Category Archives: opinion

Ramble on Stimming

This post might be a bit unfocused. We’ll see how this goes.

I’ve seen some disagreement in some of the autistic spaces I’m in around the idea of “stimming is communication.” Apparently some of us are really against that idea. It’s rather made me want to weigh in with my take on the matter.

And my take is – stimming is communication, in the same way that other forms of body language are communication. Some of the arguments against stimming being communication is that sometimes (or many times, or often) stimming is done without the intent to communicate. Apparently to some people, that means it’s not communication.

I disagree. Humans communicate all the time without necessarily putting intent behind it. Over on the neurotypical side, people generally agree that body language is communication. And sometimes NTs will put deliberate effort into their body language, so that it communicates something that they choose. However, many times body language just happens, without forethought explicit choices involved. And when that happens, it’s still communication. NTs like to talk about how up to 75% of communication is nonverbal – and they’re meaning that for themselves. Their own communication is dominated by nonverbal cues. Facial expressions, body language, tone, things like that.

I am firmly of the opinion that stimming is (among other things) body language. When an NT laughs, they are probably not thinking “I wish to communicate my amusement, so I am going to make this particular sound to convey it.” Laughing is simply a natural result of amusement. Same with stimming. Whether I’m flapping my hands because I’m excited or rocking because I’m overstimulated, they are natural results of my mental state. They are also expressions of my mental state, and, among the various things they do, they serve to communicate that to others.

When I say that stimming is communication, one of the things I mean is that NTs should learn to pay the same kind of attention to it that they do to other forms of body language. I am saying that all behavior is communication, and stimming counts too. I’m saying that stimming is another form of body language, and that is one of many many reasons why we should stop trying to stamp it out.

When I stim, I am generally not thinking about communication. I’m excited or happy or stressed or overstimulated or maybe just needing to rock. Frequently I’m alone, so communication doesn’t make any sense. However, I still say that stimming is communication, the same way that facial expressions are communication. I say this because intent or not, they can communicate information to others, if there are others around who know how to read it.

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Not a Cure

The cure vs. not cure battle seems to be continuing to rage on. Ages ago I made a post with my take after someone accused me of not needing any kind of help, since I am against being “cured.” It seems that to some people, it’s a binary. Either we’re just fine as we are and don’t need help or treatment, or we need to be cured. The reality is, of course, more nuanced, with different individuals needing different amounts and different types of help and treatment.

So, looking at the cure stuff, it seems that there is a pretty big disconnect between the broader autism community, and how some parents think of it. See, to autistic adults, most of us see autism as an identity. As a neurology. To get rid of the autism is to fundamentally change who we are.

I gather, though, that to some parents of autistic children, they see it differently. See, autism is diagnosed by behavior. While scientists are slowly researching how autistic brains are different from neurotypical brains, it’s still an area that we don’t really understand, and we are very very far away from using that kind of information in diagnosis. Behavior is all we have. So “having autism” is, in a sense, synonymous with “being diagnosable.” Of course, there are problems with that logic, and one of the big ones – the one I am wanting to talk about here – is how some people use it for their idea of “cure.”

Basically, for some parents, “curing” their child only means making them no longer diagnosable. And making them no longer diagnosable means making them get rid of the behavior used for diagnosis. And when I think about that, well, it’s quite distressing.

See, I could probably learn to stop stimming. But it would leave me constantly tense and uncomfortable, it would eliminate a huge part of my body language, and I would have to keep a fairly significant portion of my attention dedicated to preventing stimming. Sure, it would reduce how diagnosable I am, but it would not better my life in any way. Quite the opposite.

If there were enough external pressure, I could probably succumb to not showing my sensory issues. I could choke down food that makes me gag (well… maybe. The gagging can get pretty bad). I could sit in silent agony as clothing tags dug their way into my skin. I could learn to not flinch at painful lights and noises (which, actually I did learn that one a little. It’s not a skill I particularly enjoy, and I am working on getting rid of it).

