Astrid’s Journal

The issue of the relationship between how I present my blindness and the extent to which I am or seem adjusted to it, has been very important for me for a long time, and has gotten more importance in 2004, when at once I lost significant amounts of vision (for me) and started experiencing greater problems due to the little bit of vision I still had, cause my light sensitivity worsened, likely due to the cataract - at least, that’s what I heard another rehab student say. On the one hand, I felt I ought not to care about my residual vision whatsoever, cause it was even less than it had been before. Yet on the other hand I truly couldn’t turn off my light perception, and it was troubling in some ways. I still haven’t figured out all that. For instance, I sometimes wonder if I’m not wasting my energy by doing some things visually, like looking for sidestreets, while I’m sure there are non-visual techniques to find out. That’s what Dad said to explain his skepticism of sight training: that I ought to learn to function without my residual vision. Fortunately, Mirjam (my former sight trainer) agreed.

Still, what my father said always came across to me as: “You’re blind anyway and don’t ever think you’re anything else.” I haven’t disagreed with the idea that I’m blind for over six years - it was sometime in the autumn of 1999 that I replaced “partially sighted” with “blind”, and at this moment I cringe at the idea of anyone calling me “partially sighted” or even “severely visually impaired”. “Legally blind” is fine - till Friday, I didn’t even know there was a Dutch term for that -, and so is “nearly blind”, but not these politically correct statements. As for what I say myself in reference to my blindness, the situation is different: it has to be “blind”, otherwise I don’t seem well-adjusted. Unfortunately, in the Netherlands, “blind” always connotes “totally blind”, as opposed to in the U.S., where it seems to be more accepted that blind people may sometimes have a tiny bit of vision. Still, the 1998 folk who said I was poorly adjusted and gave as a reason that I don’t call myself blind, did mention somewhere that I had some residual vision, in that I saw the doorknob when entering the testing room. I now agree with her apparent philosophy: that it’s nonsense that only the totally blind are blind, and that “partially sighted” was (and is) an inappropriate term for me. However, I’ve long felt it to mean that my residual vision shouldn’t matter to me, in neither a positve nor a negative respect.

This has had its advantages, in that I got used to presenting myself as blind and presenting myself with the alternative techniques belonging to the blind, like the white cane. I started using it in the autumn of 2000, and at first I felt embarrassed and stigmatized, but I got used to the idea to the point that I’m still feeling sort of troubled at the idea of appearing blind, but I think the white cane is a better means of being seen as disabled than my embarrassing way of walking without it.

During all these years starting in 1999, I kept mentioning my residual vision when explicitly asked about it, and I kept feeling sort of strange about the totally blind. I remember when I was at the International Computer Camp in 2002, meeting a Dutch staff member named Suzanne, who was totally blind (she hadn’t always been), and at some point being strangely astonished at her knowing something, I think what we were going to eat. As if I, with my tiny bit of vision, could see that: she just smelled it. Having met more totally blind people in the years that followed, I’ve come to realize that I was attributing far too much of what I did to my tiny bit of residual vision. Turning off the lights in my room cause of light sensitivity made it clear to me that I could do the same in the dark as while looking, and I hence got a better understanding of what my residual vision meant and didn’t mean to me. I must admit that in some instances I still find that hard, like travelling in the dark, but I’m learning and growing everyday.

How does all this relate to the question of whether to mention residual vision and what message my choice about this is sending? As with many issues, I’m having a paradoxical view on that: on the one hand, I feel I ought not to be bothered by my residual vision and to pass for totally blind, but on the other hand the way my vision is still both helping and troubling me, makes me emphasize it more, and maybe more than I should. I wanted Kira’s explanation about the light perception and seeing objects thing, cause it gave me something realistic to mention, that could explain why I look for sidestreets or why I’m light sensitive. It’s not just relevant for others - I wanted this explanation cause I wanted a realistic image for myself. I believed that the optometrist at rehab was correct, but I couldn’t understand why I had the vision I did have and how it was connected to the outcome of the low vision evaluation. I did not alter my explanation of what I still see on Friday, cause it’s the way it is, but I now understand that it’s possible.

