Astrid’s Journal

I was thinking over my opinion on expectations of blind children this afternoon. Well, I’ve been thinking it over

a lot over the past few months, but still. I found myself criticising the NFB

philosophy to Sigrid last Saturday when we were going to the mall. I told her that blind people aren’t poor,

helpless people, as many charities seem to think, but that they aren’t just sighted people, as the NFB seems to

think.

This afternoon I was thinking over this statement: why would so many blind adults be members of the NFB and hold

this philosophy, if it weren’t true? Then this evening I read over a statement I made on the BVI Bridge message board. I can’t find it, but it stated that blind children are children first, and blind second. This is what many blind adults and parents of blind children say, but I seem to interpret this somewhat different than many folks. Others define it as that blind kids are just like sighted kids. I feel that some blind/VI kids may be just like their sighted peers but some may actually have more difficulties.

Often, as I’ve stated before, this is said to be caused by either too low expectations or an additional

disability. As for the expectations thing, I’ve always said and thought that if too little is expected of me, I’m

happy my parents don’t know. In some ways those folks may be right - for instance, I’ve done very few household

activities over the past years, most that I did being on my own initiative cause I wanted to practice ADL skills -,

but in many ways my parents (at least, that’s how I feel) expect me to do the things the articles say they should

(which is, treating the child equally you would a sighted kid the same age, which is sooo frustrating at

times…).

And as for the additonal disabilities: do the folks want every blind child who’s more difficulty than the

so-called average blind child to search for explanatory labels, like I did? The first months of my search for info

on autism spectrum disorders my feelings about the topic had nothing to do with blindness - I just was called

autistic by my Dad and it appeared I recognised the symptoms of mainly Asperger’s Syndrome. I didn’t think of the

issues surrounding its comorbidity with blindness until much later, when indeed I started thinking I must have an

additonal disability (AS?) because I apparently didn’t understand the things normal blind kids were supposed to (the

social skills things, mainly, but also other issues).

I can’t say the repetitive statemsnts on blind kids being just like sighted kids made me wonder if I had an

additional disability - well, they did make me wonder about that, but I already suspected an ASD and those

definitions only made the search for labels worse. I don’t say other blind folks like me will get to search for

labels (I don’t even know if there exist blind folks with my difficulties, and probably they don’t read Future Reflections).

What I do want to say, is that these rigid statements about blind kids being normal kids except they don’t have

sight and otherwise being over-protected or having multiple disabilities (boy, and those that actually have multiple

labels are poor, little children!!!), totally ignore the “blind children are children first, and blind second”

statement, cause a child will be defined by her labels and not by who she is!!! I wish folks wouldn’t be so rigid:

this child is only blind, so she must be able of… while if the child’s difficulties got a name, she suddenly was

multi-handicapped and sooo poor… I’ve wondered aboutt this along my way to finding info on the impact of blindness

on development, my participation on blind-related mailing lists and in relation to my AS suspections…

A few months ago, someone at the BlindKid listserv

asked what one could expect of a blind former preemie. What a stupid question!!! She cited a situation in which a

girl had refused to pour with some can, because she couldn’t carry it cause she was a preemie. Well, such a

statement would be bad because one shouldn’t use one’s labels as an excuse for one’s difficulties (although those

rigid statements make it VERY attractive!), but it absolutely made no sense to think “a blind preemie” should be able to pour with such a can. (By the way, the whole discussion was in response to an article featuring a blind, former preemie boy who had a musical talent, but also had some dev delays, on which everyone immediately focussed, ignoring his abilities!)

Hmmm… am I ever rambling! But it sometimes is sooo frustrating… I know I’m doing the exact same I say one

shouldn’t do - on looking for info on difficulties blind kids may have and on looking for info on disabilities like

AS, I’m actually using my blindness or a possible additional label as an excue for these difficulties -, but it’s

sooo frustrating to have everyone state how able blind folks are (and by the way the BlindKid folks always look to

the difficulties kids, featured in articles have: I’ve seen no article being discussed about which the folks were

content), while I’m not… and there seems to be nothing that could explain these difficulties…

Astrid

I do usually rely on my cane for O & M, cause I know I can’t trust my eyes
anyway (whether sunny or cloudy or whatever weather). What is annoying to me
is when I try to concentrate on cane use I’m distracted by sights like
shadows and changes in colour.

