Deliberately stressing me out is, at this point, assault.

That’s how I see it anyway.  I don’t mean disagreeing with me.  Anyone who wants to disagree with me can disagree with me as much as they want to.  I’m talking about personal attacks, and you people know who you are by now.

I have severe adrenal insufficiency.  For those who don’t know what that means, it means that my body is not making cortisol.  I have to replace all of my cortisol with a steroid called dexamethasone, and I will be on dexamethasone for the rest of my life.

Cortisol is one of the hormones that is called a stress hormone, meaning it gets used when you are under physical or emotional stress.  This means that people with adrenal insufficiency have to be extremely careful when our bodies or emotions are under extra stress.

For instance, I recently had aspiration pneumonia requiring antibiotics.  This means I had to triple my dose of dexamethasone to avoid what’s called an adrenal crisis (click through to Wikipedia if you want the details).  Adrenal crisis is how people with adrenal insufficiency tend to die.

It’s not just physical stress that can cause an adrenal crisis, however.  It’s also emotional stress.  Wikipedia’s commentary on prevention of adrenal crisis is, I quote:

Adrenal crisis is triggered by stress and hence people with adrenal insufficiency need to avoid stressful situations.

That’s very important for managing adrenal insufficiency.

I recently found out that my father is dying of cancer.  We don’t know how long he has.  It has metastasized into several organs to the point where they haven’t been able to trace it back to wherever it originated.

My mother, his only caretaker, has a more severe form of a neuromuscular junction disorder (probably myasthenia gravis) that I also have.  She has to not only take care of him, but do all the jobs around the house that he used to do.  Before all this started, she had a myasthenia crisis and almost died in the ICU when she stopped breathing earlier this year.  Doctors have warned her that she’s not able to handle this and that she needs to move closer to a hospital.

My parents recently had to temporarily evacuate their home due to a forest fire that went right past it.

My grandmother has been slowing down and in poor health, but in a vague enough way they don’t really know what’s going on.  She says she’s willing to take antibiotics, but draws the line at invasive treatments like surgery, if they figure out what’s going on.  She says she’s led a good long life and she’s at peace with death.

I am under more stress right now than I have ever been in my life.  I have to consistently take a higher dose of dexamethasone than normal, just to be able to minimally function.  My endocrinologist says I’m doing the exact right thing.  But taking the extra dexamethasone doesn’t magically make the stress or its effects and dangers disappear, it just makes you safer.

I reserve the right to delete whatever posts I want for whatever reasons I want.

I reserve the right not to explain to you why I’m deleting your posts.

I reserve the right not to owe any of you an explanation for anything I do on this blog, or in my life in general.

And if you come here deliberately trying to antagonize me — and you know who you are, because you’ve been doing it for years — I will treat it the same as if you walked up and tried to start a fistfight.  Because right now, more than ever, any stress can have a catastrophic effect on my health.  Adrenal insufficiency is the worst disease to combine with stress, and myasthenia gravis doesn’t help either, especially now that I’m going on Cellcept (an immune-suppressing drug).  And don’t try to tell me these diseases aren’t real, my doctors who in both cases did the labwork personally, will laugh in your face. And to be abundantly clear it’s adrenal insufficiency (i.e. they could not find cortisol in my blood at all), not adrenal fatigue (i.e. a condition used by quacks to blame literally any symptom on, regardless of your actual hormone levels, which then puts you in danger because you’re not getting treatment for whatever the real disease is).

So if you disagree with me, disagree with me.

But if you’re here to antagonize, to bully, to start fights, with a chip on your shoulder, to threaten me, to accuse me of not really being disabled, to deliberately trigger my PTSD, and all the other things that stalkers and trolls like to do for fun?  Fuck off back where you came from and never bother me again.  And understand that if I actually enter an adrenal crisis because of stress you caused, then you are partially responsible for what happened.  I guarantee you the adrenal insufficiency is 100% the real deal, no matter what you think.  And people who know me will view you as responsible.  If you have enough of a conscience to care about things like that, then think about it before you pick fights with me for fun.  I have enough going on right now without that.  Have some basic human decency for once.

Fat people and feeding tubes.

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.

 

After this, I am never again putting up with bullies telling me that my medical conditions are imaginary.

After my diagnosis of adrenal insufficiency, then the last foothold that bullies had made into my mind, it fell away like sand.

It wasn’t just that the diagnosis was so obvious, so grounded in specific laboratory tests that nobody with any knowledge could argue with.  It wasn’t that, so much, at all.

It was what I felt in my body.

It was the way I felt life returning to my body.

It was the way I felt sturdy rather than fragile.

It was doing forty jumping jacks in a row, fast.

It was going up seven flights of steps to use a treadmill for ten minutes, then go all the way downstairs, and then back up to my apartment.

It was doing things, large and small, that my body couldn’t do before.  Couldn’t.  Not even a little.

It was feeling that fall away from me again, temporarily, when my body first adjusted to the dexamethasone dose I was on, and having it come back again when we raised the dose.

I realized that the reason the bullies got to me so badly was because deep down I thought maybe they were right.   I’d experienced a severe but undiagnosed chronic illness for years, and it had gotten much worse six years ago.  I painstakingly hid as many aspects of it as I could, let people believe there were other reasons that I could do less online, because every time I described an illness, I’d get bullied for it.  I’d get told I was making stuff up for attention.  When I was hospitalized last year, I sought help online with obtaining access to a life-saving treatment, and some bullies even had the nerve to capitalize on a life-and-death medical situation to give them a platform to denounce me again.  Then when I described the situation, one of them had the extra nerve to come here and tell me that because I was fat, I couldn’t possibly have enough eating problems to need a feeding tube.  (I’ve lost nearly 70 pounds involuntarily.  When it was only 40 pounds in 2 months, a doctor told me I was burning muscle and that it was going to affect my heart.  Do I have to be dead of starvation before I’m thin enough for my gastroparesis to be real?)

And on some level I accepted this.

And I accepted it because I thought that maybe I really was imagining things.  After all, I had no firm diagnosis for this mystery illness that was causing me so much trouble.  Maybe I didn’t want to get better.  Maybe if I just wanted to enough, I could jump and run and walk up stairs.  Maybe I didn’t have to be in bed all day.  Maybe the vomiting and burning hot and freezing cold and total limpness were something I could make go away, with everything else, if I wanted to enough.  Maybe I was somehow making it up, and then fooling myself into thinking I wasn’t making it up.

And I can tell you that nearly everyone I talk to with a hard-to-diagnose condition has thought this way.  But those of us who have been bullied or harassed, and had rumors spread about us that we’re faking everything?  We think this way more.  We may hide it well, but most of us think this way, at least on bad days.  And it’s a terrible way to think.  It winds around your head and makes it hard to take any action at all in life.  It makes you doubt the deepest things about yourself.  It can make you passive, it can make you lash out, but either way it makes you less effective at anything you’re trying to do.  It’s hard to get anything done when you’re divided against yourself, doing the bullies’ work for them.

Anyway, this has all changed.

I don’t think like this anymore.

The test results tell me that everything I felt wrong with my body all these years, has a measurable, physical cause that’s very simple:  I don’t make enough cortisol, because I don’t make enough ACTH.  Years of depletion has led to chronic and even life-threatening illness.  And this is clearly adrenal insufficiency (a medical diagnosis), not ‘adrenal fatigue’ (a vague catch-all that requires no actual proof of an adrenal problem at all).

But it’s not the test results.

It’s what I feel in my body now that I’ve gone on dexamethasone.

It’s being able to run and jump and climb stairs and go for long walks.

It’s feeling sturdy for the first time in years.  It’s feeling the fire of life course through me for the first time in years.

It’s realizing I could live to old age, and starting to wonder what it will be like to have grey hair and wrinkles.

No bully can take those realizations away from me.

And the change that has happened in me makes me realize how disgusting this form of bullying is, and what a low form of humanity anyone is who deliberately participates in it.  And I’m angry.  It’s an intense, focused anger.  Focused on everyone who has ever tried to make me doubt who I am and what I am experiencing.

