Thoughts on Social Involvement

Last Thursday, I was having a discussion with Arda, mainly on studying and leisure (holiday arrangements and such). All my thought-out holiday possibilities appear not to be able to go on, so it frustrates me quite a bit. In one sense, I want to do something more than do my housekeeping and hang around online 24/7 dreaming of mostly unrealistic scenarios of what I am like or might become someday. In another sense, I agreed with Arda three weeks ago that I would make these arrangements, so now I hadn’t done what I’d said I would. Arda didn’t seem to agree, but I’m not sure.

She got to speak of finding a volunteer to do activities with. I don’t feel like it, on philosophical grounds of course. It’s not because of blindness that I would need to ask a volunteer to do activities with me. After all, blindness doesn’t keep me from having friends who would be willing to do things with me without philanthropical connotations. If it were blindness, or it could even theoretically be about blindness – with or without screwedly negative attitudes, cause I’ve stopped caring about whether I meet the NFB criteria for success -, I wouldn’t care, but it isn’t. And I still refuse to admit I have such extreme social problems that I need a charitable person to get me out of my isolated situation.

Am I going to get out of this situation on my own? Actually, I don’t think so. Well, of course I’m not going to get out of my isolated situaiton on my own, cause on my own would by definition mean I stayed as alone as I’m now. And, finding it hard to distinguish between the situation where someone volunteers, on a charitable basis, to do something with me and the situation where someone likes to do something with me, I find it hard to accept this idea. I know that I’m not going to get any social contact by sitting and waiting, even when I do go to social events – at one point I thought the only reason I was isolated was cause I hardly ever left the house, but I know that leaving the house is not enough -, but I feel I ought to be too good to need someone to volunteer to do activities with me and I feel that asking someone I’m acquainted to for an activity is abusing
their sense fo responsibility for me. Damned, how do other people get out of this situation? How do you know if someone genuinely wants to do something with you or just does it out of a charitable philosophy? Does it even matter, when it gets you involved in society? I don’t want to stay in my current situation, but I feel I ought have been good enough to have gotten out of it. I think this is a pretty universal belief system of mine.

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Lots of Thoughts on Blindness and My Situation afterr Listening to an Interview with a Blind High School Graduate

I was just reading an audio magazine for visually impaired young people and found an interview in it with a visually impaired guy who just graduated from the same type of high school I went to and is planning on studying biotechnology at Wageningen University. I knew the guy from that college preparation course I took last year and by then was already surprised by the fact that he wanted to major in a technical subject. Technology is not an interest of mine – the only science subject I regret not having taken in grades ten, eleven and twelve is biology -, but it’s the attitude that surprises me. Of course, I knew there are blind scientists, but I have always been eager to believe that they are firstly an elite group and secondly all studied in the United States. For a long time, I’ve tried to blame my poor position in society on the Dutch way of relating to disability, and I’ve even tried to prove this theory sociologically. I know it’s incorrect: the United States may have had more experience with accommodating for the blind for several historical and sociological reasons, but that does not mean that the general attitude towards blindness nowadays is any better there than it is here, as equal numbers of unemploymenbt (75%) etc. signify. I know the thing is an extremely personal problem.

