Almost Alike: A Medical Cautionary Tale

Medical bracelet that says “Adrenal Insufficiency”.

I’ve been thinking about medical stuff a lot lately, so apologies if my posts tend towards the medical for a little while.  It’s what happens when you suddenly realize how lucky you are to be alive, and how close you came to death.  My father’s cancer has me thinking about life and death and medical care a lot, too.

In my dealings with doctors, I have found that they like the solutions to their problems to be neat and tidy.  In particular, they want there to be one diagnosis that explains all the symptoms they’re observing.  They want their patient to have that one diagnosis, and if their patient shows signs of more than one thing, it fouls up everything the doctor wants.

Case in point:  I had this neurologist at the headache clinic.  I told him that they strongly suspected my mother of having myasthenia gravis, or hereditary myasthenia.  Both are neuromuscular junction diseases that cause specific muscles to wear out quickly as you use them.  So for instance my eyes start out tracking the same object fairly well, but as time goes on, they drift outwards leaving me seeing double.  I had told my neurologist all about this, and about other muscular problems I’d been having.

I don’t remember why myasthenia came up, but I told him I was going to start on Mestinon, a medication that treats myasthenia.  His response was swift and a little annoyed:  “It’s not going to do anything.  I don’t think you have myasthenia.” 

“Why not?”

“Because people with myasthenia have trouble with specific muscle weakness. You have generalized weakness.  It’s not the same thing.”

He explained it as if I didn’t know this.  But he also explained it as if I hadn’t told him time and time again about the specific weakness, that was separate from the generalized weakness.  As if I hadn’t told him things were more complicated than he was expecting.

He offered to run an EMG but told me the results would be negative because “You just don’t have myasthenia gravis.”  I declined the testing.  I don’t like to be tested under circumstances where the doctor has already determined what the results are going to be.  Plus, I’d just been through an invasive procedure that left me in horrible pain for weeks, and I didn’t feel like being poked and prodded again.

But I did try the Mestinon, and it did make a difference.  It was subtle at first.  I could walk around my apartment without falling.  My eyes tracked things better, and for longer, before the double vision kicked in.  It was things like that.  The more Mestinon we added, the better those things got.  So it seemed my headache doctor was wrong, and there was something real about the effects of the Mestinon.

But in other areas, I was getting weaker.  In fact, as far as I could tell, I was dying.  I was hesitant to tell anyone this fact, because it felt like a fairly dramatic thing to announce.  But I’d known terminally ill people who had more energy than I had at times.  And I have instincts that tell me when something is going badly wrong.  Something was going badly wrong, and it went along with that more generalized muscle weakness.

I’ve already told the story of how I got diagnosed with severe secondary adrenal insufficiency.  And that’s what happened.  They found no measurable evidence of cortisol or ACTH in my blood.  When they flooded me with ACTH, I made cortisol, but not as much as expected.  Meaning my pituitary gland is not making enough ACTH to tell my adrenal glands to make cortisol.  And this was the reason for, among many, many other symptoms, my severe muscle weakness that affected my entire body.

I went into treatment for adrenal insufficiency and everything seemed to be looking up.  No longer bedridden.  No longer required to use a wheelchair for anything.  Not that I minded these things so much when they were happening, but it’s nice to be able to get up and walk up and down a flight of stairs when you want to.  It feels good to be able to exercise, after six years of bedrest.  Dexamethasone makes me feel alive again, instead of waiting for the next infection to kill me.   I feel strong, and sturdy, and robust, in a way I haven’t in years, and my friends sense the same thing about me.

The only problem?  Not everything went away.  I still had weakness in specific muscles.  I’d been referred to a new neurologist at the same time they were testing my cortisol.  This neurologist never pretended he had any answers.  He was simple and methodical in the way he worked.  He would come up with a list of every possibility, no matter how remote, and then he would run tests for every possibility.  This made me trust him in a way that I didn’t trust my migraine neurologist.  So I let him do any test he wanted to do.

Many of the tests, he came in and did them himself, which is unusual for a doctor.  Usually they delegate that stuff.  He did a regular EMG that turned up nothing, and I thought “See, my mother didn’t have an abnormal EMG either, so whatever we have isn’t going to show up on tests.”  Neither of us showed up as having the antibodies, either.  I began to think this was going to be one of those things that we never solved.

Then he called me in for something he called a single fiber EMG.  He was going to stick a wire into my forehead and measure something about the muscles.  I remember that on that day I had a lot of trouble even holding my head up on one side, and that I was seeing double.  He stuck the wires in, made me raise my eyebrows and move my eyes around.  There were a lot of electrical noises.

At the end of the test, he told me he wanted to see me as soon as possible because the result was abnormal.  The muscles were firing asynchronously. 

I didn’t know what that meant, but a week later I was in his office being told that I probably did have a neuromuscular junction disease after all.  Probably myasthenia gravis, possibly a much rarer hereditary form of myasthenia.

And to think that literally a couple weeks before I got the single-fiber EMG, my regular doctor and I had been discussing whether I really needed to be on Mestinon anymore.  We thought maybe my only real problem had been the adrenal insufficiency all along, and that my response to Mestinon might have been some kind of placebo effect (even though I don’t seem very prone to that effect even when I want to be).  Even I was starting to fall prey to that idea that a diagnosis is just one thing.

Right now, we don’t really know what exactly my diagnosis is.  We know for certain that I have secondary adrenal insufficiency.  And we are pretty certain that I have a neuromuscular junction disorder, and the most common one of those is myasthenia gravis.  (I’m just going to refer to it as myasthenia gravis for the rest of this.  Because it’s shorter than saying “the thing we think is myasthenia gravis maybe”.)

But the important thing — the thing a lot of doctors miss — is that there is not one diagnosis here.  There are at least two diagnoses, possibly more.  This is not the first time, and it won’t be the last time, that I’ve had doctors miss something fairly obvious because they thought that the simplest explanation is always a single diagnosis. 

I still remember back when I was dealing with three different diagnoses that affected movement in different ways:  Adrenal insufficiency, myasthenia gravis, and autistic catatonia.  And any time we’d try to bring up a symptom of one of them with a doctor, they’d bring up a “contradictory” symptom from a different one of them, and that would mean that… it couldn’t be myasthenia gravis, because sometimes I froze stiff instead of limp, because I also had autistic catatonia.   And it went on like that for years, where every condition I had was ‘contradicted’ by some other condition, so many of the doctors refused to see the complexity of the situation.

Sometimes that resulted in situations that were almost funny, but other times it could turn deadly.  There was a time I was hospitalized for aspiration pneumonia connected to gastroparesis, and my doctor refused to treat me for anything other than the pneumonia.  So I had collapsed in my bed after vomiting so much that all the muscles involved had gone limp and I was starting to have trouble breathing.  In retrospect we think it was the start of an adrenal or myasthenia crisis, and that I belonged in the ICU.  But at the time, the hospitalist simply refused to treat anything that wasn’t pneumonia.  So I had to lie there totally immobilized, delirious, and hallucinating, wondering whether I was going to survive, for days on end.  All because a doctor was only willing to think about one condition at a time.

Over the years, I’ve picked up an impressive collection of diagnoses.  Many of them are based on symptoms and my response to treatments.  But some of them are based on hard-core medical tests like high-resolution CT scans — things you can’t confuse for anything other than what they are.  I’m going to list the ones that  were diagnosed by those hard-core medical tests, and understand I’m listing them here for a reason:

• Bronchiectasis (high-resolution CT scan)
• Frequent bowel obstructions (x-ray)
• Central sleep apnea (sleep study)
• Obstructive sleep apnea (sleep study)
• Early-onset gallbladder disease (ultrasound)
• Exotropia (eye exam)
• Gastroparesis (gastric emptying scan)
• GERD – reflux (barium swallow)
• Esophageal motility problems (barium swallow)
• Dysphagia (barium swallow)
• High cholesterol (blood test)
• Hypermobility syndrome (Brighton criteria)
• Myasthenia gravis or related condition (single fiber EMG)
• Secondary adrenal insufficiency (cortisol test, ACTH test, ACTH stimulation test)
• Urinary retention with spastic urethra (urodynamic testing)

So this is fifteen different conditions right here, that there is no possible way that I don’t have them.  They’ve been tested for, the tests are valid, there’s nothing unusual about the tests I was given, they exist.  I’m diagnosed with a lot of other conditions, but even if we pretended that those conditions turned out to be misdiagnosed because some of the diagnosis was subjective… I’m still left with fifteen conditions here that are very much real.  Some of them are more serious than others.  But many of them are difficult and complex both on their own and in combination with each other.  (Also, many of them went years misdiagnosed because doctors refused to even test me for them, believing that a person with a developmental disability or a psych history couldn’t possibly be telling the truth about their own symptoms.)