Because I have a better fucking track record than most people with chronic illnesses, when it comes to having things show up on actual test results like this.  And yet every time, every time I have to prove myself.  Sometimes the proof comes at the last minute.  One day the proof may come too late to save me, and you’ll have that on your conscience, if you even have a conscience.

But seriously:

Problems urinating, dismissed out of hand as psychological in 2000, diagnosed around 2006 as spasticity of the urethra, treated with an implant that helps my muscles relax.  But not before I had infection after infection after infection.

A variety of really nasty symptoms, dismissed out of hand as being ‘fat and lazy’ and other things of the like, for years.  By the time, around 2003, that they found the problem, my gallbladder had not only produced two large gallstones, it had failed completely and was sitting in there dead by the time they pulled it out.  The surgeon was visibly angry at everyone who had delayed diagnosis and treatment.

Breathing symptoms.  Got me thrown out of emergency rooms more than once because treatments for asthma didn’t help — cyberbullies then proceeded to use those stories to convince people that “even ER doctors think she’s manipulative, see?”  They never thought to check if it was something other than asthma.  Eventually they found an infection and atelectasis in part of my lung.  Even after that was fixed, I was getting told that my continued breathing problems weren’t a big deal, were all in my head, all that kind of thing.  Until I got assigned a new pulmonologist, who did a CT scan and found “mild bilateral lower lobe bronchiectasis and scattered peripheral tree-in-bud opacities consistent with small airways disease”.  When treated for bronchiectasis, the problems got significantly better.  Imagine that?

I had ongoing joint pain that I knew wasn’t arthritis, so I avoided telling doctors about it because I didn’t want to tell them about one more thing wrong with me that didn’t fit in the usual box.  Finally a doctor badgered me into admitting that I had joint pain, then had me perform a series of movements.  He diagnosed me with benign joint hypermobility syndrome on the spot — a condition that’s characterized by overly flexible joints combined with widespread joint pain.  The test is really simple.  Bullies claimed I was faking this even though I posted pictures of my thumb flat against my wrist, which is impossible to do without a hypermobile wrist joint.  (I can also stick my foot behind my head and other fun party tricks that I really shouldn’t, medically, do.  But I do do it sometimes because it’s the fastest way to prove to a doctor that I’m not kidding around about being hypermobile.)

I had ongoing problems with nausea and food that stayed in my stomach for way too long, sometimes I’d throw up things I’d eaten days before.  This was eventually diagnosed as gastroparesis, using a test where you eat radioactive eggs and they test how slowly it goes through your stomach.

And now I’ve had this baffling array of symptoms, for years, and the blood cortisol test, ACTH test, and ACTH stimulation test confirmed that it’s a severe secondary adrenal insufficiency.  My response to treatment, according to my endocrinologist, more than confirms it.

How many people with chronic illness can say they have a track record this good?  Of saying they had a medical problem, and having it actually show up on a test in such a clear fashion?  I mean, the problems I have tested as having have not by any means all been the problems I was expecting to have.  But they all eventually showed up as something.  And that’s more than a lot of people can say.

So why the extensive bullying about being fake, when I have more proof of my authenticity as a sick person than most sick people will ever have?

It’s not because there’s any actual evidence that I’m faking anything.  It’s because bullies will be bullies, and they sensed this as a vulnerable point for any person with a chronic illness.  It’s because, I’m sure, a few of them have actually convinced themselves that they are on a righteous crusade against evil, and I am evil.  It’s because I have some people who, for reasons unknown to me, really hate me, and they thought this would be fun.

But it’s also because there’s a cultural norm that says that disabled people are all potential fakers until proven otherwise.

It’s because everyone is always looking for whether the wheelchair user can wiggle her toes, whether the blind man picks up a book and reads it with his eyes, whether the nonverbal person can say a few words here and there when xe’s under sufficient pressure and all the stars align just right.  It’s because people believe that we are all getting away with something.  That disability is about getting something for nothing.  That being sick means getting special privileges.  That everyone would fake illness to ‘play hooky’ from life, if there wasn’t constant vigilance against the possibility.

Governments love to spur on this kind of hatred and suspicion.  Disabled people in the UK right now are afraid to leave their houses because hate crimes have risen.  And the hate crimes have risen as a result of a media campaign saying that disabled people are exaggerating or faking their conditions in order to get benefits that they don’t deserve.  People are afraid of getting beaten up in public, because they’re being scapegoated by the government for the financial crisis that’s plaguing the world today.  And disabled people are always among the first to get scapegoated for such things.  We’re too expensive.  We need too many special privileges.  This always happens, and horrors follow.

According to Paul Longmore in Why I Burned My Book, the idea that you need to watch to make sure disabled people aren’t cheating on our benefits goes back to the English Poor Laws.  I wish I had my copy of his book on hand so that I could tell you everything he knows about the subject.  But basically it made it clear that there were poor people who deserved help, and poor people who didn’t deserve help.  And that we needed to always be careful only to be helping the right people.  And that the wrong sort of people would always be trying to take advantage of our charity and goodwill, so we must always be on guard.

And that attitude is what’s behind the suspicion of any disabled person who isn’t 100% stereotypical.

Speaking of which — you want to find a disabled person who is faking?  Find someone who has absolutely consistent abilities that never waver in any way, who is always able to do the same things, always unable to do the same other things, and those things never shift around.  She’ll be very much like the stereotype of whatever condition she claims to have, and won’t deviate in the slightest.  She will be everything you expect of a disabled person.  And that is why you will never find her so you might as well give up looking.

The people you pick on relentlessly as fakers are the ones who are generally actually more typical of disabled people, but less stereotypical.  We don’t have just one condition, we have two or three or four at minimum.  Our abilities are a moving target that we can’t always predict, let alone anyone else.  We seem to be able to do one thing but unable to do something else that we “should” be able to do if we could do the first thing.  We don’t obey any of the rules people have in their heads of how disabled people are supposed to be like.  And because of this we are vulnerable and because of this we are targets for relentless bullying, harassment, and defamation.

So a lot of us hide things that aren’t stereotypical.  Or we hide how bad things are.  Or we hide how bad things have gotten.  Or we try to play the role of a more stereotypical disabled person, hoping it will free us from bullying.  But then if we are exposed as having hidden anything, ever, or pretended anything, ever, then bullies have ammunition to accuse us of faking, and it all gets worse.  So we’re trapped in a double bind:  There is no way to be ourselves and escape ableist bullying.

I realize how much I have come to accept that I am an acceptable target, when I think of a good friend of mine and what would’ve happened (and it almost did, but for a twist of fate) if she’d met up with the same bullies I met up with at a certain point in my life.  It makes me shake with rage.  It makes me cry.  The very idea of her having to go through this makes me furious.  And I realize that I need to be just as furious that I’ve been forced to go through this, often with very little support and backup, for so long.  Because I matter just as much as she does, and I’m just as real as she is.

I have to say, though, that I have met people who were faking or exaggerating disability in order to manipulate people.  Very few, but I have met them.  And I understand that when done in certain ways, such actions can be devastating to everyone forced to be around them.  It can destroy trust.  It can destroy the cohesion of communities that are important for disabled people.  It can become an almost vampiric scenario where someone is draining time, energy, and money from people who can’t spare any of those things.  That isn’t what happens the majority of times that people fake things (the majority of the time, it hurts few to no people, actually), but it can happen, and I understand why people are changed by it, why they have trouble trusting after something like that happens.  I’ve been through it myself and it left my head upside-down for a long time afterwards.

But I’ve seen much more damage done to disabled people and our communities, by people who are overly suspicious of everyone for faking, than by people who are actually faking things.

In fact, I’ve seen irreparable damage done to disabled people simply at the idea that someone might think they were faking.  It’s an insidious thought that gets into people’s heads and won’t let them go.  It’s torturous.  I wouldn’t wish it on my worst enemy.  And I’ve seen it all but destroy a lot of very good people who’d done nothing wrong.  And these aren’t even people who were directly targeted for ableist bullying the way I have been.  All they had to do was see that the bullying happened, and that was enough to instill fear and self-doubt.  Many people with disabilities and chronic illnesses are dealing with so much self-doubt already, that bullying and witch-hunts simply pour gasoline on the fire.  I would not be surprised if some people who were already feeling they had no hope of being understood, had been driven to attempt suicide this way before.

