6:14am March 18, 2014

There was a conversation going on about the word able-bodied.

youneedacat:

clockworkcrow:

youneedacat:

Note that I’m not telling anyone else how to think about this, and I don’t really care what word you use or don’t use. To me it’s more important what you mean.

I’ve heard some disabled people people argue that even cognitive and psychiatric disabilities are taking place in the brain, so they’re physical, so it’s okay to say people with these disabilities are not able-bodied.

I’ve sometimes used the term able-minded for people without cognitive disabilities.

I tend to have a hard time changing the words I use, so even when I’m uncomfortable using able-bodied to mean nondisabled, I do sometimes use it.

I don’t know, I guess I’m kind of ambivalent. And to me it matters what the person means.

Like…

Three different disabled people will be saying the word ‘able-bodied’ to mean ‘nondisabled’.

One of them uses it because to them, even cognitive impairments are physical at root. That’s fine with me.

One of them uses it and means the same thing as nondisabled, they just aren’t able to pull out all the ‘right’ words all the time. That’s fine with me.

One of them uses it because they’re really not thinking much about cognitive disability when they think of disability. Like they just see disability as meaning physical disability only. And that’s not fine with me. (It also wouldn’t be fine with me if they started using all the right words but retained that bias. Again, what’s behind stuff is more important to me than the stuff itself.)

Personally, I’ve found simply ‘abled’ ‘abled people’ to be a good compromise. If I am disabled, then they are abled. So of course it refers to people who are both physically and mentally nondisabled.

I’ve never been able to bring my brain to use ‘abled’. I’ve sometimes used ‘enabled’ though, to make the point that a huge part of disability is about the fact that society enables some people and disables others. But then people never know what I mean. My favorite term is nondisabled, it simple and to the point and can mean anything. But other terms slip out sometimes just because of how my brain works.

Another area I have much more trouble using words for is psychiatric disability. Sometimes I use ‘mental illness’ just because the term is so heavily embedded in our language, but I don’t really like that term because it is so heavily tied to a viewpoint where mental illness is just an illness the way physical illness is, and I don’t believe that. In some contexts I use ‘crazy’, but I know that’s offensive to a lot of people. It’s still my favorite of the various words to use, because it’s a word that’s heavily embedded in our language, does not contain any assumptions about how it comes about or what it is (since I don’t even know and neither does anyone else, really, yet), and I have a soft spot for words that are already a heavily understood part of the language. (As such, I’ve also used mad, lunatic, things like that, which may also reflect my connections to the ‘mad pride’/’lunatic liberation front’ type communities, even though I don’t consider myself part of those communities because they get kind of fucked up.) I sometimes use psychiatric disability, which may be my favorite of the more politically correct words to use, because it puts it firmly in the camp of disability, but I still don’t entirely feel comfortable with it because I don’t like the idea that psychiatry has any claim on us. But I like it a lot better than mental illness.

But as I said, I’m not trying to dictate what other people use for words, these are just my personal preferences. And believe it or not I do have plenty of preferences about words, I just don’t usually tell people about them because… in so many communities right now, stating a preference when it comes to words is taken by a lot of people as making an insistence that everyone conform to your preferences. Which isn’t what I want to do at all. These are my preferences, and other people will have completely different or even contradictory preferences for just as good reasons as my reasons. So I think everyone should use the words they personally think are best, to the best of their ability, rather than making an across-the-board prescription for what words to use and what words to avoid. Because most of us have preferences and most of them clash with each other at least some of the time.

But another problem I have is that with my word-finding issues and complicated echolalia-based language, I can’t even follow my own preferences let alone the preferences of others. Like I hate the word mental illness, but I use it all the time because it’s what pops out when I try to describe it. I’m just not capable of directing which words come out of my mouth. In fact that’s a good example — words never come out of my mouth, but that’s still the word I use for it and it is quite difficult for me to change it. This is one of many reasons I tend to give people a good deal of slack around language usage, because I need that slack myself.

Out of curiosity, do you think you could explain what you mean by saying you don’t like mental illness it’s tied to the viewpoint where “mental illness is just an illness the way physical illness is”? I’m not sure I fully understand that.

