Tag Archives: words

Words matter to me

I want to talk a little about why I like labels so much. I mean, I’ve talked a lot about labels and their usefulness and whatnot, and I have my arguments for why labels are more helpful than harmful, but that’s not quite what I want to talk about today. This time, I want to be more personal. I want to talk about why I like them *for me.*

When I explore things like “am I aromantic?” I get people telling me that the words aren’t important and I should just live my life. I find that incredibly frustrating, because it is completely invalidating to how I process and deal with things. It actually seems a bit ironic because I usually get that kind of feedback from people who think in words, while I, the person who largely thinks in concepts and sensations, wants the words for labels and identities.

I’m not sure why it’s working that way. I would have thought that word-thinkers would be all about their words, since they use them to think, and my less-wordy self would be less interested in words. But it just doesn’t seem to work that way. I may not do my primary thinking in words, but I still LOVE WORDS SO MUCH. Maybe the fact that I often need to actively translate my thoughts into words to be able to communicate them to other people leads to me appreciating words to a rather extreme degree.

What I really want to say, though, is that having words for things helps me understand them. Being able to grab onto a word let’s me put down a signpost, so I can anchor my rather abstract thoughts into something concrete. I’m not always very good at bringing things together into coherent wholes, and words help me do that.

Ok, here’s an obvious example – “Aspergers.” Before I had that word, I was still myself. I was being who I was for my whole life – who else would I be? But there was a lot about myself that I did not understand, and my behaviors and challenges and difficulties I had often felt random and spread out and incoherent. Gaining a word let me take what was very chaotic for me and find an order and coherence to understanding what was going on. That was REALLY helpful.

This is what words and labels do for me. They don’t confine me, they help me understand what otherwise is often confusing.

To draw another analogy – I once heard that autistic people often do not see wholes very well or easily. We see pieces – all the pieces – and it can take a lot of work to bring those pieces into a whole that we can make sense out of. This is true for me, at least a little bit. How about some more examples? One obvious one, that I’ve written about before, is faces. I see faces in pieces rather than wholes. I am actually not capable of seeing a face as a whole, which can be problematic at times. As another example – ok, story time. I was visiting a friend’s house and she was showing me around. She brought me into one room without announcing what it was first. For a good 30 seconds, I looked around only seeing details – “dresser, dresser, shelf, door, bed, another door” until suddenly it clicked – “BEDROOM!” I had the word for the room, and suddenly all those details and bits and pieces came together into a coherent whole.

So for me, words matter. It’s the opposite of helpful when people try to tell me to not worry about the words, because if I am pursuing finding the right words for something, you can believe that there is a reason for it. Usually that I need to find a way to bring coherence to a number of disparate things that are difficult for me to manage until viewed as a whole.

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Them

I want to talk about words again. Specifically, one type of word – “they” or “them.”

I’m just going to come right out and say it -“they” is a risky word.

Just to be clear, it is not a bad word, by any means. The word ‘they” has lots and lots of uses, starting with a simple way to refer to a group of people and continuing on from there. It is excellent as a singular, gender-neutral pronoun, especially in a language that has yet to come up with anything better, or at least anything that has really caught on. ‘They’ or ‘them’ can be really useful words in many different contexts, and I am not trying to claim otherwise.

However, “they” can also be a divisive word. When you pair the word “them” with “us” it takes on a new meaning. ‘They” starts to mean “not us.”

This is when it gets risky.

It is very easy to use the word “them” when talking about a group of people of which you are not a part. I might say “them” when I’m talking about cisgendered men or allistic people as these are groups which are definitely not me. However, what if there was a good chance that I was also talking TO cisgendered men or allistic people?

From my perspective, it always feels a bit weird when someone is talking to me, and then refers to a group of which I am a part as “them.” Recently I had a short back-and-forth with someone on a forum who, while talking to me, repeatedly referred to females as “them” and “they.” It was odd. I think he perhaps did not realize that he was talking to a female-bodied person.