I could take intensive social skills classes. Which, actually, wouldn’t necessarily be bad. My social skills are way behind other people in my age group, and this is very much an area where I need help. As I’m pretty sure I’ve written about before, my ability to handle parties or similar forms of group socialization is approximately nil. I just can’t do it. So teaching me to handle stuff like that would be good.

On the other hand, not all ways of teaching “social skills” are about bettering an autistic person’s ability to actually interact. Sometimes they are about hiding our weirdness. Things like forcing eye contact regardless of the pain involved. Or forcing us to touch people even if it makes us feel sick or panicked.

So if my childhood had included all that kind of “help,” and somehow I learned to cope with that stuff without more or less constant meltdowns, I might have stopped being diagnosable. But the thing is, I would still be autistic. I simply would have learned how to hide my autism. And it wouldn’t even be able to last long term. As life continues, as the challenges of life increase, it would take more and more effort to maintain the facade. My ability to do anything else would diminish more and more. Eventually, the house of cards would crumble. Inevitably.

Making the autism invisible does not get rid of it. All it does is make it so neurotypicals can happily pretend it isn’t there.

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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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Compassion

i found it this way

<image is of a single blue flower resting on blue gravel. I’m not sure why I’m using this image, but somehow it seemed fitting>

I want to talk a little bit about compassion. I’m not entirely sure that it is within the scope of my blog (though Nee assures me it is), but it’s been on my mind a lot so I’m writing about it anyway.

A few things got the thoughts started. One was when a commenter called me compassionate a few posts ago (thank you, kind commenter! I very much appreciate it!) and another was some stuff on facebook that I am reluctant to elaborate on because it entirely involved other people. Basically, it was people talking about how they feel compassion, and I had thoughts that took a while to make it to words, as they do.

I think that compassion is important. I also think that compassion is work, and is frequently not at all an easy thing to do.

The type of compassion that most people seem to talk about is compassion for people who are hurting in some way. Typically the hurt is obvious and acute, and yeah, we feel for those people. It’s important to feel for people who are hurting. However, this is the easiest kind of compassion there is. I want to talk a little bit about more difficult compassion.

Compassion gets much more difficult, and it not often talked about, when it’s for a person who’s being annoying. Compassion is very difficult to give to a person who hurts us.

One I personally find incredibly tricky is compassion for a person who is hurting in a similar way that I am hurting, but distinctly less than me. For instance, Nee and I both struggle with loneliness. However, he has more people in his life than I do. Sometimes, when I am really feeling the pain of my isolation and he’s just come home from socializing without me, it can be really hard for me to feel compassion for the fact the he is lonely too.

Compassion means always assuming the best in people. It means that if someone does something that you find hurtful, ALWAYS assume that it was unintentional, and work from that baseline.

Compassion means believing that people have good reasons to do or believe whatever it is they do or believe, even if we don’t understand it or disagree with it or find it offensive. Even if they are demonstratively wrong, even if they are hurting people, compassion means trying to find the root of what is going on to address it. Compassion means approaching people with love and a belief that they are *not bad people,* whatever else is going on.

Personally, I find this profoundly difficult when it comes to issues I am passionate about, or I am personally hurt by their actions. Sometimes I just can’t do it. In fact, while I definitely think compassion is important, I also think that compassion means understanding that sometimes people need to take care of themselves first. The person who is personally hurt by racism should not have to stop and try to experience compassion for their oppressors.

Now, as much as I would like to be a compassionate person, sometimes I just can’t. Frequently, I can only manage compassion when I take a step or two back, so I am not so personally impacted by what is going on.

I do think that compassion for those are are hurting comes first, and is far more important than compassion for those who cause hurt. However, that does not mean that the latter is not important at all or should simply be forgotten. I think that changing the world for the better is going to involve lots of compassion, including the kind of compassion that is difficult or painful.