But yeah, there’s a lot to work through when it comes to figuring out the appropriate terms to use. Have you heard the terms neurotypical versus neuroAtypical or neurodiverse?

But I also totally get having a hard time directing words; sometimes I can barely get ANY word out, and lots of times I just completely forget what other people have said about words relating to them and it’s just. It can be a mess for people who have a lot of difficulty processing things.

Fair warning that I’m going to discuss my experiences with psychiatric problems and the psychiatric system as you get further along in this post. But the beginning part is more general and not my specific experiences.

The idea of mental illness as an illness in exactly the same way a physical illness is an illness was at first meant to be kind of an analogy, and then it got out of hand and people literally started saying things like “schizophrenia is exactly like diabetes” and by extension “schizophrenics who don’t take neuroleptics are like [insulin-dependent] diabetics who won’t take their insulin” and lots of other ideas that are really disturbing in the degree to which many people believe them.

In reality, I think mental illness is far more complex than that. I know that “it’s an illness the way physical illness is an illness” can be a way for some people to try to get away from the stigma of being told that it’s a moral or character flaw (so I’m not going to try and tell people, as a blanket statement, not to use that idea when necessary), but I don’t think that most of the time that’s a very accurate way of looking at it as a whole. In fact, I don’t think there is a way to look at mental illness as a whole because it’s not all one thing and it’s far more diverse and complicated in its causes than just about any other disability category.

I think we’re going to find in the future that some mental illness should simply be considered a neurological condition. In fact, some conditions have already made that transition. Epilepsy used to be a mental illness and now it’s a neurological condition. Autism was originally conceived of as a childhood psychosis, and now it’s mostly considered a neurodevelopmental disability, although it still retains some aspects of being considered psychiatric. Many things that used to be considered catatonic schizophrenia are now finding their place as conditions that aren’t even considered schizophrenia at all. (Although “schizophrenia” is kind of a non-condition, given that it’s basically a false explanation made up to tie together four or five totally unrelated collections of traits, but more on that later.) I’m sure some other things that are currently considered mental illnesses will go in that direction as well.

But other things are more complicated than simply being a way your brain is wired. And certainly are far more complicated than the ‘neurotransmitter imbalance’ that many different conditions are blamed on today. ('Neurotransmitter imbalance’ is a very crude way of either explaining why certain psych drugs sometimes seem to work, or of persuading people to take said psych drugs. It’s not a proven thing in any but a minority of situations. In some situations, conditions attributed to a neurotransmitter imbalance because of which psych drugs worked on them… they found out the psych drugs were working for a reason that was totally unrelated to the neurotransmitter they assumed was involved, or sometimes found out that the drug wasn’t working at all if they did actual double-blind studies. So I’ve always been very cautious of automatically believing such explanations. I’m certain that neurotransmitters being at different levels can cause psychiatric problems, but whether those psychiatric problems are always caused by neurotransmitter imbalances is a different question altogether, and I’m pretty sure the answer to whether that generalization can be made across the board is always going to be no.)

There are definitely times when psychiatric conditions are caused by things that are not an illness. For instance, they can be caused by unpleasant or traumatic events, long-term exposure to really crappy ways of thinking about the world, really bad physical and social environments, or a collection of thoughts or thought-habits that all lead to really bad places. (Note that even when you can think your way into a mental illness, it doesn’t mean you can snap your fingers and get out of it. It’s never that simple. So don’t worry, I’m not saying that. I’ve actually been there, and it’s not that simple at all.)

Other times they’re definitely caused by something direct and physical. There are a number of physical illnesses that cause psychiatric problems far more often than other physical illnesses. And I think that’s the closest situation to a true 'mental illness’ in any literal sense.

But basically, I just don’t think illness is a generalization that can be made about these things, and sometimes I think it’s a spectacularly bad analogy, even though I understand why it’s a huge step forward from treating the problem as a moral or character problem.

Neuro-atypical/neurodivergent/neurodiverse works in situations where the underlying problem is neurological, but falls apart in situations where it isn’t. (And don’t ever make me say “neurobiological disorder” or “NBD” because that has really bad associations with NAMI for me. :-P) It’s also not specific to even the mental illnesses that would fall under that category, because it can also apply to everything from multiple sclerosis to intellectual disability.