Now imagine you’re a doctor, and I’ve walked in your door, off the street, with no medical history.  And I’ve got the symptoms of all of these fifteen conditions.  Some of the symptoms are severe enough to be life-threatening.  And your very first instinct is to try to find one condition that accounts for all of these symptoms.  You’re going to be looking for a very long time, and you’re going to be lucky if I don’t die before you figure it out.

Of course, it’s still possible that there really is one condition that explains all this.  Or at least, a small handful of conditions.  There are many genetic conditions that can cause problems all over your body, and they can be notoriously difficult to pin down.  But for the moment, we’ve had to diagnose all of these things separately in order to get a handle on how to treat them. 

It may be there’s some genetic condition that causes neuropathy (my mother and I both have symptoms of autonomic and sensory neuropathy), which could in turn cause the gastroparesis and esophageal motility problems (and dysphagia, and other things that aren’t listed above), just as one example.  But right now we don’t have that information.  Right now we just know I have gastroparesis, and that it doesn’t play well with reflux and bronchiectasis, and that if I hadn’t gotten a feeding tube in time it probably would’ve killed me.  There could also be something behind the adrenal insufficiency, but that damn near did kill me a number of times before we even knew enough about it to put me on dexamethasone. 

And that’s why it’s important that medical professionals not restrict themselves to a single diagnosis when they’re looking at what’s going wrong with someone.  If you see symptoms that look contradictory, then you ought to be wondering if you’re looking at more than one condition at once.

If there’s one thing I have noticed, having been in and out of hospitals for a long, long time… it’s that my roommates are usually people like me.  They’re people with multiple medical conditions all at once.  They’re not textbook illustrations of a single condition in all its pristine glory.  They’re a mess, just like me.  Like my roommate who had both Lesch-Nyhan and myasthenia gravis (and was a woman, which is rare for someone with Lesch-Nyhan in the first place).  They really treated her like crap, too — they wouldn’t believe a word she said about herself, unless they could verify it from some outside source, which they always did, but still never trusted her.  Sometimes I heard her crying after they left.  At any rate, I can’t remember a single hospital roommate who had only one condition, unless they were in there for a routine surgery.

Which tells me that those of us who end up in hospitals on a regular basis, at least, are people with complicated medical histories.  Not people who just have one simple thing that can be figured out.  Which means that no hospitalist should ever do what one of mine did and say “I’m only treating the pneumonia, nothing else matters, no matter how bad things get.”  I’m really passionate about this issue because I’ve seen how close to death I’ve come, how many times, just because everyone wanted my body to be simpler than it was.

Maybe the problem is that we train doctors too much on textbooks, and on the people who most resemble textbooks.  We don’t want to confuse them with too much, all at once.  So they grow to look for the one explanation that will explain it all, instead of the fifteen or more explanations that will explain it all.  And in the meantime, their patient could die while they’re waiting to get properly diagnosed.

And that’s the part that worries me.  I’m very lucky to be alive.  My doctors know I’m very lucky to be alive.  And I have a pretty amazing team of doctors.  I have a great GP, a great pulmonologist, a great neurologist, and a great endocrinologist.  These are doctors who are willing to listen to me when I know more than they do, but also willing to argue with me when they know more than I do, it’s the perfect combination. 

My GP has been here since I moved to Vermont, and he is known in the area as one of the best doctors around.  We have our disagreements, but he always explains his decisions to me, and I always explain my decisions to him.  We respect each other and that makes everything work.  He has done his best to stand up for me in situations where my social skills have caused problems with other doctors.

My pulmonologist is amazing.  She always anticipates situations where I’m going to face discrimination, and she’s always ready.  When she knew I was heading for a really bad pneumonia, she had my lungs CAT scanned to prove the pneumonia was there, because she knew nothing less than that would get me admitted to the hospital.  And even then it took all she and my GP could do to get me into the hospital and keep me there long enough to get me a feeding tube.

I’m new to my endocrinologist, but he’s clearly really good too.  He’s been helping me through the first stages of being diagnosed with adrenal insufficiency, including things as difficult as when to stress-dose and how much.  He’s given me the confidence to figure out on my own the amount of steroids I need to give myself in physically or emotionally stressful situations.  That’s a key skill you have to have to avoid adrenal crisis, and I think I’ve finally got the hang of it.

My neurologist is also new, but he’s clearly highly competent.  There’s nothing flashy about him or anything.  It’s not like he has some kind of flashy swagger like you see on TV shows.  He’s very quiet.  What he has is the ability to be mind-bogglingly thorough.  He listens to everything you have to say, he asks very careful questions, and he takes very careful notes.  Then he thinks up every possible condition that could result in the symptoms you have, no matter how rare or improbable it seems.  Then he figures out which ones are the most important to test for first.  And then he pretty much tests you for everything.  If there were two words for him, it would be methodical and thorough.  And it’s paid off — we now know I have something similar to myasthenia gravis, even though all the signs were pointing away from it for awhile.  Like my GP, he’s one of those doctors that other doctors hold in very high regard.  I can tell by the way they talk about him.

I wanted to make a point of talking about these doctors, because the point of this post is not to bash the medical profession.  These are people who have saved my life.  These are people I have built a relationship with over the years, or am in the course of building a relationship with now.  I’ve had plenty of truly awful doctors, but I’ve had a surprising number of truly great ones as well.  Most are somewhere in the middle.  But the great ones are the ones I owe my life to, many times over.  They have done things for me that, I am sure, they have never even told me about, and probably never will.

But all doctors, no matter how great, need a reminder that medical conditions don’t come in neat, orderly packages the way the textbooks make them sound.  Most disabled people and people with chronic illnesses have multiple conditions, not just one.  Often, these conditions have symptoms that can seem to contradict each other.  And even when there’s one overarching condition that causes all of them, there’s a good chance you’re going to need to find all the smaller conditions before you can put the puzzle together.  Many times, finding all the smaller conditions is a matter of life and death.  People simply can’t wait around to find the perfect most elegant answer when we’re going into adrenal crisis or myasthenia crisis on a regular basis.  Maybe there’s a reason I have adrenal insufficiency, and maybe one day they’ll find it, but for now I need to be on dexamethasone so I don’t die in the meantime.

This is how I feel when I read a lot of posts about the Judge Rotenberg Center.

Close the Judge Rotenberg Center.  For the love of everything holy, close the Judge Rotenberg Center.  Stomp it into the ground and dance on its fucking ashes.

But.

You won’t be done.

You’ll just have eliminated the most obvious of a huge number of places that torture and abuse their patients in the name of treatment.

Skin shock is showy and scary and it makes a good story and it makes it easy to see what is hurting people.

But people can be hurt just as bad or worse without it.

People can be hurt just as bad or worse by places that don’t brag about the torture they inflict on their patients.

People can be hurt just as bad or worse in the institutions everyone loves to love because they’re so beautiful, they have such wonderful grounds, they seem so loving.

You can’t understand, maybe, why this is true.

You think, maybe, that abuse, trauma, PTSD, CPTSD, can be measured in volts.

It can’t.

You think, maybe, that the destruction of lives is proportional to the visible destruction heaped on the body.

It isn’t.

It’s so much more complicated.

I have a friend who gets really upset every time some over-the-top institutional horror story makes the news.  So do I, for that matter.

One part of it is because, obviously, it’s horrible, and we’ve both lived through horrible things.  She’s been to both state and private institutions (and found private ones worse, by the way, so much for stereotypes).  I’ve been to private institutions and private residential treatment facilities and what I like to call ‘community institutionalization’… too hard o explain in such a short space.

I spent most of my teen years in the psych system (and to some degree was exposed before that) and sometimes in mixed psych/DD settings, and pretty much all of my adulthood in the DD system.  I have physical disabilities that could easily put me in a nursing home, and developmental disabilities that qualify me for admission to an ICF/MR.  Staying free takes up more of my energy than I’d like.

I’ve been abused and tortured and traumatized and almost-killed in all kinds of settings, inpatient and outpatient.