Finally, I want to point you towards an example of the kind of compassion I am talking about, that put it much better than I ever could. It is compassion without concession – it demonstrates that showing compassion does not mean giving up, or conceding defeat, or saying that the other side is correct. It is, simply, showing compassion.

You may have read it already: The Distress of the Privileged. The author uses the movie Pleasantville as an example, to show the distress of one who is privileged – in this case, the character George Parker. He enjoyed a privileged position in his society, and found himself lost and confused when suddenly the people around him started to reject society and his role in it.

“George deserves compassion, but his until-recently-ideal housewife Betty Parker (and the other characters assigned subservient roles) deserves justice. George and Betty’s claims are not equivalent, and if we treat them the same way, we do Betty an injustice.”

Sometimes I think that people fear that showing compassion means losing the opportunity for justice, but I do not believe that is the case. Compassion is still important, and can even be a tool for justice. And no, it isn’t always easy.

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Self-Diagnosed

This is a topic I am still learning about, but I am very slow at it because it is often seen the most in communities, and I am not very good about participating in communities. I don’t actually expose myself to many communities, and those that I do, I tend to lurk in.

However, despite all that, I do see things now and then, and there’s one trend in particular I want to comment on. That being – the apparent friction between those who are officially diagnosed, and those who are self-diagnosed.

Basically, there seems to be a lot of hostility from the officially diagnosed towards those who are self-diagnosed. Many people seem to think that if you are not officially diagnosed, that your contributions towards discussions or your experiences are less worthy to be shared.

The inspiration for this post actually came from this thread (warning – it’s a link to reddit). The OP honestly seemed to believe that officially diagnosed people were the ones who would know what they are talking about or have actually been through experiences, while self-diagnosed people have not.

Honestly, I find all that kind of sad and alarming. There are any number of reasons that I person may be “self-diagnosed” and not officially so, and a lack of official diagnosis does not inherently mean that the individual in question must not know what they are talking about or does not have anything of value to share.

So I have seen roughly three types of self-diagnosed people. These are rough generalities and I’m sure there are people I’m missing, but I can only speak to what I’ve seen and how I’ve categorized it all in the way that makes sense to me.

1. Those who have spent months or years researching Asperger’s/autism, looking at their own life, and seeing if it makes sense. There could be any number of reasons they do not have an official diagnosis – maybe they lack the money or support, maybe they cannot find a place that will diagnose adults, maybe they are scared, maybe they are old enough that they don’t see a point to an official diagnosis, and who knows what else. While the diagnosis may not be official, it still has a great deal of thought, effort, and research behind it.

2. Those who know that something is going on making them different, but aren’t sure what. They’ve stopped over in autism land and perhaps believe for a while that it is the best explanation for whatever is going on. From what I’ve seen in this group, they tend to continue to do research and trying to figure themselves out, and either migrate into group 1 or decide that autism is not the most likely explanation and look elsewhere.

3. Those who are socially awkward or rude or sometimes just jerks, who claim asperger’s as a convenient excuse for their behavior. It’s the “I can’t help it, I have aspergers!” line I’ve seen all too often when someone is called out for being an asshole.

The main problem is, obviously, group 3. Before my official diagnosis, I could have probably have been said to be in group 2 for a while, and eventually group 1. Or well, I could have if I had ever self-diagnosed. However, group 3 kept me away from that. Seeing the fad of Asperger’s come and go left me with a lot of anxiety around that label for quite a few years. I didn’t want to be in group 3, I was often repulsed by what I saw, so I just stayed away from everything for a long time.

Thing is, if I had spoken up for help and people had simply assumed I was in group 3 and treated me accordingly, it would have done a lot of damage. When we discount ALL who are self-diagnosed because of the actions of a few, we are throwing the metaphorical baby out with the bathwater. When we decide that being self-diagnosed means you don’t know what you’re talking about or you haven’t had similar experiences, we do a disservice both to them and to ourselves. We reject people who may need help or have need of community, and we deny ourselves the opportunity to hear more perspectives.

