This isn’t a post I like to write. The idea to write it always comes after someone, who is not communicating with me in good faith, approaches me and makes snide remarks about how I can possibly need a feeding tube if I’m fat. Except they usually go beyond calling me fat. They usually make some reference to my weight that makes it sound like I’m unusually fat, just to make things worse. In one case, a known repeat cyber-bully (he has made threatening phone calls to a friend of mine — if I’d recognized him on sight I’d have deleted his comment unread) even told me he’d lost some relatively minor amount of weight during the course of a disease I don’t even have, and that therefore since I was still fat, clearly I couldn’t have any of the diseases I do have. It’s clear that most of the time, these people are not actually interested in hearing my answers to their questions. They are here to take pot shots at my weight, and to imply that I’m not really sick.
But the thing is, even people who are not bullies have questions like this in their minds sometimes. And many people who are fat themselves, can be slow in recognizing that they have a disease. And so can the doctors of fat people, who have all the same assumptions about fat and weight loss that the rest of the world has. So understand when I’m writing this… the bullies didn’t goad me into writing it. I’m writing it because it’s an important topic to understand when it comes to healthcare for fat people.
And because fat people die every single day due to inadequate healthcare:
When we get sick it’s recognized less often.
We’re more likely to be told to go home and lose weight and forget about whatever symptoms brought us in.
If our disease causes unexplained weight loss, that will initially be seen as a good thing, even if the disease turns out to be cancer. (Unexplained weight loss is always a serious medical symptom that needs checking out, no matter how much you weigh to begin with.)
If our disease causes weight gain, then we won’t be taken seriously either, we’ll just be blamed for the weight gain. (This happens all the time with Type 2 Diabetes, which sometimes causes weight gain rather than just being caused by it.)
Due to bad experiences with doctors, many fat people won’t seek healthcare even if we are dying.
These are very serious problems, and any Internet bully who adds to these problems is contributing to a lot of suffering and death for fat people and our loved ones. To the ones who bug me relentlessly — see how funny it seems when it’s your mother with the same diseases I have, and she dies before she can get adequate healthcare because her doctors aren’t as on-the-ball as mine were.
So here’s the thing: I have gastroparesis. That’s a partially paralyzed stomach. It’s one of a number of conditions classified as motility disorders, which are disorders in the ability of your body to move food efficiently down your digestive system. It’s not diagnosed by weight, it’s diagnosed by a test where you swallow radioactive eggs and they see how long it stays in your stomach. Mine stayed in my stomach too long, therefore I have gastroparesis. End of story, there’s no arguing with that.
Symptoms of gastroparesis are a weird thing. With many diseases, the degree of symptoms is roughly the same as the degree of how severe the actual cause is. Gastroparesis is different. You can have severe symptoms with fairly mild slowing of the stomach. You can have very mild symptoms in a stomach that’s almost stopped altogether. Nobody knows why this is.
Symptoms of gastroparesis include nausea, vomiting, reflux, bloating, vomiting up undigested food from three days ago, loss of appetite, loss of desire to eat even if you technically have an appetite (you feel starving but can’t make yourself eat), feeling full too easily, weight loss, blood sugar problems, and occasionally weight gain. (More on that later.)
I have had most of the symptoms of gastroparesis for a very long time, and I also have symptoms of motility problems in my esophagus going back longer. When things really came to a head for me, I had stopped being able to keep down any food except broth and occasional, tiny servings of grits. Then I got aspiration pneumonia from the associated reflux. Then I landed in the hospital and launched into what we now know was skating on the edge of an adrenal crisis, but back then we had no idea.
Being fat delayed my treatment.
People have this bizarre view that if a person loses weight, they just go from fat to skinny. They also have this bizarre view that it takes eating a lot to stay fat, and that anyone who isn’t eating a lot instantly goes from fat to skinny. So when I told them “I’ve been eating nothing but broth and grits for weeks, and my weight is dropping” they didn’t believe me. They didn’t believe me, in fact, until I had been in the hospital under constant supervision, eating absolutely nothing, and the weight continued to drop off faster and faster. Finally they got a weight on me, and freaked out at how low it was compared to my last weight in the doctor’s office. They said that I was burning muscle and that you can die of that, especially if it starts affecting your heart. It didn’t matter that at this point I was 200 pounds (I’d been 245 to begin with), which is still technically fat. Everything the doctors told me, said that rapid weight loss from failure to be able to eat can kill you before you even become thin. But it took seeing me failing to eat every day before that knowledge could break through their own biases.
So they embarked on a program to bring my weight up. Yes, I said bring my weight up. Because if you go from not eating, to eating a sensible amount of food, then that is what is going to happen, no matter what your weight is at the moment. The fact that I weighed 200 pounds did not give me the magic ability to start eating a normal amount of food and keep losing weight. That’s not how human physiology works.
They put me on every nausea medication they possibly could. I ended up on a cocktail of Reglan, Zofran, Phenergan, Ativan, Benadryl, and Marinol. Prior to the Marinol, even that combination wasn’t quite enough, and they were seriously considering putting in a feeding tube. They had, at this point, done their preliminary diagnosis of gastroparesis, and they were sure a feeding tube was in my future. But they were able to send me home on a diet of Ensure Plus and lots of nausea meds. It worked for a few months.
But my gastroparesis symptoms only got worse. They were getting worse in two areas. One, I was refluxing stomach fluid into my lungs and getting aspiration pneumonia a lot. The aspirations were happening several times a week, and I think I got pneumonia something like 7 times that year. With bronchiectasis to make things even worse, the pneumonia was going to kill me. Secondly, I was losing weight again. I had brought my weight up to 223 pounds at my best, but then it went down to 193 at a point when I could only keep down one Ensure a day. It went down that fast within a couple of weeks.
So they agreed I needed a feeding tube if I were to survive. They didn’t agree that I should want to survive, but that’s another story I’ve told before. They did agree that I needed a feeding tube in order to survive. And eventually I got that feeding tube.
The thing about feeding tubes, for any skeptics out there? Is that they don’t give them out to people who don’t need them. Yes, everyone has heard of rich women who diet by using nasogastric tubes. But this isn’t a nasogastric tube, it’s a GJ tube. And I’m not rich, I’m on disabled adult child benefits, Medicare. and Medicaid. Literally the only way to get a feeding tube on Medicare and Medicaid, is to desperately need one. Literally the only way to get this particular hospital to place a feeding tube of this nature, is to desperately need one. Anyone who can see that I have a feeding tube and still questions whether I need one, all I can say is they have no business advising anyone on the practice of medicine because that ain’t how it works.
The above feeding tube? Only way to get it is because it’s medically necessary.
So why is a feeding tube medically necessary in a fat person?
Because feeding tubes are given for a very wide range of problems. In my case, there’s two big problems that are simultaneously solved, or at least made much better, by the same feeding tube.
1. I can’t eat sufficient food to maintain my weight, or even to drop weight slowly enough to be healthy. My stomach doesn’t work, so I have to bypass it by putting food directly into my intestines.
2. I aspirate stomach fluid, which can be drained out of one half of my feeding tube. Continued aspirations would result in repeated infections until eventual death.
It’s the first one people don’t seem to grasp.
I’ll make it very simple: You can die from complications of rapid weight loss, before you ever become thin. You can put a strain on your heart, you can dehydrate, there are a million ways to die from malnutrition or dehydration before you become thin. And it’s not best medical practice to sit around watching a person waste away, waiting until they become below a certain weight before you become concerned that they’re doing things like burning heart muscle.
Even if you manage to become thin without dying, your body is wrecked at that point, and it’s going to be harder to heal you and keep you alive than if the tube feedings started while you were still fat. My body had a lot of problems and I never even made it to thin.
I’ve consulted with nutritionists on the matter, and they’ve repeatedly told me that my goal should not be weight loss. My goal should not be weight gain either. My goal should be to stabilize at whatever weight my body seems to want to stabilize at, and then stay there. Any rapid, unintended weight gain or weight loss is a problem that needs to be dealt with by adjusting the way my tube feedings are done.
For what it’s worth, right now I weigh 178 pounds. That is 67 pounds lighter than I weighed when all of this started. Most people would call losing 67 pounds without intending to, to be symptom of a major medical problem. That is how every medical professional in my life has treated the matter.
The only people who goad me about how fat I supposedly am (and they always add at least 100-200 pounds to their estimate of my weight) are people online who only see me in pictures. Offline, people are constantly asking me about having lost weight. It’s not subtle. It’s not even close to subtle. My clothes hang off of me. My pants and skirts fall down if I don’t use belts or suspenders. My entire facial shape has changed. Everyone who hasn’t seen me in awhile tells me I look like I’ve lost weight. Medical professionals express extreme worry about the amount of weight I’ve lost. I’ve had random nurses come up to me in the emergency room and say “Oh my god, are you okay, it’s the gastroparesis and malabsorption making you lose all that weight, isn’t it?” and things of the like.
Only on the Internet can you lose 70 pounds so rapidly that it scares your doctors, and then be told how fat you are for not instantly losing 70 more.
I may gain some of this weight back now that I’m on steroids for the adrenal insufficiency, which is another condition that can cause weight loss.
But back to weight and gastroparesis.
Not only is it not true that only thin people get gastroparesis. Not only is it not true that very fat minus a lot of weight can still equal fat, if you were fat enough to start with. But gastroparesis can actually cause weight gain.
It works like this:
Gastroparesis causes the amount of calories that you get, to be restricted.
Your body at first loses weight.
Then your body goes into starvation mode. It notices that there are fewer calories. So it begins trying to hang onto every single calorie for dear life.
At which point your body gains weight again.
That’s common for a lot of diseases that cause restriction in calories, and can be especially common in diseases where the symptoms vary day to day, so the amount that you can eat varies as well.
So “How can you have gastroparesis? You’re fat!” Doesn’t work on so many levels.