My self-doubt is gone.

It was like a fog that kept me always looking in the wrong direction.  It made me unable to see myself.

I can see myself better now.  I am strong.  I am as real and genuine as everyone else.  I have done nothing that deserves being singled out and attacked.  I have far more proof of the reality of my medical problems than most people who are not being targeted have of theirs, and that tells me that I’m not being attacked because of anything I’ve done.  But I can see, clearly, that I am stronger than anyone who has ever tried to attack me.  Because I’ve now survived relentless attacks on my character, death threats, emotional manipulation, and head games.  Things they probably wouldn’t have weathered anywhere near as well as I have.

I don’t have any hope that they will stop what they are doing.  Because I can see now that what they are doing has nothing to do with reality.  No amount of proof is enough.  In fact they probably want me scurrying around trying to prove myself.  They enjoy that.  Because what they want is control over my life.  They want me to be scared and running around frantically trying to please them.  I’ll probably be dealing with this until they get bored or something, if that ever happens.

But there are things we can do to minimize the impact of people like this.

We can make it a community norm that it’s intolerable for people to bully each other about their disability status.

We can support people who are being bullied about their disability status.

We can support people who are not directly being bullied, but who express fears about whether their illness is imaginary, whether they are just somehow making things up without knowing it, that kind of thing.

We can make things safe for people to admit to feelings like that, without condemning them as guilty just because they’ve doubted themselves.

We can work against community norms that say it’s really important to catch disabled people “cheating” at being disabled.

We can make sure bullies know we aren’t listening to them, and we can make sure that their victims (both direct and indirect) know that we are on their side (because there’s nothing bullies love more than to make their victims feel as if we are alone and everyone is against us).

We can work for love and compassion and against one-upmanship, bullying-as-funny-entertainment, and ego.

There’s all kinds of things we can do.

And inside of ourselves, we can dismantle this self-doubt.  Because self-doubt of this kind, it’s what this kind of bully wants.  They don’t just want to make other people doubt us.  The real fun comes from watching us squirm, watching us doubt ourselves, watching us tear ourselves apart.

I for one will never tear myself apart over this again.   Because I know now, know in my bones, that this has all been real, all along.  I feel it every time I walk up and down four flights of stairs without my legs giving out or even getting out of breath.  I feel it every time I exercise without vomiting.  I feel it every time I do jumping jacks, run, skip, and do all these things I couldn’t do before.  I feel it in the fact that I never anymore get so exhausted that I need a bipap to breathe.  I feel it in every single change my body has made since starting dexamethasone.  This is what reality is.  Anyone who thinks otherwise can screw themselves, but you won’t get a voice on my blog, not to tear me apart, and not to tear anyone else apart either.  It’s what Dave Hingsburger taught me years ago:  I’m okay, you’re mean.  That’s all I need to know.

Feeding tubes and weird ideas

My favorie BADD post: Tube-ageddon.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Posted with Blogsy

From my mother.

I don’t normally respond to the various bullies that try to make false claims about my life. Generally, it’s something really inane, like they’ll claim to be revealing a secret about me when it’s something I’ve written publicly about before (often many times, in many places), they’ve made something up, they’ve played on inaccurate interpretations, or they’ve twisted something real and given it sinister meanings. But when I made an important post about the way police treat disabled people, my mother (who has been commenting on my blog for years) replied and gave more details about an incident that happened to me when I ran away from a day program after a fight broke out. A particularly asinine repeat-bully (not just of me but of many other people with ties to autism) responded by attempting to tell me that I had written what my mother said. I told my mother, and she sent me the following video in the mail:

http://www.youtube-nocookie.com/v/s9ISrTDmryI&hl=en_US&fs=1&rel=0

It’s fully captioned, but if you can’t play videos for some reason, this is what it says:

“Hi, I’m Anna Baggs. Amanda Baggs is my daughter. I’d like to make some things clear. Amanda is autistic. She was diagnosed when she was 14. I sometimes write on her blog under the name ‘Mom’. No one else blogs there under that name. Amanda does not tell me what to write, and neither does anyone else. I’d like to make some things perfectly clear. Amanda has my infinite support. I’ve had a chance to meet some of the other bloggers at Autreat last year. I took Amanda and it was an incredible experience. For others that I have not had a chance to meet, this will serve as our introduction.”

“The internets kill the soul.”

Which is quote from this post from flip flopping joy.

Can’t word much a lot right now due to ongoing medical stuff (incapacitating but not bad, will fill in later) so all can say is go read that post.

Kowalski and SBWG close their blogs due to cyberbullying.

Blogging Against Disablism Day: An Obituary

A community that tolerates and enables bullies, stalkers, and miscellaneous similar people, is no community at all. Do that and eventually many of the people who are or fear being targeted, will just fade away and hide. And only those of us stubborn enough to remain despite the harassment, defamation, and death threats will be left. Taking part in a community shouldn’t require the level of stubbornness I have learned, or disregard of one’s own safety. I go online every day knowing that my address has been posted on the web along with solicitations of murderers, rape jokes, and just about every possible level of nastiness and invasion of privacy — and my friends, family, and coworkers have been subjected to the same things. I’ve even seen other people first victimized by the same bullies and then told “The bullying will stop as soon as you denounce Amanda/join in the bullying.” I have learned to live with that. But people shouldn’t have to live with that.

There is no excuse for actively enabling bullies. These things are not some kind of “it takes two” situations (flashbacks to being beaten up in elementary school and being told “it takes two”). You don’t see me, Kowalski, SBWG, or most other targets running around harassing, threatening, or stalking anyone (although you can bet that bullies try to make themselves look as if that is happening to them to justify what they do to us). Sure I’ve seen bullies and their enablers bullying each other from time to time, I’ve seen two stalkers stalk each other. But it’s not normally what’s happening. These aren’t personality conflicts. This isn’t about someone just “not liking” someone else. And it’s not like being autistic or otherwise disabled means someone’s innocent — back in my IRC days we had at least two autistic stalkers and at least two autistic child molesters banned from our channel as well as miscellaneous other autistic bullies. (I’ve also heard “But she hasn’t killed you yet so the death threats are harmless.”. Seriously?!??)

This has to stop being acceptable. People have to stop being complacent. Any community that tolerates and enables bullies is practicing de facto exclusion of everyone who is in so much fear of being a target that they leave. That’s why my blog doesn’t allow such crap to go on here. If bullies want a forum they can have it somewhere other than here. (And when autistics.org begins to allow other blogs again that will continue to be our policy.) You shouldn’t have to have the kind of emotional shielding I have learned in order to participate in online discussions. (And yes this is an accessibility issue.) People need to take a stand on this stuff and quit sweeping it under the rug. Otherwise the bullies win every time someone fails to write because they’re afraid. (Although what the bullies are winning always confuses me. I mean they don’t actually gain anything legitimate or useful from what they do. They just get to be incredibly nasty to people. Which is a pointless goal.)

Also, bullying does more than silence people. It also kills. People commit suicide because of bullies all the time. (So all of you well-meaning people who enable bullies? Look at what you’re enabling because it ain’t harmless. And it wouldn’t be harmless even if it “just” caused pain, fear, and suffering either.)

I’ll end by linking to meloukhia’s post: Internet: It’s time to talk. And a warning: neither bullying nor apologist/enabling bullying will be tolerated in comments. So don’t even bother trying.

Edited to add:

Riel of Amorpha came up with a list of good and bad ways to deal with this kind of bullying and put it in comments. I am adding it to the end of this post because it’s important enough I don’t want people to miss it:

Finally came up with some thoughts (after we said in reply to Kowalski’s post we were still thinking about it) about things that we think are helpful and not helpful when a community is trying to deal with online bullies. Much of it gained through bad experience when we tried to deal with them in the wrong way or other people around us did or tried to encourage us to deal with them in the wrong kinds of ways.

