(Progress?) Report on 2006

Of course, I’ll have to do a report on the year once again. I’ve doubted for a long time, and still doubt, whether to call it a “progress report”, like last year’s was or just a review, like the one from 2004. The distinction lies mostly in whether I considered the year successful or not. The problem is, it depends on how you define “success” whether 2006 was a successful year.

Practically, I think, 2006 was not successful. Upon starting the year, I was convinced I’d go to university by September and live on my own as I left training home to go to Nijmegen. Not only am I not there yet, but I’m also not sure I’ll be there by 2007, either. Of course, whether I go to Nijmegen to study linguistics I think (at least, it’s the only alternative I’ve still left over) or to some college to study journalism, is only a matter of which I like most and has nothing to do with educational levels, but there’s still a lot of uncertainty in my mind as to whether I can keep up at college at all, and about my living situation, I’m pretty much still a tabula rasa. So if progress is judged by where I thought I’d be by this time, I’ve regressed, not progressed at all.

This is measuring progress relatively, of course. Absolutely I did make progress, in that I’m in college part-time now, can travel to school on my own and do my shopping and housekeeping mostly independently. It’s not enough, the NFB would say. Measuring progress in absolute terms is about the worst mistake IEP team members of disabled students can make – it should be relative, cause the ultimate goal is normalcy. A while ago, I read a newspaper article about autistic children in an ABA programme in California, whose “therapy” was discontinued if they didn’t make enough progress, while the parents said they did make progress and the “therapy” should therefore be continued. Of course, I oppose most ABA programmes, but I agree with the parents who say that normalcy (or, as they call it, “indistiguishability from their peers”) should not be the (only possible) goal of a programme. So I may’ve progressed in 2006 even if I didn’t reach the ultimate goal.

That’s for the practical skills: I learnt to do my cleaning and shopping and can combine this with part-time college and can travel to school on my own, but I ain’t yet in college full-time, still can’t cook independently and still can’t do my administration on my own. There is that other side, of course, that emotional or behavioural part of my situation. I used different terms for that in 2005, but mostly just called them “some of my difficulties” and wondered about their significance. I said that would likely be an important issue in 2006, and it did, and indeed, mostly just like it’s ever been since 1998. I hope that in 2007 it can be an important issue in some other ways than it’s always been ever since 1998, but I’m pretty skeptical as it requires communication that I lack. I’ve been looking all over the place for specific information about my situation which I could put into an automatic translation programme (after all, when I have to write something that I don’t understand, grammar is always bad anyway), print out and take with me on Wednesday, but all I could find was catch-all terminology.

Have I progressed on the emotional/behavioural level, too? Well, in one sense, not at all. My behaviour hasn’t even improved absolutely – it’s deteriorated. That’s the one clear thing about a relevant topic I managed to tell the folk from mental health on December 12: that, while I’d always had behavioural problems, I did feel I’d gotten worse quite a bit over 2006. I can tell this from the paradigms others hold, too: even as late as last August, Arda was telling me that really there was nothing wrong with me and she could tell if I were crazy cause crazy people act crazy even when they think they’re normal, and now you know where we are now – or where we’re planning to be if for God’s sake I can communicate.

Emotionally, as in how I feel about myself, the situation is a little more complex. I started out very confident but also very much dissociated from the parts of me that weren’t all that confident. I remember those early weeks at training home: I seemed to know exactly where I was and where I wanted to be, but I know (and probably knew at the time) that it was all based on expectations. As soon as I started noticing I wasn’t meeting them, I got frustrated and eventually freaked out.

Expectations didn’t decrease after March 21. Of course, the pressure from having to be at university by September, had gone, but I now think that, had I followed the same path I was on in March, 2006, I woudln’t have been able to go to college by September even if I was holding on.

Wait. I have to differentiate here between expectations of practical skills, like cleaning or mobility, and expectations in other areas, like scheduling, being able to find a recipe, social skills, etc. In the former, I was holding on quite nicely and the pattern of learning didn’t change after March 21. No-one was expecting me to cook independently before then – I first cooked with Ellen on March 15 -, so we couldn’t tell whether I would be able to. And as for cleaning, what is there still to learn but to keep my structure? I can clean independently and I could by March 21, mostly. With mobility, one might think my skills have decreased, but factually, they haven’t: all that’s changed is that we don’t tend to schedule practising a route when I don’t need to use that route, while we used to do that with other routes, so it’s taking longer but not more practice.

The other skills did not decrease, either. In July, Arda was angry cause I supposedly “suddenly” couldn’t find a recipe anymore. I informed her, factually, that previously no-one had expected me to find a recipe completely independently but I would sit there with a staff member and they’d ask what I wanted to cook and I’d say something like “rice” and they’d help me find a recipe with rice, or I’d tell them that I’d already cooked rice last week and we would be having macaroni the next day, so what else could I cook, and they’d suggest something like bami. Then Arda got to speak of progress. Yes, that’s what it was: I wasn’t making progress, but my skills weren’t decreasing, either. By the way, we got this problem solved pretty much by October as I had enough recipes to choose from, and now I just pick one from the list in my computer. The same goes for scheduling: when I started doing my own scheduling, first in July adn later in October, there didn’t occur major changes. I could just copy/paste my old schedule and do some experimenting if I wanted to (in October, inspired by my new theories about “realism”), but I didn’t need to change big parts of my schedule. So what’s the problem when I go up to Renee asking her to help me schedule when major changes are about to occur? Is that “suddenly” not being able to schedule anymore? No. I can schedule nicely for the week starting January 8, because that’s a perfectly normal week again. You may expect the progress that I can eventually account for major changes in my schedule, but I don’t know how to.

My behaviour did deteriorate in 2006 – I cannot say this was just not progressing, cause it was really absolutely worse than it’d been before. I said this to the mental health folk on December 12 and said I didn’t know why that was, and Renee theorized that expectations in social/practical behaviour – not my biggest strength, obviously – had increased. I think this is true in a way, but I find it hard to differentiate this from just not progressing, while it is really something else. It’s hard to distinguish these two, cause what would’ve happened if the same behaviour were expected of me let’s say two years ago? I probably would’ve been exactly where I am now, but that doesn’t mean it’s just about increased expectations, cause I do freak out much more than I did before. So I think it depends on how you measure progress: if progress is responding in a more acceptable way to a certain situation, I’ve not progressed, but not deteriorated either; but if progress is measured by how often and how severely I freak out, I’ve deteriorated quite a bit.

