Astrid’s Journal

In my previous entry, I was once again presuming that my behaviour problems are serious, no matter their cause. I am in a weird situation with regard to this. I’ve not had really horrible moments since last October, but there are many times when my tantrums got really out-of-hand but that are less extreme. I see Sigrid displaying that same behaviour at times, but they’re a lot less frequent than with me. And with her, it’s a relatively recent issue that one can attribute to adolescence. With me, it doesn’t seem to be.

I just want to know that it’s over, that it is indeed just an extreme form of adolescence that caused these problems. I’m not usually open about my history of behaviour problems, and when I am, I often tell folks that it’s over now. I wish it were. This just makes me feel so weird, for it is one thing in which I truly want to be “normal”. I’m feeling really ambivalent about this stuff: if it is something serious, I want people to acknowledge that and not pretend that it doesn’t exist, yet at the same time I want to be able to hope for the possibility that I’m really not troubled at all and just can function as other people whose only disability is blindness do.

This has become especially worrying now that I’m going to rehab in the autumn. Sometimes, I just fear that it’s going to bbe too difficult because of these other issues. I know that I’m not going to fight with folks there (I only fight with my parents and sister), but what if I get overwhelmed with a situation? I even experienced it a couple of times at the summer programme, but then it was acceptable cause we were just teenagers or something like that. Now it’s not going to be acceptable cause one’s supposed to be an adult. I also know that the folks there were eager to explain all my frustrations by blindness-related issues, and I don’t know if that’s correct. I somehow hope it is, no matter how vaguely, because that makes me feel as if I’m still a normal blind person.

Sarah sent me an article on stress and trauma in preemies, that I think is interesting. It discusses possible traumatic effects of the NICU experience on former preemies and the subsequent psychiatric outcomes. Very little research has been done in this area. I know one kid who was diagnosed with RAD (Reactive Attachment Disorder) and whose docs assumed it came about due to the many serious medical procedures he was subjected to as an infant. I also know some other people who think some of their issues are related to NICU experiences. I don’t claim such a connection, because I have no reason to claim one. Still, this article makes apparent that these factors should be considered in reference to preemies’ psychiatric or behavioural outcomes.

This is particularly important when discussing preemies with disorders of which the aetiology is not exactly known. Some kids may present with ADHD symptoms, for example, but no notable neurological damage that could have caused their ADHD. As a person who did have neurological damage (I had a brain bleed, probably in the NICU but not sure), I would not have needed to go into such vague explanations if it appeared I’ve always had my behavioural problems, cause I could easily blame them on the neurological damage. The thing with my issues is merely that no-one seems to know whether I acquired them later in life or have always had them. I don’t know if that’s significant to know - I sometimes think it is, but at other times I think: man, I don’t even remember what my situation was like before about age seven (I have memories from before that time, of course, but no consistent ones), so it makes no sense to care. Somehow, still, I feel that if this stuff is acquired, it’s easier to get rid of it, like, if it’s something in the way my brain is wired, I’ll definitely never get over it. That’s a myth of course: firstly, people with neurobehavioural problems do learn to adapt to them (I should’ve hung around in the Aspie community long enough to know that), and secondly, I know quite a few folks who acquired their emotional/behavioural difficulties and didn’t get over them, even having the advantage over me that their issues were addressed (mine never were).

I think this article makes quite a bit of sense in some ways. It points out that it is in fact possible for infants to be affected psychologically by their NICU experience, while very few people actually acknowledge this. I don’t know what significance this would hold for these children, who have no cognitive memory of the experience, but I know some folks who claim it holds significance.

The article especially stresses the importance of a healthy parent/infant relationship. I did sometimes connect attachment issues to prematurity, though I cannot say how much of it is actually related. Again, if I did appear to have some neurologically-based disorder, that could just as easily impair attachment, as with autistic children. Like the writer of this article states, it’s not really appropriate to assume that preemies will get PTSD or the like, but it is appropriate to inform parents about the risks preemies suffer with regard to psychiatric/behavioural issues.