One unfortunate byproduct of treating mental illness like physical illness, and forgetting that these are not identical ideas (and that mental illness is at best an analogy or metaphor) is the way they’ve treated the diagnostic process over the years. They’ve come up with names for things, given them diagnostic criteria, and then as long as the name gains enough usage over the years, they rarely go back and look to check whether the name, or the criteria, make much sense. (And when they do go back and check, they often do so in a way where the reasoning is so circular that it really doesn’t make all that much sense.) It’s a wonder that any psychiatric category has ever managed to be useful, given the extremely low standards they have, and their tendency to treat things as more real simply because the names have been around longer.

Like, if schizophrenia were a physical condition, it would have long fallen apart by now. Like they’d have scrapped the original category of schizophrenia altogether and come up with a variety of better categories. Instead, what they do is periodically remove some people from the category of schizophrenia, put them in another category, but act like there’s still some kind of 'real schizophrenia’ that is being distinguished from all these people who are leaving the category. Even now that they’re acknowledging there’s something a little wrong here, by calling it 'the schizophrenias’ instead of 'schizophrenia’, nobody seems to quite have the nerve to say “Bleuler didn’t know what he was talking about. He took a bunch of unrelated conditions and stuck them all together, because he claimed they all stemmed from the same underlying cause, and then he gave that underlying cause a name. We now know that his idea of the cause is bullshit. We know now that his idea that all these things were one and the same thing underneath is bullshit. So we know now that the category is bullshit, let’s completely scrap it and start from scratch without making any assumptions at all.”

But psychiatry (especially, the branch of psychiatry dealing with mental illness and its classification) doesn’t work like that. If it worked like that, it might deserve much more to be called a science than it does, at the moment. For way too long, anyone with a theory and sufficient book-learning, who can write in the proper manner and jump through the right hoops, can get their theory published. For way too long, they’ve relied on people making guesses in the dark, who then stand on top of the shoulders of other people who’ve made guesses in the dark, who then stand on top of the shoulders of other people who’ve made guesses in the dark. And very few people have acknowledged that a huge amount of the body of knowledge about mental illness is just a bunch of people standing on layer after layer of thin air. It’s sort of like nobody wants to admit that the stock market is built on top of nothing at all, because then they’d see that total failure is built into it. It’s sort of an Emperor’s New Clothes situation, except instead of just “what wonderful clothes you have”, it’s people writing treatises on the clothes, and then other people writing treatises on the treatises, and then other people writing the treatises on the treatises on the treatises, for generations. And all those generations, if you trace the ideas back… people tend to assume that just because an idea has become established it means that it’s real. When if you trace it back, you start seeing that somewhere along the line someone just pulled the idea out of their ass, and then everyone after them believed the idea. Sometimes they manage to pull a good idea out of their ass, but it’s still an ass pull.

And anyway… with that background… a lot of people assume that because a mental illness has a name, and diagnostic criteria, and a wide body of knowledge based on decades or centuries of papers that have been written, then it has the kind of scientific legitimacy that a physical illness does. And that making a direct analogy between a mental illness diagnosis and a physical illness diagnosis is not only possible, but actual reality. And that doesn’t work, because they’re not arrived at in the same way, they’re not necessarily caused by similar processes. But because the diagnosis and classification of mental illness has taken on all the trappings of ordinary physical medicine, people assume that what’s going on underneath it all is just as similar as the trappings are. And sometimes, maybe, it is. But often, maybe even usually, there are profound differences between the two things. Hell, even when there’s a very physical, neurological basis for a mental illness, it doesn’t mean that the current diagnostic trappings are an accurate way of looking at or classifying that neurological basis.

I remember being very weirded out when I was in the psychiatric system. Because we were heavily encouraged to view severe emotional distress as an illness. I remember feeling vaguely betrayed or like I was being cheated, because I would go into a mental institution for suicidal thoughts, and people would tell me “you went to the hospital because you were sick”.

