Born Unwanted: Psychosocial Consequences for Children Whose Mothers Were Denied Abortion

Abortion is, of course, a vjery controversial but relatively common means of fertity planning. A lot of research has been done on various aspects of it, such as mental health and medical consequences of abortions as compared to completed pregnancies. However, little research has been done on the consequences of completing an unwanted pregnancy for the resulting child. In the American Journal of Orthopsychiatry, april 2011, there is a very interesting study on this topic.

The study compared mental health and developmental outcomes for children whose mothers were denied abortion to those born from accepted pregnancies. In Prague in the 1960s, abortion had to be approved by a local abortion commission, and, if denied, could be approved anyway by a regional commission. Unwantedness was defined for the purposes of this study as an abortion having been denied twice. This is a very strict definition of unwantedness, because, of course, not all unwantedly pregnant women go through the bureaucratic process of twice requesting abortion.

There were 220 unwanted pregnancy children found eligible for the study. Each was pair-matched to a child from an accepted pregnancy (mother’s name did not appear on the abortion record) similar in age, gender, birth order and school, while mothers were matched on age and socio-economic status. Children were followed up at age 9, 14-16, 21-23, 28-31 and 32-35. In addition, a substudy was done on married people at age 26-28.

Children born out of unwanted pregnancies had similar birth weights and lenghts, a similar chance of having congenital abnormalities, and a similar score on signs of minimal brain dysfunction (a condition most like current ADHD) to the accepted pregnancy children. At age 9, the two groups also scored similar on overall IQ. However, the unwanted pregnancy children, particularly boys or only children, were significantly less sociable and well-adjusted than the controls.

In adolescence and young adulthood, problems for the unwanted pregnancy group became more significant as compared to the controls. In adolescence, unwanted pregnancy children had dropped out of school more and had obtained lower scores in school (that is, much fewer scored above-average). Social problems also continued. In young adulthood, fewer unwanted pregnancy people were satisfied with their jobs, relationships and overall mental well-being than accepted pregnancy people. Mothers were also less satsified about their unwanted pregnancy children’s developmental and educational outcomes. More unwanted pregnancy children than accepted pregnancy children had been or were still in treatment for mental health conditions, and also more unwanted pregnancy children had been sent to prison.

By about age 30, there was still a difference in psychosocial adjustment between people born from unwanted pregnancies and accepted pregnancies. However, this gap had narrowed. By this follow up, women’s outcomes were less favorable as compared to controls than men’s. There was a significant difference between unwanted pregnancy women and control women in terms of unemployment, unmarried status, and parenting difficulties that requered authority attention, to the disfavor of the unwanted pregnancy women. Such a difference could not be found among men. Unwanted pregnancy women were also less socially integrated and emotionally stable than controls. These effects were due to unwantedness. This can be seen, because, by this stage in follow up, siblings were used as an additional comparison group, and they did not show these problems.

Lastly, by age 32-35, those unwanted pregnancy and accepted pregnancy people still living in Prague and their siblings were given an extensive face-to-face interview. Mental health outcomes were compared. People born from unwanted pregnancies had significantly more problems, as indicated by nine out of ten measures of mental health – ranging from inpatient treatment to sexual satisfaction – than their siblings. This difference was not found among the accepted pregnancy people. The unwanted pregnancy people were significantly more likely to have received inpatient and outpatient mental health treatment than the accepted pregnancy people. They were also significantly more likely to suffer from anxiety and depression. By this age, however, poor social adjustment was not merely attributable to unwantedness, since siblings of unwanted pregnancy people also had poorer social outcomes than the accepted pregnancy controls’ siblings.

The substudy on married unwanted and accepted pregnancy people found some interesting things. In many ways, the female partners of unwanted pregnancy men and the male partners of unwanted pregnancy women were comparable to unwanted pregnancy women and men, respectively. Female partners of unwanted pregnancy males had more abortions (both one-time and repeat) and were more dissatisfied with their jobs and mental well-being than the famele partners of male controls. Similarly, male partners of female unwanted pregnancy people encountered more relationship difficulties than the male partners of control females. Lastly, unwanted pregnancy women who had at least one child, felt less prepared for and less happy about the pregnancy and parenthood than control females.

This study, the author concludes, shows that unwanted pregnancy and denial of abortion lays the foundation for an environment in which children are poorly reared, which subsequently leads to mental health and psychosocial problems for the unwanted child. An alternative hypothesis, whereby mothers of unwanted pregnancy children are simply emotionally unavailable mothers, is rejected.

The last wave of the Prague study was conducted in 1996/1997. The results of earlier waves of this study, in part, led the Czech government to abolish abortion commissions in 1986. The author of course advocates legal abortion and other means of fertlity regulation. It is interesting that this is argued from the point of view of the unwanted child, who is at significant risk of mental health and psychosocial problems if born. Of course, it remains to be debated, from an anti-abortion standpoint, whether these problems are worse than not to be born.

Reference

David HP (2011), Born Unwanted: Mental Health Costs and Consequences. American Journal of Orthopsychiatry, 81(2): 184-192. DOI: 10.1111/j.1939-0025.2011.01087.x.

