Telling the story

Today I’ve been thinking about why telling the story of how I acquired my phobia makes me so uncomfortable.

I feel like there are two different ways I can try to tell the story, and both of them have problems. I can tell it in a very short, matter-of-fact way, but re-reading that, or thinking about how it’ll be perceived by other people, is uncomfortable because it feels inaccurate. It doesn’t actually get across why the experience scared me. I feel like I’m not actually answering the question. Also, it’s just really alienating to look at a description of my experiences that doesn’t actually convey how I felt at all. It feels unreal.

On the other hand, if I try to describe how I felt and why I felt that way, (a) I feel like my powers of description aren’t up to the task regardless, and (b) I don’t want to think about it that closely! I don’t want to re-feel those feelings.

It’s hard to talk about it without a certain degree of detachment, but because of that detachment, what I’m talking about isn’t really the thing. It isn’t really the phobia.

So far, I can’t seem to find a middle ground between those two things, being totally detached or overly immersed. I’ve made some progress over time, at least when it comes to telling myself the story inside my own mind, but there’s definitely still a long ways to go.

Today on Tumblr I saw this lovely positive article about a woman with Down syndrome who is entering the Miss Minnesota pageant. She’s also a dancer, it’s generally an awesome and happy article. But part of it made me choke, not because there’s anything negative about it in itself but because of what it reminded me of:

Born six weeks early with Down syndrome and without an esophagus, a condition that required surgery, Holmgren has always been a “go-getter” who has never been defined by her disability, said her mother, Sandi Holmgren.

She was born with the same conditions as “Baby Doe” in this euthanasia case. 

Baby Doe died at six days old, of aspiration pneumonia, because his parents refused to allow his esophagus to be surgically fixed. Their doctor encouraged them to think that Baby Doe would only be a burden, that because of his Down syndrome, he would never accomplish anything even if he grew up physically healthy.

Some 30 years later, here’s a girl born with the same set of disabilities, in college, competing in a pageant and described as a “triple threat” talented dancer, actor and singer.

We often talk about how beneficial it is when parents support and encourage their children’s interests in things like sports, art and music, how parental belief in a child’s talents enables them to excel. It doesn’t usually mean the difference between life and death though.

Social anxiety again

I literally didn’t give a second thought to “”self-diagnosing”” social anxiety (as a teenager, before I spent much time online, before I’d ever heard the term “self-diagnosis.”) It seemed pretty foolproof. I had anxiety about social situations: social anxiety.

But the more I read in-depth stuff by and about people with social anxiety, the more convinced I am that I acutally kind of don’t have it. I don’t have the same kind of anxiety about social situations that most people mean when they say “social anxiety”, anyway.

One of the big differences is, social anxiety is supposed to have “self-monitoring” as a big component– like, wondering how other people are perceiving you, what-iffing about negative ways you might be perceived, doing extra careful things to make sure people perceive you the way you want them to. And with the post about bars, I got to thinking about the fact that I do the self-monitoring thing sometimes (see the points about dancing), but I don’t really do it that much.

And when I do, there’s either an anxiety/shame snowball effect where I very quickly worry myself into total incapability, or it sort of dead-ends because I have no fucking idea how people actually perceive me, what I might be doing “wrong,” or what I might need to do to “fix” it, so I just exist in this state of tense balance/calm given-up-ness where I think I should probably be doing X, but I’m probably failing, but I’m going to keep trying to do X anyway.

I’m not smart enough to what-if during social situations (and I don’t really do it outside them either.) I’m not quick enough. I don’t have enough extra brain capacity. If I really start what-iffing, I stop talking (and probably start crying.)

It’s all in how you frame it

So. This article.

It’s about identifying, at a young age, children who are likely to be Drains On Society’s Resources throughout their lives, so that Targeted Interventions can be done to prevent that from happening. “Social disadvantage” is mentioned as a factor in the kind of prediction, but the overall thrust of the article is that this is about something inherent to these children. Brain function and intelligence are mentioned.

The way this article tells the story, it’s a story about identifying problem people and keeping them from messing up society for the good people by using up resources.

It would be very easy for this same set of facts to tell a different story.


Please consider:

A family on welfare– which means their children get more and better food to eat and have a safer place to live, which means those children are healthier physically and mentally, and better equipped to do well in school, with all the attendant good effects on their adult lives that a happier childhood and a better education provide–

… is nonetheless an undesirable thing according to this article. Welfare is Those 20% Of People using more than their fair share of resources and costing the government money.

But who’s going to pay for the Interventions to fix those children so that they won’t cost the government money? The government, right?

What are those Interventions going to be, if not, basically, better healthcare, better food, better education? What are welfare benefits and the NHS if not interventions paid for by the government to improve the lives of people who are poor?


As written, this is a story about saving the government money, based on the assumption that the government urgently needs to stop spending so much money on its people. It’s a story about protecting good people who produce from bad people who take. Or at best, it’s a story about pitying bad people instead of fearing them. It’s a story where spending money on social programs is a drain on society, but (spending money to) Intervene and Take Action to Fix People is good. It’s a story about taking control, to prevent bad people from doing something wrong.

It could have been a story about people who need help– who deserve help, both because helping them will help society as a whole and also because they are human beings who are struggling and they deserve not to have to struggle so hard. It could have been a story about how hard it is to thrive when you start life without a solid foundation, and what an immense positive change we can create by providing better care for all our young children. It could have been a story about how much good the government does by providing healthcare and education and all the various benefits it provides, and which of those programs are most essential, and how they could be improved.

Why did the first story get written and not the second? What makes that first story more palatable?

Pay attention to this difference of mindset, between controlling a problem and helping a person in trouble. It underlies a lot of discussions about government spending, healthcare, charity, and class and disability in general.

Do Neurotypical People Stim?

This is another Tumblr autism community controversy that I’m like a month late to.

The question isn’t really “Do neurotpyical people do stim/fidget-like things?” because obviously the answer to that is yes; the question is, should we call those things by the same name when neurotypical (or, non-autistic) (or, non-cognitively/learning disabled) people do them, as when autistic people do? Or should there be separate words?

Continue reading “Do Neurotypical People Stim?”

Re: ‘The word dissociation is overused nowadays’

1. Blame it on the psychologists who use the word dissociation to describe a continuum of stuff, from what you think of as “real” dissociation down to things that are totally normal occasional experiences for everybody. If somebody reads an authoritative-sounding informational thing that says “Most people experience mild dissocation once in a while, and that’s normal, but for a few people it’s more severe or more often,” it is not at all unreasonable that they would then use the word dissociation to describe normal/mild things.

2. It might help if we could come up with more specific words for things that are dissociation-ish but not exactly. It might also help if we could use the existing words for specific types of dissociation more often (e.g. depersonalization), instead of grouping them all together.


I’m thinking about portrayals of trauma and phobias in fiction. (Well, because I was recently reading one specific one, but the details aren’t really relevant.) The thing is, I found myself feeling really unsympathetic towards this one character, even as I recognized her reaction (to something that reminded her of a near-death experience) as both a Serious Trauma Thing and similar to how I sometimes react to things related to my phobia.

So I was wondering about why I felt that way, and I came up with a couple of things.

1. She doesn’t describe what happened in detail

2. She doesn’t describe how she felt/feels about it in detail

3. She reacts in an avoiding/shutting-down sort of way rather than a straightforwardly fearful or hurt or sad way

And like. Those are all things I do, but apparently they still strike me as unsympathetic and overreacting when someone else does them, so that’s educational I guess.