I still don’t fully understand the factors contributing to the question whether or not to mention residual vision, but I now have something realistic to say, should it be relevant. This doesn’t feel like poor adjustment. Exaggeration or using incorrect terms, like “visually impaired” or “partially sighted”, does. Kira pointed out the Dutch term for “legally blind” - defined as someone who has vision of 20/400 or less -, and it’s fine for someone to call me that. I’m not sure what message it sends if I’m going to use that term to refer to myself. The person in a recent Braille Monitor essay who wondered if he was blind, said it was too vague a term, and said blindness should be defined functionally. I agree, and in that sense I will always say that I’m blind, but people’s misunderstanding, even at high school and at rehab, of my light sensitivity, makes me feel that to people who are not casual strangers or people I’ll only meet very occasionally, I should have to explain something. Is that poorly adjusted? I don’t know.

In 1999, when I entered high school, there were two different types of presentations about my situation. One was the one I gave to my classmates, pointing out that I’m “nearly blind” and consequently explaining what I could and couldn’t see for a couple of weeks to curious classmates. The other was the one my teachers have always gotten from my parents and Mr. De B.: “She’s blind.” The rest was irrelevant except when dealing wiht light sensitivity issues, which I never mentioned, or when it was noticed that I was looking at something - but who knows, maybe that’s just a blindism, one could say. Pretending to look around is said to be one, I read someplace, but is sincerely looking around? I don’t know. It’s always been forbidden, and so has looking for sunlight to orient to. Is this to get used to adjustment? Is it in fact maladjustment? My situation of 1998 was similar to that of 2004, indeed, and that could be called poor adjustment to blindness, but my situation in all these years between 1999 and 2004 and now in 2005? I don’t care about getting better sight in some way, like through correct lighting - I hate light and don’t care my vision is better with 360 Lux than with my comfortable 150 Lux or less. I don’t care that people will tell others that I have no useable vision. Is it still poor adjusmtnet to mention that I have light perception and hence am light sensitive? When I returned from CPH on Friday, I kept telling Mum things like “Not that it’s relevant, but anyway”, just to soothe her: I wasn’t returning to my 1998 situation. But neither do I want to feel I ought to present myself in a certain way, get misunderstanding for things like light sensitivity, just cause it seems well-adjusted.

CPH was once again very interesting. Kira, a sight trainer, attended our training and we each had to explain our eye condition to her. The first student that explained his condition had a very clear and consistent story. Then another girl talked about her eye condition and she had some very interesting questions that got us into some discussions on eye conditions and how they are interrelated. Kira started to talk about nystagmus (bouncy eyes) and directed her info to the other student and me, and I was like: why the hell do you think I have nystagmus? She explained how my eyes look when I fixate on people (or objects) and said that it could be a reaction to my having had very poor vision since I was little. I do know that the eye doc I saw in March, 2004 talked about my eyes moving but it being logical for someone who is blind, but no-one else ever told me my eyes move, and in fact when I asked my Mum and Sigrid, they said I blink frequently (I didn’t notice) but not that my eyes move, so it could be it’s just an involuntary reaction to bright (well, it wasn’t really bright when Sigrid looked at me, but what light effect I’m aware of is much less than what seems to happen) light. It would be something to ask other rehab folks.

We also got to discuss eye doctors and surgeries, particularly different doctors’ opinions on performing cataract surgery. Since I and the other student (the same one who has the nystagmus) both have cataract together with our primary eye condition, we had a fairly similar story about eye docs risking cataract surgery. It also got us into a discussion on eye docs’ attitudes to blind/low vision people. We may incorrectly assume that ophthalmologists deal with visually impaired people everyday, but they don’t: they’re not laypeople in that you have to explain medical terms, but they have hardly a clue as to the practical implications of vision loss.

