Tag Archives: ableism

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

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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.


(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.

Don’t ever assume autism researchers know what they’re doing.

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This is my post for Blogging Against Disablism Day 2016.  Like many of my posts, although it focuses on one specific situation (autism research) it applies to a much more broad set of circumstances if you look at it closely.  I was originally planning on doing something much more ambitious for BADD, but reality (and the reality of being a disabled person) got in the way of that.  So here is a different post that was fortunately written long in advance.  I hope it can serve as a resource for a lot of people, because I’ve been asked about this test a lot, and I usually only manage to describe part of it.  This is the first time to my knowledge that anyone has said all of these things at the same time in one place.  Apologies for the lack of sourcing, but I’m a blogger, not an academic, and if I had tried to do that I would never have been able to write it.  My inertia already prevented me doing what I wanted to do today, so I’m not going to let it prevent me from posting this.  So, with no further introductory babbling on my part:

Reading The What In The What?

The state of autism research is pretty uniformly terrible.  There is good research out there, but most research is bad.  The bad research includes some of the most popular research used to support the most popular theories about how autistic people think, and why.  Psychiatric research in general has low standards for quality control, and autism research seems to have lower standards than most.  If you can come up with a theory, it doesn’t matter how hare-brained it is.  If you have the skills to get it published, someone will publish it, whether your theory holds water or not.

The research is often so bad that I can see through it.  I have no formal training in research methods or techniques. And I have no formal training in autism.  Yet I’ve been able to see through the holes in autism research so well that I have been sought out by researchers to critique their own research ideas and suggest better avenues for research and techniques to use.

One research tool that has angered and frustrated me for years, is Simon Baron-Cohen’s “Reading The Mind in the Eyes” test.  It is most often used to show that autistic people lack empathy and the ability to figure out what other people are thinking and feeling based on body language and facial expressions.  Unfortunately, the test has very little real validity:  It measures all kinds of things it claims it doesn’t measure, and fails to measure the things it claims to measure.  And very few people understand this.  They take Simon Baron-Cohen at his word, especially because he’s a Big Name Autism Expert.  But he became a Big Name Autism Expert with research that for the most part is just as bad as this test

So for a long time, I’ve wanted to tell people what I thought was wrong with the test. The way I experience it, I feel all the wrong things at once. That makes it extremely difficult to communicate.  I feel the urgency of how wrong it is and how that wrongness is affecting autistic people around the world on a daily basis.  And I get frustrated that I can’t communicate ever single problem I see in the test. I’ve done it before, but it’s always exhausting and overloading, and I never feel like I’ve gotten all the information out there.  That’s why I am making this post.

Understand that when I bring up a potential problem with the test, I’m not saying that I absolutely know that it is a problem.  I just know that it is a potential problem, and that most of the official writing about the test does not address any of these problems.   There are possible solutions — other ways to test for the same things — but they would have to be done carefully.  And probably not by Simon Baron-Cohen, because he’s proven over time that he’s more interested in creating research that appears to support his theories, than he is in finding out what is actually happening with autistic people.

So what is the test?

The Reading the Mind in the Eyes test works like this:

A pair of feminine eyes in heavy makeup in a black and white photo with four words written around it: joking flustered desire convinced

A sample question from the Reading the Mind in the Eyes test.

 

 

You look at a black-and-white photograph cropped to only include a person’s eyes.  There are four words for different emotions.  You pick which emotion you think most closely matches the emotion conveyed by the picture of the eyes.  You do this with a large selection of eye pictures.  Then they score you by comparing your answers to the answers given by nonautistic people.  If your answers match the most common answer given by nonautistic people, you are scored as being correct.  If you answers do not match the most common answer given by nonautistic people, you are scored as being incorrect.  Then your scores are compared to a particular set of norms, to see whether you “pass” the test overall, or not.

I have a lot of problems with the design and administration of this test.  As I said, some of them might prove to be real and some of them might prove to be unreal.  But I can’t imagine that the test is so good that it overcomes every problem that I see with it.  So I’m going to discuss each element that I find wrong with this test.

These are still photographs.

Like many other elements of this test, this is different from how emotions occur in real life.  When we observe someone having an emotion, we don’t observe a still photograph.

The photographs are in black and white.

Unless we have achromotopsia, we don’t observe the world in black and white.  When someone is having an emotion in front of us, they do not turn into a black and white photograph.

The photographs are cropped to include only one part of the body.

We don’t know all the different ways that autistic people might read emotion.  We certainly don’t know it well enough to crop out every other indicator of emotion in order to focus on the eyes, and then make inferences about people’s understanding of the mental and emotional states of others, based only on one body part.  Since we don’t even know whether autistic people routinely pick up on body language, let alone how, it’s irresponsible to crop the image to one body part and assume that this is how we will tell whether and how autistic people pick up on body language or facial expression in general.

The photographs feature a part of the body that autistic people are notorious for having trouble looking at, and therefore avoiding, in real life.

Lack of eye contact is a very common autistic trait.  So common it has sometimes ended up described in the diagnostic criteria.  If autistic people avoid looking at people’s eyes, then it stands to reason that it’s possible we have no practice reading people’s facial expression through the eyes alone.  So why crop an image to the one part of the body we tend to look at the least, and then make broad inferences about our ability to read body language based on our ability to understand what’s going on with people’s eyes.

Different autistic people’s descriptions of why they avoid eye contact differ.  And some autistic people make eye contact, some even make more of it than nonautistic people do.  But many autistic people describe making eye contact as involving intense anxiety, physical or emotional pain, sensory overload, terror, or a sense of being flooded with the other person’s emotions.  Any of these things could prevent an autistic person from making a lot of eye contact, or from looking at people’s eyes in general, even as pictures on paper.  If there’s something that a person has spent their entire life not looking at, then obviously they’re not going to have skills that most people get from looking at eyes.