But this kind of thinking kills fat people who have diseases like this one. It kills fat people who have anorexia, who can’t get treatment because their body weight isn’t low enough. It kills fat people in general. The idea that you can’t remain fat while having a disease that affects eating in some way, is extremely common and extremely deadly to any fat person who ends up with such a disease. And the idea that we only deserve treatment if we’ve become so starved that we are skinny (at which point it may be too late to save us), kills us as well. Every. Single. Day.
I find it ridiculous when people talk to me about how much I’m supposedly eating, anyway. The only food I take in is a nutritional supplement called Osmolite. It’s pre-mixed to be a certain number of calories a day. I take even fewer calories a day than are in that mixture, because I don’t feel like I need the full 1500. There is no other source of food for me. Any food I don’t eat by the end of the day is poured down the drain. Literally everything comes through the feeding tube. So don’t give me shit about ‘overeating’, you clearly don’t know what you’re talking about. For whatever reason, my body wants to be about 180 pounds, and has done ever since I had a period of starvation in my early twenties. And it’s honestly none of your business.
So if you ever hear someone running around talking about any fat person in terms of, “She can’t really have a condition affecting food intake, or she wouldn’t be fat,” then point them at this post. If you ever hear anyone saying that only thin people need feeding tubes, point them at this post.
Because the need for a feeding tube comes most often when someone can’t eat. When a fat person can’t eat, that is as dangerous as when a thin person can’t eat. You don’t wait for all the weight to drop off before you decide that this whole not eating thing is a medical emergency. And this is why plenty of fat people have feeding tubes.
We may have feeding tubes because we can’t swallow. We may have feeding tubes because we choke on our food. We may have feeding tubes to bypass a stomach that doesn’t work. We may have feeding tubes to drain stomach fluids that would otherwise fill up our lungs and kill us. We may have feeding tubes because our esophagus doesn’t work. We may have feeding tubes for every reason that anyone else needs a feeding tube, and none of those things are changed by the fact that a person is fat. All of these things are just as serious problems in a fat person as in a thin person.
I honestly think that some of the nonsense I hear about fat people and feeding tubes is because in the online world, feeding tubes have become a symbol of anorexia, a condition that is (erroneously) associated in most people’s minds with only super-thin people. Feeding tubes are what happens when someone with anorexia can’t eat enough on their own to maintain an even vaguely healthy weight. You see pictures of people with feeding tubes all over anorexia websites, and chances are that if you see pictures of people with feeding tubes, you’re seeing pictures of extremely thin people.
But being severely underweight (for whatever reason) is only one among dozens of reasons a person might need a feeding tube. And most of those dozens of reasons do not have a weight limit. So please don’t bully and harass fat people for having feeding tubes. And if you see someone you know doing the bullying and harassing, set the record straight. Honestly, the fact that I have a feeding tube at all shows I need one, because they don’t implant GJ tubes without a damn good reason. And the same is true for anyone else with a G tube, J tube, or GJ tube. These are serious surgical procedures that are never undertaken lightly.
As for the bullies, I hope I never have to live in a world where they run my medical care. I can just see them “You lost 70 pounds rapidly without trying? Come back when you’ve lost 70 more and maybe then we’ll help you, if you don’t die first!” It’s ludicrous. And deadly. All of these attitudes contribute to the deaths of fat people with genuine health problems. And that’s why, instead of blowing it off like usual, I decided to make an entire post on the topic of fat, feeding tubes, and gastroparesis.
A warning: I won’t be accepting comments that are nasty towards fat people or that support the idea that our health problems aren’t as serious. Nor am I going to be accepting comments to the effect of “go on a diet, it will solve everything”. Nor will I accept comments from bullies. This is about discrimination against fat people both in the healthcare industry and in broader society, and this is all this is about. Anything else will be deleted. Even when it comes under a cloak of “But I’m only so concernnnned about your healllllllth…” This isn’t the time or the place for that crap, please respect that. This is a post about why these bullies’ attitudes are potentially deadly to fat people, and I won’t have it pulled off course into a million unrelated debates.
P.S. Bullying fat people about medical stuff like this, and deliberately spreading misinformation about the medical needs of fat people, kills fat people. Every one of you who targets me in this way has to know that in your heart. Have that on your conscience, if you have enough of one to bleed through all your cruelty. When it’s your turn to face yourself for who you are, you’ll have to answer for things like that. I hope you can manage.
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.
The following stuff is important stuff I wrote elsewhere on the net. If some of what I'm saying doesn't make sense, ignore it, it's just context that I'm not able to describe right now. The main thrust of what I'm saying should make sense without understanding the full context of what I wrote. And I can't rewrite it all right now for this blog. So the following is pretty much as I wrote it. Also sorry for all caps in places, it was because where I was writing it I couldn't use other forms of emphasis. And please don't assume that this is all about autism. Everyone always assumes that everything I say is all about autism. It isn't. Most of it isn't. Not even the stuff that talks about autism is all about autism. I am fed up with just about every such assumption because my world isn't made up of only or mainly autistic people and when I talk about things I always get replies saying “This applies to people without autism too” and I want to say “no shit Sherlock, that's what I meant in the firs
This turned into a long post, and it may not apply to the people I’m replying too, but this conversation just brought up a lot of things I’ve been thinking but having trouble saying.
Thank you for writing that. It’s really important.
Also another point I want to make. There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. Some of us this is true of, can communicate well by speech or typing also. Some of us can’t. But we usually have trouble with receptive language — either some of the time, all of the time, or especially, during the early formative years of our lives. I’m one such person.
Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at. Also, most autistic people who can talk about their experiences in words, are (or believe themselves to be) bad at nonverbal communication, and their experiences get seen as applying to all of us, when this is not true.
So for many of us — nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. I wrote about one such group of autistic people in my contribution (“Untitled”) to the Loud Hands anthology. Because I want people to know we exist. Because I want other people like me to know they aren’t alone, in an autistic community made up mostly of people who experience themselves as terrible at nonverbal communication. Where people even say that autistic communities are communities where people can use text or other forms of language, rather than having to deal with nonverbal communication. Even though there’s plenty of us who do better in person, BECAUSE we communicate best nonverbally, because words, whether we can do them or not, whether we are or seem good at them or not, are so hard and so difficult and so painful to keep using.
There are entire groups of autistic people out there who communicate with each other using our own unique forms of body language that are different from nonautistic body language, different from other autistic people’s body language, specific to ourselves, specific to each other. Who communicate best reading each others writing, looking for the patterns that exist between the words, rather than inside the words themselves. Who communicate best by exchanging objects, by arranging objects and other things around ourselves in ways that each other can read easier than we can read any form of words. Who share the most intimate forms of communication, outside of words, outside of anything that can be described easily, in between everything, seeing each other to the core of our awareness. Who see layers upon layers of meaning outside of any form of words.
In “Untitled” I was writing about my favorite communication ever, my video chats with AnneC (and her cats, when they show up, which Shadow absolutely loves communicating with me over video and reminds her every Friday at the right time because he loves it so much). I don’t necessarily do the best at visual stuff the way most people think of it. But I can see the patterns of movement in other people, including cats, whether or not I see them well in the usual forms of visual perception. And those patterns of movement tell me more than any word ever could.
I can even read nonautistic people fairly well at times — just not in the ways nonautistic people read each other well. That’s one of the problems with nonautistic research into autistic people’s abilities to understand nonverbal communication. Most of it relies on the understanding and use of words at the same time as understanding the nonverbal communication. And most of it relies on the kinds of nonverbal communication that nonautistic people are most aware of. This frustrates me to no end — how can people research forms of understanding that they don’t themselves have and therefore they don’t themselves understand even exists? I’ve actually told researchers ways they can research autistic people’s understanding of nonverbal communication without having to resort to the faulty methods they usually use.
And one researcher told me, when I asked, that every parent of an autistic child she ever met said that their child picked up easily on things like stress in the household, but that SHE ACTUALLY DISREGARDED IT UNTIL I ASKED HER, BECAUSE SHE’D BEEN TAUGHT THAT AUTISTIC PEOPLE COULDN’T READ BODY LANGUAGE. I’m totally serious. If researchers are that biased themselves, how can they possibly hope to even notice that we can understand things they assume we don’t understand?! I taught that researcher a bunch of very simple ways to test that without relying on the painfully stupid research methods that guarantee researchers will find only what they expect to find — relying on us to use and understand words, relying on our understanding of actors and stage conventions rather than real people’s real nonverbal communication, relying on nonautistic people’s limited ability to read autistic body language, all sorts of other flaws that seem obvious but that researchers themselves seem never to notice. So hopefully she will set up some real experiments that show our real abilities.
Anyway. Back to what I was saying. There’s entire subgroups of autistic people out there _ not just my own — who rely on nonverbal means of understanding the world, and nonverbal means of communication. That’s one reason I usually put myself in my videos — because I know that certain other autistic people will be able to read me like a book, even if nonautistic people usually can’t. And that nonverbal communication is a crucial part of my videos. (See why the entire first half of “In My Language” has no words in it. I was trying to make a point about the best way I communicate, the best way many people communicate, autistic or not, verbal or not. Mostly lost on people, who think it’s a video about autism. It’s not. It’s a video about communication and understanding and personhood, that happens to be made by an autistic person. Big difference. I told CNN why I really made the video, and they left out that part of the interview in favor of putting their words in my mouth. I think my real intent was too political for them.)
Anyway. I may be a writer, but my real best form of communication has nothing to do with words. I use words because I have to. Because most people won’t understand me if I don’t. I don’t use them because I like them, or because I “can’t do nonverbal communication so text is best for me”, or any of the usual reasons most people assume. If I could never use language again, spoken or written, I would be really happy. But the world won’t let me do that, so I carry on using a means of communication that is outright painful for me.
I don’t know the people in the video, but I know that the way their bodies move makes intuitive sense to me and communicates things whether they intend it to be so or not. (The forms of nonverbal communication I understand best are unintentional, in fact. That’s one reason tests using actors don’t work on me. I know an autistic woman who failed a test of nonverbal communication because it used actors and she kept describing their real feelings instead of their acted ones. What this says about nonautistic people’s understanding of nonverbal communication is… interesting.) Whether they are able to use spoken language or not, the video would lose a lot if it only relied on showing them speaking or typing the words.
