Passing for Less Disabled

Chally at Zero at the Bone has a post up about invisible identities and the effects of passing. Passing is the active or passive quality that gets people in minority groups to be perceived as part of the dominant group. Examples would be someone with an invisible disability being passed for abled, someone in a racial minority being perceived as white (in a whitecentric society, of course) and someone who is trans or non-binary being perceived as having a cis gender identity.

Because I belong to the dominant group in many of these areas, the only situation in which passing is relevant for me, is disability. In my experience, it does not involve passing for abled entirely, but passing for less disabled than I am. This means that I at once still faced some disablism, and escaped a hell of a lot of it that I would encounter once no longer passing.

Passing is a complicated matter, and, when it is “imcomplete”, it gets even more complicated. Passing for partially sighted when you are blind, for example, gives you just enough sighted privilege to be excluded from or treated like a supercrip by the blind community, but not enough sighted privilege to be even conditionally fully included in the sighted community. It has an advantage in the blind community, where the hierarchy of vision rules. I, apparently, at one point eagerly participated in the competition of sight, although I never made it high on the hierarchical ladder. I would have to consider this a form of internal disablism, and it includes the same sterotyping, marginalizing and exclusionary practices that all people perceived as disabled face from a dominantly abled society, and the same privileges awarded to people who successfully pass for whatever is deemed the “standard” within this disability group. Among the blind, this depends on which exact community you participate in: in certain blind organizations, the totally blind, especially if they have superblind qualities (ie. perfect mastery of alternative techniques and/or fabulous accomplishments), stand highest in the hierarchy, while at my former schools for the blind and at the rehabilitation center I attended, those with the most vision were always dominant.

Within the field of disability, people who have one disability are also privileged over those who have multiple disabilities, and, again, passing awards you privilege. There is, in this sense, again a lot of internal disablism, with some of it motivated by malice, some more by inconvenience (“We don’t have enough time to advocate for people with multiple disabilities.”), and some stemming from ignorance about the reality of people outside one’s own narrow scope of specific, single disability. Before any singly-disabled person objects that they aren’t the Big Bad Oppressor, I’m not saying that. In fact, I myself at least used to be guilty of this same form of disablism, in some pretty nasty ways, such as my bullying a girl with visual and intellectual impairment for her “dumbness” in elementary school, and I’m likely still affected by stereotypes.

However, let’s face facts: advocacy groups of disabled people tend to focus on people with a specific disability, thereby being more successful in fighting for barrier removal for and against discrimination of people with that specific disability, sometimes on a conditional premise that people with that disability can accomplish the same achievements as non-disabled people if given proper training and opportunity. This premise, of course, excludes people who do not meet these standards, which are more likely to be people with multiple disabilities. But even if a disability advocacy group does not set exclusionist standards for representation, people with multiple disabilities will still have a harder time being heard, simply because they make up a minority within the minority. That way, disablism rooted in ignorance may occur: the advocacy group simply didn’t think of advocating for the needs of people with multiple disabilities, or lacked the resources to know how to advocate appropriately. Therefore, barriers are kept in place that may have been struck down for those in the single-disability movements.

Passing helps a lot in such circumstances. For example, I would never have graduated from, and may not have been accepted at my high school if I weren’t passing for neurotypical. Inclusion, at the time, was voluntary in the Netherlands, and even now that there is legislation promoting it, those who are somehow “too difficult” can still be excluded. I bet a dual disability of blindness and autism falls under the category of “too difficult”, but because I passed for neurotypical, I was accepted. In this sense, passing has its advantages.

Like in any other situation where passing is involved, however, it has its flip side, too: the privilege awarded to those who are passing, is conditional. You will only be privileged as long as you pass. This puts a huge burden on the person who is passing: if they no longer pass, they will not only lose the benefits their passing privilege awarded them, but they also run a risk of being shamed, blamed and offended for no longer passing, even if they never made a choice not to try to pass anymore (or if they’d never been trying to pass in the first place, but had been passed by others anyway). For example, when I passed for neurotypical, this was seen as a good thing by non-disabled people (and most blind people), and increasingly having been unable to pass has led some people to be pretty hostile towards the fact that I’m not “just blind”. This started long before my autism diagnosis, by the way, sometime around 2003, but the autism diagnosis, and the fact that I embrace autism as part of my identity, hasn’t helped. Maybe, of course, I would’ve been better off if I had equally embraced my autism but hadn’t been institutionalized. I am not sure about that though, since the people who now despise my autistic identity, did so when I still lived on my own, too.

Related to the blaming of people who used to be passing but no longer do, is the assumption that passing or not passing is always something intrinsic to the person’s own characteristics or choice: either your disability has gotten worse so you can no longer pass (for example, if you start using a low vision aid because you can no longer read the newspaper without it), or you have chosen not to pass anymore. The first is usually more acceptable than the second, although which is which cannot often be objectively assessed. For example, if someone gets a terrible headache and eye fatigue from reading the newspaper without a low vision aid and it takes them twice as long, this could be perceived as either a matter of the visual impairment becoming worse, or as a willful choice not to put effort into reading newspapers. However, as Chally also points out, this view of passing as internally generated fails to acknowledge the fact that it’s the non-disabled people who decide what passes you. For example, if you visibly struggle to read the newspaper but are not using a low vision aid, some people may think you are visually impaired, but some may also think you are just a slow reader, forgot your reading glasses or need a new prescription (and the need for reading glasses is not usually perceived as a disability), or even that you are willfully annoying them by readind the paper that slowly. Some people may not perceive someone who uses a low vision aid as visually impaired, while some may recognize the device and decide that the person must be visually impaired since they are using it. This subjective view of what is and is not perceived as a sign of disability, is even more prominent when talking about mental or neurological disabilities or invisible chronic pain conditions like fibromyalgia. Pain may not be seen, if the person is trying not to complain, and even if it is seen, people may automatically attribute it to the wrong causes, or assume the person is exaggerating. Autistic behavior may be viewed as a sign of disability, as a sign of wanting to annoy other people, as “just weird”, or as something indicative of a presumably positive trait, like perseverance or intelligence. These attributions are not inherent in the person’s level of disability or the disabled person’s choice to pass or not to pass. They are other people making these attributions, after all. The disabled person passes because somene else perceives them as non-disabed, not because they themselves wear a sign that reads “I Am Not Disabled”.

