Tag Archives: people who treat me like a child

When Orange Speaks Louder Than Words

When Orange Speaks Louder Than Words

Mel wearing an orange shirt, dark glasses, and a brown Aussie hat.Fey and Mel nuzzling faces while Mel wears an orange shirt.Mel with only hir torso and arm visible, wearing an orange shirt with an orange crocheted shawl hanging off hir arm.An orange crochet project sitting on Mel's lap, bamboo yarn with a lot of shell stitches that is going to become a cardigan, with a metal crochet hook with a green handle.

Orange is the color of Autism Acceptance Month.  Because it’s the opposite of blue, and blue is the color that everyone is told to wear for Autism Awareness Month.  Which kind of sucks because my favorite colors, and nearly all of my clothes, are brown and blue.  And I used to really hate orange.  Sometimes I hate the term Autism Acceptance, too — I like the idea behind it, but I don’t like the way the term has become a meaningless buzzword in some people’s mouths.  Whether it’s parent groups who throw the word ‘autism acceptance’ around to sound current but don’t actually accept the slightest thing about their autistic children, or whether it’s autistic people who’ve fallen in love with the words and forgotten the meaning.  Either way, I like it as a concept but not as a buzzword.

Anyway, I hated orange.

Then my father died.  I was very close to my father.  As a way of remembering him, I began to wear his clothing. My mom sent me a bunch of his shirts, suspenders, watches, and other assorted clothing and jewelry.  And I began to wear his clothes, regardless of color.  

My father wore a lot of very colorful clothes.  I had to get used to that.  But most of the colors he had look surprisingly good on me.  This did surprise me because his skin was a very different color than mine, much darker.  But someone pointed out that while our skin was different in terms of darkness, the actual hue of our skin was nearly identical.  Which goes a long way to explaining why nearly any color that looked good on him, looks good on me.   The only place we seem to go wrong are on certain pastel shades that just look better against his shade of skin than mine.

Wearing my father’s clothes is more than a symbolic act of remembrance.  It helps me get inside of him.  It helps me find him inside of me.  It helps me find the parts of him that I didn’t even realize were there until he was already dead.  There’s something about it that makes me love him even more, makes me comfortable in my own skin, makes me see the many things about us that are alike as well as the differences.

And orange, most of all, has come to symbolize that entire process for me:  Finding something totally unexpected about my father that was also inside me all along.   Finding that many shades of orange (mostly darker shades, definitely not pastel peach shades) look good on me, sounds like a superficial thing.  But when it’s in the context of my father’s death and the meaning he had and continues to have in my life, there’s nothing superficial about it.  It’s about as deep as things get.  And that’s unexpected as well.

By the way, one thing I never take off is the circular necklace you can see in one of the pictures.  It’s a see-through locket containing hairs from my father’s beard, that he agreed to send me before he died.  I take it everywhere with me, and even a year ago when I was too delirious to understand that my father had died at all or what the necklace was, I still managed not to lose it despite losing some very important items during the same hospital stay. 

So I now appreciate orange a lot more than I used to, and I now have more orange things to wear this month.  Both because my father gave me orange clothes, and because since coming to view orange as symbolic of all these things, I have started making myself more orange clothing.  The shawl pictured above is something I crocheted myself, and the crochet project I am working on in the last picture will be a cardigan made out of bamboo yarn.  I’ve made other orange things as well.

I had other things planned to post this month.  I had a lot of things planned.  Like the song says, “Life is what happens to you when you’re busy making other plans.”  I’ve had tube problems and problems with my steroid levels that have taken up a lot of my time and energy lately.  So I think the very long post I had planned for Autism Acceptance Month is going to turn into a Blogging Against Disablism Day post for May 1st.  And this post will have to suffice for an Autism Acceptance Month post — right at the end of the month, of course.  But all these problems have made my inertia twenty times worse than usual, so getting posts out at all is a miracle and it’s a good thing that the posts I am talking about that I’d planned, are mostly already written months ago, and then stored in anticipation of this month.  Because I rightly guessed that I wouldn’t be able to write much for whatever reason when the time actually came around to have things ready.

