There is ableism somewhere at the heart of your oppression, no matter what your oppression might be.

If you are oppressed, then you face ableism. It’s that simple.

You’re probably not used to this concept at all, so I’ll explain(1).  Bear with me, because this is quite important whether you know it yet or not.

From my perspective, there’s two main ways that oppressions collide with each other. One is horizontal. One is what I’d call vertical or embedded. This post is about vertical or embedded oppression, which very few people discuss. Horizontal oppression, on the other hand, is very fashionable to dissect in detail at the moment, and I’ll leave that to the people who are much better at it than I am.

Horizontal oppression works more or less like this: Sexism and homophobia can go together because lesbians exist, who are both gay and female. Racism and transphobia go together because there are trans people of color. Etc. The connection is a side-to-side one.

Vertical oppression works more or less like this: Sexism and homophobia are connected vertically, because sexism is embedded within homophobia: You can’t have some of the core aspects of homophobia, without also having sexism. This applies not just to lesbians, but also to gay men. Because a large element of homophobia against gay men involves comparing them to women, and applying many of the same sexist attitudes towards gay men that would normally be attributed to women. That’s where you get the idea that there’s something wrong with gay men because gay men are sissies, effeminate, possess feminine attributes, etc. They’re first equated with women and then degraded in ways that have to do with women. You can’t have homophobia minus the sexism and have it take anything like a recognizable shape. It depends on sexism. That’s the big difference between horizontal and vertical oppression. Another big difference is that horizontal oppression is symmetrical (sexism + ableism = ableism + sexism) but vertical oppression is not (sexism is embedded in homophobia but homophobia is not embedded in sexism).

Every kind of oppression is connected to every other kind of oppression horizontally. But not every kind of oppression is connected to every other kind of oppression vertically. Some kinds of oppression are not embedded in any other kind of oppression at all. Other kinds of oppression are embedded in just one or two kinds of oppression. Other kinds of oppression are embedded in many forms of oppression.

Ableism is, to my knowledge, the only kind of oppression that is embedded in every other kind of oppression I have heard of. I have my theories as to why, but they’re not relevant here. When I say things like this, people think that I’m trying to make a case that ableism is the worst kind of oppression, or that I’m trying to get in some kind of pissing contest or another with regards to whose oppression is more uniquely terrible than anyone else’s. I’m not. This has nothing to do with that kind of comparison. It’s just that some kind of oppression had to be the one embedded in more kinds of oppression than any other, and ableism happened to fit the bill.

I’m not the only person to notice this. I think I’m the first person to coin the idea of horizontal versus vertical oppression, although I’m sure there are other people who have put similar ideas in different words. But disabled people have been talking about the pervasiveness of ableism in other forms of oppression for a really long time. We have tried to convince other oppressed people that our fight is, by necessity, their fight. Generally people don’t understand what we’re saying and find ways to ignore it, forget it, or even belittle it.

But people really should pay attention when we say this. Because when you have another form of oppression embedded within your own, you can’t possibly address your own oppression without addressing the other. Not because of a horizontal connection that only exists in certain circumstances. But because of a vertical connection that you can’t possibly get away from: Your oppression would not be the same kind of oppression without that other oppression stuck very close to the center. If you’re gay and you truly want to end homophobia forever, you can’t get away from having to deal with sexism. You can’t. You can pretend that you can, but you can’t actually do it.

So now I’m going to describe some specific examples of ableism in the forms it takes when it’s embedded in other forms of oppression. These are just examples. Later on, I’ll give you some guidelines for how to spot ableism quickly and easily, and where to look for ideas about fighting it. So here are some ways that ableism embeds itself in other forms of oppression:

• When gay people are considered to have a psychiatric disease.
• When men’s rights activists claim that the women’s Olympics are just the Special Olympics under another name.
• When people of color are painted as inferior and deserving of unequal treatment because their IQs are supposedly lower than white people.
• When women’s bodies are seen as a deviant and irregular version of men’s bodies, all medical testing is done on men first and women only as an afterthought, ordinary experiences of women are considered medical while ordinary experiences of men are not, etc.
• When eugenics is applied to poor people and people of color in addition to disabled people. (Eugenics is fundamentally an ableist idea, all applications of eugenics are applications of ableism.)
• When black men involved in riots are deliberately diagnosed with schizophrenia and brain studies are done on them in order to pathologize them and by extension their political stances.
• When political dissidents of all kinds (including those involved in anti-oppression work for their own groups, whatever they may be) are locked up in mental hospitals.

These may seem like scattered examples of specific kinds of treatment, but they’re not. They all have certain core traits in common, and they all combine central characteristics of their own oppression with central characteristics of ableism. Such that it literally does not matter what kind of oppression you face, you’re guaranteed to face ableism as a component part of it. You can’t get away from ableism.

You can try, of course, and many people do try. The most common way other oppressed people deal with ableism is by not really dealing with it at all. Instead of addressing the ableism that forms the core of the problem they’re facing, they distance themselves as far as they can from disabled people.

What do I mean? Take the IQ situation. Nondisabled people of color who are classified as having lower IQs than white people, rarely look into how IQ has been used to oppress disabled people ever since it has existed, pretty much. They don’t look into what cognitive ableism is. They don’t look into the self-advocacy movement by people with intellectual and other developmental disabilities and the many ways they have criticized IQ testing and the way it is used against disabled people. Instead, they try to prove that people of color don’t really have lower IQs than white people.

Mind you, that’s an important thing to prove, if it’s true. But you can’t stop at proving that. Plus, if you really do end up having lower IQs, then you’re basically screwed. Stopping at “They’re wrong about our IQ score, we’re just as smart as anyone else” leaves you vulnerable in addition to inadvertently contributing to the oppression of disabled people. Looking into how the idea of being smart got equated with having a certain IQ score? Looking into how IQ has been used against people who score low on IQ tests (for all kinds of reasons) throughout history? Looking into the general shape of cognitive ableism in general and IQ-based cognitive ableism in particular? Understanding the basics of what ableism is and how it functions – by taking a certain kind of person and saying that we’re biologically inferior and this justifies seeing us as having less value, making fewer contributions to society, and being oppressed and discriminated against?

You have to do all of that. Proving that scientific racism is actually pseudoscience is important. But understanding the ableism that underlies scientific racism is just as important if not more so. Because if you take what happens when you have one of those things and not the other? Proving it’s pseudoscience leaves you forever vulnerable to the claim it’s actually real science. Dealing with ableism means that whether or not your IQ score is technically lower than someone else’s (and if you really look into ableism, you’ll see how meaningless that question can get, because it assumes that people actually have some kind of innate trait called IQ), the core oppression will not be there. And as a bonus you’ll have contributed to lessening oppression against actual disabled people as well, rather than inadvertently contributing to ableism itself.