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Family Environment Predicts Outcome in Women Physically Abused as Children

I started reading research articles again. In the most recent issue of Child Abuse & Neglect appeared an interesting article on the variables influencing adult outcome for women who experienced childhood physical abuse (CPA). The authors interviewed 290 women living in a community in the northeastern U.S., who had lived for at least ten years of their childhood in a two-parent home. The two-parent home was chosen to increase homogeneity among the women. For the same reason, all women had to be at least second-generation U.S.-born. Blacks and those with an alcoholic parent were oversampled due to their underrepresentation in community settings. However, there was no significant effect of either of these factors on the presence of abuse.

Of the 290 women, 84 met conservative criteria for CPA. CPA was defined as resulting in at least some injury and not merely used as corporal punishment. I wonder how many CPA cases were missed when women perceived their abuse as punishment. However, since the prevalence of CPA was high compared to other studies rather than low, this is likely not considered interesting. What this did show, according to the authors, is that living in a two-parent household is not a protective factor against CPA.

Severity of abuse was assessed using a seven-point scale that assesed whether abuse occurred at all, whether it occurred at least weekly, whether the mother was the perpetrator or there were multiple perpetrators, whether the abuse lasted for more than one year, and whether injury was severe. When predicting adult outcome, however, severity was not more useful than a dichotomous measure of whether CPA had occurred or not. This is not saying that severity is not important. Rather, they may be the specific dimensions of severity measured that were not significant. This finding needs to be replicated.

Other variables that were assessed where the quality of the family environment and childhood stresses. The quality of a family environment was measured using nine items for each of the following four dimensions: conflict, cohesion, expressiveness, and organization. I could not make out how childhood stresses were measured.

Adult outcomes were measured with a variety of scales, measuring self-esteem, depressed mood, life satisfaction, satisfaction with social support, social adjustment, and the presence or absence of a psychiatric disorder or alcohol problem.

As I said, severity of abuse did not predict adult outcome better than whether abuse occurred at all, so when adding family environment and childhood stress into the model, the authors used the dichotomous measure of CPA. As the authors expected, family environment contributed significantly to adult outcome. Particularly, conflict, cohesion and expressiveness were correlated with all seven measures of mental health. When childhood stress was added as a variable, family environment remained a significant predictor of the women’s outcome. Childhood stress alone was not a significant outcome predictor.

Reference

Griffin ML, Amodeo M (2010), Predicting Long-Term Outcomes for Women Physically Abused in Childhood: Contribution of Abuse Severity versus Family Environment. Child Abuse & Neglect, 34(10):724-733. DOI: 10.1016/j.chiabu.2010.03.005.

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Adult Autism Outcomes Vary Considerably, Study Finds

A recent study examined adult outcomes on education, vocation, independence, friendships and intimate relaitonships, for people with autism spectrum disorders. Comparisons were made between adults diagnosed with ASD in childhood and those diagnosed in adulthood, and between people with and without comorbid intellectual disability. It was found, not surprisingly to me, that the presence of intellectual disability was a significant predictor for poor functioning. This is, however, not supportive of different forms of autism, but rather, of the fact that multiple disabilities interact and complicate a person’s situation, usually leading to poorer outcomes as compared to people with either disability alone. I’d have liked to have seen an analysis of the outcomes of people with and without comorbid mental illness, too, but I assume there is a reason this wasn’t done.

With regard to comparisons between people diagnosed in childhood to those diagnosed in adulthood, there was no difference in functioning when people were assessed prior to age 25. In other words, for autistics under age 25, there is no reason to assume they must function better or worse if they’re diagnosed after age 18, than those diagnosed in youth. For those who were over 25 at the time of assessment, there was a difference in functioning between those diagnosed in childhood and those diagnosed in adulthood, but this difference may be explained by the fact that those diagnosed in adulthood were on average about ten years older than the childhood-diagnosed group at the time of assessment. Therefore, they had approximately an extra decade to “catch up” in functioning. It is quite possible that the childhood-diagnosed group would function at an equivalent level if they’d been of the same age to the group diagnosed in adulthood.

The authors, lastly, emphasize the extreme variability in functioning found particularly within the group without intellectual disability. Note, however, that this was the vast majority, so I don’t think there is any reason to conclude yet that those with intellectual disabilities are uniform in functioning; their subgroup size may’ve been too small to be able to judge that. The attainment of intimate relationships was the goal least likely to be achieved, but even on this domain, there were people who achieved appropriate functioning. With regard to the other domains, there was huge variability, from people living in isolation on disability benefits to a successful university professor. It is unclear what factors actually influence these outcome variables: the authors say that few people studied had ever received targeted interventions (ABA, etc.), but a generally supportive school and home environments did contribute to better adult outcomes.

Reference

Marriage S, Wolverton A, and Marriage K (2009), Autism Spectrum Disorder Grown Up: A Chart Review of Adult Functioning. J Can Acad Child Adolesc Psychiatry, 18(4):322-328.