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Michael Crisafulli’s Autism Doesn’t Turn His Trial Into an Autistic Rights Issue

Recently, an allegedly autistic, 13-year-old boy shot his father. I haven’t seen any neurodiversity coverage of it yet, but then again I don’t read the major neurodiversity blogs all that often. The boy’s alleged autism is really only a minor part of the story, in the sense that his grandmother’s statement is not verified anywhere else. I happened to come across the story via an autism news site, so that’s how I know.

Should it really be about autism, actually? I don’t think so. There are enough controversies in this story without adding autism into the mix: the father’s huge gun collection, from which Michael got the gun he shot his father with, for example. Gun control is a really controversial issue in the U.S., and as a European it is probably calling for a flame bomb if I suggest people shouldn’t be owning handguns, let alone keeping them within children’s reach. Nonetheless, I can’t help but wonder how many shootings can be prevented if fewer teens have access to their parents’ legal weaponry?

Another issue is the fact that Michael’s crime, rather than his age or any of his characteristics really, get him to be tried in an adult court. Children over ten who are charged with intentional homicide are automatically tried in adult court under Wisconsin law. It is possible for the defense to request the case be moved to juvenile court based on individual factors, such as age or mental health. This is where Michael’s autism is brought in: it may be used as an argument to have his case tried in a juvy court. While I am open to the possibility that the disabilities caused by autism could be used as arguments to try someone in juvenile court rather than adult court – in the sense that maybe their disabilities diminish their ability to understand what is happening on a level expected of someone their age -, I also think that any 13-year-old shouldn’t be treated as an adult. Put simply, the crime they committed (ie. intentional homicide) doesn’t make their brains any more adult-like, unless the treshhold for “intent” is really high and you have to use sophisticated logic normally expected only from adults to be charged with this crime. In that case, however, I would assume Michael Crisafulli wasn’t being charged with this crime this easily. I would say that somone’s motives, in a few exceptional cases, could lead to a minro being charged as an adult (and vice versa), but that these motives are independent of what crime was being committed. In the Netherlands, by the way, youth over sixteen can be tried in adult court (and people up to age 21 can be tried in juvenile court) in such exceptional cases, but the default is that regardless of the crime people under eighteen are tried in juvenile court and people over eighteen are tried in adult court. I think this is the best possible system we can have: the cut-off has to be somewhere and, if occasional exceptions are allowed for childish adults and adultlike teens, this will allow most people to be tried with fair account being taken of the differences their age causes. In any case, I don’t see any reason to try a 13-year-old like they’re an adult, regardless of mental health or any other circumstances. Juvenile court is there for a reason, after all.

Really, I am dreadfully awaiting the curebie responses about how this indicates that obviously autism is bad, or maybe I’ve missed them already, since I didn’t check out Harold Doherty’s Twitter or blog over the week-end. This is one child who committed a crime, and we do not know at this point whether autism contributed. As I tweeted to Mr. Doherty a few weeks ago when another autistic was prominently focused on for conspiring to kill his parents, the next time an NT commits a similar crime, I will call out for a cure to neurotypicality. Too bad I don’t check out regular news sources much so that I haven’t found another person committing a similar crime between then and now.

In any case, as much as I dread this, I’m not sure whether I dread it more than neurodiversity supporters who call on Michael’s release simply because he is autistic. I hope really that these people will focus on the broader issues affecting this case, like gun control, children being tried as adults and possibly the problems that led Michael to commit the crime, if they are applicable in a wider framework. The problem is that we know too little about the case to be making reasoned judgments about some of these issues. But we know even less about Michael’s presumed autism, and for heaven’s sake I don’t want this to turn into another Gary McKinnon-like hype. As a side note, if anyone wants to know why I am not advocating for him, check out the excellent McKinnon mythbusting Sarah of Cat in a Dog’s World has done. It isn’t about Asperger’s in his case; it’s about hacking, and, if you think it’s wrong that the UK signed a treaty to extradite its citizens for cybercrimes agains the U.S. government, discuss that rather than poster puppeting Gary McKinnon for your non-cause (because of course most of these people don’t write about cybercrimes at any other time really). In the same way, if autism at one point starts to be relevant in this case, for example if it is found out that it is a significant contributing factor to the crime, or if Michael is treated unfairly based on it (eg. if he doesn’t get reasonable accommodations in prison), I really hope that autistic advocates make a big deal out of it. However, as long as the main issues are relevant regardless of whether Michael is autistic or not, focus on these issues please. If I can find more information, I will do another post about the Wisconsin (and possiblly oteher states) children-tried-as-adults nonsense, since that really stunned me. However, this was the first and last post in which I brought up autism in this case unless it is ever found to have any relevance.

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The Social Model of Disability and Varying Experiences

Recently, there was a Question Time post / discussion thread at FWD/Forward about changing experiences of disability since birth or since whenever your disability popped up. I was not sure how to respond. “But,” I thought, “my disabilities have always been the same. How can I write about changing experiences?” This is as untrue as the moon being made up of green cheese (unless you’re a philosopher). Of course my experiences of disability have changed. Both objectively and subjectively, the social consequences of my medical conditions – which is what disability is all about if you embrace the social model – have changed. Do I need to have a medical justification for that? As in, do I need different diagnoses, changing numbers that describe my “functioning”, etc., to account for changes in my daily experience? Taking the social model of disability, I don’t. And, quite honestly, I could never objectify the changes in the experience of disability I’ve had. After all, I never had objective numbers on most aspects of functioning either now or at any point in my life.

