Astrid’s Journal

Is there an actual difference between those situations where I get frustrated cause of irrational beliefs - ie. the situations where it frustrates me that I cannot do something, cause I jump to negative conclusions too easily -, and the situations where I feel overwhelmed by a chaoitic environment, like last Tuesday? I feel there is, but it’s not so obvious as it sometimes may seem. More specifically, a person with a higher frustration tolerance than mine would not jump to distressing conclusions based on a simple mistake as easily as I do, and when I’m feeling emotionally bad, I’m more easily overwhelmed by chaotic or confusing events than I am when I feel well.

There are some situations that are obviously about behaviour, like last Tuesday. In these situations, the only connection with emotional issues might be a very indirect and irrelevant one, like when I’m very tired cause I once again slept extremely poorly - as I often do when I feel bad. In these situations, it makes no sense to ask about feelings, cause they don’t matter; the feeling is frustration, but that’s obvious and is solely cause of my low frustration tolerance. I could, in such situations, only say that I don’t like it when people talk loudly or something like it. I am, of course, more irritable at certain moments than I am at others, which should not be interpreted as a sign of better handling my irritation. For example, two weeks ago when having pancakes with all training home clients, I could handle the same chaos that was apparent last Tuesday much better. I didn’t need to handle irritation, cause there wasn’t any. That is positive, of course, but it says nothing about my ability to behave well. It would if I were able to handle my irritation of last Tuesday more effectively than by getting grumpy - which I wasn’t for the most part, though I tried to.

Are there also situations that are obviously emotionally-related? Well, there are which are for the most part emotional, but in this strict context of frustrating situations, there are no that are solely emotional, simply cause my rather poor frustration tolerance, that is one of my bad qualities, impacts how I react. A person with high frustration tolerance might have as negative beliefs I do and might jump to conclusions as easily as I do - though he most likely wouldn’t -, but if he were to, he’d most likely not act out like I do. That is something people often don’t seem to recognize, and, if they do, don’t seem to care about. Not that, when I’m emotionally feeling bad, I like to get reactions about pulling myself together, but it needs to be said that it’s not “normal” (oh well, it may be a variation of individuality, but it’s not something to be expected) to react like I do when I feel emotional.

Most situations, however, have something of both behavioural oddities and emotional issues, to a greater or lesser extent. People, when reacting to these situations, tend to overlook either of these sides completely, and it depends on the situation whether I take care to correct them. Mostly I don’t: when someone feels I’m just acting out in a situation that, for me, had lots of emotional connotations, I often don’t feel I should highlight my feelings about the situation, either because I feel it isn’t going to do anything about it anyway or because I feel like I’m not allowed to have feelings relating to the situation - both of which can be true at times, if you think that there are right and wrong emotions for every situation (which I’m not sure about). And when people seem to see the issue as solely emotional, an emphasis on behaviour from my part often only intensifies the emotional turmoil relating to the situation, so I skip it and let people draw their own conclusions based on what they see. After all, if they don’t think I’m exhibiting behaviour problems, than it makes no sense to try to convince them that I am. I am the one who has to change, after all, and if I realize that I’m acting out, I should try to alter that.

The only case in which an overemphasis on either side of the situation gets really problematic, is when it becomes the person’s overall paradigm. Like with my parents believing I’m generally behaviourally disordered - even though, at the deepest level, they often (incorrectly) assume emotional problems -, I do feel it’s a problem that they don’t seem to see the relevance that feelings hold at times, beyond those feelings they presume at the ultimate level. Sometimes (most times) I feel bad about a current or recent situation, most certainly not about something that supposedly happened years ago and that I supposedly want revenge for!

On the other hand, an overemphasis on emotional issues that I sometimes see with some training home folks, seems to reduce me to just a normal individual with serious emotional problems. The paradigm is often held by people who have no idea of some of my actions, as I wrote on Tuesday. These may be actions that took place during the summer of 2004, so nearly two years ago, but the fact that they most certainly weren’t normal for a person at that age, even if she had serious emotional problems, still makes me worry that the possibility that I’m going to act like this again, is still there. That scares me, and it makes me want to emphasize the behavioural components of the problem, and specifically how disturbed I actually am. That is not to say that I want to in order to have an excuse - the same goes here that goes for the social skills thing -, but I know my situaiton before starting rehab or training home and I know I haven’t changed in this fundamental way.