And I really dislike a lot of the self-advocacy movement for relying mostly on the self-advocacy that happens through words, written or spoken. This leaves out people who can’t do either but who are nonetheless quite capable of advocating for themselves through their actions and movements. If I hadn’t spent a lot of my life forcing myself to do words, I might be such a person, so I am always aware of this. Words are not natural to me the way they are to some autistic people. They’re difficult and my development could have gone either way. There are also people who, no matter how much effort they put in, could never have used or understood words, and they are also extremely important, and they are also capable of self-advocacy, and they are still capable of communication that is more full of meaning than the communication of many people who use words.
I wish there were videos using their communication — which by definition wouldn’t involve words. Both people who would have been able to use words had they put in a crapload of effort at critical times in their development, and people who would never be able to use them no matter what. Such people exist. I sometimes wonder if they are too inconvenient for some autistic people to remember. I hate when people tell parents, “If you just gave your child a communication device they would be able to type words (or use picture symbols) and everything would be solved.” You don’t know that. You just can’t possibly know that. I hear that a lot, this idea that autistic people would all be able to communicate in words if only they were given a means to type them instead of speak them. And it’s so not true that its utterly ridiculous. I hear it both from people whose main way of communicating is speech, and also from people who use typing, and people who use both. It’s wishful thinking and it’s not true. There are people whose understanding of the world is just like a typical “aspie” except they couldn’t speak for motor reasons, and they are the most likely of those who use typing, to believe this myth.
Reality is that there are lots of people who will either never be able to use words, never be able to understand words, or both. Or whose use or understanding is so limited that they will never be able to use words as their primary means of communication. But they do communicate, whether the communication is intentional or not. And they do matter. And they are capable of self-advocacy. And they should be included in self-advocacy movements if those movements ever expect to represent autistic people, developmentally disabled people, cognitively disabled people, disabled people in general, whatever group is trying to represent itself in that movement. And in order to include them, you have to show their movements and their sounds and all the things they do that aren’t words.
It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language. (And surprise, that’s one thing that “In My Language” was actually about. And it would be about that whether I used typing or speech to communicate — either one would be my “second language”, and as such I can easily, easily envision a situation where I never learned and never would learn to use speech or typing, both of which I used at different points in my life.) And each person has one. Sometimes several people have a language that is in common but is not words. Sometimes each one has a separate way of communicating that is not words. But either way, you have to learn how they communicate, not force them to either communicate how you best communicate, or else be considered “non-communicative” for the rest of their life. And yes it’s possible to get consent to use their communication, it’s just sometimes harder work than asking a yes or no question in words.
And a community that doesn’t include such people isn’t my community. The developmental disability community is far better at including such people than the autistic community is, even though not all of the DD community manages it either. One reason I’ve spent a lot of time communicating with people who can’t use words in any form is because I’ve been in the developmental disability system for pretty much my entire adult life and have spent a lot of time with a wide variety of people. And I’ve spent a lot of time communicating with people who can’t and may never use speech or typing or even picture boards. And that’s something that certain segments of the autistic community are sorely missing. Even parts of the autistic community that involve people who don’t use speech, are often made up of only those people who were able to learn typing, and often put forth the (false) idea that everyone could learn typing if only they tried hard enough or were exposed to the proper teaching methods.
The response someone made is true: Some of the people in the video use typing, so they could never be shown speaking the words in the video. But I’d like to go further than people who use speech and people who use typing, because unlike a lot of people, my social world is made up of a lot of people who can’t do either one. And also made up of a lot of people who, even if they can use speech, typing, or both, those are not their best means of communication, and it would be better to show us using our best means of communication rather than merely the form of using words. Not everyone has words but everyone has a voice and a means of communicating. And not everyone who uses words sees words as their primary voice or their primary means of understanding things, and that needs to be respected. And I’m sick to death of spending time in communities where most people seem to miss these facts, and automatically see having a voice as the same as using speech or at least using language.
That's a sentence I've heard a lot. And when they don't say exactly that, they say things that mean the same thing. Usually in the developmental disability system, for some reason, although I can easily imagine it in other contexts.
What it really means:
“DD people aren't like regular people. When people do things to them that would be horrible if they happened to other people, there's always a logical reason that justifies whatever is happening. Staff and case managers rarely if ever abuse power. All of their decisions have the best interests of clients at heart. So if something looks terrible, chances are that there's a reasonable explanation behind it. I just don't know what that explanation is. And I likely never will, so I'm not going to judge.”
They say this when staff scream at an old woman with an unsteady gait every time she falls, and refuse to help her get back up or allow her to hold onto things for balance.
They say this when staff publicly humiliate a man who clearly has trouble moving to avoid obstacles, when he accidentally bumps into someone.
They say this when staff do their best to keep a boyfriend and girlfriend apart. Or when staff are okay with boyfriend and girlfriend, but balk at the idea that two women with intellectual disabilities have fallen in love. As if it's even their job to decide who can love who.
They say this when parents simultaneously put on a big public show of wishing their son could move out on his own like he wants to, but sabotage his every attempt to do so. Because they had planned out a whole life for him in the group home they run, and can't handle the idea that he doesn't want to live under their control the rest of his life.
They say this when a staff person kisses a grown man's leg and says “I kiss you boo boo aww betta!” in baby talk.
They say this when, in the name of integration, staff prohibit disabled people from speaking or socializing with each other. I just saw an instance of that last one, which is why I finally remembered to write a post on the matter.
They say this when we get outright tortured. Tied down. Skin shocked. Slapped. Pinched. Made to smell ammonia.
I wish I could upload the scenes from real life that play out vividly in my head. But like as not, people likely to say these things wouldn't consider me a reliable observer. They never do, when you start pointing out the truth. When you see yourselves as people. With all that this means.
Suddenly you are either too severely disabled to understand what's happening, or you're not disabled enough to grasp why treating people like dirt is necessary. Or both at once. And they'd much rather you were highly submissive, maybe even the really cool type of client who helps staff out by giving them information about other clients.
All of this requires seeing DD people as less than. It just has to. There is no other way to justify these actions towards us.
And I know how people see us. As in, I know what we look like inside their minds. Sometimes we're human — almost, anyway. Not quite. There's something vitally important inside every real human. And to them, we either don't have it, or are missing large chunks of it. So we go around in human bodies but there's pieces missing in our minds and our souls. Even people who don't believe in souls in any religious sense, still perceive something inside us as only partial.
I know this because this is one of those viewpoints that isn't content to stay in the minds of others. It tries to force its way as deeply into us as it can manage. Until many of us look in the mirror and see only part of a person.
I can't describe the violence that involves. It's horrible. And a whole system of relating to us, forces its way into our lives. It tells us that we are taken care of, that we can relax, go to sleep, almost. And then it suffocates from inside. There's no words for it.
I suspect the drive to say this about people comes from several places at once.
If you work in the system, there's not wanting to see yourself or your coworkers or people who could be you, doing something horribly wrong. Much less on a regular basis.
I also suspect a strong desire to trust the society they live in, not to do horrible things to people. Or at least, not to do horrible things to certain kinds of people.
A member of my family once told me that it took him a long time to believe what happened to me in mental institutions. He said that in order to come to terms with the reality of the abuse, he had to destroy a strong desire to believe that the society he lived in was safe and just. Him telling me that was far more honest than a lot of people are.
That desire to trust society gets in the way of understanding every kind of injustice. I am amazed that people trust a society that does its best to shut out and destroy all but a handful of people. But they do.
And not seeing us as quite exactly people, is the one thing that you can't avoid if you think like this. Because if you see us as people, you have to see what happens to us as dreadful. And you don't immediately, upon being told of the latest awful thing, say any variant on “I don't know that person's program.”
Many years ago, meetings with my case manager tended to involve shouting and cussing. Mainly on my end. Today, our biggest problem during meetings is whether I'm physically and cognitively capable of holding a serious conversation at that time during the day. I would love to take credit for this by saying I learned a lot of self-control between then and now. But I suspect that even if I have, that's not what really changed things.
Like a lot of cognitively disabled people, I am not capable of keeping track of the dozens of things that have to happen for my basic needs to be met. And I really mean basic: Food, water, clothing, bills, hygiene, shopping, and medical care. Unlike a lot of states, the DD agency here only serves cognitively disabled people — you have to have an intellectual disability or autism, cerebral palsy doesn't count. So you would think they'd require case managers to be organized enough to meet those needs. You would think, but you would think wrong.
My case manager back then was a nice enough guy on a purely social level, but he was not an organized person. At all. So he was able to do a few things, but other than that he gave staff very little direction on how to consistently do what I needed. Meanwhile I was unable to even know most of what needed to happen. So stuff. Very necessary stuff. Lots of it. Wasn't getting done.
This meant that I pretty much lived from crisis to crisis, discovering a different gaping hole in my care each week. My case manager, having lots of power and being unwilling to face his role in these matters, kept telling me that these things were not his problem.
The more time went on, the worse things got, and the less he was willing to take responsibility for what was happening. So he blamed me. Nobody could possibly keep track of this many medical problems and appointments at once. I was unreasonable to expect basic care. There was no possible way to meet the needs of someone like me. I was the problem.
I kind of wanted to survive. So the more time went on, the more often I chewed him out for not doing his job. And the more frustrated I got, the more he treated me as if I was the one doing something wrong. Because hurting his feelings was worse than him forcing me to live in perpetual crisis mode. And it was perfectly reasonable to simply deny I had needs rather than work to meet them, right?
Towards the end, he began to get snippy and snarky. If I brought up anything he wasn't doing, he'd get this twisted smile in his voice and say, “Well maybe your new case manager will be able to do this.” Even I could pick up the implied meaning: that it was unreasonable and demanding of me to expect anyone to do these things, and I would soon find this out when I got a new case manager who would be just as incapable of keeping track of these things as he was. Then I would be forced to admit how impossible it was to meet my needs.