Before this training, I’d thought about some things I wanted to ask Kira. Since I mentioned my question about whether or not to explain residual vision last week, I’ve wanted to have a realistic image of what my residual vision is actually like. You know that last week I had my doubts related to wondering about my adjustment, and after some deep thinking I decided that I at least wanted a realistic portrayal of what my vision (or the lack thereof) is like, so I could at least choose something other than the two extremes: to overestimate/exaggerate my vision and to pretend it wasn’t there. Therefore, I looked up the information in last June’s report about my residual vision and it said both that my acuity is light perception in both eyes and that I can perceive objects in my environment. Not understanding how these statements were interconnected and wondering if I’m imagining the objects I see sort of, or pretending I see them (I don’t think so, but throw in a statement about poor adjustment and there you are), I asked Kira to clarify this statement. She said that when someone has light perception it indeed means that one can tell dark from light, but that if one object is dark (eg. black) and the other is light (eg. white), I can tell that there’s an object by the difference between dark and light. Two students demonstrated this by standing near a white wall and then Kira asked me if I could see them and if I indeed saw two “shadows”. I did. She then asked if I could see that one student had a darker T-shirt than the other, but I couldn’t. Then the student on the left raised his hand and I could see something moving but it could just as easily have been a plug-socket hanging from the ceiling. Eventually, she asked if I could see the door, and I couldn’t. The door was very light purple and had almost no contrast to the white wall, for me. We experimented some more and Kira explained to me how it could be related to those “visual acuity is light perception” and “can see objects” statements and also pointed to some ways in which I might be using my vision. One interesting thing the folks mentioned was turning my face in someone’s direction. I indeed do that pretty well (if I don’t forget), and have at times wondered what technique I used, cause I indeed sometimes thought I did it partly visually - of course, also auditorily. It unfortunately isn’t polite, but if it were I could’ve tried facing people with closed eyes. Then someone said she’d wondered what I’m doing looking around when approaching sidestreets, and I said I looked for them. That would be another factor in whether to explain my residual vision. Then I remembered the time when my maths teacher approached me in the multimedia centre and said: “Man, is the sun ever bright, but you’re blind, you aren’t bothered by that,” while I had to close my eyes as to not feel uncomdortable due to my light sensitivity. I never even realized that when you say “I’m blind” and leave it at that, which was the information my teachers had gotten, you’ll even get comments like these when they notice you can see some light. I even got the question if I had any residual vision, which they apparently thought I hadn’t, from a residential staff member upon asking if we could exchange seats cause the sun was shining straight into my eye. It’s something I hardly ever realized, but that could also have been cause residual vision sometimes had an emotional significance that got me to mention it to make clear that for Heaven’s sake I’m not (totally) blind. At that same time, I’d overlook the reality of my vision or the lack thereof, ie. both the physical consequences of blindness and those resulting from the little bit of vision I still had. Now, I think I’m willing and able to be realistic and to seek the mean between the extremes I’d talked about before. The problem was that I didn’t really understand how some facts about my vision were interrelated, so I had to ask Kira to clarify those for me. Now it’s still important for me to understand what factors influence whether I should explain my residual sight.

Other things that I’ve noticed in these two lessons are the co-occurrent oddities that will be noticed about me. We had a little discussion on blindisms and other sterotypical movements this morning. I knew about the moving my hands everywhere, like feeling the paper in front of me, drawing lines on the table with my fingers, twirling my hair, etc. Someone also mentioned that I rock on my chair - something I never knew and was astonished anyone even did. Probably, I never knew what is being meant by “rocking”, cause I move somewhat, but no extreme movements like if you’re sitting in a rocking chair. Another student also told me I sometimes put my hand to my forehead - I’m more aware of that than the rocking thing cause I tend to hold my head forward when I do this, and I’m aware of this due to the things we do in physical therapy. It was very interesting to discuss this topic and to be told about my own behaviour - I knew the theoretical stuff Kira explained, but was hardly aware of what I did (except for the hand movements).