And, no. A mental institution is a hospital only in name. The vast majority of what goes on there is not medical treatment. It really bothered me the way that they would do things that had no medical basis at all, and call it treatment. They even had this fancy word, 'milieu therapy’, which literally meant that simply sitting in a dayroom with a bunch of other inmates was supposed to have mysterious therapeutic properties of some kind. Most of what we did was get herded around to different activities all day long. Some of the activities were helpful, most were not, many were the opposite of helpful. Even those things that could be considered helpful could hardly be considered medical. And even though I desperately wanted to be somewhere where I was getting help, I didn’t need medical treatment, and I didn’t have a disease. Like I’ve been in physical hospitals for physical diseases, and I honestly hate those plenty as well, but at least they were actually doing medical treatment, and in many ways it’s completely different than a mental 'hospital’.

The entire extended metaphor they use in the psychiatric system where all treatment of mental illness is made, by way of analogy, exactly equivalent in some way to physical illness… it felt like one giant lie. It felt like a betrayal. It felt like something that everyone was supposed to say was true, but it wasn’t true. It was just a word game. It was “If we call this an illness, if we call this treatment, if we call this a hospital, if we just will this all into being by using the same words for everything even though they're totally different, then somehow, it will become real.” A place doesn’t become a hospital because you call it one. A (real or purported) solution to a problem doesn’t become a medical treatment just because you call it one. And the problem you’re there for doesn’t become an illness just because you call it one. Literally the only thing we got that even resembled a medical treatment was our medications, and those only seemed to be working for a few of us.

I do understand the point of the charade on one level, though: To get medical insurance to cover things like medications and therapy, in a world where the only way to get that kind of assistance is to be considered sick in some way. However, that problem would be completely solved if we just didn’t make it necessary for people to be sick in order to qualify for help. But I honestly don’t think that “because people need to be considered sick if insurance is going to pay for things” is actually the reason that mental illness started being considered the same as a physical illness, nor do I think it’s the origin of that weird extended metaphor where everything related to it gets called all the same words as the situations and treatments surrounding physical illness.

So I’m not bothered when people use ideas like this in order to get insurance, although I’d rather make a world where it’s not necessary to play word games in order to get insurance coverage.

But I’m very bothered about that lie that we were all being told, and it was a lie happening at a very deep level. And it was “Everyone is going to use all the same words for mental illness that we use for physical illness, and then it will, in reality, be the same.” That’s truly mind-bending to be around for any length of time. Like it feels like an attack, it feels like being pelted from all directions with unreality. And unreality is the last thing you need when you’re dealing with problems that may already make your grasp on reality kind of tenuous.

Weirdly, the closest experience I’ve ever had to a true mental illness, as in an actual illness that has mental effects, is delirium. And very few people call delirious people mentally ill. In fact, people go to great lengths to distinguish delirium from mental illness.

Meanwhile I’ve had other experiences that were not physical in nature, that were not illnesses in nature, but that absolutely fall under the category of what most people call mental illness.

At any rate, I don’t think there’s any way to generalize about what mental illness is, and I think generalizing that it’s all just an illness like a physical illness is one of the least accurate generalizations you can make about it.

I think we’ll eventually find that some things currently called mental illnesses are basically physical conditions, either neurological wiring, or some sort of actual disease. (Weirdly, the DSM already tries to separate out true disease causing mental effects from mental illness. It tends to have a category of “organic” disorders (physical diseases causing mental effects) that’s completely separate from the rest of its categories.)

But I don’t think that’s going to end up being all, or even most, things. And if it’s done at all scientifically, the categories they come up with won’t look anything like the categories we have today. They’d honestly do best to forget everything they think they know, and look at everything with a completely open mind. And test things out in ways that make sense, rather than just piling layers of guesswork on top of each other for generations at a time.

And I think they’ll also find that many things have multiple possible causes, sometimes several things in combination, sometimes more one thing than others.

But I’d honestly like to see psychiatry (the part that deals with treating and classifying mental illness, at minimum) get dissolved, and be taken over by some combination of neurology, cognitive science, sociology, and things that don’t even exist yet but that are better than what we have now.

By the way, psychiatry does in theory acknowledge that mental illness has multiple causes. One word that I remember from the only psych class I ever completed was the 'biopsychosocial model’ which was supposed to say that some elements of mental illness come from biology, some parts come from the way we think and feel inside ourselves, and some parts of it come from the social environment around us. Which is a very good idea but I rarely see people acknowledging that kind of complexity.