I find it really hard not to think in black and white here. In my mind, there seem to be two categories of blind people: those “independents” who are usually educated and intelligent, blind from birth or an early age with stable eye conditions, whose parents had high expectations, who never went to special education or rehab, and who had lots of blind and sighted role models to teach them that everything is possible on the one hand – those kids who truly feel nothing is impossible and who will pursue their high-achieving dreams -, and those “dependents”, who often went to special schools and had families who thought blindness was a tragedy, who earned low level high school diplomas, if anything, who are usually partially sighted or have progressive eye conditions and never learn to use the alternative techniques of blindness properly, and who didn’t get any feedback from high-achieving, blind role models and were given the impression that they couldn’t be like their sighted role models because they were visually impaired, on the other – the ones who end up unemployed and with lots of guidance fuom the blindness/disability service field. I tend to illustrate this by two examples of people I met at rehab, though they are not fully stereotypical: one is the former student at my high school, Menno, who went blind when he was in college, and the other is a girl I met at the rehab centre, Desiree. Menno was, obviously, a successful student till he went blind in his junior year in college in May, 2005. Then he entered rehab in July, 2005 and completed the basic rehab programme by November, planning on going back to school by January. I wonder how he copes, but he either is as much a pretender as I am or he truly does alright. Desiree, on the other hand, went to a low level high school and to a vocational college after thaqt, completing the level 2 vocational education (levels are 1-4). She has a progressive eye disease and lost significant vision just after having started a new education after that level 2 diploma. She quit her studies and went to rehab, completing the basic and vocational rehab programmes yet so far not going back to school. The most recent news is that she plans on going to an activity centre. As you might guess, I looked up to Menno and down on Desiree, but I also had other feelings relating to them: Menno, as much as I admired him, made me feel that I had no right to feel the way I did (of course, he never intended on giving me that feeling and it’s just my interpretation) cause I’d been blind for all of my life and he was able to cope so nicely while he’d lost almost all his vision at once, and Desiree in some way comforted me by supporting me in my situation. I sometimes wish I’d taken some of her remarks in December and not let my situation slip away from me until I freaked out in March. Her opinions and remarks would probably be considered sympathizing with limitations by some well-adjusted blind people, but there’s a strange thing about that high expectations and sympathizing with limitations thing, that signalling and acting upon a troubling situation early and appropriately (if possible) will minimize further damage, whereas waiting till you get a meltdown will not only mean more time gone by but is also likely to cause a worse situation than it initially had been. I was worse in late March than I’d been in October or even December, for example. I find it difficult to react to a difficult situation appropriately and at the right time, in part because I fear it’t's going to prevent me from making progress. Well, what *is* going to prevent me from making progress, is pretending to make progress till I break down and lose all the “progress” I’d thought I’d made – plus probably treating other people inappropriately, with my behaviours.

But, to get back to the extreme categories of blind people, I notice that I have qualities belonging in both. I am intelligetn and educated and had parents who pushed me out of my comfort zone, but, even though my eye conditon is congenital, it was still progressive, I’ve been in special education for seven years and now in rehab/training for almost a year (gee, has it really been that long?) and never had many blind role models – in fact, didn’t have any till like two years ago. And I also realize there are other, personal factors. I mean, not everyone with adventitious or progressive vision loss, has adjustment problems like I did – though I know that many fellow people with my eye condition did -, and not going to special education doesn’t necessarily mean you’ll get a high-level education, for instance. And then there are these other problems that I keep wondering about. I of course mean that speculative additional disability of mine, cause I’ve known for long enough that blindness alone does not prevent a person from being successful, even in the Netherlands. So it should be something else, not necessarily a real, identifiable disability, but something, and I don’t know what.

I don’t think it’s simply about low expectations and having been involved in the disability service world for too long, like my father would be eager to believe after my discussion about my plans for college and training home last April. After all, I’d had nothing to do with the blindness field for six years when I graduated from high school and no-one at school or at home doubted I was going to make it at university, and still, I decided I was going to rehab and training home. My later decision to delay college once again was also not because of sympathy from others for my
limitations or low expectations, but because I wanted to be realistic and realized I woudln’t achieve what I wanted to (which I didn’t even know what it was) in less than half a year. Still, of course, my situation would’ve been different if the people here had not supported me in my decision to delay college and the situation will be different if I don’t get approval to stay here till next year – which may be unlikely, but still.

There is also this thing about expectations and achievements, that there is something between totally sympathizing wiht someone’s difficulties and not assuming him to make any progress on the one hand and putting some candy bar of expectations on some high star to be reached for without a space shuttle on the other, and that’s an attitude I’ve been seeing with training home people – and in bits and pieces that I remember of my discussion with Arda two weeks ago -, and it confuses me. How can a person at once expect progress from me – which I agree with – and support me in my situation? It is such an impossible combination that it seems equally impossible to realize that I can acknowledge my difficulties while at the same time continuing to make progress. It’s something I really need to change about my situation if I am to achieve realism and if I am to ever make true progress.

This whole thing, I realized this evening, has relevance to most of my attitudinal problems that have been happening in the past five years. I remember that summer of 2001, after having tried to show that I did hold on in regular education for two years, kind of breaking down and deciding to stop caring about the whole thing. Within half a year, I was completely slipping away in school and at home. I still had the voice inside my mind saying that I had to hold on, but the part of me that I call Carol now was extremely dominant and was only becoming more dominant as Jane’s voice persisted in my mind over the year. Well, I don’t think it was that simple cause even then there were more parts acting out inside my mind and it was mainly the inner conflict that caused the problems, but that’s the basic concept that has been returning many times since. And I think I can translate this into some nice, normal-sounding concept, where I cannot integrate my difficulties, or what I see as my difficulties, with the expectations set forth by others or my perception of them. Hmmm, haven’t I seen this before?