Now is 2006 like 2004, cause I’ve seemingly only gotten worse relative to the expectations set for me? In one way, no, in that I feel less dissociated from myself. This is some statement I have to be careful with, cause it connotes deliberately acting out, which I don’t do. I don’t quite exactly mean behaviour, indeed. What I mean is that I can be more honest about the actual problems I experience. Like, I’ve been cooking with Ellen for nine months before admitting why I couldn’t do it completely independently. That may seem like losing a skill, but it’s rather coming closer to where I really am. I wanted “realism”, in early 2006, but the first thing required for that, is to be honest about my actual situation. I try to be that, now, though I still cannot completely accept the idea that being honest about your problems allows for more openness to solutions than pretending the problems aren’t there.

In another sense, 2006 did end like 2004, in its being so open-ended: on January 1, 2005 I had no idea what the second half of the year would be like. It’s pretty much the same now, in that I have ideas of what I want adn what I can and what I should, but at this moment I cannot seem to form a picture out of them. That is in a way more troubling than the situation of 2005 – all I had to do, at the time, was decide to delay college to go to rehab -, but in a way, it’s more comforting, in that I do at least know that I want to be in college, but that I don’t want it to go like it went this year or in high school and therefore, I feel I’m apparently incapable cause I cannot think of “colour pictures” that work. Will I find one in 2007? I’m not sure, but I hope so, cause I don’t want to give up altogether.

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Confused and Frustrated Rants on the Mental Health Thing

Today is a very confusing day and I’m dreading having to spend the whole week-end till Tuesday completely alone. I may go to my parents on Sunday, but I’m not quite looking forward to it as I’m so confused. Freaked out extremely majorly today. Broke seven objects – all mine. Broke the entire collection of cups and plates I got from my parents for St. Nicholas this year – I knew as I received them that they wouldn’t survive the turn of the year. Insulted Renee quite majorly. Don’t know what I feel. I didn’t want to insult her and feel sorry for that, but at the same time I feel extremely misunderstood and misunderstanding. It started out about my schedule and how next week’s going to be a busy week and Renee was sending really confusing messages, at one point trying to get me a completely filled schedule which I hate, and then telling me someone could do some cleaning for me when I was at the rehab centre for a computer training next Thursday/Friday. I was already confused and so she left me alone. I stood in the kitchen for half an hour just standing there and staring at the wall. It’s something I do quite often when I’m confused and want to calm down, but it turned out to be extremely annoying – something I still don’t understand, cause I didn’t do or say a thing. Renee came back and was like: “Are we going to continue our discussion or isn’t it going to work out?” Well, it wasn’t going to work out and we had to continue the discussion cause there would be no other moment till Wednesday. So we sort of finished the schedule even though I still didn’t really understand – I’d be glad if next week the schedule can be normal again so I can do it completely on my own without trouble. Then we got the stupid mental health questionnaire on the table again. The statement I managed to make last week was along the lines of my not holding on and wanting to understand that, but well, isn’t that the reason why everyone is going to see a mental health folk? If you’re holding on and understand everything, there’s no reason to seek mental healthcare, is there? Renee said it was a fine explanation but it wasn’t with me, cause, even if it worked for the questionnaire (really it doesn’t matter what you put in there, especially if it’s vague stuff, I hope), I would still have to explain. The folk on December 12 could tell from the very fact that I was there that I wasn’t doing alright and she could tell that I may not understand how to work on that from my being there, too. Still, we got the worst question one can ask me and you know the result. It’s going to be the exact same way if I have this sort of logic for a reason to go to mental health. Renee then got into a list of all sorts of behaviours that I exhibited according to her, most of which I agreed with. Could’ve written them on the questionnaire, but of course she didn’t as they weren’t my ideas. Duh! So she got to write out my statement that really doesn’t say a thing. Hell, I agree more with *her* statements than with my own as far as putting them on the questionnaire is concerned. But today I believe it doesn’t really matter. It’s all going to go the same way it always did anyway. Hell, it sucks that I do have a problem and I really feel kind of distressed by it and I feel I’m getting stuck, and yet I cannot seem to explain any of this in any way that people aren’t going to react to like: “Well, we’re really sorry for you, but we have no idea what’s going on with you cause you won’t explain, so we have no idea how we might help you.” I *can’t* explain this stupid stuff. And all that I could explain, are not my words but someone else’s. This evening, Renee came up with her own paradigm: something about difficulty coping with changes (what sort of changes, I wonder?) and freaking out at them. She said I could tell this to the family doctor. Jutta said something else. Arda has her completely own paradigm. And they’re all right, at least, sort of (the thing about changes is, in my view, not well-defined enough, but that’s not for the family doctor to need to know). And they confuse me. And even if I just decided to pick Renee’s paradigm (or whatever paradigm for that matter), how would I communicate this? I’m afraid that I’ll get majorly “locked up inside” again and I know this is going to be a self-fulfilling prophecy. Renee found I was ovverreacting as I complained about the fact that I just can’t explain my situation and indeed went on quite negatively. Well, really, if I can’t communicate, we’ll indeed have to wait for the day when it doesn’t take communicative ability to make clear that I’m falling apart. Renee said repeatedly that she didn’t know what I should do, she didn’t care and she didn’t want to talk about any of it anymore. Okay. Why in the world did you decide to have me go to mental health, make an appointment without my even knowing it, let alone consenting, not discuss anything with me about the thing except for your own paradigm (the ASD thing, which she could’ve known I wasn’t going to follow and she fortunately didn’t, either), still expect that I clarify the whole thing, then tell me I didn’t say anything at the admission interview (hmm, I didn’t say much, but I did explain some things) and now eventually say you don’t care and it’s all my problem? Hell, I thought a situation was worse when the mental health patient refused to seek help, but I think this is a hell of a lot