Orange also stands for fire.  I used to think that fire meant the kind of anger problem I used to have, and I was afraid of my own fire.  But someone told me that my anger problem was misdirected fire.  That real fire, properly channeled, could mean something closer to passion.  And that’s when I began to truly integrate fire into who I was, and it flowed through me, and it was something I’d been missing for a long time.  Adrenal insufficiency sometimes feels like it tries to drain me of that fire, when I get close to an adrenal crisis, it’s like everything goes flat and deflated.  But when fire is properly flowing through me, it feels like finally being alive again.  So that’s another thing orange has come to mean to me. 

The things I’ve found about my dad in myself, by the way, are not irrelevant to Autism Acceptance Month.  My father and I are both autistic, and we share a lot of traits.  One of the traits that we share that I treasure the most, is our tendency to communicate with objects.  As in, both communicate by means of using objects, and experience communication (it’s the only word that really fits) between ourselves and supposedly-inanimate objects.  I knew to some degree this was true of my father, but it became much more apparent as he was dying, and even more apparent when I received many of his belongings after he died.  I arranged some of them into a memorial shrine, and any time I want to see him all I have to do is look through the objects and I can always find him by sensing the connections between them.  

Not a lot of autistic people talk about this, but a lot of autistic people very much do things like this.  And many people have told me they look at objects differently after seeing how I have interacted with objects after my father’s death.  People are used to seeing objects as dead in themselves.   And they are used to seeing interaction with objects as inferior to interactions with people.  They are used to seeing attachment to objects as an ‘attachment to material possessions’, like a consumerist thing.  So they are legitimately surprised when they see someone doing it completely differently than anything they’ve ever seen before.

Some people react well to that and some people react badly.  I’ve been lectured more times than I care to count, on how objects are not really alive and you can’t really interact with them.  Usually they talk to me in the same way they would talk to a five-year-old who believes in unicorns.  Other people have explained anthropomorphism to me at great length, totally neglecting the fact that I’m not in fact attributing human qualities to objects.  I interact with them, they interact back, I see them as alive, but being alive is not a human-specific quality.  And they are alive in a very specific way that has nothing to do with humans and nothing to do with the actual categories of animate and inanimate beings in general, and I interact with them as what they are to a degree that most people who see them as dead probably don’t. 

And usually the person doing the explaining manages to be incredibly condescending both to people like me, and to cultures that don’t differentiate as much between living and non-living creatures as modern Western culture does, or differentiate much differently.  The view is that we’re just simple-minded idiots who don’t yet know enough, aren’t yet highly evolved enough as a person or as a culture or both, to have figured out what Western science knows.  Never mind that their view of how we see things is usually mind-bogglingly simplistic in and of itself.

For some reason, such people seem to feel almost compelled to force their worldview on me.  Like I’m just one tiny little person who happens to be moving through a world full of people who mostly don’t share this worldview.  I’m hardly a threat to anyone.  But they seem to feel threatened enough that they have to quash any sign of difference anywhere they see it.  And I’m not just talking about nonautistic people, I’m also talking about autistic people who don’t happen to share this particular autistic trait.  (Because no autistic trait is universal, and quite often autism involves opposites a lot — so that both a trait and its polar opposite will be common autistic traits.  Sometimes even both showing up in the same person at different times.)

But what really amazes me are the people who are willing to have their mind changed about objects after they see how I interact with them.  They see that there is respect there.  They see that there is depth there.  They see that like many autistic people with similar traits, I move through a very sensual world full of richness and depth.  They see that I use objects to communicate with other people, to say important things that I can’t say with words.  They see the way I use objects to remember my father and to interact with him after his death.  They see that there is something deeply real here.  And they come to respect that, even when they don’t fully understand it.