There’s a tendency in autism research to view autistic people’s abilities in ways that other disabled people’s abilities are not so frequently viewed.  Blind people can’t usually read facial expressions.  Deaf people can’t always hear tone of voice.  But people don’t assume that blind or deaf people lack theory of mind because there are elements of nonverbal communication they don’t understand due to sensory impairments.  But that’s exactly what is done to autistic people over and over — there are things that we just plain can’t perceive for various physical reasons, and then those are used as evidence that we don’t even know other people have minds at all.

And, of course, we don’t even fully know that autistic people don’t perceive those things.  Quite often, autistic people’s abilities are compared to nonautistic people’s abilities, and not taken as possibly having ability patterns of our own that are quite different:  Many autistic people report being able to read body language but not the same body language that we’re expected to be able to read.  Many autistic people report being able to read other autistic people’s body language — or some other autistic people’s body language — but not nonautistic people’s body language.  When nonautistic people can’t read autistic body language — which is usually — they’re not told they lack social skills, they’re told it’s because there’s no body language there to read, or because we lack social skills.  But when we can’t read theirs, we’re told we lack social skills.  But that’s a completely separate problem in and of itself.

The photographs are created from actors.

An actor playing an expression is not the same thing as a person spontaneously experiencing an emotion.  Acted expressions — and understanding them —  relies as much or more on popularly understood stage conventions, as it does on understanding what emotions actually look like in real life.  So this test is essentially a test of your ability to read stage conventions In a particular context, and to do so similarly to the way nonautistic people would.  If autistic people pick up on unconscious body movements that actors would not be able to change (because they’re used to only changing movements that nonautistic people perceive, and leaving alone movements not perceived by most people), then this test would not test things accurately at all.  Like all these situations, we don’t know if that’s the case but we definitely don’t know that it isn’t the case.

The correct answer in the photographs doesn’t rely on what emotions the actors said they were playing.

The correct answer was arrived at by asking large groups of nonautistic people what the person in the photograph was feeling. The most common answer became the correct answer.  So there’s a chance that the emotion the actor was playing, is totally different from the emotion that everyone says they have.  And this is not addressed at all.

The test assumes that the most common answer given by nonautistic people is the right one.

This assumption basically makes the test a circular argument:  Nonautistic people are better at reading emotions than autistic people, because we have created a test where the correct answers were created by looking at the answers of nonautistic people, thereby ensuring that nonautistic people are far more likely to get the right answer.  And then when autistic people give different answers than nonautistic people, it’s used to prove that we don’t understand what’s going on in the photographs.  Can you see how completely circular the reasoning is there?  The way the test is created, anticipates its own solution.  If autistic people’s reading of body language differs at all from nonautistic people’s, then we must be wrong.

So what if the most common answer given by nonautistic people is wrong?  Nothing about the test even allows for this possibility.  it’s created wit the assumption that nonautistic people are right, and that the only way for autistic people to be right is for our answers to resemble the answers of nonautistic people.

The test sometimes seems to rely more on how people feel looking at the eyes, than on how the person with the eyes must feel.

I chose the particular photo from the test for a reason.  The image is of a woman’s painted eyes, looking stereotypically sexy.  The correct answer is supposed to be “desire”.  It’s not clear to me at all that this has anything to do with what the woman in the photograph is supposed to be feeling.  It seems to me that it has much more to do with how the person looking at the photograph, feels in looking at a seductive pair of eyes.  I don’t actually know what the woman in the photograph is portraying for real, but I have a strong feeling that it’s not actually desire.  Desire is what people feel looking at her.  And if this is happening in this photograph, it’s possible that it has happened in others as well.  That the feeling evoked by the eyes is seen as the same as the feeling of the person with the eyes.  Another photo of a very similar pair of eyes, by the way, gives the correct answer as “fantasizing” or something like that, and again I can’t help but suspect that’s the way the person felt looking at her, rather than what she felt when the picture was taken.

The test requires a person to process nonverbal and verbal information simultaneously, or very close together.

Many autistic people have trouble processing information quickly, and have trouble multitasking.  This can take many different forms.  But it’s fairly common for autistic people to be in a situation where we can either process nonverbal or verbal information, but not both at once.

Some of us develop stable adaptations where we always process nonverbal information but never verbal information, or where we always process verbal information but never nonverbal information.  Others of us switch around so that sometimes we process verbal information, and other times we process nonverbal information.  And some of us have a baseline state where we process either verbal or nonverbal information more readily, but can switch to processing the other in certain situations.  Some of us do process both in some situations, but in those situations process both of them mediocre to badly instead of one well and the other not at all, like we’ve spread out our information processing too thin so our abilities in both areas suffer compared to what they could be.  For autistic people who switch back and forth between verbal and nonverbal information processing, we can’t necessarily make the switch at will, nor does the switch always happen in an instant.  Sometimes it takes a good deal of time.

All of this means that a test that requires a person to understand nonverbal information while picking a word out and applying that word to the nonverbal information, is possibly putting an autistic person in a position where they are not able to show what they truly understand.

Because it’s quite possible that when left to our own devices, some of us process the nonverbal information accurately.  Possibly even more accurately than nonautistic people.  But then we are unable to make the switch to processing and understanding words while applying those words to the nonverbal information. For any of a large number of reasons.  So even if we would otherwise make accurate observations, the test may be setting us up to fail.

This test relies on the ability to apply words to observations.

This sounds like my last complaint about the test, and I’ve already described how processing differences could create problems here.  But there’s one other problem.

Autistic people who can apply words to observations at any time — well or badly — well enough to take this test, may be very different from autistic people who are unable to ever apply words to observations (or unable to do so reliably enough to take the test).  There may be some overlap between the two groups, but the two groups may also contain people whose abilities differ enough to be worth noting.

Much research into autistic cognition relies on the abilities of autistic people who can use or understand language.  It’s assumed that autistic people who can’t use or understand language well enough to take part in the research, are the same, just with more severe autistic traits.  So if a verbal autistic person has some ability to get correct answers but not as well as nonautistic people do, it’s just assumed that a nonverbal autistic person would be even worse at this than a verbal autistic person.