One student didn’t even have the chance to explain her condition to Kira, cause we’d used up all the time with our three stories, so Kira is going to come to the training next week as well. Then, we’ll also discuss a sort of step-by-step approach to explaining your vision impairment, and we’ll discuss our goals, cause we hadn’t been able to discuss them today cause the trainer hadn’t E-mailed the explanation to us yet.

In advance, I wondered if my parents would find anything interesting about today. After all, I’ve been blind/visually impaired all my life and I assume my parents have had this information stuff many times already. Afterwards, they said they didn’t really learn anything new but it was good to see what rehab is like and they just need to get this info every once in a while.

At first, we got some general info and watched a highly outdated information video about the rehab centre. They’re currently working on a new one. Then, we did something I’d dreaded in advance: the show room, with all sorts of aids and appliances my parents had known for ages, and some stupid simulation route even I found difficult. The only interesting thing seemed to be the demonstrations of what partial vision is like, which are not useful for my parents of course. Now I have some objections to simulations anyway, which I’ll write about more either later in this entry or in the next.

Then we had lunch - in a room apart, so no special tables this time - and then we got some information about sight training, mobility, and Braille. My parents participated in all activities, but I’m not sure if they found it interesting, cause almost none of it applied to me - sight training was only about lighting for me, mobility was so general it was not interesting for anyone who knows a little more than nothing, and I don’t do Braille. Then, I could guide my parents round the buildings. The unfortunate thing was that Mum would sometimes attempt to guide me instead of the other way round, while I knew the way better than she did. I showed them the creative arts rooms (unfortuantely, the person that teaches textural arts was busy), the computer practise room, the building where I have music and my training CPH and assertiveness (we had an interesting discussion with the music instructor and decided to take my keyboard to the centre sometime), and my room.

We then had a meeting with the occupational therapist and her trainee. At first, Tony explained what I’m learning in occupational therapy and why. Ellen added the info about “De Boomgaard”. Then Tony showed some appliances/aids. After that, we ate bread while my parents wore black glasses. This is where my paradoxical feelings about simulation come in. My Mum is an example of the first feeling: she spilled her water while pouring it into a glass and got the chocolate sprinkles beside her bread instead of on it. I don’t usually have much trouble with that, but since Mum is used to looking, she’ll fail when blind, while I’ve always been blind. I don’t feel it explained anything and knowing me makes clear far more than this experience, and since my parents know that they’re most likely not going to pick up the few useful things about this experience. Dad makes clear my contradictory second feeling: he applied the peanut butter perfectly, but admitted that he’s learnt the technique visually, while I’ve never been able to see. I just can’t put off my glasses and see alright. And the stupid thing is that I never needed Mum’s understanding, which I’ve always had, but Dad’s, which I won’t get cause my difficulties apparently are not blindness-related, or whatever. I don’t understand it myself.

Then we had a discussion with my counsellor. He explained what we were doing at rehab, we discussed the possible follow-up programme, and my father took the time to explain his blindness field skepticism - to someone belonging to the field! But I’ve noticed that more during my rehab process. The one stereotype he later said to me he saw, was that at rehab there’s more staff than clients, which he’s correct about - though most staff are part-timers.

After that, we had a meeting with Maartje, a mobility instructor. She explained what we’d done in mobility - I filled her in on what she’d forgotten. Then, my parents could walk with glasses “that simulate approximately what vision Astrid has”, as Maartje pointed it. I openly wondered how she could do that except to give us black glasses. They’d covered the glasses with some type of tape that allows lihht to go through but no view. When I put it on, I thought I wasn’t limited visually, but that’s obvious of course since it’s a pretty accurate description of my vision. My parents walked with it and again Mum was the worse one and Dad did it pretty perfectly. Mum made the comment that she was happy she could still see light. Didn’t I tell you so countless times? Not that I can’t do things non-visually, like orient, but it’s useful.

Finally, we ended the day with some chatter, I showed my Mum my room - she hadn’t gone with me when I showed Dad -, took some things home with me and went into the car.

