Astrid’s Journal

I just read this article from a website on deafness. In it, a woman argues that many deaf people have an “us vs. them” mentality because “the hearing world” tries to turn them into “normal” people by requiring speech therapy and lip reading, not allowing kids to learn sign language and by continually trying to pursue Cochlear Implants for all deaf people. She seems to think that non-disabled people are often harder on the deaf than on the blind, physically or otherwise disabled, because, as she states, one doesn’t expect a blind person to read print or insist a wheelchair user walks with cruthces “because everyone does so”.

I like the article, but for the sole reason that I don’t agree with it. The examples this woman gives about “hearing” behaviours expected of the deaf, to me aren’t comparable to expecting blind people to read print or wheelchair users to use crutches. I do agree that deaf kids should be taught sign language just like blind kids are taught Braille. And I think that in this respect deaf as well as blind kids are deprived of learning some skills: the deaf who are expected to speak and don’t learn sign language are deprived of the alternative communication mode that’s most useful for them, but the blind learn Braille (the “blind” reading and writing method), but they often don’t get instruction in things like handwriting. You may view it as odd that I think blind kids should be taught to handwrite, but at times they should be able to do so - for instance, they need to write down their names or signatures. I was taught handwriting, but that was because I was a low vision student in Kindergarten and grade one. Unfortunately, my handwriting deteriorated once I couldn’t see it anymore. I think, therefore, that it’d be difficult to teach blind kids handwriting (especially small handwriting, like in those horrible tiny signaure fields!), but I think it’s possible just like it’s possible to teach kids who can’t hear their own voices to speak.

As for deaf people needing to act like hearing people: that’s true for the blind, also. I mean, blind people rarely communicate non-verbally with each other, but we still need to learn to use non-verbal communication modes. I understand that - for instance, one needs to face another person when speaking with him so that that person can see one’s facial expressions -, but it’s an example of “forcing” blind people to act like the sighted. I’ve oh so often heard the words that “the sighted” don’t take a particular (visible) behaviour of “the blind”.

Lastly, the woman discusses Cochlear Implants. She says that she often gets the question why she doesn’t get one, as if a CI would be the magical cure for deafness. I can relate to this a lot: I don’t know how many people have asked me why I don’t just get glasses. They won’t benefit me, for I have no refractive error (my blindness is caused by a retinal disorder, and glasses can’t fix that). Now that I identify as blind, I get the question a lot less; probably people are aware that the totally blind can’t be helped by glasses. But when I still identified as partially sighted, I got the question sooo often and always had to say that I had too little sight for that (of course my sight would be correctable to some extent if it were caused by myopia, but I didn’t know any better).

I think that in general “the non-disabled world”, and especially those non-disabled people that are involved with the education and rehabilitation of the disabled, would want people with disabilities to act “normally”. And with deaf people this may lead to the idea that “just because they can’t hear doesn’t mean they can’t speak”, and with the blind it leads to the idea that “just because they can’t see doesn’t mean they don’t need to use ‘visual’ behaviour.” I find all of this to be appropriate, as long as it doesn’t go too far. And I’ve unfortunately seen it too often that it does go too far, so that alternative techniques are seen as inferior.

Astrid

In chapter 8 of Self-Esteem and Adjusting with Blindness, Tuttle writes in the third paragraph about independence. Here, he writes about several attitudes sighted people may have when offering help to a blind person, and about reactions blind people may display when help is offered.

Sighted People’s Attitudes

1. The Fearful Avoider: It’s hard to say if I encounter these people often, for it’s only the obvious examples that I’ll notice - I won’t see it when a person looks in the opposite direction when he sees I need assistance or when someone walks away upon seeing me struggle to find my way. I rarely encounter the obvious ones. If I did, I would probably feel a lot of hurt, even though this attitude may not have been intentional. I have, of course, encountered those that intentionally avoid my obvious needs for assitance, but that’s mostly because they (well, mainly my father and Sigrid) think that offering their assistance will result in an argument because of my poor reaction to help that’s offered.

2. The Forceful Dominator: I’ve all to often encountered them among strangers. Those that seem to feel urged to help and don’t think about how to offer that help. So often have people pushed me (literally!) into a certain (often the wrong) direction for they assumed I was lost (I often wasn’t) and wanted to help.

