Astrid’s Journal

I am currently reading a Dutch book on visual impairments. Some of the essays are about sociological and psychological aspects of blindness. Nothing I didn’t know yet, but some of it confronts me with my own situation and my attitudes toward it, either formerly or currently. For instance, two essays are about partial vision. I’ve not considered myself partially sighted since 1999, but some of the feelings described by the author used to make a lot of sense quite recently - like in late 2004 -, and some of it still does.

The fact that, in 2004, I didn’t lose skills when I lost my vision, obscured my mind to my actual reliance on vision in particularly mobility. It wasn’t about a loss of skills this time, as opposed to in 1998, it was about a loss of appreciation. I still appreciate my little bit of vision and I don’t think that, in and of itself, is a problem. People have sometimes wanted to criticize me for it, but I respectfully disagree: I still see the way I see and I don’t see the way I don’t see and I can’t change it anyway.

Using vision is something else. It’s something I was particularly confused about in the last couple of weeks at rehab, before which I’d never known that I actually functioned pretty visually. In fact, I remember having told people in the evals week in June that I functioned non-visually anyway. Well, I didn’t, and realizing that brought new feelings with it. Partly I am able to make conscious stretegies out of the ways I use my vision, but in some situations this also confronts me with my using vision when, in fact, it isn’t efficient. Of course I’ve tried using sleepshades more than once - especially since my most recent vision loss -, but I never thought of reflecting critically about the way I functioned in daily life. It made me damn aware of the position I hold: that the statement that I’m blind cause I function non-visually, isn’t correct. Maybe it should be, but in any case it isn’t.

The clinging to vision is very apparent in one essay, even when the woman had only a little bit left. And one of my Dutch acquaintances, who has never had any more than light perception, write son his webpage about the advantages of having light perception, to which I, of course, agree.

All this recent having become aware of my vision (and the lack thereof) and the implications that has, sometimes feels rather strange. I decided not to let my parents read the report from rehab for this very reason: it was highlighted that so much, while they think that firstly I stopped caring about vision in 1999 and secondly, if I didn’t, I should’ve learnt to stop caring at rehab. But being realistic and preparing oneself for further vision loss can never be the same as feeling comfortable with further changes in vision. I agree for so far as I have to reflect critically on my mobility strategies and other ways of using my vision and that I should learn to function non-visually, but one can never be fully prepared for further vision loss. That’s also what the partially sighted woman in one essay highlights: she had 20/200 vision at best and lost her vision very slowly, but had to adjust each time she lost more sight. More than anything have the happenings of 2004 reminded me of this fact, and it’s something most people at rehab agreed with.

Another interesting note, made in the essay, was that the woman, who eventually went totally blind, didn’t know when she’d lost all of her vision, cause what she could see was often complemented by imagination. It’s the same for me, and that makes being realistic all the more difficult: with just the right lighting, I can see someone’s face if they’re sitting very near me as a light area, but I also know where a face is generally located and what a face looks like. Also, when I concentrate on someone, I can see more what they’re doing than when I don’t concentrate, and, while usually trying to direct my face to the other person, I never concentrate that much - I’ve noticed I usually do when I get “locked up inside” and want to face the other person to make clear that at least I’m still “connected”. In this way, it’s hard to say when one’s lost vision or how much one actually sees and hence, being realistic is more difficult.

Paradigms about my lack of social contact and its underlying causes are, in a way, paradigms on three levels, all of which have shifted in time and vary depending on whom you were to ask:

1. Paradigms about the nature or form of my deficits in social interaction;
2. Paradigms about what behavioural, social, emotional or psychological processes are causing me to have these deficits;
3. How I came to have these traits (eg. a developmental disorder, normal consequence of blindness, etc.).

On the first level, my and others’ views have been mostly consistent both in time and according to various people: for about three years, I’ve been readily admitting that I have a doorknob’s social skills (though I founded the exact statement on my admission interview for the training home). I first heard of social skills, at least where my own situation was concerned, in October of 2002, when my tutor came up with the dreaded list of sixteen statements about social behaviour. The list came from a book on social skills and visually impaired students and I hence concluded this was *not* a strength of mine based on several really blind-related statements that I don’t consider related to social skills now: asking for assistance, explaining blindness, etc. They are part of the scope of social skills, of course, but they’re only partly skills deficits and for so far as they are skills deficits, I settled them at rehab. Back in 2002/2003, by the way, they weren’t considered real skills deficits at all - they were considered performance deficits, though I wouldn’t know if my tutor knows the difference.

Besides these, there were the skills deficits that are mostly considered blind-related, like facing the other person when you speak to them and taking care of one’s appearance. According to Jan’s (the special ed folk) report of May, 2005, I improved in these areas, and I think so as well: I wouldn’t really know the appearance thing (I perform normal personal hygiene now, something I didn’t use to back in like 2001 but wouldn’t know of the years in between), but the facing people thing is something I don’t often forget anymore, and when I don’t do it, it’s more often when I get “locked up inside”, which in this situation I consider part of that issue - an opinion not shared by my tutor back then, by the way.

As for skills that were not really blind-related, they were not often addressed. I remember once having had a very difficult discussion with my tutor on taking the other person’s point of view, in January of 2003, but the discussion didn’t get me anywhere and only led me to say that I would think better about my behaviour. Further, I guess some of the statements were discussed briefly when having given the teachers the list to fill out, but they weren’t highlighted too much.

My social skills and communication difficulties were my tutor’s paradigm as to what was troubling me in 2005. I don’t remember the exact description of them, given by him on January 11 - which was when we were discussing calling rehab -, but there was an unusual focus on social contact with peers, a focus we’d never had ever since the eigth grade and that I didn’t have in my considerations for college, either. Not having any friends, for me, was at the time a matter of fact caused by my “doorknobv’s social skills” and nothing else. As a side note, Arda asked me on Friday if I’d said this thing about the doorknob’s social skills to sort of explain my behaviour, as in the idea that now they at least know that I have this behaviour cause I have a doorknob’s social skills anyway. It even, to me, connotes not having to change, which I of course don’t think.

The other part of social skills, ie. that of getting where I wanted to as far as college is concerned, was really underemphasized in March, 2005. What I mean, is my having to ask the student counsellor for accommodations, having to explain blindness to professors, etc. That (the lack of having done that) was actually what made me decide to delay college a year. I know realize that it’s much broader - if it weren’t, the fact that I’d now called the student counsellor and she’s going to make an appointment with the director of studies, means that I’m completely ready for college -, but at the time it was the only real argument I had, cause there was the general belief that all of my skills deficits would disappear magically once I was in college.

In August of 2005, when having a discussion with Monika about my possibly doing communication training, I considered my communication skills to be horrible and highlighted my being scared that the training would be difficult. It was less of a difficulty than I’d expected, and I was noticing that I was not the only one who was finding some things didfficult, even though I still feel that the other participants had more constructive comments to offer me than I had anyone, but well, it’s only a good thing that one can learn from these things.