I’m home for the evening, going to return to rehab tomorrow morning. We held our open house today and so my parents came. That gave me the feeling of a “visiting time” and as to not perpetuate my institution feeling, I decided to go home with them. Rehab is nothing like the blind institutions I’m used to, even though it’s part of one (Visio, one I’ve had pretty good experience with), but I sometimes just can’t shake off that feeling. This has in part to do with the fact that I’m living pretty nearby and am still a residential student. The folks advised me so, and I agree it has its advantages, but it also gives me a feeling of being institutionalized. I’ve never been a residential student before, not even at the schools for the blind. It’s not even the fact that I don’t see my parents or Sigrid during the week. That would be the same if I were just living on my own, and I don’t know if my decreasing interest in school affairs isn’t just cause I’m not at school anymore. It’s just… well, an irrational association, like I have so many. We discussed a follow-up programme or the like several times today. There’s this training home, sort of like a dorm but while you live there you’ll be trained in activities of daily living, called “De Boomgaard”. People have discussed it as a possible follow-up to rehab, to prepare myself for dorm life more practically. In itself, it sounds interesting - there are some objections to the way it might be organized, but I don’t know much about that since I’ve so far only spoken about it to my counsellor and the occupational therapist, who happens to work there part-time. However, I still feel that I ought not to need this. I had that same feeling about rehab, of course, but that was different: at that moment, I knew I didn’t have any home management skills, and now I do, only of course I can’t cook 120 meals. But what college student can? Is this one of these traditoinalities about rehab I’ve never wanted to acknowledge? I mean, does the fact that people at NFB centres eventually cook and serve a meal for forty people, mean they can cook whatever they want? They know strategies for cooking meals, but so do I. Then why do people who graduate from these centres think they can do whatever they want, and people here are advising me to do additional training before going out on my own? Or is it a good thing that they’re at least admitting their traditionalities? I don’t know, and I don’t know why I actually care. I cannot get a room in Nijmegen before the SSHN (Foundation for Student Housing in Nijmegen) is going to offer me one, or when I’ve found one through relatives (which I don’t have there) anyway, which won’t be before September, 2006, so why not use the time purposefully by practising more realistically than I can do in my parents’ home? I’m not sure why I feel that living with my parents is better. Maybe just for the image - I’m just still on a waiting list, it’s not cause I’m not independent enough to move out. Still, I know rationally that if I’m going to live with my parents till I move to Nijmegen, I’m not going to contribute much to the household. Not cause I don’t want to or my parents don’t want me to, but cause they still have some feeling as if I can’t really do it for myself, or cause they’re eager to help when it takes me longer or when I do things in an alternative way, and I’m in turn eager to let them help me. That’s more dependent, but it doesn’t feel that way. It’s a strange thing here, cause the question is not whether to move out or to go to that training home, but to stay with my parents or go to that home. In the several discussions we decided we’ll talk about it once again - the occupational therapist and I - and maybe we should visit the thing to see what it’s actually like.