worse: I certainly want to go to the freaking mental health place because I feel I’m getting stuck quite a bit, yet I cannot explain this in any way. So I guess on Wednesday we will get the exact same freaking situation we were in last week so we can just cancel that freaking January 16 thingy and I can seek out the whole thing for myself cause apparently I wasn’t willing to communicate. Sure. More getting stuck here. More just holding on. Probably going to get kicked out of here. Quitting college. Don’t like it anyway. Maybe I could become like those psychotic folks on the streets in the big cities whom the mental health system is reaching out to even if they don’t want help. In other words, completely give up. Black image. The white one is unrealistic anyway and the coloured ones are unreachable cause I don’t seem to have the ability to communicate the painting’s outlines. I don’t have the motivation to, I guess, Renee would say. She has her own little paradigm about every problem of mine – bad behaviour is attention-seeking, “locked up inside” is not trying -, so I wonder why in the world she thinks we need mental health involved at all, anyway? I want them involved cause all the old paradigms don’t work, but that’s the same “I’m getting stuck and I don’t understand why” logic that is completely self-explanatory in mental health: if something had worked, I wouldn’t need to consult mental health to confirm that what we’d already found out, should work based on whatever my situaiton might be labelled. But I cannot explain any of this. It’s all Renee’s words, or Jutta’s, or Arda’s. Why did you think I’d always used the catch-all term “behaviourally disturbed” for myself? Why do you think I’ve always used whatever others were saying about my behaviour? I can tell from my own experience that I’m getting stuck and I might be able to describe what I do when asked to give examples/explanations – that’s how I got to explain a little bit about the behaviour stuff -, but, intrinsically, when having to explain what causes me to get stuck, it’s always someone else’s words. I think my insight in my situation is really much much poorer than I thought it was. Hell, even when using labels, I failed miserably at explaining why I believed I had said disorder. I never, ever told anyone why I thought I had an ASD. I just thought I did cause my father told me I did and, once I was on the mailing lists, I was able to explain how certain ASD symptoms worked for me, like when we once had a discussion on self-injurious behaviour, particularly hand-biting, which I used to do quite often, I was quite able to explain to a mother that, if she wanted her child to replace hand-biting with a more acceptable release for her frustration, she should have the alternative ready for the girl to use whenever she got frustrated, cause once she was frustrated, she might not be able to think: “Oh, I’m frustrated and I want to hand-bite, but I shouldn’t and instead I should use [whatever alternative the mother had in mind].” On the other hand, when I first was a member of a mental health list that’s not label-specific (I recently resubscribed after having been gone since 2004) and went to its first meeting, another member asked me what Asperger’s Syndrome was (I was the only one suspecting that) and I got into a really stereotypical explanation about active but odd social behaviour that really had no relevance to my own situation. I hardly ever even did explain anything about my situation except when others asked questions. There are a few exceptions when I explained about not understanding social situations, and, later, I managed to do a post on some forum on the “locked up inside” feeling (that place was not related to ASDs and it was far into 2006). That’s about it. When having to re-intro myself for the mental health list I just mentioned, I was almost glad I could mention my previously having been there cause I suspected an ASD, even though I don’t focus on that now, cause that made for an easier way of justifying why I was there. None of this is going to work out at the family doctor’s or the mental health place if I’m going to get there, of course. So how do I do it, then? Renee mentioned decision-making again. Hell, shut up with that inevitable decision-making paradigm of yours. Whenever you don’t understand something, it’s something of my having to decide. I’ve long made my decision, by agreeing to go to the mental health place. I myself do want to go there and can defend it to my parents, who know quite well what’s going on with me but don’t believe I’m really getting stuck. The mental health place folk is the other way round: she’s most likely going to take all her clients seriouslya t first, but it has to be somewhat clarified why they believe they’re getting stuck. Look: if you were just fired from your last job – and had been fired from many previous jobs before – and you’d lost your friends – or you’d never had any -, it’s quite understandable that you have significant impairments in functioning that a mental health folk would take seriously if you were to consult her, but you would have to explain about the circumstances of being fired and losing your friends and I have great difficulty doing this for why I’m getting stuck. I could explain why I couldn’t do certain things. Like, I can’t cook independently cause most recipes aren’t clear enough so I tend to forget little details (I just modified some of my recipes to account for this), I have difficulty when going to the doctor alone cause I usually can’t clarify my complaint (also physical complaints) except when they know what I’m there for (like I can go for dental check-ups independently and could go to the neurologist last year on my own), and I can’t do my schedule independently when significant changes are about to occur cause I have difficulty planning then. Note that there is nothing about my behaviour in this statement and only a bit about communication when mentioning the doctor’s visits. Sure you might say my behaviour is troubling, and it is, but why is it specifically this that’s getting me to get stuck? I’ve so far not freaked out at school, and yet I feel I’m getting stuck there, too. Why? I don’t know. So, yes, sure I could mention behaviour (hell, no: “anger tantrums”, behaviour is everything), but I have a lack of understanding of why I should. It’s not out of defensiveness or out of not caring – that’s why I tried to explain it somewhat to the mental health folk (I wouldn’t have if I didn’t care or was defensive) -, but out of not understanding. So, here I am, getting stuck, having constantly changing paradigms about that – remember that in 2002-2004 my focus wasn’t on anger tantrums at all, but on social skills that now everyone agrees to are fine -, not understanding a thing about this and yet having to have something for the family doctor and the freaking questionnaire. And having to communicate, which is even worse. “Just open your mouth,” Renee said. I used to have a habit of moving my lips without producing sounds when I got extremely “locked up inside” and wanted desperately to speak, so it doesn’t work that way. Boy, this may be why I’ve come to hate getting “locked up inside” so much.