Throughout all of these years, an actual connection between my having no friends and my poor social skills was actually lacking except when I was asked about it. When someone asked me about friendships or contact with peers, I’d say I didn’t really have that much social contact with peers and explain it by saying I had poor social skills. After all, I did and I had little contact with peers. But for some reason, I never made the connection between most of the statements on the social skills list and my contact with peers. The ones that were discussed have no connection except to make a not-too-bad impression. For example, the thing about asking for assistance is connected, in that not only don’t I easily ask for assistance, but I’m going to “hint” about my wishes, which is oftentimes annoying peers (and people in general). It is about coming across nice to one’s peers, which eases social contact, and how I actually act when making or keeping contact with people, was never considered.

That is being signified now, and it’s being signified in making comments that disconnect poor social skills from a lack of social contact. Mar commented about my possibly having no peer contact cause I’m not going to make it cause I think that people aren’t going to like me anyway. I’ve never liked these statements, cause they often seem to deny my willingness to get in touch with peers and they also seem to minimize other factors contributing to this situation. That is about a situation I was in in for example seventh grade, when my classmates, whom I wanted to befriend, were at once my helpers, a position that seems to be impossible unless you’re speaking about a friend doing something for you every now and then - and you doing something in return. I didn’t have the skills to handle my position of 1999/2000 appropriately, to the point of exploiting the helper and not trying to be the friend.

But that was seventh grade. My position at the school for the blind (particularly Bartiméus) was different, cause my peers did not have the dual role they had in high school, and yet I didn’t have much social contact either. The paradigms about that were diverse, and usually seemingly contradictory: my parents thought it wasn’t really a problem of mine except that it was about my being highly intelligent, while the school people thought it was a problem of mine, that they by the way never defined clearly. I reacted poorly to teasing in the sixth grade, sure, but that was not the reason I was being teased I suppose, and it was most certainly not why I had no friends in the fourth or fifth grade.

I mentioned the “locked up inside” issue before. It is considered something related to social/communicative skills by most people. At least, my tutor considered it to be a skills deficit of mine and listed it under the heading of social skills when he thought I’d improved in it - which I hadn’t, he only had stopped asking me the questions he wouldn’t get a response to anyway. I never liked that connection, cause to me it was obvious that it wasn’t a skills deficit - it was at least a performance deficit and actually something more complex. By the way, once again I don’t suppose my tutor realized the difference between skilsl deficits and performance deficits, cause the way he treated it to me was simply as if it were a performance deficit.

Likewise, the people at training home and at rehab connected the two, but in a different sense: they seemed to see the issue as more of a difficulty of mine than my social skills deficits. To an extent, social skills deficits were considered to exist alongside the issue by people at rehab, but Renee’s paradigm - that I find hard to understand anyway - seems to see the different deficits as various ways of doing the same, as in knowing what to do but just not doing it. I find it hard to agree with if it’s reducing all of it to a simple performance deficit, while some of my deficits are skills deficits and some of them may be performance deficits, but just won’t go away by demanding that they do. Oh well, isn’t that true? When on Friday Arda kept asking me to respond, I eventually did, and the same goes for last week Tuesday, but in neither case it was to the question being asked and in both situations, I felt really… well, I don’t know what that it called.

At the next level, there’s the issue of what gets me to have the social skills or communicative difficulties that (people think) I have. Ever since late 2002, I’ve had the paradigm of not understanding situations, which however I begin to see now isn’t the only thing. In some situations, I do get “lost” in the details of the situation, but in many cases it’s indeed a form of performance deficit, sometimes combined with a skills deficit in that I’ve never done the stated thing, and sometimes I feel kept from doing the stated thing. It’s all seeming to be interconnected, and that, in a way, connects the “locked up inside” isssue and the social skills thing in another way than assuming all has to do with my getting “locked up inside”.

Even in this situation, when initially the deficits may’ve been caused by my not doing something, for any reason - that I assumed I wouldn’t be able to make contact anyway, that I felt “kept from” doing the thing, etc. -, a real skills deficit could’ve developed in time. Cause the fact that when you don’t use a skill, you lose it, applies to socialization just as much as it does to any other skill. Plus, if I had the skills to interact with younger children cause I was myself younger - I don’t know if I did, but assuming I did -, that wouldn’t mean I have the skills to interact with young adults. It is the same as why some children who are shy, may have developed social skills deficits over time, not presuming that I’m shy - I don’t consider myself to be -, but you know what I mean.

On the same level, there are the assumptions about the “locked up inside” issue, or you might assume this to be an intermediate level. I’ve come to understand the issue somewhat better recently, in what happens to me when I get like this. It goes somewhat further than to say “I just feel kept from interacting and so I don’t interact, causing me to be isolated,” yet it is more prone to differing paradigms and controversies, if paradigms are of a nature that I consider not to be considerate, which is about any psychological nature - while virtually everyone, including myself, thinks it’s like that.

Even more controversial is the third level of paradigms, cause there are so many varieties that seem to consider totally different factors to be of influence. In this respect, I will truly have to differentiate between paradigms that are developmental in nature and paradigms that are psychological.

Developmental paradigms include, obviously, the assumption that I have an Autistic Spectrum Disorder, made by my parents every now and then but apparently not meant seriously, cause when I got to believe them, I was supposed to be a hypochondriac. As you know, I myself held that paradigm for twenty-two months in late 2002, 2003 and early 2004. And I still recognize some characteristics of mild forms of Autism, but many of these overlap with characteristics of highly intelligent people (ie. asynchronous development) and characteristics of blind people (ie. an inability to observe others’ behaviour) and some of them may even have been caused by just “not practising”, cause many children and teens with any type of mental health issue have (secondary) social skills deficits.

There is also, as I mentioned above, the issue of blindness and high intelligence and how each of these may contribute to the development of poor social interaction. In the developmental sense, I mean all those deficits that develop as a result of a blind or highly intelligent person’s characteristics that can, with reasonable consideration, be attributed directly to these qualities. For example, the fact that a blind person cannot observe other people visually, is among these factors. It’s why there’s a higher incidence of social skills deficits among congenitally blind people than among the general population, and it’s why social skills are often highlighted by educators of the visually impaired. Social skills wouldn’t need to be highlighted by educators of wheelchair-using children, at least not based solely on the assumption that being mobility impaired impacts social development directly. A lack of interaction, caused by a person’s inability to move as freely as a non-disabled person, may be addressed, but there’s no inherent developmental risk of social skills problems in solely being mobility impaired.