This will all make a lot more sense when you understand what some of those core characteristics of ableism are. And understanding what some of those core characteristics of ableism are, will make it much easier to spot ableism within your own oppression. I pretty much guarantee that as soon as you understand the basics, you will start seeing it in places you’d never expected. So here are a few very simple aspects of ableism that you can spot within other kinds of oppression:

• Any time one group of people is considered biologically or psychologically inferior to another group of people, and unequal treatment or oppression is justified on that basis, you’re dealing with ableism.
• Any time you deal with eugenics, you’re dealing with ableism. Whether you’re dealing with “pure” eugenics aimed at disabled people in particular, or the more common situation where it’s intermingled with race, class, ethnicity, criminality, and other real and purported traits. You’re probably used to hearing of eugenics in terms of racism, classism, or anti-Semitism, but eugenics originated in ideas about disabled people and those ideas were then applied to all these other groups.
• Any time you deal with medicalization (including psychiatric medicalization), you’re dealing with ableism.
• Any time people are compared on the basis of what they can and cannot do, and that comparison is used as the basis for viewing or treating them differently, ,particularly in a bad way, you’re dealing with ableism.
• Any time you’re dealing with “scientific” proof that a group of people is inferior to another, there’s a really good chance you’re dealing with ableism. If the “science” is couched explicitly in terms of medicine, biology, or psychology, it’s almost definitely ableism. So basically, if you hear that your oppression is justified on “scientific” grounds, perk your ears up for ableism, you’ll probably find it.
• Pretty much any time you’re dealing with a situation where one sort of person is given access to part or all of a society, and another sort of person is barred from that access, and it’s justified on the grounds of ability in some manner, it’s ableism.
• Any time your oppression is framed in terms of people like you being sick or having a medical problem for some kind, there’s ableism involved.

Keep in mind that for all of this, it doesn’t entirely matter whether the purported sickness or diminished ability level is real or not. The ableism is going to be there whether a person is actually possible to classify as disabled, or not. This is one reason that disfigurement is considered a disability in a lot of contexts. It’s also why laws like the Americans with Disabilities Act often contain a piece that says that it’s not just disabled people, but people who are mistaken for disabled people, who are protected. What matters to make something ableism is not whether or not the person qualifies as “biologically inferior,” whatever that means – it’s how people are treated based on that purported inferiority.

Once you start to see the basic patterns involved in ableism, you can see why it’s behind core aspects of every other kind of oppression:  Every form of oppression uses ableist ideas, actions, and concepts to further some of its most fundamental goals.  You’re going to always have your oppressed group being ranked in a hierarchy based on ability and found wanting.  You’re going to always have your oppressed group face some degree of medicalization.  You’re going to always have your oppressed group treated in ways that disabled people are treated, and the same sorts of reasons used to justify such treatment.  And unless you address these things, you can’t address the way your oppression plays out.  They happen in areas too central to how the oppression works — you can’t pretend the ableism doesn’t exist and get rid of the whole oppression at the same time.  Your form of oppression would be unrecognizable without ableism as a core feature.

You can learn a lot more about ableism by looking into what disabled people have already figured out about it. If all you can find is lists of “ableist words” with people telling you that stupid is a slur or something, you’re not usually going to find much depth there — whether or not you think stupid is a slur, that’s just not that fundamental to what ableism actually means. And frequently that sort of shallow take on things is what you’ll find if you just look up ableism. But if you look into the hard-core stuff within the zillion different branches of the disability rights movement, you’ll find a lot.

One of the best general introductions to modern disability-rights thinking about ableism in general, that I’ve found, is the book Pride Against Prejudice by Jenny Morris. There are tons of other entry points, that’s just one of the clearest, from my perspective.

You don’t have to agree with everything a disabled person says about ableism. Disabled people don’t all agree with each other.

Some disabled people seem to concentrate entirely on language and insist that it’s the most important thing because it changes people’s thoughts and changing people’s thoughts changes their actions and so forth. I think that’s a dangerous misconception, and I don’t honestly care so much what people think as much as how they treat me – if they think I’m inferior and treat me with respect anyway, then their thoughts are their business. I’d rather deal with someone who treats me with utter respect and calls me the worst ableist slurs I’ve ever encountered (IMHO, “retard” and “vegetable” and “empty shell” are all up there), than deal with someone who knows all the right words but treats me like shit. Other people have other ideas entirely about these things.

You get the idea: We don’t all agree . You don’t have to agree with all of us. You can’t possibly agree with all of us anyway. A lot of times people embroiled in identity politics get really wrapped up in the idea that the oppressed person is always right about their oppression. That’s bullshit. We can be as wrong as anyone. However, we have on average thought more deeply and for longer about our oppression than other people have, so you can benefit from our experience when dealing with the way your own oppression takes the same shape as ours.

And what specific situation you’re talking about will determine a lot about which disabled people you want to go to first. Want to deal with critiques of IQ testing? Go to people with intellectual and other developmental disabilities first. Don’t be fooled by stereotypes, we have a long-standing self-advocacy community who have been developing ideas about this stuff for decades.

And there are also always general ideas about disability that can be applied across the board, but in slightly different ways. The idea of accessibility was once focused entirely on wheelchair access. These days, there’s also a concept of cognitive access. Where interpreters in disability context used to concentrate entirely on translating between signed languages and spoken languages, there are now interpreters who assist people whose speech is hard to understand, and there are cognitive interpreters or English-to-English interpreters who interpret between the words and gestures of someone with a cognitive disability and the words and gestures of someone without a cognitive disability. The social model, like most aspects of mainstream disability theory, was once only for physically disabled people, and is now being applied to cognitively disabled people as well. Neurodiversity was once used in a context that was almost exclusively about autistic people, and now it’s about anyone with a neurocognitive disability.

Understand – I’m not endorsing any of these concepts. I hate some of these concepts. I think some of them are misguided or dangerous or simplistic or all kinds of other things. But I don’t want to decide that for you. I’m just giving you resources as a jumping-off point and you can make up your own mind. Hell, I’m not even that heavily into the idea of analyzing oppression in the way I’ve done in this post. I just think it’s important and useful for someone to be doing it somewhere so that people can see the underlying issue here – which is that you can’t address your own oppression adequately without addressing ableism, no matter what your oppression is, whether you’re also disabled or not.

So with all that in mind, I want to give you some keywords for common disability communities or disability-based ideas. Again, none of this is an endorsement of any of these communities or ideas or the views contained within them. They’re just places to start looking. I get frustrated when people say “Google things, it’s easy” and then won’t even tell you what to Google. Most people don’t even know enough about ableism to know that ableism is fundamentally about unequal treatment on the basis of real or purported biological and psychological characteristics. Most people who have heard of ableism have only heard of it in the contexts of word lists. There’s no way someone in that position is going to even know where to begin on Google, and it’s unfair to have that expectation of people. I’m perhaps more sensitive to that kind of thing specifically because of understanding cognitive ableism – and that’s precisely the sort of situation where an understanding of ableism can be useful throughout any oppressed group. I guarantee as you really learn what ableism is – really learn the depths of it – you will find concepts you can use in fighting your own oppression.

One more note about the keywords: All of these communities and ideologies and intellectual traditions, come from vastly different places. All of them accept some forms of ableism and reject others, that’s pretty much inevitable. Some of them are groups of people formed together mostly by life experiences, others are groups of people formed together mostly by shared diagnostic categories, others are a mixture of both. Some, like the concepts of developmental disabilities and psychiatric disabilities, are more accidents of history than categories that have an automatic, genuine meaning. Some, like psychiatric consumers versus psychiatric survivors, fall within the same broad category of people but differ based on how they interpret their own experiences, which aspects of the medical system they accept and which aspects they reject. But all of these are groups of people, and ideas formed by groups of people, who have formed significant ideas about the rights of disabled people within an ableist society. While the faction wars can be absolutely infuriating at times, the diversity among disabled people in terms of both life experiences and Ideas about those experiences, can be a great strength. You can find really important ideas within every single one of these groupings without ever having to believe everything they say wholesale.