Now, that particular instance was not particularly offensive. It was just strange. However, it can get offensive, or at least bothersome, quite quickly and easily. Especially when it’s paired with an “us.” I think it is very important, when writing, to stay aware of word usage. To notice who we are referring to as “them,” to pay attention to the manner in which we are doing to, to notice if we are separating “them” from “us.” And then to think about if that’s something we actually want to do.

I mean, sometimes it is a thing we want to do. Sometimes I am explicitly addressing a very specific group of people. Or maybe there is a group of people who I really do not want to be addressing. Maybe I want to create distance between an “us” group and a “them” group.

But then, maybe I don’t. In which case, I need to be careful. When I wrote my post Autism and Race, it was something I put a lot of effort into. The “us” I wanted to create was everyone on the autism spectrum, regardless of race. However, because I am white it would have been very easy to start saying “them” when referring to autistic people of color. Doing so, however, would have created a divide that I really did not want. The same thing can happen when I am talking about disability. I want “us” to be everyone with a disability, regardless of visibility or severity. Sometimes, though, I am specifically talking about people with disabilities that I do not share, such as people with physical disabilities or people who are non verbal. If you are a part of one of those groups, I still want you to be part of “us.”

Which brings me to another important point – I generally assume that my readership is diverse (at least partly because I want my readership to be diverse). Do I want someone reading my blog to suddenly find themselves (gender neutral singular) as part of a “them?” Well… maybe sometimes. But mostly no, no I do not. So whenever I write, I try to keep this in mind. I think everyone who write should keep it in mind.

When talking *about* a group of people, referring to that group as “them” means that you are not talking *to* them. Is that really something you want?

It’s something to think about, at least.

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Finding the Boundaries

creative commons image by ank0ku on flickr

Explicit boundary markers are fabulous.

This is yet another hugemassive topic that goes far beyond anything I’m capable of fitting into a single blog post. So, yet again, I’m going to be going for a more general overview, with the idea that I can do more specific blog posts in the future.

In my post about politeness, I briefly listed a few areas of polite behavior, including finding and respecting people’s boundaries. As a matter of fact, most of what I listed could be considered a form of knowing/respecting boundaries, as this is a really huge deal. In some cases, it could be considered about being polite or otherwise, and in other cases it’s about a whole lot more. There are all sorts of types of boundaries.

When I first started thinking about this blog topic, I was thinking about a version of boundaries that fits rather neatly as a politeness thing – that is, knowing when to talk to people and when not to. Knowing how often to talk to or contact people. How much is too much, how much is not enough, that sort of thing. I am terrible at finding a balance on this one, and after many failures in relationships I’ve become somewhat obsessive and stressed about it all. Too little contact with a person and I find myself unable to continue to feel a connection with them. Too much contact with a person and they tend to run away. Trying to balance what I need and want with what the other person needs and wants is something I find terribly complicated and difficult, and I only occasionally bother to try. On this one, if anyone has any magical secrets on how to figure this out, I’d certainly love it hear them. ^_^

There are also other sorts of boundaries. Many of them are very serious sorts of boundaries, with serious consequences for getting them wrong. One of those areas is sexual boundaries. Interestingly, I don’t find sexual boundaries to be all that difficult to navigate. The big thing is that for it to work as easy as possible, there are two things each person needs to bring to the table.

1. a willingness to talk about where your boundaries are. It can be hard to directly talk about sexual things, especially since we have a lot of learned shame around it all, but it’s honestly fairly important to be able to do so. That said, it’s ok if it’s uncomfortable or challenging or embarrassing. It’s just important to do it.
2. Practice explicit consent. I am a huge proponent of explicit consent just in general for everyone (unless you have an established relationship and have worked out other ways to do it), but ESPECIALLY LOTS for anyone on the spectrum. Where it goes beyond “no means no” and into “yes means yes.” Do not assume that things are ok – ask first. It does not have to be terribly awkward and robotic, either. Enthusiastic consent is pretty hot. ^_^

Then there are more general boundaries. Some are fairly obvious (don’t punch people except in certain, very limited, contexts), and others are more about any given individual’s lines (like how I don’t want people to touch my upper arms). In the case of the latter, I strongly prefer (and very much appreciate) people who are willing to be explicit. I have a very hard time with non-verbal communication, and I miss boundaries all too often when they are expressed with gestures or facial expressions rather than with words. This is a difficult area for me – technically speaking, socially speaking, it’s up to me to detect where everyone’s boundaries are. Realistically speaking, while I do try very hard, sometimes I just can’t. I need words. So I tend to be more drawn to people who use words, or who are at least willing to use words with me. Which also means that when I person does use words to express a boundary, I make a point to respect it without making them work or fight for it.