3. The Condescending Patroniser: This is not an attitude I encounter often, but when I do, it hurts a lot. These people may not act like this intentionally. Oh well, they have an intention to protect me, but I mean that they don’t realise that they’re degrading me. But as I stated in my post on attitudes towards blind people, I’m in a difficult situation here, for I’m often indeed pretty dependent.

4. The Reluctant Inquirer: This is probably the attitude I encounter most often among strangers. When I’m trying to find something in the supermarket, they’ll for instance ask: “Do you want to go to the exit?” At most times, I feel like saying little more than: “No, thanks.” At other times, I use this inquiry as a way to ask for the assistance I do need.

5. The Helpful Inquirer: This is probably supposed to be the ideal attitude, but I often have difficulty with it. I don’t know why this is - if it’s my lac of initiative, wanting to be independent while not being so, or not knowing how to react, or probably a combination of all of them and maybe more. But anyways, I like those inquiries for they’re the most helpful in gettin the assistance I need. “Are you looking for something?” is really the ideal question I can get from someone who wants to offer help when I seem lost, for it is clear enoughs o I know how to deal with it, but open enough so I can express my need for assistance. I think I should count that type of question among this category.

6. The Obligated Significant Other: I know that my mother and Sigrid often feel like this. Sigrid especially feels obligated to help me when she sees me becoming frustrated with something. For instance, last Friday I was making toast and burnt my hand on the toaster several times. Cause it hurt I screamed, and immediately Sigrid came to do the thing for me and tell me I shouldn’t scream cause I knew I couldn’t make toast without burning my hand. As if that makes it hurt less! As you might guess, I’d rather scream that folks should leave me alone than let them help me for the sole reason that they’re obligated by something or someone (often seemingly me through my getting frustrated easily).

7. The Available Friend: I’ve not had many friends, but I do know this thing of mutual assistance. The most noticealbe here were my friendships with kids at the schools for the blind. Kim (a friend in seventh grade at the blind school) at times had to help me get around (she had been at that school longer than I), but I helped her with academics. Unfortunately, the friendship ended when I was in eighth grade (at public school) cause I became too dependent (emotionally) on her.

Blind People’s Reactions

1. The Super-Independent Refuser: That’s been my ideal till way into tenth grade, and I still at times think I should be like this. However, as you might guess, I was never successful at this. Oh well, I’ve been in situations where I reached my goal without accepting other people’s assistance that was actually necessary, but then usually things take me ages. As a result, I’ve often come to avoid doing some things for they’d take me too long (as I didn’t have the skills to do them independently, but didn’t want to ask for help).

2. The Self-Conscious Retreater: Well, I discussed that above: have often been like this, simply avoiding a situation where I’d need to ask for assistance. This doesn’t really help me, for it causes me to lose even more skills to do the thing independently (when you don’t use it, you lose it) and it result in uninvolvement. I think this is not merely a problem of not wanting to accept assistance, for I’m sure that I’m indeed too dependent.

3. The Wishful Waiter: I have been like this a lot of times. Initiative is not among my strengths. This, too, results in things taking me much longer than they should. When travelling by train, for instance, I often take much more time than it’d usually cost me if I were to ask for help, just to wait for someone to offer their assistance. I think that I haveto learn to do this independelty, for next year I’ll have to travel by train everyday.

4. The Realistic Seeker: Well, as you might guess, I’ve rarely acted like this. It’s supposedly the best reaction, but communicating my needs is not really a strength of mine. Often I don’t even know how to get someone’s attention (for instance, when in the supermarket looking for something), or if I do I find it difficult to actually get to ask for the assistance I need.

5. The Reluctant Acceptor: There are those people that feel an urgent need to help when they see a blind person. Often these are the “condescending patronisers” or the “forceful dominators”, and refusing their assistance is difficult. Often I initially refuse, but when the person persists, I feel I have to accept the help.

6. The Passive Acceptor: This is not a reaction I’m really familar with, or it must’ve been when I was young (on my report cards, the teachers in grades two and three reported that a friend, Saska, did much for me I could do for myself) or at times, of course, just out of laziness or being finished earlier.