Except it didn't work out like that. At all.
My new case manager was a young woman. She was organized and efficient. And within a month or so, she completely turned my life around. I could finally rest, because I no longer had to keep a constant lookout for things going wrong.
And my reputation changed. Suddenly they considered me reasonable, polite, and civil. They acted as if I was the one who had changed. But I wasn't. What changed was my situation. It's hard to be nice — hell, literally fatal to be nice — when it's your life on the line, when there's a different crisis or three every week.
Yet that's exactly the position a lot of agencies force disabled people into. They don't provide adequate case management, and the outcome becomes our fault. We are forced to fight for basic necessities. When we do fight, they take that as evidence that we are capable of keeping track of our own needs without any extra assistance. We become not their problem.
From what I've seen, a lot of disabled people die this way. With help from friends, I've been able to catch situations like that. But not all the time, and not before the situation becomes dire. The amount of emergency room visits I used to have due to dehydration alone is astonishing compared to what I have today. It used to be routine for me to get fluids in an IV on a regular basis, because nobody was helping me drink water or Gatorade.
So the situation becomes this: If we don't speak up, they presume everything is okay, because if it weren't, someone would say something, right? If we do speak up, they presume everything is okay, because speaking up proves we are competent to track these things and direct support staff on our own. Plus,if we spoke up in one instance, then our failure (inability) to speak up in other instances means nothing's really wrong, because if it were, we'd say something. “You're such a good self-advocate,” they say, when they really mean “If there was another problem, you'd say it.” If we routinely end up in severe medical trouble, that's only to be expected given how many medical problems people like us have.
Needless to say, my being alive at the moment owes a lot to coincidence.
They also take signs of desperation as just happening, with no context attached. So our justified terror and anger become behavior problems, or psychiatric disorders. Or it's just part of who we are to be demanding or nasty. I'm still not certain my agency perceives the change in my behavior as a response to a change in context. They probably think I mysteriously learned self-control, or finally matured past being demanding.
No. My needs got met. That's a huge difference between that, and some kind of change on my part. If they went back to screwing me over and blaming me for the consequences, I'd probably go back to yelling at them.
That instinct was back again this week. I’m pretty sure I’ve written of it before. Despite terrible conscious body awareness, this instinct has popped up to save me more than once. It tells me “There’s something wrong with your body. If you don’t find a way to detect and treat it, you could die or end up in the hospital.” It sounds ominous but it’s not a panicked “OMG I’m going to die AAAAAAACK!!!!”, it’s more like a calm but firm realization.
In the past, it has warned me of things like organ failure, untreated bronchiectasis (treated it’s only a little more dangerous than asthma, untreated it can kill you), and the beginnings of going septic. And this week it popped up two or three times (seemed like twice, but the first time it happened it seemed to be warning me about two separate things).
The first time it popped up recently, I was away at a recreational program. It told me to go home, not even to wait a day, just go home now. The warning seemed to be twofold: Something was going wrong with my lungs, and my body was so out of energy (from being pushed by others, but that’s another story) that I was experiencing symptoms I haven’t experienced since my last major health crash. Between the weakness and the coughing up disgusting colors of phlegm, this seemed pretty obvious, but the warning gave me the extra urgency not to wait overnight.
So I got some antibiotics ordered and went home. By the next day, my brain was actively checking out. By checking out I mean, being technically awake but not conscious of anything, or being aware only of these weird series of images that went by. It had a feel similar to past experiences of delirium, rather than shutdown or something, and during periods of better awareness I became very glad this was happening only in a familiar place among familiar people. And I was able to begin the resting that I badly needed in order to get through this in one piece.
I began to feel a little better the next day. But then, abruptly, things became far worse. I couldn’t get to the bathroom and back without falling or coming close. I sometimes felt like I was going to pass out. And I couldn’t get near food or water. I couldn’t put words to why, I would just try to drink and my head would turn away. And I felt generally cruddy and woozy. And most disturbingly, the instinct was back. It said “There’s something else wrong and this time it’s not your lungs or sinuses but I can’t tell you what it is.” Grrrrrrrr.
I told all this to someone who persuaded me to go to the ER. (Note: I nearly always have to be persuaded. A good friend describes my attitude to that place as “If Amanda got her leg lopped off, she’d be insisting she could bandage it herself rather than go there.” I’ve just got friends who refuse to give in if I say I don’t want to go there. And mostly I’m glad despite my loathing of the place.) The reasoning was that the lack of water alone would make it harder to cough things up, and bronchiectasis makes that hard enough already, and that could spiral downward fast. Plus it wouldn’t be good to pass out alone in my apartment.
Once I got there, the events unfolded in a very strange way. Normally they’ll give me IV fluids for practically no reason at all, but this time (when I was actively saying I was unable to drink) they insisted on testing my urine for dehydration. I was having too much trouble holding onto language to explain a lot of things so someone was with me explaining them. They kept demanding to know why I couldn’t drink, and the person kept telling them that autistic people can have so much trouble describing subjective experiences, that sometimes “I can’t do _____ and I don’t know why” is all you can get, and that you have to really dig and do a lot of tests if you want to find the reason, rather than acting like nothing is wrong because the person can’t name it. I was treated radically differently from my roommate, who was treated with the utmost respect. (This is common for DD people in general, including autistic people.) They even tried to get me to drink water, which is weird as usually when I’ve been given IV fluids I’ve been perfectly capable of drinking but they’d never given me water in a cup. And all I could do was wet my tongue a little and then my head turned away.
Nearly eight hours later, they came back with a way more respectful attitude to me. Why? The urine test just happened to pick up on the fact that I had a UTI. And they now thought that between a urinary tract infection, sinus infection, and lung infection, I might just have a reason to have no appetite. So they then proceeded to give me two bags of IV fluids and a prescription for yet more antibiotics before letting me go.
What scares me is what would have happened if they hadn’t detected the UTI. It’s not like they were even bothering to look for an infection. The information just popped up when they were testing for something else. And while I could tell the problem was somewhere in my torso, that’s a huge area of the body to look through for symptoms. Nothing pointed me in the direction that a UTI would have been in. And this physician’s assistant was not doing what you should do with a sick autistic person (check for all common things that could cause the symptoms). In fact, since my way of communicating my loss of appetite was so unusual, she wasn’t even treating it as a loss of appetite but rather a matter of willpower or not wanting to drink.
But somehow despite all that I’m on all the antibiotics I seem to need to be on, and seem to have found all the infections that were setting off my “get treated or you may not survive or at least may end up in the hospital” instincts. I’m just glad those instincts are there, or I would have delayed if not avoided altogether, getting everything diagnosed and treated. I certainly wouldn’t have known anything but the lung/sinus infections was causing all the new symptoms. It’s odd to have a body that won’t tell me basic information half the time, but will tell me “You’re in danger, get help NOW.” I wish that simply communicating this instinct to a doctor would result in getting tested for whatever things seemed likely. I think I could do that with my GP, but not with some of the random people you get in the ER. And trying to negotiate all this while disoriented and confused is just… gah, I’m glad it somehow worked out because I honestly don’t understand how, especially given I wasn’t “all there” during times I needed to be communicating clearly.
By this point I’m pretty wiped out and still having appetite problems, but I’m feeling a lot better. I don’t need my bipap while awake anymore, I can get around a little using my old crutches for stability, and my brain is no longer randomly checking out, nor do I feel like any moment my surroundings will burst into a Disney Acid Sequence (warning: the link is to TV Tropes and may suck you in and spit you out twelve hours later). And I’m hoping we caught everything the instinct was talking about.
I suppose the question in this post is for anyone who’s faced discrimination for what sort of person they are, or watched others (such as their children or clients, given that I know a lot of parents and professionals read this blog) face discrimination for the same.
When did it hit you that this (an actual pattern of discrimination, etc.) is what it was? As in (any combination of the following, or anything that seems related that I’ve forgotten to add, and switch the questions around to be about another person if you’re not thinking of yourself here)…
…that it wasn’t a bunch of isolated incidents of injustice or unpleasantness?
…that it wasn’t your fault, or something to do with you alone?
…that there was actually a pattern to this?
…that it was actually real, and not imaginary or in your head?
And what thing(s) made you realize this? (Which could be sudden or gradual or combinations of both, or anything else.)
I’ll answer this as well:
For my part, it’s hard to say exactly what all the little pieces were that I started with. I knew certain things were wrong, or that they ought not to happen. And then I gradually got used to them happening, and happening to me, as something inevitable. But I’m very certain of the two things that made it stand out to me.
The first was that as I gained more precise communication, and was finally able to put huge amounts of my actual thoughts together into words on a regular basis, and really have that be a more or less stable ability, and also gained a lot more self-awareness, and a lot of other things… it still happened. People still treated me badly. I had decided at some point in the past that the only reason people treated me badly was either because I was having a hard time communicating (at best), or I was, in my efforts to figure out what exactly I ought to say, communicating things that were untrue (at worst). I thought that if I were able to say exactly what was truly inside my head, things would be better. And they weren’t. It had been something I experienced as a drastic change, but some other people didn’t, or didn’t see it as enough of a change, and some even (to my immense surprise and disturbedness) told me that they liked me better before. (As in, back when whether what I said bore any resemblance to my thoughts was random and barely if at all under my control. To hear that they liked me better like that was a massive shock.)
The second thing had to do with people I looked up to a good deal. At the time this realization was going on, the people that come to mind are Jim Sinclair, Cal Montgomery, and Laura Tisoncik. I had varying degrees of actual communication with them (and varying degrees of conflict, for that matter), but they were all people who impressed me with assorted combinations of integrity, clarity, honesty, and wisdom, and who had a lot of influence on my understanding of things like disability politics.
So here were these people I thought of as some combination (different for each) of strong, clear, wise, competent, of good character, and all these assorted positive things that I did not at the time believe possible for myself even though some of them kept telling me they were possible for anyone.