The only things I have objective numbers on, are IQ and visual acuity. My IQ presumably “dropped” by 25 points between age twelve and age fifteen, with approximately ten of these points being attributable to the Flynn effect (ie. the fact that average IQ in a population tends to rise about ten points every thirty years, which tests are accommodated for); the other fifteen points may or may not be attributable to one or more of a multitude of external, internal and chance factors that could or could not be indicative of an actual drop in relative (!) intellectual performance. I was administered another IQ test at age nearly nineteen, by the way, but the report on that test didn’t include numbers. As for visual acuity: it gradually decreased from around 20/400 when I was little to just light perception now. I do not know whether any of the changes in these numbers had any direct effect on my functioning (the times I reported vision loss having an effect, the lessened acuity wasn’t objectified). Besides, they are only two of an almost infinite number of aspects of my disabilities that in most cases can’t be objectively measured in any valid and reliable way. There are, for example, still no reliable tests for social or emotional intelligence, despite what popular sites would have you believe. Tests for executive functioning exist, but usually have very poor ecological (ie. daily life) validity. Tests of functional vision are usually not useful on people who are almost totally blind. And so on and so forth. In short, medical or psychological tests may say some things aobut a person’s abilities and difficulties, but they do not objectify people’s daily life strengths and weaknesses.

Much more importantly, the creators of the medical and psychological assessment tools for our daily functioning or health, are most likely pretty much clueless about the social model of disability. Because the WHO acknwoledges it to some extent in its International Classificaiton of Functioning (ICF), most professionals will have heard of the fact that, besides medically objective limitations, a condition comes with social disabilities. Having heard of this, however, of course will not get an assessment developer to understand its full impact from behind their office desk. And even if some of these people happened to magically understand the full range of social barriers for people with the disability they were interested in, they could not translate these effects into numbers? Should every inaccfessible building a wheelchair user has to enter, be counted? Every minute an autistic has to spend in a sensorially overloading room? Every page of print a blind person has to read? Impossible. And these are the basics, the inaccessibility issues that effect most people with a given disability. What about the individual factors? It is possible that, if people are optimistic, they will accomplsih more than if they are pessimistic. (Don’t be so ignorant to just tell every pessimistic person with disabilities to “cheer up”; it isn’t that simple.) Experiences are different for someone who lives alone, in a large group (either institutionalized or through some other arrangement), with a partner and/or children, with their own parents, etc. The sort and amount of employment, volunteer work or other activities a person has access to, will have an impact. People around the person with disabilities, and their attitudes towards the disabilities, will make a difference. And the list continues almost endlessly. These are not ICD-10 or DSM-IV codes, results on tests, or anything like this, and they can’t be. They shouldn’t be. Life is dynamic for everyone, including people with disabilities. Every life event can change a person’s experience of themselves, including their experience of disability. How we deal with these life events, also varies from person to person, and this also may not be reflected in, say, personality tests.

Besides, of course, even if a person’s way of dealing with life was reflected (to some extent) in personality tests, these would not be accepted as an objective measure of disability in most cases, even if it was very significant (eg. if a person has a diagnosable personality disorder). People are assumed not to be able to change their visual acuity but to be able to change their personality. The same holds true for certain social circumstances. For example, people are usually assumed not to be able to help losing their job in an economic crisis, but they are assumed to be able to help being unemployed due to discrimination. This is a false divide, too.

I am not saying that the effects of social circumstances are entirely beyond a person’s control, or that a person cannot work on coping strategies that will help them deal with difficult circumstances. This will also vary from individual to individual. What I am saying is that social circumstances should not be discounted when trying to understand a person’s experience of disability. They are usually what create the real-life disability much more than the objective measures of health.

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Simon Baron-Cohen Policing Aspies’ Reading Preference

Sarah of Cat in a Dog’s World had a commentary on Simon Baron-Cohen’s Asperger’s adult criteria recently. I did not know anything about them except that they require Asperger’s people to have difficulty in all areas of daily living, rather than just one, and that they consider depression a mandatory feature of Asperger’s. Given that I was asked to fill out the autism spectrum quotient test, developed by Baron-Cohen, as part of my diagnostic assessment, I should’ve known what would come as part of a specification of diagnostic criteria, ie. the insistence on lack of what Baron-Cohen sees as imagination.

Sarah correctly points out many of the problems with the insistence on preferring non-fiction to fiction and preferring museums to theaters. Both of these questions were on the AQ-test, and I at least answered the former affirmatively and am not sure about the latter. I, for one, do prefer non-fiction. In fact, it’s been a year since I last read a work of fiction – and it was really a fictionalized account of something real -, while I’ve read tons of non-fiction books since.

However, I have the exact same problems as Sarah with Baron-Cohen’s categories of “acceptable” fiction. To me, preferring sci-fi or historic fiction does not indicate a lack of imagination at all. In fact, I for one believe it requires quite a bit of imagination not to go mad at the sheer impossibility of what goes into sci-fi books. I happen to hate both sci-fi and historic fiction more than any other type of fiction, for the very reason that I have no way of relating to them.

But apparently, it makes you imaginative if you can more easily relate to a novel based in real life – because, presumably, it isn’t your life, so you aren’t supposed to be able to empathize with the characters -, than to a robot in a science fiction novel. Am I somehow assumed to be more able to empathize with robots than with other humans just because these humans don’t share my neurotype? In that case, apparently Baron-Cohen has pseudoscientifically diagnosed all robots with Asperger’s. Otherwise, what sense would it make that I could empathize with a neurotypical robot but not a neurotypical human?

