Socialist Party May No Longer Keep Its Members’ Salaries

Guusje Terhorst, the internal affairs minister, has a plan to end the option of having representatives’ salaries go through their parties before flowing into the members’ bank account. The reason is the fact that the Socialist Party requires its representatives to donate part or all of their salary (depending on whether they are MPs or local representatives) to the party. Oh well, precisely speaking, the party gets the earnings for its members and then pays the members whatever it sees feasible.

Agnes Kant, SP leader in the House of Representatives, asks whether Terhorst, who is a Labor Pary member, doesn’t have better things to do than “teasing the SP”. While I agree that there are probably higher priotities for an internal affairs minister, I don’t see how sending payments directly to the people who work for them, is “teasing the SP” (unless the idea of working for your money is “anti-Socialist”, of course). After all, Terhorst isn’t saying that MPs cannot donate their salaries to their parties. If they agree with the party head honchoes that this policy is fair, they can still send their money to the party as they please. The party can even kick out MPs who refuse to send their monthly donations – only then it would be more obvious to the general public that the party’s MPs buy their seats. Now that sounds a lot less socialist indeed, but is it any different? Ali Lazrak, a former MP, got already kicked out in I think 2004 for refusing to have the party take part of his salary. Of course, there were lots of SP members, including myself, who said it was okay to kick him out, because he knew beforehand that he’d have to accept a lower wage if he wanted to be on the Parliament for the SP. After all, this policy is outlined prominently in the flyer every new member gets. I didn’t think of it as buying a Parliament seat at the time, because I went along with the party rhetoric of accepting a modest wage rather than grabbing big money at the expense of ordinary people. Now of course this rhetoric would’ve made sense if the money the party earned from its members accepting lesser wages, actually went to the poor. In reality, it goes into expensive promotion campaigns. Now what does that do for the hypothetical laborer, nursing home patient or welfare mother the SP is supposed to serve? Okay, I have to say that the SP is probably the most involved in direct community action of all political parties, but a lot more could be done if it just didn’t value expensive self-promotion that much. I think if the party spent donations from its reps on actual community action, many reps would be eager to donate.

Of course, that is only as long as the representatives can actually afford to donate. You know, City Council membership takes up a lot of time, but SP members in this position are still supposed to donate their entire salary to the party. That way, how will the SP keep its promise, also prominent in its newbie flyer, that members will not be penalized financially as a result of their party service? I don’t assume that every local SP member who declines a position as a City Councillor because of the financial consequences, is a “big grabber”, but apparently, Agnes Kant does.

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Social Security Administration Required to Send Letters in Accessible Format

Joel of NTs Are Weird wrote about a federal court decision that mandates the Social Security Administration to send letters in accessible formats to people who are blind. I honestly wonder what the different associations of the blind think of this. After all, I think it is reasonable that a government agency, that sends out privacy-sensitive information, would send its letters in a format that the recipient can read independently. Is it reasonable to expect blind people to have readers read their SSA paperwork to them? I have my social worker do this, but this already sometimes leads to problems, for example when she quickly scans the letter and then tells me what she thinks it says I should do, rather than reading the letter aloud and only then, if I can’t interpret it independently, helping me make sense of it. Now my social worker knows about the benefit system, but what if someone unfamiliar with the system went on to “interpret” the letter for me rather than reading it? And that’s only when I assume that whoever I were to choose to read my mail, were trustworthy. Besides, even if a reader is trustworthy, they still could be using the information against you, for example, if they wanted to use it to “prove” that you can’t handle your own finances – and you don’t have to be a financial disaster to get that thrown at you.

Of course, people can read their letters independently, if they scan them using OCR software. This can be a lot of work if you’re not good with technology, but it can be done. However, it will likely lead to unnecessary delays, since blind people will have to scan and read all their mail before they can tell what is important: they can’t see that this is an urgent SSA letter and that is a letter addressed to the person who lived in the home before they moved here three years ago, but who never changed their address (a considerable portion of “my” mail!). I think it is really more efficient even for the SSA to convert letters into accessible formats with simple text-to-speech software and a braille printer, than to deal with the problems resulting from blind people either not noticing that they got an SSA letter, not reading it, reading it with a delay, or misinterpreting it because their reader made a mistake.