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“Where Will You Be In Three Years?” Revisited

One day in September of 2006, I was seeing a psychologist at my former training home’s agency. I have never really understood what his job was supposed to be, but he ended up recommending I be referred to mental health. Anyway, in the midst of a very long, exhaustive conversation, he for some reason asked me where I thought I would be in three years. I said that I had no idea, but proceeded to fill in some details anyway. Later, on September 22, 2006, exactly three years ago today, I wrote about this painting of a future image for myself on this blog. I didn’t really say that I had no idea what I might be like in the future, but really that I had many ideas that were all blurring together, some incompatible with others. Mostly, I made a clear distinction between the capable college student image and the incapable, disabled person image. My definition of “total incapability” was like this:

Yet there is also this part of mine, that totally incapable girl. She thinks she requires a lot of assistance cause of behavioural/social/communicative difficulties – not just disruptive behaviour. She sees evidence, in the fact that I was at first unable to buy a railroad ticket a few weeks ago (cause the situation confused me), that she can’t do these things for herself (I can buy railroad tickets perfectly well) and, in the fact that Renee left cause she didn’t know what to do, evidence for the idea that she’s truly too difficult to handle and belongs in the mental health system. This is not saying I need 24-hour care or something, but what it says is that I have fundamental impairments in social/behaviourral/communicative functioning that aren’t going to go away once I’m learning to adjust to some emotional difficulties, and that do require to be addressed after I leave training home.

In a sense, I am glad I no longer hold this standard, cause it’d require me to have less than zero self-esteem. In fact, by this definition, the verdict of “total incapability” was already out by February 21, 2007, when the mental health Apeldoorn doctor referred me for treatment.

Do I no longer struggle with these images, now that the black one has more than come true? Well, I still do, but in a sense, it’s on a different level. I was, after all, very, very naive at the time even to hold the possibility that my behavioral, social and communicative issues would go away without any treatment. This just isn’t going to happen: as an Aspie, some situations will always be problematic for me, and I must learn coping strategies for handling them. My meltdowns are also quite likely to continue to be a weakness for me, and I must learn alternative behaviors instead (and just for the record: I never said I didn’t want this!). I’m pretty sure I was already aware of this to some extent back then, since why else would I so consciously want to disassociate myself from this “autistic” image?

Of course some beliefs I held back then are incorrect in general, but may possibly be correct in my case. For example, I assumed that needing assistance in structuring one’s daily life or in interactions with others, would be intrinsically incompatible with competitive employment or regular education. There recently opened a supported housing accommodation in my city just for autistic college students, and their explicit goal was to help more autistics graduate, so that they could actually get real jobs and get off benefits. In general, it is a huge prejudice to assume that this is impossible. After all, what does assistance with structuring one’s daily life have to do with college-level intellect? Maybe some of these people will end up in dreaded academia, but why is this the nonsensical field I wrote it off as in 2006? We need professors, too. In fact, sometimes I wish I knew how to acquire the skills to go back to university.

That is my current most optimistic self-image: just going back to Radboud. Not really to get into academia someday, since I can’t look that far to the future and if you want to get into top graduate programs, you have to plan for it way in advance. Actually just to enroll in an undergraduate program – my boyfriend is making me jealous, since he started in philosophy this year -, and see that I get my Bachelor’s degree. I am not sure whether there are any independent living requirements for this – the supported housing place I mentioned above, would not be suitable for me, since it is in many ways a training home.

My current black image, the worst self-image that I can think of, involves me in an isolation room of course, and from there on, another long stay on a locked ward. I’ve been there already, and I know that I was way better behaviorally when reso rejected me from there last year, than I was in 2006. Of course, the staff are telling me that, should I ever need to be sent for a time-out at the locked ward, it will only be for a short while, but I don’t believe this.

Unlike maybe in 2006 – I am not sure, since I don’t remember it that well -, I also have in-between images. There is this image of me ending up in some community-based supported living accommodation and doing volunteer work, taking informal classes at a community center, studying at Open University, and/or attending some activity center to pass the time. There is also an image where I end up staying in some (semi-)institutionalized placement but function quite well and don’t need threats or time-out systems anymore.

Of course, I know that life can get yet even worse than being on a locked ward. Prison, a state mental hospital for criminals, and a homeless shelter are all worse. I hope I won’t end up coming back to you in 2012 to tell you that this is exactly where I ended up. Then again, I guess I need to be lucky that these places won’t have Internet access.

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Did the Disability Service System Ruin Me?

Today is August 22, the day that I “celebrate” my entry into the world of disability services each year, because on this day in 2005, I started blindness rehab. A recurrent issue in my experiences with the disability system is, of course, the question of whether disability services made me better or worse. This year, contrary to in 2006, the question is not whether I came out better or worse, but whether the disability service system is at fault.

“At fault” is a black-or-white term, meaning that I might’ve come out better if I hadn’t gone through all these disability services, or I might’ve come out even worse than I’m now. My worst case scenario of what 2005 would’ve been like if I had gone to Nijmegen right away, involves psychiatric hospitalization, and from that point on, it would’ve been speculative what the staff would be doing with me. I might’ve come out better – the “if we’d known then” type of thinking from training home staff -, or I might’ve come out worse and become one of those autistic adults never getting properly diagnosed or supported because the entire mental health system is clueless unless you specifically ask about it (which the psychologist the training home staff consulted, did).