That is not to say that no secondary deficits may develop, but I consider these to be psychological or sociological, ie. resulting from the position the disabled person has in his social environment and the way he or she copes with it. If a person is teased cause she is in a wheelchair, she may withdraw socially and this may lead to isolation, which in turn leads to a lack of “practice” and the development of a real social skills deficit. However, the isolation, then, primarily has psychological and sociological causes that need to be addressed, along with, if it’s developed, the secondary lack of social skills. And there’s no reason why this couldn’t be the case for blind children (or, for that matter, adults) just as well. In Self-Esteem and Adjusting with Blindness most examples of poor social interaction are based on this belief: many blind people described were teased or rejected by peers.

I also, of course, consider the paradigm of difficulty coping with blindness to be part of this. The paradigm is not too prevalent these days, though that is mostly cause I actively try to defeat it. Not cause I don’t believe it could’ve been this way - I hardly remember 1993, but for so far as I do, I remember it as a rather difficult time for me, and my memories of social interaction would also support the idea that my problems started to occur sometime between 1993 and 1995 -, but cause I just can’t imagine that such problems can have such an impact. Well, it’s incorrect of course, if I’m honest about the development of my attitudes - that I was pretty much troubled all of the time -, but it having any direct impact, makes no sense to me.

It does make sense that bad feelings about being blind contributed to poor behaviour regarding assistance, for instance, which in turn led me to be unfavoured by classmates, who, as I stated, were my helpers before they’d ever been able to make it to friends, but that’s speaking of the years 1999 and 2000, not 1995 or so.

Of course there are other beliefs about my having been rather unhappy in my situation in the 1990s, like academic problems due to serious underachievement. That remains another of my mother’s paradigms, but not one my memory (which is seriously lacking about that time period) supports and, most notably, not something I can believe from a psychological standpoint. Such a deep, psychological theory just feels too “excuse-seeking” to me. But so does any psychological theory in my situation, cause mine wasn’t particularly bad. I mean, I do believe in psychological causes for social, emotional and even behavioural difficulties, but in my situation it’d make no sense, cause I have no “reason” (if rationality is even involved in these processes) to get like this.

There are, likewise, totally different psychological paradigms. The ones about the “locked up inside” issue, presumed by the people at my Russian summer camp in 2000 as well as here (the only two places where people took care to consider the issue seriously), are in a way valid but “feel” uncomfortable. Likewise, I have no “reason” to get like this. It’s like I were Deborah in I Never Promised You a Rose Garden by Hannah Green, whose issues would today not be considered serious enough to cause her problems, that currently would be considered Dissociative Identity Disorder. Maybe she would be diangosed with schizophrenia even today, cause her psychiatrists would not believe that her problems were in fact dissociative in nature, cause she didn’t have anything in her history that would warrant her developing a dissociative disorder - a statement literally made to Sarah, who most certainly dissociates.

Likewise, would my difficulties not be taken seriously if people were to have psychological paradigms, cause nothing in my history was serious enough to cause them? I don’t know, but I would side with them. That’s why my paradigms are mostly developmental in nature: it’s the only way I can take myself seriously. That would not explain the “locked up inside” issue, of course, but maybe it’s just behavioural.

Oh, that’s another type of paradigms: that it’s just the way I want it to be, or that I want to make people’s lives miserable. Sometimes, these are presumed to be due to other factors - going so far as to say that I’m taking revenge for my own existence (why am I a pro-lifer, then?) -, but in either case, it’s assumed to be my choice. And it isn’t, of course, cause if it were, I’d change today. It’s the same with kids with behaviour disorders: it’s truly their choice to behave the way they do - they want to annoy others -, and if they didn’t choose to act defiantly, they could change right away. Behaviour modification does wonders for these kids, but only for kids with true behaviour disorders, and far too often, kids and teens are believed to have behaviour disorders while they don’t. James Sutton makes this clear real well in his article about behaviour modification and ODD: that oppositional and defiant behaviour is often a symptom of something else rather than a disorder in itself. It’s the same for any of my own behavioural problems, in themselves or those contributing to poor social interaction: it’s not mere opposition.

Of course, Sutton does mention something about the child’s “everyday” personality, and this brings me to the question whether my difficulties were always there or were acquired at some point. That is also an important differentiation between developmental and psychological factors: if I’ve always been the way I am, I can easily attribute it to my neurological defects (IVH and subsequent hydro) suffered in the NICU without needing any emotional or behavioural explanation. I could give it a name (like Autism) or I couldn’t, but in any case, my issues would be congenital, and to be treated as such.

My father sometimes thinks my difficulties were congenital, but my mother thinks they’re acquired, and my father says so at times as well. They first became clear in around 1993, but that still wouldn’t say anything: with children with mild developmental disabilities, these often don’t become apparent till school age. But usually even then, a parent could say in retrospect that the child has always had the problem. Like, I know a guy who was diagnosed with Asperger’s Syndrome at age twelve, but whose parents say they noticed his odd behaviour when he was as young as five days of age. That is the difference between acquired and congenital and, in my case, between behavioural or psychological and developmental, cause I did not suffer any developmental regression later in life. It’s still not saying anyting about levels one and two of the deficit, cause a psychological problem may cause skills deficits and a developmental issue may lead to isolation, which in turn may cause mental health difficulties. It only says something about what ultimately lead me to get the deficits I got.

Today, I’ve been surfing the Internet for websites of Dutch disability service agencies, and been thinking about the high rate of what I see as “differentiation” within the field. By this, I mean the rigid definitons of what clients are like and/or, if additional problems or an unusual personality profile are present, a lack of cooperation with other agencies. I am aware that, in order to preserve quality services, no agency can be a specialist on many different conditions and disabilities, but then at least acknowledge the need for services from different professionals and/or agencies.

A few months ago, I read an article in Bartiméus magazine about a woman with a visual impairment and an intellectual disability who was living in a living centre for the intellectually impaired. She was also working in a sheltered shop directed by this agency, but the staff there were unable and unwilling to accommodate for her visual impairment until Bartiméus was contacted by, I believe, the family. Bartiméus was able to perform a functional vision evaluation and advise the other agency on accommodations that would work for the client. I wish agencies would be more cooperative in this sense, acknowledging that if a client has a visual impairment, Bartiméus or another agency serving the visually impaired should be contacted, and if the client has an intellectual disability, an agency serving the mentally retarded should be involved in serving the client. Or, of course, if an agency for visually and intellectually disabled people is able to accommodate the client, this is also a good alternative, but in either case, services shouldn’t be based on a rigid belief of what the client’s abilities and disabilities are like.

In the U.S., at least outside of the educational department (where IDEA seems to accommodate students based on individuality more), it seems to be even worse, and it’s only reinforced by the blind movement, who advocate that agencies serving the blind should be completely separate from agencies serving people with other disabilities. For example, schools serving both the deaf and the blind are thought to be a bad thing, even though they have separate departments for the blind and the deaf. So where and how should a deafblind student be educated, then?

