Reflections on My Education and Support Workers

On the Blindschools list, a list for people who attended schools for the blind, there’s a discussion going on about the positives and negatives of our education there. I’ve been thinking about some issues related to this lately. My parents and I have radically different opinions on some issues related to it, but when I don’t agree with them, they either ask in an ironic voice: “Do you want to go back, then?” to which the only intelligent response would be an agreement with whatever they say, or Mum tells me that people have indoctrinated me. Sure!

I started my education at a normal preschool when I was three. As far as I know, I did pretty well there. At least, not bad to the extent that my parents had to quit it. I continued preschool till I was four and then started Kindergarten (that takes two years here) at a normal elementary school. I first had a teacher called Bert, but I cannot remember much from my time with that teacher. Then, when the 1990/1991 school year started, I was transferred to Marianne’s Kindergarten class. That was mostly a nice class and I kept up reasonably well with some adaptations. There were, of course, some “horror assignments”, like a horrible colouring assignment and a spring drawing where you had to pierce the figures, which I found very frustrating.

I don’t know exactly when it was determined that I had to go to a school for the visually impaired. It must’ve been somewhere in late 1991 or early 1992. I don’t know if the educational evalation I had in early 1992 had to do with it. Neither do I know why I had to go to the school for the visually impaired at such a weird time – May 11, 1992. Why couldn’t I wait till the end of the school year? The only explanation my parents gave for my having to go to the special school, is that I had to learn Braille, which I didn’t till 1993.

Anyways, I went to the school for the partially sighted in Rotterdam (where I lived at the time). They have no Kindergarten there, so I started in a first grade-like class, which I officially started in the 1992/1993 school year. I started learning Braille in 1993, but that probably wouldn’t have happened if not a totally blind boy was about to enter the school in the 1993/1994 school year. Academics were taught at a low level and there was little attention for blindness skills.

In 1996, we were going to move to Apeldoorn and, as I had to stay on a school for the blind (I think the remedial educationalist advised us), I went to Bartiméus in Zeist. My parents disagree with anything and everything this school’s officials told them. In 1996, for example, a school social worker came to my house to talk to my parents about my behaviour problems. My first impression was that my parents had invited the social worker, but later they told me the man had invited himself. My parents also translated a 1997 report that spoke of my social, emotional and behaviour problems and my poor daily living skills as not saying that I was intelligent. Duh! They’d done a psychological evaluation and (indeed, without my parents’ consent) asked the lunch group staff about me. They also say that, had I been at a normal school, I’d have performed much better academically. I doubt it, for at a normal school, also the majority of children are going to go to low level high schools. I don’t say everything was great at that school – on the contrary. Many teachers (though not all) indeed denied my intelligence, but how can one see the difference between simple laziness underachievement and not being intelligent, if one has so little experience with academically able students? I didn’t show much effort, partly cause I was lazy and partly cause I was bored, but there were still things I was indeed poor at, like reading (cause I didn’t like it and hence didn’t practice often). Further, the folks’ comments on my behaviour and poor daily living skills were very correct. But I’ve always seen an overemphasis on academics in my parents, probably cause my schools underemphasized it. I hate it when my parents trivialize my problems.

Throughout my school career, my parents have however used the worried reports or statements about me as a means of getting me to get rid of a particular problem. They would/will then tell me that because I do this or that or because I am in such and such a situation, an [insert support worker or special ed folk here] might have to get involved, in a tone of voice as if to say: “And no herlsef respecting person would want a [relief worker or special ed folk again] to get involved.” In other instances, they’d warn me that due to such and such a circumstance I might not be able to go to normal school, have to be a boarder student or whatever. One particular example was in the summer of 1997: we’d just received the 1997 report, and Mum took me for a walk. She told me that actually Dad didn’t permit her to tell me, but I might need to board at the school for the blind. She then told me that it had something to do with my behaviour problems and theorized that they were because I had too many toys, and that one was only allowed to take some toys to the dorm. She wanted me to throw all my cuddly toys except for my favourite one, the whale Wally, all my dolls except for Roza, all the barbie dolls and all my Play Mobile away or give it to Sigrid. She said kids my age (eleven) were all interested in music or reading and that I should develop a taste for that so I could talk about that with them. I recognize the idea that for an 11-year-old toys and dolls are somewhat childish (although when we’d moved to Apeldoorn, the 13-year-old child who previously lived in the house had a whole lot of Play Mobile), but certainly not all my classmates only talked about music and books, and I have no idea what my having too many toys had to do with my behaviour problems. (Mum later pursued her theory by each time I threw a tantrum getting my dustbin, putting it full of the first toys she could get her hands on, and taking it to her room, leaving me the impression that she’d thrown it away.) I by the way threw all these toys away in 2001, just cause I had too little room for my other stuff.