What is useful:

• Supporting the victim of the bullying and affirming that they have the right to be free from bullying.
• Taking their fear seriously (as opposed to blowing it off with “oh, you shouldn’t care what those people think,” etc).
• Block known bullies, and people who have agreed to defame others in order to escape bullying themselves, from commenting in any space you can control. Even when their comments are not actually harassing or targeting anyone. Because just seeing their presence can have a chilling effect on others– “okay, maybe they didn’t attack me that time, but what about next time?”
• Keep others in a community informed about the activities of known stalkers, bullies, etc, if you see them going after new victims, starting new harassment campaigns, etc. Also if you know they’ve been creating new aliases, sockpuppets, posing as others, etc.
• Find some way to warn newcomers to a community about stalkers and bullies. Especially if you see them gravitating towards bullies because they (new people) haven’t seen their bad side yet, or are confused about who to trust, or are falling for the pseudo-authoritative veneer a lot of bullies have, or think they should “give them a chance,” etc.
• If harassing/bullying/intimidating comments do get through in any community you have power in (in large communities, for instance, sometimes this can be hard to prevent), make clear, for both the victim(s) and for bystanders, that you will not tolerate this kind of treatment of others.

What is NOT useful:

• Telling the victim of the bullying to “not care about what other people think.” To a certain extent it’s true that you need to not care what other people think, if you want to express opinions that are currently not accepted by most of society. But when harassment goes past a certain point, and especially when it gets to the point of threats of physical or legal harm, it can’t be reasonably ignored.
• Telling the victim of the bullying to ignore it because the bully is too “unimportant” to be taken seriously. “Unimportant” people can still become extremely persistent harassers and stalkers. And it doesn’t matter how “unimportant” someone is if they’re genuinely able to convince others of their lies, or incite them to attack or threaten people.
• Trying to argue/letting other people try to argue with them in comments. This both has a chilling effect on others and floods out any attempts at actually productive discussions. (Several people have already talked about why doing this in the name of “free speech” is a bad idea so I won’t go into it.)
• Trying to drive them off by being “just as mean as them” or trying to incite “war” between your supporters and theirs. Just… no, this always goes horribly wrong.
• Trying to find a “middle ground” between yourself and a bully, or between your ideas and theirs. A bully will never accept a middle ground. They will only accept terrorizing and manipulating you into shutting up or repeating their ideas as if you agree with them.

We’ve also seen the thing that AnneC mentioned about bullies (some of whom appeared to be totally the opposite of bullies at first meeting) acting like they are “in the know” about everyone and everything and like they can inform you about all of it, and putting scandalized interpretations on everyone and everything and getting people emotionally riled up for their own purposes.

On growing up with strange sensory reactions, and the difference between passing and being passed off.

In discussions with other autistic people about how other people have reacted to us our whole lives, I recently realized another thing that makes me different from some other autistic people (I honestly have no clue whether it’s most or only some). Which is in my reactions to my surroundings.

A lot of autistic people who, like me, were assumed (rightly or wrongly) to be anywhere from somewhat to highly capable by many people during our childhoods, seem to have something in common that I don’t have: They were most of the time a combination of several of… stiff, unusually formal, considered “dweeby”, reserved as far as interaction with their physical surroundings yet obviously “engaged” to a certain degree, and in general… lots of similar things I don’t quite have words for.

I was considered some of those things some of the time. But I’ve noticed some people assume that’s how all autistic kids who were regarded as highly competent tended to act. And they leave out of their calculations a lot of things that were true of me.

Yes, I was socially awkward, had meltdowns and shutdowns, and lots of other stuff. But I was most of the time very, very involved in my physical environment in all kinds of ways that made me stick out in totally different ways than many other autistic kids did. Note that it wasn’t all of these things all of the time. It was at least a few of them most of the time at minimum, and when I wasn’t hiding as well it was more than a few nearly all of the time.

I would sniff things. Books, pencils, wood of all types. If I saw a cat I would get down on all fours and politely (in the cat world) sniff their noses. I would sniff rocks, tanbark, metal, rubber, computer and TV screens, and many other things I came into contact with. Not to mention picking my nose and sniffing the contents (no I have never been able to stop no matter how much teasing or reprimands happened or even injury to the inside of my nose by peeling the lining off, it’s like trichotillomania, it’s not that easy).

I would also grab things and stick them really close to my eyes, or wave them around in the vague vicinity of my eyes (I have good peripheral vision so this means anything from just in front to on the sides). I would wave my hand in front of computer monitors. I would do things with my fingers just to watch them. I would spend hours watching ants or water (which I might also get my hands involved with) or lots and lots of other things involving getting things really close to my eyes. And chasing dust particles. Not to mention doing a very intense purr-like noise that jiggled my eyesight up and down.

I also did elaborate things with clothing, hair, and jewelry. Not for the purpose of decorating myself for the sake of others, but for the sake of being able to carry around things I could either grab and look at, or see anytime I had a mirror, or (in the case of braids) run my fingers over. This stuff wasn’t an enactment of a social ritual (which is good because sticking earrings and pins throughout your hair doesn’t get you anything but laughed at) or for any reason external, it was entirely so I could have lots of portable stimtoys. I could grab the necklaces and stare at them or suck on them, ring my bell necklaces in my ear, stare at, smell, or suck on my paisley shirts or busy-patterned skirts, run my fingers over coiled braids or other jewelry, or stare at the whole mess in the mirror.

(The photo shows me sitting in between my two brothers, in my brother’s room, with lots of jewelry on, staring at one necklace or similar object.)

I also had some visual phenomena I would get really absorbed in. I see various patterns that probably range from retinal lights and afterimages to migraine auras (both my parents get migraine auras without the headache) to the occasional seizure. But I would get totally lost in that stuff, and find patterns in it the way people do with clouds. I got sent to at least two separate counselors (one in an academic summer camp and one in my brief attempt at high school) for staring at walls in my free time in order to watch that stuff. Other kids just used that as an excuse to do things like wave their genitals in my face to try to get me to stop (it’s amazing what people will do to you for the crime of not appearing to pay attention to them, even when they make it clear you’re weird enough they don’t want your attention).

I was constantly sticking things into my mouth long after that phase is over for most people. Not just pens or pencils either. I chewed sets of rubber jacks balls to the point of really embarrassing my mother once when someone caught me sticking several in my mouth on video. I did this the most often before puberty but I did it after too. I was really happy when someone gave me different lengths of aquarium tubing when I was nineteen for the express purpose of chewing. I chewed and sucked on my own skin, too, hard enough to leave marks. And my hair. And ran the outsides of my tongue over my molars over and over to create a sour taste. And had a metal necklace I sucked on and spat out over and over until the outer gold-colored metal wore off.

I also liked textures like velvet, cat fur, varnished wood, anything large and cold and flat, etc. and pressed anything from hands to cheeks to large amounts of my body onto them, or rubbed them.

I had a weird thing I did in chaotic environments like school dances where I would frequently stand right by the speaker because even though it was earsplittingly loud the music was more orderly than the crowd noises. (At first I’d dance if asked to, or outright find someone to dance with if the song was “Stairway to Heaven”, but later I found it easier to just spin in circles.) I also hummed, whistled, and sang, sometimes all in rapid succession, and had a single toned hum I would do by keeping my ears clicked so internal sounds were loudest and then humming to drown out other chaotic noise. Got pulled out of school assemblies for clapping my hands over my ears over and over to create a rhythmic pattern to people’s voices or music. Played single songs until I wore out several tapes and tape players.

And this is not to mention the spinning, which I did at every dance starting just after seventh grade instead of running up to the speakers or trying to dance with people. And which I also did plenty of without dances as an excuse. And the pulling out all the paper towels, and all the soap, from dispensers, then smearing the soap all over mirrors. And climbing things. And assorted other things that were more actions than any one sense being explored.