So here’s a list of keywords you might find useful:

• Disability rights, disability rights movement
• Disability culture
• Crip culture, crip, gimp
• Self-advocacy, developmental disability self-advocacy, intellectual disability self-advocacy, learning disability self-advocacy, self-advocates, I/DD self-advocacy
• Cognitive disability, physical disability, psychiatric disability, intellectual disability, developmental disability, sensory disability
• Autistic self-advocacy, autistic liberation, autistic rights, autistic community, autistic culture
• Deaf community, d/Deaf community, Deaf culture
• Psychiatric survivors, psychiatric consumers, psychiatric ex-patients, consumer/survivor/ex-patient, c/s/x, mad pride
• Neurodiversity, neurodiverse, neurodivergent
• Patient advocacy, patient’s rights
• Disability theory, disability studies, social model of disability, radical model of disability
• Cross-disability
• Disability access, accessibility, universal design, visitability
• [Insert disability, disability-type, or disability-tool name here] access, [Insert disability, disability-type, or disability-tool name here] accessibility – for instance, wheelchair access, wheelchair accessibility, blind access, blind accessibility, screenreader access, screenreader accessibility, cognitive access, cognitive accessibility, etc.
• Cognitive interpreting, English-to-English interpreting, sign language interpreting, [insert specific sign language here] interpreting, speech-to-speech relay
• Ableism, disablism, ablism, disableism, disphobia, handicapism
• Cognitive ableism, psychiatric ableism, physical ableism

I know I’ve left plenty of people out, and this is obviously centered on English-speaking cultures. But that’s more than enough to start with. If you’re looking for specific ideas tailored to specific experiences, then learn what these terms mean so that you can look up those experiences when you need to. Different movements, and different parts of the same movement, will give you very different ideas about the same problems, and that can be incredibly useful.

So I hope by now I’ve convinced you that not only is ableism about more than whether or not it’s a slur to say the word ‘stupid’, but it’s a vital part of understanding any other form of oppression you might face. I also hope I’ve given you enough places to start, that you can make a good start on finding any resources that might be useful to you in beginning to understand ableism and the experiences of disabled people in the world. And again, I guarantee that if you begin to truly understand what ableism is, you will find the concept useful in contexts you never dreamed of.

If you’ve made it this far, thank you for listening.  I really appreciate it.  Getting this idea out there means a whole lot to me, even the parts of it I’m not so sure I agree with.  It’s stuff that someone needed to say, so I said it.

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(1) I’m putting what would normally be an introduction, down as a footnote, just so it won’t distract from anything in the actual post. The post is far more important than the introduction. So here’s what I was going to write as an introduction: 

 

This was an extremely difficult article for me to write. I understand the underlying idea easily enough. But to put it into words has taken me a long time, and a lot of effort. This is more abstract and intellectual than my posts tend to run.

But I felt like while a lot of disabled people alluded to this idea, nobody was expanding it enough for nondisabled people with no connection to the disability community to understand it. When I tried to tell people in short form, they assumed I was saying something totally different than what I was saying. So I developed these ideas until I could articulate them, and then over the past six months or so I have worked very hard at writing them down.

I still barely finished in time for Blogging Against Disablism Day, I wasn’t actually sure I could finish in time for Blogging Against Disablism Day. I’m still shocked that it’s happened at all. This was the original post I intended to write for BADD 2016, one that dealt with ableism as a whole rather than one particular disability experience. 

I’m very relieved to have finished It, not least because I am always pigeonholed as an autism blogger, I don’t see myself as an autism blogger, and it’s frustrating to sometimes only be able to write posts that reference autism a lot. Autism is not my only disability. It’s not my central disability – I don’t exactly view myself as having one of those. It’s just a word that psychiatry coined for a bunch of people, tat’s become useful enough that I’ve felt compelled to use it in certain circumstances. But I find that even in disability contexts, hell even in contexts with other autistic people, the idea of autism begins to overshadow your personhood in a way that few other disability labels match in my experience. Nobody considers me a ‘myasthenia gravis blogger’ and writes about my entire life and all of my ideas as if they can be encapsulated by the idea of myasthenia gravis, but that’s exactly what people do with autism. I can write about things that have nothing whatsoever to do with autism and still get most of my responses back about autism. It’s kind of ridiculous but nobody questions it, not even most autistic people.

So this year I really wanted my post to be about something that could not be tied back to autism like that. I mean I’m sure somebody somewhere will try, but there’s nothing about this post that is even remotely autism-specific, unlike my other two contributions this year. There are lots of other posts I wish I could have made this year, but I’m going to rest happy knowing that I made this one post, at least. 

And I hope that it can serve as a resource for people who are just beginning to learn about how ableism affects oppressed people who are not themselves disabled. Because it does, and it does so in specific, predictable ways that are pretty consistent across every form of oppression. And that’s important. And someone had to say all of this.

A lot of my posts in general seem to fall under the category of “I couldn’t find anyone saying the thing I wanted to find someone saying so I said it instead.” And this definitely falls into that category. There’s a lot of ideas contained within the post that I don’t even necessarily agree with, but that are necessary to the way the post is written. So this is very much not a personal post, and very much a post about a general idea that I think is important to communicate, even the parts of it that I don’t wholly agree with. What other people take out of it is their business, but I hope each person can find something useful there.

Edited with BlogPad Pro

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.

Love, Fear, Death, and Disability

People fear and even hate disabled people because we remind them that they are both fragile and mortal. They don’t want to remember those things about themselves. And they find ways to physically shut us away, and mentally shut us out of their awareness. And they delude themselves that they are different. That something they do will prevent them from ever becoming one of us. And prevent them from ever dying.

I have lived a long time as what I’d call precariously ill. A person who’s precariously ill isn’t terminally ill. There’s no saying for sure that we’ll die of our illness. But death is a constant possibility.

In my case, my gastroparesis led me to frequently inhale large amounts of stomach fluid at once. I have bronchiectasis, which makes it easy to get infections and hard to clear them. And untreated, severe adrenal insufficiency, which can turn an ordinary infection into an adrenal crisis. That combination made my health, and my life, very precarious indeed.

I have a strong belief that if people were more open about death, people would be less terrified of their own mortality. And thus less terrified of things that remind them of their mortality. Like, say, disabled people and sick people.

I’ve never had what they call a “Near Death Experience” ™ where you come very close to death and have this fairly uniform experience of a light at the end of a tunnel and all that kind of thing. But I’ve had encounters where I’ve gotten too close to death for comfort. Usually I had an infection that wasn’t playing well with my untreated adrenal problems. I would become extremely weak, so tired that it felt like just keeping my heart running and my basic bodily functions going, was too much. and I was losing the ability to do those background things your body is supposed to do effortlessly. And then I’d see death hanging around, it’s the only way I know how to put it. Sometimes other people around me would see it too.