The other scenario, the one my parents like to believe, involves me doing all great and never needing any support at all beyond that deemed “normal” for the blind (and then we have to debate whether housekeeping assistance or adaptive transportation are “normal” – most of my blind friends think they are, but I’d never thought of getting them in 2005). English is an easier subject to major in than linguistics, so I’m pretty sure there would’ve been fewer barriers to my accessing the curriculum. However, that is not something anyone pushed me into: I was the first to say that I didn’t like English as a major anymore, and the majors staff have pushed me into, mostly are more accessible than linguistics turned out to be. Furthermore, this would not have changed my situation with regard to my inability to cook, travel safely or manage my paperwork – in fact, my skills were a lot worse.

However, actually, I have no way to compare my current situation to the one I might’ve ended up in if I’d not started becoming involved with disability supports. After all, this is the way it is and I can’t turn back time. With the actual claim my parents make about the problems with my having been surrounded by disability service people, this is however not too relevant: they say the disability service people ruined my self-esteem, thereby causing me to feel incapable of making it in college or in independent living.

Besides the question of what self-esteem really is – the belief that you can do many practical things for yourself, the belief in your ability to make your own decisions, a positive feeling of self-worth, etc. -, that would all lead to different answers of whether my self-esteem has been ruined – and, was it all that good to begin with anyway? -, there is the question of how much part the disability service system, or the broader care system, has had in this. After all, no-one actually said that I can’t go to university. The most skeptical person at training home, who once sent me a Sonneheerdt (vocational college for the blind) newsletter, pretty soon knew that she was alone in believing I could not go to college, especially after I started at Saxion. The plan had all been laid out quite clearly by the summer of 2006 and no-one was openly questioning it or even making doubtful comments like “How are you going to do ___?” after the end of 2006. In fact, all people were relatively optimistic and confident that I’d meet up to the standards of the follow-up living place – except for me.

Then maybe the rehab center did all the wrong to me, because apparently my self-esteem had already been destroyed. Well, no, they did not. In fact, everyone knew from the start that I was going to transfer to college and independent living by 2006, and no-one ever questioned those plans. They did realize that I’d need some more real-life training, but I’d get that at training home – and for clarity’s sake, I was the one who decided to delay college a year, without any staff member proposing I do.

So, is it that I’m just a lazy, insecure, little baby who got all the good kicks in the ass until she eventually got her way by making some suicidal threat, and is the only person at fault the psychiatrist who took it seriously? Should I be pushed and pulled through life like I’m a wheelbarrow forever, because otherwise I’ll become one of those poor, disabled people who believe that the world owes them a living? Well, goal-setting is not a bad thing, if it is a goal that the person (ie. me) agrees to. The current aim for me is to go to a supported living place called Glasnost, and in a way I’m glad that the people here haven’t given up on it despite my continuous nagging about my not meeting the criteria. Okay, there are more alternatives in which I will have an equal level of independence and that are less strict on admission criteria, so I do have a problem with them sticking to one place only, but it is not that I despise them wanting me to go into supported living at all. What I do have a problem with, and what ruins my self-esteem actually, is something not just care people do, but my parents all the same: setting long-term goals without short-term objectives to get to that goal. I eventually did realize that one short-term objective could be to at least get something to do during the day – even though it’s not something that Glasnost will accept -, if the long-term goal is 32 hours a week of outside day activity, so I applied to Open University. With regard to the other goals that going to Glasnost implies, however, I have no clue how to set short-term objectives, let alone how to reach them – and I estimate that without help it’ll take me years to find out.

This attitude is pretty common among care professionals, and it’s probably all the more common among care professionals who know they will be dealing with you temporarily. I encoutered this quite openly at the rehab center, where, whenever I raised a concern about not reaching my rehabilitation goals, my counselor came up with: “But aren’t you going to go to ‘De Boomgaard’?” I solved this problem by not making my definite decision to go to training home till a week before finishing my rehab program, and by insisting that I wasn’t there but at the rehab center now so we should stick to the goals and objectives I had for rehab. I cannot do this at this point, not just because I already applied at Glasnost, but also because my current placement is an admission ward and really doesn’t care all that much about resocialization goals. That’s what the resocialization ward is for, but then if only I heard the social worker and nurses say: “But you’ll go to reso!” Then it would make sense, except for the goal that I manage my behavior enough to do without a time-out policy – which I think I do, but the staff are skeptical -, because if I fail on that one, reso cannot put me into time-out. Unfortunately, it’s not what the people say. “But you’ll go to Glasnost!” is what they exclaim. That is exactly the same as if someone had told me in 2005, when I asked about learning to cook: “But you’ll go to Nijmegen, right?”