Not that I don’t use my vision when travelling with my cane. I grew up being
able to use my sight quite a bit for O & M and I wasn’t taught cane travel
wearing blindfolds (instructor always said I used my vision too much). But
since I’ve noticed how I’m confusing certain things (like thinking a shadow
is an obstacle) I’ve relied more on my cane. So it’s not really that I can’t
see thingsen it’s sunny but more that the sunlight, shadows etc. are
annoying when I’m trying to navigate.

Astrid

So, we’ve corrected the first half of unit 5. We got less far than I’d hoped, but that was also cause I was a bit late and Mrs. Van O. had to leave earlier to supervise the exams.

At times, I felt pretty weird, when Mrs. Van O. sat next to me, looking at my screen and reading the answers to me. On the first text of the unit I’d done rubbish - really nothing was correct. So at times she made remarks like: “So you haven’t filled that in.” It came across as if she found my work to be done unseriously - which as I said had been true at first, but I found I’d corrected that pretty well yesterday. But as she kept mentioning the need for correcting the things, I understood she just still thought I’d need to be convinced of that need - which ain’t true, cause I just had well these weird issues and would’ve loved to correct the things if I hadn’t needed to do such “difficult” things (ie. go up to Mrs. Van O. to ask her for assistance.) Anyway, we arrived at exercise 12.

I just took a look at my French1, which I’ll be correcting tomorrow. I’d expected I had done units 5 and 6 pretty seriously and unit 8 not so, cause I wouldn’t get a mark anyway. Surprise! Unit 8 appeared almost totally serious and units 5 and 6 were full of skipped exercises and quickly - carelessly - answered questions. How weird. I hope Mrs. Van O. finds it to be done seriously - one never knows how she determines that -, cause I find otherwise I’m being really stupid.

Well, now I’m going to read some pages of Oeroeg (the book I’ll read for history) and then go to bed. I won’t go to the economics V-period tomorrow, cause I feel I’ve enough free hours (although I planned to get my V-card to be over-full this week to compensate for the two weeks I got almost no V-periods). By the way, there are four teachers who skip their V-periods (well, they decide they’re normal classes). Mrs. U. says that last period we had an extra V-period (which wasn’t an actual V-period, cause it was Thursday the first hour and no-one, including Mrs. U., showed up) so now she’s allowed to skip hers. How weird. But yeah, I seem to be the only student who tries to completely fill in her card. During the second period of the school year I didn’t get a V-card till after four weeks. So I assumed we needed to follow six V-periods (three in the multimedia centre and three at a teacher’s) and went to a completely useless general science V-period every week only to complete my imaginary card. Then after four weeks I got the actual card, which stated we needed only four V-periods (two in the multimedia centre ant two at a teacher’s). So there remained one very relaxing week!

Astrid

Oh no! Textbook blues again! I feel sooo bad…

A few weeks ago we started with the theme of philosophical anthropology in philosophy class. I had the textbook and, as it was shortly after I’d noticed my Latin book wasn’t complete (which I could’ve known before, cause the discussed chapter was in the table of contents but not in the book itself), I checked the table of contents and the book: everything which was in the table of contents was in the book. Those were chapters one till three, but as they were pretty big chapters, I assumed we just had three big chapters instead of six small - which is usual, but each book is organised differently (we use a new book for every new theme in philosophy class).

So we started with the introductory chapter one and then continued to chapter two. We worked on that chapter till last Wednesday, which was our last class till today. We also had no extended study plans - we got study plans per week until now. And as I came into class today, Mr. Van Poortvliet (that’s the teacher) suddenly started speaking of chapter four. Huh? That wasn’t in the table of contents in my book and as far as I knew not in the book itself either. I checked again: indeed, the book ended which page 93, while chapter four started at 95. I told Mr. Van Poortvliet about it. But as I could remember Mum saying something months ago at the beginning of this school year like the first volume of the book had arrived (although I could remember asking Mum if the book was complete and she saying yes), I decied I would check Mum’s computer for the perhaps complete version of the book. So I checked it out, but the book on that computer also included only chapters one till three. Boy, why do I find out about this only now??? With geography I found out I was missing chapters of one book and had the wrong book instead of another (the latter one being due to a mistake in the book list), already at the beginning of the school year (cause the teacher mentioned all required course materials at the beginning of the school year, but we have two different philo teachers). And with the English exam bundle t was the same with part two missing (the part containing the actual exams). Now I didn’t know that chapters four and five even existed until now… It wasn’t in my table of contents, it wasn’t in my book and Poortvliet hadn’t mentioned it till now… (I don’t have a print copy of my books.) How chould I have known??? I also asked Poortvliet if the book list said something about what chapters would be used, cause that had caused the library for the blind to send only part of one of my geography books. He however said that wasn’t the case. It’s so frustrating… And I feel bad cause it’s already the end of the school year and I shoul’ve known that chapters were missing long before (not that I know how, but one never knows what mystical skills one’s supposed to have).