At one time in my life, with severe self-injury, I’d have made an ideal candidate for the Judge Rotenberg Center.  I am not somehow different from people who go there.  You’d be surprised at the people who go there and how not-different they are from many people you’d imagine would never go there.

(That’s true of all institutions.  The people who live inside them, and outside of them, are identical in every way.  The only difference is how the support takes place.  When it’s support at all and not just hell on earth.)

Anyway.

What I want to say is.

One reason that my friend and I get upset by these stories is because we’ve lived through some horror stories of our own.

Another reason that we get upset by these stories is this fear we have, that we don’t think is irrational at all.

We fear that when people focus on the outrageous, the flamboyantly awful, then they won’t see the way the outright ordinary, even the seemingly wonderful, can do the same degree of harm, or worse.

The worst harm in institutions is, by the testimony of many, many inmates, not just the physical torture that takes place in some places — sometimes above-board, sometimes secretly.   Often it’s things you can’t even name.  Those things are happening in the JRC too.  Those things hurt people there as much as the torture does.  Nobody is doing a huge campaign to shut down those things.

Many people, if the JRC is closed, will simply be sent to other institutions.

They will then be told that they are lucky and that those other institutions are better.

They may come to believe those other institutions are better.

Those other institutions may actually be better.  But they may not be.  It may just be that the badness has seeped down deep into some underground place where you can’t count it, can’t name it, can’t even describe it, and therefore it…. isn’t there.

And they will continue to get hurt by that.  They may not realize they’re getting hurt by that.  They may attribute the hurt to themselves, to their mental illness, to anything but the environment that is causing or contributing to it.

And that hurt may be harder to recover from than the JRC.

How do I know this?  Because while I was not in the JRC, I was in mental institutions that physically tortured me (not with skin-shock), and was then moved to a ‘better’ place that tortured me in harder-to-explain ways, and hurt me in deeper places, and I learned to say and believe how ‘better’ they were while living how worse they were deep down.  I still live with how worse they were.

And I know many other people who have the same story to tell.

And I know that unlike me, many people who live at the JRC won’t be able to escape the institutional system the way I was able to.  My situation was unique to me.  I didn’t get out because I was better off disability-wise than others, I got out because I was in a particular, unique set of circumstances.  The difference between people on the inside and people on the outside is not their disability.

But once you’re in a long-term institution, it’s harder to get out.  I was lucky, I was usually in a string of short-term institutions (even if I spent longer time periods in them than other people there), then when I was in a longer-term one, my residential facility closed and it became useful to them to decide I was recovered enough to leave, and to “transition” me to a “less restrictive environment”.  Which was still a hellish environment, mind you, but more chance of freedom, there, too.  And I had people around me savvy enough to advise me how to take the chances I had.

And most of the people in the JRC won’t be leaving to freedom, if it gets closed.  They’ll go to other institutions.  And however grateful they are to be out of the JRC, they will get hurt in those new places.  Because that’s what institutions do.  Invariably.  You don’t have to know you’re hurt to get hurt there.  You don’t have to understand how deep the hurt goes, to get hurt there.  You just have to be there.  And you’re often the last person to know how deep it goes, right down to the level of your self and identity and everything important to you.  You can get turned inside out without anyone laying a finger on you.

Nobody will ever be able to pinpoint the institution that inflicts the worst of this sort of damage on its inmates, because this sort of damage is, by its very nature, secretive, even from the person it’s being inflicted upon.  And because nobody will be able to pinpoint the worst of it, there will never be a massive, targeted, decades-long campaign to close the worst of these institutions.  Anonymous will never catch on and take part.  The world will not be outraged by the damage inflicted, no matter how devastating.

And if the people damaged by these institutions show that they are grievously psychologically injured by these institutions, people won’t connect it to the institutions.  They’ll connect it to the nebulous concept of ‘mental illness’, and quite possibly try to construct more of the exact same kind of institutions to deal with it.  Nobody will notice that the ‘increased mental illness’ is correlated with the institutions themselves.  Nobody ever does notice.

Nobody catalogues this kind of damage.  Few people study it.  Few people understand it.  Few people can see when and where it is happening.  Few people can understand the damage in the first place.  Most people who describe the damage won’t be believed.

Worse than merely not being believed:

When we describe the damage inflicted upon us, we are invariably described as ungrateful for the advantages that we had in not being in “a place like the Judge Rotenberg Center”, or not being in “a state institution”, or not being in a place that the world universally recognizes as horrible.  Because some of the worst damage is inflicted on us in places that other people see as wonderful.

They will ignore the abundant testimonials by ex-patients who have experienced a wide variety of institutions.  There are tons and tons of people who have been to both state and private institutions and found the private ones immeasurably more damaging, because the extra funding means extra ability for staff to mess with the heads of the inmates.  There are tons and tons of people who have been to both state institutions and group homes and found the group homes immeasurably worse.  There are tons and tons of people who have been to both locked private traditional-institutions, and unlocked residential facilities and group homes, and found the residential facilities and group homes immeasurably worse.  There are tons and tons of people who have been physically tortured at one institution, moved to another institution where no apparent physical torture was present and found the second institution immeasurably worse.  There are people who have been moved from ‘bad’ institutions everyone loves to hate, to wonderful paradise-like ‘intentional communities’ where they had, in the eyes of others, everything they could possibly want, and described how much more horrible the intentional communities were, the ones formed with the best intentions of parents and staff.

People ignore this.

People ignore this completely.

No, worse.

People ignore this and they utterly disparage any current or former inmate who says these things.  They say we don’t understand what we’re talking about.  They say we have no vision.  They say we have no comprehension. They say we don’t understand how good we have it.

And it’s even worse for people who have only been to the ‘better’ (in the eyes of the public) institutions, and complain about how awful they are.  They’re told that they don’t understand how good they have it, only much worse.  And they are told they should be grateful for what they had, that they wouldn’t last a day in a ‘real institution’.

Hell, I’ve been told I haven’t been in a ‘real institution’ just because I was in locked, private, short-stay institutions a lot of the time.  (And one private long-stay institution that was on a ranch in the country so it didn’t count as an institution, somehow.)  Never mind that, at the time, I was referred to as institutionalized by everyone in the system, including people in these institutions… apparently it’s not an institution until it’s a big-campus state institution.

So people who’ve only been in much fancier, much ‘better’ institutions than I’ve ever set foot in, are told this only ten times worse than anything I’ve ever gotten for talking about my experiences.  Especially if they’ve been in the pseudo-utopian farm communities, or the ‘intentional communities’, or things like Camphill, which are all billed as not institutional somehow even though they totally are.  You can’t change an institution by changing the shape of the building and slapping on a new coat of paint.

Anyway.

People who have been through the worst kinds of hell that institutions can provide are not believed, because the worst kinds of hell that institutions can provide are not things that people outside of institutions can understand in any way.  People outside of institutions want the blood and gore and skin shocks to prove a place is horrible.  They don’t want to understand that there are things more horrible than any of that.  They don’t want to understand.  They just don’t want to understand.

And people in institutions often don’t want to understand either.  I didn’t want to understand what was happening to me.  I wanted to believe that now that I wasn’t being tied down and tortured on a daily basis, then I was free.  I wanted to believe that really badly.  You have a vested interest in believing you’re someplace better now, that things will get better.  Sometimes believing things are better is your only defense against how awful things are.

But once I really got out, and I had to deal with the intense emotional and psychological injury I’d been done by all of these places, the truth gradually began to dawn on me.  It’s easier to heal from physical wounds than it is from psychological and emotional wounds.  It’s easier to heal from the obvious horrors than the hidden horrors that lurk behind the scenes, turning you inside out and upside down, piece by piece, one bit at a time.  You can heal, but I can tell you that it’s not being tied down, not physical or sexual assault, not even the horrifying restraint practices I sometimes endured, not the physical pain, that continues to haunt me.  I mean, it does, to some degree.  Things like that always do.  But there are things that have damaged me deeper, in ways I can’t even articulate.

And my friends and I, when we see coverage like this, we’re so afraid.

We’re afraid of the ‘better’ institutions.

We’re afraid of the public’s idea of what a ‘really bad institution’ is.

We’re afraid of some of the disability community’s idea of what a ‘really bad institution’ is.

