else (and I see a good deal wrong with actually changing descriptions of who the person is and what they have done just because they are dead — it’s one thing to refrain from talking about the bad points with people who are grieving, but actively claiming the opposite? Just… no, that erases the person more than death ever could).

And as for the second thing (which I find more interesting by far)… what is it about me that doesn’t respond the same way most people seem to when death occurs? I have talked to a lot of people and very few respond the way I do, or even understand my response. And I don’t understand theirs either. Why is it that most people process death so differently? Why does death seem to me almost as if it didn’t happen? Is there something about death I just don’t understand?

(And before anyone asks, I doubt that either one of these has to do with autism. Many of the differences between me and others on both counts are things I have observed both within and outside the autistic community. I have only met a few people who see both the way I do.)

Oh, and I am not printing comments that claim I am evil or something. It’s one thing to discuss different viewpoints about death in this situation. It’s a whole different ballgame to use my personal reactions to two recent deaths of a relative and a role model to castigate me for not mourning “properly”. Heed the difference, I will not tolerate the crossing of that line.

R.I.P. Harriet McBryde Johnson

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I only knew her from her writing, but I cried when I heard.

And I’m still having trouble believing she’s dead. She was so fundamentally there, and now she’s not there. I’ve edited this to include a lot of the links that were missing last night, plus a quote.

Unspeakable Conversations is her most famous article.

The Disability Gulag is another.

Not Dead At All is another.

She wrote a book called Too Late to Die Young: Nearly True Tales from a Life. One excerpt is here.

She wrote another book, this one fictional, called Accidents of Nature.

She did a talk at the Holocaust Memorial Museum called Medical Ethics: Legitimizing the Unthinkable, and she answered questions like What is a disability? and Can we talk about cure?, Why as a kid did we protest telethons, and So let me ask you, when you think about this question of cure and what you saw in Deadly Medicine.

New Mobility named her Person of the Year in 2004.

I’ll end this with a quote by her from Too Late to Die Young. I wish all autistic people who think that they’re non-disabled just because they find pleasure in being autistic, would read it and rethink what they think they know about the experience of disability. I think it exemplifies the core of what she was trying to do, what a lot of us are trying to do. And in the end it speaks for itself:

My path is constrained but endlessly varied. I watch the sun move up in the morning sky and in and out of clouds, take in the changing light that constantly reinvents the cities classic, composed beauty. I feel the moist air roll over my just-washed skin, breathe in the odors of sea and flowering trees and restaurant grease. Some of the best mornings are the mornings when nothing happens, when there is no story but the continuing relationship of this old city with the ocean that roars just out of sight and with the living jungle that tentatively tolerates our existence here.

How is it possible that nondisabled people tend to feel sorry for me? It still takes me by surprise. Peter Singer couldn’t imagine a disabled child enjoying a day at the beach and he’s hardly alone. The widespread assumption that disability means suffering feeds a fear of difference and a social order that doesn’t know what to do with us if it can’t make us fit its idea of normal. When we seek what we need to live good lives as we are, we come against that wall. Why bother? the thinking runs; all they can do is suffer. When nondisabled people start learning about disability, what seems most startling, most difficult to accept, is the possibility of pleasure.

For decades, little noticed by the larger world, the disability rights movement has been mobilizing people from the back rooms and back wards, along with more privileged people like me, to speak plainly about our needs. We make demands. We litigate. Run for office. Seize the streets. Sit through the meetings. Mark up the drafts. That kind of work has changed the world and we need to continue to do it.

But we need to do something else besides, something that may be difficult but is, I think, vital. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.

I’m talking in part about the pleasures we share with nondisabled people. For me, those include social engagement of all kinds: swapping stories, arguing hard, getting and giving a listening ear. A challenging professional life. Going to movies, concerts, and exhibits. Wearing a new pair of earrings. Savoring the afternoon hit of Dove dark chocolate. I enjoy those pleasures the same way nondisabled people do. There’s no impairment; disability makes no difference.

But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that might seem a bit odd.

Let me give some examples.

John Hockenberry rolls across the Brooklyn Bridge self-propelled in a manual wheelchair. As he describes it, it’s a high no one but a hotshot para can really know.

A nation within a nation, of Deaf people, capitalizes its name to demand recognition as a language group, equal to any other in dignity and ferocious beauty.

Barry Corbet, a hotshot para now falling apart, is stuck in bed for several weeks with a pressure sore. As he lives with one marvelous view, he says life doesn’t go away; where would it go? he says life has never been richer or more juicy.

In an essay on smell, Helen Keller wrote that she could never warm up to another person who did not have a distinct and recognizable body odor.

After decades of torment, Professor John Nash recognizes his delusions for what they are and lets voices and visions and mathematical creativity cohabit in a mind unlike any the world has ever known.

My friend Kermit, a quad on a budget, goes out to lobby the legislature and finds a coffee under way. He can’t grasp with his hands so he makes a legislator feed him a donut. The last lobbyist out removes his clip-on tie.

At a summer camp, a mentally retarded boy badgers a girl in a wheelchair to teach him to play checkers. He knows he’s slow and she’s bored, but he won’t give up. Then something clicks and her explanations make sense at last and he sees the patterns and wins the game. For the smart girl in the chair — for me — it’s a humorous, humbling lesson. For the slow boy, there’s joy in pushing his intellectual limits. The peculiar pleasure is unique to each of us, but it’s also shared; the sharing makes a bridge across our differences.

Throughout my life, the nondisabled world has told me my pleasures must be only mental, never physical. Thinking to help me, it has said my body is unimportant. I respectfully disagree. For me, the body — imperfect, impermanent, falling apart — is all there is. Through this body that needs the help of hands and machines to move, that is wired to sense and perceive, comes all pleasure, all life. My brain is only one among many body parts, all of which work through one another and cooperate as best they can.

Some people, disabled and otherwise, conceptualize a self distinct and apart from the body. I may at one time have done so. I’m not sure. I know it is somehow possible for me to talk about me and my body as though separate, even though my mind and heart say we are one. At this stage in my life, my body constantly makes its presence known as needed, telling me with an urgent pain to deal with a wrinkle under my seat belt, or reminding me with a tremble or ache or flutter of its desire for food or rest or some other pleasure. Now the body I live in doesn’t only affect me. It is me.

The nondisabled world tells disabled people generally that our lot is unavoidably tragic, and if we’re smiling, we’re smiling through tears and despite suffering. In the face of these powerful social forces, I believe that living our strange and different lives, however we choose and manage to live them, is a contribution to the struggle. Living our lives openly and without shame is a revolutionary act.