The one work of fiction I read last year, as I said, was fictionalized reality. It was Elizabeth’s Nickson’s novel The Monkey-Puzzle Tree, about the so-called Montreal Experiments, a series of horrific experiments in mind control carried out in a Montreal psychiatric hospital by well-known psychiatrist Ewen Cameron in the 1950s and early 1960s. In fact, when I wrote equally fictionalized stories in high school, they were not called fiction, but autobiographical, but maybe they had been considered fiction by people who didn’t know me. So, if you didn’t know that Nickson’s mother, like the protagonist’s, was a victim of the experiments, would the book be considered more fictional than now? Is it indicative of imagination that I was intrigued by the book, even though I don’t remember most of the fictional details and remember all of the details about the actual experiments? Probably, I get substracted some imagination points if you know that I would rather have read a purely non-fictional account, and didn’t like not being fully aware of which exact aspects are real and which are not. For example, in the novel, the protagonist’s mother goes to court to testify against the CIA, who were behind the experiments, and offered the breaking testimony that earned the victims much higher compensation; in reality, I don’t think Nickson’s mother testified before a court, and I find it annoying that I therefore am unable to tell how the victims got whatever compensation they did get. On the other hand, I am not at all interested in the non-fiction behind the previous work of fiction I read, the well-known Dutch novel Komt een vrouw bij de dokter, even though it is rather easy to look a lot of it up on the author’s site. The work was recently made into a movie, and I heard a lot of character discussion that I had entirely missed in the book. On the other hand, I still rely upon whatever I read in that book for anything I never wanted to know about imflammatory breast cancer, and have actually looked at the ACOR listserv database to see whether the E-mail list mentioned in the book exists (it does). Neither of these works are anything like sci-fi or historic fiction, but does it indicate fabulous imagination that I enjoyed them?

The museum vs. theater bit is equally strange. I am not sure how I answered the question when it popped up on the AQ-test (and which of the four times I took that test, by the way, since I took it online three times?). In real life, I like neither in general, since I pick both exhibits and theater shows individually and am very critical of both. However, when going back the last so many years to the outings I enjoyed, I have to say more are theater-based than museum. I am not sure though whether this indicates a preference, since most museums are inaccessible to the blind and the theater shows I tend to enjoy, are mostly particularly realistic. That doesn’t count though. Maybe if I enjoyed science fiction theater (if that exists at all), with as many spaceships and robots as fit on the stage, that would’ve made me unimaginative. Maybe then again I would’ve had some Aspie points substracted for not getting overloaded.

How is your interest in books, theaters or museums, indicative of imagination, anyway? If you still have some kind of fantasy world in adolescence or adulthood, you are considered childish or weird. If you have one in childhood, it is considered imaginative. Yet some Asperger’s girls (but Sarah points out correctly that Baron-Cohen doesn’t seem to care about girls) are quite known for this. I am no exception, notwithstanding my preference for non-fiction. Apparently, that makes me too imaginative to be an Aspie, right? Oh wait, that question wasn’t on the AQ-test so is apparently irrelevant. Imagination, after all, only counts insofar as Baron-Cohen can imagine it.

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Places I’ve Blogged at Before

Yesterday, I was reading Wikipedia’s list of social networking sites again. I am one of those people who has had an account with far more sites than she actually uses. The only reason I have never had a mySpace account, in fact, is the inaccessible CAPTCHA they at one point at least had. I recently deleted my Hyves account, and still have an active Facebook account that I however rarely use, because I don’t want to get the Google search results for my name up another several thousands just by participating there.

In any case, this got me thinking about all the places I’ve had an online journal, diary or blog at. Now that I notice, I think this makes me a personal information exhibitionist even if I rarely used my full name. Anyway, here is the list:

• Blogger: I was almost going to write that this is the only major blogging site I’ve never had an account with, until I realized that actually I did. I can’t remember when, but probably in like 2005 or 2006, I briefly tried my hand at setting up a blog there. I think what drove me away was a combination of the annoyingly uncustomizable look, the increased risk of Blogger sites for crashing my (and by my reasoning everyone else’s) browser, and, seemingly least but really most importantly, the fact that you can’t backdate your posts.
• Diaryland: Owned several accounts starting in late 2002. Created my main account in September of 2003 and had the precursor to this blog hosted there until February of 2007. The link to that account now automatically redirects here.
• Diary-X: Briefly kept a diary there in 2003, but I can’t remember what dissatisfaction with Diaryland got me to try this. Maybe it wasn’t so much an important dissatisfaction as it was my urge to try out every journaling site around.
• JournalSpace: Posted one entry in 2006. Again, there was something I didn’t like about Diaryland that prompted me to try this site, but its mandatory calendar (something I hate on many WordPress themes, too) and lack of customizability got me to quit.
• LiveJournal: Yes, of course I had an LJ. In fact, I had one public LJ and one “friends-only” LJ in 2005 and 2006. The former included mostly health whines and my latest, insomniacally-inspired nonsense (I guess I’m going to move over there again, given that I’ve been having really bad insomnia lately, LOL). The latter included long, psychological babble that was even worse than what made it onto my then Diaryland page (although “so” didn’t have six o’s there when suffixed by “bad”), and that I really should’ve kept offline. By the way, does anyone have a clue why LJ seems to be experiencing some kind of revival lately? And what the hell necessitated the creation of an LJ-look-alike that requires invitation (but so did LJ back in 2004 or so) by the name of DreamWidth?
• myDiary.nl: My first online diary, started in October of 2002. Kept regularly until March of 2004, when the Diaryland diary took ground, and taken offline in 2005.
• Teen Open Diary: the adolescent, free version of the Open Diary Project, which Wikipedia claims was the first social networking site. Kept a diary there briefly in 2002, mostly enjoying its post “circles” (ie. generic categories). Think it died cause of some 30-day inactivity suspension.
• Web-log.nl: Yes, I also own an account there, although I should really delete it given the number of spam E-mails I get from them. Made two failed attempts at creating political blogs there in 2004 and 2005.
• WordPress: Here. Started in February of 2007.