There are, however, a number of autistic people whose stated experiences of the world completely belie these assumptions.  I happen to fall into that group of people, myself.  This is people who have spent any period of our lives, with a severe enough difficulty with processing verbal information, that at that time we would be unable to take this test.  Those of us who have spent long enough in such a cognitive state, often report that our brains prioritize nonverbal information over verbal information.  At those times, we are not just a verbal autistic person with more severe social awareness problems.  We are a completely different kind of autistic person, with a completely different cognitive profile, including nonverbal social awareness.

Now obviously you can’t get into the head of someone who has always had and will always have so much trouble processing verbal information, that they will never be able to describe their experience.  But there are autistic people who can now ocmmunicate using words at least some of the time, but have spent enough of our lives with significant enough verbal processing problems, that we can give descriptions of what our cognition was like in the past, even if it has changed now.

Some of us describe being essentially the same as most verbal autistic people, but with additional difficulties (in a wide variety of areas) that most verbal autistic people don’t have.  But others of us describe — and sometimes are observed by others to have — abilities that are completely different in their type and pattern than anything described by the average verbal autistic person.  And some of us describe the ability to pick up nonverbal information from others, at least as well as nonautistic people do, if not better.  And there is no opportunity within this test, to test people who are in a state where their nonverbal cognitive abilities are excellent but their verbal skills are too poor to take the test.

It also doesn’t take into account the possibility of people whose ability to read nonverbal cues is excellent, whose ability to use language in general is also excellent, but whose abilility to apply language to these specific situations is not so good for any of a variety of reasons.  One of which I’ll address in my next point.

This test relies in particular on the ability to apply words to emotional states.

Even autistic people who are highly verbal can have difficulty applying language to emotional states, in themselves or in other people.  This test does not take into account the possibility that a person might be good with language, good with reading body language from nonverbal cues, but bad at applying words to emotions in particular, so they would fail the test even if they knew the right answers.  Because knowing what an emotion is, and knowing that the emotion is called ‘happy’, are two different things.  There may be autistic people looking at someone’s eyes, seeing happiness in those eyes, but not knowing that the word happiness applies to the feeling they are observing.  There’s an assumption that understanding something, and understanding the word for something, are the same thing.  They’re not.  Not for everyone, anyway.

This test gives no possibility to give a different and possibly more accurate answer.

It’s a multiple choice test.  What if all of the choices are actually wrong, and something else is actually right?  Not only is this not considered possible. (because it’s just assumed that the majority of nonautistic people are going to be right about something like this).  But there’s no mechanism to deal with it if it happens.  If the autistic person understands the body language better than the nonautistic people did, and is even able to accurately apply a word to the emotion they believe they are seeing, but the word is not in the multiple choices?  Out of luck.  Maybe an autistic person can read what that woman in the photo is actually feeling, rather than ‘desire’.  Maybe they know a word for it.  Maybe the word is ‘anticipation’ or something — that’s a completely random guess on my part, not intended to be accurate.  But if ‘anticipation’ is not on the list, then even if it’s exactly how the woman is feeling, there’s no way to pursue that as the right answer and get credit for understanding her emotions.

This test assumes that autistic people’s abilities to read body language would work the same as nonautistic people who read body language.

There’s a bunch of assumptions that go into this.

One is that autistic people and nonautistic people would, if processing body language, do it in the same way.  So testing autistic and nonautistic people on the same extremely specific situation, is supposed to give overall information, rather than testing of the specific abilities necessary to get the ‘right’ answer in this extremely specific context.  So this test is seen as testing autistic people’s ability to read body language in general and assign mental and emotional states to other people (and even to know that other people have emotional states).  When it’s actually testing autistic people’s ability to come up with the same verbal answers as most nonautistic people, to a question asked while viewing heavily cropped images of actors deliberately portraying emotional states showing a still black and white photograph of their eyes.

If autistic people have any difference in how — and in what context — we process emotional information from other people in a nonverbal fashion, this test does not allow for contexts that might differ considerably.  Just as an example, what if autistic people understood nonverbal information primarily through watching hand movements, whereas nonautistic people understood nonverbal information through the whole body, or through the eyes in particular?  This test doesn’t allow for that possibility, given that it’s still photographs of eyes.

A closely related assumption that I see happen all the time in autism research, is that the only abilities that exist are the abilities we know about in nonautistic people.  So if there are ways to understand nonverbal communication, they’re assumed that the only possible ways to understand it are ways that nonautistic people understand it.  It’s assumed to be impossible, that an autistic person could be just as good at understanding emotions from nonverbal cues as a nonautistic perosn is, or even better — but that the way we do it is so different that the test doesn’t test for it.

This is one reason that such an artificial limiting of the context creates problems.  You’re assuming that if we had this ability, it would show up in our ability to pick out the same words as nonautistic people, to describe the emotions experienced by an actor deliberately portraying the emotion in a still heavily-cropped black and white photograph of their eyes.  Maybe some of us can read elements of body language that nonautistic people can’t read.  To figure that out, you would need to have as much of the original context of the body language retained as possible.

Ideally, you would test autistic people’s responses to a person experiencing a genuine emotion, in the same room as the autistic person.  That way, the autistic person would be getting all the sensory information possible, rather than getting sensory information that is limited or distorted to include only the parts that nonautistic people find the most relevant.  And if we were observing something like the tightness and sweatiness of someone’s skin combined with subtle unconscious body movements nonautistic people don’t even pick up on?  Where nonautistic people were not relying on that information at all?  Then we would still get that information and be able to give accurate answers.  Whereas it’s possible that the test as currently conceived, shuts out the information autistic people would need to get the right answers.  And then acts like we would never have gotten the answers right to begin with.