There’s something related to this that makes me want to emphasize my behaviour issues: that the way people at rehab or training home react, is not the way people at college, for instance, would react. I’ve always hated, and still hate, sayings starting with the phrase “But at university you’ll also have to…”, because, when they talk about something I’m trying to change but apparently can’t - and it’s most things -, it always leads me to conclude (probably at least partly correctly) that then I’ll fail at university - the part that is incorrect may be about my ability to compensate by for example being academically able, not about my inability to (fully) change my behaviour. Of course, remarks aimed at giving me an incentive to try to change (I’ll have to act differently at college), are not in themselves bad - I have to change my behaviour -, but are bad in assuming that, if only I try my best, I will once be able to act normally. And I doubt it, cause I know what I was like and could be like. I still hope that the serious issues were just of the summer of 2004, but after eight years of knowing that I don’t act normally, do you think it’s strange that I’m losing some of my hope and am, consequently, highlighting its being a behavioural problem (characteristic if you want) of mine?

This evening, I had one of these moments when I get totally frustrated without a clear reason except that I can’t cope with the chaotic situation. It led to a discussion with Arda on my behaviour and paradigms about it. I’ve wanted to write about this before, but I think I’m going to do it now.

I’ve encountered many paradigms about my behavioural situation over the last eight or so years, since I first realized I had these difficulties. However, all of them seemed to have one thing in common: the idea that I’m disturbed. Now some training home folks don’t seem to agree. They seem to see my behavioural difficulties as just a bad quality of mine like other people’s bad qualities, and, in some ways, I’d agree that not all negative qualities need to be exaggerated into being some intrinsic characteristic of mine that is so pervasive that it should be considered a serious problem. And I’m willing to admit that I may’ve done that a little too much over the past four years, and, of course, particularly during late 2002, 2003 and early 2004. However, there are some reasons why I do consider my behaviour issues to be serious enough to consider something more than just bad qualities, and that goes beyond the simple fact that everyone except for some training home staff considers me behaviourally disordered.

An apparent paradigm, that is very prevalent among training home people, is about not learning certain skills, and, even though the people seem to apply it to daily living skills, it’s rather possible that they feel this way about behaviour, too. However, I’ve known about this issue for over eight years and, for the same period of time, have tried my best to change my behaviour. And, unlike daily living skills, there is no “missing” knowledge that I would need to get before being able to get over my issues - cause of course I’ve known about poor daily living skills for almost as many years, but I couldn’t cook before I learnt what cooking actually was and how it was done.

I feel very frustrated with the “behaviourally disordered person” versus “a person who behaves poorly” issue. The latter is supposed to be more positive, because it criticizes the behaviour, not the person, but what it connotes to me is that if only I tried my best to behave well, I’d behave well. Then, haven’t I tried in all these eight years, or can’t I judge that?

There is, of course, a difference between a bad quality and a bad habit and, in this sense, my behaviour issues can simply be considered bad qualities, implying that they’re not merely the behaviouristic response that should be extiguished - in other words, that they’re characteristics of mine that I can shape to be less negative -, while not going to far as to consider them to be disordered beyond normal variations of individuality. In other words, I could consider myself a person with a low frustration tolerance, not just a person who acts frustrated, without making up the “low frustration tolerance disorder” I once proposed (in a talk of diagnoses and behaviours) on a preemie list.

Of course, training home staff don’t know about the extremes of acting out which I experienced. Does that matter? Not when I’m not going to act like this again, and I partly hope so, since who knows, maybe the incidents of 2004 were just some aftereffects of puberty that were a little over the top. It’s 2006 now, and, even though my actions of 2004 were extremely concerning for an 18-year-old, it makes no sense to care about them if they don’t exist when I’m nineteen anymore. Then it holds absolutely no relevance that, at age eighteen, I acted in a way that got a 12-year-old boy into a police cell for five days for lack of a psychiatric unit place - that particular event was in the news when I was dealing with behaviour issues and was reminded of August 9, 2004. I don’t need to convince anyone that I used to be behaviourally disordered, if I’m not now. And I don’t know if I am now.

