There’s been discussion on various E-mail lists about some UK doctors who consider preemies born before 25 weeks gestation to be “bed-blockers” because they’re much more expensive economically than older preemies, whose care might be compromised. In all of these discussions, I’ve been highlighting the errors in the “babies born before 25 weeks gestation are economic disasters” reasoning: that gestational age cannot be calculated 100% accurately, that it’s many factors (gestational age, birthweight, gender, etc.) that determine outcome and that hence, it’s just an arbitrary line, and that it’s mostly certain conditions, like brain damage, that influence outcome. In all of my messages, I’ve been trying to be informative as opposed to argumentative, firstly cause people just won’t agree on these matters and secondly – which is something I’m struggling with – cause I’m unable to explain the personal feelings this controversy generates.
It was 2001 when I first found out about the 25-week limit in the Netherlands. A few months later, in March of 2002, I found out about the “calculation mistake” made in my own situation and was deeply confused, cause in 1986, the (much less strictly enforced) limit was at 26 weeks. I felt I didn’t have the right to live, since I was born too early. At the same time, I was greatly troubled with my blindness, yet at the same time I made sure to tell everyone that my not being all that happy had nothing to do with my disability, for fear of being said to have a “poor quality of life”, so that I’d negatively impact the ethicists’ and neonatologists’ views about preemies. In a way, I was troubled with my situation not only cause I had difficulty coping with it, but also cause I felt an obligation to prove that I was all fine, to prove that I “rub along”.
That “rubbing along” stuff got a new dimension in late 2004, when I firstly read the article in the October 2, 2004 paper and, secondly, was troubled by questions about my own future. The situation that my parents feared that I might not “rub alogn”, and the deep meaning that’d gotten over the years, was not new, but the implications it got were much more concrete – and have been ever since.
A few months ago, there was a discussion on PREEMIE-CHILD about high school graduation: researchers wanted to use it as a means of showing parents that, even though kids may be in special ed, they’ll still graduate from high school. I oppose this type of research, for it is solely academic, while most kids don’t get into special ed for solely academic reasons, and academic achievement is not the same as success. That is another “hot button” of mine, of course, connected to my feelings about my high intelligence and how it’s often been equated with success or the other way round -
that people assumed I was dumb, based on my failing development in non-academic areas. It’s something that’s been greatly troubling me lately, as on one side of the line there’s special ed who used to think I couldn’t be independent at all, and on the other side, there are my parents who would’ve wanted me to go to Nijmegen by last September yet, eventually, agreed to my taking this gap year. I feel that I’m something in between, but I don’t know where exactly I fit and I don’t know where I’ll be in another five months. In any case, my academic intelligence has nothing to do with this.
There’s also my behaviour that was the subject of heated debates between special ed and my parents in the period of 1995/1996 till 1999. Well, actually it wasn’t so much the subject of debate – I wish it were, but it was interpreted as dumbness by Bartiméus and as sort of non-existent by my parents. My behaviour trouble was something about which opinions could vary radically. The theme of the years 1997 and 1998, I contend, was whether I were intellectually deficient, behaviourally disturbed, neither or both, with my parents being convinced I was intelligent and Bartiméus being convinced I was not, and opinions on my behaviour altering somewhat. They still do: at one point, I find my parents calling me “autistic”, “psychotic” or some other randomly selected psychiatric label, yet a short while earlier or later they’ll consider me to be just acting out somewhat. I’ve always hated the latter, because it was minimizing a characteristic of mine that – no matter how much it may be in need of change (which I do think) -, is still apparent and hasn’t, in all the eight years that I’ve known about it, been something I could turn away by pushing a magic button. When I was younger, I was convinced it’d be over when I was older, but now that many of my other deficiencies (like my daily living skills problems) have proven not as absolute as I used to think they were but my behaviour has not, I’ve come to doubt that belief. You may, of course, say that I got occupational therapy to learn daily living skills, but if the same rule applied to behaviour, telling me how to act correctly would rid me of my behaviour problems, which it didn’t, since so many people over the last years have taught me, in this way, to behave normally, yet I still don’t.
Over the years, it’s not been blindness, but my behavioural problems, that have caused me the most worry as far as my “rub along” factor is concerned. If it were “just blindness”, I’d “rub along” without any problem. In fact, if it were “just blindness”, there were no reason why I’d ever not done perfectly well, ie. when I went to special ed. My parents still want me to believe I went there to learn Braille, but that’s nonsense: firstly, I didn’t learn Braille till 1993 while I went to special ed in 1992, secondly, I started special ed in May, not September, and thirdly, the first special school my parents checked out was not a school for the visually impaired, but one for the physically disabled. Likewise, in 1998, the reasons for advising special ed, included my poor braille skills, but also included many other issues, and it was not cause of my poor braille skills, but cause of “the complexity of points of special attention”, that a negative recommendation for regular ed was given. And much in the same ways, I refuse to consider any simple paradigm about what “the blind” can do to be enough to base beliefs about my own assessment of my situation on, which is to be interpreted in two ways: I refuse to comform to the negative stereotypes about blindness held by some people for so far as I don’t meet them, yet on the other hand I refuse to adopt the “you can do anything you want cause the blind are no less than the sighted” attitude on issues where I’m
clearly not near-perfect. I don’t care what “the blind” can or cannot do – I care what I can and cannot do, and that includes learning about alternative techniques used by other blind people, but if that were enough, reading some alternative technique books would be all I needed to do in order to be as independent as anyone else, cause then I’d know what alternative techniques other blind people used.
How does all of this relate to preemies and the “rub alogn” issue? It relates on several levels. Firstly there’s the level of my not being just blind, but also being a former preemie. That, in and of itself, does not say much, but it does give me a reason to not be “just blind”. When I learnt about hydrocephalus last August, I developed a mini-obsession with its possible secondary effects similar to my former obsession with Asperger’s Syndrome, the only differences being that the information is much more scarce and that I forbade my obsession much quicker, namely in January, after having decided that caring about the secondary effects of hydro equalled comparing myself with another training home client with hydro and (subsequent?) brain damage, which I shouldn’t. Still, my obsession ended in the same way that my obsession with Asperger’s did: in my acknowledging that hydro or the IVH may not have resulted in my behaviour stuff, but that that didn’t mean that my behaviour stuff wasn’t there. As I wrote to a PREEMIE-CHILD member in January: if someone were to invent a disorder that was an exact description of my behaviour and stick it on me, that wouldn’t change the factual appearance of my behaviour.
On another level, preemie ethics relate to my wondering about my situation, in that what my situation is like influences my medical or societal value. I don’t like to say that, of course, as I personally don’t consider anyone to be of decreased value depending on their schooling, living situation, employment status or the like, but if one holds utilitarian views, it’s true. I am, in this sense, very sad that my father holds utilitarian views. He once said my blindness didn’t matter cause what he’d invest in me would have noticeable results. I till this day wonder what he means.
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