7. The Habitual Demander: The philosophy Tuttle describes that lies behind this attitude doesn’t sound familiar one bit - I’ve never viewed help as a “right of blindness”. Still, I know I often come across like this, especially to my family. This is partly due to my inappropriate (very curt) way of “asking” for assitance, but at other times I really don’t get it. I for instance am often reluctant to ask for help of my mother, and then she’ll say: “You should just ask!” Then I try to politely ask for help, and she screams: “Astrid’s ALWAYS needing somebody!”

After having looked over these lists and the one on attitudes, I realise that there’s much in my own behaviour that causes “inappropriate” attitudes in sighted people. And, for it appears I am aware of my inappropriate behaviour, why don’t I just change it? It’s something really complicated.

Astrid

I have a very bad cold! Started yesterday but now is worse. *Sigh* I also have a headache. By the way, no pain in my eyes so far.

Pfff, have a lot of work to do. Project on British Idealism and a bunch of Dutch writng assignments. Blegh! But yeah, has to be done huh?

Astrid

I found this great essay by a woman with paralysed legs, and, even though I have a different disability from hers, I recognise a lot in what she writes. Her resistance to seeing her disability sounds familiar. How often I’ve screamed to my parents or teachers that I’m not blind! And often it’s been another person challenging my statements about what I could see that made me realise the reality of my blindness - basically, that I see a lot less than I think I do. Like this doctor in the article, many people have “tested” my sight by askign what colour something was, what some object I said I could see was etc. It has always been difficult emotionally (and still is difficult), but it’s helped me get a more realistic idea of my abilities and limiations where it comes to sight. Few people have really wanted to convince me that I was totally blind, but for that matter many, since around 1995, have tried to get me to adjust to blindness rather than “partial sight”.

As for trying to hide oen’s disability from being visible, I of course was never good at it. When I don’t take my cane with me,it’ll always be noticed that I’m “different”. I think it’s different from the physically disabled who try to hide the “deficits” in their appearance, for my blindness doesn’t really alter my appearance - or it must be for my eyes looking somewhat different (the right one from surgery and the left one from the cataract). I cannot hide that, and I don’t feel like doing so either. This woman put her braces aside at times to prove to herself that she wasn’t paralysed. I think this is similar to what I did with the white cane - trying to prove that I could move (safely?) without it.

I think that, as she states, being accepted by other people - and, for those that are religious, feeling that God loves you -, greatly contributes to one’s self-acceptance and adjustment to the disability. Like this woman said, when she had to wear skirts at work, her co-workers didn’t judge her for the visibility of her disability. I think it always helps to realise that one’s equally lovable (in the broadest sense of the word) with or without the disability, and certainly hiding or denying my disability has in my experience not had a positive influence on my acceptance from others.

Astrid

I said I’d talk about “low vision classes”. Well, I had them in fourth grade. Initially, I din’t attend them, but in November I myself asked about them. Somehow, I was permitted to attend them. My first “lesson” was on December 5, 1995. I can still clearly remember the teacher: she was an older woman who looked even older, had a loud, low voice, and seemed always to be grouchy. I can also clearly remember the games and activitiers we did. There were, for instance, computer games where you saw a picture of a face and something was moving (the face was sticking its tongue out or blinking its eyes or something) and you had to see that. We also did a lot of CCTV (Closed Circuit Television) reading. Initially, the lessons took 45 minutes, but cause my eyes tired easily, it was lowered to 15 minutes a week. I don’t remember what happened to the “low vision classes” in my fifth grade year and beyond, cause I didn’t get them anymore and I cannot remember Arjen (another “blind with sight” guy in my class) attending them either.

Astrid

As far as I know, the teachers at my first school for the visually impaired in Rotterdam (grades 1-3), had few objections to me being visually oriented. In my first year, I used large print just like most other students. When I started learning Braille, a special teacher had to come to teach it to me. Likewise with mobility instruction. I don’t know what the regular teachers thought about my sight and the way I used or didn’t use it. My classroom teacher was the one to tell me that I had to read Veilig leren lezen 8 in Braille, but I don’t know how I reacted. (Veilig leren lezen is a series of books for leanning to read.) In fact, I cannot remember having particular difficulty with being blind, but I think this is more cause within me there was no recognition of the fact, whereas in fourth grade and beyond I well knew I was blind but denied it. I haven’t read the 1995 report the remedial educationalist I told about wrote about me, but in her 1998 report she says my difficulty accepting blindness gives about the same image it did in ‘95. That’s weird!