I did not list “diaries” that were really “personal” forum threads – oh, of course I did briefly own a Wrong Planet “blog” in 2007, I forgot -, or where your posts got mumbled together with everyone else’s (like The Diary Project). And it would not surprise me if there were some I still forgot.

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Navigating the Dutch Health System

A few days ago, a discussion was started at Mental Nurse about the subject of clothing rules in mental hospitals, with some general notes on the care situation in various hospitals in different countries thrown in (among them, comments from me about the Dutch situation). DeeDee Ramona wrote a Hitchhiker’s Guide to the Irish Health Service yesterday. I feel inspired, so I’m going to to a similar thing for the Dutch system. Of course, it is quite likely that most readers will never have anything to do with the Dutch healthcare system, but as you know I like writing about care bureaucracies. This post is rather extremely long though. I will first discuss the system of health insurance. Then, I will describe how you can access health services, after which I will focus specifically on prescription drugs and mental health. I will then make some brief comments about the private sector, and lastly discuss a few problems with the Dutch system.

Health Insurance

“Basic” health insurance is mandatory for all Dutch residents. You can choose your own health insurance from a number of private companies, and switch every year if you think you can get a better deal at another company. This is the reason everyone is bombarded with health insurance commercials throughout the months of November and December. Insurance companies can set their own premiums, but they cannot discriminate on the basis of age or pre-existing conditions for the “basic” package. You also cannot be turned down by any company for this package. I think the premium for basic health insurance averages around 100 euros a month for 2010. Low income people get paid about 60 euros a month in compensation from the Tax Service. You have a mandatory deductible of 165 euros, but people with chronic illness get I think it is 47 euro in compensation. However, the rules for qualifying for this compensation are rather nonsensical.

Basic insurace covers GP visits, specialist consultations, most prescription drugs, emergency room care, hospital stays, outpatient and inpatient mental health treatment, dental care for people under age 22, and maybe a few other services I don’t know of. Certain specialized therapies, like podiatry or certain types of diabetes care, but also very commonly used services like physical therapy, prescription glasses and birth control, are not covered. I realize as I learn more about systems in other countries that this isn’t as strange as it seems, but many of these services used to be covered under the public health insurance we had prior to 2006. You can get “supplementary” insurance for services not covered under the basic package, but insurance companies are allowed to discriminate people based on age, health or prior service use. I have always owned supplementary insurance, and the only reason I don’t drop it even though I find myself not being covered for the services I actually need, is that I may not be able to get back on the plan if I later find out that I need to. An insurance company can define its own supplementary plans, and most have several different plans with either more or different types of services. For example, my insurance company has * to **** supplementary insurance with increasing coverage, while some other companies have special plans for “families”, “seniors”, etc. Most companies offer separate dental care plans. The companies can set their own rates for their supplementary plans.

Accessing Health Services

If you need to access most health services, you need to have a referral from your GP. I don’t actually know whether it is required to register with a GP, but all people I’ve known of do. You are free to choose your own GP within certain geographical limits. You can theoretically switch GPs at any time, but most GPs will make a fuss if your reason for leaving their practice isn’t a move.

Once you have a referral, you can make an appoitnment at a public hospital or health provider your insurance company contracts with. It’s rather strange to me that insurance companies should contract with public health services, but I think the reason behind this is some hidden form of privatization at the health service level. Most insurance companies have contracted with most hospitals in the country, although I think some regionally-oriented companies may have contracted with more hospitals or providers in the areas most of their customers are from (although I never ran into a provider not contracted by my Rotterdam-focused insurance company, so I am not sure about this). In any case, as I said, specialist consultations at a contracted hospital, will be covered under basic insurance. I don’t think it is as commonground here as it is in many other countries for specialists to refer back to primary care as soon as they’ve set out a treatment plan. Specialists do also write their own prescriptions and send them directly to the pharmacy.

Prescription drugs

As I said, most prescription drugs are covered under basic insurance. If a prescritption is covered, you don’t have to pay anything. If it is not covered, you pay the full market price. For the sake of budget cuts, an increasing number of commonly-used prescription drugs are not covered, or only for certain specific indications. For example, benzodiazepines like Valium are only covered if you have a severe mental illness, an anxiety disorder for which you have tried at least two antidepressants, epilepsy, or are being terminally sedated. The formal aim was that prescriptions for sleep or stress would go down, but in reality they are still at the extremely high rate they’ve always been at; now it’s just that the patient pays for their own sleeping pills out of pocket.

Insurance companies can require pharmacies they contract with to dispense a preferred generic medication if it is available. Any other company’s generic or brand product with the same active ingredient will not be covered. They can change their preference for generics each year, so that if you want your drugs to be covered, you may need to switch to a different pill for the same active substance every year. You can imagine the problems this creates for some patients. Besides the fact that, for some patients, really the generic doesn’t work as well as the brand product, how about the confusion and suspicion it causes when you get a different pill every year but your doctor and pharmacist insist it’s still the same?

Mental Health

All inpatient and outpatient mental health services are covered under basic insurance (except for inpatient treatment after 365 days, which is covered under the national exceptional care bill). It didn’t use to be that way. Prior to 2008, mental health was all covered under the exceptional care bill. The fact that it was switched to health insurace, creates a few problems, the most troubling of which is the strict regulation according to diagnosis-treatment combinations, which make it mandatory that a person with a certain diagnosis be provided with a certain, standardized, insurance-covered treatment (FYI: the standards are nationwide, so thank goodness the insurance company doesn’t decide what type of therapy or drug you get). This is of course not how mental health works. No matter how much scientific validity and quality of care psychiatry likes to pretend with all its standardized treatment protocols, it has actually not been researched whether individualized treatment approaches may be more effective.