It is of course not of people with one, clearly identifiable disability who fit the profile of an agency serving that disability group perfectly, that I’m speaking here, but of those with more than one (more or less identifiable) disability, or one identifiable disability that requires services yet an atypical profile for the agency. In either of these cases, a student or client may not be adequately served if confined to only one (type of) service based on one’s “primary” disability.

I’ve never liked the concept of a “primary” disability anyway. It is used by the blind movement, in defining people who can perform according to their expectations: those whose primary disability is blindness. Yet there’s not always one identifiable primary disability, or there is one, yet the additional issues or atypical personality or developmental profile cause the person to be more adequately served by an agency serving another group of people. Or maybe even something else, as I suspect happened to me: in 1992, when I was five, I was failing at my regular school. My primary disability, obviously (I think), was a severe visual impairment, yet I was also having some additional issues, like mild physical impairments. And for some reason my parents decided to check out the local school for students with physical impairments for me. I was eventually denied based on the insignificance of my physical disability, but the fact that my parents even checked it out, proves that there’s not so much one type of service agency matching a person with such and such a disability or disabilities. As a side note, the school for the physically impaired made sure we could get a large tricycle for me - cause I was physically unable to ride a bicycle -, while most likely a low vision evaluation would’ve revealed that I was unable to ride it safely. Of course, this wouldn’t impact my riding it for enjoyment purposes only, but I wouldn’t suppose that would be a reason to get the thing.

Years later, of course, we were faced with my behavioural and social-emotional deficits that, by the school for the blind, were dismissed as being a lack of intelligence and discipline. As a result, I was advised to attend a low level high school and become a boarding student at Bartiméus.
Yet I got admitted to Sensis after sixth grade and, one year later, to a regular high school based on my academic level with necessary accommodations for blindness. I’m not going to discuss the issue of my behaviour/social/emotional issues now, since I’ll need to do that in a separate entry anyway.

Currently I’m once again being served by an agency whose current primary focus is not people with visual impairments, in that most clients have an intellectual disability or acquired brain injury. When writing about the training home here, I often feel ashamed to mention that, cause the blind movement condemns the idea that people whose primary disability is blindness (which I’m most likely considered) are being served by agencies not specializing in the blind. Now of course here, I could mention that the training home does specialize in the blind, in a way, in that it used to be its entire client group. And I feel that the people here are still quite capable of teaching me the things I need/want to learn and also have a good record where cooperation with other agencies is considered: for example, Arda is planning on contacting the rehab centre to see if Ellen (the occupational therapist) can teach me some things once again. In this way, the training home is able to serve a diverse group of clients - one in a wheelchair, several with intellectual impairments or brain damage and one blind person -, without pretending to be a “one size fits all” agency. I once suspected them of being like that, but it doesn’t appear to be that way. Of course, they’re still serving clients they (used to) specialize in - the organisation directing this project primarily focuses on the intellectually impaired and this project used to focus on the blind -, and I contend that it’s a good thing that they do (even though they seem to be doing well with the wheelchair-using guy as well), but they seem to be the least paradigmatic organisation I’ve ever come into contact with, including the rehab centre (but that may be partly due to my own blidn-focused paradigm).

I of course partly attribute that to the fact that the most common mistake being made - that I’m unintelligent - cannot be made anymore cause I have too high an education for that, but at least the assertation, made by my mother, that an agency serving intellectually disabled people cannot, by definition, serve me, is incorrect. It was based on the experiences with Bartiméus, but I contend that it wasn’t their lack of experience with intelligent people (an experience this training home does by the way have), but their extreme rigidity as to what a client being served by them is like, so what got me started with this article.

I had a very difficult discussion with Arda this afternoon. It was meant to be a discussion according to the plan for having discussions, which I, by the way, never even had a discussion according to - I’m definitely planning on doing so next week. This time also didn’t get to be a discussion according to the plan. It ended up being a meta-discussion once again. It started out with Arda asking me whether I’d prepared for the discussion. I hadn’t. So what did I want to talk about? I didn’t know. Then we got to speak about the piece of writing I’d done yesterday about what I’d learnt so far at the training home. For some reason I got completely “locked up inside” and couldn’t respond to the simplest questions afterwards, but could make comments in between, like that my laundry was still in the laundry room, and I could even ask Karin some question about her brother’s chess contest - while asking about the other person is presumed to be a difficulty of mine. It didn’t feel “natural” at all and was really kind of difficult. It did not correspond to my former belief that, when I got “locked up inside”, I could get out of it as easily as I’d gotten into the state by simply having an easier discussion topic. But neither did the course of some other discussions, like the one with Renee on the route to the supermarket last week Thursday. But I could make the statements now, at least.

Eventually, we got to speak about the “locked up inside” stuff once again. Some of the (correct) statements made by Arda resembled those made by another staff folk last week Tuesday and those made in the rehab report by the trainer form assertiveness - and which she also made during our training, when we got to discuss the issue. And some were rather weird. Like, she seemed not to be so convinced that I truly had a doorknob’s social skills (ie. none), as I stated I did during the admission interview and have acknowledged many times since. She got to tell me that yesterday, when we were having breakfast, we were having a pretty normal discussion and she’d noticed it on other occasions. So have I. She got into some statements about the scheduled discussions not going that well and it having to do with something that I was more “forced” to converse then. I was like, well, if it were that simple, it made no sense to even talk of social skills cause nowhere but here will I have discussions like these. But of course it isn’t that simple, and Arda understands. Cause firstly there are of course also the “rules” put on the plan, that I’m obviously not too good at, and secondly, even if they weren’t there, I might experience getting “locked up inside”. And it wasn’t here that I first was confronted with either of these: it was in the tenth grade, three years ago.

What particularly confused me were the positive comments Arda made about some of my social behaviour, like when this afternoon I remembered that Arda would be coming at 1:00 PM and hence decided to make coffee - besides myself (sometimes), she’s the only one who drinks coffee -, or the fact that yesterday I remembered that Arda wanted to pray before the lunch, while none of the other people on the table pray, and hence my asking if we should be silent. I don’t usually like these compliments - similar to Mar’s (a staff member) complimenting me on having asked her how she was, which I forget nine out of ten times -, while I don’t feel I’m rather forgetful about these kinds of things. I would even consider it an alternate way of being sociable. Oh man, that sounds as if I act this way to compensate for my otherwise poor social skills, and it isn’t that way, but well… this is rather strange. Maybe, to me, it just connotes a feeling of: “Wow, you finally show that you *can* be considerate of others!” as if I’d never do that otherwise, but wouldn’t know (and wouldn’t hope) that this is the correct interpretation.

