Astrid’s Journal

The occupational therapist was on holiday last week - argh! That meant that two of my four hours of OT were cancelled - the trainee mostly teaches me and he did on Wednesday as well, but on Thursday he was ill. It also meant I couldn’t ask her about “De Boomgaard” on Monday and still haven’t made a decision. I sometimes think I should go there cause the place is a better place to work on what I’m still lacking than my parents’ home - not so much cause I can’t practise cause I can when they’re at work, but cause they won’t let me make my own decisions and will constantly make vague judgments -, but on the other hand I fear that the home is only going to be negative and stereotypical. My counsellor, to whom I talked about it on Tuesday, said it might be an idea to ask some girls who’ve been living at “De Boomgaard”, but I don’t know these girls.

As I expressed my concerns about occupational therapy and mobility, my cunsellor wanted me to discuss my goals for the coming four weeks with the folks. Well, I still don’t have the stuff clearly and that’s partly cause I am horrible at expressing concerns appropriately and partly cause I sense that mainly the OT folks think that I’m going to “De Boomgaard” anyway and I feel uncomfortable when the OT’s trainee pages through a book called “daily living skills” and says there are only a few things we’ll still have to do. It makes me feel as if I shouldn’t nag. I want to see if I can speak to the folks on Monday, cause during class I just can’t get my concern across and besides, all my OT and mobility classes will be cancelled this week cause of some stupid trip I don’t feel like going on anyway. At least I think I have clear what I want people to know, but so I did last week and I had difficulty expressing it, but maybe this time it’ll go better.

In CPH training yesterday, for some reason, we got to speak of what I should and shouldn’t explain about my blindness again. I think we got to speak about it cause of my talking about the discussion with Kira on MOnday. I don’t remember how exactly the discussion went and it was all pretty confusing, but somehow we got to speak of how I come across to people, through things like my not-quite-optimal orientation that sometimes appears to be strangely different. Like, I bumped into two chairs that were standing in the hallway, but I could find the kitchen perfectly well when getting myself a cup of tea. Another student gave me some feedback on how I come across when walking around - including some things I didn’t know (the bumping into things is something I know and am trying to imrpove) -, and Ellen, the trainer, made this comment that I might come across as not exactly bright. Not a statement I haven’t heard people make before - in a lot less euphemistic terms -, but usually it just confuses or frustrates me. Now it was confusing as well, cause some of what the folks said were things I hadn’t known before and I lost the thread of discussion, but I had the feeling as if I understood it better than when folks just say “you seem like an [insert random crazy term here]“.

So how does this relate to what to explain and not to explain about my blindness? My behaviour is not a direct consequence of blindness - some of it might be indirectly related, in that I don’t see other people’s behaviour when moving about -, and I couldn’t really follow Ellen’s reasoning in connecting the topics, but I do realize that people often assume that whatever behaviour exhibited by a blind person is a direct conseuqnece of blindness. Sometimes, people will tell me stuff like “I don’t have any residual sight at all” as an excuse, when I’m helping them find their way to for instance the coffee machine, and it annoys me. Last Thursday when asked to help someone get coffee for herself and guide her to a table, she asked me: “Do you still see it a little?” I do think I use the little bit I see to navigate, along with my cane and my knowledge of the environment of course, but I felt inclined to say “No” just to get rid of that stereotype. Yet I’m myself generating the same stereotype by not explaining anything beyond “I’m blind”. That’s not exactly to do, in my view, with explaining what I do and don’t see, but it does relate to my staying in that comfort zone of not explaining anything beyond “I’m blind” and leaving people to think that all my inappropriate behaviours, like blindisms or poor orientation, are a direct consequence of blindness. I should change these behaviours, of course, but it’s sometimes hard when dealing with behaviours I didn’t know I exhibited or that I didn’t know were inappropriate. I know that people at rehab may tell me these things and I can use that, since the general public isn’t going to - either cause they assume it’s normal or cause they don’t want to be offensive.