Given that it’s well-known at this point that autistic people’s perceptual experiences are significantly different than nonautistic people’s — and from each other, often enough — then there’s no excuse for limiting the context so much that you’re potentially shutting out the information sources that autistic people actually use.  Like, this test might be useful for isolating what differences exist between what autistic people rely on to process nonverbal cues, and what nonautistic people rely on to process nonverbal cues. But it’s not useful for evaluating autistic people’s overall ability to evaluate nonverbal cues. But that’s exactly the kind of broad conclusions leapt to by the author of this test and people who use it in their studies.

This test assumes that when autistic and nonautistic people’s answers differ, the nonautistic person is automatically correct and the autistic person is automatically wrong.

This is similar to something I said earlier but it’s worth repeating:  This test contains within the setup, the outcome.  Because it’s normal entirely on the responses of nonautistic people, who are presumed to be right about these things.  If autistic people’s answers differ from those of nonautistic people, we’re always assumed to be the ones in the wrong.  Always.  When this may not be the case.

I know an autistic woman who had to guess the emotions of live actors as part of her diagnostic process.  She scored terribly on the test they gave her. That basically involved looking at live actors and ascribing emotions ot them.  The problem was, she was reading actual emotional cues, not stage conventions at least some of the time.  So her answers were different — and actually more accurate — than the answers nonautistic people assumed should happen.

I’ve done the same thing in much less formal contexts — been totally unable to read the emotion a person is trying to deliberately project for others, but been better than average able to read the emotion underneath, the one that caused unconscious body movements the person was not controlling.  I’ve had this verified by the actual people having the emotions, and I think the woman who was tested talked to one of the actors afterwards and found out she was in fact describing his real emotions as well.  So there are autistic people who read unconscious emotional cues better than we read deliberate attempts to manipulate other people’s emotional awareness — but the deliberate manipulation is what nonautistic people are reading, and they’re therefore assumed to be right.

This test compares nonautistic people’s ability to read other nonautistic people’s body language, to autistic people’s ability to read nonautistic people’s body language.

There’s a possibility that people read body language more accurately for people more similar to them, either neurologically or culturally.  If this is true, then autistic people would be better at reading the body language of other autistic people — and in particular, people with similar types of autism to our own.  When I say similar types of autism, I don’t mean the official definitions of autism versus Asperger’s, or functioning levels.  I mean deeper levels of similarity and difference in how we think, process information, move, and respond to the world around us.

So if that is true, then this test isn’t a fair comparison.  A fairer comparison would be nonautistic people’s ability to read other nonautistic people, compared to autistic people’s ability to read other autistic people.  And even better — although impossible right now, because we simply don’t have good subtyping systems for autism enough to be used in research in the ways I’m thinking of — would be to have autistic people’s ability to read autistic people who are the most similar to ourselves in terms of sensory, cognitive, emotional, and motor experiences.

I was once invited to dinner with a group of people, some of whom were autistic and some of whom were nonautistic people (parents and research professionals).  I accurately described an autistic man’s level of cognitive and sensory overload, and asked people to help him become less overloaded in particular ways.  The nonautistic people in the room were stunned at my ability to (verified by him) describe his emotional, sensory, and cognitive state in so much detail and accuracy.  They had seen nothing at all wrong.  I had sensed it all over him from a variety of nonverbal information he was blaring out like a beacon as far as I could tell.

But the way that things like this normally go?  When autistic people can’t read nonautistic people, it’s because of a global social skills deficit of some kind in autistic people.  When nonautistic people can’t read autistic people, it’s either because nothing is there to read (we’re just assumed not to be giving off nonverbal cues because the cues we give off aren’t always the same as nonautistic people’s), or because autistic people have a global social skills deficit of some kind.  So either way, a difficulty reading someone unlike yourself becomes entirely the fault of autistic people’s supposed social skills deficits.  Even though it’ she exact same problem going in both directions: A difficulty reading people whose experience of the world fundamentally differs from your own, which may be a nearly universal social skills deficit in both autistic and nonautistic people.

Generally, professionals in the autism field don’t even consider the idea that some autistic people might be as good at reading autistic people similar to themselves, as nonautistic people are at reading other nonautistic people similar to themselves.  This possibility doesn’t even exist.  So even though nonautistic people have huge problems reading autistic people, and are not blamed for that, autistic people’s ability to read people in general is tested based on reading people who are very different from us.  This would be like judging all of nonautistic people’s social awareness and social skills based on their ability to interact easily with autistic people.  Very few nonautistic people can intuitively understand how to understand or interact with autistic people, it’s one reason that autistic people are considered inherently mysterious and confusing, or to lack body language altogether.

I actually have had a bizarre experience that has happened many times.  Nonautistic people have been trying to say they know what’s going on with me, when they don’t.  An autistic person walks into the room and instantly tells them everything that’s going on with me: My feelings, my thoughts, my sensory experiences, my abilities, everything, in great detail.  And almost always, the response the autistic person gets?  “That’s impossible.  Mel isn’t using body language, so you can’t possibly be reading it.”  Nonautistic people are so used to their perceptions being all there is to reality, that some of them simply can’t believe it when autistic people see things about each other that nonautistic people can’t see at all.  I’ve at times said “But this person is completely right about me!  What she’s saying is accurate!”  And still they would talk over both of us, saying that it was impossible for the other autistic person to have figured out what I was feeling, thinking, and experiencing.

It’s not just an either-or thing though.  I am good at sensing unconscious body movements and bad at sensing the meaning of consciously applied deliberate fronts that people put on.  I may pick up on the front, but I won’t always understand what’s going on in that front.  This is with most people in general.  But the more similar a person is to me — and this can be autism-related or in other areas as well, both innate traits and life experiences — the easier it is for me to read them.  A person very similar to me stands out as if they are the only three-dimensional person in a world of flat empty figures.  I can sense every layer of what they are experiencing, both the real and the false, the confusion and the reality, just an astounding level of detail.  And this is far from unheard-of among autistic people, but none of it is measured by this test, which I o quite poorly on despite explicit verification from other people like me that I read them shockingly well in a level of detail well beyond what is covered by a test like this.