I know that there are behavioural and emotional components to this issue, and the emotional ones are greatly recognized at this moment. Of course, everyone knows that there are situations when I behave poorly without such a reason, like this evening, but even in situations where there are emotional components, I wonder how much each of these issues relate. Irritation is an emotional thing since it’s a feeling; irritability may be, but you have to go a level further in understanding what’s going on with me. General level of coping with irritating situations is most certainly not anemotional issue, but a behavioural one or a quality. Last Friday, when we were having dinner, I experienced each of these. At first, I was irritated cause the staff folk put sauce on my plate (after I’d tried to serve myself) without informing me that I didn’t have any. Then, when I tried to eat the spaghetti we were having and couldn’t get any on my plate, I felt irritated just cause it irritated me; it was the feeling I was having, and that probably related to my already being somewhat irritated due to the sauce thing. However, my racing mind, after several attempts at eating the food correctly, and negative feelings that relate to recent uncertainties about my situation, were more than “just feelings” or “just behaviours”, as they did - however inappropriate that may be - have a connection to the deeper feelings I’ve been having lately. The inappropriateness of my easily jumping to negative conclusions, may be “just a quality of mine” or fall under the “level 2″ category as well, and probably it’s a combination, in that my making poor interpretations is one of my bad qualities, but it was influenced by my recent situation.

I’ve always hated an overreliance on either side of the issue - emotions or behaviours -, because in most cases, it’s a combination of both. There are some clearly behavioural situations, like the one of this evening, and there are some situations that are rather emotional, but most are something in between, and, of course, the two influence each other, as this evening’s discussion, which was rather emotionally frustrating for me even though it was brought about by a simple behaviour error, illustrates.

I’ve been reading a book entitled Autobiography of a Face by Lucy Grealy. It’s the autobiography of a woman whose face is severely deformed due to a tumour. The book mainly focuses on the psychological implications of her unattractiveness. The first part, where Grealy describes being teased at school due to her misfigured face, doesn’t really impact me, cause, even though I was teased in the fifth, sixth, seventh and eighth grades, I never attributed that to any physical characteristic of mine; I’ve always known that it was either my behaviour trouble or my high intelligence in a group of people of average intelligence - the former sounds more plausible than the latter, which was preferred by my parents as an explanation of what happened in fifth and sixth grade. Both of these characteristics are internal, not external, and it is correct that if they are bad, it is something about my deep being that is bad. That is not the case for teasing that is in effect due to a physical characteristic, such as Grealy’s deformed face or my blindness, even though Grealy always felt that her unattractiveness was a flaw of her entire being - and so did I about blindness at times.

Over the years, I’ve had great difficulty seeing that it was not blindness or any of the inabilities resulting from it, that was intrinsically bad, but something about the way I behaved. The difference between me and Grealy is, that her bullies teased her for her outward characteristic and mine did not - though they, at least at regular education, may have thought that it was something about my blindness. In fact, it was truly me who assumed a relation with my blindness, that I now vigorously deny - at least, a direct relation. I still do not deny any indirect connections, because my at least somewhat extended dependence on others - certainly now that I’m still learning alternative techniques, and maybe also in the future -, and my status as a member of a minority group, make it both less acceptable to behave inappropriately and, for me, more difficult to behave normally (which is, of course, partly a behaviour disturbance but also partly something emotional). That is some weird paradox that I also seemed to find in Grealy’s book: her unattractiveness makes it, in her perception, more difficult to come across acceptably, and the fact that she is so troubled with it, she seems to discover in the end, makes it more difficult to act appropriately.

That is a part of the book that I find somewhat hard to understand, but that is rather interesting and which reminds me of my own situation. Eventually, Grealy gets a face reconstruction that makes her face look normal again, yet the happiness she expected to get from an attractive face, does not come and, furttermore, she does not recognize her face as hers anymore. It holds some relevance to my own feelings about blindness and people’s, including my own, former or current ideas about sight restoration.