And I never set out to cause them to respect me.  Any more than I set out to convince one of  friends that being gay is not a sin.  I actually told her I didn’t mind that she thought it was a sin, as long as she didn’t interfere with my life on that basis, and went on living my life around her as I was.  She said that just knowing me changed her mind about gay people on a religious level and on other levels.  And that’s not something I ever set out to do, in fact I was careful not to set out to change her mind.  But it happened anyway.  And that’s how this thing with the objects has happened:  I never intended it, in fact I never would have known the change was happening in some people if they hadn’t told me in private that I had changed their entire way of viewing how people interact with objects. But they did change their minds because of me, intended or not.

And I think that’s really important.  Sometimes people don’t come to accept autism — or aspects of autism, as the case may be — because we’ve been shoving things in their face.  Sometimes they come to accept autism, and autistic people, and autistic people’s ways of being in the world, because they spend enough time around us that they get to see us in a well-rounded context.  Not in terms of rhetoric but in terms of real life.  And seeing us, seeing how we live, seeing that our ways of doing things are legitimate even if they’re different than anything they’ve ever imagined before, that can be far more important for some people than anything we could have to say about the matter.

If saying things weren’t important to me, mind you, I wouldn’t be a blogger.  I may be a reluctant writer at times, but I’m definitely a writer.  But I also think there’s things in the world far more important than words.  And I also think there’s many different ways to communicate something, and writing is only one of them.  Not everyone can write, but everyone can make a contribution, deliberate or not, to the acceptance of people like us in the world at large.  And as writing this kind of post has become more and more difficult for me — it was never easy, but it’s getting much harder with time — I’m learning to very much value my ability to just exist and get things across by the way I exist around people.

There are a lot of things about being autistic that are hard, and I have to confess that lately it’s the harder things that have caught my attention more often.  The difficulty of keeping in touch with even my closest friends, to the point I’ve become almost completely socially isolated lately.  The ever-increasing level of inertia, which has snuck up on me because it looks very different after severe adrenal insufficiency completely reshaped the way I experience stress on a subjective level.  The stress levels that come not from emotional stress but from the sheer strain of having to function on an everyday basis — walking from one room to another, getting in and out of bed and chairs, going to the bathroom, making words, changing feeding tube dressings upwards of twelve times a day, going to new places that are visually overstimulating, anything involving getting information into or out of my brain, thinking on an intellectual level.  Things that most people don’t even know are skills, let alone difficult ones, because most of them are done automatically.  And all of these things are contributing to it not always feeling great to be autistic lately.

But orange brought me back to my father, and my father brings me back to objects, and objects bring me back to that rich world that my father and I both take part in.  Which brings me back to the way that just being who I am in front of people has changed their entire way of viewing objects and people’s relationships with them.  And that’s the good side of autism, and this is one of many ways that autism acceptance — the real thing —  can happen.  One person at a time, through living our lives as authentically as possible so that people can see exactly who we are and how we do things.  And when they see that, when they see who we are and how we live, some of them come to accept us on a deep level.   And not a lot of people are talking about that.

So I guess I’m glad for orange after all.

Almost Alike: A Medical Cautionary Tale


Blue medical bracelet with a medical symbol in white and the words "Adrenal Insufficency" on a metal plate.

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.

“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.”

Communication page I used to handle that invasive woman I met.


It’s been quite some time since I posted my letter to the woman who accosted me on my way to the para transit van. But I wanted to update people on how I handled the situation when she approached me the next day. Which was a success.

I knew that I have trouble coming up with new language of any kind in high stress situations, especially involving people with bad boundaries. So I spent most of the night creating a new page for my communication software.

I use Proloquo or Proloquo2Go for most of my communication these days. My super-expensive, clunky Dynavox has been collecting dust in a corner ever since I first got Proloquo2Go years ago. Proloquo2Go has two separate sections. One where you type and it speaks out loud. Another where you can say something by pressing on one or more pictures.

I created a page where everything was about boundaries in one way or another. These are things I’m often unable to say in real time. I have a hard time remembering its possible to say these things. And coming up with words. And monitoring my emotions in response to situations. And communicating around invasive people. And pushing words past what feels like a barrier between my mind and everything else. Let alone all this and more at once.