We reject the person in their 60’s who’s lived a life of difference and difficulty, who finally figured out why they are so different and why things are so difficult, but cannot get an official diagnosis due to age or income or whatever else.

We reject the teen who is struggling with unsupportive parents and an uncaring school system, desperately trying to learn how to manage autism without any supports in place.

And just to be clear, anyone who is diagnosed as an adult (and there are many of us) has a good chance of spending time in group 2 (or a similar place, regardless of whether or not we explicitly call ourselves “self-diagnosed”) for a while. We’re figuring this out largely on our own, and it can be tough when access to services almost exclusively focuses on children.

Yeah, I’ll agree that something needs to be done about that group 3, giving us all a bad name by offering up autism and “I can’t help it!” when they’re just plain being rude, but I seriously do not believe the solution is to reject all who self-diagnose.

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I’m not going to fight my own mind

Let’s talk a little about metaphors. Metaphors are pretty cool, and they are pervasive in our society. In fact, neurotypicals have a tendency to not even think about them or sometimes even be aware that they are speaking in metaphors. We are so surrounded and immersed in metaphor it’s like the air – something barely even thought about.

Unless something in the air doesn’t quite fit, or you can’t seem to breathe right. Suddenly the air is very much on your mind (talking about metaphors using a metaphor. yep). When you’re autistic, metaphors don’t flow as smoothly as they do for other people. I know that I tend to be more aware of them than many people around me.

Now, I am here to talk about one particular metaphor. One that is rarely questioned (though it is sometimes, and the questioning is growing) but I think causes many problems. That being – the “battle” or “enemy” metaphor for illness. A friend shared this really great article going over many of the problems with the utterly pervasive battle/fighter/war/enemy metaphor that is used in medicine. Thing is, a metaphor is not simply a word thing, about helping us convey a concept. The metaphors we choose to use actually play a really deep role in how we conceptualize ourselves and the world around us. If you want to read more about that, read the book Metaphors We Live By, by George Lakoff and Mark Johnson.

With illness or disease, we push people to view the illness as an enemy to fight. We say the person who is sick is a fighter, and encourage them to view themselves this way. Medicine, doctors, tests, etc all become weapons in this fight. I think we hope that this metaphor will help people in dealing with their disease, but there is growing evidence that this is actually not helping. From the previously linked article:

“1970, Polish physician Zbigniew Lipowski introduced a framework for characterizing the meaning that patients ascribe to their illnesses. These categories include viewing illness as a challenge, value, enemy, or loss, among others. Since then, studies that have interviewed cancer patients around the time of diagnosis and followed them for years after have found that patients who view their disease as an “enemy” tend to have higher levels of depression and anxiety, and poorer quality of life than those who ascribe a more positive meaning. They also tend to report higher pain scores and lower coping scores.

Which basically means – this metaphor is not working.

However, I also want to look at it a bit in terms of the things I deal with – autism, depression, and anxiety. These are all things to do with my mind. Literally – my brain. They are all happening right here in my head. Now, with autism it is obvious. While some people out there still want to “fight” autism, I find it utterly bizarre. You cannot separate autism and me, so there can be no fighting autism without fighting myself. When you tell a child that autism is an enemy, you are telling them that their own brain is their enemy.

For me, this even extends to depression and anxiety. They’re in my brain. I don’t want to fight my brain. They’re part of the chemicals my body makes. I don’t want to fight my body. If I really, REALLY look at them, in the end if they are my enemy then so is my body. I am not interested in making my body my enemy.

On top of that, for me they are chronic conditions. In the war metaphor the best I can hope for is a stalemate. I will never truly win. What a terrible way to view my life. I don’t want to see myself as fighting a war I can never win.

So I’m not going to.