My teachers in fourth grade and beyond were more outspoken in their attitudes about my blindness and my adjusting to it. In the fourth grade, I had two teachers. I remember both, but mostly the male teacher of them, as wanting me to learn alternative techniques but accepting to some extent that I used my sight. I think in this respect it’s an advantage that this was a Braille readers only class, so that there simply were no large print materials available. I wish they’d stuck with the model of separating at least classes for the partially sighted and the blind, but the schools have too few students for doing that now. Where it comes to Braille, the teachers treated me as if I were a recent Braille starter. To some extent that’s indeed true - even though I’d started to learn Braille at the end of first grade, I didn’t get to use it full-time till third grade -, but I think a large contributor was simply my resistance to it. The teachers so to speak wanted me to use alternative techniques, but they recognised I had residual sight. I was, for instance, permitted to attend “low vision classes”, but will discuss that later.

My fifth grade class was a combined Braille and sight saving class, and that permitted me to use large print materials a lot. Not that it was efficient for me to use them, but my fifth grade year was a time when I had really great difficulty accepting blindness. As far as the curriculum goes, I had to use Braille of course, but because I was often ahead, I was permitted to do things for myself then, and often went to work with the Grote Lijn Atlas (a large print atlas). There was another student, Jaap, who was also often ahead of the curriculum. He was partially sighted. For we shared a mutual interest in geography, we often worked with the Grote Lijn Atlas together - he could see the things on the maps I couldn’t, and I had better knowledge of the geographical facts. When I look back, I don’t see my work with the Grote Lijn Atlas as anything academically interesting - it was just showing I had the sight o use the atlas. During my fifth grade year, I can also remember often letting know that I had residual sight. This was not always wanting to show off. There for instance was a “great move” around Easter because of many people being light sensitive or just requiring much light.

Sixth grade was different. My sixth grade teacher had few positive qualities, but one was that she didn’t permit me to use the Grote Lijn Atlas. I once brought along my magnifier to geography class, and after five minutes of pretending to see things on the large print map, she insisted I put the thing away and go work with the tactile maps. She never actively tried to get me to accept blindness, but she did show that I couldn’t use the “sight saving”materials like large print stuff. Further, I cannot rememer her making any references to my sght whatsoever. She did acknowledge that I was poor at alternative techniques - mainly orientation and mobility -, and she did actively try to motivate me for them - apparently, she recognised that it wasn’t a lack of ability that caused me to fail on them.

Speaking of O & M, my mobility instructor was as I view it now great. He actively tried to motivate me to go for it, and I don’t view my two mobility certificates (I never earned my travel diploma, which most students at the schools for the blind do in sixth grade), one for crossing streets (wew, I hated that!) and one for a familar route, as anything more than an indication that I took at least some efforts in O & M. I think the instructor did recognise quite well what role my residual vision played in mobility - that is, I always wanted to use my vision, not the cane. He repeatedly wrote on my report cards that I used my vision too much, to which I’d react that I after all did have this vision (!!!). I can slo remember the instructor one day wanted me to use a small cane called a “recognition cane”. This type of cane is not meant to use for navigation itslef, but so that people will see that one’s visually impaired. I always thought it was illogical that the instructor who kept saying I used my vision too much wanted me to use such a cane, but maybe there was some irony in it. Who knows?

Astrid

What, exactly, caused me to grieve my recent vision loss? I don’t know if it’s normal with my eye condition, but my sight has decreased gradually even in the times between my complications (1993, 1994, 1998 and 2004). Then, why, am I especially feeling bad about this recent vision loss, while I’ve lost much of my vision before?

I think it’s partly because of having an explanation for my vision loss, ie. the cataract. Statements like “everything changed radically on March 4,” support this. Why March 4? As if the cataract developed on my eye spontaneously at that specific day! I think that having an explanation made the situation more real. In early 2004, I did notice vision loss, but I didn’t pay much attention to it - I’d always lost sight gradually. There must be a term for this in psychology, for I’m sure it’s fairly common for people to really experience a difficult situation when becoming aware of its reality.