Whatever the reality ends up being, it’s bound to be very complicated, and the way this test is set up is not a fair demonstration of our abilities.  Not fair as in, what we’re being tested on is not an equal task to what the nonautistic people this is normed on, are tested on.

The experiences centered on in this test are the experiences that are important to nonautistic people.

This is a variation of the last thing I just described, but it bears saying outright:  This deals specifically with experiences that nonautistic people find important.  Now, it may be that autistic and nonautistic people find at least some of the same experiences important to understand in ourselves and in other people.  But it may also be that there are experiences specific to autistic people, that we are better at picking up in ourselves and other people, because they are so important to us.  And those are not tested on a test like this — artificially elevating nonautistic people’s scores and possibly lowering autistic people’s scores as well, by elevating their priorities over our own.

One example of a thing that’s important to autistic people is overload.  It’s not just one thing.  It can come from sensory input, thoughts, feelings, movements, effort, all kinds of things.  And it can take many forms, and have elaborate nuances to it.  Most nonautistic people can’t pick up on overload at all without being taught how, let alone pick up on any nuances of overload, shutdown, and our responses to overload.  But an autistic person looking at an overloaded autistic person may be able to see all those things in great detail, as well as emotional experiences related to them.

Because language has mostly been created by nonautistic people, there’s not necessarily an easy way to show the things that autistic people are better at perceiving and prioritizing than nonautistic people are.  Because there are often literally no words for the experiences until we invent them, and therefore there’s no standardized words that we grow up hearing the way we hear ‘happy’.  This affects our ability to communicate what we do perceive in other people’s body language, even things that we are quite good at perceiving.

The test doesn’t show where the problem comes from, if it’s a problem of naming emotions.

As just described, autistic people often grow up not hearing good descriptions of emotional and other experiences that are very important to how we experience the world.  But worse, we often grow up getting bad information.  People who can’t read us well, tell us we are feeling things that we are not actually feeling, leading us to associate the wrong words with the wrong emotions, which affects our ability to apply those words either to ourselves or to other people.  This is not taken into account when people ascribe our results on tests like this to purely innate social skills deficits.  The effect of our environment on our ability to learn these things — hell, the effect of nonautistic people’s difficulty reading us on our ability to learn these things — might as well not exist as far as most people are concerned.  Including most researchers.

Not only does the test not show whether this is the case.  But discussions of our results on the test rarely take things like this into account as possibilities.  From what I have seen, good research is supposed to consider all of the possible reasons for a particular result.  But autism research rarely does, it merely gives the explanation favored by the researcher.  If it talks about other possibilities at all, it talks about them in the most brief and cursory way possible, and doesn’t delve into issues like this one at all.

If a proper research paper were written on this test as it is, it would include all of the problems I’ve described and am about to describe, and then describe ways that further research could take these problems into account and work out what’s really going on here.  But it doesn’t, the papers on this stuff pretty much never do.  They’re supposed to.  They just don’t.  Partly for reasons I think are about laziness (autism researchers are given so much license to do bad, lazy research that it’s possible to become incredibly lazy and never even notice the degree of laziness you’ve developed), but partly because the researchers simply haven’t thought of many of this because they’re so used to coming at things from their perspective alone.

This test assumes that all autistic people are essentially alike, and does not account for significant differences between different groups of autistic people.

It’s possible — in fact I find it likely — that there are many different cognitive profiles for autistic people when it comes to processing nonverbal emotional information from other human beings.  The way this test is dealt with, makes it seem as if there’s really only essentially one type.

So there may be:

  • Autistic people who can’t process nonverbal social information at all.
  • Autistic people who process nonverbal social information roughly the same as nonautistic people do.
  • Autistic people who process nonverbal social information roughly the same as nonautistic people do, but not as well or as efficiently.
  • Autistic people who process nonverbal social information more accurately than nonautistic people do, but in a completely different manner.
  • Autistic people who process nonverbal social information about as accurately as nonautistic people do, but in a completely different manner.

And those are just some of the possibilities.  In addition, each of the last two groups?  There may be multiple cognitive and perceptual profiles within each of those two groups.  Such that there may be dozens of different ways that an autistic person processes nonverbal social information, that nonautistic people don’t experience at all.  in addition, there are of course autistic people who are in more than one of the above categories, or somewhere between the above categories, or who switch back and forth between multiple categories.

The way this test is handled does not account for an extremely diverse set of abilities in autistic people.  And that limits its ability to report on what we actually experience, by averaging out everything until you get a sort of ‘average autistic profile’ rather than a profile that reflects the diversity of autistic experiences of the world.

This would be sort of like if you took autistic people who were great at nonverbal things and bad at verbal things and autistic people who were great at verbal things and bad at nonverbal things, and averaged out all their abilities until you got a picture of people who were average in both verbal and nonverbal things.  That’s an oversimplified example but you get the point.  My suspicion from actually knowing autistic people, is that there’s a pretty diverse set of abilities to read body language and ways that we read it and that this test is not allowing for any of that diversity to be showcased both because of the limitations of the testing material and because of the ways the results are interpreted after the data comes in.

Potential Effects of These Assumptions on Future Research

Assumptions about the limitations of autistic people carry over into research in ways that shocked me when I first discovered them.  I once had a conversation with a researcher I really respected, someone who was trying to do right by autistic people and understand our emotional responses and the like.  I asked her the following question:  “I know you’ve talked to a lot of parents of autistic children.  How many of them overall told you that their autistic child is the first person to pick up on emotional tension in their household?”

I’ll never forget her response.  It went something like this:

“Oh wow.  Actually?  I think every single parent told me that.  But until now, I had instantly put it out of my mind.  Because researchers like Simon Baron-Cohen said that autistic people were mindblind, unable to attribute emotional states to others, or unable to read those emotional states in others.  So any time anyone told me anything that contradicted what the experts were saying about this, I just forgot about what I was being told, assumed the parents were just mistaken, things like that.”