I started the week with sight training with Kira on Monday. We were going to try out tinted glasses. She had a whole lot of them, but after my first selection I still had seven pairs. After another round of selecting, I had five, then two. After the hour’s try-out I managed to end up with one pair, yahoo! Its only drawback was that the pair I was trying out was too large for me, but Kira would see if she could get it in a smaller size for me to try out for some time. Many pairs I found too dark, and I commented on it. Why now? It’s winter, so I don’t have the changes of lighting stuff. Does it matter that I just can’t see through the darker glasses? I broke the cardinal rule of sight training in my first two weeks of rehab, but I knew I could do so to Kira. I now feel that being honest that I don’t function entirely non-visually is better than to pretend that I do and to end up confused about the meaning of my residual vision or the lack thereof. After selecting my favourite pair of sunglasses and
deciding to return to Kira on Tuesday so she could see if she had the smaller pair, I wanted her to ask if she was willing to listen as I tried my explanation of my blindness on her. I was at first shy, but asked her anyway and she was willing to be my listener. The first time, I got stuck at my
first sentence. Man, was it ever frustrating. I had had no difficulty explaining my situation to Kira four weeks ago: all I lacked then was some understanding of the medical terminology as it related to my situation, but I had gotten those answers partly four weeks ago and partly last week, and
besides, I could leave out technicalities cause that’s exactly what a CPH explanation is meant for, and Kira knows: it’s meant for explaining your disability to a layperson. And still I got stuck. I tried to relax, then tried again and got stuck once again. I was completely confused. It’s not
just about what to explain and not to explain, but I’m just still confused about what position I should hold for myself. As I explained my feelings of confusion to Kira, she understood that it wasn’t that I couldn’t explain my situation, but that I didn’t know what to explain and not to explain.
I made clear that I was still confused about how to look at my own situation - explaining is even a step further. I have still not fully identified what consequences my vision or the lack thereof is having. Kira thought it would be a good idea to explore some of that in sight training, by for
example going outside so I can explain what I see and she can say what she sees. She agreed with me that I need to use mostly non-visual techniques - we got to speak of that cause I mentioned my concern about the situation before 1999, not accepting braille or the white cane, which I do now -,
but she contends that using non-visual techniques does not mean not using your vision. And who knows, maybe we do indeed conclude that I can’t really use my vision, huh? Kira wanted me to think about whether I think I’m allowed to still have some vision. This is a confusing issue, as vision for
me has both advantages and disadvantages. There are situations when I wish I had black glasses. But does that mean that vision is *always* disadvantageous and hence I shouldn’t use it at all? Today in CPH, I made a list of the advantages and disadvantages of my residual vision. I found four
advantages and two disadvantages. But it’s not statistics: I realize, and so does Kira I’m sure, that taking care of the disadvantages has priority over realizing the advantages. Isn’t that what Mirjam said as well: we weren’t going to seek out lighting that’d enhance my vision, just lighting
that’d help me minimize photophobia problems. We did for outdoors and we’re also doing it for indoors now, but does the fact that I sometimes prefer blindness over vision mean that I should do so in all situations?

As I waited for physical therapy on Thursday - my counsellor had put the wrong time on my schedule, so I was 45 minutes early -, I was thinking about my situation over the last six years and how it’s related to the progression of my eye condition. I’ve known for about eight years that I’m most
likely going to go totally blind sometime. It’s not certain - and I know very few ROP people who did -, but judging from the progressionof my condition, I know I will. In 1999, I decided, after the 1998 report that stated I had adjusted to a reasonable degree to my vision impairment but not to
blindness, that I wanted to be adjsuted to blindness as well. I still don’t know exactly what the folk who wrote the report meant - the arguments she used were that I didn’t think I needed a cane and that I called myself “partially sighted”, which difficulties are both over now -, but I knew that
I was going to lose my vision completely and I wanted to be prepared for it. I think that at the time I hoped or maybe even expected not to be troubled by further vision loss anymore. Not only did the loss of appreciation of vision still trouble me in 2004, even though I did not
experience the losses in basic skills and my self-concept I’d experienced in 1998, but the fact that my light sensitivity worsened made it impossible for me to ignore: in 1998, my light sensitivity had started, but at that time I could get by with regular sunglasses as the NoIR ones appeared to
be too large for me. I realize now that I can to an extent prepare for vision loss, by learning to do things wihtout vision - something I can, now -, but that I can’t expect not to be troubled by changes in my vision anymore. I also think that my wanting to be “prepared” for total blindness
has its drawbacks: I was “prepared”, in that I didn’t care - or maybe even in that I thought I didn’t care -, till early 2004, but ever since I’ve found myself still caring about residual sight - through the appreciation thing and the inability to avoid it cause of photophobia -, I’ve been
obsessed with remaining “prepared” to the point of missing its ultimate goal: adjustment. My attempts at coming across as if I don’t care about my residual sight may to outisders seem to signify adjustment - constantly highlighting and emphasizing minimal vision to the point of competing, as I did at the summer programme last year, does not,
but I don’t feel the need to do that one bit -, but they do not. I wrote about feeling at peace with a truly realistic image of my vision or the lack thereof on November 1, and that’s exactly what I mean here: I can fully accept my current situation - which, in my case, includes mostly using non-visual techniques and not emphasizing vision that’s not relevant -, but how on earth can I completely accept a situation that is not mine? I’m blind, I’ll never forget that, and I use alternative, non-visual techniques to accomplish the tasks of daily life, but I’m not totally blind and I can’t accept that I am. If that’s what the 1998 folk had meant or what my parents mean when they say they want me to learn to function non-visually, I respectfully disagree.