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Comments on the New Long-Term Care Legislation

I finally received a new issue of the small guide to Dutch social security, which I have been subscribed to for years. Normally, this guide appears twice every year, but I didn’t receive one either in late 2008 or early 2009. I assumed somehow the library for the blind had decided I didn’t need it anymore – which is technically true, since I needed only the 2007-1 issue for my studies at Saxion, but I never unsubscribed.

Anyway, I had been waiting to see what the guide says about the 2009 changes to our long-term care act, so I decided to read that chapter. For your information, the act was amended in 2009 to narrow the eligibility for “support”, one particular “function” (type of care) in the act. Support is described as “the activities, provided by an agency, to people with a condition, impairment or disability”. Pretty vague, huh? I permanently deleted the 2008-1 issue of the guide, so I can’t look up what it said there, but I seem to remember it was a much clearer description.

Oh wait, the description doesn’t end there. It goes on to describe not the type of care delivered, but the people eligible for it: “These people have moderate or severe impairments in social capacity, mobility, psychological functioning, memory and orientation, or display moderate or severe problem behavior.” It isn’t like you are eligible for support because you need it to function in your daily life – as is the case with all the other types of care -, but because you have a certain specific impairment, that supposedly means you need this support.

Oh, wait again, the description goes on: “These activities are aimed at enabling the recipients to remain functioning as independently as possible. That way, they can magage longer at home and admission to a residential setting or self-neglect will be prevented.” But isn’t support a standard part of your “care package” if you are in residential care? I checked all user guides for residential care – I fall under “mental health” -, and it is. Okay, I think I need to take it less literally and assume it is the need for more restrictive services that is hopefully being prevented. The guide adds for clarity’s sake, that the prevention of isolation and lack of social participation is explicitly *not* covered. So I guess we have to wait until a person who stops participating in community life and starts being isolated, spirals down into massive psychological meltdown before he’s eligible for help.

There is another problem with the so-called “prevention” in support: most people affected by the change of legislation, have received support for years. They all need to be re-assessed before the end of 2009 or before their current eligibility decision (“indication”) ends, whichever comes first. I enjoy the luxury of being “indicated” with the exact same care package I earned in 2007, in December of 2008, effective till December 22, 2009. The question is not whether I will lose services – the indication board’s strategy for implementing the amandment is to cut everyone’s funding and see who complains -, but how much.

What the people in charge of the amenbdment and its implementation fail to realize, of course, is that people who’ve had support for years, might actually function well because of this support. Therefore, an almost automatic cut in funding “because the recipient seems to function alright” may lead that person to fall apart again, because it was precisely the support they received that caused them to function alright (and “alright” is to be taken broadly, since no-one I know of actually functions normally even with support). People also may not get time to get used to the new situation. Those who retain their support but only get cut on hours, are not entitled to a transition period at all, regardless of when in 2009 their assessment was carried out. People who lose all of their support after their re-assessment, can transition for up to nine months, but only if they were re-assessed in the first three months of 2009. Those people being re-evaluated between October 1 and the end of the year, will only have transition time till the end of the year. Apparently, those who, like me, have their “indications” running till December, are supposed to have known about the new legislation (despite the fact that I at least never received a letter to that effect from any government agency), have guessed magically that they’d lose all their supports, and have arranged for volunteers or family members to take over what their support workers used to do, all before the official decision about their services is made. Note here, that we’re talking about vulnerable people. Most people receiving support are not actually capable of following what goes on in legislation. Hopefully, they all have good case managers who do follow legislation, guess correctly who of their clients will lose services, and make the transition out of services, if determined necessary by the Powers That Bureaucratize, go as smoothly as possible.

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Should Psychiatrists “Diagnose” Public Figures in the Media?