The areas where mental illnesses are least like an illness or disease, is in the many ways that they can be caused and made worse by our thoughts, our emotions, and the habits we have of how we think about ourselves and the world around us, and how we organize our thoughts and our internal behavior and such. Not that all of them are caused that way, but most of them are at minimum made worse that way, and many actually have that as the main cause, and the main solution.

In those cases, the solution isn’t going to be as simple as 'just deciding to be better’. (And one reason it’s hard to talk about this, is that if you don’t qualify it really heavily it can sound like “it’s all your fault” or “you could get better if you wanted to” or things like that. I can’t emphasize enough that this isn’t what I mean, at all.) When there is a solution that lies in changing how you think and feel, that’s extremely hard work that generally takes years if not a lifetime. Therapy is not always going to be the answer in these situations either – sometimes therapy only encourages the kind of thought patterns that are causing the problem or making it worse. Sometimes the solutions aren’t going to be found anywhere within the psychiatric system, and sometimes if there are solutions within the system at all, they’re only going to be found in obscure corners of the system that few people can find or gain access to.

And while some people would argue with me here, I also think there are times that what gets considered mental illness is only going to have spiritual solutions. I don’t mean like exorcism or seeing a faith healer, and I don’t mean that any particularform of religion or spirituality is going to be the right one for everyone, but there are times when a person’s depression is related to feeling cut off from something that they only end up being able to get back through some form of spirituality. (Although spiritual practices can also cause some things that currently get considered mental illness, so this isn’t simple.) And plenty of other things too. And that’s pretty much ignored in any model that sees all of these problems as simply a disease. You can’t cure ALS with a spiritual practice, but there are some things considered mental illnesses that go away once someone’s dealt with certain things spiritually, and that to me marks a huge difference between something that is a disease and something that is not a disease. (There are also mental illnesses that can’t be cured that way, some of which because they’re as physical as ALS is. But again, there’s no generalizations, and that’s sort of my point.)

So I’m not comfortable with the idea of mental illness as being, across the board, “an illness just like a physical illness is an illness”, because there are so many things that are different from physical illnesses. So I’m uncomfortable with the term mental illness (even though I use it a lot), partly because it reminds me too much of that whole thing of “if we just talk about this all using the same words as we use for physical illness, then it is true”. I mean, if you think about it, the entire culture that’s been built up around mental illness as a disease is based on using a lot of the same words – illness, 'got sick’, hospital, treatment, symptom, diagnosis – and presuming that the same thingis going on beneath the words. And my suspicion is that sometimes there really is a disease going on, but often there isn’t, and the language we use can obscure the fact that this is not always anything like a disease.

But all that said, my usual disclaimer: I am not telling anyone how to talk about this, or even how to think about this. If you’re most comfortable with the term mental illness, I won’t stop you from using it. If you’re most comfortable thinking of it as an illness like a physical illness, I won’t stop you from thinking that. You may have life experiences that are vastly different from my own, and I’m not going to tell you what to think or how to talk. My language preferences are my own, and I can’t even follow my own preferences half the time let alone tell anyone else how to follow them. And they’re based in my own experiences of the world, my own experiences of psychiatric problems, my own experiences of the psychiatric system, and the solutions I’ve personally found for those things.

In particular, I have had a lot of direct personal experience with mental illness that is caused by psychological, social, situational, and spiritual problems, that literally could not be solved by anything psychiatry could offer me, even when I desperately wanted it to be solvable that way. And that experience leads me to be very wary of generalizing about mental illness and its causes. I’ve also had personal experience of mental illness that seems to be much more a neurological or hardwired thing – but even that had elements that work very different from a physical disease. And seeing all the things that do not work the way the “this is a disease the way diabetes is a disease” idea should predict they work, and having to live with the negative consequences of being surrounded by the idea that mental illness is just a disease like any physical disease, I’m wary of generalizing like that. Extremely wary. And the term 'mental illness’ reminds me too much of the whole string of words that people use to draw parallels with physical disease, parallels that don’t always exist as much as the words make it sound like they do.

So even though I use that word a lot, I don't like it, for that reason. It feels like a dangerously bad analogy that’s been repeated so often that people take it as fact.

Does that make sense?