On Wednesday, I had dinner with Ellen and Thony, the occupational therapist and her trainee. It was meant so they could give me some tips on better table manners. At first, I looked up to it, cause it reminded me of the school for the blind lucnh groups even more than the table for four persons did. However, the meal was surprisingly relaxed. I did get a few good suggestions, but overall it went quite well. I however don’t know if I’m happy with that, cause it makes me wonder why the residential staff still think I need that special table. On Friday at lunch, I sat on a “normal” table, but a residential staff member sat next to me and was constantly offering me assistance which I think other students could’ve just as easily done. It’s not about helping me do things like pour tea or make my own bread, which I can do perfectly well on my own. Or is it stupid to ask where the chocolate spread is? I indeed haven’t heard other students ask these questions, except for the students on the table for four, but the occupational therapist and her trainee both said that it was perfectly okay, and I’ve never had any negative comments by fellow students. If another student asks me where the water or whatever is located, I’ll help them as well - and this does happen. And besides, I think it’s more inappropriate to feel over the table for whatever you want to find, and that’s also what the etiquette says: don’t reach over the table, your neighbour is eager to hand you the [whatever]. Is there such a substantial difference between “Can anyone hand me the [whatever]?” and “[Name], could you hand me the [whatever]?” that it makes residential staff members sit next to me and take the duty of giving me the foods I want or asking the people who have them to hand them to me whenever I ask if anyone can hand me the food? Or is it something else? That’s the only thing I’ve noticed residential staff members do for me on that special table - hand me the foods I ask people to hand me. But when one of the other students asks for a food which I know is near me, I’ll be eager to give it to them. In fact, when the residential staff member who’s supposed to sit on the special table has not yet arrived, we always hand each other the water or, if it’s already on the table, the food, without much trouble. And we’re three nearly totally blind people who all have (supposedly) poor table manners, so shouldn’t it go much better if I’m one nearly totally blind student with supposedly poor table manners on a table with several students with enough vision to see if the food is near them and supposedly good table manners? Or should I just reach over the table, grab the pan that’s nearest to me, feel with the table spoon what is in it and put it on my plate if I want it and otherwise feel on over the table for the pan that’s not so near to me? Is that supposed to be independent? Cause I know that what I just said about people having enough vision, is a reflection of feeling that with more vision, you’re more independent on the dinner table, and hence, a bad attitude. That may be true, but then the residential staff have that same horrible attitude, cause they’re the most eager to say things like “the people on this table have very little vision” when a fourth student was about to sit on the special table so that no residential staff member could sit on it. I’m very confused: I don’t see what’s the problem about asking fellow students to help with some things - not serving yourself or that sort of stuff, even though many students are even eager to help me with that (but I don’t need them to) -, but apparently the residential staff think it’s a sign of not being independent (not even defining what is) and apparently see it as a reason to put you on a “supervised” table. Or maybe they have other reasons, but they’ve not clarified them to me and if the occupational therapist and her trainee have only a few suggestions, why do I need to practise them till I’m totally perfect at them? Do people get disgusted with my table manners? I’ve not had complaints, and if the residential staff have, then they should’ve told me. It’s all confusing and I still don’t know how to handle it.

I did some deep thinking about what it actually is that makes me feel afraid about not being ready for CPH training, and what changes I will have to make to be successful there. I talked about separating my poor adjustment from my communication/presentation abilities. That worked for a very long time, when, after the 1998 report, I’d decided I’d call myself blind cause it would mimic adjustment. However, what it actually did was to separate my feelings only further from how I acted, and this is not always successful. It works in simple instances like asking for assitance on bus transfers, but that is in some ways different from the accepting blindness and mentioning residual vision issue. On a side note, I was standing on the station at the line three bus stop, and a woman asked me how I knew where buses stop. “I ask someone,” I explained and I didn’t feel bad about that. That’s not to say I don’t experience problems asking for assistance anymore - last Monday’s mobility class went horribly, which I might write about later. But I’m getting used to the idea. That’s not how it works with adjusting to blindness. I’ll get used to presenting myself in a certain way - six years after I started calling myself blind, I cringe at the idea of anyone calling me partially sighted -, but when I actually have to explain something beyond “I’m blind”, I don’t even know how to do it and whether to do it at all. Yesterday, I thought that I might overestimate my vision cause of poor adjustment to blindness. I know that my poor adjustment is very situational - mostly I do quite well, cause I know what practically needs to be done and can then set aside emotional difficulties for awhile -, but I know that in order to feel at least okay with a realistic presentation and in order not to unconsciously make my presentation unrealistic, I have to at least want to see my vision or lack thereof as what it actually is. I did some writing from the perspective of the one that represents these feelings of poor adjustment, and even from there I want to see myself realistically. I notice an improvement in my adjustment that is really paradoxical: I cannot shake off the feeling that total blindness is not a correct description of me, even though I use it at times - like when someone asks what my cane is for and then asks if I’m totally blind -, but now I am willing to describe my vision or the lack thereof the way it truly is. I have absolutely no problem anymore saying I can’t identify colours, while I know that when I was at rehab last June, I somewhat pretended to see colours, but Laura (the sight trainer) knew that it wasn’t real. A few weeks ago someone mentioned still being able to see red sometimes, and I said that was the colour I could see the best, too, but that even my red curtains at home don’t look red to me. I can’t say what colour it is they look like - sort of red-like, but absolutely not the way I picture red in my mind. The problem is that I don’t really have a frame of reference, so I don’t know what I truly see and what is pretence - not consciously, but there are some things your mind’s eye can fill in. For example, on Friday Ellen asked me how many people I saw sitting on the table. I knew there were five, but I saw four, and that’s what I said. But when someone asks: “Do you still have some sight?” I don’t know how to explain and if I truly should. I want to do it correctly, definitely, and even the one that’s poorly adjusted to blindness wants to, but I don’t always know what is realistic. Like, some statements are obvious, but many are not, and there are people who consider it a sign of maladjustment that I even sometimes mention my residual vision, even when asked about it. Are they correct? I’m still not sure. Ellen made the comment that if I use my vision, then of course I should mention it, but she hardly knows me. Martin, the mobility instructor, emphasizes my vision pretty much, and I’ve continuously wondered if it’s not too much, and Mirjam, the sight trainer, was very confusing, wanting me to be aware of my light sensitivity issues while I’d previously not wanted to care cause I’m blind anyway, stating that if it worked for me, go ahead and use my vision in mobility, but
basically saying that that’s it cause I of course shouldn’t go and use my vision in situations I previously didn’t use it, which is something I obviously agree with. What is actually confusing about what Mirjam said, was that it’s seeking that happy medium between exaggerating vision I don’t have but still wish I had and pretending I’m totally blind cause I want to be adjusted. This is actually how I truly want to present myself with my blindness, but it’s difficult when having switched between these two extrems for such a long time. But I truly want to, and I hope I can sometime.