As I was updating my page on prematurity yesterday, I got to think of the idea of preemies as survivors. Many of us former preemies claim survivorship, take pride in it and yet also recognize the effect it’s had on us. I have no problem with the Dutch word for “survive”, which just means “live despite life-threatening conditions”, but I tend to feel uncomfortable with the English word. Literally, of course, we’re survivors, as the odds were pretty much against us in our early lives. All of us survived despite a large number of babies in our circumstances having died. We were all “at high risk” when we were newborns, and yet, we live.

But in English, survivorship means so much more than just living despite life-threatening conditions. It connotes that there’s an aftermath to the literal survival. I think it’s pretty much gotten that meaning from the meaning as with abuse survivors: some did endure life-threatening abuse, but some did not, yet they all carry the aftereffects of their abuse. In this way, I’ve seen people consider preemies survivors, too, but all they highlight is the physically fragile state in which we were and the medical treatments we received. To explain how prematurity still affects me today, is very difficult: many people are eager to contend that the medical treatments I received could’ve been physically traumatic and hence still affect me (I know folks who claim this, but I’m not among them), but to explain how prematurity has its emotional/psychological effects, is very hard to do to those that haven’t been in critical health in their early childhood or families of those who have. Even that is a little more difficult, cause it is so much more logical to assume that prematurity had emotional effects on the family than on the child herself.

What I mean, is that prematurity or otherwise being at high risk in early childhood, has profound effects on the entire family. There’s been written much about the physical limitations preemie children experience and about healing emotionally after having a child born prematurely, but there is hardly any information on the effects of prematurity on teens and adults. And what has been written about them - there’s some research about preemie teens, one project of which I even participated in when I was fifteen -, is mostly to warn the medical profession about the risks of allowing smaller preemies to survive. Doctors here use these statistics to determine that they won’t treat preemies born before the 25th week gestation. Yet no-one seems to care that these people who participate in the “warn the doctors” projects, are actually *people*, not just figures and statistics.

As people who were formerly preemies, we do still experience the aftereffects of our being born prematurely. We survived against the odds, and, in my opinion, we’re still survivors: many of us have physical problems related to our prematurity, and some of us consider our premature birth to have had an indirect effect on us emotionally. Even though I feel a little uncomfortalbe with the term “survivor” in its figurative meaning, I’m not content with the simple statement that we’ve continued to live despite our critical health and that’s it.

I got as book from the Dutch library for the blind which is a collection of interviews with women with disabilities. One of these interviews struck a chord with me. It’s with a severely hard of hearing (nearly deaf) woman in her early thirties. Many things of what she describes have been similar for me and that makes me think about my own situation and the classic “deaf vs. blind” issue.

The first thing that caught my attention was this woman’s struggle to get a proper education. There appear to exist HAVO schools for the deaf/hard of hearing, but she could not attend one cause it was too far away. Her parents even had to fight to get a MAVO (lower level high school), cause the domestic science school would be too low-level for her. It was, however, assumed by the school that this woman wasn’t intelligent, which she attributes to her being the most severely hearing impaired in her class. That wasn’t the case in my school, cause the blind and partially sighted were educated in the same classrooms, but of course I know lack of stimulation in school. Eventually, however, this woman did go to college, and now she’s working as a social worker or the like.

Another thing that I can relate to, is the competition going on amongst the hard of hearing: this woman had the most severe hearing loss, so she was excluded from her peer group. I, however, don’t remember this happening much when I was still at the school for the partially sighted in Rotterdam: in fact, I don’t remember being a social outcast till third grade. The competition was far more evident at Bartiméus, but I don’t attribute my social trouble to that. This woman does say that deafness did have an effect on her social skills, in that she couldn’t pick them up as incidentally as the hearing do. I think the same goes for blind people, even though verbal communication is easier for us, but non-verbal is more difficult.