And doing something kind of hard to describe. In new situations my sensory input seemed more and more chaotic. (Been planning a post on something related to that too.) And after awhile instead of panicking, I’d started embracing a sense of total randomness. This is the same sort of thing that could make a person really lose it in new situations, but it’s sometimes possible to sort of ride it out like some kind of funhouse ride instead of becoming tense or fearful. (Or as an autistic friend of mine puts it, “As long as there are shopping malls, I will never need LSD.”) This is yet another thing you never hear about because it’s assumed “resistance to change” is just The Way Things Are for all autistic people instead of being one of many possible responses to a more central experience of having things become really confusing the more change or new or unexpected input there is.

And when I did talk about my special interests they were about things like fractals, chaos theory, alternate realities, and psychedelic rock bands. Or any and all kinds of surreal or nonsensical things (including going around saying weird things in several languages that I couldn’t actually speak except to say weird things in). (The embracing of nonsense being one more way to deal with the speed of things changing around that time.) This… did not help.

Then there was… the other stuff. The ways I seemed cut off from the world instead of overinvolved in the wrong parts of it.

Part of that was due to my being heavily tuned into internal sensations. Like when I would sit down cross-legged, pull my skirt across my lap, stare at it, and proceed to vividly replay in my head scenes from Red Dwarf or Star Trek (other times it was listening to white noise and picking out single frequencies to replay songs I had memorized). Other times it was just something like pulling my hair over my face like Cousin It (wonderful to stop seeing lots of overloading stuff), or sitting around with my eyes shut. Or what my parents just called “Staring” with a capital S, where I’d basically sit there and appear to be staring at nothing at all (which could range from overload to replaying things in my head to just some coincidence of my eyes and facial expression, or could even be getting lost in various visual oddities I discussed before).

The point of all this? When many people picture an autistic kid who went undiagnosed until early adolescence, they seem to picture the formal stiff thing going on. They don’t picture the kid who involved herself in all kinds of supposedly inappropriate sensory activities, and seems physically pulled towards these things as if by gravity. But that was me.

I didn’t do these things every second of every day. But I did them enough to attract all the wrong kind of notice. While some people called me a nerd or a computer or those usual insults, much of the teasing I got revolved around being very, very attracted to physical sensations of all kinds, or else looking very, very tuned out. There’s a reason my mother insists on comparing me to Luna Lovegood rather than a more stereotypical nerd (or to, say, Ernie Macmillan, who was so formal he sounded pompous).

Yeah I did get called a nerd But mostly I got other things. When you’re younger and you behave this way, you become a weirdo, alien, psycho, crazy, tard, space case, elf (yes that whole fantasy started because someone called me one — if I could pick a Tolkien creature to compare myself to I’d be an Ent) etc. When you get a bit older you get called even crazier. And then eventually everyone and their dog thinks you’re on drugs.

This is one reason that I question the entire concept of passing. I rarely spent five minutes around other children before they figured out I was different. Often it was more like five seconds. Kids weren’t generally picking up my intellect or nerdiness (they might pick that up later but not immediately), they were picking up my strangeness. Much of the time they said so quite openly and as we got older they were trying really hard to explain why I was strange. But I was always strange, there was never a point even when I did my best attempt to “behave” that this was ever in question. Even when neuroleptics drastically tamped down on my ability to explore my environment in those ways I could expect to wait seconds before I was pointedly and often out loud judged as some kind of Other. Even among kids in mental institutions where the rate of neuro-atypicality was higher, I only very occasionally connected with anyone and it was always their doing, others just either shunned me or found ways to do harm to me.

Weird thing is even though I heard all about being strange my whole life I always underestimated my strangeness. I rarely connected all the dots in others’ reactions to me. I knew I was different but since I couldn’t imagine how all the things I did looked to others, I assumed I was “normal enough” largely because of that and because I was always around myself and therefore found myself… not boring exactly, but like I was used to me. The same way I never knew my autistic brother stood out that much even though he did (although more in the stiff/nerdy way than the sensory/strange way, we are very different people).

But once I put the dots together? Passing doesn’t make sense. What happened was people saw every single thing I did and then since they didn’t know about autism they formed other explanations. So I was crazy, or on drugs, or wanted attention (why do so many people accuse others of wanting attention when the actions prompting it are entirely not focused on other people at all, while they don’t tell people that starting conversations is attention seeking even though it is???) or any explanation at all they could come up with. Sometimes several at once.

As I’ve discussed before, the drug assumption meant I have been both asked for (???) and offered pot, acid, shrooms, DMT, ketamine, speed, mescaline, harmaline, and assorted really obscure “natural” hallucinogens (I did not take more than three on that list, and only after being accused of it got me curious). This took no effort on my part, especially when attending a school so well known for drug use that it made a top five list of drug schools. All people saw was a strange girl dressed like a hippie who did lots of odd things, looked spaced out, and reacted to all kinds of sensory input in a very raw sort of way that often made me respond more to texture and pattern and color than to the socially agreed upon nature of the object. Plus I was fun to get stoned because it made me have even more sensory processing trouble and ratcheted up my anxiety so much that it was easy to manipulate me into doing amusing things like jumping out windows so people could laugh. (One of my support staff has another client who has a very severe cognitive
impairment. I was telling him about this and he told me she gets the exact same crap from her neighbors.)

Another thing that happens when people form these explanations is they begin picking up on irrelevant details that confirm their explanations while blocking out information that conflicts with their explanations. Because of my reputation for drug use, people would claim to smell marijuana coming out of my room whenever I burned incense (I never did that in my room). Have allergies that make your eyes red? Must be stoned. Have naturally large pupils? Must be on acid. Have trouble bathing or washing clothes? Drugs make people not care about that. Have fluctuations in your abilities? Must be based on when you’re high and when you’re not. You can’t win around this kind of fallacious thinking.

Kids who pass don’t get accused of being on drugs by everyone from children to teachers from the age of twelve or thirteen onward. Kids who pass as nerdy or “just gifted” don’t get ostracized and accused of being both on drugs and crazy, or sent to the counselor, when they go to a summer camp filled with nerds who are mostly classified as gifted. Most “just gifted and nerdy” kids thrive in those environments and tease the kids like me who are clearly odd for other reasons. My best friend met me in such a place when we were twelve after seeing me spinning by myself, asking someone who I was, and getting “That’s Amanda. She’s crazy.”

Nor do kids who are passing really well have it assured that they will be only given single rooms from a certain point on so as not to alarm their roommates with their strangeness (yes my roommates complained about rooming with a “crazy person” or “weirdo”). Even in mental institutions. (And kids who pass really well certainly don’t get singled out as strange in those places.) This is not passing. This is being flagrantly strange and having it bother people enough that they try to think up all kinds of reasons to explain it to themselves.

When most people explain things to themselves, odd things happen. They don’t see what you’re doing. They see their explanation. They see “crazy”, “high”, “stupid stunt”, or whatever they have explained things as in their minds. And if they have to have their expectations disturbed enough to explain things to themselves, then you are not passing.

I know a lot of people that things like this have happened to. Even people with purely physical impairments. A woman I know has muscular dystrophy and when she began hanging onto the walls for balance, people explained it away as attention seeking or anxiety induced. That’s the exact same sorts of explanations (with the addition of the ever present drug thing) that I got with a much lesser known autism-connected progressive motor impairment that caused me to freeze in place, be unable to cross certain barriers easily, or lose the ability to speak.

I once froze for a solid ten minutes, with (as I heard those around me noting) fixed dilated pupils pointed straight at a bright light, on a high school field trip. Nobody told my parents. People figured it was drugs or anxiety, and everyone was sort of pointedly avoiding the subject (and avoiding me) the rest of the trip, treating me like I had done something unspeakable. I frequently had the same thing happen in college and was said to be on drugs (never happened when I was actually on them). Happened in the psych system and was called psychotic or dissociative or just left unexplained. Happened around new agers and they insisted I was either astral projecting or somehow being very spiritual. The same thing happened to me at an autism conference, and someone with the same movement disorder told me the journal articles to send to my doctor. I did and he recognized it immediately and diagnosed me with that condition.