I read in a Dutch newspaper that Bram Bakker, M.D., a well-known psychiatrist, was criticized by the Dutch Association for Psychiatry for having commented on Dirk Scheringa, director of a recently collapsed bank, in a TV show. The association has a position against psychiatrists “diagnosing” individuals they haven’t assessed via the media. I can see the point, even though it won’t even get you officially warned by the medical malpractice board if you make an actual, clinical diagnosis: when political murderer Volkert van der G. complained about another psychiatrist having “diagnosed” him with Asperger’s via the media in 2003, he was dismissed precisely because he wasn’t in a patient-physician relationship with the man. Even so, of course the association can decide differently from the (not affiliated with any association, established by the government) board, and I think they have good reason to disagree. After all, it is quite likely that the board’s reason for dismissing Van der G. was not anything related to the content of the case at all, but the simple fact that their legal responsibility lies only with individual healthcare provision. A professional association, however, is concerned with the wider reputation of its membership. I can see how this could be harmed when psychiatrists make seemingly random diagnoses via the media. Professional associations have to set clear standards on what is and isn’t acceptable – and I think this needs more attention with the increasing popularity of social media. Now, psychiatrists could theoretically not just “diagnose” public figures, but anyone with an active account on a social media site. Twitagnosis? It already exists as an obviously (I might hope) unscientific tool in the form of TweetPsych, condemned by pretty much every major psychology blogger I know, but could it expand into actual doctors making semi-official “diagnoses” via social media?

But this is not what Dr. Bakker did. He did not actually “diagnose” Scheringa medically. Rather, he commented on his behavior, in not so nuanced terms: he said that Scheringa is a “bastard who presents himself as victim” and “he gives himself the role of an underdog or calimero”. These are opinions I think quite a few people hold – I, for one, do not -, and no-one would criticize them for saying so on TV. But then again, no-one would be asking them for their opinion, acknowledging that they’re a well-known psychiatrist. If Bakker were interviewed as a random passer-by in a street poll, I assume no professional organization would’ve complained. The problem is, I guess, that the association fears that Bakker’s opinion is taken as an expert judgment that is supposedly based on scientific knowledge of human behavior. This is, of course, not the case: Bakker may not be using pseudoscientific psychology dictionaries to place Scheringa’s behavior, like TweetPsych does with your tweets, but he isn’t using scientifically-sound methods, either. I can see that it harms the profession of psychiatry if people erroneously believe that he “must know”, since he’s a psychiatrist. Now people will get that belief anyway even if he speaks up at a party – and I might hope that isn’t the association’s business -, but at least he then wouldn’t be reinforcing it in mass media.

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The World of Employability vs. the World of Institutionalization

I talked with my sister on the phone for two hours a few days ago, and was frustrated when we hung up. The factual reason was that she kept making suggestions that were totally off-base about what might and might not work in improving my situation on the ward. She knows very little about autism, and what she knows, she got from chick mags. Trying to educate her is pretty difficult, since you don’t explain the nuances of autism symptoms and treatments (one topic we discussed was whether meds would help me re the meltdowns) in a phone conversation. Mind you, she was well-meaning, and the fact that we conversed for two hours, indicates that we get along quite well. I don’t intend this post as a sister-bashing rant, anyway.

What I do want to write about, is the totally different expeirences that I have from my sister, but also my boyfriend and everyone else outside of the institution I know. Most people I know offline outside of the hospital, are of college age like me. Everyone who falls within that age group, actually attends college. Now I attend some Open University courses – I just signed up to take a neuropsychology exam -, but it is not with the purpose anyone I know has with being in college, ie. pursuing a career.

My sister talks about her difficulties at university quite frequently. She is a biology major, but not sure if she will continue in this field, since she is very behind in her studies. She talks about possibly switching to history. She asks me about college programs that suit her interest, where she would know what she’ll become, because these might be more motivating to her, but then she tells me that she can’t go to a lower level college because that wouldn’t be “normal” for her. She asks me whether she can ever get into research if she by now is so behind – even if she eventually catches up, people will wonder why she took three years to earn her foundation (first-year certificate). She is concerned that future employers won’t hire her because she never had a part-time job while in college. I tell her that volunteering as treasurer for the Dutch Youth Association for the Study of Nature (plus a dozen other positions at the local or work group level) is relevant experience, but really, I have no clue. Maybe my well-meaning advice sounds as off-base to her as hers is to me, but at least she is the one starting the conversation.