Yesterday, Charlotte Wyatt had her second birthday, and there’s good news for her: her Do Not Resuscitate order was lifted after her parents fighting in court against doctors who wanted her to have the DNR. Happy belated birthday, Charlotte! I’m so happy that the judge at least listened to the parents and not just to a hospital who wanted the DNR in case Charlotte would stop breathing, which she apparently so far hasn’t.

So, we have yet another Terri Schiavo look-alike, only this person, Jimmy Chambers, seems healthier. He had his accident on August 20 and recovered so well that on September 26 he was able to state his will to live, in an aware enough state of mind according to the treating physician. And still his wife wants him dead. And since there is no power of attorney statement and, in South Carolina, the wife automatically gets this authorityin such a situation, she almost had her way. And now we’re back in court to battle over whether a man who’s stated he wanted to live, has the “right” to die. I’m not sure if I have to believe that actually his communication devices, including the nurse call button, were taken away by his wife, since if that happened I couldn’t imagine why any court would not deny her guardianship immediately, cause this is obvious abuse. The sedating drugs being administered I can believe, but I wouldn’t think the wife had the intention of incapicitating her husband. I just can’t believe a wife of 58 years could be that cruel. But it’s possible… and I’m horrified by it. If this has to occur in order to make Chambers “decide” to die, I don’t care about his fifteen-year-old, revoked living will.

I had CPH (Communication Presentation Handicap) training this morning. It was very interesting but also seems like a very difficult subject. At first, we did some sort of introduction, although we mostly knew each other informally. The trainer had read the reports written about us before we started rehab and from there had drawn some conclusions about what we could learn in CPH. About me, she didn’t really know, but she asked each of us to rate how effective we were at explaining our disability, in both the medical/technical way and the practical one. I know quite much about the medical stuff and can explain this to people. However, about the practical situation, I don’t really know what I should and shouldn’t explain. Particularly, I’m concerned with when to mention my residual vision, that I definitely don’t want people to overestimate but that I do use noticeably. My parents say I shouldn’t mention it and see it as a sign of maladjustment that I do sometimes - and I can’t say I fully disagree, cause I may be using my vision too much. Earlier, we’d briefly discussed the effect of a vision impairment and using one’s limited vision on capabilities with regard to energy poured into tasks. That, combined with the fact that she said that when I use my sight this will be noticed, was a reason for the trainer to say sort of that it would likely be relevant to mention my residual vision. Of course, this is situational, and it is something we’ll discuss: we will have to do presentations and decide which would be the audience. Next week, a sight trainer will come in to help us - most are partially sighted - with some aspects of the presentation thing. Now, we’ll get a paper with some info on setting goals for this training and we’ll have to think of our goals.