Not that it will be easy. It is SO easy to view my body as my enemy, my problems as my opponents to defeat. My culture is absolutely saturated in this metaphor and there is no getting away from it. This can only work as a conscious and deliberate choice on my part to reject my culture’s dominant metaphor and replace it with my own. It is a choice to accept myself, with all that it entails. It will be hard. It will take work. I believe it will be worth it.

Therefore, depression and anxiety are challenges. They are part of my mountain to climb. They are problems that I can find a solution for.

Ok, I actually want to look at that last one a little more closely. The book Metaphors We Live By that I mentioned before had something really interesting to say about the phrase “solution to my problems.” It involved a non-native english speaker hearing the phrase, and seeing an elegant metaphor in it. One that we don’t actually use, but I think is much better than the way we currently use the phrase.

What if by “solution” we meant it in the chemistry sense:

  1. the process by which a gas, liquid, or solid is dispersed homogeneously in a gas, liquid, or solid without chemical change.
  2. such a substance, as dissolved sugar or salt in solution.

So, for example, salt water is a solution. In this metaphor, the “solution” to our problems is the substance in which we can dissolve as many of our problems as possible, while precipitating out as few as possible. I want to dissolve my depression, my anxiety, my sensory problems, etc. Some of this is accomplished with medication, some with certain boundaries on what I do and how I do them, some with care of what I eat, and so on and so forth.

With the metaphor, it is presumed that these problems don’t actually go away. They are simply currently dissolved. It means that if something changes (and anything can cause a change), they might precipitate out of the solution, requiring us to tweak it. It does not mean we’ve done something wrong, it does not mean we lost, it does not mean we have to fight another battle. It’s just something that happens and that’s ok. We simply continue the process of finding the best solution at the time – and the best solution will definitely change over time. That’s life. It’s no big deal.

I like this metaphor much better. I may have enemies to fight, but they will not be my own body.

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I will never really trust the psychiatric community

So I have mixed feelings on the psychiatric community in general. Therapists, psychiatrists, psychologists, counselors, the lot. I mean, they can do a lot of good. I have managed to have good experiences in therapy, and I the meds I am taking are helping me a lot. I strongly believe that mental health does count as health, and that psychiatric problems count as medical problems.

But I do think there are some problems. And I don’t just mean “need a find a therapist who’s the right fit” kind of problem. For instance, there’s the racism problem that I talked about before. Not necessarily overt racism (though I’m sure there’s at least some of that too), but more the subtle, insidious sort of racism that people who try to be decent can still fall prey to. The kind of racism that leaves us with inexplicable differences in autism across races, later ages for non-white children to get diagnosed, and very few people talking about it or even acknowledging the problem.

However, that is not the problem I am here to talk about. I am here to talk about the suicidal problem.

I think I’ll just say it outright – I will never, ever, tell a therapist or psychologist or any sort of psychiatric person if I’m suicidal. NEVER. I think the way they handle it is atrocious, and ultimately causes more harm than good. If nothing else, their methods cause ME more harm than good, and their ham-handed approach does not tend to allow for any sort of nuance or personalization of treatment.

I’ve been an inpatient in a psychiatric hospital (or “mental ward’ as my dad likes to put it) on three occasions. I’ve seen callous, uncaring nurses, overworked doctors and nurses alike, reduction in the patient’s humanity, even in the “better” places. I’ve heard that they do help some people and that’s great, but they have never, ever helped me. If I should ever need help because I am suicidal, a hospital is NOT the right answer. It isn’t even close to the right answer.

Yet it’s the only answer that the psychiatric community at large seems willing to give. There’s just nothing else. I once was watching a discussion about this online and saw a therapist defend this position. The line of logic was roughly “if they are admitting to being suicidal than they obviously want help, so we hospitalize them.” This blatant display of “hospital = the only answer” really disturbed me.