Anyway, I completed elementary school on Bartiméus, and a new educational evaluation was performed in January, 1998. It was actually a second opinion to the one of 1997. My parents respected the remedial educationalist, who had also evaluated me in 1995 and 1992. This remedial educationalist did acknowledge my cognitive ability, but also realized that I had social and emotional problems and some other things, and as a result advised us to have me go to the school for the blind.

In 1998, I went to another school for the blind (cause my parents were dissaftisfied with Bartiméus), starting in seventh grade. There, especially the lunch group folks became a problem. All students that aren’t boarders go to “lunch group”, where they’ll eat in a group of about six students and two supervisors. This at that school, was a separate agency from the school, and so my parents didn’t want me to be a client there too. That didn’t mean I wasn’t allowed to eat there, but it did according to the school. I was very sad, cause all my friends went to lunch group. So I spent my lunch breaks hanging around in the school and doing everything and nothing.

Academically, there were fewer problems than at Bartiméus, at least where it comes to my parents disagreeing with school. Some teachers let me work at my own pace, and I liked that. With math, for instance, I’d completed nearly the entire eighth grade book at the end of seventh grade. Other teachers, however, only let me do more of the same boring exerciees, and that wasn’t really motivating. One particular problem was Dutch: I was bored by the normal assignments, and as as a result the teacher gave me a “homework book” that I could work on. But of course, partly cause of simple laziness and partly cause the other book was equally boring, I didn’t do much out of it. Plus, I hated reading so my book reports were always very bad. The teacher said that I didn’t work on the normal stuff, so why should she give me advanced work?

Throughout 1998, my parents sort of yelled at me so I could go to normal school. They thought that if only I worked hard academically and showed I could do the exercies excellently, the school would let me go to normal school. Well, they apparently again trivialized the social/emotional problems that had contributed to the negative advice.

In January, 1999, my parents took me to yet another remedial educationalist. I begin to believe that all they wanted was a recommendation for public school. This remedial educationalist had no experience with blind people, but he was fairly well-known. After his evaluation, he carefully said that it may be a good idea to have me get experience at a normal school, but it should be a gentlemen’s agreement. Dad, who had gone to the eval with me, was excited, and so was I. When we got the report, he again advised us to use the remainder of the 1998/1999 school year to get me to have experience at a normal school, which then could determine if I could attend a normal school. If it wasn’t, I should continue my education at the school for the blind, but with adaptations to meet my cognitive ability. My parents made an application for me to Gymnasium Apeldoorn (my currnet high school) and went for talks with the school officils twice. During one of these talsk, the special ed folk (the person from the school for the blind that reaches out to normal schools) also was present. Finally, on April 12, 1999, I was ccepted. It was arranged that I could have a “taste” of what this school was like on five normal school days in a seventh grade class. I wrote little reports on each of the days. I think it went pretty well.

On August 24, 1999, we went to get our schedules and I shortly introduced myself to my new seventh grade class. We made a schedule about who was going to help me get around. One sad thing was how long I stuck with this system: the entire year. I think now that it’d have been so much better if we’d terminated it earlier.

One very bad feeling I had throughout my seventh, eighth and ninth grade years was that everything had to go perfect or I would have to return to the school for the blind. In my seventh grade year this of course was the most real, grounded in statements such as “If it fails, it’ll fail within three months,” which by some teachers was taken too seriously. My parents always thought very much in black and white where it came to schools, defining my current high school as the perfect place to be educated. It was and still is my best school so far where it comes to academics, of course. And academically I’ve always done pretty well (except when I dropped my work in ninth). After all, it isn’t boring and I still have fairly high marks.

In the eigth grade, my socialisation with my classmates wasn’t going so well. On the evening of December 23, 2000, I talked with my mother. I don’t know what she wanted to make clear, but she argued that apparently it went so bad with me that Mr. De B. had called for a meeting with Stef (the special ed outreach folk) and my parents. She talked mainly about getting the spec ed outreach folk (think you Americans call it an itinerant teacher or something, but it’s not a TVI) involved as if that was one of the worst things that could happen. Well, they’d had a meeting in October where he was also present. (Meetings with the spec ed outreach folk are pretty irregular.) The issue, by the way, was pretty much settled in two discussions we’d had with the class (one of which I wasn’t present at) where stuff was explained and the other kids could aks questions and give their ciritque.

In the ninth grade, no-one became too much involved with my issues, but that was mostly cause I diddn’t explain about what was going on till June. In the tenth grade, the spec ed outrach folk only visited once, but I’m sure he knew at least some stuff about my issues. That year, the stuff with social skills became an issue, and when I once mentioned it, Mum was very saracstic, as if that wasn’t something one should address.