I’m feeling terribly frustrated by my situation at rehab. I’m thirteen weeks through my programme and my parents and Sigrid say I’ve learnt nothing - while when we had open house, they said I had. But yeah, that was to my counsellor, and my Dad appears to be a champion at hiding his feelings, as the final discussion in the evals week illustrates: he didn’t want me to go to rehab till after that discussion, but at the discussion he said he was totally fine with it. I should never have believed my parents’ statements. And maybe I should’ve signalled my situation going downhil back in the seventh week, when we started with the table for four and I found myself asking the other students on it in what week they were: the third and fourth week, respectively, and it made me feel bad cause I felt I was equally unaccomplished to them. In my ninth week, I told my counsellor about my “mid-rehab blues” but cause I know about high expectations of myself - perhaps too high for this traditoinal centre - and I also know my self-confidence could have a boost, I said it could be cause of so many reasons. “It goes well,” was my counsellor’s conclusion at the end of the talk. I didn’t fully agree but was reassured by the positive comments he’d gotten from rehab workers. Now I’m in my thirteenth week - or actually, I’ve finished it. Two weeks ago, I expressed my serious concern about occupational therapy and mobility. The counsellor asked me if I had enough mobility training, and I said I didn’t know, and he answered my OT concerns with something that included the word “Boomgaard”. Then in my twelfth and thirteenth week, aka this week and the last one, I found myself addressing issues that had been addressed in my evals week or admission interview but had not been important till now. One of them is the “locked up inside” issue. I talked about it with Monika (the trainer from assertiveness and communication) last Tuesday. What she explained, from her specific paradigm, made sense, but I’m not sure if I can change and how to accomplish it. But I suspect the table manners thing is similar. Part of this was and is embarrassment with my situation. I experienced it in my evals week just as well, and when I truly think that addressing an issue can help me, I’m more comfortable with it than I was then, but the table manners thing or the communication difficulties were things I doubted it about - and about the latter, I am still skeptical, never minding that it used to be the very paradigm we came up to the centre with.

Another thing is that I’ve from the beginning on probably progressed more slowly than the average student. At least, that’s how it seems. I don’t know if I should’ve signalled it before, cause I don’t know if it’s accurate. After all, in some subjects I see myself doing the same things as other students who are also in their thirteenth week. Occupational therapy is among them: a guy who is also about thirteen weeks through the programme is mostly doing the same cooking I do. I don’t know about housekeeping. I’m just not sure, and I’m not even sure what progress I expected. I was happy that I called the uni in September and that I applied for housing as soon as possible. I’m doing what I can to make sure I can start college in September and get into the dorm as soon as possible. My parents expect more. They said something along the lines of my not being self-confident. I don’t know what they judge that from, since they’re the ones that say I can’t live on my own, not me. Of course I’m not sure what it will be like, but that’s not going to keep me from doing it. By September, at least, but that’s also cause I didn’t get to know that I would be finished by December 22 till August, so that making arrangements so that I could start college in January was (almost) impossible. Dad asked me why I didn’t go there after rehab yesterday evening. I replied that I wouldn’t have my books, wouldn’t have the adaptations arranged, etc. He said I should’ve done this before. Even if I had felt that I could do it upon starting rehab in August - I didn’t, at the time -, college was closed till early September and I wouldn’t have my books on time if I got a list by then.

And at the same time, they say I ain’t able to start college or to live on my own. The reasons they use are as vague as the ones they used last year in at once endorsing and condemning rehab: something with self-confidence, something with not thinking I have the daily living skills (just cause they haven’t seen me do them, cause they keep wanting to help), and something with social skills that we all know isn’t going to get better anyway. Do I truly give up on my social skills? Yes, I think I do, since Sigrid just said that I’ve only become more anti-social over the last so many years, while I’ve done more my best over the past three years or so than ever before, and am desperate as to what I could do about these difficulties of mine. If my parents think that all I’ve tried so far hasn’t helped, then what will? “You just have to try your best,” Mum and Sigrid both said, and I felt like crying. I’ve done my f*cking best for years and I still do, only they don’t notice, apparently. Is doing your best always a guarantee for progress? Apparently. By the way, when I told Mum I’d tried my best but didn’t know what else to do, she said she didn’t know either and I should see a [can't remember not-well-respected relief worker's title].

It all sounds scarily similar to last year, only now I’m more certain that I can accomplish my plans than my parents are, while then it was the other way round. I do have my worries, but they’re about things no “Boomgaard” can help me with. I know I will encounter the same social interaction difficulties at uni that I encountered at high school. Sigrid says I’ve only become worse at that. I know more assertiveness will be expected of me then than I’ve ever utilized. I know these have always been difficult, and are still, but I feel I have made progress at least as far as making sure my studies are accommodated for goes. A “Van O.” issue won’t occur to me anymore. Interaction with fellow students will remain difficult, but I’m also sure that part of that is a simple “dorkness”, ie. inability and lack of interest in the social conventions of college student culture. I could’ve utilized all social skills on the list given to me by Mr. De B. in late 2002, and it would’ve helped enhance my contact with classmates in that they would despise me less, but I would still feel equally lonely. It’s how Sigrid judges sociability: she says she isn’t social cause she has no friends. I don’t agree: I’m sure that there are very few college students I’ll befriend even if I am going to practise all my social skills perfectly, simply cause I don’t belong to the clique cause of very different interests. I think at high school that’s not much different than at college. Now for me there’s also the part that social skills *are* difficult, but I do think I’ve improved in those areas, like refusing help appropriately, asking for assistance, etc. My parents and Sigrid form an exception, I’m willing to admit, and I’m sure that’s pretty much my problem, but it’s not in a lack of skill. It could still use some significant improvement - I had a bad experience asking for assistance last Wednesday in mobility class again - but I’m farther than I used to be.