Now, I’ve already talked about what I think are healthy ways to talk to a suicidal person. If absolutely nothing else, they would help me and I doubt I’m alone. Ultimately, though, hospitals “help” by reducing privacy, reducing choice, reducing independence, and a high degree of intrusiveness. It’s true, it’s likely to keep patients alive. But for me, that’s about all it’ll do. Instead of addressing underlying issues, the treatment that is supposed to keep me “safe” would only exacerbate the problem. My depressions are often triggered by feelings of helplessness and dependency and lack of choice. Taking all those things and shoving them in my face is harsh and cruel and will only serve to make my feelings worse. Yet do therapists think about that, about who I am and how I would respond and what I might need, if they were to hear that I am struggling with suicidal urges?

Nope.

Until that changes, I simply will not share any suicidal thoughts I may have. It isn’t actually difficult for me – I almost never share when I’m feeling that way anyway. Not even with those I am very close to, so keeping it from a group I consider to be high-risk is not in the least bit difficult. Also, it really doesn’t say anything good that I categorize people who are supposed to be there to help as “high risk.” In fact, it would take an extreme degree of trust and confidence for me to share thoughts and feelings like those, no matter how much I might want to ask for help. That’s just the way it’s going to be.

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Such mixed feelings…

“My darling girl, when are you going to realize that being normal is not necessarily a virtue? It rather denotes a lack of courage.” – Aunt Frances, “Practical Magic”

I should probably confess that I’ve never actually seen Practical Magic, nor do I know anything about it. I have no context for that quotation. All I know is that someone posted it to facebook a while back, and I got all sorts of twisty-turny mixed-up feelings in response.

So apparently I still have mixed feelings when it comes to the concept of “normal”. In the past it was all about being torn over wanting to be normal vs. taking pride in being me. I’m no longer so attached to changing who I am in order to be like everyone else, but still… something about that quote bothered me.

I wasn’t sure why at first. I mean, at this point in my life I take pride in not being normal. I’m not like other people and yeah, that’s a mixed bag, but I like who I am and I’ve forged myself an identity around the fact that I’m different. As far as I could tell that quote is agreeing with the whole idea of taking pride in not being normal… right?

Then a couple words stood out. “Virtue” and “courage.” And then I realized – it was treating “being normal” or not as a choice. As something we could do or not do, depending on what we wanted. And that does not, in the least bit, reflect my reality. From my perspective, way over here, if you get to choose to be normal or not, if it takes courage for you to not be normal, then you’re normal. And that’s ok, it’s not like there’s anything wrong with that.

I’m not normal. I’ve never been normal. There’s nothing courageous about this fact; virtue or lack thereof simply does not apply. Maybe there is some courage in embracing who I am, but not in simply being who I am. Every day I wake up, and I’m not normal. I go about my day, being not normal. I go to bed as a person who isn’t normal. It takes no thought or effort or courage, because this is simply who I am.

And quite frankly, being described as “courageous” simply for existing smacks a little too much as inspiration porn. I would love to be inspiring if I, at some point, do something amazing, but I don’t want my basic existence to be so. I don’t want to be objectified like that.

Maybe I just have a weird perspective. It isn’t about choice for me, so I see “normalcy” as an intrinsic thing, since the autism stuff is intrinsic. When you make it into a choice, you take me out of the equation entirely – my reality no longer has bearing on your worldview. I don’t want to be made irrelevant.

Maybe I should just try to find some nice quotations about the courage to embrace who you are. That might be nifty.

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My Biases

Recent events have gotten me thinking about some of my biases. I do have them. Some of them are really quite strong. I am not here to apologize for them – quite the opposite, I like the biases I am about to talk about. My writing tends to be heavily influenced by them. However, it is clear that there are people out there who think these types of predispositions are absolutely horrible, so I figured I would just make what I believe utterly clear. This is my perspective.

1. I am heavily (though not completely) into the social model of disability. I do not say this to simply disregard the medical model, but to say that the medical model is, by itself, woefully incomplete. The social model is absolutely vital.

Basically, this means that I think that the problem is not so much the physical or mental differences (which is not to say we don’t have challenges. we do. See my contradictions post), but the way society treats those of us who have physical or mental differences.