There are several possible reasons to wish for the restoration of vision, and over the years, I’ve had all of them, though to different extents. I, at least over the last several years, never wished for sight restoration to a greater extent than that which I’d lost over time. I did wish to have the vision I’d lost back, because I appreciated what seeing like I used to do was like. For this reason, I never wished to be sighted cause I have no concept of what seeing normally is like and, hence, do not miss the joy of seeing something I could never see. I also know enough about the neurological aspects of vision, from what my father knows and from my own (recent) readin of R.L. Gregory and Oliver Sacks, to know that a restoration of eyesight, if it is possible (which it of course isn’t even with my eye condition), would not mean a restoration of functional vision. In all patients functionally blind from an early age, severe visual agnosia is the result of sight restoring surgery and, as a result, I’ve always known that remarks like those made by Stevie Wonder about wanting to see his wife if only it were for a few minutes, make no sense cause, if it were possible to make him sighted (which it isn’t as far as I know, since he has the same eye condition I do), he wouldn’t have an idea of what he was seeing. I always wonder why people who, I assume, have been totally blind their entire lives, want to see for the joy of it, cause I’ve never had that feeling
myself, not having the slightest idea of what seeing more than I once did, is like.

But there’s another level to blindness, and on that level, I’ve wished I were sighted a lot. It is the level of the perceived or real implications of blindness. This issue has been very relevant to me ever since the summer of 2003, when I joined BlindKid and realized how stupid I was compared to the blind youths whose parents hung around the list. For a long while, I believed I could never meet up to the expectations set for these children and hence, either the expectations set for their children were stupid if they were to be generalized, or my being was so flawed that I was intrinsically less capable than what people consider to be the average blind person.

My feelings, however, over time, were distorted to the idea that my situation was due to blindness, and further distorted to the idea that it was inherently due to blinbness. There were, of course, several factors contributing, including my vision loss of 2004 and most people’s overemphasis on blindness as the subject of all of my worries. In any case, by the middle of 2005, I’d made blindness to something so disabling that I was surprised to see blind people doing textural arts at a rehab centre that, by the way, is not the best to be imagined.

By September, 2005, when I’d started rehab, the gap between what I wished I could be and what I saw I was able to, narrowed when I learnt to do things like travelling by bus, cleaning a bathroom, and textural arts, and, at the same time, realized that putting non-disabled values into perspective does not mean abandoning them. I was convinced, at least rationally, that certain means of being dependent on others was acceptable as an alternative technique, and I convinced myself that with these alternative techniques, I could be the Capable Blind Adult (caps intended) the people on the lists claimed to be or to be preparing their children to be.

That is not to say I felt that my being able to become competent was a personal enjoyment. Being able to clean my bathroom, use public transportation, etc. were, but the general prospect of becoming like the people on the lists, still felt, and to this day feels, more like a duty than like a goal to me. Even though I’ve lost my general resentment about the positive philosophy of blindness held by the NFB - having translated it to meaning that blindness in and of itself, with proper training and opportunity, is not the creator of limitations in general functioning -, I still resent the rigid ideas expressed by some people about people who are “just blind” and, for that reason, should be able to do this or that, and the statements that ridicule blind people who do not meet the criteria for the “Competent Blind Adult” degree. In other words, I still resent the ideas based on the view that there is no disabling factor in a person whose only diagnosis is blindness.

Over the past several months, I’ve decided to stop caring about what my American list colleagues say about blindness and its supposed implicatiosn or non-implications. Much in the same way, I still refuse to care about what Bartiméus assumed about me, and I am skeptic as to what training home staff and rehab workers think of my abilities. I refuse to take for granted any paradigm about my abilities or inabilities. If people don’t know of an alternative technique to do something, it simply means they don’t know of an alternative technique for that, not that I cannot do it, yet if a person is convinced I can do something yet doesn’t tell me how, that does not change anything about my situation.

What happened over the past several years, is something that one may view as cyclical development, in that in some ways I’m very much in a similar position now that I was in the first half of 2004. However, I feel there is something radically different about my current situation to that of 2004: I refuse completely to believe that something is inherently related to my blindness. People have called it not accepting blindness, much in the same way that they did in 2004, but I refuse to agree. I’m not denying or resenting blindness, I’m just unwilling to believe blindness defines me, as if, if I do, I have to choose a paradigm about what blindness means and doesn’t mean, and I refuse to adopt a paradigm except that there is no generalized paradigm.