It is pretty appealing for a service agency to pass an issue on to the next one. After all, it means that there is no need for creative solution-finding when “standardized” strategies fail, no need for periodic evaluations that determine intervention strategies – I didn’t get a periodic evaluation at rehab even though I should’ve gotten one -, no need to take a real, hard look at the goals and determine their realism, and, ultimately, for the disabled person, no need to progress. Long-term goals, with neither short-term objectives nor intervention strategies, aren’t going to drag me out of my comfort zone – in fact, they push me further into it. Of course I will be homeless if Glasnost isn’t going to accept me, but I’d much rather spend the time that I’m still waiting for Glasnost’s waiting list to end by reading Oliver Sacks or playing cards than by worrying about the future, if I have no clue how to change that future anyway. Because I know that I’d much rather not become homeless at all, I used to keep pushing for short-term objectives and strategies, but at one point I’d heard the classic “We don’t specialize in autism, wait till you’re at Glasnost,” so often that I gave up and retreated into Oliver Sacks’ books. I’m now most often arguing about what will happen if Glasnost turns me down, but the answer’s still the same. It’s not that I want to be homeless, but just putting up a bar of expectations somewhere on a far-away star and telling me to reach for it, isn’t going to give me a space shuttle, either.

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Autism Diagnosis One Year Later

Today, it’s one year since my autism diagnosis, and I wonder if it changed me. Of course, I don’t need to wonder whether I changed during this year – obviously I did -, but whether the diagnosis is at fault. And, associating from there, I wonder whether services that I got because of my autism have helped me or, like my parents think, only caused me to deteriorate. Does my diagnosed autism explain existing difficulties, or does it give me an excuse to invent new ones?

I want to say the autism diagnosis didn’t change me. I want to set the facts straight, that I never did well in high school and had been falling apart from late 2004 on. I want to make clear that I went to the rehab centre in 2005 because I wanted to improve my blindness skills – and I did improve them. That I went to training home in 2006 to refine my independence, and that I learned quite a lot as far as practical skills go, but failed to implement them into a stressful daily life. I want to say that I went to mental health Apeldoorn because of my meltdowns, that had been going on for many years. This is the one thing my parents agree with. I want to say that my diagnosis didn’t change my plans – after all, I was still going to study linguistics at university and live on my own. I want to say that I didn’t choose to get into crisis. I want to say that I still want to make something of my life. I have dreams of going back to school. And yet, there is still a voice in my head that says that if I truly want to prove all this, I ought to release myself from the hospital, go back home, kick out all my support staff, make sure I get a housing transfer to another city where the universtiy staff don’t know about my failure in 2007, and go back to university as someone who is just blind. I succeeded – at least, on the outside – for twenty years, so why not more?

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What If I Weren’t Disabled?

“If you hadn’t been disabled…” Many non-disabled people assume that I would’ve been far better off without one or both of my disabilities. My mother hears of a blind, non-autistic acquaintance of my sister’s and wishes all blind people were alike cause then I would be able to do fine at university and live on my own. My father is convinced that I’d have majored in something technical if I hadn’t been blind. Maybe, as a sighted NT, I would’ve majored in biology and lived in a college dorm like my sister. But maybe not.

The first strategy people, including people with disabilities, use to define what life would’ve been like for someone if they hadn’t had their disability, is to define the ways in which their disability is limiting them. For example, I dropped math and science and biology in high school because I wasn’t able to see the graphics one needed to see to follow these subjects, and I almost failed communication skills last year because I wasn’t able to apply the concepts we’d been taught to the given situation. And, when it comes to independent living, I’m not able to manage my own mail cause I can’t read it, and I’m not able to attend formal meetings at agencies alone because I get confused when I don’t know what’s expected of me. This seems to be a fairly surefire way of assessing what life would be like without a disability. However, not really, cause it isn’t black or white. I know a blind biologist, for instance, and several autistics who earned college degrees in social subjects. I also know many other people who don’t have disabilities, who failed math and science and biology and several who failed communication skills last year.

Another strategy is to compare me to people who don’t have my disabilities. This is easier when you have more than one disability, because that way you can discard one disability at a time, and images of someone with one disability, are less diverse than the non-disabled population. So in order to determine what I would’ve been like without autism, just take a blind person who you think has all other important qualities that I have, and decide that I would’ve been like him or her without my autism. In my case, the only important quality is intelligence, so you pick a blind person with high intelligence and decide I would’ve been like that person. This means I would’ve been successful at college and lived on my own. Same with an autistic – even though many intelligent autistics don’t live on their own or go to college, but as someone not involved in tha autistic community, you’d only have known the people who make it onto TV.

The problem with this strategy is, of course, that you can’t find someone who is exactly like your disabled loved one, but without their disability. I don’t know my sister’s blind acquaintance, so how can I be sure that we’re alike aside from the autism? Most likely, we’re not. And where do I find the autistic who has the exact same expression of their disability, and all other qualities the same as me, but who is sighted? I haven’t been able to find such a person.

Then comes the next strategy, which is to compare the disabled person to your image of them before you or they were aware of the impact of their disabilities. This is, in my case, especially possible with my autism, cause I wasn’t diagnosed till age twenty. So you take the expectations you had for me before I was diagnosed with my ASD. Clearly, this image includes success at college and living independently.