And then I saw them talk about getting all the same sort of discriminatory bullcrap that I got all the time. And I saw them talk about being treated as inferior, worthless, pointless, empty, stupid, dead, and whatever other ugly stereotypes can be conjured up.
And that’s what it finally took for me to put it together, that when I was treated that way, it wasn’t because of something I did wrong. That I’d be treated that way even if I wasn’t the colossal screwup I believed myself to be. (And that maybe, possibly, I wasn’t so much of that as I’d thought.) I somewhere along the line had internalized the view that all these things happened to me because I must be inferior, worthless, pointless, empty, stupid, and dead, not to mention a whole lot of other things.
So it was the combination of changing a great deal internally but still meeting with the same old crap all over again, and watching people I admired for all sorts of traits I didn’t think I had, getting treated the same way. And that’s what made me grasp that something was going on beyond just me being a failure and getting what I deserved. Like so many such realizations, in hindsight I had all the pieces of it, but I hadn’t put them together yet, or if I had they hadn’t come together in any permanent fashion. And those two things were what it took for me to finally get it.
By the way, Dave Hingsburger wrote a way more intense version of assorted political realizations around disability, called Mourning Has Broken. When you follow that link, be aware that there’s one word written as “chickens…” that makes no sense unless you know those dots are in there to blot out “chickenshit”, and the sentence makes absolutely no sense without knowing that. This was written when he was a non-disabled staff person. (He’s now a disabled staff person. And a prolific blogger, who blogs here.)
I think I first read that article in an issue of Mouth Magazine called Waking Up. And I guess “waking up” is exactly the sort of experience I’m asking about in this post, because I’m curious how, when, and whether it has happened for other people. (And it doesn’t have to be specifically about ableism, either, just anything similar. Nor does it have to be specifically about the exact questions I asked, just anything similar there too. I’m not at all able to cover all possible bases so please fill in the blanks — or not — as you see fit.)
Edited to add: Please go to Bev’s blog if you want more information on how to try to get them to put a stop to this crap.
PORT ST. LUCIE — Melissa Barton said she is considering legal action after her son’s kindergarten teacher led his classmates to vote him out of class.
After each classmate was allowed to say what they didn’t like about Barton’s 5-year-old son, Alex, his Morningside Elementary teacher said they were going to take a vote, Barton said.
By a 14 to 2 margin, the class voted him out of the class.
Barton said her son is in the process of being diagnosed with Aspberger’s, a type of high-functioning autism. Alex began the testing process in February for an official diagnosis under the suggestion of Morningside Principal Marsha Cully.
This reminds me forcefully of a warning that Laura Hershey gave a long time ago in her “Crip Commentary” web column, after viewing the series “Survivor” on television.
In the midst of these escalating social conflicts, there now appears a game show — mere harmless entertainment. It’s fun, gossipy — so we don’t question its underlying principles. But the rules of this “game” seem designed not just to reward the winners — that’s an expected part of any game — but especially to punish the losers.
Somehow, I realized, this game seemed eerily familiar to me. I remember exercises I participated in during adolescence — several times at church youth camp, once in a high school class — called “values clarification.” This involved a group discussion about making difficult choices in some hypothetical adverse situation. As I recall, these exercises were supposedly intended to help us understand our own beliefs. That sounds benign, even enlightened. But in reality, I remember I often felt deeply troubled not only by the outcomes of these discussions, but also by their instigation.
A typical example: My peers and I were told to imagine being stranded on a lifeboat, along with an assortment of strangers and a dwindling supply of food and water. Our companions on the boat included a young pregnant woman, a surgeon, an unemployed drifter, an elderly man, a Boy Scout, a woman with cancer, and so on. The setting and the cast of characters varied, but the basic idea was that some people would make it, and some people wouldn’t — and that it was up to us to decide, based on what we thought of the relative value of each fictitious person.
I never had much to say during these discussions. When they were over, I often had a queasy feeling that stayed with me for several days. I never fully understood why, until much later, as an adult. I gradually came to understand that these so-called “values clarification” exercises were based on a preordained set of values, which I could not accept. The games assumed that there weren’t enough resources to go around; and that some people have more value, more right to live and to consume resources, than others do.
I remember the same queasy feeling when watching the show “The Weakest Link” — which functions like an ultra-crisp, ultra-efficient version of “Survivor”. People are voted off each round, and when they are they are told, “You are the weakest link — goodbye.” It’s like a distilled essence of social darwinism. And people seem to love it.
And people seem to learn it practically from the cradle, unless it’s just some kind of awful misguided instinct. The following will be familiar to nearly any autistic person who wasn’t extremely lucky. I’m only picking from my life because it’s easier to remember my own observations than someone else’s.
I can remember being near the age this kid was, and walking onto a playground at school. There seemed to be a lot of fascinating things to climb, so I tried. And was promptly grabbed from all sides and shoved off the structure, to repeated cries of “Amanda’s on the ship!” If I by chance (because I don’t know how else it would’ve happened at the time) drifted into one of the lines that the other girls were always forming — “Anyone who wants to play My Little Ponies, line up!” and so forth — I heard an emphatic and smug “You can’t play”. And I also remember the first kid among this same group of kids who seemed to be nice to me — who was then marched in front of me by another kid and told to repeat, “I don’t like you” to me. She did. That was the end of that. If the words to any of these things were a mystery to me (and all but a tiny number were), the tone of nastiness and exclusion was unmistakable and it happened without fail when I ended up in the path of groups of kids.
And I remember as well that when I was bullied so mercilessly — at an age where I understood far better what was happening — that I was afraid to go to school and lashed out defensively at nearly anyone who tried to interact with me at all, I was the one who got counseling, and I was the one who was talked about by teachers as if there was something wrong with me. And I was the one who had to repeat a grade and change schools. The bullies were left to go on doing their thing, because it was only natural to be nasty and cruel, but wholly unnatural to be terrified of people who acted in this manner. I’m not saying I never did anything wrong, nor that I treated everyone with absolute kindness. Not even close, and I imagine at times I was a nightmare to deal with in my own right. But good grief.
I also remember thinking that I’d finally escaped all that, in my ill-fated attempt at high school. Even years later, I thought that while people had certainly said nasty things to me, I’d gotten off light. Then as an adult I got in touch with James, who’d been one of the kids who was more likely to hang around with me at the time, and who apparently got his own share of grief for even doing that. He told me that he’d been bullied pretty badly in junior high, but that he hadn’t seen much like what I got in high school, including the fact that even some of the teachers were in on it.
(And yes, teachers were in on some of this stuff throughout school. In one memorable instance a teacher who frequently found new and creative ways to humiliate me so the other kids would laugh, actually wrote home to my parents about my great “sense of humor” — which seemed to actually mean, that he enjoyed laughing and getting others to laugh at my expense. Others, like a particular gym teacher, were more into physical rather than emotional violence. Some teachers were okay, but some of them seemed outright sadistic. A shocking number of autistic people I know, me included, have had teachers or other authority figures ask everyone in the room to tell us everything they hate about us.)
I’m not telling this story to make you feel bad for me as a person. I’m telling it because assorted variants on these experiences are so close to universal among the autistic people I’ve known. How can you get a good idea of the social abilities or emotional range of a set of people who are treated like this from the moment we encounter other children, sometimes from the moment we encounter other people at all?
I still want to know this.
I also want to know what on earth it means that it’s considered “good social skills” to learn to be one of the people that excludes. And autistic and non-autistic people alike can eventually learn to be that, even if we weren’t much like that to begin with. I’m not trying to say we can’t, I’m not going to pretend not to notice what happens to autistic people who gain the power to become exclusive. But it’s sheer ugliness that these horrible things are treated as normal, and being the target of them makes you seen as somehow worse than the people doing the targeting. And the people doing the targeting are seen as the ones to emulate, it seems like.
It was also an ugly truth to realize that while some people grow out of it, many people who begin as bullies grow up to remain bullies. I fully realized that when a parent of an autistic kid called my friend a “retard” when he was mad at her, then later went on to say that he always tells his son to quit acting like a “retard”. I imagine that if he’d gone to school with me or my friend he’d have done worse than name-calling. (This is also reason #4285 why I don’t believe that “special children are given to special parents” nonsense.) It wasn’t the first time I’d seen an adult be hateful by any means, but it was the first time I connected the adults to the children in my head.
Daniel Mont wrote a book, A Different Kind of Boy. It was about his autistic son Alex. Daniel wanted to put Alex in a gifted program, because Alex was ahead in many areas and he read literature suggesting that Alex’s social and perceptual differences might actually be partly the consequence of intellectual differences. There’s an entire chapter on it that everyone should read. Alex took an IQ test and met all the requirements for the program. Then he went to one meeting of it. The other children, who were regarded as perfect and exquisitely sensitive, decided, apparently, that they didn’t want Alex around. The parents backed them up completely:
“You mean, you’re not letting Alex join?” I was incredulous. “He passed your IQ test.”
“Yes, but the other children feel he really isn’t one of them. Do you konw what I mean? I’m sure there are other programs he can sign up for. We’re sorry, we feel bad because you and Nanette were so nice.”
“Well, what did he do?” I fought to restrain my anger.
“I’m sorry, Mr. Mont. Our decision is final. We really have to trust our children on this.”
I hung up the phone. I was furious. Absolutely furious. What kind of monsters were these people raising, anyway? “They are not like us. We can tell if he belongs.”
And at that point he realized the elitism that runs through most such programs (all that I’ve seen anyway, and not just intellectual elitism either — the gifted programs I was a part of were mostly populated by middle-class or wealthy white kids, most of whom wouldn’t have been put there were we anything else), and the disturbing nature of the assumption that the children were the ones best able to make the decisions in this matter.
I have read in the past about schools in some places — most American schools are not like this — where children work together to solve problems, and where the kids who learn faster in any particular area, instead of being separated out and told they’re special and above everyone else, end up being taught to use their talents to cooperate with the other children. “Winning” or “getting ahead” isn’t the goal there — and all the children tend to learn more than they do in the more cut-throat style of schools. If schools have to exist that sounds like a much better set of principles to run them on.