Astrid

ps - found the economics book, which I suspected to be missing. But I now finished the first and only graphics volume for math, while I’ve still one and a half chapters left that I need graphics for.

Today I had French1. I worked on the new unit 9 and suddenly realised how easy French1 actually is, while still being interesting. It was my first French1 activity since May 13. (Admittedly, I hadn’t worked on the new units yet.) The text we read was pretty cool. It was about an organisation that tries to establish education for girls in the developing world.

I also asked if the book I want to read (Le marchant des masques by Henry Troyat) was right and it is. We also did literatur. We do our entire literature ting this period on Victor Hugo. I’ll get an alternative test cause all the handouts aren’t available on the compute.r I’ll have to look up info on Hugo from the Internet and create a summary of his life. Then I’ll have to hand it in to Mrs. Van O. and we’ll talk about it for a while. Pretty interesting. I’m at least happy that I do know by ow what’s expected ofme - as opposed to all the confusion with the English literature test in February.

Astrid

Yesterday I heard on the news that Michael Moore has won the Golden Palm at Cannes’ movie festival. I like his critical judgement of George W. Bush and the other folks involved. I’m way against Bush - not that I’m pro Kerry or any other democrat, as they’re still very conservative, but still. Fahrenheit 9/11 is about Bush’s Iraq policy.

I’ve been looking around his webpage yesterday. Pretty interesting aritcles on his must read page. Not all his own thoughts, but articles from well-known newspapers like the Guardian and Washington Post. I knew of the abuses n Iraqi prsons from the news, but as I’m reading these articles it’s even more disgusting how a a modern, civilised country like the U.S. can have its soldiers do such horrible things. And they said Saddam Hussein was rerrorising his people!

Sigrid watched the documentary Bowling for Columbine for her geography class. When she told me of the film. I didn’t know it was one of Moore’s productions (I hardly ever had heard of Michael Moore), but it seems pretty interesting. I’ve never seen any of his films, but might do so sometime.

Astrid

Yesterday we had rice, chicken wings and vegetables for dinner. As Dad put rice on my plate and put chicken, chicory and the other vegetabbles over it, I thought about Barbara Pierce’s article Please Pass the Manners, and I tried to cut the chicory by myself. It went pretty well. Then, when I started eating, I felt pretty embarassed as I thought over my (according to the article and to what people used to say to me at ICC) disgusting table manners. And even if they aren’t disgusting (ie. if we eat something I don’t spill all over the table), my table manners are still inappropriate.

At first, the messages Pierce’s parents gave her sounded familiar. Countless times have my father, mother and the folks at special ed reminded me not to eat with my fingers, to bring the fork or spoon to my mouth instead of my mouth to the fork or spoon, to chew with my mouth closed, not to eat from the dishes but to put the food on my plate first, to eat the first piece I touch, etc. etc. I can even remember some argument with my Dad which I had sometime about two years ago, when he insisted I cut my fried egg with a fork instead of a knife, telling me I “indeed was pretty different” (because I cut an egg with a knife?). This, I remember was a pretty confusing experience, as Sigrid (my sighted sister, whom I look up to as my role model in situations like this) said she cuts eggs with a knife, too.

Then, Pierce goes on highlighting the consequences bad table manners have, explaining that, as she concludes, “the blind person who puts off other people with poor manners or bizarre contortions in order
to see what is on the plate or serving dish will eat alone or only with those too gauche to object”. This never happened to me, but I do get remarks on my manners when eating with relative strangers (ie. everyone other than family). I can remember at ICC-02 Arend and Martijn (two fellow studnts, both partially sighted) commenting on my spilling around my food and making a total mess all over the table. They were nice, friendly people, so I should assume they didn’t say it to tease me.