In eleventh grade, my parents weren’t really involed with my issues. Maybe they thought that as far as school is concerned, it was my responsibility. We – me, Mr. De B. and the new spec ed outreach folk (Stef’d left) – had four meetings that year. When the first was scheduled, I asked my parents if they wanted to attend. “Do we need to?” Mum asked. No, they didn’t, so they didn’t attend. They talked about Jan (the new spec ed outreach folk) as if he just wanted to come and no-one actually valued his input. I don’t agree. De B. also met with Jan once about Rome and with my parents once also. When Mr. De B. scheduled the meeting with my parents, Mum was very sarcastic, as if I couldn’t arrange my own stuff.

And now in twelfth, my parents’ dislike for relief workers and agencies in general and for agencies and folks serving the blind in particular has become a big issue to me. Firstly cause they’ve come to use the possible involvement of relief workers as a means of making me get rid of my problems increasingly often. My mother will for example tell me that I’ll need to go to a [psychologist, psychiatrist, whatever] if I don’t get rid of [behaviour or problem here], as if that’d mean that I would be given up forever. And secondly in relation to my future planning. Since tenth grade, I’ve kept two future planning files. One is the conventional one – after graduation, going to university to study English – and in the second one, I first want to go to the centre for the blind’s college prep programme and go to university in 2006. Mum says the folks at the summer programme have indoctrinated me. Sure! I’m probably still going to university next year, for at least then I’ll have my parents’ support. I’ve tried to discuss my ideas about going to rehab first with my mother on Thursday. Anyways, I’ll probably just go to university next year, cause then at least I’ll satisfy my parents (at least, as long as they don’t get complaints, I’m doing well, Mum argues). One has to apply at the IBG (the national agency that offers financial aid for students) ideally before
December 1st (but can be later). Still I’ve come to argue with my parents over the position of blindness folks, special ed and relief workers in general a lot of times lately. I know that it’d disappoint my parents if I was going to have a service agency or relief worker involved. I know they’ve needed to fight for my right to an approrpriate placement educationally for many years. I know that if Bartiméus had had its way, I would’ve been in their residential programme until I graduated from high school in 2003 and have been sent to Sonneheerdt (a vocational college for the blind) then. But does that mean that getting relief workers or service agencies involved is the end of the world? Does that mean that the only way to prove that I rub along is by pretending to do fine with no agencies or relief workers involved? Does it mean that if I try to make clear that I am not doing fine, I’m just trying to get pity? (Mum says that apparently it’s going fine at high school, cause she hasn’t gotten any complaints.) Does it mean that all my problems are just the result of laziness, to which the only remedy is telling me that if I don’t quit they’re going to call Sonneheerdt (or a psychiatric institution, depending on what caused the argument)? I feel so bad. I feel that because my parents have had to fight to get my abilities recognized so long, I need to hide my limitations. I feel that if I don’t just rub along at high school, go to university next year, etc. without getting service agencies or relief work involved, I’m devaluing their efforts to have me become an independent adult. I know that it was my parents’ goal to get me to become an independent adult. I know they never had an over-protective attitude. I don’t want to disappoint them by not rubbing along or by showing I have problems. I want them to be able to show off about how I’ve risen above the (stupid) spec ed folks’ expectations. But I can’t… Practically I don’t even resemble a 10-year-old and emotionally I’m walking on eggshells.

Astrid

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Blindness and Appearance

I went to the hairdresser yesterday and that made me think about the influence my blindness has on my appearance.

I could discuss that on two levels. The first is the very literal one – how I look different as a direct consequence of my blindness. That would only be an issue if my eyes appeared different, and hence the first time it was ever mentioned was in October, 2001. That was when a cataract on my left eye was suspected (I still don’t know if I had one then). In fact, at the time it was about the only thing I and my parents considered in our discussion of whether to have it removed or not. The autumn of 2001 was one of my my most appearance-conscious times. On Ocotber 5, I can remember, we had a school party and I was extremely upset for I thought my eye was looking really obviously ugly.

In 2004, when the current cataract was discovered, it again became an issue, but now it was mostly my parents’ issue. Mum told me that my eyes still didn’t really look terrifying. Did I care? To some extent I did, but there were other concerns. In 2001, I’d not cared about the effect it’d have on my vision, but in 2004 I did, as you’ve gotten to know by now. I found it very upsetting when my Dad asked the ophthalmologist about cosmetic aspects as a factor in the treatment of my cataract. He said that that was usually not tkaen into consideration.

The other level is the more indirect relation between blindness and appearance, where appearance is affected by the fact that one can’t see what one looks like. This has been a big issue for me over the years. When I was little, I can remember wearing “normal” clothes. Well, clothes Mum had sewn, but she did so for Sigrid, too. When we wore clothes Mum’d bought, we usually wore very similar clothes.