Is that “passing”? No. It’s “being passed off as”. It’s people seeing a thing, being uncomfortable, deciding on an explanation, and coming to remember the explanation more than the thing itself.

Similarly, now that that and other conditions have me using a powerchair full time, all the traits that had people who just saw me walking around thinking I was either autistic (if they knew anything about it) or intellectually disabled, the powerchair has become their explanation for all those traits. So now I’m back to being considered purely physically disabled by some people, which has led to overestimation rather than underestimation of my cognitive abilities.

I can do one particular thing throughout most of my life and have it explained in different ways depending on age, clothing (hippie clothes, school uniform, “regular” clothes, sloppy clothes), location (regular school, college, special ed, institution, apartment, at home with my parents), haircut (messy, combed, long, short, parted in different ways, nonexistent), range of deliberate facial expression (less or more limited due to the motor impairments), and a zillion other factors. But I’m the same person and my reasons for doing whatever it is have remained constant my whole life. I have seen kids doing things like eating paper or lying on the floor, and if they’re considered “gifted” then it’s eccentric or attention seeking, if they are considered druggies people figure it’s the drugs, and in institutions or special ed it’s because they don’t know better. But I bet the reasons for doing it are the same regardless.

But as someone who was a strange kid, and paid the price for being a strange kid, I am really uncomfortable with the concept of passing. Passing would be if I never did the things I listed in the first part of this except in private. Something I only ever managed in part. Having people constantly bugging you and making things up about you because you do these strange things is not passing. It’s having people pass things off as something else. It’s having teachers accuse you of drug abuse until everyone believes it and you become curious. It’s freezing up and having other kids laughing and jumping up and down on top of you and going “see she doesn’t feel it”. It’s being singled out for bullying even among other “gifted” kids and “crazy” kids. It’s having “crazy” or “druggie” or “does weird things for attention” be the first words people use about you when strangers ask who you are. It’s having even people you thought were your friends comment gleefully and frequently on these topics as if you are more a source of entertainment than a friend. It’s having people shake you, kick you, wave their hands in your face, and make loud guesses about what’s going on, every time you lose speech. It’s that one guy who likes to come up to you and tell you what “everyone’s saying” about you. But it’s definitely not, ever, even when doing your best acting, being treated like everyone else. Which is what passing would be. Passing has its own set of problems. But “passed off as” is not passing.

The other point of this post is that I’ve talked to even a lot of autistic people who assume that there’s only two general appearances that autistic kids can take: Sort of awkward and stiff and nerdy or dweeby, or else completely cut off from people and constantly rocking and doing other stuff like that. And while I sometimes did both of those sorts of things, I think I was usually something different from either stereotype. Much of what made me stand out and get both teased and “passed off as” various things, especially both before and after the few years I reined it in a bit, was the way I related to objects around me, and sometimes appeared zoned out. Most of which has to do with how I process information in the first place. And while I know many others who were and are like this, it seems like even many autistic people can’t resist having their imaginations constrained by the main couple stereotypes. And I almost never hear this particular appearance discussed. Lest this become a third stereotype, I should point out that there are lots and lots of different ways we can appear, and that a single person can appear different ways at different times. It’s just important to avoid stereotypes. They don’t help.

“Internet eugenics.”

The Trolls Among Us is an article about Internet trolls. Whose actions descend into the unethical and illegal more often than you might realize if you’ve never been the target of the more serious stuff these people engage in.

Weev, the troll who thought hacking the epilepsy site was immoral, is legendary among trolls. He is said to have jammed the cellphones of daughters of C.E.O.’s and demanded ransom from their fathers; he is also said to have trashed his enemies’ credit ratings. Better documented are his repeated assaults on LiveJournal, an online diary site where he himself maintains a personal blog. Working with a group of fellow hackers and trolls, he once obtained access to thousands of user accounts.

I first met Weev in an online chat room that I visited while staying at Fortuny’s house. “I hack, I ruin, I make piles of money,” he boasted. “I make people afraid for their lives.” On the phone that night, Weev displayed a misanthropy far harsher than Fortuny’s. “Trolling is basically Internet eugenics,” he said, his voice pitching up like a jet engine on the runway. “I want everyone off the Internet. Bloggers are filth. They need to be destroyed. Blogging gives the illusion of participation to a bunch of retards. . . . We need to put these people in the oven!”

What interests me about that quote is not that he spews forth the usual hate speech that trolls are famous for. It’s the extent he’s gone to harm other people for his own gain and amusement, far more than most people realize when dealing with the assorted insult-fests online:

Over a candlelit dinner of tuna sashimi, Weev asked if I would attribute his comments to Memphis Two, the handle he used to troll Kathy Sierra, a blogger. Inspired by her touchy response to online commenters, Weev said he “dropped docs” on Sierra, posting a fabricated narrative of her career alongside her real Social Security number and address. This was part of a larger trolling campaign against Sierra, one that culminated in death threats. Weev says he has access to hundreds of thousands of Social Security numbers. About a month later, he sent me mine.

Trolls have also done things like go onto epilepsy forums and post rapidly-flashing images. Which Weev claimed to be uncertain about the morality of. (But supporting genocide, disability hate speech, libel, hacking, extortion, and who knows what else? No problem.)

Some other interesting quotes from the article:

Is the effort to control what’s said always a form of censorship, or might certain rules be compatible with our notions of free speech?

One promising answer comes from the computer scientist Jon Postel, now known as “god of the Internet” for the influence he exercised over the emerging network. In 1981, he formulated what’s known as Postel’s Law: “Be conservative in what you do; be liberal in what you accept from others.”
[….] The human equivalent of this robustness is a combination of eloquence and tolerance — the spirit of good conversation. Trolls embody the opposite principle. They are liberal in what they do and conservative in what they construe as acceptable behavior from others. You, the troll says, are not worthy of my understanding; I, therefore, will do everything I can to confound you.

For what it’s worth, I do believe that rules are compatible with free speech. In my country, even the people who built freedom of speech into our highest set of laws believed that. I’m never too comfortable (in fact, I’m highly uncomfortable) with an absolutely rigid set of rules, because ethics can change drastically based on the situation and the rules can never be written in as detailed a way as to account for all situations. So maybe I’d say that limits are compatible with free speech, and I have no ethical problem at all with limiting what people can post here.

Such limits aren’t censorship (I don’t even control their ability to post anywhere else). In fact, I don’t think that there would be a whole lot of free speech on here if I allowed in every sociopath who tries to come on here and mess with people’s minds enough to scare them off. There’s an implicit threat in that kind of behavior, and that threat prevents people from speaking their minds. I also moderate posting to protect innocent posters from such people — people who post overly personal details about themselves or other people, such as telephone numbers and other such information, I’ll edit out, or else (if the thing seems to be written to me like a personal email to me) reply in email and delete the whole thing. Usually I note that I’ve edited it. One time a long-time poster tried to unknowingly point a stalker to information about their victim that I knew would be misused, and I sent him a long apologetic email in private and deleted his comment.

Basically, it goes back to what my school principal told the class during an assembly one day: “Often when children are sent to my office they say, ‘Well it’s a free country.’ And I say ‘Yeah it’s a free country, but that doesn’t mean you’re free to punch him in the face.'” Except that, apparently unlike my principal, I have no illusions about the USA being a free country (or the entirety of the Internet — it amazes me how many people talk about the “first Amendment rights” of Internet users in general, without apparently realizing that not all of the Internet is in the USA). Most people who’ve been on the wrong end of oppression in this country know that, and it’s even penetrating into the minds of the mostly-privileged lately. But that’s a whole different tangent.