As I explained CPH to Mum, she supposed that I was already good at explaining my blindness cause of having looked up the info. That’s the medical aspects, I said, but not the practical ones of what it means to me to be blind, which are relevant to folks like professors and fellow students. I think this training will be very useful, but I also have some doubts. That has to do with my not quite accomplished adjustment, but on the other hand I am very open to explore these topics and, emotional problems or not, practically I need to move on. I know that in both 1998/1999 and to a lesser extent in 2004 I decided that I couldn’t start at square one in this area, and, in fact, I’m not at square one. Sometimes I think I’ve so radically separated my poor adjustment from my communication/presentation abilities that I stand with one foot on square one (well, not totally at square one, since I’ve made some significant improvements already) and with the other somewhere on 5th Avenue. This has worked in 1999 and I’m far more eager to confront my situation and make necessary changes than I was then, but sometimes I’m scared that I’m still not ready for this.

I once again did some reading on Christianity and religion in general. I read over the United Methodist Church webpage and was astonished at the many rituals and doctrines it imposes, even bing a relatively liberal church. here are, of course, certain rituals, like baptism, I just can’t understand that God would impose so many laws upon us. There are, of course, certain rituals that are symbolic of a believer’s convenant with God, like baptism or the Holy Communion. Still, these rituals also serve another purpose: to form a community within the church. I, believing there’s a God/Divine, can’t say I’m a Christian, or Jew, or Muslim, cause I don’t follow the doctrines of any of these religions. I would have to profess faith in Jesus Christ in order to even claim to be a christian, for instance, and to be any more than just calling myself a christian, I would have to conform to certain rituals, like baptism. That’s understandable, as organized religion, no
matter how divinely-inspired it may be, still has a cultural component, and in this case baptism is the ritual by which we make clear that we accept God’s grace.

What I, however, don’t understand are all the judgmental beliefs about good or bad behaviour that different churchs hold. The Assemblies of God, for instance, have an extensive list of position papers on everything they consider immoral, and even the UMC has some greatly unnecessary social beliefs. I just don’t understand why churches, in 2005, would still stick to cultural norms held 2000 years ago just because they’re in the Bible. Isn’t believing about a journey on our way to finding God? And of course your religion’s holy book should be a guide on that journey, but I still, to this day, don’t understand why we have to interpret it literally. Because if we don’t, the entire religion has no merit, cause the religion is in that book? Just because parts of the book, eg. the Bible, are not accurate at this time anymore or are just totally incorrect (like the creation story), that doesn’t mean that it’s all incorrect, does it? Of course we can never be sure that one religion is correct and the others are flawed - that’s what faith is about -, but you can have that faith.

I was happy to find out that the United Church of Christ is not built upon many creeds and doctrines. They at least recognize that Christinaity is about a faith in Jesus Christ and about a journey towards God, not about cultural norms of 2000 years ago. I did not find these liberal communities of faith among other religions, but to be honest, I didn’t look for them. Now I know that the UCC has a very bad reputation among christians in other churches, especially for its not condemning homosexuals. I found someone at ProLifeBlogs condemning the StillSpeaking campaign for this very reason, as if condemning homosexuality is inherent in being pro-life. Well, it’s not, of course, and I assume that the UCC has no problem with abortion, cause they’re liberals, and most liberals have no problem with abortion, but that’s not universally so. I’m even more non-traditional than those, in that I’m not a christian, and yet I’m pro-life. Well, that’s another topic entirely, but it equally much signifies the stupid connotation of totally unrelated beliefs.