When I became a little older, I became very picky about clothes and especially about their tedxture. I loved track-suits and hated jeans. In early elementary, that wasn’t really a problem, I don’t know why. Maybe the kids didn’t really care about fashion, or whatever. But as I entered fifth grade and beyond, it became a bigger issue. I didn’t care too much, but my mother and Sigrid tried to persuade me to wear jeans. Mum’d take me into the clothes shop and ask Sigrid: “What do your peers wear?” Then that was what I was going to wear. In sixth grade, I wore my first pair of jeans (before that and after the track-suits I’d worn other types of pairs of trousers).

This practice of having Sigrid inform Mum about fashion and then Mum going to decide what I’d wear continued till I was about fourteen. I don’t know if I was aware of the reasoning behind this – that Sigrid was sighted and hence had a better idea of what was “in” than I did -, but I hated it. I don’t remember exactly how it ended, but one day I told Mum that Sigrid wasn’t going to dictate my clothes style anymore. Not that Sigrid wanted to – she’d become less self-conscious with regard to fashion since she’d entered high school in 2000 and joined the NJN (Dutch Youth League for the Study of Nature), a pretty alternative organisation, in 2001. But Mum still asked her to.

In eigth grade, appearance became a fairly big issue again, because my classmates had commented about it. I established “laws” for how showering, doing my hair, wearing clothes, etc. Appearance has never been such an issue of compliance as it was then; I didn’t really find it important, but knew it was to others so made rational rules of how to care for my appearance.

In June, 2001, I got an increased interest in personal appearance, and wanted to really look good, not just casual and surely not bad. I borrowed clothes from Mum and Sigrid and wore my own most stylish ones, and I had Mum or Sigrid do things with my hair. My classmates commented positively on it. But this wasn’t long-lived, and in the autumn of 2001 I started caring less. By the way, I did choose my own “fashion style” in 2001. I now wear all black and prefer some sort of gothic-like style, but also like other styles.

In tenth grade, awareness of one’s appearance was among the statemtns on the social skills screening list, and hence it became an issue again. Now, I couldn’t “consult” with Sigrid on the topic, cause she’d say “So what?” when I implied that her having sight had to do with her better opinion on appearance. And she could also at times even use me as a model on some isues of personal care, so I didn’t view her to be a good model in this respect. Mum, on the other hand, is fairly appearance-conscious. However, what I didn’t (and still don’t) like about her approach to appearance is her degrading manner when reminding me of a flaw in my appearance. One thing, specifically, is my hair. I have had long hair for years, and neither my parents nor Sigrid like that. All Mum siad when she saw me yesterday was: “Nicely short.” My hair isn’t short, but quite a bit shorter than it used to be. As if that’s the only measure ofbeauty in one’s hair! Anyways, When I was younger (I think also till I was fourteen or so) Mum used to do my hair. I’d only brush it and put in a hairpin. One occasion I remember was somewhere in 2002, when I came downstairs and the first thing Mum asked was: “When are you finally going to do something with your hair?” She said I had to have a haircut or even curl it or whatever, but no long hair. “I find it beautiful,” I said. “But it ISN’T beautiful,” Mum said as if it’sjust a matter of fact that long hair isn’t beautiful.

I think that part of this is due to the fact I didn’t take care of it enough. By early 2002, I’d long dropped my interest in my appearance, and when I didn’t have time didn’t even brush my hair. It was very long and the ends were dead. Sure I needed to take better care of my hair, simply cause that’s what one has to do with long hair. But my parents linked long hair to many other issues. I know that when it hangs in frot of one’s face, it interferes with communication, but I still don’t understand my mother’s reasoning when she wanted me to have a haircut the day after I’d not (wanted to) talk about an important issue that had been going on. Well, I admit that hair may hide one’s face, but it has nothing to do with wanting or not wanting to talk about stuff. I know that my parents don’t like long hair, but they make it seem as if it’s a fact that long hair is ugly, while when I care for it appropriately (which, indeed, includes having a haircut at times), I’ve gotten positive comments on my hair. Not from my parents, but what of this is a personal taste and what is real education about what looks good. I find this very difficult to sort out, for I know that I’mnot the most appearance-conscious person in the world, and further more that they “have eyes” (as Mum phrases it) and so probably know what looks best.

I’ve always wondered about the importance of wearing what’s “in”. At my school, folks that only wear “in” clothes are said to be “hangers on”. On the other hand, when I read articles that deal with social skills and students with visual impairmetns, it’s always emphasized to teach kids what’s “in”. Aren’t there such things as fashion styles? I used to think that if it was really ugly, it wouldn’t be sold in shops. Later, I got an idea about what looks good for teenagers nd for grannies and the people in between. But still I wonder why the shops sold track-suits in children’s size in normal clothes shops (no sports shops or anything) when it was presented as a fact that they were ugly.