I have the same experiences with other college-attending people I know, as well as on forums like Wrong Planet: I still post on the school and college board sometimes, and even occasionally on the work and finding a job board, but I realize that my experiences are likely irrelevant. Not only did they take place several years ago, but I also can’t be sure whether anything I share may just be related to something I don’t have in common with the person I’m conversing with.

For example, my sister worries about never getting a job and having to be financially dependent on her boyfriend when they’ll live together someday. I won’t likely get into any financial trouble, whether I ever get a job or not: I’m on disability and, unless the law changes again (but the change scheduled for 2010, will not apply to current disability recipients unless they themsleves choose so – the new law is marketed as giving people better opportunities for work), it’s unlikely that I will ever be forced to get a job if my current situation doesn’t improve significantly. On the other hand, I worry sometimes that my current situation will spiral down into a life of total unproductivity, not even solely with regard to paid employment, but also with regard to education and community service. There is no doubt that environmental groups will want my sister as a volunteer, even if she weren’t qualified for a paid job. Of course, I am not saying that the worry about getting a paid job, isn’t important – it is a reality that, without a paid job, my college-age relatives will be financially dependent on others -, but it’s just, well, different.

Another thing is, all my college-age relatives are busy planning out the rest of their lives. They worry that they, in their first year of college, don’t know what they want to do for a profession. I never thought about this even when I was in college: all I thought abotu, was how to get myself through the first year at Saxion, and through the first six teeks at Radboud. At this point, employment isn’t on my mind really, and actually, neither is college: when people ask me where I want to be in so many years, I usually reply: “Out of the institution.” I do still have some college dreams, but they are so vague that they never make it into anything remotely like a future plan.

Now I do still discuss college and employment with people. It’s a lot more interesting than my day activities. When someone asks whether I have a day program, I obligatorily sum up my weekly activities: movement therapy, domestic meeting and singing on Monday, a meeting with the social worker and yoga on Tuesday, movement therapy and orientation & mobility on Wednesday, nothing on Thursday or Friday (but I often go places with my boyfriend on Fridays), and mostly a biweekly meeting with the psychologist not on a fixed time. You ask whether I see any results or what goal these treatments have? No clue, and I’d have to look in my treatment plan for the official gibberish. If you can’t discuss something “normal” about my life like the city I last visited with my boyfriend (the topic I usually start phone conversations off with), discuss your college or employment issues, please. The fact that you are in college, doesn’t alienate me by definition – unless you tell me that my comments are clueless, theoretical and outdated, but no-one tells me so. The fact that I’m in an institution, does.

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Case Report: Carob-Induced Autistic Behavior in a Gull

Background

Autism is a severe developmental disorder that, according to a recent CDC estimate, affects 1 in every 91 children in the United States. It is characterized by impaired or absent social interaction, poor communication, and single-minded fixation on non-functional routines, behaviors or interests. Genetic factors are thought to play a significant role in the causation of autism. Despite this, there is a large community of parents of autistic children and alternative medicine “doctors”, who keep asserting that environmental factors cause children’s autism. These factors range from mecury compounds in vaccines to viruses and from pesticides to gluten in food. When n ot enough data to support an assertion can be found in humans, animal studies make for an interesting intermediate. Here, we present a case study of a gull who became autistic after having been fed carob, a so-called “non-toxic” substitute for chocolate.

Method

We bought some carob for human consumption, but decided it tastes like, well, carob, and makes for a good substitute for chocolate for Tom Lehrer’s sergeant, whose taste buds have been shot off in the war anyway. Then, we decided to feed the remainder of our carob to a gull in a city park in Nijmegen, Netherlands. The effect of this substance on the gull’s behavior, will be discussed below.