Speaking of interpretations, Arda made some comment about that as well. About my quickly filling in for others what they might think. I pretty often do that, and I often realized that the “locked up inside” stuff had something to do with it - in that I wouldn’t want to say something another person might not like me saying -, but for a long while I’ve noticed that I get like this even when wanting to make a comment the other person most likely wouldn’t object to, or that the other person may even expect receiving. In some cases the “that statement is not fair/considerate/whatever” “reasoning” (between quotation marks cause there’s nothing rational about this whole issue anyway) is still very prominent, but sometimes it’s hardly there or I don’t even think it’s there. Like this afternoon and last week Tuesday - when my reasons for feeling a reluctance to say whatever I wanted to were even less comprehensible (at least not when we started the discussion, which was just about what I was doing this year) and my state of mind (no idea what to call the state I’m in, not “locked up inside” cause I mean the emotional kind of state) was even worse.

Fortunately, Arda realized that I wanted to respond to her questions. It doesn’t make the situation easier, but it certainly doesn’t make things easier if I get folks to think I just want to be curt - which I well realize is the general impression I’m making, and not wanting to make.

I just received the report about my rehab. The things that are very noticeable, in places that I expected but that I still need to write about, are the comments on my residual vision and its relevance and/or significance. In some way, the conclusions drawn by the mobility instructor and the ones drawn by Kira, contradict each other, but that is self-explanatory: I simply didn’t know that I was using my vision as much as I did, and hence I didn’t tell Kira, while the mobility instructor readily noticed it - and so did Kira, eventually, of course. I remember one of my last discussions with Kira. She made a comment about something lying on the table and immediately, I visually scanned it. It was something I hadn’t realized, cause I’d been convinced for over six years that I was blind anyway, and, as a result, had been convinced that I functioned entirely non-visually. At one point, I even thought that I might make a habit out of functioning visually by having people, like the mobility instructor, highlight it. Well, the habit had long existed, and the only thing that changed during mobility class, was that I made a conscious strategy out of it. I’ve never denied that, before 1999, I functioned very visually, even too visually. But after I’d said to myself that I was blind, and had hence decided no change in vision would matter to me from then on, I had the illusion that I also functioned accordingly. Not only was my decision to accept any subsequent change in vision, based on incorrect beliefs - that no change in vision would mean a change in needed adaptive behaviour, cause I functioned non-visually anyway -, but just cause you decide to accept something, doesn’t mean you’re going to behave accordingly. Besides, this is a circular argument. Man, isn’t it astonishing that I could be reasonably adjusted to my blindness for five years based on a circular argument?

But even if it weren’t a circular argument, it wouldn’t be valid, for it wasn’t that I didn’t function non-visually, that caused the major problems when I lost vision in early 2004. And both Kira and Ellen (the CPH folk) reecognized the significance light sensitivity held in my reasons for having to mention my residual sight. It was the only part of my change in vision, that I was still truly troubled with upon starting rehab last August: the fact that, for I functioned non-visually - and so I thought, and indeed I didn’t experience a decline in functioning after my visual loss -, I thought I’d accepted any further change in vision - and, further yet, I didn’t need to learn any new adaptive behaviours beyond those meant for extra independence training, and I most certainly wouldn’t need to alter my explanation to others, or it would be to signify my little bit of vision that I, thank God, retained, which is an obvious sign of poor adjustment -, and the realization that it wasn’t true, cause not only did I hate light sensitivity as such, as it was distracting, uncomfortable and sometimes even painful, but it required both new adaptive behaviour - I would have to buy sunglasses - and an alteration in what I told others - in that, for example, I would have to ask
them to turn off some lights or to let me sit with my back toward the light source. Before, saying I had residual vision only served to show people that for heaven’s sake, I wasn’t (totally) blind. What did you say, accepted? It wasn’t till early 2005, when my nengative feelings about my last decrease in vision started to fade, that I first told someone I had no sight at all. It was for pragmatic reasons, the same reasons that had prompted me much earlier to refer to myself as “blind” even though I didn’t view myself as such. And no, I didn’t view myself as blind. The question resounds in my head: whether I saw myself as blind, even though I had light perception, or as partially sighted? In general, I would never think of viewing myself as partially sighted, and I cannot even imagine that I, emotionally, liked that term. I probably felt I was nearly blind, but no-one should ever forget that I had some vision that I did use and, most of all, appreciate. It was the thing I kept highlighting over and over again in the summer of 2004, before I’d realized that I actually relied on my vision in mobility situations: appreciation. That was the emotional side of it all, that I feel I only made worse by denying it - in that I wouldn’t admit to myself, till sometime in 2004, that I appreciated seeing, which only worsened my emotional turmoil of the summer of 2004. I mentioned that before, when I discussed my newly-found realism in approaching my vision or the lack thereof: my realization that it was possible for me to see the way I saw, and to not see the way I didn’t see - that one came weeks later -, gave me a sense of peace of mind.

Still, I have to admit to having been unable, for all these eighteen weeks, to be truly realistic. Both pragmatism - I’m not allowed to say I have some sight, cause it equals poor adjustent - and emotionalism - I want to say that I have some vision, cause I feel it’s important to me -, coloured my viewpoint. I think it does have some relation to the fact that I was around all other blind and visually impaired people all of the time, where the details of one’s blindness, in the broadest sense of the word, matter much more than they do without other visually impaired people around. The most noticeable way in which my reliance on vision was present - and this was also noted by the mobility instructor - was on my travels. I don’t consider it to be wrong that I rely on vision for some information about my environment, like I did before starting rehab, but I feel that in some situations it’s just inefficient. Of course, both I and the mobility instructor realized this when I was at rehab - well, he realized it more than I did, when he commented, in one of the last weeks, that cause I was focusing so much on my vision, I forgot to concentrate on my cane -, but I didn’t really alter my behaviour. I don’t know how much the fact that there are no other visually impaired people aroudn, contributes to this, but currently I feel more open to try alternate, non-visual techniques than I felt then.

Pragmatism is something else. I’ve realized that I cannot fully prepare myself for total blindness, or any form of visual change, by simply saying I’m totally blind, and, hence, the pragmatism has lost the “moralizing” function it had. Besides, I truly didn’t need it anymore. I already realized this at rehab, but it didn’t get much practical application till after rehab. Just this evening a Socialist Party person visited me. I never use a cane in my house, but the guy still noticed that I had a visual impairment. “Are you partially sighted?” he asked. “Blind,” I corrected. Then he asked if I had no vision at all. “I see dark and light,” I said. With neither of my remarks, I felt that there was a particular philosophical or psychological principle underlying it. The correction that I am blind had an advantage it’s always had: that the guy wouldn’t overestimate my vision. But even without the correction, I could’ve told the person that I used braille or some other alternative technique, should it become relevant - for example, when I would be expected to read some SP material -, cause I know enough people claiming to be partially sighted yet using the exact same alternative techniques I use. But the remark that I could see dark and light had absolutely no relevance at all. It was just that the guy asked me if I had no sight at all, and so I replied truthfully.

That all isn’t to say my difficulties are over, but I didn’t expect them to be. I’ll still feel strange when someone calls me “partially sighted”, cause I feel I don’t “deserve” the term and should’ve been better at highlighting my actual blindness. I will still feel bad when having to explain my light sensitivity, cause it feels “weird” that a blind person can still be sensitive to light. But I’m getting better, and, besides, I’m getting more realistic.

