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    [Originally posted on 15 Jan. 2009, when the blog was at weblog.nl]
     

    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.

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    [Originally posted on 21 Oct. 2008, when my blog was at weblog.nl]
     
    It seems to be one of the hardest things to acquire. Especially if you're living with a partner or family, but even if you live alone. A story about requesting a PGB (Persoonsgebonden Budget; a budget given to you to spend on assistance):

    First, you need to realise that you need assistance and what kind. Some of it may be obvious, but it's harder than it seems. No one, including myself, considered I might need assistance to live on my own (or with a partner). There were mainly a lot of things that would have been very hard to anticipate: I had to just experience a lot of things before figuring out I couldn't do them or couldn't do them alone. There were also some things that we might have seen coming, if we had considered this or that and had been thinking totally rationally and all. One good thing about all this is that at least my mom and dad and brother could now start figuring all this out in advance, before the fact, for him (my younger brother). All kinds of stuff they can now already determine for him that no one even thought of for me. I'm glad of that.

    Then, you need to go about getting the assistance. There is a lot of searching and bureaucracy involved there. There are some agencies or online groups that can help, but you would need to find those too. When you've finally figured out which people you need to apply with to get assistance with your specific issues (need to apply to different places for different needs), you need to start filling in forms. Might want to consider getting professional help with that, especially if you're not a very fancy wordweaver yourself. After filling in and sending in forms, expect to make a lot of calls. You really need to get those people moving, because it seems like they will do their utmost not to get you the help you need. Including stalling.

    Then they will deny that you need the help you need. They will try to lie and say you're not eligible. If you keep pushing they will want to talk to the people who diagnosed you (because they don't believe you when you say you need a certain kind of help). After that, they will try to tell you you need to follow (and fail) all kinds of courses that are totally irrelevant to the kind of assistance you specified that you require (and if you followed any and did not fail they will say you don't need their help, because the courses will have solved your issues). They will then call up your local autism centre and ask them too if there are courses you could follow instead of receiving the requested help.

    After you've pushed them a lot (and several weeks later than the amount of time they say they need to judge your request), after your psych (or whoever diagnosed you) has told them you really do need that help and courses won't be of any use to you, after the autism centre has told them there really aren't any courses for people like you and the help you already requested really is the best and only way currently available to help you, they will grudgingly give in.

    Now you can rejoice: you will be given a budget for specific assistance for a certain number of hours per week. Yours to spend with whatever agency you think will best give you that assistance.

    Mine is for 'activerende begeleiding' (assistance with doing stuff outside of the house, like going places and buying groceries, among other things), and I will get enough money to pay for 3.9 hours of this assistance per week. This means I will finally be able to do sports twice a week (we'll have to figure out something else for the groceries, sports get priority for now): swimming. And maybe I can save up some hours to do something bigger every now and again. That is, if next year's changes to the PGB won't mean I lose my assistance again.

    ---

    On to the second subject:

    I've been fairly critical of the agency that gives me money for this assistance and that passes judgement on my claim to assistance. In a better world, I could be critical of them and not have any fear of losing my assistance. Of course, in a better world, they probably wouldn't have tried so hard not to have to help me. I find it sad that I do feel somewhat fearful (though I'm not keeping my mouth shut). Of course, chances are high that no one will ever even see this post, or at least no one who would get angry at it.

    I would like to feel free to talk about not only positive things, but also negative things I see about the agencies that give me my disability income and my money for assistance. Instead I feel very uneasy.

    I depend on these people, and there is no problem with that, and since these are things I honestly need, there should be no feeling of guilt, no fear of speaking freely. But they can make one feel like a parasite, like one's every move is being watched, like one is not free to speak as one wants, and definitely not free to do as one wants: I feel the need to perform, get a job, any job they find for me and try to keep it even when I feel that I am performing above my ability and will not be able to keep this up and stay healthy, feel the need to prove myself. I'd like to be able to finish my studies at university, get my Master's degree, find a job at my own pace that I can keep up and do from home and get all the help with that I need, write a book for which I have had the idea in my head for years now. But I don't know if I'll be allowed.

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