Of course, it is possible not to start experiencing visible problems until you’re diagnosed, or to have the problems worsen after a diagnosis, especially when you’ve long pretended to be normal and are now dropping a facade. However, in my case, have I ever actually been successful at college or lived independently? No. And in 2004, when my future image was drawn by my parents, did I have the skills to go to college and live on my own? Not at all.

Then again, is it really about disability? Or is it that the disabled person is not meeting up to what you expected them to be doing, and you chalk it up to disability because this is all you can imagine chalking it up to? Then realize how many non-disabled people are not meeting up to “normal” standards. Not everyone who graduates from my high level high school, will go to university, and many people live with their parents till they’re 25. Of course, statistically, disabled people are more likely to need support and less likely to go to college, but people aren’t statistics, are they? And, especially with someone with congenital disabilities, you cannot see the non-disabled person behind the disability, simply because there is none.

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So, What Should My Outcome Be Considered?

On September 22, I painted three different images of what my situation might be like after leaving training home. One is described like this:

Yet there is also this part of mine, that totally incapable girl. She thinks she requires a lot of assistance cause of behavioural/social/communicative difficulties – not just disruptive behaviour. She sees evidence, in the fact that I was at first unable to buy a railroad ticket a few weeks ago (cause the situation confused me), that she can’t do these things for herself (I can buy railroad tickets perfectly well) and, in the fact that Renee left cause she didn’t know what to do, evidence for the idea that she’s truly too difficult to handle and belongs in the mental health system. This is not saying I need 24-hour care or something, but what it says is that I have fundamental impairments in social/behaviourral/communicative functioning that aren’t going to go away once I’m learning to adjust to some emotional difficulties, and that do require to be addressed after I leave training home.

Today, Arda wrote my request for funding for services once I’m in Nijmegen. It finally gave me a clearer picture of where Arda thinks I’ll be on the independence ladder, and one that I agree with. Yet it also means I can now view in my mind the rainbow that my situation has become. There are colors for the housekeeping assistance I’ll need, the independent living support cause of my blindness (reading mail etc.) and cause of my autism spectrum condition, the mobility training I’ll need to learn new routes, support for attending college, and mental health services. And that same rainbow today was black in September. What’s changed?

The biggest thing that’s changed, is actually my attitude. You may think of this what you want, but I think it’s a change for the positive, because I stopped thinking of myself as “totally incapable”. I’m far from that. I certainly do have my difficulties, but I’ve realized – even though it’s not yet a solid realization -, that these don’t alter my abilities. You may think my situation has deteriorated, but I really didn’t lose any skills. All I lost were images of what I might become. Or really, I only lost one image. After all, I can still be a responsible user of services, like many self-advocates are. So maybe what I really did was to realize that a situation in which I need many independent living services and am in the mental health system, doesn’t mean a situation in which I can’t be responsible or a situation where I’m unable to go to college. How stupid from me for writing myself off as “totally incapable”.

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Thoughts on “Realism”, My Current Situation, and Self-Confidence

Now that my “real(istic)” situation seems to have been defined on Monday – well, mostly, cause they do want to wait for the mental health thing to be finished before having me leave -, I keep having images in my mind about what my situation was like when I first came here, how it evolved, which it is now, and what in all these images denotes “realism”. And I wonder about those statements made by my parents, who pretty much assume that my core problem is a deep lack of self-confidence. What is being self-confident, anyway? The definition has changed over time.

In early 2006, when I first came to training home, I seemed extremely self-confident on the surface. Self-confident in the way my parents seem to mean it: determined to make high achievement. I remember making a “statement” on January 23 – five days into being here -, by calling Radboud’s student counsellor, which was really not an urgent matter. The only reason why I did it, was to show the staff that this was where I was going to be. Three days later, I convined Renee to allow me to travel to Nijmegen alone. That travel marked the first scratch to my thin surface of self-confidence: I made it to Nijmegen and back, but not in the flawless manner I’d imagined I would if I were the competent blind adult I thought I would be.

The month of February was characterized by what Kenneth Jernigan calls “rebellious independence”. I had frequent arguments with Renee over wanting to do things independently and Renee not allowing me to. The most notable examples were the route to the supermarket and having breakfast in my own apartment. By the March 6 multidisciplinary discussion, the folks created the positive image of me that I wanted them to have. I still suspect that Arda really pushed Renee on this matter. I ate in my own apartment for breakfast, started cooking with Ellen, was not supposed to be saying I had a doorknob’s social skills anymore, and Renee wanted me to think of how I wanted to live once I was in Nijmegen. It never got to that, cause the self-confident facade fell off on March 21.