This woman also discusses the attitude her parents had to her and her deafness. She says her folks were very ambitious and they passed it on to her, but that her mother was also protective, not wanting her to try things she might not be capable of and even trying to get a hard of hearing nurse to convince her that a social vocation wouldn’t be good for her - which didn’t work, cause the nurse was very enthusiastic. This stuff has some similarities to what I feel about my parents, even though mine never doubted I could get any vocation I wanted (except for pilot and the like, of course). I still see that inadequacy: my folks are ambitious and hopeful with regard to my situation, but they don’t really know how I’m going to get there, I think. I’ve gotten a little more cautious when making assertions about what my parents think of me, because I don’t know how much of it is actually projection. However I do think I can say with certainty that my parents had much ambition for me, and they most certainly did pass that on to me - and I probably distorted it into something not quite healthy, but I’m still not sure of what all this expectations stuff is about. My parents let me do anything I wanted to and were not afraid to fight to have me participate in something. That’s something extremely positive that I value sincerely, cause it’s gotten me much experience. I greatly appreciate that.

In the book Emma and I by Sheila Hocken, there’s a chapter in which Sheila gives talks about her guide dog. She goes to a school for the handicapped and is nervous cause she thinks that the wheelchair-using children are so much more crippled than she is, but it turns out that the handicapped children think she is poor for not being able to see. This makes me feel sort of weird, cause I see many blind people not considering blindness quite a disability, while other disabilities are considered very crippling. I have always felt that each disability has its drawbacks and its relatively positive sides. Physically impaired people have more “direct” implications of their disability. If you can’t make the movements necessary to dress, you simply can’t dress yourself, for example. Blindness has more secondary implications. I once speculated that if blindness truly just meant that one doesn’t have sight, I would be able to drive, cause I’m perfectly capable of turning the wheel and pushing the gas pedal. But of course I can’t drive, since I can’t see road signs and other cars, etc.

Mobility is a thing in itself, and it is about what this book is about: how Sheila regained her mobility when she got a guide dog. Physically disabled people are called “mobility impaired”, cause mobility means the ability to move. It is the capacity to go about in one’s environment, either using one’s legs or a wheelchair. In a broader sense, as it’s meant in such fields as geography, it means a person’s travelling from one place to another, including driving cars or using public transportation. Are the blind impaired in their mobility? Not literally - they have the same freedom to move as the sighted -, but if you see mobility in its broader sense, as in going about in one’s environment or travelling from place to place, I’ve often felt blindness to cause limitations in one’s mobility. Then, I could refer to the incapability of blind people to drive cars, but that’s not something that’s touched me much so far. I often hear blind people my age are being affected by grief for their inability to drive, but I assume that in the U.S. driving is more necessary than it’s here. Dad says that a car in America is considered a necessity. Here, few people my age drive, even if they have their driver’s licenses. College students can use public transportation for free, and our transit network is quite good. I think that when I’m older, I may feel limited because of my inability to drive, since I see what my Dad is capable of with his car, for instance. On the other hand, my mother doesn’t have a license either, so maybe I won’t miss it that much.

Mobility, for me, is limited at a far more basic level, and that’s making me feel very restricted. I know that blind people with good travel skills can go wherever they want, at least, that’s what they say, but my travel skills are not all that good. I also think it’s not entirely a travel skills issue - a trip to the supermarket takes me much shorter if I just ask a shopping assistant for help, even though it’ll still take me hours -, but again, that’s where my uncertainties about dependence come in.

This feeling of being limited has been very troubling for me over the last couple of years. As a teenager, I want to go places and always needing people to take me - like my parents driving me places cause I can’t get there by bicycle -, is not the nicest situation. Neither is having to ask my sister to go with me when I want to go to the supermarket, cause my travel skills are not quite optimal. I know this is not really blindness being the problem, but rather my poor travel skills, but it still feels that way.