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School Rants

Today, I have nothing to do except for studying which I’ve been doing some but don’t feel like cause I was unable to sign up for the exams (first couldn’t, then forgot, then tried again but couldn’t and now the sign up period has expired) so may not be able to take them. I personally think it’s ridiculous that I’ll have to sign up for new exams while I still don’t have the old one back (or my grade, for that matter). Sent Elma an E-mail, but because part of the problem is that I forgot, she may just tell me it’s my responsibility. Don’t know whether I care. At this moment, I feel extremely unmotivated, cause I see no way I’m ever going to complete this stupid year and if I am, so what? I’m not going to study any of these programmes next year anyway.

Psychology paper is getting somewhere. I do it on mental retardation, cause I wanted something I could get myself to perseverate on so I wouldn’t need to put that much effort in motivating myself, and yet something I wouldn’t self-identify with. I hope it’s good enough at least, but well, whatever. That’s 3 ECTS (credits) if I get to complete this.

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Is Anxiety Significant in the “Locked up Inside” Issue?

Is anxiety not something “significant” in the “locked up inside” issue? I seemed to imply something to that effect, but I didn’t mean it. Anxiety used to be an overemphasized factor – recently it’s been underemphasized -, but that is not synonymous with the seriousness being minimized. That happened, too, and I participated actively in that, but that was not because it was related to anxiety, or because I thought it was. In 2003, when I pathologized my “locked up inside” feeling, I thought it to be clearly an anxiety symptom, because if it wasn’t, I didn’t call it “locked up inside”. Anxiety is not something that you “just overcome”. The thing is, of course I did overcome some significant anxieties that used to cause a large number of the “locked up inside” situations, namely, when I learnt to ask for help in blindness-related situations at rehab. So yes, it can be overcome, and I want to emphasize here that significant is not necessarily pathological. That applies to what my mother says in reference to all of my mental health symptoms, as well: she tries to deny their significance, while I am still not really sure it’s pathological but am certainly sure it’s significant. Like, if I’m “not cheerful enough” and that causes me to have all my problems (if that were the case, which I personally really don’t believe), that didn’t mean I had some mood disorder by definition, let alone a severe one, if only it were cause of the fact that I wouldn’t meet criteria for severe mood disorders and the mild ones couldn’t explain all of my behaviours. What it would mean is that I was experiencing significant problems due to being “not cheerful enough”. Just because something isn’t in the DSM-IV, doesn’t mean it’s not significant. “Locked up inside”, in itself, is not in the DSM-IV, but it’s most definitely significant regardless of cause. Aggression and low frustration tolerance are not in the DSM-IV. Does that make them insignificant? None of what I experience, in and of itself, is in the DSM-IV. Heck, people are not disorders! But does that mean that my experiences are not significantly impairing me at this moment? Hell, no. People who leave the diagnostic process with an official “no idea” status don’t suddenly become normal. People who are given a diagnosis of stress or depression when their real problems are in social functioning, don’t suddenly gain social skills. They might, if their diagnosis was correct, but assigning a label that’s often popularly thought to be insignificant, doesn’t suddenly cure the problems. That’s why I don’t have a real problem being told that my behavioural problems are related to not being cheerful enough or my communicative difficulties due simply to being too scared, beyond just not believing this is the full story. If I learn how to be more cheerful or less scared and it works, that’s great. If that magically causes my behavioural and communicative difficulties to go away, that’s even greater. The thing is, now my problems are significant, regardless of what they’re caused by and what that’s called and whether that’s in the DSM-IV and what category it’s in. Anxiety is in the DSM-IV. Being “just scared” is not. And yet it’s only a matter of perspective which is which. That’s why I have a problem with the anxiety paradigm (beyond not believing it’s the full story): if it were called anxiety, that’d be fine. Now that it’s called being “just scared”, it’s not, because it trivializes its significance and offers ineffective strategies.

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Thoughts on Communicative Difficulties and Self-Expression

Today was a reasonably good day, though I am feeling kind of sad and am pretty tired cause I’m still experiencing significant insomnia – though, in Renee’s view, that seems to be my choice cause I refuse to ask the family doctor for sleep meds again. I don’t see it as any more than logical that just because I don’t like meds, doesn’t mean I want to be insomniac, but well.

I’ve been thinking about that contradiction – that thing about my being intelligent and yet my having significant difficulties in behavioural/social/communicative functioning. I struggle with conceptualizing my situation and keeping my own perspective. I’ve never had the best of self-expression skills, and yet, there’s no reason why I shouldn’t have them even if I were far more disabled than I am now. There are people with a lot more severe disabilities than mine who can stand firmly for what they believe – Cal Montgomery is among them. I don’t know her personally, but from what she writes, I can see that she’s kept her voice in the figurative sense. And she doesn’t even need a literal voice to have her say – if I am correct, she’s partly verbal and used to be unable to speak. And yet I never had a speech delay and I’m highly verbal in most situations, only losing my ability to speak or experiencing word-finding problems when I’m overwhelmed or extremely anxious, and yet whenever I lose my literal voice, I seem to be losing the figurative voice as well. I didn’t like how the family doctor’s appointment went on Wednesday, but I think now that I like the doctor’s attitude, insisting I say what I’m there for. I don’t like how I felt when trying hard to form words but not being able to cause of some anxiety as well as being majorly overwhelmed, but I think I do like the fact that I was allowed – even expected – to communicate. Now, I want to really get clear my situation and what it implies for the mental health thingy. What Renee wrote down from what I said on Wednesday afternoon, lacks any meaningful content, so go ahead and create content: if I feel I’m getting stuck and want to understand this cause I cannot work on it by knowing that I’m blind and intelligent, then why am I getting stuck? Here’s a list:

1. I get frustrated really easily when something doesn’t go my way or I don’t understand a situation, causing me to get angry and sometimes aggressive;
2. I have pretty significant communcative difficulties in a lot of ways and for various reasons, sometimes related to the not understanding thingy and sometimes related to other things (anxiety, etc.). Find it hard to elaborate on this or to make it into something understandable.
3. There are some other things floating through my mind, but I can’t get the words right now.

Still a few more days to figure out the right words for these other things and to shorten the first two things into something understandable that makes sense and to translate them into Dutch (or just write a Dutch list). It could get into some pretty neat things for the freaking questionnaire. I guess, if I get something clear, I’ll just write it down and take that to the family doctor on January 3, cause I cannot rely on my speaking abilities then anyway.

There is something strange about those communicative difficulties – particularly in the forms where I lose part of or all of my ability to speak -, that is that I, till pretty recently, never considered them significant. An exception was the summer of 2003, but that was the time when I pathologized everything about myself, so that’s not strange. I used to mention communicative difficulties when discussing my situation, but I usually meant the pragmatic problems my classmates seemed to mean when they criticized me – after we had already been discussing the “locked up inside” thing. These problems are in some ways related, in that sometimes pragmatic problems got me to be passive, like in high school when having to form groups: I never did that and remained passive, even “locked up inside”, cause I simply didn’t know how to ask people to cooperate with. I rarely experienced being “locked up inside” that couldn’t be attributed to a pragmatic communicative deficit, but that also meant that when something was related to pragmatics, it came across as passivity, not being “locked up inside”. “Locked up inside” was what I experienced when I was having a discussion with Mr. De B. and he started talking about social skills, but well, who cared about social skills? If he just stopped nagging about those freaking things and just asked me if I had good grades, I could’ve replied that I did and no-one would’ve known that I had problems communicating where I got “locked up inside”. You might interpret last week’s mental health admission interview or Wednesday’s doctor’s visit in the same way: if I just didn’t care about mental health, I shouldn’t have gone to either appointment and neither healthcare folk would’ve seen my struggle with communication. Yet this is flawed logic, and that’s why I’ve come to see my difficulties as more significant than I used to: anxiety was not the most significant factor in either appointment, and it was certainly not the only one. Last week, for example, I said I hated open-ended questions. That’s not anxiety. Anxiety usually is the problem when I have to answer a really close-ended question and still can’t, like when Dannie asked me whether she had to do the speaking to my classmates in my discussion with her, Arda and Elma: I was afraid to ask her to help me do the talking so that’s why I didn’t respond. Open-ended questions, when I have the answers, are usually far easier to answer, as the mental health appointment illustrates: if there were one thing I could’ve been anxious about sharing, it was my far-from-lovely behaviour, cause I’m really ashamed of that, yet it was the thing I was least unclear about. Now what is the case with open-ended questions that I can’t answer? Usually, it’s something of my either not understanding the question, not having the answer clear in my mind or not finding the right words for it, or a combination of these. And of course, the line again isn’t all that strict: in many situations, anxiety contributes but so does being overwhelmed, like when the family doctor asked me what I came to see him for: I still experienced some anxiety regarding mentioning I had mental health problems, and I also felt overwhelemed by the situation cause I’d jsut had a major argument with Marianne and I was really ill-prepared.