I do not say that it is we who are broken and have to be fixed or cured. I say the world needs to learn to accept us, embrace us, and accommodate our needs. This is a very huge deal, especially as it seems that some people who strongly prefer the medical model of disability can be quite vitriolic about it.

Further reading:
http://en.wikipedia.org/wiki/Social_model_of_disability
http://www.scope.org.uk/about-us/our-brand/social-model-of-disability

2. Disabled adults need to lead the conversation about disability – not the parents of disabled children. This… this is a contentious point. Just to be clear, I am not saying that there is no room for parents at the table. Quite the contrary, parent’s voices are important too. However, non-disabled parents need to take a few steps back to make sure the voices of disabled adults are heard first, and need to be willing to listen to and take seriously the messages coming from disabled adults.

If parents of disabled children decide that the adults within their particular disability niche should not be listened to, I will be incensed. Would they want their own children to be ignored that way, when their children become adults? Somehow I doubt it.

If said parents disregard the social model of disability and are firmly within the medical model of disability and refuse anything else, my reaction of displeasure will only increase.

3. This one is more recent and less entrenched than the other two, but more and more I’d like to see the various diverse disability movements come together. I would like to see autistic adults do more talking to adults with other disabilities. I would like us to talk about how our issues overlap, and how we all might be able to help each other. Because there IS overlap, and surely we could come together to combat the problems. So often our communities seem so insular. Maybe there’s a way to change that.

This post needs a conclusion or wrap up. To be honest, I can’t particularly think of one. I suspect I have more biases, but these are the big ones. These are my beliefs, and I care about them, and knowing what they are probably helps shed light on where I’m coming from.

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It’s an identity, not a box!

I confess, another post about words and labels.

I still see people talking about “labelling” themselves or their child and feeling hesitant (or outright against the idea) because they don’t know what good would come of a label. There is also a lot of attitude I see around about labels as boxes. As though once you “slap a label” on someone, they are somehow now confined to a box.

Even now I get twitchy every time I see comments like those. It just seems like such a negative and unhelpful framework to me. Heck, it’s downright sad. Am I in a box now because I have a label? I certainly don’t think so.

That said, I am starting to see use in reframing the issue as one of identity, rather than labels. I could say that I have lots of labels, or I could say I have identities.

Things like:
writer
blogger
crafter
crocheter
cat person
horseback rider
female
androgynous
reader
cuddler
American
white
pagan
adult
and yes, aspie/autistic

Not one of those words is a box! None of them confine me. While some of them come with attached stereotypes, I am not bound by those stereotypes, nor do I feel any need to conform to them. Ultimately, I am ME and those are words that I use to describe me. Whether you want to call them identities or labels or just adjectives, ultimately what they are, are ways for you to have some idea of who I am. They are how I see myself, things about myself I consider important, things that impact my life and my worldview and how I interact with myself and with other people.

I wish I understood what it was that made people fear the idea of labels, because then maybe I could address it directly (my SO suggests that it might be because it is how they use labels on others, but that thought is very depressing to me). As it is, I’m left with conjecture and my own experience of having these words has been wonderful and helpful. Maybe I’m odd, but I often feel like I know myself better when I have a word I can use to describe something about myself. The words don’t confine me to boxes, it’s more like they provide some adhesive, enabling me to see random bits of myself as a more unified whole.

Before my “box,” all I knew was that I had a whole bunch of apparently random issues. I didn’t know what was going on or why I had those issues or what I could do about them.
After my “box” all those separate random issues unified into a single thing. A thing I could wrap my mind around and understand. I knew what was going on, I had things I could do to help myself, I could understand myself better. Not just via the word (though even that is significant to me. I love words), but via having a specific thing to learn about.

It’s hard to quantify exactly what “getting a label” did to help me. However, help it did. And it’s not a box, it’s an identity, ok?

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