Sometimes I find when I express boundaries to other people, their response is to immediately ask me why I need that boundary, or couldn’t I use this other boundary instead, etc. This both bothers me on a personal level and is a behavior that I find generally problematic, so I make a point to not do it (with the possible exception of if respecting that person’s boundary carries a risk of crossing a boundary of mine. then negotiation needs to happen). If, for whatever reason, I want more information I make a point to agree to the boundary first, and then express my desire for said information.

Overall, I find boundaries are things worth a lot of my energy and attention. I know I sometimes have trouble, but I really do care about getting it right, so I try. I try a lot. And I love it when people are explicit about their own boundaries. It’s fantastic.

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Expressing Affection

creative commons picture by Tambako on flickr

d’awww

In this case, I actually want to talk about affection in the context of friendship-feelings, rather than romantic-feelings. There is already good and healthy talk out there about romantic feelings, and how different people express their love and affection in different ways, and how understanding that can lead to better relationships. This is good and lovely, but I have not personally seen very much of this concept being applied to friendship type feelings.

Friendships seem to come in all sorts of degrees of closeness. I’ll be honest, I find navigating it all to be difficult and complicated, and I rarely find it worth it for anything short of very close, intimate friendships (though lately I have been experimenting with more casual friendships. it’s… interesting). Anyway, I am wanting to talk about expressing platonic affection. There are ways that I have to express affection or say “I like you” in friendship ways. Things like looking direction at a person’s face for several seconds straight, or giving them a big grin, or deliberately reaching out and touching them. In my language, these are all significant things because I do not do them easily or casually. They are how I express friendship affection.

Unfortunately, I have learned that not everyone sees them this way. I have had these things shrugged off and disregarded, sometimes in ways that I find hurtful. And not necessarily by people who want to hurt me, but by people who actually like me and reciprocate some level of friendship-feelings, but who apparently simply don’t understand what I’m saying when I do those things.

So I figure there are two steps to dealing with this. One is to try to teach them my language, so they know what various actions are saying (this blog post is actually a minor attempt at that). Another is to try to learn their language and use it too.

I like words. Words are fabulous. So it seems reasonable to, at least occasionally, say to a person “I like you.” When I think about it, it’s kind of amazing to me just how challenging it is for me to say that. I can say “I like doing this thing with you” relatively easily, but that is very different. So a personal project that I have been working on is to, here and there, say “I like you” to a person I have friendship-feelings towards. Of course, there is still a high degree of probability that they won’t really grok how challenging it is for me to say. I mean, given how much I like words it seems rather counter-intuitive that I would find saying certain things so difficult. However, it will mean that I will be saying it in a more direct, common-language way, so there will be less chance of my meaning being lost in translation.

In at least one experiment of this, I learned that words can be really quite significant. I have been riding for around four years. In that time, I have grown to have friendship-type feelings at my riding instructor. In all the time I’ve been riding, in FOUR YEARS of chatting, sharing personal stories, and getting to know each other, I had never once actually said “I like you.” NOT ONCE. So eventually I gathered my courage and did just that. I told her that I wanted to consider her a friend, I said that I really like having the chance to just chat and such once a week, and I said “I like you.” She actually surprised me with the strength of her positive response. So in at least one case, actually using the words really turned out to be a good thing to do.

So now I’m experimenting in little ways, here and there, with other people. I guess we’ll see how it goes.