Elsewhere in the chapter, Hocken describes giving a talk at a rehab centre for the blind. She writes:

Because of the gradual way I had lost what little sight I ever had, I always considered myself fortunate compared with people who had enjoyed perfect vision and then lost it. Naturally I had the frustrations of being blind, but I had never at any point sat down and thought: “Last year I could see and now I can’t; I shall never get used to this. What am I going to do?” I always found it difficult if I met someone who had newly lost his or her sight. It is the worst way to go blind. People are such visual animals that sight overrides every other sense. To have that sense suddenly taken away is a terrible blow. It brings with it not only physical blindness, but a kind of equivalent mental blindness as well. Sea-anemones immediately close up when anything touches them. People who go blind seem to close up mentally in the same way. But they often remain cut off from the world. So, if I had been dubious to begin with about going to talk to handicapped children, I was doubly worried about the idea of talking to the blind at Clifton Spinney. The point was that one of the main aspects of the talks I gave was to prove to sighted people how normal blind people were, how they were able to cope and get on with their daily lives, and to put over how I had done it, and how Emma helped me. HOw could I say this to those people?

As a person who is in a similar situation to Sheila’s with respect to the course of our blindness, I have at times had the same feelings. When this woman called us last month about the former student at our high school who’d suddenly gone blind, I had no idea of the right attitude about this situation. This was, however, for two reasons: the first being what Sheila describes - the fact that people who go blind suddenly lose so much at once it’s hard to imagine for those of us who’ve always been severely visually impaired, and hence the inadequacy in how to help them. The second, however, was my own trouble, and the feeling that people were expecting me to be a perfect role model for this guy ans his family, to show them what all was possible, while I was feeling terribly restricted by my lack of skills, which are an indirect consequence of my blindness, and was feeling totally incapable of giving a “the blind are just normal people” outlook, cause I only believe this cause I’ve been told so many times, but am still utterly surprised when I see in fact blind folks who *are* just normal people. It still hurts me that Mum, in the midst of her long litanny about all this guy would have to learn and if only he could this and if only he could that, said: “Didn’t you want to do such a course as well?” referring to the rehab programme. I know that it’s much worse to lose your sight at once than to experience gradual vision loss, especially if you’ve always been visually impaired - so that braille, for instance, doesn’t have to be learnt -, but I don’t want to use that fact as a badge of superiority, and just because you don’t start at square one with everything, as the newly blinded do, doesn’t mean you’re totally fine and know all the skills you’ll need to.

I did some more research on blindness agencies in the Netherlands, and I seem to get the impression that all offer roughly the same services and all are pretty diverse, in that all have living facilities and sheltered workshops, mostly for folks with multiple disabilities, that all have special schools and that all also offer assistance to folks in their own communities and schools. It’s just that Bartiméus more emphasizes its care part, whereas the other agencies more emphasize their training. It’s just the impression I get, and probably my own experiences colour this prejudice, cause in order to at least get my abilities, besides my limitations, recognized, we always had to ignore the regional divides and leave Bartiméus for another agency: Visio Leiden for the eval in 1998 and Sensis was more cooperative in our efforts to have me transfer to normal school. Maybe that was also our bias. I mean, some kid participating in that Newton Project said that at her previous school, a part of Visio, the academics were so poor and that she felt challenged at Bartiméus. Maybe my ideas are olf-fashioned, but then I still wonder: why the hell are there three agencies serving the blind, not just one? And two of the three cooperate closely or are planning on doing so. It’s kind of strange: we have rigid government policies that require people living in a certain area to get services from a certain agency, all agencies have about the same sort of services they provide, and yet they can’t seem to get along. Then it’s a lot easier in the UKRNIB. Efficiency doesn’t seem to be on the agenda in the Dutch blind field.