Each city or larger town probably has at least one mental health agency. They are usually a merger between a psychiatric instititution and a community mental health agency. We still have the large institutions in the countryside, but in most places, these only warehouse the longer-term crazies like me and the elderly. These mental institutions do operate acute wards, but recent legislation mandates that they merge with general hospital psychiatric units, so an increasing number of mental health agencies move their acute wards away from institution grounds onto general hospital premises. The only advantage I can think of at this point is that the acute patients are kept away from those creepy, chronic cases at the “real” nuthouse. Further, I think it only leaves people on the acute wards longer for lack of cooperation with the longer-term wards. Some people have excused the practice by some kind of mumbo-jumbo about psychiatric and somatic care being more easily integrated, but in reality the Dutch Federation of Hospital Psychiatry is complaining that the integrated mental and physical care they used to specialize in (hospital psychiatric units used to mostly treat people who suffered from both a mental and a physical illness), is suffering because of the forced merger with mental institutions.

Community mental health services are usually provided out of yet a different location, except if you are a long-term user of community services, in which case you may need to travel to the institution to see your community nurse or psychiatrist. Most “short-term” community treatment is provided by a nurse, psychologist or psychiatrist specifically assigned to treat people with your diagnosis, so-called “care programs”. Some agencies, like mine, are not that far yet and are still treating some patients in generic teams. I gather that my agency moved into “care programs” by 2010. I don’t know whether I was ever in a “care program”, so I can’t judge its advantages or disadvantages. My guess is that, while it is good to have a treatment provider who knows a lot about your condition, it can be problematic if you have more than one diagnosis. Of course, your treatment will be heavily regulated anyway thanks to your diagnosis-treatment combination.

Most mental health agencies have one or more specialist units or treatment programs. Examples of these could include day or inpatient treatment for eating disorders or personality disorders, dual diagnosis clinics (mental illness and substance abuse), or autism programs. If your own city or town doesn’t have the specialist treatment you need, you can be referred to another mental health agency in your province or sometimes even nationwide. Keep in mind that there are usually huge waiting lists. Even though, back in the early 2000s, Radboud University Medical Center, presumed to have one of only a few adult autism programs, had a waiting list of two years for that program, it is still as long now that pretty much every major city has an autism program. Blame the huge numbers of autistic adults like me who got diagnosed between then and now. In any case, any specialist treatment available that is deemed necessary, will be covered by insurance.

Psychotherapy, at either a community mental health agency or a private practice contracted by your insurance, will be covered if you have a referral. You used to be required to pay a copay of E15,- per visit, but this is no longer the case. Of course, psychotherapy is regulated by diagnosis-treatment combinations, so it isn’t like your therapist can bill insurance for psychoanalysis if you’ve been diagnosed with a specific phobia. There is also a maximum of 25 sessions of psychotherapy (per calendar year?), or 50 if you’ve been diagnosed with a personality disorder. I seem to understand that psychological counseling is also covered by insurance, but there is a copay of E10,- per session.

The Private Sector

To be honest, I have very little knowledge of how the private sector operates. We do have some private hospitals, clinics and mental health facilities, but I don’t think they’re all that widespread or commonly-used. Insurance companies can, however, contract with private health services just as they can with public health services, but they are not required, as far as I know, to pay the full price of care. Of course, even if they do cover part of the care of private clinics, it is only for the treatments they cover, so liposuction is not likely covered anywhere.

Problems With the Health System

One of the main controversies in the healthcare debate revolves around the question whether we need more privatization. Of course, the right-wing parties think we do and the left-wing parties think we don’t. As I possess left-wing prejudice, I have absolutely no understanding why the right believes increased privatization serves the quality of care.

Another major controversy, as I already pointed out, is the strict regulation of treatments and the dictatorship of insurance companies. As I said, treatment is regulated through diagnosis-treatment combinations. This goes for mental health, but also for somatic care, although in that sector it may be less problematic. After all, assuming you don’t get complications, it is quite possible to predict how much it will cost to surgically remove your inflamed appendix. Some quite hilarious (but not for the people involved) mistakes happen though. A few years ago I heard of an insurance company billed for “stroke treatment”, while the patient had already died before treatment could be initiated.

Further controversy arises over so-called “therapeutic preference”, by which insurance companies can dictate what method of treatment is used. This goes even further than the choice of geeric drugs. If a treatment is roughly the same (eg. involves the same substance being used), the insurance company can dictate that you for example get an injection rather than a pill. This is of course a rather serious infringement to the patient’s and doctor’s right to make medical decisions. I don’t know what really came of the idea for “therapeutic preference”, but I would not be surprised if it was pushed through without a lot of media attention after the initial consumer objections in like 2007.

A last controversy involves the use of electronic records. The law has, as far as I know, not yet been passed, but once it is, everyone’s medical information will be filed electronically. Every healthcare professional in the country can, if given consent from the patient, see the entire file. If you want to have certain parts of your file locked, you must request this at the healthcare provider creating these records. Fortunately, the government allows people to opt out of the entire system, which I enthusiastically did. If I have that hypothetical appendicitis, my psychiatric history is none of the surgeon’s business, after all.

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Why Won’t My Bank Install Talking ATMs?

I came across an ATM machine today. The machine, like most ATM machines in my city, had braille on its buttons. Each button was marked with a number from 1 to I don’t know how many; in fact, for some reason whoever put the braille on the ATM had been very careful to include the wholly unecessary number sign (does it matter after all whether the buttons are called 1, 2, 3 or a, b, c?). You may think I was thrilled, but to tell you the truth, I was not. The people who put up these braille marks on the machine, obviously didn’t speak to a representative of the blind, since if they did, they’d have known that these numbers don’t make sense even to some persons who read braille, and that 90% of blind people don’t read braille anyway. That figure is a problem of course, and I am all for braille literacy, but those people will not suddenly learn braille just because the banks don’t care to accommodate them.