Realism is not some fact sheet of my vision and the lack thereof, as I presumed it to be in early November. It is being truthful about what I can and cannot see, what techniques are and aren’t efficient or preferrable, and what consequences my vision impairment does and doesn’t have. It is both broader and deeper than “my vision and the lack thereof explained”. I realized this when still at rehab, but it’s all easier to practise to people who all know what it’s like to be visually impaired or blind, than it is to those who don’t.

Arda made an interesting comment this morning. I have an officially scheduled discussion with her tomorrow afternoon, which I dread cause I dread all my officially scheduled discussions, never mind how informal they are - they’ll always go wrong anyway. She said that when we’re conversing during breakfast, for instance, I’m doing pretty well. And she’s right. It’s not something I hadn’t realized before, but still it remains something I find difficult to understand. Part of it, I guess, has to do with the fact that we’re sitting on that table anyway and there’s no need to officially initiate anything, while this is true of most conversations, even informal ones: when you’re not “forced” by circumstances to be together, there’s no “natural” incentive to converse, and this is still happening in most situations, cause even though most often circumstances make one be around other people, that is not the same as circumstances making it logical to have a discussion. Like on Friday afternoon I was around people all of the two hours the meeting lasted, but there was no reason to chat except when you met someone and asked them something along the lines of: “How are you doing and how are your studies going?” and they’d reply and walk away to chat with someone else. Or I’d go up to some people, say “Hi” - I obviously wouldn’t need to intro myself as they all know me - and sit with them but still not really participate in the conversation. In those cases, I often feel, when making a contribution, that it isn’t worth saying anyway. But that’s with former classmates, and obviously I’m not going to get a better relationship with them than I ever had while in high school, which always was along the lines of an obligatory interest in me from their side and an interest in them from mine that was too stupid to be appreciated, cause obviously everyone already knew all the things I was asking them about out of real interest, cause they’d long told all their friends. With people here, like other clients, it is in some way the same when I first came here: I didn’t know what type of job one client had and that another client participated in basketball, cause, after all, I’d never met them before. The difference is that it’s less obviously a sign of being an outsider, when you ask these questions upon first meeting them, cause obviously you can’t know these things. It isn’t any less of a barrier to normal conversation than last Friday’s conversations were. Is that something of reciprocity, of being interested in the other person? I am quite eager to admit that some of my conversations either turn into the type where people have to ask me questions and I’ll respond, sometimes with a long story and sometimes hardly, but won’t ask them questions, on in a kind of cross-examination from my side.

Of course, there are other factors contributing to some discussions going poorly. The “locked up isnide” thing, for instance, is getting me in trouble in mainly formal discussions, but not in informal ones, except if you were to mean that I would be unable to initiate a conversation appropriately and hence get like this - but as I said on Monday, I consider them to be different issues. Then why do informal discussions go wrong so often? I think that is a lack of skills, in some way, but I find it hard to understand.

Lately, I’ve been having numerous discussions on the topics of social interaction and communication at training home. This has led me to be kind of frustrated several times. For one thing, Renee (my coach) gave me some plan on how to prepare for a discussion, which was meant as a way of preparing for the discussion with the student counsellor. It didn’t make much sense for me, all sounding rather logical but I couldn’t apply it at all. Eventually I ended up preparing the discussion with another staff folk and it ended up going all well, which, unfortunately, isn’t to be attributed to my good communication skills but to the student counsellor’s good knowledge of needed accommodations.

In the next week, which was two weeks ago, I had two officially scheduled discussions with staff folks, apart from my weekly discussion with my coach. They both were meant rather informally and embarrassed me, not so much cause of my own feelings about them, but cause of my perception of what others might think. After all, the scheduling of such discussions only highlights my social ineptness, and I feel embarrassed about that, cause what person whose only disability is blindness, is so socially awkward like me? Both discussions didn’t get anywhere and ended in my getting totally “locked up inside”, giving me “flashbacks” (put between quotation marks cause I don’t mean the serious psychological connotations) from tenth grade, when this was happening to me once or twice a week on average. I remember a question from my tutor in September, 2003: if I only got like that when I was having discussions with him? Well, no, even though when discussions are more serious (and hence, less informal), the feeling is much worse and it’s harder fo rme to get out of such a position. But I get in this state to a greater or lesser extent whenever I have to initiate social interaction.
This statement connotes shyness, and I’m everything but shy, cause shyness connotes fear of making a fool of oneself, which I don’t have in casual interaction.

That’s one reason why I want to differentiate between passivity and “locked up inside” feelings. The former is just that, a lack of initiative in social situations, while the latter is something much more complicated that I find hard to understand. An in-between form occurs when I have to interact, but cannot. This is what was apparent in the scheduled discussions - I had to interact, cause it was on my schedule, but I couldn’t -, but also, less obviously, on some occasions when people offer me assistance or, for example, when I called a fitness centre I plan to go for exercise, a couple of weeks ago: it is a mixture of not knowing what (exactly) to say, which often leads me to be passive, and feeling kept from saying what I know I want to say.

Passiveness is not shyness. Passiveness, as I mean it, is a lack of initiative, and, in my experience, this has nothing to do with being shy. It can, for some people, have to do with it, but it doesn’t have to. I am not shy or passive once I’ve gotten into some political debate, for example, or even when you ask me about stuff like my schooling or my family. A discussion with Mar, one of the staff members, this morning, highlighted this real good: I may not’ve seemed rather socially skilled when we discussed these things, cause our conversation was pretty one-sided - in that I didn’t ask about Mar’s point of view -, and this may also connote passiveness, but I like to think of it more as a lack of reciprocity than as a lack of initiative, and it is most certainly not passive, cause someone may get real active in a discussion with it getting real one-sided at once, ie. when the person talks about himself all the time, and it is something I might do at times, too.

I do have a problem taking the initiative, I most certainly do. Forget about going up to someone and starting a conversation. I never, ever do that, and I consider it more of a problem than the pretty basic skill of introducing myself, which folks say I have a problem with. I don’t spontaneously introduce myself. I always do when someone comes up to me. That may be one reason why I didn’t recognize it as a problem when Renee asked me if I was good at that. I said I would do that, but I wouldn’t cause I wouldn’t go up to someone new (or when I’m myself new, like when I first came here) and introduce myself. But I may confuse the two things, as was happening with Mar first being here since I started my training (she doesn’t work very often): I didn’t initially come up to her and introduce myself, and consequently we didn’t get to introduce ourselves to each other, cause she had long gotten to know my name and the fact that people wanted me to learn to introduce myself, so she decided it was my turn. However, whenever Mar would be having a discussion with someone I knew, or theoretically maybe even someone I didn’t know, I would be eager to jump in and make comments, again, without introing myself. So in one way it’s assuming that when you jump into discussions, you know each other, or have at least met once - it does happen that people start conversing without knowing each other’s names, like on public transportation or in doctor’s waiting rooms, but oftentimes when you’re going to meet each other more often, it is assumed that you will first introduce yourselves and then get into discussions, or that, upon jumping into a discussion (which I’m way too good at), you’re going to intro yourself, which is something I pretty much skip on such occasions. And theoretically, here, it could’ve happened that we were sitting on the dinner table on my first day and having a conversation without any other client knowing my name or my knowing theirs. That is yet another difference between taking the initiative to start a conversation and taking the initiative to introduce yourself.