But is it about making progress? It is one of the worst mistakes parents and teachers can make in judging how well a disabled student - and I think it applies to non-disabled students as well - is doing in school: using progress as the measure. Progress isn’t SMART. By comparing my situation to last year’s, I can be optimistic cause last year I did horribly. But isn’t it good that I think I’m going to do the things I planned to, like go to college and live on my own? I’m in fact looking forward to it. Last year my parents thought that with effort, I would accomplish these things, and now they say that I won’t cause my fellow students can mirror each other. It’s confusing: last year I had no skills and my parents thought I could make it, and now I have some very useful skills and my parents think I won’t. Who said something about self-confidence? I’m confused.

I’m going to tell my counsellor about this situation next week. I’d resolved to already today, by making lists of what I still wanted to do in the various classes so that it would be more clear - cause yesterday I spoke with the occupational therapist’s trainee, who is now training me instead of the OT, and he said he didn’t know much else to practise, while I do -, so that we could be more realistic about whether it’s actually going well, but I think that some of what I’ve written here is just as important to at least consider. I’ve also resolved to call Ellen, the occupational therapist, on Monday, to ask her if she has time for me so I can talk to her about “De Boomgaard”, or if she’ll attend my OT on Wednesday or Thursday, cause I just want to have some things clear.

I called Kira (one of the sight training folks) on Monday to ask if she had time for me cause I had some questions. In advance, I’d prepared a paper explaining my condition, residual vision, lighting etc. and had put questions in it in italics. So as I saw Kira on Wednesday she read the paper and was able to answer my questions.

Some questions were about my visual acuity as stated on my report. It said something about my right eye having something called “spatial perception” along with light perception, while my left eye was said to have light perception only. Kira didn’t know what that meant, but assumed it should’ve been the other way round, since I see more with my left eye than with my right one. Then there was the explanation about object and colour perception, which Kira thought to be an approximate estimate of my vision. I’d written down my own experiences and asked about not seeing more detail when objects were near. Kira said that not seeing detail was a better explanation than a vague statement about what objects I did and didn’t see. We experimented some. Kira lay her pen on the table, and I could see something on the table but absolutely not what it was. Then she lay her diary on the table, and I could see its size, but not its form. I could also see the glass in front of me, but not the lines on it, which Kira could see. Today in CPH training, Ellen mentioned being able to count the holes in the buttons on my sweater, while she was sitting across the table. I never knew.

Kira explained some more about how we see objects. She said that it’s size, contrast and light that allow us to see. She took as an example that I might put a white cupboard against a white wall but not be able to see it, or I might put a black doll cupboard against the wall, which was too small for me to see, or I might put a large, black cupboard against the wall with no light in the room, so I wouldn’t be able to see it either. This combination is not something I didn’t know about already, but it made me think about some things, like why I do see a sidestreet between grass fields - the sidestreet is one two people can walk on with ease - but don’t see a crosswalk, which has black and white stripes on the road.

Kira made some comment about my field of vision, and I said it wasn’t measurable. Still, we could say something about it. We got to speak of facing people again, and I tried to face Kira, but according to her I looked at some blackboard to her right, between which an other person could’ve been sitting. The Dutch term for that is “excentric fixation”, and I don’t know if this term exists in English as well. I’m surprised that I truly look to the right when trying to face someone, not just when trying to see them sharply. But Kira said it wasn’t rude to change between looking in the other’s direction and looking to face them in my own opinion.

I had lots of info and lots of questions about lighting. I’d thought about perhaps asking Mirjam about these things, but now that I had this time with Kira I could ask her just as well. I asked her about changes in lighting and how it could be that I had trouble when going from darkness into lighht, even when light normally isn’t too bright for me. She explained that it was possible for someone’s pupil in their eye to react slowly. Well, that’s likely, as my parents have said similar things.

I also wondered why natural light seems to bother me less than artificial light. Kira explained about the spectrum of colours of light and said that sunlight has the full spectrum and in artificial light it’s tried to imitate it. The white light I like best is the best reproduction of natural light. So that explains why indoor lighting is too bright for me, while when it’s cloudy, I only sometimes need a sunshade but no sunglasses, while if you were going to measure the Lux values, outdoors the light would still be brighter.

Then there were some comments in my report about colour perception and my not being able to identify colours. I wondered why I did not see everything in shades of grey while I still can’t identify colours - I seem to call everything red. Kira didn’t really know. She explained some about green, red and blue light being some sort of basic colours of light, and thought that it might be I am more sensitive to one colour, but she’d ask someone else.

Because of my troubles with indoor lighting and my sunglasses not really working there cause then I get trouble when going outside, we’re going to look if some pair of lighter sunglasses might help. In the meantime, I also did some experimenting with my sunshade - after all, it only costs 2 euro, while my 49.50 euro sunglasses are cheap -, and am going to take it to sight training next Monday, when I’ll get to try on the sunglasses.