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Yet Another Autistic Murdered

I found out that another autistic was murdered by his father last Friday. It is by far not the first case – Joel Smith has a whole list of cases -, but it still shocks me and it shocks me all the more cause there will probably be people who would’ve sympathized with the father because he’s “burdened” by his son’s Autism. There will probably be those who write articles on the Internet detailling what horrible things autistics do that frustrate their parents to the point where they can legitimately kill. Sure. I know these behaviours. Even though I’m not autistic as far as I know, I exhibited them myself, and, while I understand how frustrating this has been for my parents, I think they would not agree that it was a reason for murder. Oh well, I guess the people in the “Autism community” who sympathize with murderers of autistics, would tell me that my behaviour was not severe enough, but that’s not the argument I’d use to build my point upon – it’s the thing that triggers me emotionally -, cause there is no reason at all to kill a person based on his disruptive behaviour, no matter how severe. I don’t care whether the child couldn’t speak or had only a 30 IQ or spent his whole life rocking and head-banging and screaming, this is no reason to kill, period. And of course we don’t know whether this particular father killed his son *because of* Autism, but it doesn’t matter: murder is murder no matter what. Unfortunately, I’m sure the sensationalist press probably thinks differently.

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Thoughts and Feelings about a Case of “Wrongful Life”

I just found out about another “wrongful life” case. “Wrongful life” is where a parent sues doctors because their child with disabilities should not have lived. We had one of these cases a few years back, where a girl named Kelly was born with multiple, severe disabilities while the parents would’ve had her aborted if testing had shown the defects. This time, it is a girl with Down Syndrome in Austria.

I’ve never liked the concept of “wrongful life”, especially when claimed by parents – in France there is this law that a child cannot claim wrongful life, but their parents can, go figure. It reminds me of my own experience and my father’s utilitarian views. I know, I would not have been aborted cause I had no increased risk of congenital abnormalities. My mother once underwent pre-natal testing because she was at risk of carrying a child with spina bifida (I think because she was on an anti-epileptic), but that was not with me. Still, I know about that comment made by Dr. Fetter (my former neonatologist) in 2004 about the kids about whom he thought after many years: “What have we done?” by keeping them alive. I know I do not fall within that category as far as severe disabilities are concerned, and, for this reason, I do not think that any court would have sentenced Dr. Fetter if my parents had filed a wrongful life suit, but the parents in some cases have used their “totally disrupted plans” as an argument. What are “totally disrupted plans”, anyway?

I find this concept really hard to deal with and of course it pretty much triggers me. There are, especially in countries with poor social security, those plans that can be totally disrupted because raising a child with disabilities is an extreme financial burden on the parents, but I’m not sure to what extent this applies to families in countries with good social security. Am I a financial burden on my parents? I could’ve been, in 1986, had my parents not had good, government-funded health insurance like I hear many people in the United States have – with Medicaid being quite bad and furthermore some people not being able to get on Medicaid at all. Was Kelly a financial burden on her parents? It appears so, since the info on a Dutch court website says the parents were awarded compensation for the extra material cost of raising and caring for Kelly, and it seems to be something more than food and shelter after Kelly turns 21, cause the supreme court recommended this cost be excluded. I’m not sure what extra material costs are meant.

The hospital was also sentenced to pay immaterial costs related to Kelly’s disabilities. This is a more difficult topic, cause which costs does it include? Kelly’s mother has legitimate psychiatric problems and if these are due to Kelly’s disabilities, it would legally be understandable if the hospital paid those costs, if insurance did not, which I’m not sure about. However, what do you do about those “totally disrupted plans”? The child in the recent case has Down Syndrome, and the most noticeable feature appears to be the child’s mental retardation. What are “disrupted plans” when you talk about this? Is it that thing my father says when declaring that he would not raise a mentally retarded child? I know people with intellectual impairments – they’re mild, but those of many kids with Down Syndrome are also mild -, and it would not at all surprise me if the parents envisioned something else when they got their child than that he or she would go to a special school, need training in learning to live independently and probably need some help while living on his or her own. Heck, my parents didn’t plan it for me, either.