Astrid

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Memories of Sight

This morning I went into the kitchen. I sat down and asked Dad if there was coffee. I felt over the table for I don’t remember what, and my hand hit the coffee can. I felt weird, cause our coffee can is dark blue and the table’s light brown. Plus, it’s so large and it was only a few feet from my eyes. Why didn’t I see the thing? The contrast was pretty high and the object is quite big. I used to see that, right? Or didn’t I? I often wonder if I pretend I could previously see things that I can’t anymore. I don’t know why I seem to be doing that. But how long has my vision been stable? Is it? Can I judge what I used to see at some point? I clearly have memories of what things much smaller than a coffee can look like, but having these memories doesn’t mean I was able to see them last year. I even have a memory of once lying in a chair in the garden. The sky was extremely blue and it was sunny. As I looked up to the sky, I saw a black dot crossing it. In my memory, it was a plane, probably flying very low to land on the nearby airport. But I have once heard parents speak about their kids that could see planes in the sky, and all the comments were that these kids had a huge amount of vision, so over the years I’ve come to think it can’t have been a low-flying plane. I, by the way, was about six at the time of this sight. When I was eight and just had had surgery, I told Mum that perhaps I could be able to see a plane in a blue sky again. I never could (again?).

Speaking of sights and memories – I wonder what this year’s fireworks will look like. I’m not even sure if I will be able to see them. I have not gone to watch them the previous years, but my memories are extremely vivid. Likewise with the moon. I think I’ve seen that quite a few times, but the last time (as far as I remember) was when I was about eleven. I pointed at a “light in the sky” and Dad told me it was the moon. Pretty interesting.

Astrid

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Thougfhts on Wanting to Discuss Some Things

I don’t know what I shall write about. There are a lot of things I want to write about, but I cannot really get started. I feel I’d be whiney if I did. There are a lot of issues with my blindness that I feel I need to sort out, but I don’t know where to begin. I started in September with writing about this stuff, but I mostly quit that. Plus, there are things I want to write about that are not directly related to my recent experience of vision loss, but that I have gotten to think about as a result of my vision loss stuff. Cause that issue had me thinking about a lot of blindness related issues. Not that all of them were/are bad, but still. I feel like writing about some implications of my blindness, but I don’t know how to. It’s not really that I feel ashamed of these things, but I don’t know how to get there, which partly indeed relates to my not wanting to croadcast, but also… well as I said, I just don’t know how to bring some order in what I want to write about.

There are also these issues that I *am* ashamed of. I’ve been wanting to be open to some people about my “formally recognised issues”. The behaviour issues, I’m speaking about here. Some of it I could attribute to blindness or to “just being an introverted person”, and these are the things I’ve always been fairly open about. The social situations thing, for instance. But by my behaviour issues I mean those things very few people would write about. I’ve rarely met people with these behaviour disorders or emotional disturbances. (I’m not meaning the formal diagnosis of behaviourally disordered or emotionally distrubed here, for clarity’s sake, but just people with similar emotional and behavioural disorders.) I don’t know why this is; I’ve often met parents who expressed these issues about their children. I know there must be teenagers with similar difficulties to me. In fact, I’ve known some throughout my teens (since early 1998, when I started thinking about it, I have recognised similar problems in other people), but I’ve always felt held back from talking about these things.

But I would so like to discuss this stuff with some of my acquaintances. I want to explain the extent of these problems and to make clear why they are so limiting (as I said on Wednesday). Many of my relatives don’t know the extent of the issue, and I’m afraid they’d reject me if they did. Certainly, a publicly visible diary isn’t the place to open up about this stuff. I sometimes think I’ve already gone too far in some writings. Like with the blindness stuff, I don’t want to broadcast. But with this, I also fear to be let down by people if I’m open about this stuff. People either don’t recognise the seriousness of the problem, or they don’t recognise the impact it’s having on me and how limiting it is. And that’s why I feel ashamed to be open about what’s it really like tho live with this issue. I don’t like the idea of theoretically the entire world reading about this part of me, so I’m probably not going into this much further here.

Astrid

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Political Thoughts

I had an interesting discussion with my parents yesterday. It was about politics, religion and the left-right spectrum. I think that it isn’t really all related. A person may be progressive on some topics, but conservative on others. I myself say I’m a liberal on some topics (like gay rights, immigration and freedom of religion), a socialist on others (like labour and social security) and a conservative on yet other topics (like abortion). And on yet other topics, I’m not sure what my position would be called. Like, what do the political movements say about war? The war on Iraq or the Israel-Palestine conflict. The left-wing parties share my opinion on these topics, but I
wouldn’t really consider my opposition of the war on Iraq, for instance, to be liberal or socialist. I agree with Michael Moore on many of the topics he discusses, but I agree with conservatives where it comes to my pro-life standpoint. (You often see that most leftist folks also support abortion and euthanasia.)