The JRC is a really bad institution.  It’s doing that horrible kind of damage at the same time that it’s doing the physical damage.  I can see that.  Because it’s got enough funding, it can really fuck with people’s heads.

But you could force the JRC to remove every piece of physical punishment it owns, even restraints.  And it would still be horrible.  It could even become worse.  Because when places can’t focus on hurting your body, they have more time to focus on hurting your mind.  And hurting your mind does the most lasting damage there is.

The JRC needs to be shut down, period.

But there are places just as bad that will never be shut down if we use the JRC as the model of what the worst kinds of institution look like.

And there are places even worse that will never be shut down either.

And the worst places in the world, generally, are the same ones that will get propped up by the shutting down of the places the public has the most visceral unpleasant reactions to.

There’s problems in the disability community, too, and until they’re exposed for what they are, there will be a lot of difficulty changing things.

There’s… a lot of disabled people out there who engage in the completely unproductive practice of competing to talk about who stayed in the worst institutions, who had the worst treatment.

Understand that when I’m talking about the worst institutions above, I’m not talking about the worst institutions in any kind of competitive sense.  I’m talking about, the worst in terms of the overall amount and kinds of damage done.

I’m not saying that there aren’t people who had worse experiences in state institutions than private ones, or that there aren’t people who had worse experiences in traditional institutions than in pseudo-utopian farm communities.  I’m not trying to negate any one person’s personal experience.  I’m just trying to explain… things are not what they seem, what everyone believes to be true is not necessarily the truth.

But I’ve seen disabled people who compete with each other about things like this.  They say that they, unlike so-and-so, had experience with real institutions.  Or they, unlike so-and-so, had real bad experiences.  Or they, unlike so-and-so, were really traumatized by what happened to them.  That because they stayed for months rather than days, or years rather than months, their experiences were automatically worse and more deserving of recognition.

And there’s… absolutely nothing productive that happens there.  That’s ego-driven bullshit.  It’s not activism, it’s not helping anyone at all.  It’s a competition in self-pity.

So understand, again… when I’m comparing things, I’m doing so not with the aim of undermining any given person’s experiences in their own life.  I’m doing so with the aim of showing people things they don’t want to see.  I’m saying that what most people say is best, in terms of institutions, is often the worst of all.  That often, the most damage is done where it can be seen the least.  People have to understand this if they’re going to have any hope of actually reducing damage.

So close the JRC, close it over and over and over again until it’s really damn closed.

But… don’t focus on it to the exclusion of places just as bad or worse that don’t necessarily look as bad on paper.

Understand that your visceral reaction to the idea of skin shocks doesn’t make it the worst possible punishment that can be devised.  It’s a pretty diabolical physical punishment.  But sometimes — no, more like often or usually — people are damaged worse by things that don’t touch them physically at all.

Your instincts here are not necessarily a good guide to what is truly awful.

And I worry so so much about what will happen to people after it closes.

And I worry so so much about people enduring unspeakable damage, sometimes far worse than skin shock would hurt the same people, in institutions considered progressive and even utopian.

(Trust me, behind just about every utopian institution lies a dystopia beyond imagining.  And I worry about the “He loved Big Brother” effect obscuring people’s views of what actually goes on in those places.)

My worst nightmare.  And when I say my worst nightmare, I mean, these are actually real actual dreams I have that are worse than any other nightmares I’ve ever had.  They vary in content, but they go something like this:

I’m living in a place with lots of other people with disabilities.  There are staff there.  The staff try to give us every freedom they possibly can, at least as visible from the outside.  In one of these nightmares, I’m climbing a tree, outdoors, and totally allowed to do so.  But there is someone following along behind me to make sure I don’t get hurt.  I feel like a child.

I feel like I’m suffocating.  I feel like I’m suffocating in cotton candy.  But I can’t point to anything particular that’s wrong.  There’s this fog that lurks over the entire place.  It’s white, maybe slightly yellow or pinkish white, but mostly white.  And it obscures the ability to see anything.  And it smells like sweetness.  And it feels like death, in the worst possible sense.   But you can’t tell where it’s coming from.  It’s everywhere and nowhere at once.  You can’t see it except in your head, and only out of the corner of your mind’s eye.

Staff are nice to us, in the same way that people are nice to young children.  They giggle at us as if we’re cute.  They hug us a lot.

They also make us do what they want us to do.  It’s not possible to know how they do it.  They don’t use physical torture or restraints.  They don’t even always use drugging or anything like that.  We just… somehow always end up moving in the direction that they want us to move in, so to speak.

When I wake up, I feel an intense longing for the place I just woke up from, just for a minute or two.  And then I realize what’s going on, and I want to vomit over and over and over again until the experience is gone from my head forever.

This isn’t the best description, because the problems of these places can’t be described.  I once spent six days in a place very much like that, though, and the sickly-sweet-death-fog clung to me for years before I could get it to dissipate.

Nobody will ever get the kind of backing to close a place like that, that they will to close a place like the JRC.  Even though a place like that could potentially do more damage than the JRC, after a person is moved from the JRC to a place like that.  And if we close the JRC, it’s quite possible idealistic people will be building places like that to take its place.

I can’t explain why it’s as bad as, ,or potentially even worse than the JRC or a place like it.

I can’t.

But it is.

Please trust me on that.

Please understand what I’m trying to say here, because it’s incredibly important, and not enough people are saying it.  (And no, it’s not “don’t close the JRC” or “the JRC is good”.  Somehow, people are really fond of reducing important, complex things I say to simplistic bullshit like that.)

I’m trying to say this, for the sake of all the people who won’t be helped if we focus only on closing the JRC.

Now I’m going to try to get some sleep again.  I hope I don’t have nightmares.

ETA:  Before anyone tells me, as they always tell me when I say this, that the Judge Rotenberg Center will call attention to the issue and everything will follow from there and the public will be interested in closing all the other institutions then, later, once we get to the JRC first, that’s not at all how I’ve ever seen it work, not with Willowbrook, not with anything.  (And a friend of mine worked in a “good institution” that killed a former Willowbrook client, mind you.  She got fired for trying to stop them from killing her.  So she survived Willowbrook only to get killed by staff in a ‘supported apartment’ group home setting.  So… that’s a very specific example for a very specific reason.)  The public doesn’t want to close all institutions when they hear of things like this.  They want to make good institutions and then forget about the matter.  And the good institutions can be worse than the old ones in many ways.

[This post was originally written on December 21, 2013.  I completely forgot I wrote it, but it is always a good time to resurrect a post of this sort.  Because people always need a reminder of certain realities about  institutions.  They’re all too happy to forget, that much never changes.]

“I don’t know that person’s program.”

That's a sentence I've heard a lot. And when they don't say exactly that, they say things that mean the same thing. Usually in the developmental disability system, for some reason, although I can easily imagine it in other contexts.

What it really means:

“DD people aren't like regular people. When people do things to them that would be horrible if they happened to other people, there's always a logical reason that justifies whatever is happening. Staff and case managers rarely if ever abuse power. All of their decisions have the best interests of clients at heart. So if something looks terrible, chances are that there's a reasonable explanation behind it. I just don't know what that explanation is. And I likely never will, so I'm not going to judge.”

They say this when staff scream at an old woman with an unsteady gait every time she falls, and refuse to help her get back up or allow her to hold onto things for balance.

They say this when staff publicly humiliate a man who clearly has trouble moving to avoid obstacles, when he accidentally bumps into someone.

They say this when staff do their best to keep a boyfriend and girlfriend apart. Or when staff are okay with boyfriend and girlfriend, but balk at the idea that two women with intellectual disabilities have fallen in love. As if it's even their job to decide who can love who.

They say this when parents simultaneously put on a big public show of wishing their son could move out on his own like he wants to, but sabotage his every attempt to do so. Because they had planned out a whole life for him in the group home they run, and can't handle the idea that he doesn't want to live under their control the rest of his life.

They say this when a staff person kisses a grown man's leg and says “I kiss you boo boo aww betta!” in baby talk.

They say this when, in the name of integration, staff prohibit disabled people from speaking or socializing with each other. I just saw an instance of that last one, which is why I finally remembered to write a post on the matter.

They say this when we get outright tortured. Tied down. Skin shocked. Slapped. Pinched. Made to smell ammonia.

I wish I could upload the scenes from real life that play out vividly in my head. But like as not, people likely to say these things wouldn't consider me a reliable observer. They never do, when you start pointing out the truth. When you see yourselves as people. With all that this means.