Now how does all this relate to self-expressiveness and having a figurative voice? It’s simple: many people, even the ones who know I can communicate, tend to take over from me whenever I get “locked up inside”. The thing is, they don’t take away my voice, and most certainly not because they don’t want me to have it; all they do is to speak for me when they don’t know how I’m going to speak for myself. Yet no-one ever took away my alternative means of communicating, so why don’t I use it? Sometimes, writing isn’t possible and sometimes I cannot express myself through writing either (like with the mental health explanation for teh family doctor), but that’s by far not the only reason why I’m not using it. The main reason, when it is possible, is simply that I’m taking away my own alternative technique, cause *I* think I should be “good enough” to speak. Of course, I have no reason why I can’t, but explanations never change a situation, I’ve said a hundred times before. I have no real language impairments, of course. I may “just” have anxiety – I don’t believe that, but I may. Still, so what? That doesn’t change the way it works for me.

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More Thoughts on the Contradiction between My Intelligence and Behaviour Problems

Has this contradiction, that I wrote about this afternoon, always been there, and has it always been to the same extent? The first question can simply be answered affirmatively. Well, no, it can’t, since I can’t remember all of my life, but for so far as I remember, it’s always been this way. That’s exactly what the fights stemmed from between my parents and the schools for the blind. That’s why I was sent to remedial educationalist after remedial educationalist till my parents eventually had the answer they wanted: that I was good enough for regular education. Technically, they didn’t get that answer – they got the answer that I should be using the remainder of the 1998/1999 school year to sit in on regular ed classes to see if I could deal with that setting starting by August, 1999. It got down to five days in May and June after I had already been accepted unconditionally at my regular high school. But that’s not my point. My point is that the fight – the good enough for regular education vs. bad enough for low-level special ed debate, which, in essence, was a debate of whether I was intelligent or behaviourally disturbed – was going on even in 1997 till 1999. I had much less of a voice, in the figurative sense, than I have now, simply cause I was a child, but the same logic happened then: I only used my voice when I was the “good enough” me. I remember a discussion with a high school teacher on its open day in 1999 when I stretched the importance of a small school with only one educational level as a positive point. I meant it, sure. I never say anything I don’t agree with, and, when I’m “good enough”, the small school with one educational level is certainly an advantage. Somewhere, Cal Montgomery differentiates between impairment and disability and considers Bruce the embodiment of impairment while Mary signifies disability. A small school with one educational level was a barrier removed for someone with blindness as a disability, because it meant a smaller building to learn routes around and the possibility that teachers will get to know me quickly cause there simply aren’t so many. It did nothing to lessen my behavioural and social/communicative difficulties and neither did any other accommodations. Well, my tutor eventually, in the higher grades, did some “translating” back and forth between me and teachers and most teachers had significantly lowered their expectations of me by the eleventh grade as compared to the seventh grade, at least as far as behaviour is concerned. I held on in high school, of course. I managed to keep the “good enough” image at least, cause, of course, “good enough” doesn’t necessarily mean perfect. Yet I was still also “bad enough”. That never changed. I’ve always been both and it depends on which “expert” you were to ask which was emphasized and to what extent. My parents often told me I made their lives miserable and so did Sigrid. They’ve had all kinds of paradigms about that that I’m not going to go into now, since I’ve done so many times already. See this entry for an overview.

Has the contradiction always been equally noticeable? I don’t think so. I’m not sure why this is, but there are several factors contributing to it, I think. The first is that it was never acknowledged. In elementary school, I was mostly behaviourally disturbed. My parents knew I was intelligent and stretched this, but everyone knew I had behavioural problems. It was in this context that the only situation in which my parents accepted help for my behaviours happened. It was pretty useless – four completely worthless sessions of play therapy when I could’ve been in biology class in 1996 -, but it was there. I know that my parents were talked into consenting by the school social worker, but I don’t know whether my parents’ self-determination was just less than it was a year later when they resisted the 1997 report to that same social worker, or whether my behaviour was truly so bad that even my parents thought I needed help. Later of course, they never denied that I had problems with behavioural/social functioning. All they said was that it was more important that I’m intelligent. Yet I was the behaviourally disturbed kid and I don’t think I was seen as pretty much anything else. My parents used to treat me as if the intelligent girl was hiding behind the behaviourally disturbed one, cause they never seemed to get it that they were using the same mistakes the school was: to assume that a behaviourally disturbed kid can’t be intelligent, and vise versa.

Then in high school I was the intelligent one. I remember the time, in early 2002, when “I don’t understand” was almost as big a part of my vocabulary as it is now. My father told me I’d have to use my analytical intelligence to think out solutions for those social/behavioural problems and got really pitiful when I told him I couldn’t. I also remember the time in the tenth and eleventh grades, when my tutor was desperately trying to get me to adopt social skills. When I told him that I didn’t understand, he explained the situation that got him or someone else to criticize me and I said I would think better about how I behaved. I did think, and yet I didn’t understand, but I didn’t have to as I still got high marks in school.