Yesterday, another student who is in my CPH group approached me asking if I knew whether the trainer would be there today. She had been absent all week and no-one had heard whether she’d be there today. When having dinner, a residential staff folk told us that according to her, we could go home. I wanted to, but, being a nerd, decided to stay anyway cause the CPH might as well not be cancelled, and I wouldn’t want to miss it should we have CPH. At first, the Thursday evening was doubly boring - firstly cause Thursday evenings are boring anyway and secondly cause I knew I could’ve been home - but eventually I spent the evening till 11:45 playing cards and discussing politics with some other students, including two other CPH students. As I went to bed, I thought: “If we’re unfortunate, we’ll have to be at CPH training at 9:00 AM.” I got up at 7:20, as always. After breakfast, I asked a residential staff folk if Ellen would be there today. She didn’t know, but would call to find out. A while later, she came up to me to tell me that CPH would go on. I told the other students and so we were all there at 9:00. Then Ellen told us that she still actually didn’t feel like doing the training and if we were okay with it being cancelled and having an extra training either next Wednesday, the Wednesday thereafter or December 16, after the training has officially ended. This Wednesday, the next or the one thereafter didn’t fit with some of us - this Wednesday and November 30 not for me and November 23 not for another student -, but we were all fine with December 16. Ellen asked if it wouldn’t be a problem with our finishing dates, but mine is December 22 and all the others’ is sometime in January, so we were fine with the training being rescheduled. After explaining what we’d done last week to a student who hadn’t attended and all the discussion that came from that, it however was already about 10:15, so Ellen concluded correctly: “Hey, I notice I’m just training you.”

The student who’d explained her condition last week, told the other girl about doing so and some about her vision, as Kira has explained it. Ellen told about the other student’s explanation - cause he didn’t attend cause he’d thought it would be cancelled -, and I explained what I’d done last week. I tried to keep it short, cause most of what I’d done was related to explaining what I’d done two weeks ago, but it led to some discussion on my often talking softly - I’d been very loud in the political discussion, the other girl said (I know I am) - and its effects. It also led to another brief discussion on residual vision and using or explaining it. I feel that now that I’m so light sensitive, I have more trouble avoiding, physically, that I have some vision. This has the consequence that I’ll have to mention it more quickly, cause fi I’m going to sit in a college class with sunshades or very dark glasses on, professors may not approve of it. I said this was the only thing, and I didn’t really care about, for instance, the sidestreets thing. Ellen asked what was the difference, and I said that at times my light sensitivity requires some minor form of accommodation - cause even realizing that a sunshade is not meant to be “cool” or disruptive is some accommodation (though I don’t know of course how strict college professors are on such manners) -, while looking at sidestreets may just be “weird”. So is taking bread with nothing on it, and I don’t feel the need whatsoever to explain that - if there even were an explanation. But maybe the difference is just that I’m not that aware of things like the sidestreets stuff as I am of the sunshade/sunglasses/lighting thing.

Ellen also remembered my remark about the connection between explaining vision and poor adjustment. I explained once again that this once was the case - that I’d mention vision just cause I’d not accepted blindness -, that I’d then started to call myself “blind” and leave it at that, which had worked for 4 1/2 years till the light sensitivity worsened and hence I couldn’t avoid my vision physically anymore. As my writings on for example July 6, 2004 illustrate, I always felt strange about this, cause I saw a connection between emotional adjustment and physical accommodations that wasn’t necessarily there. Admittedly, in 2004 I did have some emotional difficulties, but I don’t now and the light sensitivity has only become a bigger issue. I contend that these two things may be related, but are still different. I know that I’m at peace with a very realistic explanation of my situation (as in the eval report), so why not use that as a starting point - what parts of that to explain and what not to explain, is part two.

Another student told us about a presentation she’d done for her sight trainer and needing to presnet her vision impairment with confidence. That got us into a talk about discussions we’d had and assertiveness. I somehow got to mention my still h aving some questions about my situation vision-wise and doubting whether to ask Kira or Mirjam about it, cause after all I’d had sight training and I still agree to Mirjam’s opinions about my vision (or rather, the lack thereof), but some things are just not clear to me after all. This other girl reminded me that even if you’ve had sight training, it doesn’t mean you have to have gotten rid of all your questions you’d ever have. She said that once we’re finished with rehab, it doesn’t mean we have to have all our answers about handling our vision impairment, does it? I think I’ll still ask Kira if she has time sometime.

Another woman talked about job interviews and that soemhow led to a discussion on notetaking. We got to discuss the negative message taking a portable tape recorder or a laptop with you would send. I personally don’t have a problem with laptops at all, but tape recorders can be annoying indeed. I mentioned never having had problems with people not wanting me to take notes on the computer or using a tape recorder, when I’d asked them in advance, but I admitted that at high school, my parents had mostly explained this stuff to teachers. Next week, both of us will bring in our laptops to see how it works.