From then on, I spent my days living in the here and now, and, for so far as I did future planning, it really had no relevance. In my career psychology paper, I wrote: “This usually had the form of at random appearing images that I first idealized and then threw into the dustbin using a standard procedure.” Starting in March and decidedly ending in early October, I used an approach where I believed “realism” would form itself over time and experience would teach me what my real situation was like. I never really abandoned this approach, even though I decided I would. The way of looking at my situation has its good parts, in that it is looking at the factual, natural situation I’m in. However, it has its major drawbacks for me personally, in that I have a real problem seeing the forest for the trees. You see, there are always pictures of my situation, but who knows which is definitive, or so definitive that it allows one to decide I’m done training? Even as early as late October, I openly worried to Renee that we would be going on just experiencing the situation as it was and not taking any steps to direct it till, after so many months, it’d be time to have me leave and the staff would look at the situation of that very moment and decide that was “realistic” for me. Is this what happened last Monday? Sometimes, I can’t let go of the feeling it is. You see, no-one is going to tell me that last week Saturday was not the triggering event to decide I was done training. I know pretty well that Renee wanted to kick me out, but Arda did not. Saying I’m done training is a way of allowing me and Arda to seriously plan for a living situation after I leave rather than just kicking me out – that’s probably why Arda has such a problem with my even mentioning the phrase “sending away” in reference to the June 1 thing -, but of course the thing is that I did behave so badly that Renee wants me to be kicked out.

Does that make last Monday an arbitrary moment for deciding I’m done training? I don’t think so. You see, I already had the idea that I couldn’t ignore my behaviour in painting my picture in early January. At the time, Arda was still assuming I would improve. Not anymore. Now she was the one telling me that I would always need some assistance with creating some structure. And I agreed, not because I would have to, but because that’s what I could’ve been telling her for weeks, but didn’t want to cause I wanted to remain motivated for training. Now does it matter whether Arda or anyone else agrees to the current picture of my situation? In some respects, not at all. Like, my parents don’t want me to get housekeeping assistance. I don’t care: I’ve experienced that it costs me too much energy to do all my housekeeping (especially deep cleaning) when also studying and having my hobbies and social activities, so I’m glad that I can have a professional housekeeper do some of my cleaning. Others would decide on letting their rooms be dirty, and some people would drop hobbies or social activities to do housekeeping. It’s my decision not to and I made that decision already a few months ago – in fact, I didn’t have major difficulties with it on September 22. The blind community might believe I buy into stereotypes, but I don’t care. I want to have a nice life, not spend my whole life pouring energy into conforming to some picture of what a competent blind adult is supposed to be like. If that’s lazy, so be it.

However, having a housekeeper do your deep cleaning, is not considered a problem by most people when you’re blind. Some people have different attitudes about blindness and what it’s supposed to mean, but I can be happy telling them that’s their personal opinion and I don’t care whether employers are having negative attitudes about all blind people cause they see that I have a housekeeper do my deep cleaning. I know that blind people can do exactly the same that sighted people can if they just pour 200% extra energy into it, but I don’t think I’m obligated, by the fact that I’m blind, to pour that 200% extra energy into life. If I want something, I have to pour extra energy into it, sure – I cannot expect the whole world to adapt to my blidnness -, but, to a certain degree, no-one can require me to do something that I feel costs me too much energy for the value it has to me. Like, of course, if I didn’t get funding for hiring a housekeeper, you might think I’d be forced to do deep cleaning myself, but really, I wouldn’t: I could decide to let my room be dirty. Sure, my blind acquaintance who did do all her deep cleaning and hence had an extremely neat house, might not get a job cause her employer had seen my house and thought all blind people keep their places dirty, but that’s not my responsibility.

There is another issue, of course. I wrote about that on September 22, too: assistance required cause I have behavioural problems. This is generally less accepted, for reasons on several levels. First, certain people believe I really don’t have behavioural problems. My mother sometimes holds that view, almost to the point of believing the whole world has a problem but I’m fine. It may seem great, cause it’s placing the blame on everyone else and not me, but it’s not, cause I am the one who has to live in this world. You know, mental disorder is sometimes simply a matter of being in a minority and not being accepted by the majority – homosexuality before 1973, for example -, but until most people in the majority are going to make up their minds, is it strange that the minority think they have a problem? That’s why I sometimes say that the real problem is not that I need clarity, but that others can’t be clear – but the thing is, the majority don’t want/need clarity when I do, so I presumably have a problem.

That doesn’t mean I’m suddenly not going to need that clarity, for example. That’s a big problem I’ve always had with that paradigm of Arda’s: whenever she said I needed too much clarity, she seemed to connote that I shouldn’t be having that experience. My mother seems to think so as well, only she calls it “nagging” when I ask for explanations. In some situations, indeed, I may be able to adapt to the fact that there’s really no way to understand – like, I’ve stopped wanting to clear up the Arda/mother argument over my needing to live on the streets when my parents won’t take me into their house, after both have told me a different story about when Arda said that and why -, but sometimes, not understanding has implications. Like, in November, I was expected to change my behaviour at school, and I didn’t understand how. When I stopped asking for clarification even though I still didn’t understand, it meant that I didn’t know how to change my behaviour. The simple idea that the whole world has a problem but not me, or that my only problem is that I think I have one (which the wanting clarity when I cannot get it may be interpreted as, too), isn’t going to make my life in this world easier. What’s the problem with seeking help with this?