A light would fill the room. It wasn’t a visible light. It was something I’d see on the inside of my head. It seemed to be coming from everywhere. There was a sense of being more profoundly at home than I had ever been in my life. As if there was this one tiny piece of the universe where I fundamentally belonged, and I had finally found it. There was an overwhelming sense of benevolence and peace.

And there was the sense that if I wanted to, all I had to do was relax and stop fighting. All I had to do was rest. And I could be in that intense, profound place of love forever. But if I fought, and won, it would still be waiting for me when my time had come. It did not entirely urge me either way. It was patient. It had all the time in the world.

But while it didn’t actively urge me to die, death did have a gravitational field. That’s what I called it during my first conscious encounter with it. I was ashamed, at first, to tell my friends what it had felt like. I was afraid they’d think I was weak, or cowardly, or that I had a death wish. So with some disquiet, I told my friend what it had felt like the first time I encountered death in this manner.

It felt, at first, like I couldn’t fight. More than that, I didn’t want to. I couldn’t even conceive of fighting. I had a strong urge just to rest. To allow my heart to stop and my breathing to slow and to surrender myself completely to death. The closer I was to death, the stronger this feeling was. So I started referring to it as a gravitational pull. It was only when I gained a lot of strength back due to medical treatment that I even had the will to resist, let alone the power.

My friend gave me an explanation that made me feel much better about my reactions. It was not that I was weak-willed or wanted to die. It was entropy at work.

Entropy involves a system trying to go to the lowest energy state. In order to survive, living things are constantly fighting entropy. We do this by feeding off of other living things and converting it into fuel to give us the continued energy to survive. If we simply allowed ourselves to go to the lowest energy state without a fight, we’d be dropping dead right and left. Most of the time, we are good enough at temporarily cheating entropy that we don’t feel its pull on us.

But when we are severely ill enough that death is a possibility, then we begin to feel it. We feel how strenuous it is to stay alive. And if we are sick enough, and exhausted enough, we begin to feel an overwhelming desire to allow ourselves to go to that ultimate rest. To allow our bodies to wind down forever. And that is the gravitational pull we have to escape if we are to live.

Much like a black hole has a point of no return, death has an event horizon too. I’ve obviously never been past it. But I’ve seen people and animals who have. And I saw (in my head, not with my eyes) that same intense light around them, that seemed to come from everywhere and nowhere at once. I felt that same profound, unconditional love.

This is how I know that death is nothing to be feared. In fact, even though the separation between us and our loved ones can cause tremendous pain and grief, death itself can be a beautiful process for the person who is dying. It can be for those around them, too, if everyone lets it be what it is.

I want to emphasize something though. Yes, I believe that death can be benevolent, friendly, necessary, and even beautiful. But I also believe all those things about life. And given that we only get one shot at this lifetime (even if reincarnation exists, which I don’t pretend to know) then it’s very important to resist death until it’s actually our time to die.

Our life is something we owe not only ourselves, but the people and society around us. Whether or not we understand our contributions, we each have one, and the world loses something without each of us in it. Disabled people in particular get a lot of messages saying that we are burdens on society, that we do not contribute, and that it’s best if we’re dead. And that’s completely wrong. In fact it’s despicable, unforgivable, to do anything to convince someone that these things are true of them.

So I am not saying “Death is beautiful, surrender to it the first chance you get.”

I am saying “Life is beautiful and you are an important part of the world, whether you can see it or not. You have obligations to the living world, to stay here as long as you possibly can. But when your time truly comes, don’t be afraid. Death is a necessary part of life. And it can be friendly, benevolent, and beautiful in its own right. When your time comes, it’s possible to die with love, without fear.  And if you have ever existed, then some place in time, you always exist.”

One thing that facing death can do, is force you to reexamine your priorities in life. And that can be scary. It can be especially scary if there’s something in your life that you’ve been running from, hard, for a long time. As you near death, you won’t be able to keep up the fences in your mind that allow you to deny things like that. If you learn to face these things long before you get close to death, then death is less scary. And if there’s something you’ve done wrong that’s been a burden on your mind, it can be important to remove that burden before you die. That’s why some religions practice confession before death, but it doesn’t have to be in a religious context if you’re not religious. But the sooner you deal with things like this, the less they’ll hang around and make your death unpleasant.

But the biggest thing I have found, any time I’ve even faced the possibility of death. Even if I haven’t come close enough to feel that gravitational pull. Is that it’s forced me to examine what is really important in life, and what is trivial. And it’s actually pretty simple:

Love is all that’s important. The experience of love, the expression of love, living love and compassion as your highest and only principles in life. Living for what you can do for others, not what you can do for yourself alone. Everything else fades into the background.

I can remember an ambulance ride after aspirating stomach fluid. When that happens, you don’t know how long you’ll survive. You could get an infection and get over it, or it could do you in within a week. You don’t know if you’ll get lucky, at that point. And everything narrows down.

At that point, I always find myself faced with one question: “Have I loved enough, and have I expressed that love enough throughout my life?” Everything else falls away. That’s the only thing my conscience cares about in the end. Have you lived your life as a strong enough expression of compassion and love? The best way to have few regrets when you die is to get started living that love right now. Easier said than done, but worth the struggle.

This doesn’t mean becoming touchy feely and hugging everyone you meet. It doesn’t mean being serene and peaceful all the time, or never getting mad. (In fact anger is sometimes — sometimes — an expression of love at a particular moment. Not habitual anger problems, but anger as a reaction in a particular situation when everything fits together in a way that requires it.) Love is an active thing that requires constant evaluation and action. It’s not holding hands and singing kumbaya. It’s not feeling soft and fuzzy all the time. Expressing real love can be fierce and intense, difficult and demanding, even scary sometimes.

But if you want to have as few regrets as possible at the time of your death, it’s best not to wait: Get started living a loving life right now. And start facing things you’re trying to run from. And unburden your conscience from anything that’s been weighing on it. Because you don’t want to die terrified, fighting against yourself, feeling the pressure of unrelenting guilt or shame. It’s best to live your life now in a way that will leave you with no regrets when you die.

But that’s a hard thing to do. I’m aware of this stuff, but I can’t claim to be living the perfectly loving life that I want to be living. I know there are things I could be doing for others, right now, that I desperately want to do for others, that somehow never get done. Despite that, I know deep down in my bones that love is the only way to live a good life or die a good death.

It’s hard for even disabled people to talk about what a good death looks like, because we are under so much pressure from society to accept that death is better than disability, that death is an acceptable alternative to the unbearable suffering that we are supposedly enduring, that we will be happier dead than alive. The media is full of stories where nondisabled people kill us and we’re said to be better off, our deaths are said to be understandable. And stories where we become suicidal and instead of trying to prevent our suicides, our societies rally behind us to give us a ‘right’ to an easy death. That stuff is everywhere, and it makes it very hard for us to look at what a good death would actually be.

It’s especially hard to talk about accepting death, because people are always pressuring us to accept our deaths long before we are ready to die. I would quite possibly be dead already if I hadn’t had a lot of the online disability community fighting for me last year, when doctors tried to persuade me not to get a feeding tube. (They couldn’t deny it outright, because they knew I needed one. So they came into my hospital room every day while I was sick and weak and exhausted from pneumonia, and tried to persuade me that life with a feeding tube was so awful that ‘the alternative’ would be preferable.) I clearly disagreed with their assessment of when is the right time to die, and I disagree with anyone who tries to make it sound as if living with a feeding tube, on a ventilator, or with other ‘artificial’ means of living, is somehow the point at which disabled people should give up and die.