As I mentioned in my other post — my brother was, as he describes it, the “town scapegoat” in the small town I was born in. People sometimes think he’s exaggerating to say that everyone hated him there, just like they sometimes say my friend Joel and I exaggerate when we say teachers joined in with some of the other kids’ bullying towards us. From what our parents say, if he’s exaggerating it’s not by much.
I don’t think we are. But I think that we are, like many other disabled people, subject to widespread hate. And that the hate often wears a lot of other masks — but is, basically, hate, in all its guises.
And hate in some of its most raw guises is what autistic people encounter in kindergarten.
If schools are going to exist and teachers are going to teach in them (and I’m not a big fan of schools, but I know to say they’re widespread is an understatement), they ought to discourage hate and exclusion. As should parents.
They ought not to join in.
And they sure as hell ought not to outright invite it and celebrate it the way this teacher has.
If this were the way things were done, then anyone who was the wrong kind of “different” of the day — autistic or non-autistic — would be voted out of every kindergarten where prejudice against people like us existed. I would’ve been “voted out” in preschool, and the kids were doing their darnedest to try even without a teacher’s encouragement.
Children aren’t born knowing how to behave towards other children. None of them are, autistic or non-autistic. They have to learn that everyone’s dependent on everyone else, that people aren’t better than others just by being better at something, and that tendencies to do bad things to other people are things we all have to fight, not give in to, if we want society to be remotely just to anyone.
And this teacher is leading these kids in the wrong direction to learn any of those lessons.
This is my post for Blogging Against Disablism Day. You’ll have to wait on the poems/other writing, because I have to write this instead. I’m having trouble reading, so I am afraid this might be sloppy. And it is very long, getting into pretty high levels of detail on some things. I hope the intended ideas behind it are clear by the end. As usual, while I’m talking about specific sorts of situations with a narrowly-defined bunch of people, I’m thinking of something a lot more broadly applicable than that.
I have noticed a trend online, which is for people to say to others, “You are not autistic/AS, you are just using that as an excuse for poor social skills or an excuse to be a jerk.” I have an online friend who frequently gets this reaction, when she says something she considers just direct and someone else finds it insulting and flames her, and she tries to explain, only to get that response. Indeed, things like “Asperger’s is just an excuse to be socially inept” or “people who use Asperger’s as an excuse” have become givens in some parts of the Internet community. It is even accepted (with little to no apparent evidence) by some autistic people as fact.
There are several layers of disability stereotyping around this, and I want to attempt to disentangle as many of them as I can.
To lay some foundation, though, I want to talk about who autistic people are, using ‘autistic’ in the broadest possible sense. Please note that the statistics that bring us ‘1 in 166’ and ‘1 in 150’ and the like include people under the medicalized categories of not only autism but also things like Asperger’s and PDD-NOS, not that those three can even be distinguished at a superficial glance without knowing anything about a person’s early history. I don’t intend to talk more about who we are in terms of some sort of medical criteria though. I want to talk about who we are in the lives of people who know nothing about autism, or even those who know a little but believe themselves to know a lot. Because, with numbers so high, virtually everyone has known at least some of us.
Like a lot of autistic people, I have pretty good radar for other autistic people, or more broadly, other people who are neurologically atypical in some way. This doesn’t mean I can’t be wrong, but in all cases where I’ve been able to test it, I’ve been right. And these have been primarily places where a person would not be expected to be autistic. Prior to knowing about autism, I picked up on these things, but was only able to put them in relation to people I knew — people “like me” or “like my brother” or “like my father”, etc.
I have noticed, though, that other people, even many professionals, don’t always know what to look for. They think of “looking autistic” in a narrow way that has to involve, for instance, certain repetitive movements and a total lack of speech. When this is only one of many ways autistic people can look.
So I am going to attempt to describe what autistic people often look like. Be aware that non-autistic people can look like some of these things some of the time, and autistic people won’t all look like all of these all of the time. I’m trying to put into words something that I unconsciously map in a matter of seconds, and that will always be imperfect, much like all attempts I’ve seen so far to explain typical facial expressions to autistic people. But I hope to give other people some idea. It’s certain combinations of these things, not just one of them. And some relate directly to being autistic, while others are more about how autistic people might pass.
Some Of How I Notice Other Autistic People
One set of things I notice involves unusual patterns of movement.
The one most people know already, is what most people describe as ‘stimming’. Repetitive, unusual movements. Rocking of the torso (many different rates and rhythms are possible), rocking or shaking of head (front to back or side to side), flapping of hands (different directions, rates, and rhythms are possible), twisting and flicking of fingers and wrists, bringing the hands together and apart again, wringing the hands, moving from foot to foot, and many complicated movements that defy description, involving twisting, rocking, flipping, flicking, etc of lots of different parts of the body.
This can be movements that are just there in the background, it can be ones that seem to be related to emotion or level of overload, and it can be ones that seem deliberate.
There are also many people who have learned to disguise this to some degree or another. They might do mannerisms that are more typical-looking, but with an odd rhythm or intensity. They might do less typical-looking mannerisms with lower intensity, or switch between them so rapidly that they would pass as little mannerisms a person might ordinarily have.
One woman I know developed a whole series of ‘stims’ to do that cannot be seen if you are sitting in a desk, because she went to a fairly stereotypical Catholic school where you got whacked with a ruler for things like rocking. So she fidgets with her hands in front of her belly, and bounces her legs constantly. However, if she is forced to keep those body parts still, she will end up rocking or doing other things with her upper body. She can’t stop the movement, she can just move it to some other body part. Other people can actually stop these movements entirely.
I will also notice an unusual lack of movement. A person might move only as many body parts as they absolutely have to, in order to get the job done. Their body may, in between expressions and actions, remain as much as possible in a particular neutral position. This neutral position is one that other people can usually cover over more easily than autistic people, although some autistic people do manage to cover it well. I particularly notice their hands — slightly curled in, and their mouth — shaped like a trapezoid.
Their posture and walk can be unusually stiff or awkward-looking, or looking like someone much younger than they are would walk. Their arms might be straight down at their sides, held up with elbows bent near their chest, or clasped together. They might lean over slightly when they walk. They might have what seems to be a normal walk on one side of their body, and an unusual one on the other side. All of this may be more obvious when they run than when they walk. They might run with one arm held up in the traditional jogging position and the other flapping loosely at their side, or one rigid and one loose.
They might move with unusual speed or unusual slowness, or even a combination of both, with little to no movement in between the two extremes. Their movements may look heavily deliberate and premeditated, sometimes even if they’re not either one of those things, or not the sort of thing that ‘should’ be either one of those things. They might be clumsy, or extremely agile, or a combination of both in a way that is very odd compared to standard movement. They might have a wide discrepancy between ‘triggered’ or involuntary movements (which might be agile, or at least more agile or rapid), and voluntary movements (which might be slow, clumsy, or non-existent). This may be similar to people with other sorts of movement disorders (such as parkinsonism) without actually being those same movement disorders.
They might seem to string together movements in an unusual way, going through an entire series of movements on autopilot just to try to do something that comes in the middle of that series of movements, and then having to trigger another set of movements in order to get to the next part of what they want to do, and so on.
Here is a video of an extreme version of what I mean, being my rendition of what an attempt to boil water in a teapot can look like on a very bad voluntary-movement day (simulated by using the camera by remote control while not putting a lot of effort into suppressing the triggered responses seen in this video; on a truly bad day that way, I would not be able to suppress this sort of thing even with a lot of effort):
But such things can also be a lot subtler, involving fewer tries to get it right, and lesser degrees of overshooting the mark. A person can also be unable to move voluntarily without involuntarily moving other body parts that aren’t at all necessary to the movement, and that also aren’t the kind of movement that neurologically standard people do. (Neurologically standard people do seem to move more than they have to, but the moves are all coordinated into particular expressions and postures and such that are very different than what I’m describing here. A person doing what I’m describing will normally look awkward or unusual when doing it.)
The person’s facial expressions can look blank, oddly plastered-on, or unusual for the situation. They might also have standard facial expressions, but in a way that is more fleeting than usual and only possible involuntarily, looking fairly fake when they try to do them on purpose. They might be giving only fake eye contact, or giving very intense eye contact. They may have exaggerated expressions, or expressions that are barely discernible (I have two different smiles for instance, both genuine, but one of them is impossible to tell is a smile unless you know the position my mouth starts in, and the other looks like a regular smile).
An autistic person who is passing for non-autistic can have the movement pattern normally seen by a person who is extremely insincere. Sometimes similar to the “used car salesman” look, or the “Hillary Clinton” look for that matter. Except that in an autistic person, the apparent insincerity is usually due to a poorly-concealed effort to pass for normal, rather than an effort to manipulate people into spending their money/votes/whatever (not that a person can’t be doing both, but I’ll get into that later).
Another thing I notice is unconscious echopraxia, involuntarily engaging in the same movements as someone else, with no conscious intent and outside the normal realm of social mirroring (although it might sometimes be in addition to what looks like social mirroring, because an echopraxic person will often mirror things in both standard and nonstandard ways).
And of course, less social mirroring than usual, too. When I was 12 years old, the person who’d go on to become my best friend told me something, both of us totally unaware of autism at the time. She said that if I was in a room full of people, she’d bet that I would be the one person whose body language, breathing, and other movements were not unconsciously synced up with everyone else’s. I was perplexed by this at the time, but it’s now one of the ways I can pick up on people who might be autistic, in a crowded room.
There can also be attempts to mask involuntary weirdness by appearing to be voluntarily weird. Since chosen non-conformity can in some circles have higher social status than involuntary non-conformity, and since it can lead to an internal sense of being in control of one’s own weirdness, even though of course the person isn’t really. The person can seem afraid of being discovered as doing this, in some cases, too. So there are often autistic people among people who appear deliberately and ostentatiously eccentric, just as there are often people with learning disabilities among class clowns who’ve figured out it’s better to be considered funny than considered stupid.