Sometimes, I think that the blindness field in the Netherlands is a quite unified, reasonably progressive field where at least blind people are being listened to, even though some organisations could do a better job of cooperating with the blind. My country is pretty small and some organisations operate nationwide and have some type of monopoly position (eg. there’s only one residential centre for rehab training), and also the country has been divided by some stupid government policy into regions which are being served by specific blindness agencies: Bartiméus serves the central and eastern regions, Visio the northern and western part of the country (except that Visio merged with the rehab centre, which is in Apeldoorn in the eastern central region) and Sensis serves the southern and southwestern region. Sometimes, I wish all organisations would incorporate - they each have a sort of monopoly position anyway -, but so far Sensis and Visio are cooperating closely and Bartiméus will merge with Sonneheerdt, a vocational college for the blind in the middle of the country. All organisations have to cooperate some anyway, in that the rehab centre for example also works with people from the south and the east, who will in their communities be served by Sensis and Bartiméus. However, further, the regional divides are hard to break, and that’s sad. We have very bad experiences with Bartiméus and I’m not eager to ask them for services. I considered it, of course, before the outcome of the evals at the centre was known to me, since if the centre couldn’t help me, I would need services in acquiring the skills I’m lacking with regard to independence and mobility, and the organisation I would have to contact would’ve been Bartiméus’ regional centre in Deventer. I knew that. I didn’t know about the specific courses they offered - the social worker at the centre asked me about it and I had actually not given it a close look -, but I knew they would be the central point for blind folks in my region. It would’ve been a good way of getting rid of my bias against Bartiméus - a bias much worse than that against Sensis or Visio or the blindness field in general, cause of my experiences at and with the school in fourth till sixth grade.

Today I took a look at Bartiméus’ website, just cause I want to know what services blind people can make use of and what their philosophy is like these days. I’d been looking around the Sensis homepage yesterday, and, even though I’m still skeptical about their special education programmes for children, I realized that their approach to blindness and vision impairment at least seems as it should be: not the “one size fits all” philosophy held by some folk (if someone has no additional disabilities, he/she is as capable as the sighted, period), but their focus, at least on their website, was on the independence of blind people and the help Sensis had offered its clients in achieving this independence. Bartiméus’ focus seemed mainly on the care the organisation provided for its clients. I agree that this is really needed for those with additional intellectual disabilities or other severe impairments, cause otherwise they may be locked away in institutions, whereas with help they may be able to live relatively independently. However, I was astonished when I found out about a 42-year-old woman who was only blind, living in a sheltered home and being oh so proud that she knew how to make beds, which she did in a retirement home for a living. Maybe I don’t know the full story - maybe she did have additional disabilities which weren’t mentioned, or maybe some other situation contributed -, but I know from Sevinc that Bartiméus is not fond of high expectations.
Now I see myself being inconsistent, pointing out something about high expectations while I’ve myself struggled with this issue for so long and continue to feel troubled about it, but what I mean is that Bartiméus had better teach this woman to do her own housekeeping or send her to the rehab centre for training, then to care for her and, worse yet, promote this on their website. I have no problem with blind people having no job or working in sheltered shops, living in assisted living facilities or the like, but I feel uncomfortable about Bartiméus focusing so much on care. We can hardly go anywhere if we don’t agree with their expectations of us, cause of the regional divides - Sevinc went to the rehab centre when she didn’t agree with Bartimeús’ judgment that she should go into sheltered employment -, and maybe the other organisations are just the same (I don’t know, Bartiméus is the organisation I have the most extensive experience with) or maybe they aren’t, but we can’t choose. I feel I was troubled by this situation as well, back in 1997, when Bartiméus disagreed with my having any extraordinary academic abilities, and we ignored the regionla divides and went to Visio in Leiden (other side of the country) for a second opinion with the remedial educationalist who’d tested me twice before. When we received a recommendation for special education, we once again ignored the regional divides and I was enrolled at Sensis in Grave, which is, by the way, equally far from my city of Apeldoorn as the Bartiméus school in Zeist.