I also don’t (anymore) allow people to come here and post the overused arguments designed to shut down attempts by disabled people to advocate for our rights. I’ve given a summary by Jim Sinclair of those arguments in my about page, and I’ll put it here as well. It’s from xyr History of ANI. After xe describes an attempt by some members of the Autism Society of America to spread false rumors about xyr not being autistic (even though some people on the ASA board had seen Jim’s records and testified under oath that xe was autistic), and even to attempt to interfere in xyr friendships with other autistic people, and notes that Donna Williams was getting the same kind of slander campaigns and harassment after her book was published, xe writes:

Only several years later, while researching the history of self-advocacy by disabled people (Sinclair, 1996), did I learn of the long history of similar opposition to attempts at self-advocacy and self-determination by people with a variety of disabilities (Kugelmass, 1951; Putnam, 1979; Williams & Shoultz, 1982; Van Cleve & Crouch, 1989; Lane, 1992; Shapiro, 1993; Christiansen & Barnartt, 1995; Dybwad & Bersani, 1996; Kennedy, 1996). Any attempt by a group of disempowered people to challenge the status quo–to dispute the presumption of their incompetence, to redefine themselves as equals of the empowered class, to assert independence and self-determination–has been met by remarkably similar efforts to discredit them. The discrediting tactics used most frequently are:

1) If at all possible, to deny that the persons mounting the challenge are really members of the group to which they claim membership. This tactic has been used against disability activists with learning disabilities and psychiatric disabilities as well as against autistic people. As people with these disabilities often look “normal” and the disabilities are all defined in terms of behavior rather than empirically measurable physical differences, many of us have been told that the very fact that we are able to express ourselves, object to the ways our freedom has been restricted or our rights violated, and demand change proves that we cannot truly be autistic, or learning disabled, or psychiatrically impaired.

2) If there is incontrovertible evidence that the activists are members of the affected group, to aver that they are rare exceptions who are so unlike typical members of the affected group that what they have to say is irrelevant to the group as a whole. Michael Kennedy, who obviously and indisputably has cerebral palsy, explains the destructive impact of this tactic:

When people tell me that I am “higher functioning” than the people they are talking about, I feel like they are telling me that I don’t have anything in common with other people with disabilities. It’s like they are putting me in a whole different category and saying that I don’t have any right to speak. It upsets me because I take it that they don’t want to give anyone else the opportunities I have been given, and that what I say can be ignored because they see me as more capable. It is a way of dividing us and putting down those who have more severe disabilities or who haven’t had the opportunities to experience different situations in life. (Kennedy, 1996)

3) If it is not possible to deny that the activists are authentic representatives of the affected group, to appeal to the very prejudices and stereotypes the activists are seeking to overturn, and use those prejudices and stereotypes to claim that the activists are incapable of fully understanding their situations and knowing what is best for them. Often this approach incorporates the belief that disabled people need to have their freedom restricted for their own good, to protect them from coming to harm through their inability to act in their own best interests.

These strategies to undermine credibility are not new, nor are they limited to situations involving disability. Frederick Douglass was a nineteenth-century African American who escaped from slavery in 1838 and became a well-known abolitionist writer and speaker. In his 1855 autobiography My Bondage and My Freedom, he recalled that at the beginning of his career speaking to white audiences about the evils of slavery, he was presented as something of a curiosity. Most anti-slavery lecturers where white; lecturers who were themselves fugitive slaves were a rarity. As the novelty wore off, people began to doubt that he had ever been a slave. He was suspected of being an impostor because he was too educated and too well-spoken to fit prevailing stereotypes about the ignorance of slaves. He also expressed frustration with white abolitionists’ demand that he confine his speeches to simply recounting his personal experiences of slavery, and allow white people to elaborate on what they meant: “Give us the facts, we will take care of the philosophy.” Eventually Douglass stopped working for white abolitionists and started his own anti-slavery publication.

So I won’t allow those tactics on here, provided that I notice them. And I offer no guarantees of perfection in noticing them. (Someone once noted in comments that some of my earlier posts and comments to them violated my current policy, and that’s correct. I don’t always go back and modify things, and even when I do, I can’t catch everything. I’m also human and therefore not remotely immune to the problem of sometimes being unable to live up to my own standards, and unable to notice this about myself.)

I also (although this is trickier because things can be subtle) have an anti-gossip policy and try to take that pretty seriously. As Laura Tisoncik noted, “Gossip is the enemy of all communities.” Same caveats apply though from the previous paragraph.

Even though that’s all quite an extensive list of things I don’t tend to allow, there are more things I do allow than things I don’t. I don’t post things from people who are trolling or engaging in other predatory activities online, but those tend to come in clumps and most of the time there’s almost nothing to delete. Then for a week there’ll be a ton of it, then nothing. I have only had to use the anti-gossip policy and the thing about disallowing tactics that shut down self-advocacy discussions, on a handful of occasions. The vast majority of the things I delete are when people unintentionally post private information such as phone numbers and street addresses. That’s unless you count spam.

I do allow disagreement, and not just calm disagreement but most angry disagreements too. I don’t see anything wrong with disagreement within certain limits. (I’m obviously not going to post something where someone’s saying that nobody here is autistic enough to involve ourselves in autistic self-advocacy.) I don’t see anything wrong with people being pissed off at me. Sometimes if people don’t yell at me I don’t know I’m doing anything wrong. I can sometimes get defensive and irritated in response (some of my friends might say that’s an understatement at times), but that’s my problem, not theirs. Frankly I get much less nervous around people who are willing to call me on stuff, than people who act like I can do no wrong. With the second group of people I always wonder what’s going to happen when the pedestal drops, and what would happen to my ego if I acted like these people were accurate in their assessment of me.

And if your post doesn’t show up — most of the time that means it’s fallen into my spamtrap, which gets overzealous. My spamtrap also likes some people more than others for some reason, as Andrea Shettle knows way too well by now. I try to search through it for people’s stuff, but it gets eaten a lot. One time there was some minor drama because someone who was pissed off at me already (see previous paragraph) thought I’d deleted his posts because of that, but it turned out they were in my spamtrap all along.

Anyway, basically… there are predators online ranging from people who engage in mild bullying to people who try to systematically destroy people either mentally or physically, and I’m not going to decide in the name of free speech to give them a space to comment here. I think such people do more to stifle free speech than to promote it, and I no more allow them on my blog than I would allow them in my front door.

Which might explain why they instead periodically hack into our server.

Back to the article:

Fortuny calls himself “a normal person who does insane things on the Internet,” and the scene at dinner later on the first day we spent together was exceedingly normal, with Fortuny, his roommate Charles and his longtime friend Zach trading stories at a sushi restaurant nearby over sake and happy-hour gyoza.

I wouldn’t call the things he does insane. I would call them cruel. Cruelty is in many ways normal, and often tolerated or even encouraged. And people who get labeled insane are no more likely to be cruel than anyone else, but are far more likely to be the victims of cruelty. But the wonders of ableism make ‘insanity’ a synonym for cruelty, and ‘retard’ the ultimate in dehumanization and the ultimate excuse for talk about eugenics and genocide.

Plus, even most sociopaths (who I don’t consider ‘insane’, but I do consider very very cruel) are said to look normal, even charming. Not all do, but many do. I’m not saying all trolls are sociopaths, but their behavior can be identical, even if they’re just ‘normal’ people spurred on by some unholy union between the dehumanization of the Internet, the dynamics of groupthink, and societies that more or less encourage cruel people to flourish. (And unlike a lot of people, I don’t consider ‘sociopath’ a medical category, just a convenient and recognizable word for people who are consistently and alarmingly unfettered by conscience.)

I’ve seen the websites (ones not even mentioned in the article) of organized trolls before, and they read just like a horrible playground conversation. These people create sites that openly state their intent is to mock people and to laugh about it. And as evidenced by the conversations in the newspaper article, they don’t care what damage they do to their victims. Some of them rationalize it, others are just happily and unashamedly nasty.

But not all trolls are open about it. Many attempt to appear earnest, even creating entire false personas to drag people in emotionally, either to obtain private information for harassment or blackmail purposes, or to convince naive people to defend them in arguments. Others don’t find that worth the hassle and create sockpuppets instead.