Results

After being fed some carob, the gull withdrew from social interaction with other gulls. When a gull tried to come near, he reacted with purposeless, stereotyped screams and aggression. He also fixated exclusively on the attainment of more carob. This behavior did not disappear after we stopped feeding.

Conclusion

A gull started displaying autistic-like behaviors after being exposed to carob. Further research is needed to demonstrate or disprove that this finding can be replicated in other animals and possibly humans.

This study was submitted for publication in the New Journal of Useless and Unscientific Research in Medicine. I guess that’s where most alternative “studies” on autism belong, too. Maybe we can collectively persuade the editors on doing a special issue.

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D Is for Dependence

Cellar Door of “Not Another Nursing Student Blog…” has been writing an alphabet of secure psychiatric services, which is mostly applicable to any mental health unit, lately. She’s by now arrived ad D, for diagnosis, danger, drugs and (hopefully, eventually) discharge. However, last night I realized that there is one D that pretty much describes the patient’s engagement with staff, whether the people who tout “rehabilitative” treatment like it or not: dependence.

For clarity’s sake, I am not referring to anything within the patient’s mental or physical condition that causes them to need help with basic self-care, to a feeling of insecurity when staff are not nearby (you know, another patient might actually just kick off that very moment!), or to overreliance on the day-to-day institution structure (so what have you got besides your daily 10:30 coffee, if activities are scarce and you still get kicked out of bed at 8:30 to “stay in the habit”?). These all fall under what nurses mean when they refer to their patients as “institutionalized”. What I actually want to talk about, is the dependence that comes when staff decide, openly or covertly, what’s best for you. And sometimes, practices aimed at preventing “institutionalization” actually fall under this heading, too.

I remember in the early months of my hospitalization often arguing with one particular nurse over whether I should go to recreational therapy. He thought I should, in order to distract myself from bad, meltdown-provoking thoughts. He had a point there, but he didn’t know that I spent most of the time at rec therapy just sitting around doing nothing, and this gave me at least as much opportunity to go round in circles of negativity as just staying on the ward would have. The same nurse proposed almost every week during domestic meeting, that the ward enforce that everyone starts dinner together with a moment of silence and waits for everyone else to be finished before leaving. This was not a matter of cutlery being counted – my ward was not as secure as Cellar Door’s -, but rather, that the apparently “normal” standard of conviviality had to be enforced. The nurse’s argument, after all, always went: “You would do this at home, too.” Now I had practical objections to this rule (that never got enforced during the time I was on that ward): there were always quite a few very unquiet patients, who would not be able to wait for everyone else and who would likely be creating trouble over dinner. I’d rather have the ability to leave before someone starts acting up. Besides, this isn’t home: at home, I for one live alone so don’t have to wait for anyone, but supposing I did, it would not be for sixteen people. “Real-life” scenarios just don’t get carried over to the institution just because the staff proclaim to prevent “institutionalization”.

Of course, these are very minor things, and when I started this post, these were not really the things I wanted to talk about. Rather, I wanted to point out that, just because staff have supposedly embraced “rehabilitation” – which, according to the former student nurse here, doesn’t mean enforcing “normalcy”, but taking the patient’s wishes and goals as a starting point for treatment -, doesn’t mean the staff no longer dictate patients’ lives. Quite strongly so, in fact.

First of all, if you are “dangerous” – ie. if the staff find you annoying (I am the only one who uses the word “danger” in reference to my current time-out threat system, purposefully taking the law literally as it is meant) -, patient rights go out the window right away. It doesn’t matter that you’ve always been informally committed and therefore have to give informed consent for your treatment: “There is no alternative.” So, there. Now of course, the very fact that I’ve been a voluntary patient for two years – and only got threatened with a section once -, may be an explanation for why I let this happen to me: I dread being kicked back to my home, especially with no time to arrange for home support. I’m not sure if the staff instilled this dread in me, since I already told them right away two years ago, that going back into my own home wasn’t likely going to work out. In this sense, maybe I am weaker than the average psych survivor whose writing I read online – or maybe they aren’t involved in institution dynamics when they write anymore.