I don’t really think one can say he’s a socialist, a liberal or a conservative. I’m a member of the Socialist Party and support many of its opinions – some of which aren’t strictly “socialist” -, but not all. And if I were an American, I’d probably vote for Kerry (if not, then for Nader, but he’s no chance of becoming president), but that doesn’t mean I agree with all his statements. With some, I don’t agree at all.

Mum tried to solve all societal problems by her statements: “Everyone should be free to do with his or her body and mind whatever he or she wants, as long as he or she doesn’t limit others in that freedom.” So, what do we do about Muslimas wearing veils? They have the freedom of religion, but they are distracting to others at times. Mum wanted to forbid veils then, cause they restrict communication. She engaged in a lengthy explanation of the importance of eye contact. I know, but it’s still a cultural principle. In other cultures it’s really rude to look someone in the eye. And what about a conservative Christian who discriminates aganst women or homosexuals? He has freedom of religion, right? But he’s also discriminating. Both are in the Dutch constitution. We still have to set priority values.

Astrid

Ps – I found a New International Version (NIV) of the Bible. That’s better-known than the World English Bible.

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Thoughts on Using and Appreciating Vision

Last Monday, I walked to the shopping centre with Dad. He had to discard garbage, and so we visited the place where the garbage containers are. “I see lots of containers here,” I said to confirm that I knew that we were in that place. (I cannot remember the exact context of my comment.) “If you don’t see them, you at least hear them,” Dad replied. This little piece of conversation left me thinking. The first impression I’d had about the lay-out of the environment had been visual and I expressed what led me to know that I was at the place where the garbage containers are. Was that weird, when Dad asked me about it?

On the other hand, I’ve noticed lately how I’m accentuating vision. I did that in 1998, too. I can remember once at Vlieland in 1998 asking my parents if I was allowed to tell them what interesting things I could see. The things I think were not interesting to my parents. I don’t know why it was that I kept pointing to things I could see. Maybe it was because my parents and Sigrid also did that.

Is it bad to point to visual landmarks when navigating or to tell people of the interesting things I see? With the first, it’s a reality that I use my vision for navigation (along with alternative techniues, of course). I do get clues abut my environment from visual landmarks. With the garbage containers, the sight of them made me realise that I was at the right place. Of course I was, cause I followed Dad.) Visual landmarks are sometimes easier to notice, cause with tactual landmarks, your cane by chance has to hit it to feel it and so you have to be within a few feet of the object. This is true for seeing some objects, too (I cannot trust my eyes in avoiding poles, for instance), but some objects I can see from a distance farther than my cane can reach. In this respect, auditory clues are for me more reliable, cause one can also hear things from a distance and my ears are better than my eyes (obviously), but not all objects make noises. I don’t know about the garbage containers – they should’ve made noise also, at least when people threw things in them.

As for pointing to interesting sights – I’ve quit doing that, for I’ve long realised that all the things I can see, others can, too. And if they’re interesting, the sighted people will point to them. I know that showing delight in what I see, to many people equals being poorly adjusted to not seeing. And I’m beginning to realise how accurate this is. I do use my vision, but taking delight in just the seeing itself to me equals maladjustment. Appreciation? I don’t knwo…

Astrid

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More on Coping with Blindness and Behaviour Problems

Most of my tantrums start out over things that are somehow related to my blindness, but does that mean that the issue is a blindness problem or is even related to blindness? I am not sure. I know that I have a very bad attitude about my blindness. I have problems with blindness is many ways. You may even say that my feeling of not rubbing along anymore is a blindness problem. But I’m sure that in itself my behaviour problems are not blindness problems. There are genuinely problems contributing to them that are not related to blindness. My difficulty understanding social situations is, as far as I know, not a blindness problem, cause with many situations it later appeared that I could’ve observed the correct behaviour. And nor is my getting easily frustrated a blindness problem – even less so, cause I’ve read some publications that state that blind people have difficulty observing others’ behaviour, but no-one says that blind folks have lower frustration tolerance.

I do not want to use blindness as an excuse for my behaviour problems. That’s not the reason that I seem to be trying to reduce it to a blindness problem. I know, however, that I’m actually doing that, especially after I quit my obsession with Asperger’s Syndrome as a possible label of mine. I know that each time I notice that it can’t be a blindness problem, I’ve felt disappointed.

It’s for two reasons that I find it difficult to acknowledge that it’s clearly more than blindness that contributes to my behaviour problems. The first is that, if it isn’t blindness, what, then, explains my problems? I don’t choose or want to behave poorly, but I don’t want to just “accept” my problems the way they are. I want to change them, but I don’t know how.