But it’s not everything. After all, with the initial discovery of the cataract I didn’t really have difficulty. Initially I did, of course, but even in a few days I’d gotten to somehow get over it (rationalising that I could still appreciate sight, and doing so). When I had the pain in my eyes a short while later, and went to the doctor with it, I by no means intended to ask the eye doc about the cataract, which I by the way viewed as not a possible cause of the pain. The ophthalmologist ignored it, but Dad asked about it. When the eye doc more or less assured us that there was little reason for me to have cataract surgery, it was good to know that an eye doc found so as well, but I hadn’t sought his advice.

The actual grieving over my vision loss didn’t happen last March - it started in July and I’m still in the midst of the process. Besides that I have a condition to blame it on, it has to me little to do with the cataract. It might of course well be caused by the cataract, but I don’t know. All I know is that I’ve lost vision and, which I think contributes the most to this whole stuff, have crossed another line I’d set for myself, now that I cannot see colours anymore.

That setting a line thing seems much like competing, but as you already know I indeed do compete - I compete with myself. And as the trees suddenly appeared black in the summer of 1998, while I’d previously seen and known that they were green, I was happy that at least I could still see most colour. In 1999, I had a vision check cause I was leaving the school for the blind, and I could correctly identify the colours the papers the ophthalmologist was holding up to me had. Some colours were difficult to distinguish, but I never confused those that are obvious to tell, like red from green or blue. Now I do. Guessing the colour of Michelle’s shirt at the summer programme incorrectly made me damn aware of that. I’d previously been able to say that I had “some colour perception”. I viewed that as not everything was black and white I must have some colour perception. But who knows, maybe I’m guessing all colours incorrectly. For it wasn’t just Michelle’s shirt, but many other things of which I identified the colours incorrectly - usually, interestingly, seeing them as red when they’re blue or green, not the other way round (but what red things that I didn’t know of that they were red have I seen lately?).

At times I really wonder: when did this decrease in colour perception occur? I think it must’ve been gradual, but why does it seem as if it was sudden? Like with the black trees in 1998. That also seemed sudden. Half a year ago, I would not give my notice that I had light, colour and large object perception a second thought, and now I view virtually all my colour perception as gone. It’s something weird, and I have great difficulty with it.

This is partly because it was the line I’d set for myself in 1998 - I could (unconsciously) deny my sight was decreasing until this happened. I think I cannot set another line for myself except when all my sight will be gone. Then, at least, it would be the last time I had to go through this. I cannot think of any further decrease in sight, except for loss of more object perception. That’s happened also, but it’s less noticeable to me - and much easier to deny, for objects can be perceived with other senses also (and hence seeing can be pretended).

Tuttle discusses the way amount of vision and stability of sight affect the adjusting process. He states, among other things, that some people who are losing their sight do not acknowledge this until their sight has reached some particular point. He takes as an example people with diabetic retinopathy that don’t acknowledge their vision loss until they’re legally blind. While Tuttle speaks here of people who were once sighted, I think that this setting lines thing is quite similar to that - my sight loss doesn’t bother me too much until it’s reached some point, in this case that I’ve lost most of my colour perception - one may debate over what “colour perception” is here, cause how I see things is not just black, white and grey, but I cannot distinguish between colours that are clearly not the same, and when I lay objects of these colours (let’s say, blue and red) next to each other, I can see they’re different colours - and more object perception. Some simple things have caused me to be frustrated with my vision loss, such as the time in August when I could hardly see the frontdoor. I always assumed that vision loss would be sudden or not occur at all, and if it were gradual I wouldn’t notice it. And if it were sudden, I could point to the exact moment when I lost what ability, which I cannot now. But still there’s a point when my loss has become so great that I must acknowledge it and I get to grieve over it. It’s still difficult to understand.

Astrid

According to Tuttle, trauma is often followed by shock, in which state a common defense machanism is denial. About this, he writes the following:

Denial can demonstrate itself in at least two forms of denial, either of which can be partial or full (VanderKolk, 1981). The first is a disbelief, a refusal to acknowledge, a rejection of the fact that a trauma has even occurred. It can be denying the very existence of the trauma, the seriousness of the trauma, the impact of the trauma, or the feelings of the trauma.