Sure, these “wrongful life” children are probably more severely affected, but where do you draw the line? When I was a baby, I had quite a few medical conditions – ROP, an IVH resulting in hydro, and respiratory illness -, too, and my parents were ill-informed about my status, too, so is it by the grace that I’m not intellectually disabled that I’m not considered “wrongful life”? I in one way hope so, cause several of my friends have neurological and respiratory conditions that have had more severe effects than mine did and I don’t consider them “wrongful lives”, but on the other hand, I hate that everlasting emphasis on intellectual functioning. I’m not going to say that intellectual disability and other health concerns are not influencing each other and hence creating a more difficult situation than when the person had only one disability, but mental retardation is what is most oftenly highlighted.

Now having lived with people wiht mild intellectual impairments for half a year, I realize that it cannot be just about intellectual functioning. Or you would have to come up with that stupid “you can’t talk with them” argument my father uses – which is a valid argument, cause it was once mentioned by a staff member in reference to what troubled intellectually impaired folks. It seems to be the problem is much more in the extra services these children (or adults) require and the parents’ need to remain caregivers longer than had the child not been disabled. Now of course the latter is less applicable to me than it is to some other people (but I guess that’s mostly cause I don’t want my parents to represent themselves as my carers anymore), but I still required all the services like special education for seven years, rehab, now my current training home setting, and I’m not at all sure what the future will hold. That “disrupted plans” argument for me highlights only that the disabled child will not conform to the parents’ expectations/dreams for her. Well, neither do I, and in my father’s ethical monologues about “wrongful life”, he’s always had a need to include rationalizations of why my need for services and “missed” years were acceptable. It, still, always has the connotation that all of this is aimed at eventually conforming to their dreams and expectations. What if I weren’t to conform? I most likely will, of course, but I hate that everlasting fear of making a decision that my parents feel makes me appear too much like what they feel is “disabled”. I’m twenty now and I’m totally not sure of where I stand and how this relates to being more or less disabled. What is due to my disability, and what is due to choices, just qualities of mine, etc., anyway? If only I were clear on that.

Even so, my parents may hate me for making the wrong decisions, they may feel greatly disappointed with the way I ended up, but they would never (oficially, and I rationally think in any case) consider me a “wrongful life” – and if they did, would not be believed -, so there is no need for them to define in court what damage they suffered cause of my disability. However, Kelly’s parents and the parents in the recent case, have to. How do they do it, and how does the court rule? I’m afraid that far too much damage is attributed to the children’s disabilities.

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Confused and a Few Difficult Weeks at Training Home

I’ve been having a really difficult time at training home lately. It’s mostly cause over the past several weeks I’ve been feeling confused about my situation. Yes, again. I’m still dealing with the issues relating to the parent conflict – even though I’m not angry anymore, our relationship has changed – and the wanting to be truly realistic is still there. True realism is not about knowing all the details of my situation – the exact status of my visual impairment, my grade point average calculated to three decimal places, or precisely how long it’ll take me to clean up the bathroom -, but about knowing what all of these, and even things that aren’t really facts, imply. It also means making decisions, as Arda keeps highlighting. I hate the whole idea when it comes to big things like college or the like, cause doing one thing means intrinsically not doing something else. Decisions can be really black-or-white and in this sense, they should be easy as black-or-white thinking is one of my unfortunate qualities, but I’ve long realized that things aren’t black or white. Even decisions are not. Of course, you cannot major in everything in college, but you can still have interests that aren’t college majors. Yet it’s still so polarized and yet so blending all together in my mind. “Switchy” is what a friend of mine calls it. I hate the word cause it comes from the psychiatric community (specifically, of course, the DID scene), but I don’t know of any better term.

I had a pretty hard discussion with Arda last week, cause unfortunately I’ve been behaving rather badly at training home. I think that is being settled now by my taking steps to make the necessary arrangements – I have to get a holiday worked out (still, that late) and I have to pick some studies for this coming fall. Of course, I’m also trying to change my behavior and I hope it’s getting noticed. And I hope – and that’s a little more difficult – that I can keep up behaving okay past a few weeks, cause at this moment I really have the “I have to hold on” attitude, and this attitude has not often proven effective in the long run. However, thinking pessimistically is only going to worsen the whole thing.

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