I don’t think that Bartiméus would’ve been that bad with home-based rehab services (don’t know, hardly any experience with and not planning on it either), cause it would be much easier to determine your service need (people who receive in-home training usually have a simple service need), but their attitude displayed on the website still annoys me, for it sends such a negative message.

In some ways, I begin to realize that the “positive” philosophy about blindness as being merely a characteristic, is not all that different from other cultural models of disability. It’s only more extreme, in that it presumes that blind people need no extra adaptations (except for braille, canes and all sorts of technology) or considerations to achieve the goals the sighted reach. Even this is not true: NFB folk have repeatedly argued for the value of hiring readers in college, something I feel really weird about. Mobility impaired people hire their attendants, too. We just don’t need helpers to dress and feed us, but we do need readers and shopping assistants in large malls (I never ask for customer services in the shop, but is it promoting dependence to do?). NFB folk say we have to choose independence, but is anyone, in fact, independent? I mean literally anyone, disabled or not. Isn’t it correct that we all need help at times? Then, still, why is the NFB so rigid in its definitions of when you need help and when you don’t, as a blind person? Are sighted people telling each other that they shouldn’t need help with this or that because their height, knowledge of a certain topic or skill in a certain area is only a characteristic?

I have a problem with the phrase, stated three times in the report from rehab, that I have trouble with dependence. Of course I have a problem with dependence. Dependence has a negative connotation, and it will not cease to have that negative feel to it just because I’m blind. For me, blindness is much more than a characteristic - I’m about as troubled with it as can be, and I obviously have a bad attitude and stereotypical ideas about the blind (I truly do, this is not sarcastic, and it’s damn serious) -, but I’m not willing to come across to people as if I’m troubled with blindness. I’m not willing to show my poor adjustment to the entire world (well, I’m openly showing it to the entire Internet world, theoretically, of course), for I’m nineteen and have been severely visually impaired my entire life. Some parts of the “poorly adjusted” mindset don’t fit me, either: the “the world owes me a living cause I’m disabled” philosophy is not mine at all, and I would never openly claim to have any more rights or require any more caring cause I’m blind. I’m not thinking hostilely or resentfully about the sighted one bit and I’m not rationally thinking I deserve pity. That’s not the same as to say I’m not grieving blindness (I am quite a bit), but it means that I’m not thinking the sighted owe me anything solely because I’m blind. I know that I’m not allowed to grieve emotionally and shouldn’t be dependent physically. I am both, but I don’t want to make it apparent. Is that a problem?

I think it is, in a way, in that it makes me passive and perpetuates my restricted situation. I first had to admit that I had a lack of skills before I could decide I wanted to learn these skills. I could’ve hidden my difficulties in independence and mobility skills cause I found that admitting them made me dependent, but I’m very happy I eventually chose to acknowledge them, so that I will be able to improve my skills. Admitting I need to change doesn’t involve denying my problems, I think, but it is hard to understand.

On the other hand, that “trouble with dependence” stuff is an incorrect wording or nonsense at all. I hope it is the former, because dependence is wrong and blindness doesn’t alter that, but independence is something different than not asking for help. Still, NFB folk often seem to have very rigid ideas of what help or adaptations “the blind” (suddenly, it’s a homogenous group, never mind that blindness used to be only a characteristic) do and don’t need. I’m still finding it hard to comprehend.

I just found out about a project Bartiméus has been hosting for several years that allows blind and visually impaired children to do their HAVO, a medium level high school, at special education. Children used to be able only to do a low level high school at the schools for the blind and if they wanted to do any higher level, they would have to transfer to a normal school. Children in this project, the Newton Project, can do seventh till ninth grade at Bartiméus and then transfer to regular education or they can complete their HAVO (graduation after eleventh grade) at Bartiméus. The school is not certified to do examinations at this level, but children can do their exams for a national examination commission.