Suddenly you are either too severely disabled to understand what's happening, or you're not disabled enough to grasp why treating people like dirt is necessary. Or both at once. And they'd much rather you were highly submissive, maybe even the really cool type of client who helps staff out by giving them information about other clients.

All of this requires seeing DD people as less than. It just has to. There is no other way to justify these actions towards us.

And I know how people see us. As in, I know what we look like inside their minds. Sometimes we're human — almost, anyway. Not quite. There's something vitally important inside every real human. And to them, we either don't have it, or are missing large chunks of it. So we go around in human bodies but there's pieces missing in our minds and our souls. Even people who don't believe in souls in any religious sense, still perceive something inside us as only partial.

I know this because this is one of those viewpoints that isn't content to stay in the minds of others. It tries to force its way as deeply into us as it can manage. Until many of us look in the mirror and see only part of a person.

I can't describe the violence that involves. It's horrible. And a whole system of relating to us, forces its way into our lives. It tells us that we are taken care of, that we can relax, go to sleep, almost. And then it suffocates from inside. There's no words for it.

I suspect the drive to say this about people comes from several places at once.

If you work in the system, there's not wanting to see yourself or your coworkers or people who could be you, doing something horribly wrong. Much less on a regular basis.

I also suspect a strong desire to trust the society they live in, not to do horrible things to people. Or at least, not to do horrible things to certain kinds of people.

A member of my family once told me that it took him a long time to believe what happened to me in mental institutions. He said that in order to come to terms with the reality of the abuse, he had to destroy a strong desire to believe that the society he lived in was safe and just. Him telling me that was far more honest than a lot of people are.

That desire to trust society gets in the way of understanding every kind of injustice. I am amazed that people trust a society that does its best to shut out and destroy all but a handful of people. But they do.

And not seeing us as quite exactly people, is the one thing that you can't avoid if you think like this. Because if you see us as people, you have to see what happens to us as dreadful. And you don't immediately, upon being told of the latest awful thing, say any variant on “I don't know that person's program.”

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What Makes Institutions Bad

[I wrote this in response to a Dave Hingsburger post. Andrea Shettle asked me to post it here. Summary of my very long response: Most people don’t have the foggiest clue what’s bad about institutions. What’s bad is something you pretty much never hear about, which is the violence it does to people’s insides at a very deep level. And that can’t be stopped by just removing the things that LOOK bad and throwing a layer of glamour on top.]

Please, please, please everyone who talks about this in the past tense — STOP. This is still going on. Everywhere.

I can’t even explain what it feels like to read things like this. Because I think too many people get the wrong kind of idea.

They will think that this is over. It’s not.

They will think that the awfulness and cruelty of an institution is measured by the size, the shape, the physical beauty or lack thereof, the amount of money funneled into it.

And those things are not real.

And those things — the belief in those things — are hurting and killing people still.

People don’t understand what’s behind the worst institutions I can possibly imagine. They think I’m kidding when I say it. Understand that I’m saying this as someone with experience of institutions that people often remark (from my photographs) look just like prisons, and institutions that look absolutely lovely to anyone who doesn’t have to live in them.

The worst institutions have lots and lots and lots of staff. They have beautiful grounds that people are more or less free to walk around on. Every room is decorated in ways that suggest a regular, pleasant house — and if anything is stained or broken someone fixes it, washes it, and paints over it within a day. There are no locks on the doors.

All of the staff are gentle and would never physically abuse an inmate. They are highly trained at redirecting and calming anyone who becomes violent. If you go outside, they follow you at a discreet distance, where they think you can’t see, to give the illusion of freedom and privacy. Their every movement and tone suggests sweetness and gentleness.

But they treat everyone as if they were somewhere varying, between infancy and four years old. With everything — everything — that entails.

Because they do not use physical restraint, they have to restrain you in other ways. They do it by such skillful manipulation that if you ever find out you were being manipulated, it’s long after the fact. If you confront them on it they’ll sweetly and politely tell you they have no idea what you mean. And they will continue to somehow always get you to do what they want, or else to feel awful about not doing so.

Glamour is a word that can refer to a kind of faery magic that can make a hovel appear to humans as a splendid palace. I often use the word to mean a similar kind of deception — a beautiful facade over a terrible reality. I make it part of my life’s work to see through glamour. And I see a whole lot of glamour used in conversations about institutions.

The above institution I have just described has a layer of glamour over it as well. If you look beneath the surface, it’s utterly horrifying. Most people don’t know how to see beneath the surface. Even when you personally are in such a situation, it can be hard to see.

You feel as if there is something pressing down on you, muffling and suffocating. But when you look around, there’s no outward sign of it. So why are you not happy? You must be an awful person to feel so awful when all these nice staff people are doing so much to make you feel at home. You look around, you try to search for what is bothering you, and it’s nowhere. But you’re in agony. Whenever you think nobody’s looking, you cry, sometimes it feels like you’ll never stop. Deep down inside you, you know something is going terribly wrong. But trying to pinpoint it is like trying to get a firm grip on a cloud.

Get a glimpse under the glamour and you see that all that has happened is a bunch of substitutions. They stopped locking the doors, but they started following you everywhere and subtly guiding you where they want you. The institution itself is positioned so that even if you tried to run away you couldn’t get anywhere. They stopped restraining your body, but their manipulation is like a permanent set of shackles on your mind. Their sweetness in manner hides the fact that they are sweet to you the way they would be sweet to an infant — even when you’re pushing sixty. Treat you like that long enough and you begin to respond and structure yourself like an infant, and the damage that does inside can’t be calculated.

I literally have nightmares about that type of institution. When I’m wrapped up in the glamour, this terrible calm takes over. It feels like something soft and smooth pressing all over my skin, and the temptation is to surrender to it and feel its fake calm, fake happiness. Then I wake up and want to vomit I am so terrified and disgusted with what I’ve just experienced.

This past summer I attended a recreation program for DD people. And it was so much like a replica of my nightmare it was scary. Sometimes I would get smothered under the glamour, other times I wanted to scream. I cried more that week than I normally do in years, yet I was at every turn made to feel as if the problem was me. I can be so very passive but even my most passive wasn’t good enough for them.

One day I looked around and saw that everyone there was older. From the era of big institutions. Where they were used to being treated like this, and mostly could out-passive me any day (which is scary because I can get very passive). I talked to a woman whose roommate goes there — she said she goes in a grown woman and comes out acting like a young child. And not in a way that’s just her self-expression — this is one of those places that molds you into that form.

To survive in a place like that something inside you has to break. It’s impossible to fully explain to someone who hasn’t been in that position. Something inside you has to die. And it doesn’t die any less because you got one of the “good” (read: glamour-covered) institutions. The same forces are crushing down on you either way, the difference is cosmetic.

The worst part of institutions is not physical violence, obvious forms of abuse or neglect. It’s not even the experiences you don’t get to have. It’s the damage that is done right down to your soul, by living under the power of other human beings. Glamour makes no difference. Prettiness makes no difference. Size makes no difference. Even length of time makes less difference past a certain point than you’d think.

Until you understand that damage — what it is, what it means, where it comes from — you will never get rid of institutions. You have to understand it on a very intimate level or you will reproduce it without knowing what you’re doing.

I still can’t tell you how long I was institutionalized. I can tell you roughly the amount of time I lived in mental institutions and other residential facilities. But that’s not the same as the amount of time I was in institutions. I call what I got when I got out, “community institutionalization”. That’s where you live with your parents but you spend most of the day being driven between various places — segregated schools, segregated day programs, segregated rec programs, each one with institutional power structures behind it. I remember mental institutions where they walked us to different parts of the grounds for different parts of the day. There’s not so much difference between that and being driven.

The transition between a locked ward on a mental institution and later periods of my life was so absolutely gradual that by the time I was “free”, I never noticed. That’s how they wanted it. I simply created the institutional walls around me wherever I went. That’s why I put “free” in quotes. If I had been someone else, I would have been free. Because I was me — because of my particular history — I was not. There were invisible walls all around me and I certainly never noticed the real ones were not there. Which was exactly the purpose behind what was done to me. They didn’t think I could function outside an institution so they carefully built one inside my head, making me truly unable to function anywhere.

I can get over the physical violence. The attempts on my life. The neglect. The sexual abuse. The parts of “normal life” that I missed and still am missing. So long as I physically survive (which even the recent rec program almost avoided) I will and can get over these things.