Here’s the page I created:

[Description: A communication page arranged as a grid with one sentence per square. Each one has one word or sentence. Words in parentheses are what the previous sentence is an abbreviation for: Back off. Don’t patronize… (Don’t patronize me.) Don’t talk to me. Don’t touch me. Don’t want talk about. (I don’t want to talk about it.) Fuck off. Get out of my face. Go away. I am not a child. I don’t care. I don’t do eye contact. I’m not kidding. I’ve a right to be mad. (I have a right to be mad.) it’s not funny. Leave me alone. Now. Please. Stay away from me. Stop it right now. Stop. That hurts my brain. You put me in danger. (You’re putting me in danger.) you’re hurting me. You’re too close to me.]

I tried to make it so that I could use various levels of politeness, forcefulness, and rudeness depending on the situation. One way I did this was with different icons. Obviously, “leave me alone” and “fuck off” are very different. But another way I did it was by adding icons for “please” and “now”, the two squares outlined in blue. This made it so, by hitting two buttons in a row, I could say “please leave me alone” or “leave me alone now”. So I have a pretty good variety of intensity I can use.

I was expecting her the next day. She had said she wanted to meet me in the morning. So I prepared myself. I tried to stay connected and aware of my surroundings. She sat down at the table next to me. And she watched until my staff person had to leave me alone for a minute. Then she approached.

Because I was expecting her, I was prepared for the onslaught people like her carry with them. That thing where when they get close to you, it almost feels as if they are overlapping with you. So in my head I made sure to mentally separate us, which made it easier to communicate. I hit “please” and “stay away from me”. She yammered some sort of explanation and went back to her table.

I maintained deliberate mental distance the rest of the morning that I was anywhere near her. My case manager later made an effort to find her. She’d heard the story from a guy who witnessed it, and she wanted to report this woman. But we never found her. And things went just fine the rest of the day.

In any alternate universes where I didn’t make this communication page, the likely outcome is much worse. I would have been pretty much trapped around this woman, and that would have done a kind of emotional damage that takes time to recover from. It’s nothing that has any kind of official name, it just leaves me more vulnerable to other people like her until I can reverse it.

Another important thing I did besides create the communication page, was to rehearse everything many times beforehand. If I don’t do something like this, it’s hard to use the communication icons. Contrary to popular belief, just having the ability to type or use icons, doesn’t solve every communication problem.

And without rehearsing, there’s a big chance I’ll never use a page like this. My fingers won’t know where to go. My mind won’t remember it’s possible. My eyes won’t remember to look through the page to find possible things to say. My will won’t be able to push through the barrier between experience and expression. And much more. That’s a lot of places for communication to break down.

It is absolutely vital that people who use communication devices, have ways to respond to violations of our basic boundaries. Disabled people are far more likely than others to have others behave invasively with us, ranging from subtle to violent. People teach us from our earliest years onward that such invasion is normal, natural, and something we should accept without complaint. We have to have the means to say no.

And we have to have the means to say no forcefully, even rudely. We need to be able to use cuss words, even if we have the kind of personality that would never use them. Sometimes the only reason that we appear unnaturally even-tempered is because we’ve never been allowed to be otherwise. We have the right to say fuck off, but people don’t always give us the ability to do so.

Of course, even if we say things like that, there’s no guarantee anyone will listen. Some people’s reactions when I get mad, remind me of the way people giggle at my cat when she swipes someone who touched her in a way that hurts her. It’s like she and I aren’t real enough to them, so our anger is cute and funny.

I’ll also never forget the time someone made an asinine comment when I was out in public. I typed a response and stuck the speaker up to his ear so he could hear it. All his friends burst out laughing. One of them said “Dude, that guy’s cussing you out using a machine!” Which is… so much not the response I was going for.

But still. We need to be able to have the full range of responses that other people can have. To do otherwise smacks too much of that idea that we should be passive and sweet all the time. Being able to say no, being able to cuss, being able to tell people to go away and leave us alone, these are some of the most important things people with communication impairments can learn to say. But often people don’t teach us that stuff, they don’t want us to know it.