One thing is, which I highlighted on September 22: the risk of having responsibliities taken away. But I don’t think that this is an intrinsic problem in having services on the grounds that you have a behavioural or mental health problem – whether it’s mental health services or independent living assistance or whatever. You see, there are really skilled self-advocates who do have services on this ground. In this sense, I’m inspired by Amanda Baggs. I don’t feel inspired by how little assistance she thinks she needs (self-confidence as it’s used by my parents), but by how self-confident she is about knowing what she needs and advocating for that. Of course, you’ll say, I’m not like Amanda Baggs, cause she – being severely autistic -, has much more serious behavioural/communication problems than I do, so she requires much more assistance than I do. I agree, but that’s not my point. My point is that my situation is my situation no matter what. I might be able to progress in whatever way, but at this moment, this is how my reality is. In 2006, I stood firmly for an imaginary me that was realistic in some ways (like being a college student) and not in others (like having no behavioural problems at all). Now that I have a more realistic image of myself – or think I do, at least -, I want to stand firmly for that as well.

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Thoughts on Paradigms about My Situation and Staying Motivated for Training

Made some good progress in book scanning this evening. In fact, I finally finished scanning all my readers for this quarter except for the communication psychology reader that I still have to buy next Monday. The career psychology reader was difficult to scan and we have a really difficult assignment for this class. Arda seems to love it, cause one of the theories discussed has something to do with decision-making. It’s her ultimate paradigm. Not mine anymore. “Realism” can’t happen without decision-making of course, and not deciding – or not deciding what others want you to decide – is as much a decision, but I’ve greatly come to dislike the connotation that you can be whatever you like as long as you make a commitment to it.

My situation, as far as how I imagine it, is by far not as confusing as it used to be anymore. For example, I have only two possible college majors now instead of seven or more. I also got some things clarified in these few months, like how I will be doing administrative tasks. My image of my overall situation is still utterly unclear, and that’s why I want to remain motivated to change. It’s also sort of related, I must admit, to the fact that Arda still seems to believe there’s a very capable, almost completely independent girl hiding behind this image of my current situation that I painted yesterday, and hence any lack of progress is seen as a lack of motivation or willingness to change, for whatever reason, not as something that’s just realistic for me, like all the other clients’ outcomes were presumed to be. One girl named Marije had been in training home for maybe as long as four months, fully aware that her current situation was all she could achieve, only waiting for a place to live where she could get the assistance she needed. Everyone knew for months that, cause of her brain damage, she just wasn’t able to live fully independently. That’s not my situation. My “care plan” still lists that I’m assumed to be able to go to college or university (full-time, presumably) and live in my own apartment independently, provided I learn necessary routes, by September, 2007. I’m still motivated to work towards that goal, even if I’m pretty pessimistic especially regarding the independent living part, but I really hate the connotation that whenever I don’t seem to be meeting up to that standard, I’m presumed to not be trying hard enough or not wanting to make decisions. I don’t want to give up, cause giving up means being unwilling to put effort into something. Yet at the same time, I sometimes just really have no idea how to do something or I really don’t understand. This happens quite often, in fact. And just because no-one knows how to teach me to do the thing or how to help me understand, doesn’t mean I’m not trying hard enough.

Lately, I’ve gotten increasingly sick and tired of the ever-changing paradigms held by staff members. They’ve already said ages ago that they have no idea how to deal with certain problems of mine, and I’ve long known that neither do I. That doesn’t mean they need to accept my behaviour – they don’t. Like, with some behaviours, it’s obvious (aggressiveness, for example), but they could even say that they can’t deal with my getting “locked up inside” for example, so I’d have to leave if I didn’t improve this. Still, this doesn’t mean I would deliberately act this way. All it means is that my behaviour is so inappropriate that training home isn’t the right place for me anymore. On Wednesday, for example, I was pessimistic. That’s not cause I want to freak out, but cause I’ve known from previous experiences that just making a commitment to not behaving badly, didn’t mean I wasn’t going to freak out. It’s behaviour, and behaviour can change, but it is only going to change with appropriate strategies. I think I mentioned this before, but a few months ago I watched this parenting programme on TV. A five-year-old was constantly whining and screaming for his mother’s attention, so the psychologist advised her to ignore the tantrums and reinforce appropriate behaviour. Suddenly, the kid began to ask her for what he wanted. I’ve always wondered how he knew that this was how he was supposed to act and how he managed to put together the right words for each of his questions (that were pretty well-worded and polite). In other words, of course I can learn to behave. Even if I’m “crazy”, I can. However, just knowing that I can’t freak out, or should speak, or whatever, isn’t going to make it happen. That’s why I asked, on Wednesday, what I was allowed to do instead of what I wasn’t. I got no answer, or I got one that I didn’t understand but then I don’t remember. If no-one knows how to deal with my behaviour, that doesn’t mean they have to accept it, but it doesn’t mean that, if they stick a paradigm on it that assumes I can change it if I just commit myself to it, I’ll suddenly be acting normally, and neither does it mean that, if they stick a paradigm on it that assumes my behaviour is somehow “part of me”, that the hope for change is diminished. Arda can hope that I’ll learn not to get “locked up inside”, and I hope for the same, but at this moment I don’t believe it cause I don’t know how I am going to achieve it and neither does anyone else.

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