Secondly, even if you are not “dangerous”, staff might use your weaknesses against you in forcing you to comply. The threat of forced discharge, with very little prep time, has been used to me by my former ward’s social worker a few times, if she wanted me to sign some application form. As I wrote above, maybe it’s just me, but I always at least partly complied if she used such a threat. This social worker was also consistently referred to by everyone as “advocating for my interest”, and it was hard to deny this without offending her, since she did go to great lengths to advocate for me in some areas. Besides, she was the only one who could get me in touch with possible community care agencies, so if I wanted to leave, I needed her anyway. You know, even with all the relevant legal knowledge – I know more about mental health law than quite a few staff -, it is hard to defy someone whom you are dependent on in so many ways. She only used the suggestion (not a threat, just a suggestion in my file somewhere that I wouldn’t have known about if someone else hadn’t read it to me on my explicit request) of limited guardianship once, and I knew full well that this would not have stood any ground had it been taken to a judge. Nonetheless, I was scared.

Lastly, of course, there is no need to use the law against you at all. I can be intimidated by an authoritiarian voice, that says: “No arguing. It’s just a statement. I have decided.” Legally speaking, the doctor hadn’t – the matter concerned my second time-out plan, which I had to give consent for -, but by the time I’d processed what she’d said, she was gone (another tactic: scheduling appointments at 4:45, so that you will already be getting ready to leave). The on-duty staff made it worse, when the nurse who’d attended the discussion with me, refused to talk about it with me because she wasn’t the nurse I’d been assigned to – so why did she attend an important discussion with my doctor in that case? Another “no arguing” and the suggestion that I just might end up in time-out if I continued to act up, and I was silenced. Think this wouldn’t happen now? Think again: I so vehemently told the staff that I’d keep asking for a proper explanation of my third time-out plan until I got one, had been sectioned, had been discharged, or the plan had been abandoned. One nurse told me she’d ask my psychologist about it, but she probably didn’t. Then again, I’d rather keep the relative peace that I’ve been in for the past week, then get another blunt non-explanation like “There is no alternative”. Maybe I get off the plan sooner this way. Probably not. Really, I hate myself for being dependent.

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Reasons Patients Act Up (Other Than Just Being Ill)

A few days ago, Cellar Door of “Not Another Nursing Student Blog…”
wrote about some personal frustrations, thereby reminding me that mental nurses feel bad, too. Of course, staff have to keep a professional distance, and therefore are unlikely to discuss their own personal problems with their patients. Doing so could leave a burden on the patients. Patients, also, might use private information against staff. Besides, by being on too much a convivial basis with patients, some staff may run the risk of taking aggression too personally. Therefore, I can see why some nurses would shy away from sharing anything about themselves with their patients.

However, this is not the reason why I have trouble remembering that staff can have a hard time, too. The main reason is that some nurses have a habit of treating a patient’s every undesirable behavior as a symptom of their mental illness. I won’t go into the fact that just because something is due to someone’s illness, doesn’t mean they can push the “normal” button if they want. What I want to point out in this post, is that there are many other reasons a patient might act up. Patients are human, too, after all. By the way, this pos tis not directed towards Cellar Door or any specific mental nurse.