But there is a point when giving in isn’t a bad thing. And it’s not a matter of how many machines you’re on to keep you alive. It’s not a thing that can be quantified. It’s that nebulous time “when your time has really come”. At that point, there’s no shame in giving up the fight, because fighting when you’re truly beyond death’s event horizon just makes death more unpleasant, it doesn’t keep you alive. But I’m afraid to even say this, because I know someone, somewhere, will twist it around and use it to persuade disabled people to give up and die before our time is really up. It happens all the time, and disabled people have every right to be extremely wary of talk of ‘giving in’ as a good thing.

But regardless of that, death still has an event horizon. And once you know, for sure, that you’re beyond that point of no return, then there is nothing wrong with simply surrendering to love, surrendering to the light, surrendering to whatever gods you do or don’t worship, whatever you want to call it, however you see it. And you will become part of the rest of the world, and that is right, and true, and beautiful. And heartbreaking for those you leave behind.

Between my experiences lately, and serious medical experiences my parents have been having, I’ve been thinking a lot about death.

Normally, I write about the ableism involved in pushing disabled people towards our deaths. The ableism in thinking that disabled is just half-dead and that dying is good if you’re disabled. The ableism in thinking things like “They keep people alive too long these days, it’d be better if people just died without a long drawn-out time where they’re disabled before they die.”

But now, I’m writing about a different aspect of ableism and death: The way ableism against disabled people is tied to nondisabled people’s fear of sickness and death and physical imperfection, fear of their own mortality. And dismantling fear of death dismantles that aspect of ableism. Nothing I say here should be taken as supporting ableist ideas about how disabled people should just accept our deaths and go quietly. Instead, I’m talking about a more universal acceptance of death, one that should happen when our time has truly come and not before.

And I’m talking about love, because I deeply believe, more deeply than ever, that love is the only thing that can make things right in the world. Love that comes from the depths of what it is to be a person, love that comes from everything good in the world, love that demands a lot of us and changes us and is intense and powerful and fierce and real and sometimes demanding and scary. Love that leads to compassion that leads to actions people undertake for each other, not for ourselves.

And most of my sense of this love comes from my encounters with death. I don’t know why it works like that, but it does. I’ve talked to others who have had similar experiences. Sometimes facing your own mortality can make you scared and twisted up and angry and bitter. But sometimes it can open you up to new depths of love and caring about others, that you didn’t know were possible. And even if you start out scared or angry or bitter, it’s possible to change bit by bit, more and more towards enacting that love in the real world.

I firmly believe that if people were more willing to face our collective fragility, vulnerability, mortality, and death, then we would be less ableist. All of us, disabled and nondisabled.

I’m going to end with a video taken shortly before the death of Eva Markvoort, a young woman who had cystic fibrosis, got a lung transplant, and ultimately died of chronic rejection. I’m posting the video because she so clearly allowed her impending death to open her up to all of the love that the world has to offer. This wasn’t easy for her, it didn’t just magically happen, and it’s not meant to be an inspirational cripple story, which I’m sure she’d have hated — one of those things where we exist only to teach a lesson to the nondisabled world, when we are so much more than a lesson. Yet I hope that we can all face our deaths as well as she did in the end. At least, I hope that I can. When I look at her in this video, I see in my head that invisible solid light that I see whenever I or someone else is sufficiently close to death — it’s all around her, it’s coming through her, and it’s allowing amazing, beautiful things to happen to her and those around her in her last hours.

This was her farewell video to the world, don’t watch it without something to wipe your eyes:

 

She once wrote a love letter that read, in part:

When I sit outside on the ferry is when I most believe in love. I don’t know why. Something about the wind makes me feel alive…the seagulls and the sky…whether its sunny and bright or cloudy and grey or nighttime and I’m surrounded by vast darkness…I just feel…FULL. Full of love and energy….almost as though I’m porous and the wind soars through tiny holes in my body and I’m part of it all…the earth and the people and the relation of everything with everything…as though I don’t matter…but its not scary…its wonderful….i feel so free.

It’s the only time I’m not afraid to die. Cuz I can feel the wind and I know that I’ll always be a part of life…and the love and energy that are contained in my skin will be let loose into the wind and the world will just know how much I care and love and I will live forever. I believe that love is what defines us as human. I believe that my love for you will never die. My heart breaks to think of how lucky I am. How happy and hopeful and full I am. I love you so solidly. I am real and you are real and I hope we will always be real. I am in awe of you. My interest in who you are is infinite. Drop a stone in the well of my desire for you and you’ll never hear it hit the bottom. You amaze me. Your love makes me invincible…no not invincible…immortal. Because when I die I believe my love for you will surround you till your soul joins mine in the wind.

I hope that the world can learn to overcome the terror they associate with fragility, imperfection, vulnerability, and mortality, the terror that currently makes so many people fear and hate disabled people (and, in turn, drive us closer to an untimely death).

I hope that the world can stop fearing death, and stop fearing the disability and sickness that reminds them of death.

I hope that people will understand my meaning here, and not use it to justify the deaths of disabled and chronically ill people who need all the help we can get to survive already.

I hope that the world can learn to love — in the active, difficult, demanding way that deep love entails — and that this can further all of the above. Because active love and compassion, caring about each other on every level possible, is the only thing that digs deep enough to create lasting change.  And love is the only thing that can end fear or hatred.

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

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

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

It was what I felt in my body.

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

It was the way I felt sturdy rather than fragile.

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

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

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

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

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

And on some level I accepted this.

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

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

Anyway, this has all changed.

I don’t think like this anymore.

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

But it’s not the test results.

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

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

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

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

No bully can take those realizations away from me.

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

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

But seriously:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My self-doubt is gone.

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

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

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

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

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

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

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

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

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

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

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

There’s all kinds of things we can do.

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

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

A bunch of stuff that needed saying

The following stuff is important stuff I wrote elsewhere on the net. If some of what I'm saying doesn't make sense, ignore it, it's just context that I'm not able to describe right now. The main thrust of what I'm saying should make sense without understanding the full context of what I wrote. And I can't rewrite it all right now for this blog. So the following is pretty much as I wrote it. Also sorry for all caps in places, it was because where I was writing it I couldn't use other forms of emphasis. And please don't assume that this is all about autism. Everyone always assumes that everything I say is all about autism. It isn't. Most of it isn't. Not even the stuff that talks about autism is all about autism. I am fed up with just about every such assumption because my world isn't made up of only or mainly autistic people and when I talk about things I always get replies saying “This applies to people without autism too” and I want to say “no shit Sherlock, that's what I meant in the firs

This turned into a long post, and it may not apply to the people I’m replying too, but this conversation just brought up a lot of things I’ve been thinking but having trouble saying.

Thank you for writing that. It’s really important.

Also another point I want to make. There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. Some of us this is true of, can communicate well by speech or typing also. Some of us can’t. But we usually have trouble with receptive language — either some of the time, all of the time, or especially, during the early formative years of our lives. I’m one such person.

Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at. Also, most autistic people who can talk about their experiences in words, are (or believe themselves to be) bad at nonverbal communication, and their experiences get seen as applying to all of us, when this is not true.