I visited “De Boomgaard” (the independent living training home) on Wednesday. First, I got an explanation about what this training home is like. Residents get a coach who will help them set goals and schedule things they’ll learn and activities. Every three months, you’ll review goals and see what you’ve reached and what you’ll still need to learn, and you’ll schedule activities/training each week. You have your own apartment, either one room or two rooms - the single-room apartments are more like dorms, to me -, which unfortunately has most equipment and stuff in it - you can bring your own things, of course, but it’s not really realistic. In your apartment, you can do your own cooking, cleaning, etc., cause of course that’s what it’s meant for. I was positively surprised at the fact that training is a pretty significant factor in your stay there. Of course that’s exactly what Ellen told me, but I know homes like these where you’ll just get assistance with what you can’t do and be expected to move out at some time and that’s it, and then I could just as easily stay with my parents. However, I was a little annoyed at the “but we’ll help you learn that” quotient when I mentioned difficulties of mine. Of course that’s exactly what I expect such a facility to do, but in this context it sounded somewhat negative, as if to say: it doesn’t matter that you can’t do anything for yourself, cause we’ll help you learn to. While I can do many things for myself! In the end, I asked the staff folk about this - explaining that I’m fairly independent in arranging things for myself and was afraid that they’d take over these things, assuming I couldn’t do them - and she assured me that they’re very happy if you’re independent. Still, I want to know some more about the agency before making my decision of whether to go there - just cause the rehab centre doesn’t conform to my prejudice, doesn’t mean I’m rid of the prejudice. I still remain a critical consumer and I don’t even see that as negative and ain’t going to change it.

Yesterday, I read some artciles on special education and they reminded me of my own situation. Particularly, the articles advocating inclusion, like the one entitled For Whom the School Bell Tolls, make sense. Of course, the aim of special schools is to prepare disabled children for “the real world”, but all I remember them doing, in the seven years I attended them, was to tell us what all we’d need once we got there and that if we didn’t meet these standards, we wouldn’t be ready for it. This had its advantages, in that indeed it’s necessary for disabled children to learn the things they’ll need to in order to integrate successfully - I sometimes despise the fact that my parents wanted nothing to do with the entire blindness field after 1999 -, but it went too far: you won’t get a child prepared for something she’s never known after age five, the time before which I don’t remember much about.

However, the normalizing happening at special schools can go too far, as this article illustrates: what use is there in learning to hold a cup that looks more stigmatizing than a straw. It’s the same everywhere: kids with disabilities have to look as “normal” as can be, never mind that sometimes alternatives make them look a lot less stereotyped.

Doesn’t the practising of “normal” methods where alternative ones are more efficient, just send the message that you’re bad when you can’t use the conventional method effectively? I think it does, and it does nothing to prepare kids for “the real world”, or it should be that people have a bias against the disabled. That was something we were told countless times at special schools: whenever the topic of going to a regular school, for instance, was discussed, the first reaction the teachers would give was a doubtful: “But that’s going to be very difficult and what if it goes wrong?” It was also what my tutor asked me when I told her I’d go to a normal high school. I don’t remember what I answered, but I know that I was very confused. It was difficult, I know, but it didn’t go wrong, unless you think that the fact I have returned to the blindness field now is a sign of failure, which I sometimes feel but don’t think.

Still, I think that in inclusive schools, there should be enough services for disabled students. Just placing a kid with their non-disabled peers and leaving it at that, won’t get them to achieve. I feel that in the Netherlands, this could be done better.

I’m currently reading chapter VIII of the book Freedom for the Blind: The Secret Is Empowerment by James H. Omvig. The chapter is about emotional adjustment. It is written from an NFB point of view on blindness, and that’s noticeable in some negative ways, but others are very correct and I’m sad they’re not that commonplace here.

Blindness specialists who are truly interested in full empowerment and freedom for their customers—those with the empowerment motive—must do the exact opposite. They must see to it that blindness is routinely discussed and that the word, “blind,” is used over and over. This word must become normal and commonplace (comfortable) for the customers of the program. Denial must be eliminated as a method for coping with blindness if true empowerment is to be the objective!

By “blind”, Omvig of course doesn’t just mean the totally blind, but also those with low vision who will benefit as much from the use of alternative techniques as the totally blind do. I feel that in the Netherlands, and in Europe in general, the word “blind” is far too often used to mean “totally blind”. In fact, the European Blind Union, who made a differentiation between “partially sighted”, “very low vision” and “blind”, say that you’re only blind if you can’t see the difference between day and night. A more liberal definition is that of not being able to orient to light, ie. true light perception only or no light perception. Then there is a Dutch term meaning something similar to how the American term “legally blind” is used out of legal situations, befined as vision no better than 20/400 (or something about one’s field, I assume), but this term is not commonly known: in fact, I didn’t know about it till Kira mentioned it last week. “Braille-bound” is another statement - don’t yell at me for the negative connotation, in Dutch it’s a little less negative but still somewhat bad -, meaning the same as the educational word “functionally blind”. Often, this is my favourite distinction, because of the assumption that “blind” means “totally blind”. I’d love to see that change. It’s something some blindness professionals and blind people begin to recognize, like the one in 1998 who said I had to accept blindness. She didn’t mean total blindness, after all, she also said that I could still see the doorknob. She just meant I had to admit to and accept needing the same alternative techniques the totally blind use, and hence, to be comfortable using the word “blind” to refer to myself. I think the word “blind” has to be used much more routinely by people working in the blindness field, but I’m not sure where the line lies: it shouldn’t be a way of denying residual vision.