I am not sure to what extent I will ever get back the parts of me that died in order for the rest of me to survive. Every now and then I notice I’ve gotten a little bit back, and I think that finally everything will be okay. And then a little time passes and I realize how much is still gone.

I’m not even saying I can’t be reasonably happy. But there are parts of me I still have no idea if I will ever get back. Those parts weren’t destroyed by ugly bare rooms, horrific physical or sexual abuse, the loss of normal experiences, or any of the rest of the things most people think when they think of bad institutions. Those things happened to me and they are bad. But on a real basic level they are not the cause of the problem.

The cause of the problem is a certain exercise of power. Of person over unperson. And in order to survive it the inmates have to become as much of that unperson as they can manage. And that does violent damage deep inside the self, that can be incredibly hard to repair. It’s violent even when it comes with purported love and sweetness and light.

And until people can stop forcing us to damage ourselves in this way, institutions will continue. That, not anything else, is the core of what is wrong with them. But it’s much harder to put that into songs or images or even just words, that the average person would comprehend.

If only, oh if only

[This is for Blogging Against Disablism Day.]

I knew Adam.

I didn’t know Adam’s mother.

That’s important.

I knew Adam in terms of who he was after he’d already been created. I knew this funny, smart kid who liked to grab my hand and walk in circles with me, who fearfully tried to hide in my room every night when staff came around to tie him to his bed, who looked and sounded very non-standard, and all of these things were just part of Adam. The non-standardness no more and no less than any other part of him.

The only time I heard about Adam’s mother was through those sorts of overheard staff conversations that let you know exactly what you are to them. Through them I heard that no mother should be blamed for “giving up” a child like him, that the unusual but not unpleasant sounds he made were animalistic and unbearable to listen to, and that people like him were, in general, impossible, and should be locked up for the rest of their lives. I heard a lot of pity for his mother. I never once saw her visit — and even the most screwed-up parents usually visited their kids. She had to have at least some money because this was a private institution. But she was never there, and staff made it sound understandable that she would never want to see her child again.

I didn’t know Adam through staff eyes, and I did not know him through parental eyes either. I think this was for the best, all things considered.

And the same has been true of any disabled person I’ve known. Not all of us have been friends. Not all of us have even liked each other. There can be all sorts of negative things in between us like status and power hierarchies, stereotyping, pity, and so forth. But at the same time there’s almost always something missing that I’m glad is missing, and something there that I’m glad is there.

I have never mourned the existence of someone the first time I met them. (Or after that for that matter.)

I have never grieved that someone was not the normal person I expected and hoped for. Not even for a little bit. Not ever.

I have never “had to come to terms with” the fact that someone I knew was born different.

I have never had any urge to commiserate with anyone else over these sorts of things.

I do not look at a person and divide them artificially into the “normal” parts of them that I find tolerable and the “abnormal” parts that I find unbearable and tragic.

I do not look at my friends, compare them to other people their own age, and think how horrible it is that I don’t have the good fortune of experiencing my friends hitting all the ‘typical’ milestones for their age group, there is no sense of loss here.

These ways of thinking are just utterly and beautifully absent.

It’s right that they’re absent. It’s wrong when they’re present. I keep hearing we have to allow for the fact that it’s only natural for people (you know, real people, which I’m not) to grieve this part of our existence. How it’s just wrong, downright insensitive, to want more from people.

Want to know why I and many others I know get nervous about reading blogs by nondisabled parents of disabled people? Even many of the “positive” ones? Stuff like this (paraphrases of stuff I’ve really heard in dozens of variations for each one):

“I go into his room every night while he is sleeping. And he looks so normal. And my heart breaks wondering who he could have been if it weren’t for [insert condition here].”

“It hurts so much every time I see normal children her age. I realize how many milestones she hasn’t hit. How far behind she is. And she may never catch up…”

“Other people will grow and change, but my son will be left behind. Other people become adults, but my son will always be a child.”

“My daughter has to live in a group home because she lacks the skills necessary to live on her own.”

“They said my son would never walk, talk, or take care of himself. And now he’s done all those and more. I am so proud of him.”¹

“I overflow with love and pride every time my daughter looks me in the eye, gives me a hug, or uses her words. I would not know how valuable such things are if she didn’t struggle so hard to accomplish them.”

“Life with my son is bittersweet. I love him more than life itself but I know the things he will never do and it makes me sad.”

“I am constantly having to fight to pull my daughter out of her own world and into the real world. If it weren’t for me, she would be lost.”

I could go on, but I won’t. All of these sort of comments seem to be commonplace among nondisabled parent bloggers. When I question them people tell me they can’t help their feelings. But the fact is that without certain disability prejudices, they wouldn’t feel that way. And there are right and wrong ways to write about prejudice-based feelings. The right way puts them in the context of ableism. The wrong way simply serves to reinforce ableism in readers. And for disabled readers who could actually be harmed by the prejudices behind the feelings, the wrong way can feel like the twisting of the knife.

The post I just wrote is actually from an old draft on my computer. It seems that I tried to write this in two different ways. Instead of trying to synthesize them into one post, it seems better to just post them both at once. It’s a little repetitive but I’d rather do this than lose the slightly different meanings that each one has.

Despite appearances not response to any recent discussion. Just coincidence brewing in my head for some time. Also despite appearances not poetry. Just way of handling language at the moment.

I knew you
I didn’t know your mother

I only heard about her
In gossip made by staff
The sort of words they always said
That told us who we were:
They pitied her for having a child like you
And said it was good she put you away
And anyone would do so in her place

I knew you after you were already created
And I knew you roughly the way you were

I did not wonder why you were the way you were
I did not mourn that you were not someone else
I did not have a grieving period when I got to know you
I did not compare you to other children your age and cry that you did not do the same things they did
I did not see you as a special angel or a holy innocent
I did not see you as a normal boy who was stolen and replaced by an empty shell

And that is as it should be
And that is as it should be
And that is as it should be
And that is as it should be

Nobody should experience these things when they meet someone else
Yet people stand around commiserating with each other over all of those things
I walk around on the outside
Knowing I can never be part of that
Hoping they don’t notice the knife-pain that they cause

I know I am supposed to understand
I am supposed to grant that this is all natural
I suppose I can see when the world teaches you to think a certain way
That good people will come up with horrible ideas sometimes
I know I have thought and done horrible things before

But how long do we have to be patient
While the groups of people meet with handkerchiefs in hand
And blow their noses about the existence of people like us?

How long before they too will see
Beneath their shawls of tears and pain
Lies naked bigotry?

How long before the world stops glorifying the parents’ pain
And sees it as a tragedy of prejudice
Instead of a tragedy of disability?
(If there must be tragedy

How long before we don’t have to tiptoe around
How long before we can say
This public exhibitionism of pain and suffering at our existence
Denies our full humanity

How many more disclaimers
How many more do I need to make
To show I am not evil
For pulling back the curtain on evil
Will there ever be enough
Or will this always be
That they’re victimized
By having to face the truth
Of how the way they see us
Affects the ones like you and like me

It interests me that the way you and I related to each other
Is not exceptional when it comes to us
We are those below and those below are seen as
Sticking with our own kind

It is exceptional for one of those above to like us
To not mourn for our existence
This is praised as if it’s an achievement
It is just the way things should be

When you and I liked each other
Nobody praised us
If they took the time to notice at all
They either seemed indifferent
Or tried to split us apart

Not all of us liked each other
We had our own hierarchies
And prejudices
We were not some utopia
We are just as much a part of the world
As anyone else
And some of what happened was ugly

But we still saw each other
In a way the others didn’t see us:
We saw each other as we were
Not as we could have been
The sense of tragedy was entirely absent

One day I want to walk up to a nondisabled person
Wipe the tears from my eyes and say
“How tragic — you could have been disabled
And yet” (sniffle) “you had to turn out normal” (wail)
“Oh well. There’s always hope of a cure.”

What? You don’t see each other that way?
You don’t wonder (constantly) what might have been
If only, oh if only you were disabled?