In this perspective, one has to see my former wishes to be able to see, based on the view that blindness defined me and that, if only I could see, I were able to do everything everyone else was able to do. Of course, this is true for certain things - like driving -, but if blindness in itself caused all my abilities and inabilities, what paradigm about blindness do I have to believe? I still find it difficult not to cling to paradigms - particularly the NFB one in the “duty” form -, but I’m trying.

When I’m able to look at my situation from what I’ve come to call a “realistic” viewpoint (even though it’s philosophically Idealist), I also realize that, much in the same way as blindness does not define my situation, neither would an ability to see. Grealy, in her book, makes clear that, even though she had come to identify herself with her face, plastic surgery did not change her into the person she thought she’d be if only she had an attractive face. She herself had to change her attitudes, and that applies to me just as well - yes, it still does. On one level, being able to see would not enable me to use cooking or housekeeping techniques I haven’t yet learnt and my sister has. On another level, it would not enable me to interact with people the way my sister does. And on yet another level, the one Grealy highlights, it would not change my attitudes if I weren’t to change them myself. Each of these things may be due to different factors, and blindness may or may not contribute to them, but sight restoration, even if the subsequent visual agnosia were overcome, would not change anything about me except that I would then be able to see. It might change my learning or other opportunities in the future, but not my status after twenty years of severe visual impairment, much in the same way that plastic surgery made Grealy attractive in the future but did not change her interactions with people and attitudes based on unattractiveness.

There’s been discussion on various E-mail lists about some UK doctors who consider preemies born before 25 weeks gestation to be “bed-blockers” because they’re much more expensive economically than older preemies, whose care might be compromised. In all of these discussions, I’ve been highlighting the errors in the “babies born before 25 weeks gestation are economic disasters” reasoning: that gestational age cannot be calculated 100% accurately, that it’s many factors (gestational age, birthweight, gender, etc.) that determine outcome and that hence, it’s just an arbitrary line, and that it’s mostly certain conditions, like brain damage, that influence outcome. In all of my messages, I’ve been trying to be informative as opposed to argumentative, firstly cause people just won’t agree on these matters and secondly - which is something I’m struggling with - cause I’m unable to explain the personal feelings this controversy generates.

It was 2001 when I first found out about the 25-week limit in the Netherlands. A few months later, in March of 2002, I found out about the “calculation mistake” made in my own situation and was deeply confused, cause in 1986, the (much less strictly enforced) limit was at 26 weeks. I felt I didn’t have the right to live, since I was born too early. At the same time, I was greatly troubled with my blindness, yet at the same time I made sure to tell everyone that my not being all that happy had nothing to do with my disability, for fear of being said to have a “poor quality of life”, so that I’d negatively impact the ethicists’ and neonatologists’ views about preemies. In a way, I was troubled with my situation not only cause I had difficulty coping with it, but also cause I felt an obligation to prove that I was all fine, to prove that I “rub along”.

That “rubbing along” stuff got a new dimension in late 2004, when I firstly read the article in the October 2, 2004 paper and, secondly, was troubled by questions about my own future. The situation that my parents feared that I might not “rub alogn”, and the deep meaning that’d gotten over the years, was not new, but the implications it got were much more concrete - and have been ever since.

A few months ago, there was a discussion on PREEMIE-CHILD about high school graduation: researchers wanted to use it as a means of showing parents that, even though kids may be in special ed, they’ll still graduate from high school. I oppose this type of research, for it is solely academic, while most kids don’t get into special ed for solely academic reasons, and academic achievement is not the same as success. That is another “hot button” of mine, of course, connected to my feelings about my high intelligence and how it’s often been equated with success or the other way round -
that people assumed I was dumb, based on my failing development in non-academic areas. It’s something that’s been greatly troubling me lately, as on one side of the line there’s special ed who used to think I couldn’t be independent at all, and on the other side, there are my parents who would’ve wanted me to go to Nijmegen by last September yet, eventually, agreed to my taking this gap year. I feel that I’m something in between, but I don’t know where exactly I fit and I don’t know where I’ll be in another five months. In any case, my academic intelligence has nothing to do with this.