So for many of us — nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. I wrote about one such group of autistic people in my contribution (“Untitled”) to the Loud Hands anthology. Because I want people to know we exist. Because I want other people like me to know they aren’t alone, in an autistic community made up mostly of people who experience themselves as terrible at nonverbal communication. Where people even say that autistic communities are communities where people can use text or other forms of language, rather than having to deal with nonverbal communication. Even though there’s plenty of us who do better in person, BECAUSE we communicate best nonverbally, because words, whether we can do them or not, whether we are or seem good at them or not, are so hard and so difficult and so painful to keep using.

There are entire groups of autistic people out there who communicate with each other using our own unique forms of body language that are different from nonautistic body language, different from other autistic people’s body language, specific to ourselves, specific to each other. Who communicate best reading each others writing, looking for the patterns that exist between the words, rather than inside the words themselves. Who communicate best by exchanging objects, by arranging objects and other things around ourselves in ways that each other can read easier than we can read any form of words. Who share the most intimate forms of communication, outside of words, outside of anything that can be described easily, in between everything, seeing each other to the core of our awareness. Who see layers upon layers of meaning outside of any form of words.

In “Untitled” I was writing about my favorite communication ever, my video chats with AnneC (and her cats, when they show up, which Shadow absolutely loves communicating with me over video and reminds her every Friday at the right time because he loves it so much). I don’t necessarily do the best at visual stuff the way most people think of it. But I can see the patterns of movement in other people, including cats, whether or not I see them well in the usual forms of visual perception. And those patterns of movement tell me more than any word ever could.

I can even read nonautistic people fairly well at times — just not in the ways nonautistic people read each other well. That’s one of the problems with nonautistic research into autistic people’s abilities to understand nonverbal communication. Most of it relies on the understanding and use of words at the same time as understanding the nonverbal communication. And most of it relies on the kinds of nonverbal communication that nonautistic people are most aware of. This frustrates me to no end — how can people research forms of understanding that they don’t themselves have and therefore they don’t themselves understand even exists? I’ve actually told researchers ways they can research autistic people’s understanding of nonverbal communication without having to resort to the faulty methods they usually use.

And one researcher told me, when I asked, that every parent of an autistic child she ever met said that their child picked up easily on things like stress in the household, but that SHE ACTUALLY DISREGARDED IT UNTIL I ASKED HER, BECAUSE SHE’D BEEN TAUGHT THAT AUTISTIC PEOPLE COULDN’T READ BODY LANGUAGE. I’m totally serious. If researchers are that biased themselves, how can they possibly hope to even notice that we can understand things they assume we don’t understand?! I taught that researcher a bunch of very simple ways to test that without relying on the painfully stupid research methods that guarantee researchers will find only what they expect to find — relying on us to use and understand words, relying on our understanding of actors and stage conventions rather than real people’s real nonverbal communication, relying on nonautistic people’s limited ability to read autistic body language, all sorts of other flaws that seem obvious but that researchers themselves seem never to notice. So hopefully she will set up some real experiments that show our real abilities.

Anyway. Back to what I was saying. There’s entire subgroups of autistic people out there _ not just my own — who rely on nonverbal means of understanding the world, and nonverbal means of communication. That’s one reason I usually put myself in my videos — because I know that certain other autistic people will be able to read me like a book, even if nonautistic people usually can’t. And that nonverbal communication is a crucial part of my videos. (See why the entire first half of “In My Language” has no words in it. I was trying to make a point about the best way I communicate, the best way many people communicate, autistic or not, verbal or not. Mostly lost on people, who think it’s a video about autism. It’s not. It’s a video about communication and understanding and personhood, that happens to be made by an autistic person. Big difference. I told CNN why I really made the video, and they left out that part of the interview in favor of putting their words in my mouth. I think my real intent was too political for them.)

Anyway. I may be a writer, but my real best form of communication has nothing to do with words. I use words because I have to. Because most people won’t understand me if I don’t. I don’t use them because I like them, or because I “can’t do nonverbal communication so text is best for me”, or any of the usual reasons most people assume. If I could never use language again, spoken or written, I would be really happy. But the world won’t let me do that, so I carry on using a means of communication that is outright painful for me.

I don’t know the people in the video, but I know that the way their bodies move makes intuitive sense to me and communicates things whether they intend it to be so or not. (The forms of nonverbal communication I understand best are unintentional, in fact. That’s one reason tests using actors don’t work on me. I know an autistic woman who failed a test of nonverbal communication because it used actors and she kept describing their real feelings instead of their acted ones. What this says about nonautistic people’s understanding of nonverbal communication is… interesting.) Whether they are able to use spoken language or not, the video would lose a lot if it only relied on showing them speaking or typing the words.

And I really dislike a lot of the self-advocacy movement for relying mostly on the self-advocacy that happens through words, written or spoken. This leaves out people who can’t do either but who are nonetheless quite capable of advocating for themselves through their actions and movements. If I hadn’t spent a lot of my life forcing myself to do words, I might be such a person, so I am always aware of this. Words are not natural to me the way they are to some autistic people. They’re difficult and my development could have gone either way. There are also people who, no matter how much effort they put in, could never have used or understood words, and they are also extremely important, and they are also capable of self-advocacy, and they are still capable of communication that is more full of meaning than the communication of many people who use words.

I wish there were videos using their communication — which by definition wouldn’t involve words. Both people who would have been able to use words had they put in a crapload of effort at critical times in their development, and people who would never be able to use them no matter what. Such people exist. I sometimes wonder if they are too inconvenient for some autistic people to remember. I hate when people tell parents, “If you just gave your child a communication device they would be able to type words (or use picture symbols) and everything would be solved.” You don’t know that. You just can’t possibly know that. I hear that a lot, this idea that autistic people would all be able to communicate in words if only they were given a means to type them instead of speak them. And it’s so not true that its utterly ridiculous. I hear it both from people whose main way of communicating is speech, and also from people who use typing, and people who use both. It’s wishful thinking and it’s not true. There are people whose understanding of the world is just like a typical “aspie” except they couldn’t speak for motor reasons, and they are the most likely of those who use typing, to believe this myth.

Reality is that there are lots of people who will either never be able to use words, never be able to understand words, or both. Or whose use or understanding is so limited that they will never be able to use words as their primary means of communication. But they do communicate, whether the communication is intentional or not. And they do matter. And they are capable of self-advocacy. And they should be included in self-advocacy movements if those movements ever expect to represent autistic people, developmentally disabled people, cognitively disabled people, disabled people in general, whatever group is trying to represent itself in that movement. And in order to include them, you have to show their movements and their sounds and all the things they do that aren’t words.

It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language. (And surprise, that’s one thing that “In My Language” was actually about. And it would be about that whether I used typing or speech to communicate — either one would be my “second language”, and as such I can easily, easily envision a situation where I never learned and never would learn to use speech or typing, both of which I used at different points in my life.) And each person has one. Sometimes several people have a language that is in common but is not words. Sometimes each one has a separate way of communicating that is not words. But either way, you have to learn how they communicate, not force them to either communicate how you best communicate, or else be considered “non-communicative” for the rest of their life. And yes it’s possible to get consent to use their communication, it’s just sometimes harder work than asking a yes or no question in words.