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Exformation

 

Anybody who knows me knows that I like words. Words are these amazing things. Strings of sound that we’ve managed to imbue with meaning. It’s incredible! Written words are also awesome. Those are little squiggly lines that we associate with sounds that we string together in (hopefully) similar ways to the spoken words to represent those meanings. And they aren’t the same, either. I write-think better than I talk-think, and despite accusations that it’s just because I can go back and edit, my brain really does flow differently and more smoothly when I’m writing.

In any case, words. Words are awesome. So recently, thanks to a friend posting a video on facebook, I discovered this guy called Ze Frank who makes youtube videos. I have gotten all into them, as they are most cool. One of them wound up being about this concept to which a word has been attached – exformation.

I got very excited about this, largely because I really like encountering new words and how they can make it easier to explore a concept that maybe you haven’t thought much about before. Or at least, they do that for me. Words are so awesome.

Exformation does not appear to have made it to the dictionary yet, as it’s a very new word. Just a baby word, really. So basically (if you haven’t watched the video, which is cool if you don’t want to), exformation is information that a person deliberately leaves out of communication. Everyone does this. Any time you’re explaining something and end with “but I’m sure you get what I’m saying” there’s probably more you could say that you aren’t saying, assuming that the listener will be able to unpack what you mean via everything else you said, or cultural assumptions, or shared experience, or any number of other things we can reference to pull meaning out of interactions. It’s assuming that the listener can and will be able to do that.

So then I, of course, though about this concept in terms of autism. People on the autism spectrum seem to often be accused of two particular things (ok, lots of things, but there are two I’m wanting to talk about).
1. That we talk and talk and talk entirely excessively, giving way too much information
2. That we jump topics in odd and unpredictable ways, or can be confusing when we talk because we assume the listener knows something that they don’t.
I think both of these can be connected to exformation. The easiest way would be to say an error in exformation, but I don’t like that kind of answer. I mean, I’m not always able to unpack what I’m supposed to know when I’m listening to someone else, but we wouldn’t say that they made an exformation error, would we? Actually, a lot of people would say that’s my fault too since I’m on the autism spectrum, but that’s a rant for another time.

The point is, knowing what not to say is just as much of a thing as knowing what to say. It’s based on knowing and understanding what other people know and understand, and having a pretty good idea about what they’ll be able to infer or figure out or calculate or whatever else. Which is actually kind of complicated, if you think about it.

Not too long ago I read a book called Death and the Penguin by Andrey Kurkov. It happens to be a Ukrainian book that was translated into English, and it’s for a Ukrainian audience. Now, as far as I know it was meant to be surreal and odd, but seriously, it was very very strange. I found myself wondering at what cultural assumptions I am supposed to have, or what shared experiences that, being American, I just don’t share that is supposed to inform the reading of that book. I don’t suppose I’ll ever figure that out short of going to the Ukraine or talking to someone who’s been there who’s also read the book who also understands how my cultural background informs how I look at the world.

So jumping back to autism, I’m wondering if sometimes these glitches (I think that’s a significantly better word than “errors’ for this) in exformation are because my experience of the world, as a person on the spectrum, is significantly different from most other people’s experiences of the world. My experiences and culture and whatnot all inform what I believe needs to be said or left unsaid, but sometimes that isn’t shared even with other people from the same general culture. So there’s a glitch. Or, in the inverse, maybe I don’t realize that I’m saying things that other people would be able to easily unpack, so from their perspective I’m going on and on about things that don’t need to be said. There’s a glitch. A mis-match.

I don’t think mis-matches are errors or mistakes or a sign that someone is wrong. When Andrey Kurkov wrote Death and the Penguin, he was not wrong to write it for an audience that shared his cultural background and general life experiences and assumptions. When I read it, I was not wrong to not be able to unpack whatever I was maybe supposed to. We’re just different and that’s ok, and it means that if I’m going to fully understand I’ll have to put in some extra effort. That’s ok.

So it’s ok to mis-match more close to home. I just think we need to be willing to understand when there’s a glitch and instead of deciding who’s at fault, working together to meet in the middle and figure out what assumptions we were supposed to have.

I like unpacking and inspecting assumptions anyway, so it all sounds most worthwhile to me.