All of these, however, in my view, are varying manifestations of the same sort of “category” - it’s all about initiative-taking, which in my case is very poor. One may address the topics separately, or list them separately on plans, as happened to the adapted plan for having a conversation that Renee wrote last week, but when you were to make a list of social skills, as in tenth grade, they could be listed underthe same heading. Then, I might not understand and so one might make sub-statements like, under the heading of initiative-taking in conversations, stuff like introducing yourself, starting a conversation, etc.

This all, however, and the issue of reciprocity, are pretty different from the “locked up inside” issue, that was highlighted pretty much last week, and also to an extent today. Even though each of these issues first got highlighted at around the same time and has mostly been highlighted by the same people, I’ve always seen them separately and continue to do so. The deficits in social skills, for so far as they are objectively noticeable as deficits of initiative-taking, reciprocity etc., are not comparable to the behaviours that have no underlying skills deficit, let alone from the feelings they result from. There’s still a lot of grey area, or situations in which both play a role. Asking for assistance on the street is among those: I’ve noticed it’s quite difficult to get a person’s attention when you cannot make eye contact, but once I’d noticed that it was possible, there were still my feelings about asking for help that complicated the situation. Another example would be the issue of walking routes with training home staff lately - when I found I knew the route but the staff found I still had to improve my mobility skills (both of which were true): I was rather curt in stating my views - a skills deficit -, but they were feelings that were in a way troubling, that motivated me to react this way.

The initiative-taking issue, in itself, can be seen as both. Usually it annoys me when people see it as a psychological thing, cause it seems to deny my actual skills deficits. But all of these paradigms go along the lines of: I never had any friends and so it got me to withdraw, assuming no-one wants to befriend me anyway. This is partly true, but I do have skills deficits. No matter what was first - my skills deficits or something causing my trouble -, I’ve had problems in social situations for over ten years at least, and even in those ten years, a lot of skills deficit can develop, if it weren’t there before already.

The opposite also happens, assuming that all my difficulties are skills deficits, rather than performance deficits, and if they were performance deficits, they’d inevitably be due to unwillingness. This, however, is less harmful where behaviours that I can, sometimes with difficulty, execute by “just remembering” are concerned, cause all it leads to is unnecessary explanation of skills, and the subsequent expectation that I’ll perform the skill, will also help me improve my behaviour.

What to do when the performance deficit is more complex, like with the “locked up inside” issue? It is a performance deficit, in that I know exactly what to say but won’t/can’t say it, and yet “reminders”haven’t gotten me over it. I’m the only one who can get over it, of course, and that goes for this issue even more than for all my other deficits. It’s difficult, in that it makes me feel rather bad when I am not succeeding at overcoming this issue, which so far I rarely can. It sometime smakes me feel as if, not only am I the only one who can get over this problem, but it’s sort of an obligation to others cause after all, who was feeling sad about not having much social contact? Then go ahead and make that contact, huh? And not responding when someone asks you a question, is about the curtest one can be.

I borrowed a book of essays on medical ethics from the Dutch library for the blind. I’m currently reading one of the author’s essays on euthanasia. The author is a Christian, yet he supports euthanasia as defined as ending somone’s life on that person’s request. That is not to say the author has no objections to euthanasia: a doctor should always do good, and that also includes encouraging the patient to try alternatives. However, basically the author sees no problem with the principle of euthanasia in itself. And neither do I.

I oppose euthanasia on the basis of its practical implications: the issue of whether a person with severe disabilities can decide independently that he or she wants to be euthanized, for example. After all, many cases of “mercy killing” make damn clear that it’s not always the disabled or ill person who decides what happens to his or her life, but rather the family, either directly or indirectly. Look at Jimmy Chambers’ case, for example, where his wife wanted him killed rather than he himself wanting to be euthanized. Terri Schiavo and many severely disabled children, like Tracy Latimer or Haleigh Poutre, are in an even more complicated situation, cause they either cannot indicate their wishes (anymore) or their wishes will be questioned anyway.

Another issue is the doctor’s obligation, in my view, to offer treatment where possible, and to refuse to assist in suicide or euthanaisia if treatment is declined. A while back, people here in the Netherlands argued that euthanasia should be legal on those who “suffer life”. Once again, I would agree that there is no problem with the principle of euthanasia or assisted suicide on the person’s request, and neither does the extent of a person’s illness or disability change the rightness or wrongness of euthanasia - if only disabled people could be euthanized or assisted in their suicide, as is the case in most places with euthanasia laws, it would be discriminating -, but what is the problem, is that these people should be in the mental health system, and many are not. Try advocating better psychiatric care instead of euthanasia.

The author of the essay claims that euthanasia is an appropriate possibility for Christians, and he uses correct arguments for that, which, to a non-believer like myself are very clear but which may pose trouble for believers. What many Christians say, and what I don’t agree with, is that God is the giver and taker of life, and that He alone can decide when and how a person will die. This, however, is an illogical belief given modern medicine. I once wrote about God co-existing with science and named the exampel of some Christians not wanting their children immunized cause they think that if a child gets an illness, it’s God’s will. At that point, I wondered whether God hadn’t given us the medical knowledge to develop vaccines. And the same goes for every other medical treatment available: if you decide that God is the sole governor of life and death, no medical intervention is allowed. And even if you believe that, and on that basis decide, being a doctor, not to treat a particular patient, that even is a decision. The author of the essay correctly states that the issue of euthanasia in Christianity is not about whether we’re deciding or God is, but whether a person can decide for himself or someone else, like a doctor, is going to decide for him.

I’m not religious, as I said, and I can understand it if many Christian right-to-life advocates (well, it’s not really a right, if God is supposed to be the only decision-maker) are offended by th is idea, but for me it makes clear that it’s not about the principle: it is perfectly alright, in my view, for a patient to ask to be euthanized, as much as it is alright for him to commit suicide. It is not desirable, of course, but it’s not principly wrong. And neither is it wrong for a medical professional to support euthanasia in this context, but it’s the practical applications that make it inappropriate.