Another thing is that I don’t want to be limited any more than the blind people I know. And while my social/behaviour problems are very limiting at times, I like to think that many competent blind adults once had them as well and still learnt to live normal lives (with proper training and opportunity, of course). Having known how limiting my behaviour/social problems can be, I’ve always hoped that still I could somehow learn to overcome them. And to me, attributing them to blindness is the only way that would give me that hope that I can become equally indpendent as the other blind people I know are. I don’t know why I have that feeling as if attributing it to blindness is the only way to live normally despite my issues, but I know that people who realise I’m not a “normal” blind person have often virtually given up on me. Maybe they thought I didn’t want to become “normal” or something.

It sucks at times. I have no additonal disabilities to blindness as far as I know, but it would be naive if I tried to explaine everything by my blindness. I hope that, even if it isn’t all blindness, I will once encounter people who won’t give up on me and who are willing and able to help me learn to be independent (I know that my behaviour/social issues have often stood in the way of that). I know that I won’t become independent just when people keep insisting I should be. I know I have been trying to rub along for so many years, but having to be “normal” without clearly having the skills to do so is tiring. And I know that this has contributed to my recent behaviour issues, and I know also that it is not all that. The folks at the rehab centre were fabulous at explaining virtually everything by my blindness, an implication of it, or a problem I had with it. The experience I had there gave me hope that, even though I think that I cannot explain everything by it, I may be able to learn the skills to live normally when I learn proper use of alternative techniques nd I adjust to my blindness. The only problem, then, is that if I go on like I do now I won’t kearn to adjust with my blindness. And I have to rub along, and how else do I appear to be rubbing along than by going on like I do now?

Astrid

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Very Frustrated Rant about Having to Rub Along

I feel really bad. All sorts of issues are spinning through my mind again, and they’re driving me crazy. I threw several horrible tantrums lately, and all started out over very little things and ended going about issues of blindness, having to hold on, becoming independent, and the question if something more than blindness is wrong with me. There are situations when I can explain all my issues by blindness stuff, but I well realise that my actual behaviour is not a blindness issue. It may be a reaction to it, but the way I react is not related to my blindness and is a problem in itself. I know that I cannot magically resolve all my problems by adjusting to blindness, but I know it would help a great deal if I learnt those “skills of blindness”. But I don’t know how I’m going to learn the skills of blindness, for my parents can’t teach me (they say, sometimes blaming my blindness and sometimes blaming my behaviour issues) and I’m busy enough just holding on. Oh, that doesn’t appear so of course, for academically I rub along fairly well (I have confidence in that this test week also went well), but… I don’t know… I just can’t go on like this… And at home… The folks expect me to move out “when she has enough of travelling by train”. As if it is that easy. I cannot even handle my current duties! But I have to hold on, to pretend to be fine, cause Mum wants to show off about her high school senior. She said that she also shows off about her 10th-grader, and that she isn’t just keeping up either (Sigrid repeated 9th and has real academic problems with some subjects). First, she shows off about Sigrid a lot less than about me, and second she doesn’t include her own difficult fight for making clear Sigrid’s abilities in her showing off – logically, cause she didn’t need to fight for that as much as she had for me. I feel pushed to just “rub along”, no matter how this is accomplished. If I graduate from high school this spring, that’s great – especially for beating the special ed folks’ ideas about me – no matter how much difficulty I’ve had there. (Of course it’s always good if a person graduates form high school.) We’ll just beat the low expectations the special ed folks had of me. Yeah, sure, but they don’t care how I’m doing so. And if the girl who, according to the special ed folks and the remedial educationalist who evaluated her in 1998, should’ve been educated on a school for the blind due to “the complexity of points of special interest”, goes to university next year, she’ll have beaten the negative attitudes others had about her, no matter how she’s doing. No-one seems to care that I don’t really rub along, because besides telling them, I have not shown in a way that’s significant enough that I don’t. What *is* going to make clear that I really can’t hold on?

Astrid

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More Thoughts on Independence and Vision Loss

I wrote on Friday (well, Saturday night) about amount of residual vision and its relation (or lack thereof) to independence. I realize that there’s no relation – often, it’s more about the right balance between visual and non-visual techniques -, and that using one’s residual vision too much and not relying on alternative techniques may even be harmful to one’s independence. I have personal experience with it. No way that I was independent when I didn’t use my cane, an certainly I wasn’t safe. However, for some reason I still feel bad about having lost the sight to depend on visual techniques. For some things, I’ve not found non-visual techniques yet. Like, how does a blind person roller-blade? I used to do that until about 1998 or 1999, but feel that now I canot do it safely anymore. (Could I do it safely then?) Not that I explicitly quit it becaus emy sight decreased – I probably just didn’t like it anymore -, but now I feel the lack of sight is a factor in my not re-stating it.