(Be aware, though, that it can be very hard to tell, in an autistic person, the difference between something done deliberately and ostentatiously, and something done without having any other choice. This is because some of us have subtle motor or proprioceptive trouble that can lead to that impression in people who don’t know what they’re looking at, just as people can sometimes believe that people with Tourette’s are just ticcing for ‘negative attention’.)
Another thing to look for is a certain surprise factor. I’ve spent my entire life watching people be surprised at me: They’re either surprised by my intelligence and other abilities, or surprised by what I can’t do. Surprised is the wrong word sometimes. Sometimes they’re so surprised that they either try to disprove my abilities, or try to disprove my difficulties. Autistic people can be that bright person that you just can’t believe is really so dumb or spaced-out sometimes, or that dumb or spaced-out person that you just can’t believe is so bright or talented sometimes. Many of us spend our lives either being accused of cheating or otherwise pretending to be competent, or accused of being lazy or otherwise pretending to be incompetent, and a surprising number of us get both at once from different people, depending on whether they saw a talent or an area of difficulty first. This happens because most people fill in the blank areas of someone who looks capable at one crucial thing with “all these things I haven’t seen them do, they must be able to do, and if they’re not doing them it’s just because they don’t want to right then” and fill in the blank areas of someone who looks incapable at one crucial thing with “all these things I haven’t seen them fail at, they must be unable to do, and if they’re doing them there must be some kind of trick to it”.
Another common feature of autistic people’s abilities is day-to-day variability, and variability based on situation. In one situation, we can do things. Change one thing, or wait until we’re tired, and we can’t. Autistic people of all perceived “levels of functioning” tend to be accused of laziness, manipulation, or “playing dumb” at that point unless people understand that it’s really that variable, or that changing one thing can really make that big of a difference.
If you’re not autistic, keep in mind that in our areas of difficulty, we often have to work hard just to get to the level that you might consider the most basic level possible, and that expecting us to sustain even that level of ability, let alone those above it, is like expecting most people to be able to do calculus all day. There’s just no way.
So what this all outwardly looks like is a lot of surprises and a lot of variability in what we are doing, or can do. People who are trying to mask their incompetence at certain things will sometimes portray themselves as either “lazy,” “just screwing with you,” or as free spirits doing what their whims tell them to do and passing from one desire to the next in some sort of floaty and ethereal way. There are always social roles these things can be masked by, and even when they’re not positive ones, they can be more positive in some situations than being considered truly incapable. And being unable to do something can always be masked by “not caring” about it — “I don’t care about these ridiculously strict notions of personal hygiene anyway”, whether true or false, is a great way to mask an extremely low level of self-care skills that would, if noticed for what it is, potentially lead to real trouble. Affecting an intellectual-snobbish air of indifference to “such trivial matters” as ordinary social interaction can work for some people, too.
In a person who is passing, there is also often tension between who they’re trying to appear to be, and who they are. It can look like the usual angstiness some people go through; after all, most people hide certain aspects of who they are in order to fit in. But passing as non-autistic is a bigger disconnect than pretending to like bands you really hate, or even than pretending to like people you really can’t stand, or to feel feelings different than the ones you know you have.
Passing can mean, in its most extreme forms of disconnect, having no or close to no understanding of most of the words one is using, most of the interactions one is engaging in, etc. Possibly even not understanding the true nature of words, while using them all the time. It can mean not just feigning interest in things one is disinterested in, but feigning interest in things one doesn’t even understand, while, further, not even understanding what this ‘interest’ thing is that one is feigning. It can mean not just putting on different feelings than the ones you have, but not understanding what feelings you are putting on, nor how (or even that) they are supposed to relate to those sensations you do intuitively understand that occur inside of you in response to situations.
Basically, a skilled enough autistic person can take patterns of behavior and language they see around them, absorb them for long enough to acquire a huge repertoire, and recombine it into something resembling an entirely different personality than they actually have. And they can, again if skilled enough, do this with a level of unawareness more than most people can even imagine. Most people assume it stops at “saying things you don’t mean,” rather than “saying things without awareness of that particular concept of meaning,” or even “saying things without knowing what language is for”. For an autistic person, it really can be that extreme (and with the usual fluctuations and shutdowns and juggling of abilities, can vary between that extreme and less extreme).
So one outward thing to look for, is gaps in this kind of act. Seemingly incongruous statements. Insistence in someone who seems otherwise normal or eccentric, that people don’t really know who they are (especially insistence despite people trying to tell them this is the usual existential angst, rather than the result of a profound disconnect between comprehension and behavior). Sudden and seemingly over-reacting levels of rejection of another person’s identification with the persona they’re passing as. Pauses during speech that occur at slightly unusual points in time. Seeming to have two “layers” to their actions that are utterly contradictory in nature, with one set of actions pointing to their actual levels of comprehension and thinking and interest, and another set of actions masking it that might seem to point to higher levels of comprehension than actually exist.
Be aware that when the above happens, the disconnect is on the level of a disabled person passing as non-disabled, not a whiny person who just doesn’t realize how much like everyone else they really are. Yes, there are things all humans have in common. No, that doesn’t solve the severity of depression, disconnect, and alienation that autistic people often experience when passing, particularly when the person they’re passing as (or being passed off as by others, since passing can be entirely in other people’s heads, too) understands things they don’t. It’s a lot closer to a deaf person passing for hearing (while entirely missing at least 80% of conversations as a result), or a blind person trying to drive a car without crashing it or letting on that they’re blind, or a person from one culture being thrown into a totally alien culture (where nobody’s ever even heard of one’s own culture) with no preparation and trying to pass as comprehending, than a person with certain abilities trying to pretend they are similar to someone with roughly the same set of abilities but a different personality. Not that that’s easy either, but there’s an order of magnitude or two here that needs to not be missed.
Of course, not all autistic people are in a situation where passing is possible, whether due to their own abilities, the expectations of those around them, or both. And passing has gradations, too. It’s not like there are those who pass and those who don’t pass. It’s more like there are those who pass to different degrees, as different things, and in different situations. Passing can also be wholly unintentional and unnoticed, but I’ll get into that later.
Speech opens up a whole other set of possibilities of things to notice.
Tone is important. Often I’ll notice someone having more of a monotone than usual. This can range from subtle lessening of tone variation, to absolutely robotic-sounding speech. Some people have very little variation in tone, but more variation in volume. Their voices can sound flat to most people, but do show inflection, just not by changing pitch.
A person can also have a rhythmically varying tone that varies always according to the same rate. It may be just as unvarying in some ways as a monotone, except on a broader range of pitches, like a sing-song voice that repeats the same tones over and over again.
A person’s voice could also sound like they are making speeches every time they talk. I know of a few autistic people who mastered public speaking before they mastered conversational speech, and it can sound like that.
Their voice can also sound like a mishmash of different tones, sometimes a totally different tone, and accent, for each word or clump of words. When it shifts very often, it can sound like one of those automated telephone services that have different words programmed in with different intonations for each one, and a computer picks the order they go in.
It can also sound like a more smoothed-over version of this, with longer uses of the same tonal pattern, but still spliced together to some extent. Or it can vary between several of the things I described above, based on a whole lot of different factors.
A lot of times people are easy to spot by not having normal levels of modulation to the volume or sound of their voice. A lot of autistic people have what most people would consider a very annoying voice: Too loud, too nasal, the wrong pitch, the wrong tone, etc. But we can also have voices that are too quiet, very breathy, almost whispering. And, like movement, some people can do one or the other, but have trouble finding a middle ground for long. Many autistic people I know have some ability to control the volume of their voice if they concentrate on it, but the moment they slip up, they go back to loud or quiet.
Many autistic people have a sound in their voice that I do not know how to describe, but it’s a sound I associate with being cognitively very distanced from the production of the words. Some other autistic people could hear it in my voice when I spoke with seeming fluency, and they pointed it out to me. I can hear it in the voices of some of my friends, and have one friend where I can always tell when he’s having more speech difficulties because the sound gets more pronounced.
Someone tried, without ever hearing this sound, to convince me it was just a matter of nasal resonance or something, but it’s not that simple. I can hear it the same way other people can hear excitement or anger in each other’s tones by recognizing what their own voices would sound like. I know from the inside what it feels like, and what I sounded like when I spoke, so I can hear it in others. So much for a lack of empathy.
In people who use delayed echolalia as a functional means of communicating, or even of feigning communication, there are often certain telltale signs as well. The phrases used might seem slightly out of place. There are pauses in unusual places during the person’s speech. There are sets of sentences and phrases they commonly repeat to fill space while trying to come up with more words. There can be, if the mechanism is not working right or if the communication is only feigned, things said that are not the sort of thing you would think the person would ever really mean. The person might on the other hand come up with entire paragraphs beforehand, and then spew them all rapidfire out of their mouth.
There is always immediate echolalia, which tends to be pretty obvious. But there are also hidden forms of that too. My father and I both sometimes mouth things that other people are saying either right along with them or just after they say them, and if I hear a sound of a certain pitch my throat tightens as if I were trying to sing that pitch. We might echo noises in our surroundings too, not just words. I often involuntarily do cat, bird, and microwave oven noises, and I have heard of other autistic people who do car alarms. Some of us repeat noises or words over and over to ourselves, or have vocal tics causing forceful and involuntary noises or words. (These may be disguised as “just being silly” or “nervous habits”.)
Also I often hear autistic people who don’t talk at a standard rate for the society they’re in, either very slowly or very quickly. Sometimes almost too fast to understand. I hear people having trouble pronouncing words, too, which makes some people sound almost as if they’re not speaking at all, and other people sound slurred or indistinct in other ways.
And some autistic people seem more likely to stutter, either on sounds or on entire words. Or not to talk at all.
Many autistic people, maybe even most, seem to have real trouble with keeping language consistent. So they may vary a lot in how often they can speak, or how fluent or relevant to their thoughts it is.