And a community that doesn’t include such people isn’t my community. The developmental disability community is far better at including such people than the autistic community is, even though not all of the DD community manages it either. One reason I’ve spent a lot of time communicating with people who can’t use words in any form is because I’ve been in the developmental disability system for pretty much my entire adult life and have spent a lot of time with a wide variety of people. And I’ve spent a lot of time communicating with people who can’t and may never use speech or typing or even picture boards. And that’s something that certain segments of the autistic community are sorely missing. Even parts of the autistic community that involve people who don’t use speech, are often made up of only those people who were able to learn typing, and often put forth the (false) idea that everyone could learn typing if only they tried hard enough or were exposed to the proper teaching methods.

The response someone made is true: Some of the people in the video use typing, so they could never be shown speaking the words in the video. But I’d like to go further than people who use speech and people who use typing, because unlike a lot of people, my social world is made up of a lot of people who can’t do either one. And also made up of a lot of people who, even if they can use speech, typing, or both, those are not their best means of communication, and it would be better to show us using our best means of communication rather than merely the form of using words. Not everyone has words but everyone has a voice and a means of communicating. And not everyone who uses words sees words as their primary voice or their primary means of understanding things, and that needs to be respected. And I’m sick to death of spending time in communities where most people seem to miss these facts, and automatically see having a voice as the same as using speech or at least using language.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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“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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BADD: Pulling Back Curtains

This is my other post for Blogging Against Disablism Day (BADD) on May 1, both about caregiver abuse, this one about the most extreme kind. It’s in a heavy topic, but a necessary one given the public’s response to several recent murders of disabled people. The situations I’m describing are somewhat different from the recent murders that have come to light. But what we can learn from them is important to all such situations.

1. Introduction: Pulling Back the Curtains on Hate and Love

This is my first attempt to write about something extremely serious while avoiding a dark, focused state I recently realized was unhealthy. There are good and bad kinds of dark, just like there are good and bad kinds of light. This was the bad kind of dark, not the kind that protects but the kind that consumes and drowns you. It felt as if the entire world was engulfed in this place that was intensely dark, and focused into a kind of false but convincing clarity. Hiding inside that false clarity was a belief that this horrible state of mind was all there really was to the world when you stopped pretending that there was nothing bad going on.

Along with this state went a sense that I was doing the world a favor by constantly immersing myself in it. But while the information I was giving out was important, it was tainted everywhere by this state of mind. I felt like I was telling the world the truth, but it was only one part of the truth. Because the real truth allows for the possibility of fighting this stuff and winning. But the truth I was telling had all kinds of warping around the edges.

I felt like I was lifting away a curtain of ignorance among most people as to exactly how awful the (human, social) world can really be to anyone who isn’t valued. And in a way, I was. But I was not lifting away a second curtain. Behind that second curtain was everything good in the world, that remains hidden from most people as well. Behind that curtain is every possibility for love, compassion, cooperation, and hope. Not the fuzzy greeting card version, but something so powerful, fierce, and solid that it can evaporate all the awful stuff that lies behind the first curtain if enough people act on it.

It was painful events in my own life that led to my conviction that I had to tear aside the first curtain and make everyone stare into the awful facts I was aware of. But in doing it the way I did it, I was allowing the people who hurt me free use of my brain to hurt other people. Not that they were literally sitting there controlling my brain. But their actions caused a ripple effect. I was part of it and by my actions unwittingly allowed their influence to spread wider. This often happens to survivors of abuse and oppression. And it allows terrible things to spread around far beyond the original targets.

If at any point during this post, you end up feeling anything resembling that dark focused state, then try to resist it. Because this topic is scary, but feeling like you’re trapped in a world so horrible and terrifying that the good things about it are a long way off if they exist at all? That plays right into the hands of the kind of people I am going to write about.

2. Caregivers from Hell

The reason I have decided to write about this, despite that risk, is that very few people we aware of it. Some people work out parts of it but few people work out all of it. And in light of the way people have been excusing several recent murders of disabled people, it’s as relevant now as it was when it was written. It shows the flaws in the idea that our deaths are excusable or at least make sense. And it provides information that should make disabled people and anyone who cares about us careful in selecting, interacting with, and checking up on caregivers.

Please be clear: Not all, not even most, caregivers are like this. But just as disabled people have to be careful that caregivers don’t rob our money or possessions, we have to create other safeguards as well, to address the huge power imbalance that allows the events described in this post to happen without many people noticing or caring.

I found it in an obscure, out of print book called Violence and Abuse in the Lives of People with Disabilities: The End of Silent Acceptance? by Dick Sobsey. It’s one of those books that cites sources several times a page, and it’s out of date but as far as I know it’s the only book of its kind. I bolded parts of it for emphasis:

These five considerations for training and service delivery provide important directions for law enforcement. They also suggest two interrelated areas of concern. First, these five stated considerations arise from the perspective of family violence; however, many people with disabilities are victims of institutional violence, which has its own unique considerations. Therefore, police need training relevant to institutional, as well as to family, violence. Second, successful police work will require an understanding of the nature and dynamics of human services systems and the social realities encountered by people with disabilities, as much as an understanding of disabilities themselves. Law enforcement must be prepared to address the special needs of people immersed in the service system and the unique features of conducting an investigation in service environments.

For example, an investigation of 29 highly suspicious infant deaths in Toronto’s Hospital for Sick Children led to the quick arrest of a registered nurse for the murder of the most recent apparent victim (Bissland, 1984). The nurse was charged because she had been assigned one-to-one supervision of an infant whom the police felt certain had been murdered, and they believed that she was the only one who had the opportunity to commit the crime. However, more thorough investigation revealed that the nurse who had been charged was not working on the dates of some of the most highly suspicious deaths and had been relieved on lunch and breaks by other staff on nights that children in her care had died. The murder charges were dropped, and a civil suit for wrongful arrest soon followed. In the end, the probable murder of at least 8, and probably as many as 29, children by Digoxin poisoning went unpunished.

According to Bissland (1984), some of the complexities that thwarted police were a lack of knowledge of hospital procedures, apparent reassure to make a quick arrest so that the hospital could return to its normal routine, and an apparent lack of cooperation on the part of some hospital staff. For example, police were told that critical records of nursing assignments at the time of the deaths had been destroyed, but the missing records resurfaced long after the investigation had gone astray. This pattern of less than enthusiastic cooperation from within institutions is not unique.

Police in Grand Rapids, Michigan, were more successful in securing the conviction of two nurses in the suffocation of six nursing home patients; however, a similar pattern of institutional resistance plagued their investigation (Cauffiel, 1992). Available evidence indicates that similar serial murders in hospitals and nursing homes are likely to be as common, if not more common, than serial sex slayings or thrill killings (e.g., Hickey, 1991) that are typically given widespread public and professional attention. Despite this fact, little research has been conducted on the part of law enforcement to develop profiles of these medical murderers or specific investigative procedures for the institutional settings where these offenses occur.

Better success in policing institutional offenses can only occur when the principles of community-based law enforcement are adequately applied to the ethnographically distinct communities and cultures of hospitals, residential schools, group homes, and other service delivery systems. Police must understand the internal dynamics of service institutions to perform their job effectively within these environments. Before this can be accomplished, police, and society in general, must identify this as a law enforcement priority.