She was a very intelligent researcher who was trying her best to get past her biases about the abilities of autistic people.  And it took that question to start putting two and two together.

By the way, I did end up describing to her, in detail, an experiment she could do that would test the abilities of autistic people to read certain emotions in other human beings, without requiring the autistic person to ever have to use or understand language throughout any of the experiment.  It made use of technology and techniques already available to the research lab in question.  And she told me that it was a very good research design.  I hope that she will one day use it, because I want to see if I’m right in what I guess about this situation.  If I am right, follow up research could be then done to isolation what precisely is going on when autistic people accurately interpret social and emotional information from others, and what subgroups of autistic people may exist cognitively and perceptually, both among people who can do this, and people who can’t.

This is just one example of bad research design.

Pretty much all of autism research is littered with the kinds of holes left by things like the Reading the Mind in the Eyes Test.  Much other psychiatric research is just as bad, but there does seem something particularly sloppy about a lot of autism research.  And the things said by autistic people much like myself, are finally being proven right, slowly, by researchers who take a much more accurate approach to the information.

One thing that autistic people have complained about for decades now is the Sally-Anne test.  It’s supposed to test people’s theory of mind — the ability to know that other people have mental states that differ from our own, to attribute those mental states to others, things like that.  It does so by testing whether a person is aware — in a fantasy scenario often acted out by dolls or puppets or the like — that a doll during a test is deceived by the actions of another doll.

The test as normally given, uses some of the most complex sentence structures in the English language.  This is something that I had noticed before.  When autistic people pass the test, which we often do, we are then given more and more nested sentence structures of that type until we can’t do the test anymore.  Those more complex sentence structures are supposed to test ‘second order theory of mind’ and ‘third order theory of mind’ and the like — but really they’re linguistic nightmares with questions like “What do you think that Eric thinks that Sally thinks about what Anne thinks?”  Such questions trip me up at the best of times, even when I understand perfectly well the underlying concepts.

So what some researchers did, was they did some studies of certain groups of children.

There’s a condition called Specific Language Impairment.  Children with Specific Language Impairment by definition cannot also be autistic.  They’re mutually exclusive categories.  Children with SLI have the language problems similar to many autistic people, but not any of the other problems of autistic people.

So they did a test where they had children with SLI try to complete the Sally-Anne test.  They did just as badly as autistic people with the same level of language impairment.   If this were an autism-related problem rather than a language-related problem, that couldn’t possibly happen, because children with SLI are not autistic.

Then, they did a test where autistic children were tested on false beliefs, but in a context that did not require language processing.  The autistic children did as well as — and sometimes better than — nonautistic people did on the same test.

Until these tests were done, everyone assumed that autistic people’s bad performance on the standard Sally-Anne test was because we lacked some element of Theory of Mind — or lacked the whole thing.  Rather than that we did badly because we had language problems and the test requires some pretty high-level language processing.

And another thing that angered me, was the way that they seemed to deliberately set up tests to trip us up in this manner.  Like everyone knew all along, that there were autistic people who passed the Sally-Anne test just fine.  In fact, a very large minority of autistic people.  Not just a tiny number.  And yet they still said that the test results of the people who performed badly, reflected on the Theory of Mind abilities of all autistic people.   Even though there were people passing the test just fine.

But they didn’t stop there.  This is the part that pisses me off the most.  When autistic people did okay on a Sally-Anne test, we were simply given more and more linguistically difficult tests, until one of them finally tripped us up with its ridiculous number of nested sentence structures to process.  So “What do you think Sally thinks” became “What do you think Sally thinks about what Eric thinks?” Which in turn became “What do you think Sally thinks about what Eric things about what Maria thinks?”  Just keep nesting more and more levels of linguistic hell, until the autistic person is tripped up and fails the test.  Then, at that point, say that they lack a different ‘order’ of theory of mind.  You start saying “Well, some autistic people have first-order theory of mind but lack second-order or third-order theory of mind.”

That pisses me off because it was like they were deliberately setting us up to fail so that they could prove we really had the problem that the test showed we didn’t have after all.  So a test shows we have theory of mind. Devise a harder test until autistic people can’t do the test anymore.  Then claim that whatever the harder test is that finally made them fail, was. actually a more sophisticated test of the same thing you were testing them on in the first place.  So “They may have passed a simple theory of mind test, but more sophisticated theory of mind tests showed they still had problems with theory of mind after all.”  In this scenario, it is nearly impossible for an autistic person to win, even if their language problems are relatively subtle most of the time.

How to dismiss everything autistic people have to say about ourselves…

The results of these tests and more, have been used to dismiss the observations of actual autistic people about the workings of our own minds, for a very long time.  It’s true, of course, that everyone can be deceived about how their mind works, and this is one reason that cognitive research exists in the first place.  It exposes things in our cognitive blind spots about ourselves.  But even so, most research assumes that the average person knows at least something about their own mind.

So most psychological research assumes that people are basically accurate in reporting their experiences, but may have certain biases or blind spots that prevent them from understanding some aspects of those experiences.  Psychological research into autism assumes that autistic people can’t understand or report anything of value about ourselves unless it dovetails with what they already believe about us, and that our having insight into ourselves is the exception rather than the rule.  So most people are thought to be basically accurate with some blind spots, autistic people are thought to be all blind spot and little to no accuracy.

And this includes accuracy about things where literally the only person who can say how they experience something is themselves.  Like, if you think in pictures (which some autistic people and many nonautistic people also do), you know that because you see the pictures inside your mind.  Nobody else can come along and say “you’re just deluded, you don’t actually see pictures in your head”.  Because that’s a purely subjective experience, that only the person reporting it can know for sure whether it’s real, and how often it’s real, and in what manner it is real.  But many researchers act like autistic people can’t even know those things about ourselves.  We’re thought to have no capacity for any insight into uur inner lives and experiences.  Even though, when lots and lots of autistic people report a particular experience (spontaneously, without being pressured or coerced into believing it in some way), pretty much always that experience is eventually shown to be accurate, by scientific research.