Another approach, related to this topic and to the discussion on meeting challenges in the next section, that in my opinion has positive effects is to acknowledge that blind people - including the totally blind - can meet many “normal” challenges. One of the very negative sides to the rehab centre I attend, here, is the differentiation between the partially sighted in team three and the blind/very low vision in team one. (Team two refers to those that also have Dutch as their second language.) This does not bother me as much in the general rehabilitation, because in team one non-visual techniques are used to accomplish many “normal” activities, and also clients in team three learn to use alternative techniques like braille and cane travel. I further don’t disagreee that partially sighted people have to find a balance between visual and non-visual techniques - just as much as they have a “blind side”, they have a “sighted side”. However, what I disagree with is the differentiation between what activities people are exposed to. On November 30 and December 1, we’re going on a two-day event meant at being challenging. We’re team one, so we’ll do different things from what team three did. Why? I don’t know if it’s done with that idea in mind, but it sends the message that as blind/very low vision people we can’t do the same things the partially sighted can. In some ways, this is true, of course - we can’t paint, while some partially sighted people can -, but does it mean we can do less “normal” things? I don’t agree, and that’s one reason I’ve always hated the rigid distinction between team one and team three: I know someone who, judging from her vision, should’ve been a student in team three but who started in team one, and she didn’t miss out on ways of helping her find the balance between vision and non-visual techniques. I did/do some things with only partially sighted people, and I don’t see a problem with that.

The NFB centres and centres with a similar philosophy, tackle the problem of overemphaiszing vision or sending the message that blind people can do less than those with low vision, by blindfolding people who are partially blind during training. This has some advantages in that it teaches that even without vision, a person can live a “normal” life. I know its usefulness in this way and for that reason, have forced myself to do things with closed eyes. The comment Ellen made about the facing people, for that reason, bothered me: the fact that I couldn’t direct my face accurately with closed eyes, says nothing about the value of my residual sight, it just says I haven’t learnt to do so without sight yet. This, however, is not just about emotional adjustment, for which other factors are just as important, but also about doing things at night, for instance, when I’m functionally blind. Blindfolding is also useful in the teaching of alternative techniques. People at our centre have to do typing with a black screen, for instance, and they cannot look at the braille they write or read. People who are night blind will also learn to travel while wearing darkened glasses or they’ll truly travel at night, because they need to learn to use the alternative techniques they’ll need when vision fails.

However, it is also important that people with low vision learn to balance between using visual and non-visual techniques, and blindfolding will only turn off vision, not allow a person to find that balance. I think it’s more important to learn strategies of functioning as a person with the vision or lack of vision you truly have. Therefore, of course, it’s important to learn alternative techniques and to explore the effect using your vision has on you (it may cost you much more energy than using an alternative technique), and therefore I’m really happy that people in team three also learn braille, for instance, so they have the choice of what technique to use.

Omvig further stresses the importance of positive role models and frank discussion of blindness. It is one advantage of my being a residential student at rehab, even though I live nearby: I have the ability to exchange experiences outside of class. Even though I’m considered far along on the journey, I know that in some ways I’m not and even some recently blinded people can offer very helpful support. There’s a woman in the vocational rehab programme who was blinded in January, 2004 and yet still truly appears to be so well-adjusted - and she doesn’t seem to be in denial or whatever, like I suspect some folks to be. She was able to give me some helpful tips a while back and the way she copes gives me the idea that I, too, can do so. There are also, of course, the blind rehab workers who send a positive message about what blind people can accomplish. You see, even though I’ve been blind all my life, I’ve not often met successful blind adults before I went to rehab, since there were hardly any blind teachers at the schools for the blind.

I think emotional adjustment is also about getting used to appearing or presenting yourself in a certain way. Even though my views on the connection between what I call myself and my emotional adjustment are somewhat paradoxical, I think that it does help to realize that appearing blind is not a problem, if, of course, that’s not appearing blind in a stereotypical way. I seem to appear pretty much blind in a sterotypical way, which I never realized until people like Kira and Ellen pointed it out last week, which is not a way in which I want to appear. Still, I don’t have a problem with telling people that I’m blind and I’ll carry a white cane everywhere I go. It used to be that I felt that being seen as blind is a form of “collateral damage”, but I’ve come to realize that it’s also helpful and regardless of that, I’m used to the idea. I don’t see, therefore, why forcing long, solid, white canes would promote emotional adjustment. A person will get used to the idea, but it is in no way a “quick fix” for those in denial or mourning. Adjustment is about seeing that as a blind person, you can be competent, and my starting to use a white cane in 2000 didn’t get me to understand this at all. Seeing that I can go to the shopping centre, get what I want and return in a reasonable timeframe, does.