The level of education used to be my parents’ official reason to insist I transfer to normal school in 1999. I have always known it was not the whole story, since at one school in Amsterdam I could’ve done my VMBO (the low level education) in three years instead of four and then moved up through the higher levels. Cause of deficiency plans and the like, this way I would also have been able to complete the high level high school I’m on by this year. My parents entertained this possiblity for a while in 1998, but the fact that at this school, it was not common for children to transfer to normal school before graduation, my probably having to be a boarding student, and the school’s lack of modern computer technology were reasons for them not to move me to that school. Another possiblity, which Sensis (my seventh grade special school) mentioned was my going to a school mostly teaching students with physical disabilities in Nijmegen, where I would be able to complete my high level high school education. Last year I met a student of that school’s, a boy who was visually impaired, hard of hearing and had a physical impairment and some social/communicative issues (don’t know if they were labelled but they were “official”, unlike mine). I know that the school only mentioned this possibility cause they didn’t want me to go to normal school and my parents only turned it down cause they wanted me to go to normal school. I don’t think anyone even considered it.

I know that it was not only the level of academics that made my parents insist I go to normal school, although they’ve made it seem that way all of the time. That was a very important reason for me. I know that my parents wanted me to normal school, no matter what. I understand that. One girl who attends the Newton Project said she wanted to go to normal school after ninth grade cause one couldn’t always remain in a protective environment. I have been thinking that this is an important factor in all that I’ve been experieincing over the past couple of years: I want to live successfully, but I also have to learn the compensatory skills to achieve this. One is always seen as more successful if one is at normal school, lives at home (instead of in a living facility) when one is young and on one’s own or with a family as an adult, and is involved with all “mainstream” activities, but one also needs to learn the specific skills of blindness, and how do you learn these if your only relatives and acquaintances are sighted? I’m sort of troubled with this issue now that I’m going to rehab to learn compensatory skills (that’s the word they use): I’m still feeling that I’m less successful cause I won’t just move on to college, and yet the reason that I’m going to rehab is to learn to be more prepared for my actual move to college next year. It still seems like a contradictio in terminis and I have trouble seeing that it isn’t.

I found yet another article promoting high expectations of blind children and this time it made me wonder what it is that I’m terribly mistaken about in my situation. The main reasons why I’m wondering about this are that this article has not been written by an NFB folk, or if it is, has not been published in an NFB-sponsored publication, and secondly my slow realization over the last month (since I returned from rehab) that I’m often projecting my own ideas with regard to expectatiosn upon others, mainly my parents. Does that mean that my parents didn’t have high expectations for me? But then what does that feeling about expectations come from? The thing that I’ve come to think is that it’s *my* expectations that I’m attributing to others. But in this “expectation equals outcome” mindset, does it matter whether it’s someone else holding the expectation or it’s the person herself, especially if she thinks it’s someone else? I mean, I’ve always been convinced that I could achieve as much as another person my age, and so have my parents - at least, that’s what I think -, yet here is another article stating that if parents “get high” about their children, these children will become independent and confident.

The stuff about high hopes especially bothers me. It’s the most noticeable component in my parents’ attitude about me. My parents never let an occasion go by to express their hopes (I translate expectations) for my achievement in academics, independence, and just about everything. When I was nine, I knew beyond doubt that I would have to move out on my own at age eighteen. Yes, would *have to*, and the next memory I get is that fear which I felt and the relief as I calculated that I still had another nine years. When I was eight or nine, at the St. Nicholas celebration at my Mum’s job, St. Nicholas asked who did not want to grow up, and I was the only one. Is this normal childhood insecurity, or what? And if it’s something else - that has been extremely pervasive over all these years -, what’s its relation to “raising the bar” for me?

