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    [Originally posted in Sept. 2010, when this blog was over at weblog.nl]

    This will be the first time I participate in a Disability Blog Carnival. September’s is hosted at Astrid's Journal and the theme is Identity.

    I was thinking about how identity can be something influenced by others and how that interacts with being disabled. In my case, at least in part - how large that part is depends - “invisibly” disabled (inverted commas both because I don’t think referring to sight to explain why people miss it is right, and because I don’t think it’s invisible at all and I don’t really know why people miss it). People will draw their own conclusions about you, even if they don’t mean to (but I don’t think most people put in much effort not to make assumptions).

    There are a lot of things people ascribed to me which were actually something else, but I’ll use one or two as examples.

    For most of my life, many people considered me to be lazy and undisciplined (actually, I’m fairly sure most people still do, no matter what you tell them). Here's what was really going on:

    -   me being physically slow because of poor motor skills and a few other factors, and thus always being last with dressing myself, doing crafts in school, etc.

    -   not being able to initiate tasks or not being able to switch between tasks.

    -   learning disabilities (or something): Shocker! Being really really good at some school stuff doesn’t mean you can’t be seriously bad at other school stuff and have genuine problems there. Well, try telling that to... anyone really; teachers, pupils, whoever.

    -   not being able to hear people and/or understand what they are saying, and/or not being able to answer them.

    -   more stuff that I’m probably not thinking of right now.

    Sometimes, when people tell you something often enough, you start believing it. And since it’s the only thing anyone ever came up with for me right from the start, I had even less to suggest they might be wrong. I had to discover that later. I doubt the feeling that “I’m just being lazy and just have to push harder” will ever really go away by now though, no matter how much I know in my head what really happens. It was incredibly hard for me to figure out what was what, too; recognising when I’m actually being lazy versus being unable to do something. Getting a diagnosis doesn’t mean you magically have an explanation for everything and it’s all set right at once, at one fell swoop. After diagnosis I just thought I was autistic and lazy. Before too, really, as I have known about being autistic since I was about 11.

    In the end, I could scrap ‘lazy’ from the list of characteristics that describe me, while for most of my life I’d been firmly convinced that it was a big part of my personality. Sure, I can be lazy sometimes, but it has to cross a certain line before it’s something you’d use to describe yourself, a major characteristic. Undisciplined though, I’m certainly that, though also not to the extent that I thought. In the sense of being a naturally chaotic person more than orderly.

    There’s another term people used to describe me mostly from my mid-teens on: eccentric. That’s if they liked me. Otherwise it would be more like freak, or nerd, or a local term implying “slow and simple”. This, I actively cultivated because I figured it was something I could hide behind: being weird on the surface so people don’t notice the weird beneath (no one can tell what your face looks like when you’re wearing a mask. I still use a picture of a mask widely on the internet as an avatar on forums and the like). Shortly put, it was my method of trying to pass when I was still trying to pass. People can be remarkably superficial that way (in only noticing someone's surface characteristics), but I still didn’t succeed, coming maybe halfway if you have to put something like that on a sliding scale. I guess people would have stopped called me slow and just called me freak if it had worked better. 

    Neither kind of different was acceptable, but I firmly felt that being different and unacceptable by choice was less dangerous than when you can’t help it, so I tried to let people only see the ‘by choice’ stuff. That’s easier when it’s really obvious and in-your-face and overblown.

    Now I’m trying to undo a lifetime (yes, yes, I’m not even quite 30 yet. 20 years is still a long time) of ingrained habits and notions that are more of a hindrance to me than a help, though at some points I thought some of it was helping (like trying to pass). A few of those things may really have helped at some point, but are now only a burden.

     There have also been instances where people told me I was something or had some characteristic that I just didn’t see, where in the end they were right. Every now and then, I’ll have less insight than an outsider. That’s a somewhat different subject though, and it’s also a lot less related to me being disabled (though some people argue that lack of self-insight is an autistic trait), so I might save it for another post.

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    [Originally posted on 3 Dec. 2009, when this blog was still at weblog.nl]
     

    [Note: ok, so that post about the drawings I wanted to make? I can't find my drawings, so that'll take a while longer.]

    Why is it that, when I technically also "have" generalised fear disorder, dyscalculia, backpain and IBS (and a bunch of allergies), I mainly think of myself as autistic? When being involved with advocacy stuff and thinking about disability rights, accessibility, that kind of stuff.

    I honestly don't know I mean, this isn't where I start off a long post answering the question I just posed.

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    [Originally posted on 30 Jan. 2009, when my blog was over at weblog.nl]
     
    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.)

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