What’s my current situation? No-one can deny I’m intelligent. I am, after all. This is not by the grace of some IQ score, but by the fact that I graduated from high school, am now in college and can talk politics on a level most staff don’t understand. And yet I’m behaviourally disturbed. I have major word-finding problems in some situations, if I don’t get completely “locked up inside”. I had these problems in high school, too – well, the complete “locked up inside” stuff, the word-finding problems emerged when the complete “locked up inside” stuff decreased slightly last spring -, but practically, it didn’t cause major problems cause my tutor, father or sister was there to clarify, simplify or solve a situation for me when I failed. I have major temper tantrums where I may get aggressive. These have increased in severity over the year 2006, but have always been there to an extent and have been much more severe than they were in 2006. I think the practical/social demands on me are heavier than they were in let’s say late 2005, which might in part explain the increase. This was a part of my problems that I could never really deal with effectively, but it was still either brushed off or laughed at or screamed at or all of this. Sure I was told I was a retard, autistic, psychotic, abusive, a bitch, and all sorts of other things. It never changed the way I behaved – because simply punishing (or ignoring, which also happened) bad behaviour will not teach someone good behaviour. At least not me. I remember a parenting program on TV a few months ago in which a five-year-old boy was constantly screaming and whining whenever he wanted his mother to do something. The psychologist advised the mother to ignore the behaviour and suddenly the kid began to ask questions, which was of course reinforced. All great, but I still wonder how that kid learnt to ask the right questions. I’m still having trouble with that at age twenty and that’s anxiety aside.

Sometimes, I think I’ve gotten a lot worse in this past year, and sometimes, I think I’ve not really gotten worse at all. The contradiction in my functioning is more pronounced than it used to be, but that doesn’t make it any more or less real. I, personally, have a lot of difficulty answering that question from last week: if all my problems had been going on for years, why was I now in mental health? My answer is really that I would’ve been there three years ago if I’d had the skills and knowledge to take the initiative. My behaviour may’ve gotten some worse in 2006, but I’ve also needed to meet higher practical/social demands as well as academic ones and I still notice that I’m sort of in the position that started by late 2004 when I feel I can’t hold on anymore. I thought this should be over after two years, but probably it still is not.

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Initial Thoughts on Cal Montgomery’s Critic of the Dawn

There are a lot of things I want to write about today. Mostly, they are concerned with the strange dichotomy that Cal Montgomery discusses in her article Critic of the Dawn, where there is some line in cognitive or behavioural functioning, above which people are supposed to be good enough to have a voice that will be listened to, and below which people are supposed to be bad enough to be “cared” for or “treated” and, by this grace, lose their ability to have a voice. The “good enough” people, however, don’t need their voice to communicate their needs – they are “good enough” to adapt to society’s demands – and the “bad enough” people can’t communicate their needs in an effective way – they’re “bad enough” to have others do that. And here I am, with a clear voice that I can’t always use, an analytical ability that’s compromised whenever situations are too unclear, and bad behaviour that I realize but can’t change. And here are others wanting me to be “good enough” so I can use my voice and people making decisions for me whenever I’m supposedly “bad enough”. To give an example from the mental health department: eventually it went alright – well, it didn’t of course, but that was not for others’ sakes; but, principly, it greatly angers me that I was very ill-informed about the whole procedure leading up to that December 12 appointment. No-one said anything I disagreed with in front of a healthcare professional, but principly, I feel I was left out of the decision-making process in some really fundamental ways. Apparently, by November, I was “bad enough”. This may’ve been compensated by the expectation that I clarify my own reasons for wanting to go to mental health after the failed December 12 appointment and my being left to my own resources at the family doctor’s yesterday. In this situation, I’m assumed to be “good enough”.

There are other, less fundamental, examples. I was greatly angered this morning when I went up to Renee asking her to help me with some scheudling for Tuesday. I was “good enough”, cause I had a voice. She refused cause, she said, I could do it myself. Well, I’m not asking you for help cause I can do something myself. She and Arda got into a decision-making litanny and I felt confused by everything they said about how I could get up at 8:15 AM if I wanted to (I told you I didn’t want to) and how some people lie in their beds till 1:00 PM on boxing day (I told you I had things to do, that’s why I asked you to help me schedule). Then, for some reason, I became “bad enough” and now Renee is angry with me, understandably and rightfully, for misbehaving. Okay.

The thing is, there is no such line. I’m “good enough” to have a voice and to want to use it and to want to be involved in decision-making even if the result is something I agree with and to want to be allowed to ask questions if I think I need answers and I’m “bad enough” to not be able to use my voice all the time and to have difficulties in communication and behaviour that get me and others to wonder what might or might not be wrong with me and hence contact mental health and to be unable to communicate these same difficulties sometimes and to sometimes need help with such things as scheduling (while, I might say, this is only when things are unusual, cause I always do my own scheduling). And I’m “good enough” in some situations and “bad enough” in others and sometimes I’m both “good enough” and “bad enough” at the same time. So what? I’m still me. Of course I want to understand, but that doesn’t change anything about that situation of mine. If I’m assumed to be “crazy”, that doesn’t mean I don’t have anything to say even when I can’t always communicate for whatever reason and even when I may behave in ways that adults aren’t supposed to, and if I’m assumed to be fine, that doesn’t mean I can suddenly communicate and behave.

By the way, before anyone tells me: I know Cal Montgomery’s labels, but that’s not how I found her article. I learnt about it when reading activist anti-ABA articles a few years ago and I agree to its emphasis, so there.

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Family Doctor Appointment

Well, just because I say it doesn’t take 100% clarity to clarify something, doesn’t mean I can practically clarify what I have clear, let alone that I can take the steps to communicating this – or the part of it that my family doctor needs to know. It didn’t work out at all today – the appointment with my family doctor went even worse than last week’s appointment. Same outcome, by the way. New appointment is January 3 at, if I remember correctly, 9:10 AM.