I have partially utilised this “strategy” a lot of times. I think I should account among this also the many, many times that I’ve showed off about my sight, because the only purpose this served was to mask how little I could actually see. Although competition in terms of sight was part of this, it was for me never a way to show how much sight I had to those that had so much less than me - rather, it was a way to deny my actual blindness. When I was young, I indeed did at times look down on people for the sole reason of their smaller amount of sight (or so I thought), but as I became older, and certainly in thwe 1998/1999 school year and this summer, it was an individual competition, where I sort of competed with the “me” who had much better sight than I actually did. I have never denied my blindness altogether, but I have often denied the seriousness of it. As a remedial educationalist wrote in a report of a 1998 evaluation:

Between the lines at the AGAS [General Disabled Person's Attitude Scale] and in chats emerges that Astrid has adjusted reasonably to the fact that she has poor sight, but still has great difficulty with being blind. She for example says that she does say that she’s visually impaired, but not that she’s blind. “But actually I am,” she softly adds. Possibly having been able to see better as a young child has to do with this.

These statements have greatly shaped my attitudes about my losses of vision both in 1998 and this summer, but not really to the positive: I have been trying to convince myself that I shouldn’t care about this stuff, cause I should’ve adjusted to blindness long before (and this year, I thought I had). I don’t know what I shall think of this: on the one hand, it seems as if my poor adjustment is a behaviour problem and nothing more than that, and that I just need to quit this overreactive behaviour. I think it isn’t just that: it’s a problem I should get over, but I think I cannot just suppress these feelings. They’re more than behaviours - they’re emotions, and these emotions are not too great for the situation. But is denial or rationalisation (the vision loss is from the cataract, the pain from a cold and the flashes are nothing to be worried about), and hence making the issue less “real”, a solution? Anyhow, I can’t just do that, cause if I want to enjoy my sight (which I want, for I may lose it at any moment), I keep thinking about it. Hm, does this seem like a circle?

I’m not sure yet what I should think of my difficulties with this current vision loss. I’m way too dramatic at times, I realise, but suppressing my feelings makes no sense either. I hope my sight will remain stable at least for a while. It’s highly unlikely, and I realise now that I cannot count on it. But is it a maladaptive coping strategy? I think it is to some extent, for, as I reason, now I have lost sight, but I still have some sight and hopefully I’ll retain this. Tuttle further writes:

The second is an unrealistic expectation that a miracle from God, a medical procedure, or a new scientific discovery will restore vision.

It’s difficult for me to admit that I’m guilty of this at times. Oh well, at times? Quite often. I play many “if only” games in my head, and they always center around hopeful, optimistic eye docs and for e unrealistic improvements in sight. I say “for me”, for I never dream that I’ll be sighted again. In fact, the improvements my “if only” games center around have occurred to people with my eye condition and my amount of eyesight - to Sarah, for instance. But neither my surgery of 1993, nor that of 1994 have been successful (or only for a few months). It’s also for this reason that I think (rationally) that it was a wise decision of mine not to have treatment anymore. But at times I play these “if only” games that seem too realistic, like wondering what would’ve happened if, in these two hours on March 4, I’d decided to go for treatment of that cataract. It’s useless to think that way, I think. I decided five years ago not to have treatment anymore, and I affirmed this last March. But at times, I remain in this hopeful situation. And then, it haunts me that I have a condition that is in fact treatable (cataract) and that it was my choice to leave it the way it was. I’m not talking about a miraculous cure (although my hopes are indeed unrealistic), but I’m talking about something possible. And that makes the issue even more difficult. But still I think that whether I’d have had treatment or now that I’ve not, I’ll have to learnt o accept the prognosis of total blindness. One never know what would’ve happened if I did this or that. I cannot go on rationalising the vision loss, pretending that it’ll be the last loss of siight (that’s the only advantage of going totally blind), or dreaming of for me unrealisitc improvement. It’s difficult to get over this, but I hope that having admitted to myself that I have these feelings will be a step forward. As I determined last week, I’ll work through this.

Astrid

In chapter seven of Self-Esteem and Adjusting with Blindness, the adjusting process of blind persons is discussed. Phase one is what is called “trauma”. I don’t like that term, for it seems pitiful, but it is what it is: the onset of, or awareness thereof, a particular serious physical or social problem, in this case either the onset of vision loss or the discovery of a new implication of one’s blindness.