I’ve been reading some things about MBTI personality theory lately, and of course been taking a few tests. On all, I score as about as introverted as can be. I mostly score as an INTJ, but with most qualities bordering on their counterparts - except for Introversion. The only exception is the BlogThings test I just took, and also took last year, where now two of the suggested types are Extraverted. I’m not, of course, but I’m not as strongly introverted as is mostly being suggested: scores around 95% are based, in my view, on an incorrect definition of introversion.

I’m not too knowledgeable about Jungian or Myers-Briggs personality theory, but their definition of the difference between Introverts and Extraverts, according to Jack Falt’s article has to do with what people get their energy from: Extraverts tend to get energized by interacting with people and get drained easily when they have to be on their own, while Introverts get energized by being on their own and feel drained quickly when in social situations. This does have some connotations with one’s ability to interact socially - if you’re not good at socializing, you’ll most likely get tired in social situations easily cause of the energy it takes to socialize -, but I feel that introversion is often confused with social ineptness.

I am myself very socially inept, but that’s not to say that I get as energized by being on my own and as drained by being around people as the extreme introversion rates would suggest. In fact, I’m finding that sometimes I need to be aroudn people cause I just cannot sit in my room alone 24/7. It wouldn’t seem surprising - everyone needs social contact at times -, but its extent does surrpise me. So, one can seemingly be socially inept while still having interest in socialization. And furthermore, one can be passive in social situations while still having an interest in social interaction. Cause, having read quite extensively about the “active but odd” style of social deficit, that is pretty prevalent among people with Asperger’s Syndrome, the idea that one can crave social contact and still be awkward with people, is not new to me. However, being passive is not the same as not desiring social contact, assuming that if the person desired to socialize, he or she would take the initiative to. It’s simply a deficit in initiative-taking, either cause of social skills deficits or cause of fear of making a fool of oneself.

That’s another definition of introversion, equally incorrect, that I’ve often seen: that of social anxiety. There’s a community for people with social phobia, Avoidant Personality Disorder and the like, called The Introvert’s Hideaway. The definition of introversion presupposed by this community is far too rigid: Avoidant Personality Disorder and social phobia, and even simple shyness, are based on fear of social situations, and usually more specifically fear of making a fool of oneself in interaction. I am not really shy, but I am an introvert. And yes, I do experience some degree of discomfort in social situations, but that is based on a lack of knowledge of how to act socially, rather than a perceived inadequacy. In other words, a social phobic may be perfectly socially skilled, yet avoid social situations cause of fear of doing the wrong thing, while I don’t fear social situations by definition, but feel discomfort cause of a lack of knoweldge of how to act.

In this sense, the avoidant/social phobic definition of introversion is more close to the MBTI definition than is social awkwardness. However,, as I said, it’s too rigid, cause introversion in general is not based on fear, but on what gives a person their energy. I assume that many social phobics/avoidants are introverts in this sense - although theoretically social phobics could be extraverts, but the extravert with social phobia would have a dual handicap, caus enot only would he lack the confidence to interact with others when he has to, but he would also be deprived of his source of energy -, but not all introverts in this sense are social phobics or even shy: with many, it’s just a lack of desire to be around others most of the time.

Yet another characteristic associated with the introversion vs. extraversion topic, is whether one prefers a few intimate friends (considered introverted) or many acquaintances (supposedly extraverted). In this sense, it is hard to say whether one is introverted or extraverted, if other issues, like social ineptness, complicate the situation. I simply don’t make friends easily, so I have the extraverted characteristic of having a ton of acquaintances rather than a few good friends. On the other hand, my reserved nature, that in part contributes to this situation, is considered introverted, and it has nothing to do with the superficiality attributed to extraverts: that they don’t appear reserved cause they’re easy to read. I don’t share easily, and it contributes to the fact that I don’t tend to make close friends, among many factors related to my poor socialization skills. So some of my introverted characteristics, combined with some extraversion - that I need to be amongst other people at times -, puts me in a position to appear very extraverted in this respect: I go out to interact with people for enjoyment sometimes, but cause I don’t have any real frineds, I just hang aroudn with anyone, hence creating a large cycle of distant acquaintances. This is not my preference, but it is my situation.

Today while walking the route to the supermarket, I had a brief discussion with the new student in work placement here at the training home. She’s doing an education called Social/Pedagogical Work and plans on going to a teacher training college after finishing these studies. She’ll get a degree in elementary education and is planning on specializing in special education, so I asked what type of special education she wanted to work in. She said she didn’t have a preference. I couldn’t keep from making a negative comment about my own special ed experiences, but didn’t feel I had the time or opportunity to elaborate so just said education is at a low level. “Karin likes her school,” the trainee commented, referring to a training home client with a mild intellecutal disability at whose school the trainee used to have an internship, immediately thereafter remarking: “But Karin would never go to grammar school [my high level high school].” It was a logical remark, given my own statements, but it made me wonder if it were in fact that simple.

Saying that it is that simple, in a way, implies that the only problem I faced at special education was my high intelligence, an assertation I’ve always tried to disprove. It has some merit, of course, in that a major issue for me was that the academic curriculum was at too low a level for me. It is also true that my intelligence was denied, at least, by some people - my fourth and fifth grade teachers didnt’deny it, but my sixth grade teacher did and my mother says that so did the 1997 evaluator. However, what’s currently troubling me, now that I’m taking a gap year to allow myself to catch up somewhat in skills I’m lacking in, is that, as much as they denied my abilities, they reacted inappropriately to my difficulties. I surely attribute some of my lack of progress to a lack of motivation, but sometimes you just weren’t taught to do something, or you were supposed to be taught by being held back in for example lunch group. People continuously remarked that my daily living skills were not what they should be. As if I didn’t know that! I cannot remember, but wouldn’t have been surprised, if special ed thought I wouldn’t be able to live independently, as they plainly informed another girl, also a former rehab student and training home client who now lives on her own. I’ve always heard horror stories of over-protectiveness and lack of exposure to “the real world” about boarding students, and what did they want me to become by September, 1997? I truly wonder about the motives - maybe I’ll ask my mother if I can have the 1997 report of which my having to go residential was the conclusion. It didn’t happen, of course, but it all makes me wonder: what did the people have in mind when they acted the way they did? Not my becoming as independent as could be, I think. I’ve sometimes wondered if their only aim was to keep me in special ed. No, I’m not going to deny that I wouldn’t do all fine in regular education, and I wouldn’t say that I could do without any help from the blindness field anymore - that’s exactly why I’m taking this gap year now -, but it all makes me feel as if they just wanted to portray me as an incapable person.

But why I feel uncomfortable with the idea that my high intelligence was the problem in special ed, is that it seeks to deny any other problems of mine. It’s the “she has a dual disability” claim made by my Mum, ie. blindness combined wiht high intelligence. Which is simply not true! And it’s also what makes my current image of “the intelligent one” difficult to deal with: in the battle over whether I was intelligent or not, in 1995, or maybe even 1992, till 1999, my actual difficulties were being ignored.