It’s very simple:
Through our own minds
We are not lost and diminished
We are not those who would otherwise have been complete
We are real and whole
Because we are

---

¹ If the inclusion of this line seems offensive, please read the third comment on this post. I included it because the constant recitation of this line can be part of an overall pattern, that came up in a discussion between me, a nonspeaking boy, and his mother. If you use it outside of that overall pattern, I’m not talking about you. But the fact that the line is repeated to the point of cliche does mean something, and it’s not always something innocent. I also don’t mean in any context that it’s wrong to teach or learn those skills. But it can sometimes be part of a distancing, fear, and even hostility towards people who for whatever reason don’t have those skills, a sense of “If she had turned out like you, it would have been awful.” Again, if you truly don’t have that fear, I don’t mean you.

Blueberries

All of these articles are from one blog, flip flopping joy:

berries. blue.

The ABC Report about blueberry field abuse

up close through others’ eyes

Read those before responding to this post.

This is the first time in my life that MY community has been highlighted on national television. I mean…the place I worked. The place I have memories of. The place my body has memories of.

Not just “community” that I count myself a part of.

~has that ever happened to you?

It changes how you see things. Because you see yourself for the first time through the eyes of others. Up close. You can feel their breath on your skin. You can smell their perfume.

And you know what they think of you.

Not abstract you, not “identity you claim” you.

You.

She asks, has this happened to you, and I reply, [utterly inadequately compared to what she wrote]:

Not identical — we’re from different communities, and the issues are different. [Hopefully it’s obvious what I mean by different communities, even though this isn’t about “community identities’, etc. I’m not going to add any more disclaimers though, or I’ll never be able to write this.] But similar.

Every time they find torture in institutions, and try to fight for pointless regulations that won’t even stop the obvious torture, let alone the day-in day-out degradation and dehumanization that changes and smashes and wounds you inside worse than any physical torture ever could.
Reading the detached and clinical reports [from the agency that uncovered the abuses], and the news reports, about institutions that I was in, some of which I was in at the time the reports were being made. Remembering what the real issues were and that nobody who writes the things ever gives a damn about them, or about those of us who lived there, or about anything other than us as a symbol of mute helplessness and things that happened to us that we accepted more than we accepted the worst things. It fills me with feelings so powerful I can’t even name them. And I cry. Or I pound things. Or I just lie there immobilized by the feelings. And I never know how to explain it to anyone, even though I try my damnedest all the time because I know with my whole being that this is what matters [and so few of us are talking about it where people hear, it’s so much easier to just forget, and so difficult to put a finger on]. (And yet know that many will discount me because I’m the sort of person who ends up in those places, after all. Not reliable. Not real.)

“Intentional” communities… not.

I wrote part of this in response to a post on the change.org autism blog called Down on the Farm, about “intentional communities” (which aren’t really) built for autistic people (but not by us or with our meaningful input) along with some non-autistic people (who have much more choice and power than we do) in ways where the power structure screams institution even if the shape of the walls doesn’t (some people believe institutions are defined by their shape and number of residents, which is neither the sociological definition nor my definition — the definition I use includes a specific power structure that can occur anywhere).

The blogger’s response was not to actually critique all this in any meaningful way, but just to say:

I like the idea of [my son] Charlie working on a farm. He likes being outdoors and the kind of work one does when gardening strikes me as combining many of the things he’s drawn to do. Judging from his indifference to computers, he’s not likely to be a candidate for doing data-entry. And various sources have been saying to me, they’re aren’t going to be any of those sorts of jobs left when he’s an adult—-??!??!!?

Driving back from the post office earlier today, we saw a father and his young son digging in a huge pile of dirt in front of their house. The boy was younger than Charlie; I could see how eager he was to be helping his dad and I think the fact that he was getting to work with (play in) the dirt had a lot to do with it. Working at a desk isn’t for everyone, that’s for sure (even in the industrial-suburban Garden State—there are farms here).

Which completely misses the point of what these places really are.

I’m reposting my response here because I think it’s an important issue and I am disappointed in the blogger there for her treatment of it. Change.org is supposed to have a strong commitment to social justice and I see no such commitment in this kind of complacency about such a destructive place.

Here is my original post:

———–

I can’t explain why I think these places are a terrible idea. But I do.

Last year, an autistic woman (Danechi of And Stimming with Rainbows of Every Design) blogged about these places in a much more responsible way than they are being discussed here.

Her first post was called, The point of intentional communities is that they are *intentional*.

To quote the relevant parts (which are in response to the exact same community that is being discussed on change.org):

Bittersweet Farms is not an intentional community.

The point of intentional communities is that a person *intends* to live there. If they decide they no longer want to, they can leave. They make decisions about their own lives.

If a person is placed into a community by someone with greater power, forced to stay there unless the person with greater power moves them out, and has important decisions about their life made by those people in power, then they’re not in an intentional community. They’re in an institution.

Yes, even if it is on a farm. Yes, even if they are doing work on said farm.

And no, I will never willingly consider such a living arrangement for myself, even if I think intentional communities have the potential to be really cool, because Bittersweet Farms, and the Sacramento-area farm-institution in the very early planning stages are not intentional communities.

[…]

At most I can only realistically imagine an autistic getting a token role in this planning process. There’s no way we can get a majority. Even if we did get a sizeable minority, the power structures will still be the same, and they’re the most dangerous part of the whole thing.

Googling the name of the person in charge [of SAGE] shows that they’re a Rescue Angel and that they were somehow involved with the Green Our Vaccines Rally. I know what that means from an autism-science perspective, and I’m not happy with it, but I don’t know if it would have any significance from an institution-masquerading-as-pseudo-utopian-community-planning perspective.

Her second post on the subject is here:

I just spent time at another residential-farm/institution’s website reading the rationale for why agricultural life is good for autistics.

[…]

SAGE Crossing’s rationale/justification for concept has no similarity to my experiences, and clashes horribly with my worldview in general (that we should create a culture of inclusion). Theoretically a rural setting might be “safer” for autistic-me. (But is it for someone with my chronic illness? I think me-with-cystic-fibrosis is far better off in a city with nearby medical facilities.)

And there is no way that I’m going to live in a farm just because I flap my hands. People who flap their hands are allowed in cities too, for the record. And if all people who annoyed other people were sent out to the countryside, there would soon be so few people in cities that they would no longer qualify as cities.

Also, what the hell does needing to be anesthetized for routine medical procedures have to do with needing to live on an institution-farm? It seems like SAGE Crossing is just throwing out random stuff about autistics and assuming that people will infer we can’t be included in society based on these disconnected, irrelevant things.

I would like to ask why you don’t deal with these issues in the same manner that Danechi does. It seems to me that she thinks more critically, as well as more accurately and responsibly, about these places than you do. She has put into words things that I could only describe as a vague nausea and feeling of these things being wrong at the core, as well as being my worst nightmare. institution-wise (far worse than nightmares that call up images of totally rough and obviously degrading treatment).

When I say wrong at the core, I mean that the problem is not a superficial issue. It’s not whether some autistic people might like to live on a farm while others may not. (My autistic father grew up on a farm and his farm was nothing like these ones deliberately created for autistic people.) It’s about the power structure. And I am not equipped to explain what, precisely, is wrong with it. I don’t have that kind of language. I just know it’s terribly wrong, and become quite alarmed when I see writing by people who cannot appear to sense that at all. Especially on a site that is supposed to be about working for real change and social justice — which would require far more critical thinking about these matters.

If you want to talk about intentional communities, though, LeisureLand (another page, with photos, here) is a good example of an intentional community created by and for autistic people. And it is nothing at all like these more institutional versions of the same things. The institutional ones have an alluring form (at least alluring to some people) but a terrible substance.

At any rate, on a place like change.org I am highly concerned about posts that seem positive or neutral towards places as destructive as this one, and that appear to take places like this (and possibly group homes, etc., too) as inevitable, or inevitable for people with a certain level of difficulty doing certain things.

———–

…and that is where my original reply ends.

I think Danechi’s phrase institution-masquerading-as-pseudo-utopian-community-planning sums up the situation better than anything else I can think of. That’s what makes all the hair on my body stand up when I read about these places.

I’ve lived in a pseudo-utopian institutional farm community before, and my experiences there have done more lasting harm than straightforward beatings and attempted murder have (well, there were beatings there too, but they were not the worst part, merely the easiest to describe). I am sure such a remark would be really puzzling to a lot of people, but I don’t know how else to explain it. Certainly I was totally cut out for the kind of work there (simple, concrete, and repetitive), and I enjoyed the work-training program very much. Certainly it was less physically brutal than most. But of all the things I have had to untrain myself from in order to survive in the real world, that place has been the most strenuous, and the most resistant to my attempts to overwrite it.