Also, I know that this is incorrect, but I have always valued visual techniques over alternative ones. At times, it seemed that when not using my cane or when trying to use magnified text instead of braille, even though it was inefficient or even unsafe, it was at least better than to accept the “blind” technique. After all, I wasn’t blind, only partially sighted. I can remember from that 1998 remedial educationalist’s eval, that I said I didn’t need a cane. Well, I immedately used her as a sighted guide when we went to the testing room. But yeah, it seemed to be better than to admit one’s blindness on using a “blind” technique. And at times, I still (or should I say “again”?) feel that I was somehow better years ago when I could still to some extent pass, than I’m now that I’m nowhere without alternative techniques. I keep saying “alternative”, and Kenneth Jernigan (former presidentof the National Federation fo the Blind) uses that term, to imply that it isn’t a less valuable technique than the “sighted” technique. I keep arguing that in my articles and anything to sighted people, but I myself don’t really feel that way.

I always was pretty visually oriented, or maybe I pretended to be. I know that that’s had an effect on my learnign alternative techniques – I simply resisted them. And there are still these things that I do visually and wouldn’t know how to do without my sight. That’s scary, for at some point I’ll lose my vision. I had a conversation with Sigrid on Monday. It was about cane use and how some blind people could hear from the sound their canes make on the ground if tehy’re walking along a building. I cannot hear that. “But I can see it,” I laconicly said. “You will not always be able to see that,” Sigrid responded. I know, and it scares me. “Oh, then I’ll find a technique to do it without sight,” I said, equally laconicly. I maybe will. After all, I also found out how to feel if my alarm clock is on by feelingf for the switch’s position when I couldn’t see the little, red light that indicated it anymore. Still, it’s scary to realize that at some point I’ll not be able to use visual techniques anymore.

It also has to do with that sense of competition that I wrote about a while back. Losing sight, to me, equals losing independence, because I always viewed totally blind people as less capable than me. Many weren’t, but still the fact that they had less sight, made me think that way. And it still does, at times. Now I don’t compete as openly as I used to – the competition is more individualised. I don’t try to show to the totally blind people that I “compete” with them. I don’t want to look down on them. I know that many are more capable than I. I know that non-visual techniques are often more efficient than visual ones, for a person who has so little sight like me. I realize that by this incorrect “competition” I’m only cheating on myself. It feels so weird.

Astrid

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A Conversation with a Cab Driver

On Tuesday, I went to the shopping centre, and at some point I got a bit lost. Not really so that it was a problem to me, but it was to passers-by. One of these was a cab driver, but I didn’t recognise him. He called my name seveal times, but I didn’t respond. Pretty curt, I know.

Then today that cab driver drove me home from school, and he asked if I were angry with him. I explained I hadn’t recognised him. Then, we got to speak about going to the shopping centre. He asked if I was on my own. I said I was. Then the cab driver said that he found that good for me, and immediately thereafter asked if I were totally blind. No, I have a very little bit of vision, I explained. He stuck with his compliment, he said. Well, he shouldn’t have, and my vision certainly shouldn’t be a determiner of that. But there was too little time for me to explain that there are totally blind people who are more independent than I am and that most blind people can shop independently.

Afterwards, I thought over the cab driver’s comments. There’s no doubt that it is *not* good for me to be able to go to the shopping centre independetly – there are so many blind people who do that daily. I don’t like these compliments, because they imply that for a blind person (which equals a helpless, dependent creature) I’m doing well. I don’t like to use that previous phrase, for it is stronger – certainly when it is used as a general statement to indicate society’s attitudes about the blind – than what I usually observe. But now, it was correct: I was the exception that proved the rule of blind people being helpless. While I am more helpless than most blind people!

And as for the question if I were totally blind – I do use my residual vision. In fact, when my vision deteriorated (especially in 1998) that had a great impact on my orientation and mobility and hence on my independence. I have always been fairly visually oriented, and I still use my residual sight for orientation and mobility. But it frustrated me that this cab driver generalised so much, making sight a determiner for one’s ability to travel independently. I think that’s incorrect. In fact, I get the impression that often partially sighted people who mostly use sighted techniques are at a disadvantage over the totally blind that are well-adjusted and proficient at alternative techniques. When I still found I had enough vision not to need a cane, I was much more dependent than I was when I started using a cane in daily life sutations in the autmun of 2000. (Oh well, I assume I used a cane when going out with my mother before, also, but not at school and at summer camp.) I think that partially sighted people should use their residual sight, but when they’re more efficient they should also be able to rely on alternative techniques, because they aren’t inferior to visual techniques.

Astrid

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