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Functioning

This is a particular label point that I am still working out. I know there are many people out there who dislike the high/low functioning labels, but I’m not sure if I agree with them or not. I do, however, seem to be gradually leaning in that direction.

At first my opinion of the labels was much like my opinion of most labels – very useful but sometimes used badly or the wrong way, but that’s hardly the label’s fault. Buuuut then I started thinking about it more.

First of all, I wondered where else “high functioning” is applied. The primary other area I saw it being applied was alcoholism, where “high functioning alcoholic” is apparently a way of distinguishing alcoholics who are holding down a job from, basically, winos. Even in that context I saw people occasionally mentioning problems with the label, and how it might make it sound like a high functioning alcoholic doesn’t have problems or isn’t destructive when, in fact, alcoholism hurts everyone, regardless of how well-functioning any given alcoholic happens to be. As labels go, it’s not so great.

So then I got to thinking about what use the labels might actually have. I mean, that does seem to be the central point. Can I find an actual, reliable use for high/low functioning? Even more so, can I find a use that outweighs any potential problems with how the label is used?

I never got past the first question. Part of the problem is that people on the autism spectrum tend to have a rather significant amount of variance in what are usually considered “normal” skills. As such, it is not uncommon for a person to be considered “high functioning” in one place and “low functioning” in another. It simply depends on what the viewer is looking for, which causes the labels to be of questionable meaning. As Emily Willingham puts it, “A good science geek knows that function is often a matter of environment, not a constant measure.”

So what do people mean when they say that someone is high functioning? As it turns out, there is a tumblr asking that very question! How useful. Here are a few of the answers people have given:

I met someone for coffee and he said “You’re the highest-functioning out of all the high-functioning autistics I’ve met.”
All he had seen me do at that point was buy coffee.
http://whatishighfunctioning.tumblr.com/post/13803531667/can-buy-coffee

If you are considered a physically attractive and verbal adult woman, then you automatically having passing privilege (and will be seen as a liar when you say you cannot do things), and you automatically will be considered high-functioning.
http://whatishighfunctioning.tumblr.com/post/12337002312/appeal

I once had my own experience with someone saying to me, “you must be very high functioning.” I was telling them about my recent diagnosis, and they were rather surprised by it. As far as I could tell, what they meant was “oh, I wouldn’t have guessed.” I know they meant it as a compliment, but I found myself very uncomfortable with the comment anyway. The assumption seemed to be that being on the autism spectrum is automatically a bad thing, so it’s nice to temper it with “high functioning.” Though that’s just a guess on my part.

As far as I can tell, both from my own (admittedly limited) experiences and from what I’ve seen other people say on the subject, “high functioning” is mostly about passing. It’s about looking normal. I can pass for normal. All I have to do is only interact with strangers in limited and/or carefully controlled circumstances, never go to parties, and not go out in public if I’m too tired or stressed to make eye contact. In fact, to the average random stranger, I do pass for normal – maybe as a little odd, but most of them wouldn’t guess that I’m an aspie. Of course, I’m aided by the fact that most people, through no fault of their own, have a limited and stereotyped idea of what autistic people “look like.” So because people are not immediately aware of the fact that I am on the autism spectrum, because it does not jump out in anyone’s face right away, that means I am high-functioning. Unfortunately, people also wind up with a number of ideas of what “high-functioning” is supposed to mean. So when they look at me and see “high-functioning” they then assume that I can do all of the other things that they associate with the term – things I cannot necessarily actually do.

Once people get to know me, though, my differences tend to stand out more and more. I can’t always maintain my social face. Sometimes I stim A LOT. Sometimes I get confused by things most people consider obvious. Sometimes I can’t stand to be touched. People who know what Aspergers is like can, and have, guessed that I am on the spectrum. Several times people have been surprised when I failed to live up to what they think “high functioning” is supposed to mean. As such, I am not entirely convinced about this passing thing.