And in Rome apparently my table manners weren’t so disgusting that high school students would explicitly comment on them. Still, the comments I did get were pretty embarassing. I don’t think Gijs and Thijs were trying to be mean, when they counted the pieces of macaroni I got on my fork during the first evening’s dinner. For the most part, no-one made any remarks about my eating, but I just had enough common sense to feel embarassed. For instance, Sophie was so helpful to cut my pizza for me, but again this was an occasion I appreciated, but didn’t feel I should appreciate, cause a blind person should be able to cut one’s own pizza.

Then Pierce continues to wonder what causes parents not to teach appropriate table manners to their children. She says parents are so happy their child finally uses a spoon, that they forget that the child should graduate to a fork, or that the parents don’t notice that sighted kids of the same age are making less of a mess. I don’t know what my parents did to make me get used to silverware (except for the countless reminders: “dn’t eat with your hands!”), and to what silverware. I use a spoon most of the time right now (which Pierce criticises by stating “too many blind people arrive at adulthood without having mastered the fork”). I can use a fork for big pieces of food such as meat (although I can’t cut most types of meatby myself), but one shouldn’t put me in an Italian or Chinese restaurant with only a fork and knife to eat the rice or pasta with. (Boy, was it ever embarassing to ask those folks in Rome for a spoon!) I can remember my parents and the folks at sped schools trying to get me used to a fork, and the first time my Mum asked for a spoon at a restaurant - “because she has difficulty eating with a fork” - was when I was about fourteen.

I must say that I did reject some table conventions - and my parents accepted that - for easiness’ sake. Mum now even demands I eat with my mouth over the bowl of yoghurt, cause I’ll otherwise spill it. The convention seems to be to bring one’s spoon to one’s mouth instead of the other way round.

Asfar as messes go, Pierce does not state how parents are supposed to teach their children to make less of a mess, and I don’t know what my parents did to reduce the mess I was making. If I look at the table after dinner, I notice that the place I sat is filled with food that I spilled. On my parents’ and sister’s place, there is some food on the table, but only a little. I’ve virtually no idea of how to decrease the “disaster area”.

Then Pierce continues on making a distinction between those behaviours thar are arbitrary social conventions and those that really prevent distraction or offence. I can remember clearly all the conventions the folks at sped school had for how to cut one’s loaf. I don’t know a thing abut why I had to learn those conventions - after all, when my Dad cut my loaf for me, he cut it differently than how I was taught it should be cut, so then it’d probably not matter.

The following part of ierce’s article focuses on setting the table and mapping the dining place. I’ve often set the table, so I have some knowledge of how it “should” be set - ie. the knives and spoons at the right side of the plate, the fork at the left side, the places a napkin can be put, etc. I’m not particularly lost when sitting in a restaurant - I know where to lok for the cup, the knife, the napkin, etc.

Pierce continues to speak of locating the food that’s on the plate. I ate with my hands instead of with silverware for a long while (I can remember how hard it was for my parents to break that habit of mine, haha), so I’ve probably been locating food by touch as well. I use my hands for dinner a lot less frequently, but still at times I do it. (shame) What I don’t agree about, is Pierce’s dislike for the clock-wise description of what’s on one’s plate. If I know what will be on my plate (eg. yesterday it would be rice, chicory, chicken wings and small vegetables such as onion rings), I can usuall identify individual foods using my fork or spoon. However, at a restaurant, I always like to know what’s on the plate and where it is located. If I encounter some things that easily roll off the plate, that’s pretty annoying when I didn’t know we had for instance pommes parisiennes. I don’t know why on Earth the closk-wise description thing would be undesirable - but yeah, with those folks, who are the personified perfection, one never knows.

Pierce continues about cutting meat. Images go thorugh my head of me rying to cut a sausage - this is a pretty easy to cut type of meat. My parents did teach me the skills Pierce advises and I can easily cut some ypes of meat (like hamburgers and chicken filets). When bones are involved or the meat is tough, I still can’t cut the things.

She states that all blind people occasionally bring an empty fork to their lips. Well, with meat (which I use a fork for) this rarely occurs to me, but yu should see me have dinner with unfamiliar people (so that I’m too ashamed to use a spoon and feel I should use a fork) when rice or pasta is involved. (How does one eat rice with a fork anyway? Pasta is possible - the average number of pieces of macaroni I got on my fork in Rome was far below one, but it wasn’t zero.)