In virtually any article about high expectations, over-protection etc., it is assumed that parents don’t genuinely believe in their blind children and that this is at the root of their lowered hopes/expectations (either consciously or subconsciously communicated), which will lead to their children’s low performance. Both the first and the second assumption I have always disagreed with when it came to my parents, but I sometimes think that the second is truer than I want to admit. Not when I was young, but at least for the last couple of years, my parents have had lowered short-term expectations of me. I remember last year my parents discussing going on holiday together, and saying they couldn’t go when I was home and Sigrid was not cause I couldn’t care for myself and the cat (Mum mentioned the cat as I tried to reassure her that I could care for myself, but caring for the cat is pretty easy). At eighteen! That magical age when I would have to move out on my own, according to the 1995 plan! No, my parents didn’t expect me to be a normal person my age, over these last years. But they did before, and furthermore their lack of short-term expectations (probably also partly cause they found it was my responsibility, since Sigrid doesn’t have chores either), did nothing to their high hopes.

What I’m also having trouble with in admitting that my parents haven’t expected me to be age-appropriate over the last few years, is that “she can’t” philosophy that seems to be behind it, which is most certainly not as my parents think. Rather, they tell me they can’t teach me daily living skills. It’s nothing to do with their not thinking I’m capable or their feeling I need a caretaker, that they don’t expect me to do daily living skills, but rather that they can’t show me how to do them, at least that’s what they say. I still don’t know if that’s something of my parents’ - eg. that they don’t want to invest the time and energy into showing me how to do something, or that they don’t know about the alternative techniques blind people use - or some problem of mine, like there being something that prevents me from being able to pick up things the way another child would pick them up. But one thing I know is that my parents never, ever thought I was incapable. They have always had high hopes - to the point of totally troubling me the way they expressed them -, have had high expectations at least up till a couple of years ago, and as for high exposure: they’ve not feared putting me in “dangerous” situations anytime. I mean, I was allowed to go to Russia for four weeks without my parents when I was fourteen; I wonder if even the majrity of parents of sighted children would allow their children this experience (I was, notably, the youngest of the Dutch group, and the only blind person). My parents never forbade me to do things on my own that sighted children my age do, like going into town on my own. I never did it cause I didn’t know the way in the town centre and so I couldn’t find any shops, but if I had wanted to, my parents would surely have allowed me to. Is this something about expectations? I mean, should they’ve expected me to go into town on my own? But Sigrid usually went with friends also, and only very recently went completely alone. I had no friends to go with. So what? I don’t know.

I know that parents are sometimes afraid that their blind children will get hurt when they go places on their own. I know that parents worry about their sighted children, too, but that this is to a lesser extent. When we were living in Rotterdam, both Sigrid and I had restrictions with regard to where we were allowed to go: Sigrid was not allowed to walk to school alone cause she had to cross two main roads, and at least till nearly the end of our stay in Rotterdam we weren’t allowed to cross the street alongside our frondyard, which is a busy one, and I don’t remember anyone of our neighbourhood children crossing that road. Both of us could cross the street on the other side of our house to go to the playground. I know that at some point I didn’t dare to cross that street anymore. I can’t remember if my parents just left it that way or wanted me to cross the street. Mum’s always said that I’m too fearful and that I just need a good kick in the butt to get outside of my comfort zone. Why would she not have kicked me out of my comfort zone, if she always preached it? She most certainly did. But still, I’m feeling terribly restricted and I’m behind in all sorts of daily living skills. I so hope this is something of my thinking too little of my abilities or my capacity to learn. I feel my parents always pressured me to go out of my comfort zone, yet at some point they decided it was my responsibility. I know this. I mean, if a nineteen-year-old does not resemble a ten-year-old in some areas of independence, will expecting her to be a normal nineteen-year-old get her all the skills she’s lacking? My parents can now legally kick me out of the house - well, I think they are obligated to provide food and shelter till I’m 21, but that’s it -, and they’ve at times threatened to do so. Probably the “high expectations” gurus would applaud that, for it’s making clear that I can’t be dependent anymore. But I’m happy my parents dropped their rule that I could only live with them as long as I was in school/college, so I’m having this year to learn some new skills to be more independent.