I still can’t use an ATM machine fully independently. It’s not that I was never taught, but just after I memorized the sequence of buttons I had to press to get a certain amount of money on my own bank’s ATM, the configuration was changed. I think it has been the same for a few years now, so I could make an effort to memorize the new sequence (except that I now use the preset amount of money buttons and I was taught to always click the “Other amount” button and then type the amount of money I wanted); of course, the configutation will be changed again as soon as I do, but oh well. In fact, I think I have it pretty much memorized now. Still, I keep asking someone (usually my boyfriend, since I can’t locate the ATM machine independently anyway) to read the screen in case there is a (minor) bug, such as them not being able to print a note (which I don’t want anyway), which will mess up the sequence of buttons I’ll have to push. Besides, what if I accidentally request the wrong amount of money and don’t notice; if it is too little, that is not a big deal cause I could operate the machine again (provided it’s my own bank’s ATM), but what if it’s too much? If I try to access more money than is in my bank account, the ATM will give an error I can’t read, and if I request a large amount that happens to be in my bank account, the ATM machine will prompty provide it.

Then, of course, all banks are free to operate whatever configuration they want on their ATM machines, so if I memorized my own bank’s configuration, I could only take money out of my own bank’s ATM machines. Of course, forget about getting moeny out of a German ATM in case I’m in my boyfriend’s city.

The problrem is easy to solve: provide talking ATMs. That way, the problem of the 90% illiterate blind people who are absolutely not helped by braille on ATMs, will be solved. So will the problem of having to memorize which sequence of buttons to push, since I may have the memory capacity to do so, but many blind people do not. There will still be accessibility issues, of course, for example, for people who are deafblind. I cannot think at this point how these people could be accommodated, but I think it best that one get in touch with a representative of the deafblind for guidance on that. In any case, I am pretty sure that if whoever is in charge of ATM machines (my bank, I guess) had talked to a representative of the Dutch Association of the Blidn and Partially Sighted (NVBS), they’d have informed them about the need for talking ATMs; and maybe they’d have told them that, of course, braille marking doesn’t hurt, but it isn’t the fabulous way to accommodate the blind. Maybe if I really wanted to use an ATM machine independently, I could work myself around the accessibility issues, but as I said many blind people cannot. Are we supposed to rely on someone else (presuming we have a relative we trust) to help us access our own money for the sake of whatever keeps my bank from installing talking ATMs? Cause it isn’t that they don’t exist, or not in the Netherlands, or that it is difficult to install them. I was really inclined to believe that my bank was aiming to show that they were “doing something for the poor, blind people” to the majority of people, who don’t know that they are only helping at most 10% of those blind people.

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Labor Would Rather Collapse in 2011 Than 2010

So they didn’t let the government collapse. In yesterday’s Lower House debate, Balkenende refused to retract anything he’d said on Tuesday, but he did send the House an “additional” declaration, which did take the Davids report more or less seriously. Basically, it contradicts Balkenende’s “opinion” speech entirely. Nonetheless, both, completely contradictory responses were presumed to be on behalf of the entire government, including Labor. Wouter Bos was questioned in the Lower House as to what he’d thought of Balkenende’s Tuesday speech before having conferred with Balkenende, but he circumvened the matter. He went along with the “additional” nature of the speech, rather than it being a revision, so that he didn’t have to say Balkenende had flip flopped. In turn, he was of course flip flopping himself, but we know Bos for doing that. Incidentally, the debate lasted till 3:00 AM at night, and Bos found it funny that some MP referred to Tuesday’s speech as “yesterday”. Apparently, he had nothing more substantial to contribute than that.

Mariëtte Hamer, apparently so instructed by Bos, swallowed the response issued yesterday and apparently didn’t care anymore that Balkenende hadn’t retracted and Bos hadn’t distanced himself from the Tuesday speech, so she didn’t put out a motion against the government. Several other parties did put out a motion requiring Balkenende to retract the Tuesday speech; it will be voted on next week, but, given Labor’s current non-stance, it will most likely not get majority support. It is quite obvious that Labor is eager to trade its “breaking point” principles for an extra year of government participation, in which it will only shame itself more by having Bos issue huge budget cuts this September for the sake of the economy. The question isn’t if Labor will lose half of its electoral support, but when, after all.

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Dutch Iraq War Report Finally Out

I rarely write about politics these days. First of all, I don’t think my opinions make enough sense to want to broadcast them to whoever is reading my blog. Not that anything I wrote in 2002 or 2006 makes more sense, but I had more arrogance and an illusion of Dutch privilege back then. That is, the fact that most people who read my blog (except for those who knew me in real life, who had much rather write me about politics than about my daily blahs), didn’t know what’s going on in the Netherlands and wouldn’t otherwise care, so would just swallow whatever I said. Maybe I could be a good politics blogger if I cared to try, but quite honestly politics doesn’t interest me all that much anymore. This time, however, I do have to write, since the long-awaited Iraq report by former Supreme Court president Willibrod Davids is out, and our prime minister is hilariously trying to stumble around the harsh criticism he got from the man he himself picked out to investigate the issue for fear that a parliamentary commission would slice him to pieces.

As you know, every country’s government involved in the 2003 war on Iraq has admitted it was mistaken. We all know that Saddam Hussein no longer had weapons of mass destruction by the time the country was invaded, that secret services had information that cast doubt on this Bush rhetoric, and that quite frankly there was no international law backing up the countries attacking Iraq without a UN mandate. It has been suspected for a few years now that the Dutch parliament, like many others, wasn’t fully informed about the situation that led the government to decide to support the war. Now the report says the same. As I already said, Mr. Davids, who led the commission investigating our country’s “political” support for the war, was appointed by the prime minister himself. Before Davids went to work, prime minister Balkenende told everyone that, even though he wasn’t going to agree to a parliamentary investigation, we could all be reassured that Mr. Davids would be independent. Some media have questioned Davids’ independence, inferring a pro-Balkenende bias. Now that the report is out, Balkenende is touting triumph over the few conclusions Davids draws that are in his favor, and calls the main conclusions, that the parliament was misinformed and that there was no international law behind the war, just “opinions”. Now I remember why I once found politics humorous!