This morning, CPH was once again interesting. At first, each of us were asked if we had anything interesting to say in advance, like if we’d been busy with a CPH topic over the past week. Ellen asked me to explain to another student who hadn’t attended last week, what things I’d learnt last Friday. With her help, I explained about my residual vision and using it while facing people. I’d experimented during the week-end by facing my Mum with closed eyes, and while I did look in her direction, I couldn’t face her as accurately as I can when looking at her “shadow”. Ellen asked me if I could see the other people on the table, and I said I could only see the people on my left side or across the table. Someone asked why that was and I explained that I have vision in my left eye only (with the right eye, I can see it when an optometrist shines a flahlight into it, but that’s it) and also always used to have side vision only, so that may still apply even now that I have so little sight - after all, a field of vision doesn’t get better when it’s not measurable anymore. Someone asked fi it wasn’t cause the people on my right were sitting in the light, but I don’t suspect that since last week when we experimented with the people standing near the wall, that side of the room was also lit brightly, and I remember the people in my low vision/sight training eval concluding I had better vision with more light. We exchanged seats so that I could face some people better, like Ellen and someone who is hard of hearing. Then I and Ellen explained further about the nystagmus - by the way, I forgot to ask other rehab folks if they could see it -, and the other things, like the non-verbal behaviour like hand motions. We later got to speak about that somewhat again.

The other students added some thoughts. The one who didn’t attend last week had to explain his eye condition to Kira individually last week and told us about it. That was pretty interesting, particularly when he mentioned the usefulness of simulations. I have always felt strange about them, but Dad’s and Mum’s walking with the white cane and making bread did make some sense to me and made it more practical than my telling them these things 1000 times.

After a short break, another student who hadn’t explained her condition last week, got her chance to do so. The medical info was, according to Kira and us, correct and well-organized, but we’d loved to have it more practically, which was pretty complicated. Kira showed on the board what this woman could still see and we hence got to discuss it somewhat. Then Ellen was shocked as she looked at the clock: it was 11:55, while we’d some other thing to discuss. Fortunately, it appeared the clock hadn’t yet been turned back when daylight saving time ended last week-end. So we took another break and Kira left.

After that, we discussed our goals for CPH. I’d forgotten to print them, but had remembered them. I wanted to find out what to explain and not to explain to people at university, like professors or fellow students. I had put a sidenote stating that I wanted to present my blindness realistically, but that it didn’t need to be an explanation everyone agreed with. I explained that my parents would just tell folks that I’m blind and hence can’t read print so professors should hand in material in digital format. Maybe they’d explain some more, but that’s mostly what my eachers were told by my parents when I was in early high school - I assume that in seventh grade, they and my tutor were told more about accommodating for me, but not much later. I said that besides the question of whether or not to mention residual sight, it also mattered what to say about accommodations in my situation. I can pretty easily create a “tips for teachers” sheet - in fact, I did -, but I’m to an extent lost when having to explain issues specific to my own situation. Ellen concluded that for me to become aware of how I come across is also something to pay attention to and which the others could give me feedback on. I agreed. I made some comment about the connection between mentioing residual vision and poor adjustment and explained about the situation years ago when what I called myself *was* representative of how I handled my blindness. Now, it’s not, since I’ve pretty much overcome the problems with that type of adjustment - I admitted to still having my difficulties. Besides, why would it be that others can judge better what is an accurate explanation and what is not, except when judging objective values like colour vision or visual acuity, than I can? Just because of allegedly poor adjustment on my part? The situaiton in 1998 was different: I was convinced that I had more vision than I actually did, in terms of visual acuity. For example, I’d say I had 20/600 vision, while it was measured at no more than 20/1000. I never knew the outcomes of my eye exams or low vision evaluations - and the last one had been in 1995 before the one in 1999, which I wasn’t informed about either -, so I couldn’t judge whether my parents were accurate or I was, and so I assumed my parents were just lying: after all, they didn’t have my eyes, did they? They still don’t, and at this moment the situation is much simpler, since firstly my parents have a clearly defined opinion - I’m blind, period - and secondly I now have the results of last June’s low vision eval which to an extent disappointed me at the time (particularly my true inability to identify colours) but which clearly state that I have light perception and can distinguish colours and see objects. By the way, I looked up the statements about that in the report and the objects and colour thing was said just below the statement about my visual acuity being light perception,
without even a new heading. I didn’t explain this, of course, but I did mention my feelings relating to the 1998 situation. Of course, Ellen said, I had to feel good about the presentation I gave, but I didn’t need to do a presentation my parents would be satisfied with. I agree, and I explained some more about the situation as it went at high school: that the explanation my teachers had gotten (that I’m blind) had worked for a long time, cause I didn’t realize it was noticeable that I used my sight and didn’t really care, until my light sensitivity worsened in 2004. Now I want to figure out what to explain for myself, cause I truly have my eyes. Realism about my situation has an advantage in this sense, in that it avoids vague guesswork and possible exaggerations/overestimations, but it also made me feel more at peace with the situation, knowing that I wasn’t faking or pretending. I told Ellen about feeling helped by Kira’s explanation - sad I forgot to tell Kira. After each of us had explaine their goals, we discussed how we’d do the rest of the training. Next week, we’ll start to work with the step-by-step thing, and one student can already do her presentation. I’m curious as to what it will be like.