And language itself is a whole different thing. Some autistic people seem completely lost without it, some seem to have extreme difficulty with it, and some seem to have both situations going on. If I see a person who absolutely can’t seem to function in any situations except those using language, I do think of whether they might be autistic. But same with if I see someone to whom all language is foreign, regardless of how proficient they are or seem to be. (For instance, I’m a very fluent writer when I can write, but language is very foreign to me, and I know people who are not as fluent writers but the only way they understand anything at all is through language.)
Another thing I notice is when people relate to things around them in an unusual way that suggests they perceive them differently than usual. Sometimes this involves noticing the texture, pattern, material, and shape of something more than the identity it acquires with words and social understanding. It can also involve physically interacting with objects in an unusual way, like smelling or tapping them.
One thing I find hard to put into words is an aspect of noticing that is different. It’s not just noticing things other people don’t, although that is a part of it. It’s also that there seem to be a set of things that people, especially in groups, are locked into noticing at the expense of other things. If a group of people is sitting around all seeming to pay attention to the same things as each other, and one person is noticing and relating to something outside that set of things, that is another clue, and an important one if it happens often and there’s no other explanation for it.
There’s also an odd thing I notice where, despite our tendency to stand out in other situations, many autistic people seem to not be noticed by other people. They can be standing right in front of someone, talking right to them, and everyone acts like they’re not there. It’s not a malicious sort of thing, they just don’t seem to notice the person at all.
I notice that when in groups of people, autistic people will often laugh just after everyone else laughs. They might have an odd laugh, and laugh harder than necessary in an attempt to prove they “get it” (which usually backfires).
I notice people talking so much that other people get bored and want them to stop, and they don’t notice, and keep talking. And also having trouble starting to talk. (Even both in the same person.)
I notice reactions to things that change, that other people might not react to. Even changing over from one room to another might be difficult, or from sitting to standing, or from any action to another. When change is unexpected, there’s a sound I can hear in people’s voices of barely-suppressed panic. And of course sometimes panic becomes more obvious.
And some autistic people seem to try to get used to riding change like a surfer rides a wave. Or find ways of masking a difficulty with change (and all that new information to process). Often having familiar objects helps, although what these objects are might not be obvious: Many autistic women I know, including me, have at some point or another used jewelry for this purpose, because it can be easily and unobtrusively carried just about everywhere and fiddled with, and is culturally accepted for women.
I notice autistic people in various levels and kinds of of overload, shutdown, and meltdowns. I also notice autistic people reacting very strongly to specific sounds, colors, etc. Whether because it hurts them because they’re sensitive to it, or because they just hate the stimulus or something associated with it, on an involuntary but emotional rather than perceptual level.
I notice some autistic people seeming what most people would call very rigid, and others almost the opposite.
I could probably go on for the length of a book, but I won’t right now. I think I’ve made the point that there are a lot of ways that I notice autistic (and other neurologically atypical) people. Next, though, I want to talk about what other people generally seem to see autistic people as.
How Other People Often See Us
One really important thing to be aware of is that, even if everything I just discussed and more would now seem really obvious, most people don’t seem to think of autistic people as autistic people, because they don’t know this category. They have different ideas about who we are, and their perception of us tends to blend in with categories of people they’re more familiar with. We’re not one set of people, in the eyes of most people. We’re assorted specific people, but we’re not seen as who we are, either. We’re just seen according to what roles people perceive us as having.
Here are a number of qualities I’ve seen attributed to autistic people. I am not saying they are right or wrong. I am just saying, these are the attributes other people often tend to give us based on qualities that are specific to being autistic, or specific to being an autistic person who is passing or being passed by others as someone else.
We’re the people who try really hard to fit in, but everyone knows we don’t. Some of us might be able to fit in as long as we’re content to be used by others in various ways — as the butt of jokes, or to get back at each other.
We’re that person who everyone played jokes on, but who kept coming back for more, being excited to be in on the whole thing even if it was only as the target.
We’re that person who always makes a point of laughing at that other weird person, in a bid for acceptance. And we get only partial acceptance at that.
And we’re that other weird person, too.
We’re the person everyone loves to hate, and can usually come up with some excuse to do so out of a repository of things we’ve said or done. But it’s really not that thing we said or did that makes them hate us. It’s something else, something intangible, about who we are. The particular thing they cite is just an excuse.
We’re that person people are embarrassed to be around, but also embarrassed to be embarrassed by.
We’re the people that get called spaz, retard, psycho, nerd, dork, jerk, loser, idiot, flake, space-case, and geek, among many other names.
We’re just plain weird.
We’re that person who always seems to do weird things, which must be for attention, because that’s why people do weird things. Or something.
We’re the people who just don’t want to do things, and that’s why we don’t do them. It has to be disinterest, not difficulty.
We’re the people where people always say of something we aren’t consistently able to do, “He can do that. When he really wants to, ya know.” And the people who say the flip side about: “She can’t really do that, someone must have helped her,” or “He can’t really do that, you must be imagining things,” or “She can’t really do that, she must’ve cheated.” Often we’re both in the same lifetime, even sometimes at the same time.
Our silence can be interpreted as everything from lack of the ability to think, to being stuck up, to being the “Strong, Silent Type” to not feeling like talking.
We’re the people who others look at our strange reactions to things and say we’re on drugs, even if we’re not. We might also be people who consequently find acceptance of some amount among drug users.
We’re the person who everyone calls “retarded” who suddenly comes out with things that seem very intelligent, and the person everyone calls a “genius” who can’t do some really simple stuff.
We’re flamboyantly, deliberately weird, intentional nonconformists who don’t care what people think about us, or who want to feel special.
We’re stupid, boring, and self-centered.
And it goes on and on. The one thing we don’t have is a place in most people’s heads as who we are. There are already all the above explanations and more. (Not that medical explanations of autism say who we are either. But there’s a whole lot of who we are that gets missed if you take our differences in thinking and perception, the ones that get called autism in the end, out of the equation.)
Disability Stereotypes
There’s one particular disability stereotype that’s going to become very relevant here. It’s the idea that disabled people get so many cool things and exemptions from things everyone else has to do.
It doesn’t matter that the parking spaces are close to the building because we need them to be, other people often will see them as a luxury.
Instead of seeing accessibility as barrier removal, a lot of people see it as giving disabled people special rights, privileges, and luxuries.
And there’s one other common attitude towards disabled people that’s relevant here: There are a lot of disability-themed insults, and lots of hatred and bigotry towards disabled people, not to mention all the systemic injustice and all that. But at the same time, a lot of people would feel extremely guilty about teasing or bullying a disabled person, or getting mad at someone for being disabled.
Just combine those two perspectives about disability, and stir a little.
And then… cognitive dissonance.
So there’s all these ways that autistic people can stand out, but most of us don’t stand out to most people as autistic. Even the ones who are the most obvious, often are mistaken for some other kind of strange or disabled.
People already have these ways of relating to us.
And many of those ways are not complimentary. They have a lot bad to say about us, and to say or do to us.
And then it turns out… we’re autistic.
Then the little “I must feel guilty about this if they’re autistic” thing kicks in, if they’ve absorbed that particular way of seeing things.
And most people don’t want to see themselves as mean, or the “sort of person” who would do these things to a disabled person.
Some people will at that point apologize.
Others, though, will want to stay mad at us (because people who are mad at someone often do), or else want to continue to have their excuses (based in estimations of our character, covering for discomfort with the fact that we’re unusual in the first place) to treat us poorly.
It’s really hard for some people to go from, bullying the outcast nobody likes anyway (so it doesn’t even quite count as bullying, does it?), to bullying a person with a genuine disability. It’s really hard for some people to go from “I’m mad at someone because they said something offensive,” to “I’m mad at someone because they’re literal about language.”
It’s a lot easier, to think any of the following, “This is a jerk. This is a person with all those bad qualities that make them someone we love to hate. This is just some idiot who keeps coming back for more, so he deserves what he gets. This is a gullible person it’s fun to mess with.” Etc.
It can even seem like you are granting one of those special privileges out, if you say “Hold on, I was wrong to do this, or think this, about this person, because they’re being literal, not obnoxious.” Or whatever.
And so there’s guilt, there’s cognitive dissonance about not being “that sort of person”, there’s resentment of what seem to be special privileges.
And so it becomes either, “You don’t have Asperger’s, you’re just using it as an excuse,” or “You may be autistic, but that’s no excuse.”
As with any set of negative stereotypes, if a person comes a long who is both autistic and mean and seemingly uses autism as an excuse to be mean, they confirm the stereotype. And then everyone who is just doing things an autistic way, gets to confirm the stereotype without even fitting it.
By now, people at least ought to know that the presence of women who are or seem irrational doesn’t mean women are particularly and specifically irrational. But stereotypes like that are still confirmed in people’s heads by the existence of people who fit or seem to fit them.
And of course, if you hear something often enough, it seems true even if it’s not.
So then there’s this sort of urban legend, that the Internet is filled with hordes of jerks who use autism as an excuse to be jerks. And the moment an autistic person shows up using autism as an explanation of something about themselves, then that stereotype is thrown in their face.
And autistic people ourselves have certain choices of how to respond to that.
We can say, “Yes, that stereotype is true. But the people who fit it, make the rest of us look bad, make it worse for the rest of us by confirming it, etc.”
We can just watch it happen.
Or we can say, “Hey hold on a minute, that’s a stereotype, and a harmful one at that. An explanation isn’t an excuse. We do have this particular kind of trouble with language, or engaging in typical interactions, and we are going to make mistakes that can be explained by being autistic.”
I’m sure there are other things too.
But every time an autistic person uses the “They make the rest of us look bad” thing, they’re falling into the same trap as women who direct their anger at being considered irrational, at particularly irrational women, instead of at the source of the problem. They blame those who fit, or seem to fit, the stereotype, for its existence and continuance, even though that’s not the source of negative stereotypes about people.
And they then continue it.
And people then continue to use it against autistic people.
In the end, this stereotype itself looks to me like an example of something that is frequently as an excuse in order to be a jerk… towards autistic people.
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