Another thing that happens is that random things we can’t do get described as having to do with particular theories, when this makes no sense as an assumption.  For instance, our ability to read body language is constantly equated with mindblindness and lack of theory of mind.  Blind people can’t read body language, but people don’t say they’re constitutionally incapable of understanding that other people have subjective experiences of the world.  When autistic people can’t read body language, however, it is always cited as support for the idea that we are constitutionally incapable of understanding that other people have subjective experience of the world.  Even though our reasons for being unable to read body language may be as sensory-based as blind people’s are.   Similarly, language processing problems were for a long time — and it continues to this day, despite research showing why it’s a bad assumption to make — used as the core piece of evidence that autistic people lacked Theory of Mind.

So it’s sort of like, they already decided we lacked Theory of Mind, and then no matter what thing we could be shown to do badly at, that thing was written up as if the thing we did badly at, we did badly at because we lacked Theory of Mind.  So any and every ability we could be shown — rightly or wrongly — to be bad at, was a sign we had poor to nonexistent Theory of Mind.  And entire theories of what autism is, have arisen with those studies at the base of them.  And even though those study results have been seriously called into question by modern research, the Theory of Mind theory continues to be trotted out as if it is meaningful.  Even though it’s built with no foundation whatsoever.  It’s like we’ve done the research that removes the foundation, and yet we keep building on that foundation as if it’s still there.

And again understand — I have no training in research design and no training in autism.  And yet I can see all these holes in autism research, holes that actual well-regarded researchers such as Morton Gernsbacher have specifically and publicly praised me for noticing.  Imagine if I did have the training to understand research design much more intricately than I do.  Imagine what holes I’d be able to point out then, and what research I’d be able to design.

And I’m just one person.  There are tons of autistic people who are capable of similar insights into how messed up the current research is.  Autistic people are not automatically capable of seeing these holes.

Some of us buy into everything we’re told by Autism Experts about being autistic.  Researchers have specifically told me they picked me to work with because I pretty close to never do that these days (I certainly used to do it to a larger extent than I do now).  Whereas a lot of the autistic people they knew, filtered their experiences so heavily through things like Mindblindness and the Extreme Male Brain theory and the like, that the researchers were afraid they weren’t getting accurate information out of them, just regurgitated information.  There’s a related problem where autistic people will hear something from another autistic person, and assume that they have to be similar to that other autistic person.  So if Temple Grandin says autistic people are picture thinkers, suddenly you’ve got all these autistic people saying they’re picture thinkers because Temple Grandin is one.  Even if they’re actually not.

And there are good reasons autistic people do this, some of which are related to general human traits, some of which are related specifically to autistic traits, some of which are related to traits about how autistic people are treated throughout our lives.  So some autistic people may be doing it for reasons that relate to the thing where the more often you read a statement, the more true it feels, something that is true of most human beings whether autistic or not.  Some autistic people may be doing it for reasons that have to do with common autistic traits such as echolalia, poor spontaneous expressive language, language comprehension problems, and difficulty with certain aspects of sensory processing.  Some autistic people may be doing it because of how we have been treated all our lives for being autistic — if you grow up with nobody ever listening to you, being told always that you are wrong and can have no insight into yourself, being (deliberately or otherwise) ridiculed or punished whenever you communicate something of your experience accurately?  You may well start repeating what you’ve been taught to believe about yourself, rather than what you actually experience.

So there are lots of good reasons that autistic people can have trouble reporting our actual experiences around researchers.  But most of us can do it well at least some of the time.  And when we do so in large enough numbers, we usually turn out to be shown to be right.

I also worry about minorities within the broader group of autistic people.  Because I have a lot of traits that are relatively unusual for an autistic person who can use language.  Because those traits tend to make people less likely to develop language.  Not make it impossible, just make it harder.  So a larger number of autistic people without good enough language skills to describe their experiences, exist, than exist people like me who can at least some of the time describe our own experiences.  So anyway — at least within the realm of autistic people who can talk about our experiences, I often find myself an extreme minority.  An extreme minority both in my areas of greatest weakness and in my areas of greatest strength.  People like me get left out of the research results because research takes all autistic people in averaged-out form.  When you average out a huge group of people’s experiences, outliers like me get drowned in the greater sea of data, and you miss out on the great diversity that exists within a group of people like autistic people.

For too long, autistic people have been told who we are, instead of allowed to tell the world who we are.  Test like the Reading the Mind in the Eyes test tend to fill me with an instant mini-explosion of rage.  Because I can see each and every thing I just described to you.  Only I see it all at once.  Like just this ocean of wrongness that washes over me.  And I can see all these things wrong, and feel that the are wrong, and understand that they are wrong.  But until relatively recently, it was so hard to tell people why they were wrong, that most of the time I’d just splutter incoherently or tell them one or two things without giving them the whole picture.

This post is designed to give as broad a picture as I can of what’s wrong with that test, and what the consquences are of it being so wrong.  Please refer back to it as often as you have to, if you’re truly interested in figuring out what’s potentially wrong with both this and other tests used in autism research.  I may not be an academic writer, and I may not have credentials, but I’ve been told by people who are, that I do have insight they need and don’t have.  So do lots of autistic people who lack an education in this field.

If you use ideas from this in research or elsewhere, please give me credit.  Autistic people are often not given credit for our ideas when people mine them for research, so this is more important than usual.

Love, Fear, Death, and Disability

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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.

Blogging Against Disablism Day, May 1st 2014

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

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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.

Blogging Against Disablism Day, May 1st 2014

When we died, we found each other.

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I was there
I was there and I felt
Your hands around my neck
Hands on my chest pushing me underwater
Tying me into the car and starting the gas
The hot poker
The bullet
The knife
I was there and I felt
Where is the air
Why isn’t my body working
Why can’t I get air
That overwhelming hunger for air
And then…
And then…

But I was there and I felt

The one person I was supposed to trust more than anyone in the world
And she abandoned me and spat my love back in my face

And I was there and I felt

The one person I never trusted
Even though everyone else said she was a saint

And she was a saint because of me
She was a saint for putting up with me
She was a saint…

…because the only person who would spend any time around me
the only kind of person who would ever want to
the only kind of person who could care for a person as
broken
difficult
damaged
destroyed
nonexistent
unfeeling
uncaring
noncommunicative
as me
would be a saint
wouldn’t they?