Now I don’t believe anything’s going to be different then than it was now. I can’t communicate, so how to communicate that? I, by the way, broke my making a fool of myself in front of a healthcare professional record. Hmmm, I guess with my former family doctor it went quite a bit easier most times, but that wasn’t for the family doctor’s qualities but cause either I didn’t need to make anything clear (my mother or father went with me) or I did, but it didn’t really matter that I couldn’t, like last year with the whole headaches and all re possible hydro complications etc. stuff, cause eventually the complaints went away without anyone ever having known what was wrong. Well, who knows, this stuff might just go away, too, or I might pretend it has gone away till I break down so majorly that it doesn’t take communicative ability to clarify my situation. You see, today I feel like completely giving up on everything. School went horrible on Monday and I couldn’t get off the train in time on my way to Deventer so I got majorly freaked out in front of eventually a whole lot of strangers watching from the nearby platform that I couldn’t get onto cause there were rails (or whatever that’s called in English, those things the trains ride on) between the open door and the platform. Eventually they all excused my behaviour by the fact that I’m blind – sure. And yesterday the whole freaking scanning and cooking stuff went wrong and I felt like dropping out of school. I still feel like that. I just can’t hold on any longer. And I can’t even communicate that. Marianne says I wasn’t trying when I freaking was. She asked me why I hadn’t taken the piece of writing I’d done on Sunday with me to let the doctor read. I hadn’t even thought about it this morning and even if I had, that writing is totally useless. It is not even fit for that freaking questionnaire, and those folks already know I’m not filling it out cause I have an ear infection. Well, the doctor could tell this by now too, cause I was making a major fool out of myself and besides, I managed to confirm his suggestion to that effect, but you know, you’d have to have something pretty clear already if you’re going to get into a family doctor’s office. It even goes that way for physical complaints – like the headaches etc., last year, cause the fact that we eventually ended up with an official “no idea” status is in part cause I wasn’t able to clarify my situation at all -, and it goes so for this stuff even more. Even after the appointment has passed, I can’t think what these few words would’ve changed about the situation. Maybe I can get some more by January 3, but I’m not sure. Marianne wanted me to write out what I want from the family doctor, let Renee read it and bring it along by January 3. I so far cannot get anything clear. Maybe I’m just too damn stupid for that. Maybe, if I just go on, I’ll someday freak out to the point where no-one needs to have me communicate that I’m getting stuck. I guess, if I can’t get a thing clear by January 3, it’ll be a great (well, not so great, as I hate it) experiment for 2007 to find out how long that’s going to take.

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Thoughts on a Seminar

Went to a seminar on social and emotional experiences of blind and visually impaired adolescents and young adults today. I was a participant in the research project in 2004 so was invited to the seminar. The results, as I’d already expected, were pretty positive: in most areas, blind and visually impaired adolescents and young adults do as well as sighted people. The only things that were abnormal were that blind people’s social network is usually smaller than that of sighted folks but not qualitatively impaired, that blind folks have more friends who are older than them and that they want more contact with non-disabled age peers, and that their general idea about their social competence is more negative than that of sighted people. Generally, we’re supposed to be as well-adjusted, happy etc. as sighted people our age. Well, I was worse than average in everything, but I already knew that.

After the results were presented, one participant shared his life experience. The only thing I remember is that he wanted to be a journalist but both colleges (Utrecht and Zwolle) refused to accommodate him, so I guess I’ll hope that the thirteen year age difference between us (he’s 33) makes all the difference if I decide to study that. Oh yeah, and he did make lots of statements about how you had to have everything clear about what you wanted etc. etc., and I was like: sure, if it isn’t going to mean I’m going to let myself be held back.

Leonie, a girl who used to be a training home client, did a talk about rehab and about her life in general. Overall, she was pretty negative about how training home had supposedly tried to hold her back by saying she should be in sheltered housing for people with intellectual impairments or acquired brain damage (she has a brain injury). Is the fact that I don’t seem to be noticing this now, a sake of my having given up normalcy after I noticed that I wasn’t holding on? I do think, in part, yes, because I used to be far more negative about training home than I am now. This is, however, a mutual process: I dropped the belief that I want to be doing completely without any form of assistance in living or school (I could do it like I did in high school, but refuse to go back to that time cause of what it took from me) and the staff have realized that I can really learn, in both the practical and the intellectual sense. I remember Renee sending me a newsletter from Sonneheerdt in maybe April. Now I must explain that Sonneheerdt is a vocational college for the blind which is really not suited for me cause its education is far too practical and not intellectually challenging. Obviously, I should be far away from that. Renee knows now and is more focused, at this moment, on my going to college than I am myself. This might change, of course – Leonie said that they wanted her to become a receptionist indeed, while now she’s in college doing Cultural Social Work -, and that’s exactly why I have to educate myself about the realities of “realism”: my situation is not determined by labels or irrelevant details, but by experience, but it’s labels and (irrelevant) details that can give an indication for what may or may not work, hence making it possible to refrain from having to re-invent the wheel time and time again. In other words, while it’s my personal experience and determination and opinions that determine whether I actually need this or that help or whether I can do this or that thing, knowing certain things about myself (not necessarily medical stuff, but medical labels are the most noticeable) allows me to indicate how this help, should I need it, should be organized or how I might or might not do something. To give an analogy, suppose I were depressed, cause it’s easy to explain. The shrink who diagnosed me might recommend cognitive-behavioural therapy and anti-depressant meds, but it would always be up to me to decide whether I thought I was depressed enough to think I needed therapy or meds. Even in cases of serious mental illness where the patient is a threat to himself or others, the shrink can only have him committed involuntarily and cannot force treatment upon him – and it should remain this way. There are people, of course, who believe that people with a particular diagnosis cannot decide what’s best for them. Usually these are mental illnesses, like in the article I linked to yesterday, but I assume that in the 1950s and 1960s the same assumptions were made about the blind and besides, they’re mostly incorrect about mental health patients, too. That attitude is false and I’m known for disobeying it and it should remain this way even in the vulnerable state of “realism” I’m in now. Both Leonie and the other guy highlighted this and while both of them seem to have a clearer and more consistent image of their situation than I do, it doesn’t take 100% clarity to stand for what you do have clear. Practically, if I don’t know what I am going to major in next year and how I’m going to accomplish this and whether I can do it at all, it’s up to me to get an image of why I don’t know what I want to major in and why I don’t know how to accomplish it and why I don’t know whether I can do it at all and go up to whoever can help me clarify further, like the student counsellor or whomever. Or if I believe I have a problem and hence get a mental health appointment, even if it weren’t my initiative, then it’s up to me to clarify my reasons for going for that freaking questionnaire and the family doctor and the January 16 appointment and, if I need to, get Renee to go with me on Jan. 16 or whatever. This is exactly what Renee and Arda and everyone have been telling me for months, after I quit my determination to an at that moment unrealistic goal and swung all the way to the other end of utter confusion and unclarity. Clarifying that your situation is unclear, doesn’t need to be a paradox, let alone an antithesis, if you know what makes your situation utterly unclear. The problem is still that I have my communicative difficulties (in the sense of “locked up inside” stuff, etc.), that I, by the way, also had when my situation seemed 100% clear, which makes it difficult to get across what I do know.

Some folks from Bartiméus did a presentation and, while they were doing theirs, I wondered why I hadn’t heard of any of their services when training home should’ve known this. Leonie said that since Philadelphia is catering to mentally retarded people, they may not know these things, but I know it’s going on around everywhere. Even our job field orientation cases are full of lack of cooperation – in the most recent, about a dysfunctional family, I was supposed to work out agencies the social worker could direct the family to, and I pretty much took all agencies that are already involved in the family’s support and demanded they cooperate. Besides, in the blindness field, there’s a lot of rivalry between the various agencies that’s only going to become worse with more commercialism in healthcare.

