Blog Without a Topic

I'm the world's most irregular blogger!

(ok, that's probably not true, I bet there are even more infrequent and irregular posters out there, but it's such a nice title!)

Ok, so what's happened over the past.... *goes to check* .... jeez, 6 months! (In no particular order)

I made two guest posts on Change.org, autism.change.org to be precise: http://autism.change.org/blog/view/high_hopes_for_the_low_lands  and http://autism.change.org/blog/view/high_hopes_for_the_low_lands_part_ii

I (and a lot of other people too!) was interviewed by Elesia Ashkenazy, over at her blog Aspitude, which you should also read beyond this link because it's good: http://aspitude.blogspot.com/2009/03/world-autism-interviews-norah-vd-stel.html

I went on holiday in Cornwall with my partner, parents and brothers and it was awesome. May post pictures later.

I joined the Facebook application Farmville on the recommendation of the Amazing Gonzo (I don't think she's a magician, but you never know).

I stopped doing sports with an aide but started doing sports without an aide, in my own home, on a hometrainer, which was sort of nice and sad too, because I have that hometrainer because it used to be my grandpa's and he died, and I inherited it.

I had a suspicious mole removed from my back (test results pending).

I really liked this post on Change.org and I wanted to dedicate a blog post on the subject, so I finally will sometime soon (I promise before the end of next week).

AND CUT IT OUT WITH THE GAZILLION SPAM COMMENTS ALREADY!

Another post about leaving comments

You might have left a comment here and it didn't get through. Now, I could have decided not to allow it, but if it was a reasonable, non-inflammatory nor deliberately trollish comment, that is probably not what happened.

It might very well be that it included a certain word, that might make you think "Huh? Why ban comments that include such innocuous words?" Well, that would be because web-log gives me the option of listing certain words, phrases etc where, if a comment contains these words, it will be automatically thrown into the spamheap, I won't even have to look at it and manually disqualify it, and apparently a lot of spam contains this specific word that you were also trying to use, so it's more beneficial for me to ban that word than be loaded with spam. You might have to come up with a synonym or a different way of phrasing what you wanted to say for your comment to make it through.

What could also have happened is that I'm simply late with approving comments, don;t worry if it takes weeks or even months to appear. But you're always free to try posting it again, once, maybe twice (no more please), just in case.

How Nice Would It Be...

Triggered by A blog post Dora Raymaker made on autism.change.org (http://autism.change.org/blog/view/simulations_and_analogies_for_understanding_autism), I was thinking about helping people imagine or experience what it might be like to be autistic. You could ask them to imagine hearing hundreds of voices at the same time and not being able to block anything out. It would probably help them understand to an extent, but it is limited. Sound overload is not all there is to autism. Then there are things like 'Het Hoofdkwartier' (http://www.hoofdkwartier.org), made by the Leo Kannerhuis. That way people can experience sound and vision like autistics (or at least something that might make them more understanding). But even if you added smell as well, sensory overload would still not be all there is to autism.

These kinds of things are so very limited. No matter how well and elaborately a construction like the Hoofdkwartier is built, right now it cannot really show people what it is like to really be, at any time, an autistic person (even if you don't count the differences and focus on just one autistic person). And I think the imagination (even of the people who are the best at this in the whole world), is not capable of imagining and truly painting a picture of being an autistic person if one is not (some things are just not really imaginable if you haven't lived them).

So then I thought, what if it were truly possible to experience what it is like being (a specific) other person? (including thinking like them, thus completely knowing and understanding how they come to have certain opinions and world views and such. As well as feeling how it is being them neurologically and otherwise bodily). Maybe one day people will invent a machine that can do this.

It is something I've thought about before and wished were possible. I think I first read something like it in a sci-fi story from one of my moms books when I was very young. It might solve a lot of conflict between people (but maybe also create more). But just imagine: really knowing exactly how your autistic child or friend or whatever experiences everything, what their thoughts are like and just everything. I think many people would want that. And vice versa, autistic people would be able to experience really what it is like to be 'neurotypical'. Would we like it? (Maybe some would and some not). Would it make either 'side' want to change? Some might discover things they never imagined (like, some would find out they are much more unlike someone else than they ever though, or: some would find out that they are much more like someone else than they ever though, and much more unlike certain other people that they thought they were like). But I'm getting a bit muddled and confusing there.

Things That Are Meant Well, But Still Feel So Very Discomforting

Sometimes I see people talking about subjects, or initiating projects and such, that are so well intentioned. And the results often indeed have the potential to be very good. Still, I often find myself feeling uncomfortable, sometimes even disturbed. That is because of the almost equal potential for the results to be horrible, and worse: for the results to be horrible, while no one sees it. To many people the results will seem great, no matter if they really are great or not.

Example: The pledge on Change.org, 'Befriend an Autistic Person'. People make a pledge, as stated, to befriend an autistic person. Because autistic people can have a lot of trouble making and keeping friends. True. We often face bullying, loneliness, isolation. Also true. Having friends, even one, can help us, make us happier, improve our lives, even if it's only a bit. True again. So what is my problem with this pledge? It seems awesome.

The answer is: It could be awesome. It really could be. But it can also be horrible:

- If someone befriends someone else just because they think they should, not because they truly like the person, like being around them, doing things with them. I would want someone to befriend me because they like me, because they like being around me. Not because they think they have to, and/or because they pity me.

- if someone decides they have befriended someone, but it isn't mutual. But they don't recognise that it is not mutual. I, and probably others, might not be able to make that clear.

- if someone thinks they have befriended someone, but it is not an equal relationships (in terms of power). If they are more a sort of carer (welcome or not, and whether they recognise it or not).

I probably haven't expressed this in the clearest way, and there might be points that I forgot. But this is why that pledge on Change.org makes me uneasy. The text that accompanies the action does not warn for any of these things. Even if it does, the above things may still happen. But if people are forewarned, they will happen less (so I hope, anyway. I have faith in human beings left).

(and I really, really don't mean to hurt anyone, especially the people who initiated this, but there is a trap that is so easy to fall into, for anyone, even the warned, that you simply cannot post too many big warning signs, often. And it is currently a good example, and the only one available to me now. I need it to explain what I mean.)

Should I Write This About [....]?

I often see people asking the question: "Should I write this about [person I know]? How do I know what would be okay to write about, and what not?"

The person they know may be anyone close to them, in this case.

I think the following is a good answer, and one I would try to go by (although now that I think about it, I don't know if I have kept to this in the past, despite not having written a lot of blog posts yet).

If you think that the person you know wouldn't like you writing it, don't write it. If you think that they would not like reading this, by you, about themselves, don't write it.

Now, of course, this is pretty logical advice, and I'm not the one who made it up. It's often given as an answer to the question at the start of this post. And then the person who asked that question sometimes says: "But [person I know] will never read this anyway (for whatever reason)". Implying that it's then okay, or at least not so bad, to write it anyway. If they say this, they missed the point. It's not about whether they will ever read and understand it, it's about if they could read and understand it, would they approve of you writing it? If it's not right when they read it, it's still not right if they don't read it.

Compare it to stealing (may be too harsh an analogy for some people, but it works): It's not only wrong when you get caught. Not getting caught doesn't mean that it wasn't still a wrong thing to do.

So, I at least will try to imagine what people close to me might think of what I write about them, from now on, and refrain from writing it if I think they would not like me writing it and if they would not like reading it.