And since only a saint would take care of me
Then it could only be expected
It could only be expected
That a normal person
Could never handle
The burden
Of a person like me
(and therefore)
That it’s understandable
It’s understandable if
If someone would
Just want
Me to die.

My suffering was over, they said at my funeral
(When I even got a funeral, which was not always)
My mother was sentenced to
Five years
Fourteen years
Twenty years
Of living with me
(Even when she didn’t live with me at all)
She did not need any further prison sentence
For my murder

When I died, I stopped being separate
When I died, we found each other
We found each other
All the murdered disabled children
Cast out of life by those we should have been able to trust
And we held each other
And we became each other
Now we speak with one voice

Understand this first and foremost
No matter what you have heard about us
We loved
We could love
That we could love means
That we felt what you did
We felt it then
We feel it now
We know what evil means
Because we know love

Now understand this:

We were there
We saw
We knew
We understood what you never thought we could

And now we look you in the eye
And in the name of love
In the name of everything holy
In the name of the union we have found
(Which is nothing, nothing, nothing less than the deep universal love that They said we could never feel)

We say
Not
Ever
Again

Blogging Against Disablism Day, May 1st 2014

Feeding tubes and weird ideas

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My favorie BADD post: Tube-ageddon.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

A bunch of stuff that needed saying

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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.

I’m starting to heal here.

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The hospitalization started awful but got better after the Internet convinced the hospital that lots of people care what happens to me. Since not everyone has that resource, my goal once I get better is to work hard on a non discrimination policy that will prevent any other patient from going through what I went through.

I don't have the energy to go through the whole story again. But basically my gastroparesis was getting so severe that I could no longer keep up a minimal Iiquid diet and was also aspirating frequently as the gastroparesis got more severe (due to gas bubbles from food sitting forever in my stomach), leading to getting pneumonia so often that it was clear my life was in danger. And I was dropping weight in ways that nobody should ever drop weight, fat or thin. So I needed a feeding tube, the ER docs suggested a feeding tube before I even said I needed one, everyone actually on my case knew I needed a feeding tube… and I spent a weekend being pressured, by strangers who were not specialists in any of my conditions, subtly and not so subtly to accept death instead of a feeding tube.

The above picture shows I got the feeding tube, and am using it just fine for food and medication. Not without a whole lot of unnecessary pain and difficulty. Fortunately I have outside witnesses to nearly every single thing that occurred in this place. I can't go into it all because it's too fresh in my memory but someday I'll write more. I just wanted to let people know I'm still here, no thanks to some assholes I met along the way. But there have also been a lot of really great people, especially nurses, working here. And the longer I've been here the less crap I've gotten from people. Especially as they see the feeding tube working wonders in all sorts of ways.

(For anyone curious this is a GJ (gastrojejunostomy) tube, with entries into my jejunum and stomach. It allows me to completely bypass my stomach for nutrition and medications, and to drain gas and fluid from my stomach to help prevent aspiration. I'm already gaining back the weight I lost, I'm far less nauseated than I've been in years, and eating is incredibly easy. There may be complications along the way, but I haven't experienced one yet. And since the complication of the way I was living was eventually going to be death, I'm quite willing to take the risks involved.)

The gastroparesis diagnosis was more than confirmed a month or two ago when they made me eat radioactive eggs and traced their movement through my stomach. And the repeated aspiration pneumonias were resulting in some gnarly cat scans. It got so I was on antibiotics more often than not and getting sicker and sicker and something had to stop. I don't know if I'll stop aspirating entirely at night, though I sure hope so. But it was happening more than once a week for the past few months and it hasn't happened at all since the feeding tube was placed. But it was a fight the whole way to get the right treatment that even all the doctors who really knew my case insisted I needed, to get the tube inserted in a way that wasn't horrendous, to get adequate pain care after the massive fail with the local anesthesia, and to be allowed a few days to learn bed mobility and eventually transfer skills after the surgery (they seemed to believe that if I didn't learn instantly I'd become lazy and never learn, and refused to acknowledge any of the slow and steady progress I was making just because it didn't happen all at once).

That's more than I intended to write. I'm tired. I should be home in a few days, at which point the trick will be getting all the support staff trained in tube care. But they're already starting the trainings. So hopefully going home won't be too awful. I desperately want to see Fey again. I've been seeing way too much of the inside of this hospital and not enough of anything else ever since August when my first big aspiration pneumonia + gastroparesis clusterfuck hit. It turns out the gastroparesis is the answer to the “chronic nausea” I'd had, as well as the fact that I felt better if I could fast for extended periods periodically, so this has been going on a long times they just didn't pick up on it until I stopped eating solid food (and then only after they saw me not eating, because they didn't believe me as a fat person that I wasn't eating, even when I dropped 40 pounds too fast for it to be anything else).

Anyway I'm rambling. I want to get out of here but I have to stay the weekend. I don't want anyone else to ever be pressured towards death in the way I was (sometimes quite openly) yet I'm sure it happens all the time and I have to find a way to stop it. I never envisioned myself in quite this situation for some reason, even though I've been in similar ones. Feeding tubes seemed like things that happen to other people. Not that I mind it. I completely love the tube. I just never realized my “little nausea problem” would rapidly turn into a severe condition that demanded this kind of measures.

I want to go back to advocacy especially after the things I've seen happen to me and others in this hospital, I just have been too sick to handle it, and the lingering cognitive problems from delirium last fall haven’t helped. But if I can do anything about anything I will help the disability communities locally handle this situation because its horrendous.

 

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

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“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.

“I don’t know that person’s program.”

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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.”