There’s also my behaviour that was the subject of heated debates between special ed and my parents in the period of 1995/1996 till 1999. Well, actually it wasn’t so much the subject of debate - I wish it were, but it was interpreted as dumbness by Bartiméus and as sort of non-existent by my parents. My behaviour trouble was something about which opinions could vary radically. The theme of the years 1997 and 1998, I contend, was whether I were intellectually deficient, behaviourally disturbed, neither or both, with my parents being convinced I was intelligent and Bartiméus being convinced I was not, and opinions on my behaviour altering somewhat. They still do: at one point, I find my parents calling me “autistic”, “psychotic” or some other randomly selected psychiatric label, yet a short while earlier or later they’ll consider me to be just acting out somewhat. I’ve always hated the latter, because it was minimizing a characteristic of mine that - no matter how much it may be in need of change (which I do think) -, is still apparent and hasn’t, in all the eight years that I’ve known about it, been something I could turn away by pushing a magic button. When I was younger, I was convinced it’d be over when I was older, but now that many of my other deficiencies (like my daily living skills problems) have proven not as absolute as I used to think they were but my behaviour has not, I’ve come to doubt that belief. You may, of course, say that I got occupational therapy to learn daily living skills, but if the same rule applied to behaviour, telling me how to act correctly would rid me of my behaviour problems, which it didn’t, since so many people over the last years have taught me, in this way, to behave normally, yet I still don’t.

Over the years, it’s not been blindness, but my behavioural problems, that have caused me the most worry as far as my “rub along” factor is concerned. If it were “just blindness”, I’d “rub along” without any problem. In fact, if it were “just blindness”, there were no reason why I’d ever not done perfectly well, ie. when I went to special ed. My parents still want me to believe I went there to learn Braille, but that’s nonsense: firstly, I didn’t learn Braille till 1993 while I went to special ed in 1992, secondly, I started special ed in May, not September, and thirdly, the first special school my parents checked out was not a school for the visually impaired, but one for the physically disabled. Likewise, in 1998, the reasons for advising special ed, included my poor braille skills, but also included many other issues, and it was not cause of my poor braille skills, but cause of “the complexity of points of special attention”, that a negative recommendation for regular ed was given. And much in the same ways, I refuse to consider any simple paradigm about what “the blind” can do to be enough to base beliefs about my own assessment of my situation on, which is to be interpreted in two ways: I refuse to comform to the negative stereotypes about blindness held by some people for so far as I don’t meet them, yet on the other hand I refuse to adopt the “you can do anything you want cause the blind are no less than the sighted” attitude on issues where I’m
clearly not near-perfect. I don’t care what “the blind” can or cannot do - I care what I can and cannot do, and that includes learning about alternative techniques used by other blind people, but if that were enough, reading some alternative technique books would be all I needed to do in order to be as independent as anyone else, cause then I’d know what alternative techniques other blind people used.

How does all of this relate to preemies and the “rub alogn” issue? It relates on several levels. Firstly there’s the level of my not being just blind, but also being a former preemie. That, in and of itself, does not say much, but it does give me a reason to not be “just blind”. When I learnt about hydrocephalus last August, I developed a mini-obsession with its possible secondary effects similar to my former obsession with Asperger’s Syndrome, the only differences being that the information is much more scarce and that I forbade my obsession much quicker, namely in January, after having decided that caring about the secondary effects of hydro equalled comparing myself with another training home client with hydro and (subsequent?) brain damage, which I shouldn’t. Still, my obsession ended in the same way that my obsession with Asperger’s did: in my acknowledging that hydro or the IVH may not have resulted in my behaviour stuff, but that that didn’t mean that my behaviour stuff wasn’t there. As I wrote to a PREEMIE-CHILD member in January: if someone were to invent a disorder that was an exact description of my behaviour and stick it on me, that wouldn’t change the factual appearance of my behaviour.

On another level, preemie ethics relate to my wondering about my situation, in that what my situation is like influences my medical or societal value. I don’t like to say that, of course, as I personally don’t consider anyone to be of decreased value depending on their schooling, living situation, employment status or the like, but if one holds utilitarian views, it’s true. I am, in this sense, very sad that my father holds utilitarian views. He once said my blindness didn’t matter cause what he’d invest in me would have noticeable results. I till this day wonder what he means.