• Just having a bad day: oh, duh! Everyone has their good days and their bad days, and something as simple as you having missed your morning coffee, might make the difference. There is no reason why patients, even those whose illness is well under control, should always be happy (but not too happy, of course!) and never have an off day.
• Significant stressors: would you feel alright if you’d just heard that a loved one is in the hospital, if you’d just received a huge tax bill, or if a friend just told you she doesn’t want to be friends anymore? All the things that would stress you out, will stress your patients out, too, and some of these things happen more frequently to mental patients (financiaal problems, friends leaving them, etc.).
• Frustration about genuine problems related to their hospitalization or treatment: how would you feel if you had to be on a locked, short-term ward for over a year and still had no idea when you’d be moving? Or if an unclear time-out program were imposed on you (while you’re a voluntary patient, but informed consent is a privilege)? I had one of my most frustrating staff interactions in late 2008, when a nurse commented about my “depression” (I have never been clinically depressed), when I had a huge meltdown over having been on the locked ward for so long with virtually no perspective (of course my negativity also concerned other topics, but this doesn’t mean it wasn’t influenced by the situation). OMG, where’s your empathy?! It may be that a patient is in the hospital for a good reason, or that their seclusion or restraint plans are (supposed to be) necessary, but that doesn’t mean it isn’t frustrating.
• Problems with other patients: of course, everyone is ill, so chances are patients will behave in ways that scare other patients. Of course it would be easiest if eveyrone else could just ignore a patient who is acting up, but this just isn’t realistic. Staff have been trained in psychiatry. Patients have not, and, besides, we have to be together 24/7.
• Physical illness: if you are down with the flu, you likely won’t be as cheerful as you would otherwise be. The only difference between you and your patients is that you will stay home and only bug your family, while your patients will stay in the hospital and bug you.
• Hormones: you know, good, old PMS. The idea that it is an illness is populated by Big Pharma and the alternative medicine industry, but premenstrual symptoms can certainly be distressing.

There are likely many other reasons why you would feel bad, and all these could be applicable to your patients, too. Of course, if someone is throwing furniture or attacking staff, it doesn’t matter what the reason is – safety first. However, I’ve often gotten responses from nurses that dismissed genuine reasons for distress, when I wasn’t in a meltdown, let alone violent, but merely irritable. You get irritable sometimes, too. I don’t believe any nurse who says they don’t.

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Too Low-Functioning for Mental Health

I am reminded by a post over at Spliit, that somehow links higher functioning in daily life to invisibility to the mental health system, to write about the functioning that is required to access healthcare in the first place. Of course, you may say that my own experiences are irrelevant to borderlines (I couldn’t access community mental health at first because I couldn’t communicate my needs, which is probably an autism thing), but I have seen some ways in which the healthcare system has set barriers for some people with BPD who do not have the skills to function in daily life, too. Here are just a few reasons why the mental health system may actually be inaccessible to people who have more difficulty coping in daily life. They are not meant to be exclusive to borderlines; even though I derived some points from the Spliit post, people with other conditions may face the exdact same problems. (By the way, I use the terms “high-functioning” and “low-functioning”, but I am not implying that there is a hard, black-and-white line between these or that people cannot function at different levels in different aspects of daily life.)

• People who are severely ill, may know that something is wrong, but not know what, or their illness may prevent them from knowing they have a problem. Randi Kreger, quoted in the post, connects denial to higher functioning, but I’ve also met people on my former ward whose denial (and blaming of family members or other relatives) was related to very low functioning in daily life.
• Community mental health providers usually expect clients to be able to ask for help in the specific areas they have trouble with. For this, the person has to be aware what their main complaints are and be able to communicate this to a mental health professional. Even acute inpatient placements may expect a patient to know what they need from the staff if they are not to be sent off as soon as their medical needs (eg. damage from self-harm) have been dealt with.
• Quite a large number of mental healthcare providers refuse to treat patients with severe acting out behaviors, such as aggression. This goes for group therapies like DBT (at least, what I’ve heard from the bordelrines I know), but even for some individual treatments.
• People who are unable to see a crisis coming, may not seek treatment except when they have already harmed themselves or others. Because at this point there is little use in therapy, people may be unable to access preventive therapies. But even if they are, they may be too unstable to be able to follow the therapy program, and/or the therapist may give up on them because they don’t make enough progress.
• Certain comorbid disorders, such as substance abuse, cause therapists not to want to treat people. It is a good thing that the number of dual diagnosis clinics is growing in the Netherlands, but there are still long waiting lists and these wards may require a certain level of mental stability.
• People who mostly act in may remain invisible to mental health providers, because they are ashamed of their self-harm, don’t know that it isn’t “just normal for someone my age” (pretty much every young female self-harms if we have to believe the media), or don’t know how to discuss this issue with a primary care provider, who must (in the Netherlands) write a referral to mental health. In this respect, people who mostly act out, may be more visible to mental health providers, because this behavior affects others (but of course in this sense the issue of shame applies, too).