First, Tuttle discusses trauma in the adventitiously blind, ie. those that became blind later in life (medically defined as after age five, but one may question the accuracy of that). He discusses, with excellent examples, the way the onset of blindness or the awareness of this onset (so, for instance, the diagnosis of a possibly blinding disease), affects the patient himself and significant others. He correctly states that, the older the person is at the onset of blindness, the more severe the trauma. Adults may already have formed negative attitudes about blindness, that may influence their adjustment once they themselves become blind. Children who were born blind or whose blindness came at an early age, don’t yet have these attitudes. However, this is also a situation that I’ve seen occurred with congenitally visually impaired folks who later lost their sight. And I myself must admit at times having similar feelings. Although I know there are many totally blind people who are much more competent than I am, I still at times fear losing this little bit of sight cause I somehow associate that with becoming even more dependent than I already am.

Then, Tuttle goes on to discuss the traumatic experiences congenitally blind people may encounter. He starts by considering the awarenss blind children gradually acquire of their being firstly blind and secondly different from the sighted. I cannot remember how exactly I got to realise I had poor sight. I do remember one day walking through the mall with Sigrid and Mum and maybe Sigrid or Mum saw something interesting that I couldn’t see. I was about five-years-old then. But I think what really made a huge difference was when I was going to the school for the visually impaired in 1992, and starting to learn Braille in 1993. I can remember being pretty reluctant to learning braille. I can also remember having some realisation of being “different”. Kids would repeatedly ask me how many fingers they were holding up to me. And they’d call me a “blind chicken”, to which I’d respond that I wasn’t blind and I wasn’t a chicken. After all, I was a girl and I was only visually impaired.

Tuttle also does some suggestions for significant others to support blind people in the state of trauma. The first couple of paragraphs deal with the diagnosis of adventitious blindness and are not really relevant to me. Then, Tuttle goes on to discuss people’s tendency at times not to speak openly about a topic related to the trauma. That’s something I’ve encountered quite a few times, especially with complications of my eye condition. In 2001 (when a cataract on my left eye was suspected) and in March, I sensed there was sort of a reluctance in my parents to talk about it. I think they had the idea that I wouldn’t notice it anyway, or I wouldn’t pay attention to it, if I didn’t have an explanation. Well, that’s incorrect - I still wonder if I didn’t really have a small cataract in 2001, cause indeed I had the idea I lost vision, and in the begining of this year I did sense I had lost sight suddenly -, but of course getting an explanation indeed made it more “real” - yes, I was losing my sight (last March). That’s also why I like to blame this summer’s sight loss on my cataract - it’s some type of making it less real.

As for social traumas, Tuttle suggests that people be somehow prepared for the possibility, or having an explanation. But it is often difficult for significant others, he says, to recognise when a blind person experiences a social trauma, for the blind person may not share the experience with others. I think it’s understandable that this is difficult, for a social trauma is often not as obvious as the physical trauma of blindness. On the other hand, I can imagine blind people may not be willing to share these experiences with others, espeically with the sighted, for they may not know as much about blindness and its implications as the blind persons do, I think.

Astrid

In Self-Esteem and Adjusting with Blindness, Dean Tuttle lists several attitudes the sighted can have regarding the blind, and how these affect relationships and ther blind person’s self-esteem.

1. The “It”: It’s rare that people really have treated me like an “it”, but it has occurred. Too often, strangers will approach y sister or mother when I’m being with them: “Is she blind?” “Yes, I am,” I will say before Mum or Sigrid can respond. At other times, they’re not stranges that treat me like an “it”, they’re relatives. In those situations, it’s often me that caused this attitude, because people get sick of my dependence - or better, of my lack of appreciativeness of their help (which I can philosophise and rationalise a lot about, but am not going to do so now) -, and then see me as a chore. I can remember one day in eighth grade freaking out when someone had forgotten to take me to P.E. (we had to go there by bike) and then another boy told him, referring to the chore regulations: “Three times.” At the time, and even in November of 2002 when I mentioned the situation in the article What I Realised, I did not recognise the reasons that could’ve caused this. And still, knowing I caused the attitude myself doesn’t make it easier to deal with it.