Pierce goes on with a whole lot of conventions about bread, butter and backtops. This has always been a challenge to me. Particularly difficult are those mall cups of butter or spread one getsat some restaurants. I can use large cups or pots with some difficulty (I can remember when I still took backtopped bread to school my Mum always commenting how rubbish it looked when I’d made it myself, but it takes practice). Not that I’m now god at it, but I usually don’t really care - it’s not perect, but I at least did it by myself. And here’s the only part of the article in which I feel that I’m more able than Pierce suggets - I don’t know why one should touch the butter for determining what kind of butter it is. One can easily feel that with the knife.

The part on salads, desserts and sauces is one strange piece of writing to me. That is - I think - cause Pierce uses a fork for everything except for sauces and the like, and I use my spoon for most things, and certainly for salad. So for me salads are no big problem, but I know I spill quite a bit - but my manners were bad anyway.

The conclusion makes me wonder, again. According to the folks in the blindness field, my table manners are indeed horrible, I can’t trust my parents’ judgement in these areas - as they’ve become a lot more tolerant of my manners than they used to be, so it makes me wonder if suddenly social conventions changed or if they’re now taking my behaviour as just being the way it is or what -, but I don’t get particularly rejected for having really disguisting manners. And now that I’ve written this entry on table manners, I realise I could write similar entries, with similar last paragraphs, on virtually any daily living, social skills or other blindness skills (hate the word but the alternative is “compensatory skills”, which I dislike even more) topic. It’s sooo confusing…

Astrid

PS - Today Mum and Dad were away, and I helped Sigrid in the kitchen to prepare our meal.

Okay, I can’t keep my plans, can I? I came across some pretty interesting articles in old issues of Future Reflecions. No, this time they aren’t depressing, althoguh they do highlight the importance of a skill I’ve never been taught. But I think I might teach myself slate and stylus use someday if I can find a slate and stylus somewhere (my granddad used to have one, but I think it’s lost). I won’t get great problems when not being able to use a slate and stylus, but it seems like just a good tool to use.

Here in the Netherlands slates and styluses are viewed as old-fashioned. We have Perkins Braillers, Braille Notetakers and Laptop computers. The folks in the U.S. have them, too. But still they teach slate and stylus to children - usually after they’ve learned to read Braille and ue the Brailler, but still. One article stated that a slate and stylus are the “paper and pencil” for blind people. And I think I should agree with that. And one doesn’t consider pens and paper to be old-fashioned, does one?

And while laptop computers are not too big, I do notice that I can’t just put them wherever I want and work with them. This is of course easier with Braille ‘n’ Speak, Braille Lite and other braille notetakers, but then the costs are coming into consideration.

Mum asked yesterday: “But why on Earth arethey still using slate and stylus?” I didn’t really know - and I still don’t view that mastery of that skill is essential -, but I found the arguments given in some articles and in postings on the BlindKid listserv to be pretty good.

Astrid

So, yeah, I’m still awake. Searching Google for journalling/diary

stuff. I’ve been a diarist since October, 1997, have had a digital journal since August, 1999 and have kept various

online journals since October, 2002. My longest existing online one is the Dutch diary at myDiary.nl, but rarely update it now as I have this journal (and I

love the English language much more than the Dutch, so I can write in English here, haha). There even appear to

exist mailing lists forjournallers. How weird. (I’m a mailing list jonky.) But yea, there are mailing lists on

(almost) any topic, and if there aren’t, me or some other folk with issues others haven’t yet created mailing lists

about will create one.

Oh, my MSIE is being weird again. I each time I openit get a web search page. Belongs to Internet Explorer, so

can’t get it away by simply changing my hoe page to a blank page. One also can’t close it without using the mouse,

so my Dad will have to close it for me tomorrow.

Oh tw, I’vefinally decided which book I’m going to read for the next Dutch book report assignment. It should be

from 1880-1910, so I’ll ask Mrs. Peereboom if “Van oude mensen de dingen die voorbijgaan” is right, cause that’s the

only one that’s avaiable online from the Digitale Bibliotheek voor de Nederlandse

Letteren website (Dutch digital library). Still haven’t ecided which book I’ll read for the history project. I’l

at least keep it simple - I think I’m going to read Oeroeg by Hella S. Haasse, cause tha’ts a pretty thin book and

there should be lots of info out there on the Dutch East Indies, which the book is about.

So, just some miscellaneous ramblings. Think I’m going to sleep now.

Astrid