Another important thing: Communication pages like this are not just for people who absolutely can’t ever speak. They are for anyone, anywhere, who for whatever reason would be unable to say things like this in situations where they need to be able to say it.

I’ve run into too many people lately who desperately need something like this, but are afraid to use it because they don’t fit the popular image of someone who needs a communication device. Some of them have even been told that it’s horrible or disrespectful of them to even consider using a communication device. But my position on it is that having the most effective communication method possible can result in better emotional and physical health, in some situations it can even save lives.

So given all that? If something like this can make your life better, for any reason at all. Whether you can’t ever speak, can only sometimes speak, can only speak about certain topics, can speak but it isn’t what you mean, can speak but typing or using picture icons works better or uses fewer mental resources. Or anything else like that. Do whatever works best for you, and screw anyone who tells you different.

Anyone who feels the need to act as the supreme gatekeeper of all things assistive technology… not only do they have too much time on their hands, but they are letting ideology get in the way of real people leading better lives. And that is just plain wrong, and fundamentally unfair to people who could benefit from a communication aid.


To the woman who accosted me on my way to the para transit van tonight.


I agreed to meet you tomorrow.

That was before you made it clear that I really do not want to meet you tomorrow.

It is not ever okay to demand that I look at your face, especially not by getting in my face. For the record, I didn’t see your face even when you did that. I saw a weird swirl of blue and brown. Since your skin is pale and you have blonde hair, I’m pretty certain none of that was your face. That’s what happens when you seriously overload a person with bad visual perception. I was using those eyes before you wrecked them like that.

It is never okay to demand that I hook pinkies with you and “pinky swear” that I remember your face and will meet you tomorrow. Especially after I have done everything in my power to pull away from you when you held out your pinky in ever more intrusive ways.

It is not okay to then, after I have had a clearly negative reaction any time you got near me, come after me and demand a high five.

Most of this conversation happening in the tone you use to talk to a little kid.

It is doubly not okay to respond to my terror and attempts to back away from you and cover my head and face, by saying “YOU SHITHEAD!”

To be perfectly clear:

I do not want to meet you tomorrow. Or ever.

I do not want to talk to you.

I do not want to touch you.

In fact, of the three, I want that one the least. So don’t, ever, make another attempt to touch me. Don’t lean towards me or get in my face either. That makes me feel like you’re inside me somehow.

Because of you, I may not make it back tomorrow. Not for fear of you. Although that’s a consideration. But rather because your actions turned a good but tiring day into overload and excruciating pain.

My mind is running in circles. I could not answer some very simple questions when I go home.

I was barely able to get to bed from my wheelchair because of your actions.

Because doing that all to me had actual consequences towards my ability to think, understand, and move.

I might not get to sleep in time to go back tomorrow. It takes my brain time to recover from that kind of assault and sometimes it takes that out of the time I need to be sleeping. Or I may be too overloaded by tomorrow. Or too tired. And you would be the main reason for that.

I’m not a child. I don’t pinky swear. I don’t do patronizing sing-song voices. I don’t like to be touched by strangers and I don’t like strangers trying to force me to look at their faces, touch them, or promise them anything. And I don’t like being called a shithead for not responding to these things or looking terrified by these things. That goes double if you said shithead in the same light-hearted, patronizing way you would to a cat who just put their teeth on you for petting them too long. So don’t think that “I was just joking” would change my mind.

Oh and if you wonder why I didn’t just type this when I was with you? Because your presence rendered me unable to type from the get-go. That’s always a very bad sign for any future interactions. It doesn’t just happen around random people, it happens around people who are peculiarly invasive.

If I see you tomorrow and you have read this: DO NOT talk to me, touch me, joke with me about what happened tonight, hang around near me acting huffy, or any other direct or indirect interaction with me. I can’t take it. I couldn’t take what you did already. Enough is enough. FFS.

Also? If you hadn’t put me through all that, I wouldn’t be refusing to talk to you anymore. I would meet you tomorrow, or not, and either way things wood be fine. So don’t blame me. I’m just trying to watch out for my health. (Yes, literally. Which is why I’m not budging on this.)