2. The “Blind”: Attitudes based on stereotypes are common among everyone, strangers and relatives alike. I read someplace that people use their sight in eighty-five percent of their activities, so that would be a reason for people’s overly negative assumptons abut blind people. I think I need not add much explanation here. The one that once asked me how blind people use the bathroom was obvious enough: am I ever happy that I don’t need my sight to go to the bathroom! This was a stranger, but unfortunately there are also those attitudes among my relatives that represent stereotypes. They, for instance, express doubt about whatever I want to do for myself. These doubts have obviously influenced my concept about myself, being that at times I’m really astonished when folks will allow me to do something, fo example when I was allowed to attend the Model European Parliament (a debating contest) in tenth grade. I think I’ve become too familar with this stereotypic attitude, assuming it in far too many situations. For example, in tenth grade I was a candidate for a position on the board of the newly founded Apeldoorn branch of the Socialist Party. I advance, I’d prepared extensively for what if my blindness would be a problem in my candidacy. Well, my political quality (or lack thereof) was the only reason I was advised to withdraw my candidature.

But I myself also hold stereotypical ideas about the blind, and espcially the totally blind. I think the competition I talked about earlier contributes to this, and so do my encounterws with totally blind people whom I viewed as less capable than me. They ay have been less capable only in a few areas and much more cpable in others, but I looked down on them and made their total blindness an improtatnt defining attribute, to which I linked my negative image of them. When I visited Sevinc last month, I was confronted with my own attitude about total blindness, when I asked her if she had any residual sight: she doesn’t. I knew she didn’t, but I somehow couldn’t believe it - she was so competent! I know my attitude towards her was stereotypical and my encounter with her made me damn aware of the way my attitude is flawed.

3. The “Superblind”: I really hate that attitude! I encounter it way too often, mostly among strangers or semi-strangers, like cab drivers. They will be astonished when they hear I’m at public school, can use a computer, or even can find my way from the cab to my own house independently (it’s 20 feet!). That’s also why I hate most large family gatherings: all those uncles, cousins and great-aunts that will call me brave, remarkable, or wonderful when they notice some simple accomplishment of mine! They could never do whatever. Well, there are lots of blind persons that accomplish greater things than I do. But I’ve also had people who had known me for years not recognise this. My math teacher is great, but one quality of his that I really hate is how way too often he likes to tell me what great respect he has of me. That’s nothing to do with not liking to get compliments - it’s
simply inappropriate. All this ungrounded praise also emphasises the idea that I’m not normal and will never be. Even recently I was eager to use my blindness (or have it used by others) as an argument why some of my not-so-great “accomplishments” were satisfactory. But realising I can’t and shouldn’t do so by no means inflates my self-esteem, for it makes me feel bad about not being capable enough. It still is a regular theme for the “ladies” to fight over.

4. The “Needy Blind”: At times, I hate this attitude. That’s logical, I think, for the idea to be viewed as dependent, to be pitied, to have others feel the need to care for you, is derogatory. But here I am in a difficult circumstance again, for it’s often way too correct to see me as dependent. I know that often people don’t feel great about caring for me, and often it’ll make me feel like screaming that they should go away and stop pitying me!

5. The “Capable Blind”: I don’t really like relationships like this either. I don’t know exactly why this is. Maybe because they still emphasise blindness. Or maybe because I often am not as capable as these people think I am - cause they often are the ones just expecting me to be capable, not the ones that help me to become capable.

6. The Person Who Is Blind: This is a relationship I crave! No quote signs in the title of this attitude (in the book, all have quote signs), and that’s intentional, because such a relationship wouldn’t be based on stereotypes. It’s very rare for me to have such a relationship. They’re only the people who really know me that will often display this attitude, but even these people will at times hold tremendous stereotypes about me being a blind person. But I think that it’d be difficult for me to have such a relationship, for I myself view my blindness as more than just one of my characteristics.

7. The Friend Who Happens to Be Blind: I didn’t have any sighted friends since I was around eight. And I think the reaon of that has very little to do with blindness - much more with the fact I’m not too sociable (litotes), and with my attitudes about many things, including blindness. Why I was always able to make and keep some blind friends, I don’t know. Maybe it has to do with the less dependent position I have in a relationship with blind people.

Astrid

Ps - My eyes hurt terribly and I have had a great increase in the occurrence of flashes and floaters lately.