Often this commitment appears to be lacking, and abuse and violence in institutions remain hidden or are rationalized. For example, in the case of the Grand Rapids nursing home murders described above. Cauffiel (1992) quotes Ken Wood, the estranged husband of one of the convicted killers, saying:

How much life did she really take? All of the victims weren’t even living. They enjoyed nothing, experienced nothing and were going to die. The families at the time of death were relieved at the end of suffering . . . I know they had no right to play God . . . but when you decide how much of her life should be taken or lost to prison, shouldn’t it be equal to what was taken from their victims? (p. 485)

Although these were the words of a husband pleading for leniency for his wife, Cauffiel (1992) suggests this was “a view not uncommon in Grand Rapids, in Michigan, or in America, among those who became familiar with the coverage of the Alpine Manor murder case” (p. 485). This view contrasts sharply with the reality that most of the patients killed were not particularly debilitated and perpetrator Cathy Wood’s own statement that “we did it because it was fun” (quoted in Cauffiel, 1992, p. 254). Such rationalizations that trivialize serious crimes against people with disabilities can only be seen as denying their right to equal justice. Progress toward reducing risk of violence and abuse for people with disabilities quirks that equal protection of the law is applied to all members of society.

Elsewhere in the book it describes people who deliberately go into caregiving fields for the purpose of finding easy victims. So not only that. But this kind of serial killer is at least as common, probably more common, than the kind you hear about on the media, that popular culture is obsessed with. Some of them are suspected of killing hundreds of people. And yet the media doesn’t give a shit and neither does law enforcement. So you never hear of it.

And people are willing to excuse it on the grounds of caregiver stress, our purported lack of a life worth living, the idea of mercy killing, and all kinds of other bullshit. Even when the description of our impairments doesn’t match our actual ones, which happens pretty much any time anyone kills us for any reason. And even when the killers specifically state they did it for fun. Which happens far more often than you’d think. I remember one account of a woman who killed patients in a hospital or nursing home so that their names spelled out words. Of course even when caregivers are burned out, even when they believe they’re acting in our best interests, even when our purported abilities seem to match our real ones — that still excuses nothing. But it’s amazing how much the public want desperately for those things to be true even when they clearly aren’t.

You do hear of some people like this though, just hidden in various ways under other guises. Many famous figures in the right to die movement were either murderers/serial killers or wannabe murderers/serial killers, people who clearly got off on death, rather than people who had any ethical interest in the subject. And you can bet there’s more hiding in plain sight that we don’t know about. I know someone who is almost certain his significant other, active in that movement and obsessed with serial killers, has killed people in their job as a nurse. But lacking evidence he can’t do anything about it.

Mind you, even if I don’t agree with them, I know there’s plenty of people in that movement because of a sincere commitment to their personal ethics. But it takes naïveté or wishful thinking not to notice that some of the leaders are really creepy and appear to be motivated by something other than wanting to help terminally ill people die with a minimum of pain and suffering.

One reason I oppose the right to die is not because there aren’t situations that, in a fair world, I would be fine with it. But rather because, in this world, it would make things too easy for would-be murderers and serial killers. And despite claiming to be all about autonomy, many right to die organizations jump in the moment they hear about it, to support parents who murder their disabled, non-terminally-ill children without the children’s permission. That tells me way too much about the motives of some of the leaders. Things are already too easy so I can’t support anything that makes it even a little easier. But I’m getting a little off track here.

And not only all that. But even though this is known to be a big problem, the media doesn’t care much and neither does law enforcement. Which is about typical when any of the “wrong kind” of people get killed on a regular basis, whether it’s disability or something else.

But what this means is that disabled people have plenty of reasons to be wary of our caregivers. I thought of posting this because I said I refused to be alone with a caregiver after they know they’ve been fired, and someone told me they’d never thought of the power imbalance there. This sort of thing is exactly why. You never can exactly predict who will become abusive, whether it’s emotional abuse, physical abuse, or even killing. I found that out the hard way in mental institutions, where I am absolutely certain that some of the people who worked there had actually succeeded in killing other people even if they didn’t succeed with me.

But as I said before. Being completely terrified about this only plays into the hands of the people who do it. Be aware. And be careful. And take precautions. But don’t let this sort of people have control over your emotions, because that doesn’t help anybody.

Please tell people these facts though. Because few people seem to even realize that not everyone in healthcare or caregiving professions is there for good reasons. Let alone how many serial killers there have been. One group of caregivers is even suspected of 49-300 murders according to this book. That puts them up there among the worst of other kinds of serial killers.

It must seem perfect to such a person, to get to kill people without as much chance of getting caught, and even if you do get caught people may still make you out to be a hero. People die all the time in nursing homes, even people whose conditions shouldn’t be terminal. That’s taken as normal by people who equate disability with being halfway towards death anyway. In most kinds of institutions colleagues will cover for you — that’s how you get so many deaths from “heart problems” and “seizures” in people who didn’t have heart disease or epilepsy. And lots of people think disability is worse than death so killing us is doing us a favor. Or if not that, they’ll at least excuse it on the grounds of caregiver stress and burnout. And the cops don’t investigate much anyway, since we aren’t valuable to them. It all adds up to a situation where any serial killer who truly didn’t want to get caught, would jump at a chance to take that kind of job.

So let people know about this. Let people know it happens at at least the rate of other kinds of serial killing if not more. (I suspect far more, because of the ease of hiding it.) And take precautions with even caregivers you trust. But don’t get trapped in fear or despair, that’s what such people want of us. It helps them, not us. Always remember there’s that second curtain that needs pulling back, especially when dealing with truly horrific situations like this. Behind it you will find all the love and compassion required to take a stand even when nobody seems to listen.

3. Commenting guidelines

As with many such posts, I’m explicitly making clear that I won’t accept comments that in any way excuse, justify, or condone murder. Including comments that deliberately skate close to the edge. And including comments that seem to be all about compassion… except it’s always for the murderer. Those are suspect because the only murders where there’s such an outpouring of compassion for the murderer, are ones where the murder victims were a type of person who don’t matter enough for the appropriate outrage to take place. You have the entire rest of the Internet to say things like that, so don’t grumble about free speech either. I want this one little tiny corner of the Internet to be a place where disabled people don’t have to put up with that bullshit. Don’t even try to ruin that.

In this context, posts supporting the right to die movement aren’t welcome either, even by people who sincerely want to prevent suffering. The reason is that in a discussion of murder and serial killing of disabled people, discussion of situations where killing disabled people might be okay, has the effect of adding support to people who kill us without our consent for reasons that are far from benign. This happens even when the individual person arguing for it doesn’t have that motivation. So I’d like you to respect that this is not the time or the place for that kind of discussion.

Finally, please respect that people are grieving for recently murdered people from several different minorities, including disabled people, right now. The fact that the people who killed them were unlikely to be serial killers doesn’t make their deaths any less awful, and people’s widespread defense of their killers any less despicable. I hope I have created one small place on the Internet where everyone matters, even when we belong to groups of people that those with power hate, fear, and consider insignificant.

There are no unpersons here. For everyone who has ever been killed for who they are, regardless of the reason: Rest In Peace. I will not allow anyone here to speak against you.