These are just the things I can think of now. There are probably other barriers. Of course, if a person functions at an extremely low level and is an immediate danger to themselves or others, they may end up in the ER, but ending up in the ER is no guarantee that you will be able to access mental healthcare.

Of course, I am not saying that there are no barriers to mental health services for those who function better in daily life. As the post says, people who function relatively well at work or in social life, may have the ability to deny or mask their illness and avoid treatment. Since mental health providers don’t usually step in without the patient’s own explicit request unless the patient is a serious threat to themselves or others, family members cannot easily steer these people towards services. And even if they can, mental health professionals might turn the patients down because they make the professional believe that nothing is wrong. These are major concerns for families, too, so I’m not meaning to minimalize these. What I meant to write about, is that sometimes you may be too low-functioning to be able to access mental health.

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World Mental Health Day and the “Just Like You” Divide

Today is World Mental Health Day. Now I happen to have a problem with any type of “special, vulnerable population day”, because awareness that this population exists should not be concentrated on just one day of the year. I see it each year on October 15, International White Cane Safety Day: all these politicians and celebrities who put on a sleepshade and walk across a street with their white canes. Every newspaper has its share of “awareness” stories about how unsafe some parts of traffic are for the blind. Does anything change? Of course not. And I don’t see any reason to assume this is different for World Mental Health Day: people might have heard of it – I think mos thaven’t, since I didn’t know it existed until a few days ago -, and those who have might think about mental illness stigma for a few seconds (or they may just wonder to themselves when it is “World Normalcy Awareness Day”), but in the long run no-one is going to change their attitudes any.

But that is not the point I want to write about now. I came across an article by D.J. Jaffe, a self-acclaimed advocate for the mentally ill, that states that there is nothing to celebrate about the U.S. Mental Illness Awareness Week this week. In it, Jaffe states that there is no reason to fihgt stigma that, according to him, doesn’t exist (I don’t know where he gets that from, but well). I agree that all the “we’re just like you” nonsense is irritating, but that is about as far as my agreement with the article goes. Jaffe, namely, uses the “just like you” stupidity in the exact way that makes it irritating to me: it reinforces a nonexistent divide between those that are “well” (or, in Jaffe’s words, “worried-well”) and those that are “ill” (or “severely ill”).

Again, before I get an army of mental health advocates who tell me that someone who has been diagnosed with mild depression or anxiety and can be treated in the community with a short course of CBT or some Prozac, is different from someone with chronic, treatment-resistant schizophrenia who is at risk of harming himself or others on a daily basis because his psychotic symptoms cannot be fully controlled: I never said there was no difference. All I am saying is that the line cannot actually be drawn anywhere that wouldn’t be arbitrary. That’s just not how mental illness works: mental illness affects everyone differently, and impairs some in a more severe way than others in one or more domains, and some people respond better to certain treatments than others.

I also maintain that community changes would help the group considered too severe for anti-stigma campaigns, too, if they were just based on the right logic. Societal change should not be based on the premise that “those people are jsut like us”, but on the premise that everyone should have the same basic rights. Of course, I realize that this goal cannot be attained overnight, but it would change a lot if anti-stigma people as well as Jaffe’s crowd of “advocates” for the mentally ill would just stop dividing the world in those good enough for equal rights and those so bad they can be discriminated against in the name of advocacy.

As a side note, I am not opposed to (research into) treatments for what is knwon as severe mental illness. I can see the reason why most agencies won’t fund it – it is far more cost effective to fund research that is likely to harvest success -, but I don’t share this opinion. Before anyone starts telling me that I think someone with chronic, currently unmanageable schizophrenia should just kill himself because his voices tell him to, I’m not saying anything like that. I say that public awareness and community change (and a shift of attitude among professionals!), if built upon the right premises, benefits everyone, and that there is no reason to deny those arbitrarily decided to be “severely mentally ill” inclusion and equality just because they cannot claim to be “just like you”.

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