In any case, I went along mostly waffling about my opinion until I stumbled across an article comparing “mild” autistics to “severe” autistics. It really only qualified, at best, as a preliminary study, but the results were interesting. That being, that those who might be considered “high functioning” actually struggled just as much as those who might be considered “low functioning” as adults, in terms of work and relationships. Which, of course, highlights one of the several problems with labelling someone as high functioning – the assumption that since they are so high functioning and all that, they don’t need much in the way of help or resources. That is a dangerous way to think, that clearly needs to be called into question.

There is also the inverse problem. When people see someone and view them as “low functioning” they often assume that the person must not be intelligent or have skills or have anything to contribute or say. Amy Sequenzia definitely has something to say about that harmful assumption.

So overall the label does, unquestioningly, have severe problems. Problems that seem to go beyond simple mis-use, and well into the realm of inherent, unavoidable issues.

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labels

I’ve decided to just go ahead and be opinionated today.

I like labels.  I like them a lot.  Now, I’m probably biased since I really like words in general – words are such amazing fantastic things, with meanings and layers of meaning and nuance and connotations and all sorts of things.  Words are cool.  There are all sorts of types of words, and most of those types are fabulous, including labels.

I have found that there are many people out there who dislike labels.  The usual reasons given are that labels pigeonhole people, or put people in boxes, or define people and therefor limit them.  Personally, I very strongly disagree with all of that.  Ok, I agree that those are bad things to do, but I disagree that labels do that.  People do that and use labels as an excuse, but in my experience people don’t really need labels to do it.  There are all sorts of excuses; labels are just one of many.

Personally, I find labels incredibly useful.  Using a label to define a person is a stupid way to use it.  Using a label to describe a person, on the other hand, is very useful indeed.  It’s helpful to me personally to have labels for myself – like, for instance, Asperger’s.  My life has gotten so incredibly much better since I got that label!  It has helped me to understand myself better – to give myself a context that helps to explain my oddities.  It doesn’t define me or pigeonhole me or limit me.  Instead, it describes me.

Interestingly, as much as some people claim to be against labels, they only seem to be against some labels.  For instance, I have yet to have anyone complain to me about labels when I describe myself as a crafter.  Or as a cat person.  Or as a woman.  Or as a rider.  Or as any number of words I use to describe myself.  I have never managed to figure out what it is that is suppose to make some labels bad, and other labels not bad.  So instead I just don’t worry about it – labels are good.  Sometimes people use them in bad ways.  That is not the fault of the label, it is the fault of the person who used it.

In other news, TACA has yet to get back to me, nor have they corrected their erroneous “fact.”  Given that it’s been almost a week, I do not consider this a good sign.

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What is empathy?

I see discussions about empathy or lack thereof rather often on autism forums.  There is a lot of debate around the issue, which I definitely want to opine about at some point.  Before I can do that, though, I have to opine about the fact that empathy is, in fact, an extremely poorly defined word.  This makes discussions about empathy very messy, because very often what Person A means is not what Person B hears, because they are thinking of the words in different ways.

So what does empathy mean, anyway?  I have heard it used to mean an ability to care about other people.  Some people say that it means the ability to feel what other people are feeling.  Yet other people say it means the ability to determine what other people are feeling.  An article I just now read here said empathy is “acknowledging the patient’s emotional state” and contrasted it to sympathy, which was “feeling the emotion that the patient feels.”  The dictionary says “the intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another” which is astoundingly broad.

Let’s say a person says “ASD people do not have empathy.”  One person might hear “ASD people have difficult determining what other people are feeling.”  Another person might hear “ASD people do not feel what other people feel.”  Yet another person might hear “ASD people do not care about others.”  How can we possibly have a rational discussion on empathy if we are not clear about our terms?

There are some people taking steps to be more precise on the matter.  For instance, some people are using words like “cognitive empathy” and “affective empathy” which is definitely a step in the right direction.  Unfortunately, I have already started seeing multiple ways those phrases are being defined, which seems to take us back to step one.

Ultimately, my desire is for people to be more precise in their language.  Of course, I always tend to desire this, but I think with things like ’empathy’ or other incredibly vague words, the need for precision and clarity becomes much more pronounced.

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