At any rate, it concerns me that someone affiliated with Change.org can write about an institution-masquerading-as-utopia, and have their only response be a set of musings about whether their son might like it there. And it highlights a difference I have noticed between people who look to the core of such a place and find it highly alarming, and people who readily believe the propaganda and proceed to fantasize about how much they or their children might like living there.

Please remember it is propaganda, and does not speak to the reality of having your life controlled that thoroughly. Please remember that people who have had their lives controlled that thoroughly often cannot see the damage it has done until a long time later. You come to expect that kind of control and you forget what freedom was like, if you have ever even experienced it in the first place. And please remember that places created by one kind of people, and for another kind of people (where “another kind” can be understood to be different societal categories even when it’s not an actual difference in essence), are rife with power imbalances and the potential for great harm. And that carefully crafted utopias on the surface are often among the most insidious dystopias under the surface where you can’t get your hands on them in any concrete way.

Identical behavior, contrasting responses

This post has been forming itself in my head ever since I went to both a DD self-advocacy conference and MIT within the same week last May. I’ve just for whatever reason not had the chance to actually write it.

I really enjoyed spending time at MIT. People there accepted me more or less as I was, and accepted a lot of other disabled people as well. In fact, their entire Human 2.0 symposium, that happened while I was there, dealt with the fact that disabled people get a lot of technology before other people do, and was about how technology that could enhance everyone’s lives was being developed specifically for disabled people all the time.

At some point there, I had a bad migraine and needed to lie down. They allowed me to lie down backstage under a table. I expressed fear over this. They were shocked and said that people lie down on the floor all the time at the Media Lab, that it was just part of how the place worked, and that they couldn’t imagine why I was afraid to lie down in public. I didn’t know where to begin with the sort of cascade of connections that went through my head more than ever at that point, but a steady stream of which had been falling through my head the entire time I was there.

In May, I went from a self-advocacy conference for people with developmental disabilities, to MIT. This involved an extreme contrast in what the lives of many of the people there were like, in terms of what sort of person they were classified as by society in general. In other ways, there was no contrast at all.

When I was younger, I went from assorted programs for students classified by the educational system as “gifted”, to assorted programs for people that the educational and medical systems had written off with a whole variety of labels. There was a great contrast between the way people were treated. There was, yet again, less innate contrast between the people involved than most people imagine.

If I were to describe being places where people routinely ate non-food items; had a variety of unusual tics; appeared to believe things that most people would call delusional; found it impossible to learn in regular classrooms; looked at first glance (and had been thought to be by others) what most people call “crazy” or “retarded”; were frequently under the care of neurologists, psychiatrists, and other such professionals; had unusual mannerisms and postures and behavior that in most places would be considered bizarre; and frequently had pretty extreme delays in areas like self-care; which one of these places do you think I’d be talking about?

If you thought special ed… the answer is yes.

If you thought mental institutions… the answer is yes.

If you thought gifted programs… the answer is yes.

I made the transition between these situations more abruptly than most, so I was able to see the similarities and the contrasts very starkly. Most people who have been in only one or the other situation, or whose transition between one and the other situation is gradual, or whose perceptions of other human beings come pre-filtered and pre-packaged to the extent that they see great differences merely based on what classifications the people belonged to… these people would not necessarily observe these things. I did observe them.

Lying on the floor is one of the things that starkly cuts through all of these situations in my memory.

I remember me, and a lot of other people, lying on the floor at places like nerd camp and other gifted programs. We were seldom, if ever, chastised for it.

I remember a tall boy in a mental institution who tried to lie on the floor in the hallway. I remember staff converging on him and saying they would have to do something about it. He wasn’t hurting anyone. He wasn’t even blocking anyone’s entrance to anywhere. Another inmate tried to say so. The staff told her that he needed to learn to do as he was told and needed to learn to look appropriate. They called for reinforcements, since he was a really big guy, and then grabbed him and carried him off to the isolation room while he fought them. His fighting them was seen as a symptom of a violent nature, rather than the natural reaction of someone who has been grabbed by several people to be carried off to a small, locked room, for doing something he considered totally normal.

People don’t always realize this simple fact: Lots of people do the same things for the same reasons, regardless of how they have been classified by the medical profession. Once the people doing these things are in an environment where their every move is watched and pathologized, they can get in trouble for it, or get put on an extensive behavior program for it. My ex-boyfriend ate paper and most people saw it as an eccentricity, because he was labeled gifted. There were a lot of people who ate paper in other settings, probably for the same reasons my ex did, whatever those reasons were (I never asked). People put them on behavior programs for it, because they were considered to be doing it “because they didn’t know any better” (and whatever anyone said in public, it was obvious they thought of a lot of us as “crazy” or “stupid” or both, and thought those to be the reasons we did anything they didn’t like).

I used to be unafraid of doing things like lying on the floor, even sleeping on the floor. Psychiatry made me afraid and called that an improvement. I walked into MIT afraid, and they were astounded at my fear, and disgusted at the sources of it.

I went through gifted programs terrified of when someone would discover that I understood less than they thought I did (in sociological terms I was aware, as few others were, that I was discreditable, but only partially discredited). But because of the privileged life I’d led in terms of that classification, while I legitimately feared being put in mental institutions and labeled, I never dreamed that I would become afraid of as innocuous actions as lying on the floor, running around squealing in happiness, or a number of actions that were deemed totally normal in the environments I lived in. But I did become afraid of those things.

For three days, twenty-nine staff members at Elgin State Hospital in Illinois were confined to a ward of their own, a mental ward in which they performed the role of “patient.” Twenty-two regular staff played their usual roles while trained observers and video gameras recorded what transpired. “It was really fantastic the things that happened in there,” reported research director Norma Jean Orlando. In a short time the mock patients began acting in ways that were indistinguishable from those of real patients: six tried to escape, two withdrew into themselves, two wept uncontrollably, one came close to having a nervous breakdown. Most experienced a general increase in tension, anxiety, frustration, and despair. The vast majority of staff-patients (more than 75 percent) reported feeling each of the following: “incarcerated,” without an identity, as if their feelings were not important, as if nobody were listening to them, not being treated as a person, nobody caring about them, forgetting it was an experiment, and really feeling like a patient. One staff-member-turned-patient who suffered during his weekend ordeal gained enough insight to declare: “I used to look at the patients as if they were a bunch of animals; I never knew what they were going through before.”

from The Lucifer Effect by Philip Zimbardo

And that’s what happens during what people know as an experiment. Imagine being put in such a situation because something about you was deemed pathological, by people who viewed you as such.

I enjoyed my week at MIT. But every moment I was there, I was conscious of what an autism “expert” had told me, which was that I didn’t belong at a university at all (if I ever get an MIT business card, she will receive one in the mail). I was conscious of being a privileged member of what was otherwise considered an outsider-caste to that whole system, conscious of this in a way that even with my fears I had not been conscious of prior to experiencing being shoved into the typical environments of that caste once others discovered my place in it. I was conscious of a society that tolerates and even celebrates certain behavior among those it considers highly intelligent, while condemning others to torture for the exact same behavior because they are considered either not intelligent enough, or too crazy, or otherwise deviant, or some combination of the above.

And I came home to my own apartment, where last week a staff person felt he had the right and even the obligation to report to my case manager that I was grumpy in the morning before breakfast (edited to add: in fact, he never made me breakfast, or lunch either). How many of you out there who share this morning grumpiness trait with me have it reported to a case manager and put in logs that would normally go into your permanent record, and even treated as signs of your overall personality?

(I should note that even many of those considered “highly intelligent” do, have, various, labels, and things like racism and classism can greatly influence what label a person gets. If I were anything other than white or middle-class, I might have had very different sets of labels much earlier.)

It’s because of experiencing the extremes of this so rapidly and close to each other, sometimes in such combination with each other (because my life can’t just be sliced up into two categories without any complexity to them), that simply having my normal behavior accepted at MIT for a week isn’t good enough for me. I won’t be satisfied in this regard until everyone else with a psychiatric or developmental label (or who would get such a label in certain situations) can enjoy the same freedom to be themselves in completely harmless ways, and the same level of inclusion in society and decision-making that affects us, that those of us considered “highly intelligent” often enjoy, and until nobody gets written notes in their official record for being a grumbly grouch before their morning breakfast or coffee.