After the seminar, I talked some with the woman who interviewed me for the project. I also met the mother of a former classmate in elementary school. She asked all about what I was doing and how I’d gotten there, but I still don’t know how this boy, Arjen, came out. I’d really like to know, but there was no time for me to ask.

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“Realism” Meets Critical Psychiatry

Today, I read this article from a very critical former mental health patient. I’ve always had strong opinions on this and am still an active advocate for the rights of people with psychiatric and developmental differences, so it shouldn’t be surprising, in this light, that I cannot do much but agree with this so-called “bad patient”. However, it isn’t that obvious anymore, of course: what in the world do I do in the same mental health system that I’m so critical of? In other words, where do “realism” and activism go together?

There is one logic in which “realism” and activism wouldn’t go together, and this is the idea where whatever labels I might or might not need intrinsically define my abilities or difficulties. An example of this logic would be keeping out of something I wanted cause “someone with my disorder shouldn’t be doing that”. This kind of logic was, initially, at the core of my reducing the number of possible college majors from seven to two on November 26 – cause of course I can’t deny that being labelled autistic by Renee influenced my perception of my situation during that week-end -, but I later confirmed my label-based “realism” with experience-based “realism” after the discussion with Elma, Dannie and Arda and my classmates. I now think I made the right decision when I threw these five programmes out of my list, not because of labels – I’ve ceased to care about specific paradigms – but because of the reality of my situation at school. There’s nothing wrong with that: I strongly disagree with the idea that “realism” has no part in the college thingy.

Still, in a way, label-based “realism” (type four in the review of approaches) is not a reliable type of “realism” – and it’s something I’ll constantly have to remind myself of as I develop my image of my situation. This is not even grounded in the fact that Renee, for example, doesn’t even know what she’s talking about when she refers to ASDs, but simply in the fact that who is crazy and who isn’t, and what particular types of craziness imply for a person’s abilities or difficulties, is a pretty arbitrary topic. The white coats who created the DSM-IV did a fabulous job of categorizing people according to different behavioural and psychological characteristics and researching and thereby finding strategies and treatment approaches that would help troubled people in a particular category to improve their lives, but that is not saying that the categorization itself has any intrinsic value. A person, put simply, is far more than a set of labels – and if a person were only that set of labels, I could even cease to look for any others, cause I have enough to blame my behaviour on.

Yet does that mean that the DSM-IV is intrinsically an invalid way of categorizing people that only aims to “make us crazy”? No. The DSM-IV is one way of categorizing troubled individuals (cause almost all disorders require significant impairment in social/occupational functioning as a diagnostic criterion), and a particularly well-researched way of categorizing, in that the strategies and approaches that work for people who share certain symptoms and, by this fact, are given a particular label, are scientifically researched. I am highly skeptical of the idea that mental healthcare professionals decide who’s crazy and who isn’t, cause they, in essence, can diagnose everyone, but I do feel that the DSM-IV serves as a useful reference in working out possible strategies for people who experience serious distress due to the symptoms characteristic of their specific mental state (disorder, if you want). To give you an analogy, suppose that I wasn’t able to be put into any category in the DSM-IV, or only meaningless categories that didn’t help me in any way to understand or work on my behavioural/communicative/social problems, and I was hence given an official “no idea” status. Now suppose that a psychiatrist were to see me – and just for fun let us call him Jansen cause that’s a common Dutch name – and found my case so interesting that he wanted to do a case study on me. He collected every little detail from all the reports that have been written about my behavioural/social/communicative functioning by now or by whatever time the shrink were to see me and everything I told him about my experiences and put them together into a fabulous article for a referenced APA journal. Surprise: his case study is published. After this initial article, lots of shrinsk from all over the world write in to report similar cases and, within a couple of years, Jansen’s Disorder is added to whatever edition of the DSM we would be having by then. Research is started on educational, treatment and supportive strategies of helping Jansen’s Disorder patients and they finally find some strategies that work or define some support that these patients need in order to have as meaningful lives as possible. Now, even if I were the first to be diagnosed with this disorder (cause, after all, I were the initial patient), extensive research on supportive and treatment approaches would not have been started by then. Would the diagnosis have any meaning for me, then? Obviously not. All it would do is to stigmatize me while giving me no guidelines on how to live in the world or what kind of help I would need.

At what point does the fact that, with a label, you have access to resources and strategies that may work for you – cause even for psychiatric disorders with really poor prognoses, supportive strategies exist – outweigh the stigmatizing that is inherent in the label of mental impairment? Sigrid, of course, was right when, on November 29, she cautioned me against seeking labels cause I would be discriminated against on their basis if I wanted a job. This is about labels, not problems: as soon as I were diagnosed with that hypothetical Jansen’s Disorder, I would be discriminated against in ways I wouldn’t be without the label but with the same problems in behavioural/social/communicative functioning. What I told Sigrid, however, is very essential: at this moment, I experience significant impairments in functioning due to my communicative/behavioural/social characteristics, to the point where I get stuck. In essence, it doesn’t matter that I would be discriminated against on the basis of a psychiatric label, if I ain’t competent to work anyway. To my mother I clarified on Wednesday that, besides “just holding on”, it would be easy for me to totally give up and sit on my ass for the rest of my life. The thing is, if I fit some category, I know there should be strategies that may work for me and that will make this situation a lot less polarized. Someone doesn’t develop symptoms cause they have a certain diagnosis; they get a certain diagnosis cause they have symptoms.

All of this is grounded in the belief, of course, that there *is* something meaningful to say about my situation. If I were convinced there weren’t, all I could do is to wait for that hypotetical Dr. Jansen to do his case study on me and, by the time sufficient research had been done into strategies that work for my symptoms, I might’ve decided they aren’t going to help me anymore anyway. Honestly, yes, I dread an official “no idea” status (and yes, these people do exist even in a profession that can label everyone they want) cause, in essence, it’d say that I’m crazy but no-one has a clue how I might work with it, and this might even become a building block of stigmatizing and psychiatric disempowerment with time and unethical shrinks (not assuming anyone’s unethical, but still). Then malingering is a lot better a label even if I disagree with it. That’s why I said my mother might even be right with her paradigms – they’re paradigms, and they even have solutions even if I don’t understand them and can’t work with them. I’m not looking to be labelled just for the sake of it – and everyone who is, should essentially not be labelled at all -, but cause I have a problem that is causing me significant distress.

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