It gets even funnier, since Balkenende leads a government with his own christian party CDA, another, minor, christian party he just needed to get majority support in the Lower House, and the Labor Party. Now Labor has always opposed the war, and has called for a parliamentary investigation ever since, well, I can’t remember the exact time, but whenever every other country’s government was admitting they were wrong. Labor is known for flip flopping on pretty much every major “breaking point”, which suddenly turns out not to be a “breaking point” anymore as soon as Balkenende gives them some imaginary candy he is going to take away sometime later anyway. Iraq was their hugest so-called “breaking point”, and it turned out that they swallowed Davids instead of a parliamentary commission anyway. Now the funny part is that the response Balkenende gave, in which he claimed the unfavorable conclusions are just “opinions”, was supposed to be an official reaction. Are we supposed to conclude the entire government, including Labor, is on Balkenende’s side now? Labor Lower House spokeswoman Mariëtte Hamer stereotypically repeats herself saying that apparently we aren’t. But then again, is she the formal Labor leader now, or is it finance minister Wouter Bos, who has his hands full getting bankcrupt Iceland to pay several billions in evaporated bank savings, again?

In the morning news, Jan Pronk, a prominent Labor member and former minister, calls out the government’s collapse, because presumably Labor is going to pull the plug, either in government or in the Lower House. Yes, this time they are really, really serious. Oh, sure. I am a leftist, but I am also cynical, and I actually give it a fair chance that Bos will try to keep going for the sake of the economy. It won’t make much difference for Labor in the end, I bet.

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Americans Define Mental Illness All Over the World

Several bloggers have commented on Ethan Watters’ New York Times magazine article about the Americanization of mental illness. In this article, Watters discusses how presentations of mental illness that used to be specific to certain non-western cultures, are being rapidly overturned by classic presentations of DSM-IV psychiatric diagnoses. One such example is a specific form of anorexia nervosa, which used to be a rare mental illness in Hong Kong. Unlike western anorexics, sufferers of this condition were not overly focused on a self-perception of fatness or the pursuit of weight loss. Rather, their food refusal stemmed from a psychogenic form of abdominal discomfort. Even though this type of anorexia was still rare, “western” anorexia nervosa was unheard of in Hong Kong in the 1980s. This changed when, in 1994, an extremely underweight girl, who could’ve been diagnosed with “western” anorexia, collapsed on a main street and died. From then on, the incidence of anorexia, specifically of the type that made it into the DSM-IV, started to rise. This cannot be attributed to a sudden rise in biological predisposition to eating disorders among the Hong Kong population, since the timeframe would’ve been too short for this. A more logical explanation would be the fact that the American diagnostic standards of mental illness, and from there on the American conception of what is and is not a legitimate psychiatric disorder, are rapidly becoming the worldwide norm.

Is there any evidence that “culture-bound” syndromes, such as koro (fear that one’s penis will retract into one’s body and cause death) and amok (sudden, murderous rage followed by amnesia) are any less valid than the psychiatric diagnoses that have made it into the DSM? Or is it simply that the creators of the DSM are mostly white, American males with their own cultural bias? If that is – quite likely – an important factor in what is and is not seen as a psychiatric disorder, what implications does that have for the conception of presumed underlying mechanisms of mental illness? Is the solution to the problem of rare, “culture-bound” syndromes simply to wait until everyone has caught on with America’s norms of mental illness, so that we can go on researching what causes them without interference from koro and amok? Should an Asian psychiatrist diagnose the few koro and amok patients he might still encounter – because the general population is rapidly catching up on the American experience of mental illness – with whichever DSM diagnoses resemble these phenomena best, thereby imposing a foreign concept of mental illness onto these people? Or should they simply ignore these patients in favor of people with more westernized symptomatology? What about the consequences for these patients’ treatment in their communities, which may or may not have caught on with the Americanization of mental illness?

If we believe that mental illness is largely caused by underlying biopsychological factors, what with the clear discrepancy between current research into the underlying psychological concepts behind western anorexia and the form of anorexia that used to be present in Hong Kong? Currently, it is believed that anorexics overfocus on the ugly parts of their body. Could such a hypothesis be formulated about anorexicts whose food refusal is not caused by a willingness to become thin? For research purposes, it’s sad that Hong Kong anorexia vanished. It is possible that general biological mechanisms underlie mental illness, but that cultural factors determine how they’re expressed. This could lead to the same biological principle leading to quite different clinical presentations, but my inclination is that the reverse could happen just as easily. Is there any way to be sure that the non-American forms of spirit possession, are really schizophrenia, and would respond to the same treatments that western schizophrenia does? A specific study among these populations would have to be carried out to find this out – but then again, what if spirit possession is not perceived as a mental illness in certain cultures? Should we impose on these cultures that it is?

Incidentally, I am reminded of a much less extreme, but somewhat significant, effect of the exporting of American concepts of mental illness. In the Netherlands, the DSM is used as the classification system for mental illness, and American research on treatment for diagnoses classified within this system, is generally accepted at face value here. Bram Bakker raised an interesting concenr here in one of his columns I recently read: most clinical trials of psychiatric treatments are carried out on poor, black Americans who can’t afford health insurance. Is it fair to assume that the same treatment for, say, depression, that works for these people (presuming it really works and pharmaceutical companies haven’t obscured results that don’t suit them, of course), would work for an upper class, white person in the Netherlands? And remember, both the Netherlands and the U.S. are industrialized, western countries.

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