What’s alarming are the things they use (if anything) to justify their behavior:

As Fortuny picked up his cat and settled into an Eames-style chair, I asked whether trolling hurt people. “I’m not going to sit here and say, ‘Oh, God, please forgive me!’ so someone can feel better,” Fortuny said, his calm voice momentarily rising. The cat lay purring in his lap. “Am I the bad guy? Am I the big horrible person who shattered someone’s life with some information? No! This is life. Welcome to life. Everyone goes through it. I’ve been through horrible stuff, too.”

[…]

[someone said that trolling the epilepsy forum with flashing lights was crossing a line]

Fortuny disagreed. In his mind, subjecting epileptic users to flashing lights was justified. “Hacks like this tell you to watch out by hitting you with a baseball bat,” he told me. “Demonstrating these kinds of exploits is usually the only way to get them fixed.”

“So the message is ‘buy a helmet,’ and the medium is a bat to the head?” I asked.

“No, it’s like a pitcher telling a batter to put on his helmet by beaning him from the mound. If you have this disease and you’re on the Internet, you need to take precautions.” A few days later, he wrote and posted a guide to safe Web surfing for epileptics.

[…]

The willingness of trolling “victims” to be hurt by words, he argued, makes them complicit, and trolling will end as soon as we all get over it.

These are the same excuses used by people who fail to do anything about bullying in schools, and the same excuses used by many child abusers towards their victims: It’ll toughen them up enough to be prepared for life’s cruelties.

But they’re BS excuses. Just because the world is a cruel place doesn’t mean you have to be. The answer to cruelty isn’t more cruelty. I’ve been to hell and back, and I’ve learned from those who are or were cruel to me, but I’ve learned even more from those who taught me how to deal with cruel situations than those who caused the cruel situations in the first place. (Of course, nobody is black and white, and in a couple cases people who were cruel to me at one point are still people I’m on good terms with. But they’re also not cruel anymore.)

I wrote a song several years ago to people stuck in that mentality. I’ve posted it before but it bears repeating.

They say life on a battlefield
Is sink or swim
And only the strong survive

And those of us who survived
We survived
And we say to the next
As they’re standing in line
“We’ve done our time,
now it’s your turn”

We learned our lesson too well
We’ve taken our hell and passed it on
“It will make you strong,”
We say as we turn away

How easy is it to forget
The ones who walked with us, talked with us
The ones we fought alongside
They didn’t survive, they fell

They were as strong as we
But we can’t see this to be so
For it would show how little power
We had in the hour that they died

And we honor our fallen comrades
With a rousing inspirational speech
“You are our successors,” we say
“And there’s no room to be weak
Because life on a battlefield
Is sink or swim
And only the strong survive”

And those of us who survived
We survived
And we say to the next
As they’re standing in line
“We’ve done our time
Now it’s your turn”

We’ve learned our lesson too well
We’ve taken our hell
And passed it on
“It will make you strong,”
We say as we turn away

And how easy it is to forget
The ones who walked with us, talked with us
The ones we fought alongside
They didn’t survive, they fell
Consumed by the hell
We recreate
In the name of memory

Or in other words:

The problem with sink-or-swim approaches is that some people sink. And it would completely dishonor the memories of people who have died as a result of cruelty, to perpetuate the very same cruelty that killed them. To claim it makes people strong makes it sound as if these people didn’t exist, or were weaker than people who survived, even if it’s only luck that determined some people’s survival over others. And I refuse to participate in, or glorify, practices that can and do ultimately kill people and then degrade even their memories. Like so-called “Internet eugenics”.

And like they said earlier in the article — it’s the opposite of a properly-functioning society. They want the leeway to do anything they want, but give others no leeway at all. No matter how much they dress it up, there’s no ethical justification for that, and I suspect they know it.

Edited to add: I just remembered something I hadn’t thought about for a long time.

When I was nineteen I had a different autism site. I was also at that age very vulnerable, and very bad at hiding my vulnerability. (Which is one among several reasons I eventually took it down, another being that I wasn’t at the time satisfied that half the stuff I was posting was really stuff I thought, or just more attempts to conform to a pattern I thought I ought to conform to.) The stuff from it I continued to think might be useful (whether I continued to fully agree with it or not), I moved to the autistics.org library.

Anyway, I started getting these weird emails. One of them gave me detailed instructions for killing myself, and said that if I didn’t do it they’d finish the job for me. My family was alarmed and contacted the FBI. But back then there wasn’t even a pretence of caring about cyberharassment, and my parents were just told that if it was online it wasn’t a problem. (Unfortunately, by now the world has learned differently from experience.)

Eventually the problem was found out, can’t remember if it was by me or by someone else — my website address had been posted to a trolling site. The section about changeling mythology, Otherkin (a community of people who either believe themselves to be non-human or roleplay themselves to be non-human, depending), and my own longstanding connection to and interest in those topics (especially the idea of being an elf), had been pointed out in particular.

There was a lot of undisguised mockery in the ensuing discussion, to be sure. But my main reason for editing this post to add this to it, is one of the comments that was given on that site, the one I to this day find the most indefensible and the most descriptive of the fact that many trolls know exactly what they are doing. It read something like the following:

“She looks vulnerable. Let’s go mess with her mind.”

For Sharisa, and anyone else facing attempts at erasure.

I wrote a version of this once for Sharisa Kochmeister, who was dealing with people trying to publicly erase her existence. But when I write it now, it is intended for anyone dealing with such attempts at erasure. I am writing it because it gets right down to the core of the problem, rather than getting lost in details thrown around by those attempting the erasing, the ones they will try to distract a person with. I am writing it because I know several people right now, Sharisa included, who might need to remember this:

Remember that when they attack someone you are not, they are not attacking you. They are just attacking something they think is you, an illusion in their heads.

It can harm you, because it can make people mistake the illusion for you, and they can act badly towards you based on that. And there is real danger, and I don’t want to downplay that.

But at the same time, they are hacking and biting and tearing and clawing away at a person who doesn’t even exist, someone they dreamed up in their minds. In the larger scheme of things, they can’t touch you, because they can’t even perceive you as you are.

Hate can’t understand love. Hate isn’t an action, it’s a state of mind. People in that state of mind are more thoroughly harmed by the hate they envelop themselves in, than the people they try to attack. Hate pulls a person away from reality. You have to be able to love in order to see who someone really is. A person enveloped in hate can’t do that. So all they are doing is ripping at all sorts of illusions they build up to surround you. You will remain standing even if they shred those to pieces, even if in fear you mistake those pieces for you at times.

I know how hard it is. I also know that when you go through things like this you often find out you’re stronger than you thought you were. Because any strength you have comes from something that nobody who hates you (and I tend to think attempted erasure of a person’s existence is the ultimate hate) can touch or even see.

It comes from the fact that you are a real person and nothing anyone does can change that. You don’t even have to try to exist in order to exist, you just do it automatically. Hate on the other hand takes constant effort, to push oneself away from reality, and to fight against what does exist. Hate will wear a person out. Simple existence will not.

I hope for their sake that the people attacking you learn how destructive hatred is to the person stuck in it. It can happen. I have seen people make that change, it is hard but their lives and the lives of those around them are better for it. But even if they don’t, I know that you will be okay, because you will still be there. You are not the imaginary person they are ripping apart, half plaything and half punching bag, and you are not just words on a screen or an example or symbol of something people have imagined up in their heads. And you never will be. You exist, you are a real person, and nothing can change that.

On a similar topic, you might want to read Cyber Bully by Donna Williams, which contains the excellent advice:

I don’t know where they get the time. It must rob their own families of quality time. And how can they escape that head space of militancy and hatred to really be accessible as parents, friends, brothers, sisters. In the end, their lives are suffering and they don’t even know it. They put so much passion into their cause in going after people, that it gets like a drug to them, and they are probably as available to their own families as an addict is when having a primary relationship with drugs. So as much as its really scary to find anyone pathologically fixating on me, in the end, whatever discomfort they cause me, I know there’s must be greater. Addiction is incredibly hard to live with and when these people think their addiction is their selfhood, they are far from any place of hope. Number 1 rule, no matter how personal they make it, don’t take it personally.