Shock: Infant Euthanasia Has Been Legal Here for Two Years

I’m shocked. I live in the Netherlands, I am pro-life, and yet I was not aware of this until now: infant euthanasia was legalized here in 2006! It doesn’t make a real difference in a sense, in that the so-called Groningen protocol – by which children under age twelve years with severe disabilities can be euthanaized with parental consent -, had already been officially tolerated (a procedure by which the doctor’s murder charges will be dropped by the prosecutor) since 2004. In fact, the way I found out about the legality, is through a report that claims no infants have been euthanized in 2007 – which obviously isn’t saying that it really doesn’t happen, cause passive euthanasia is not counted.

However, what strikes me is that in other cases of crimes that are officially tolerated, like selling soft drugs at so-called “coffee shops”, there’s lots of media coverage whenever a politician calls for legalization. In fact, soft drug sales have been officially tolerated for thirty years, and politicians are still falling over each other in the debate over whether the practice should be legalized. Now I happen to support the legalization of soft drugs, so it feels nonsensical to me that politicians are still fighting over it after this long and the media is grossly overemphasizing the subject, but it really points out how careless our people are about disabled life, if infant euthanasia can be legalized with hardly any media coverage or political outcry two years after its officially being tolerated. Maybe the issue would’ve gotten more attention if the legalization attempt had been done in 2007, because the Christian Union, one of only two pro-life parties in the Netherlands, came onto the government then. It’s still a very small party, so unless the party had made it a “breaking point” during government agreement negotiations, the practice would still have been legalized. But then still, how can it be that the Dutch people are not notified through the mainstream media that euthanasia on children is about to be legalized. We are, unfortunately, not a pro-life country at all, so maybe the media don’t care about the ten or so children each year of whose euthanasia authorities are notified.

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Disability Is Different, Right? Ableism vs. Other Forms of Discrimination

Last week, I heard that an agency that provides supported living services to people with mental health problems including autism in my area, turned me down because of my blindness. They turned me down without ever having seen me or spoken with me, and presumably without knowing anything about blindness, its implications or the services available to the blind through the agency for the visually impaired. I feel very desperate, because it means that there is really no way I can stay in this area, where my boyfriend lives. It makes me feel kind of depressed, but also very angry. If the agency’s placement guru was told that the Nijmegen housing association cannot house them because they cannot deal with their religion, but don’t get mad sicne there’s a housing association in a far-away city that specializes in housing people of their religion and that doesn’t even object to theit skin color, oh isn’t that fabulous, what do you think they’d do? They’d take the housing assoc to court for discrimination. But I have to hope that through a little pushing from my social worker, they will be willing to at least speak to me (unlikely, since it’s the third time they bluntly turned me down). Disability, after all, is different. Why?

In employment cases and the like, I can see the point, if the employer is responsible for accommodations. In the Netherlands, they aren’t, since the agency responsible for disability benefits will pay for workplace accommodations and job coaching if needed, and the job coach will come out from a disability service agency. Employers will even be compensated for sick leave through a no-risk policy, by which they will not have to pay the employee’s salary if they’re sick. But taking the U.S. system, where an employer is responsible for reasonable accommodations etc., it is understandable that disability is different from, say, skin color or religion. After all, one’s skin color does not cause one to need accommodaitons.

But I am not saying that the mental health support agency should be giving me accommodations that they don’t have the resources to provide me with. All services that I need because of my blindness – orientation and mobility instruction, mostly -, will come from the agency for the visually impaired, and I will be creating my own accommodations – that won’t go farther than a braille marking on the laundry machine. Maybe they think they need to have a specially adapted home for me, but obviously they don’t. Furthermore, they won’t be at a financial disadvantage if they take me – if one thing, they will get extra funding for me because of my blindness, no idea why. The one thing they could see as problematic, is that maybe my prospective housemates wouldn’t like to have a blind woman in their home. But then again, will they get to choose whether a person of another religion can be in their home? Unless the agency has a specific religious orientation, exempting them from anti-discrimination legislation, which this agency doesn’t, obviously they won’t.

Disability discrimination is often thought of as different from other forms of discrimination. I often agreed, if non-discrimination requires the employer, housing association or service provider to make special accommodations that they won’t be making for the other people they serve and which do not obviously fall under the umbrella of “normal” individual differences. Still, of course, this means that disability is somehow not “normal”, and I disagree to that very point already. But even if you happen to believe that providing disability accommodations is a favor rather than a right, it’s still discrimination if a person with a disability is denied access when the service agency or employer doesn’t understand the person’s needs. The agency didn’t even care to ask me whether I need an adapted home or lots of care that they cannot provide within their living accommodations. If they had asked, they would’ve known that I don’t need this. Rather, they chose to turn me down based on ignorance and assumptions about the implications of a disability. What is different about this from discrimination on the basis of assumptions and ignorance about the implications of religion or skin color?

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Sense and Nonsense of Treatment and Educational Plans

Recently, there’s a lot of discussion about Individualized Educational Plans (IEPs) on one of the mailing lists I belong to. This discussion used to make me jealous, because, in the Netherlands, educational programming for students with disabilities may formally be based on a plan, but the plan is rarely followed and often, the student or parent isn’t even being informed. At least, when I was in high school and attending meetings with my visiting teacher of the visually impaired, these meetings were so informal that there really was no way of knowing whether what had been agreed upon, would be followed through on. Actually, in 2005, I received a copy of a document my visiting teacher had sent to the rehab center, and was surprised to find the strangest goals in it, that had neither been addressed nor worked on. I used to think that the reason was that most were social skills goals, and my teachers had long given up on that, but now I know better. Plans – whether they are school-related intervention plans, rehabilitation plans or treatment plans in mental health – are meant to be useless formalities that only serve to provide written documentation of what the professionals are already doing anyway. If any change of goals or strategies is suggested during a formal meeting, be guaranteed that it will not be followed – at least not if you happen to agree with the change. The nurses in the psychiatric hospital try to use the fact that I’ve been here for a year as an excuse, claiming that after this long, everything should be clear or will never become clear. Well, I tell you, it’s been this way ever since I came here last year: almost anytime anyone suggested that the current intervention might not be working or might not be the most desirable, this was put nicely into the treatment plan but forgotten the minute after the meeting had been closed. This happened to the suggestion that, rather than just putting me into time-out or threatening time-out in order to shut me up, we try to figure out why I had meltdowns. This suggestion was done on the January 24 treatment plan, so nowhere near the time when any change would mean nothing would ever become clear anymore. Not only was the time-out threat system continued without any change in intervention, and only terminated because I’d shut up for enough time, but it was the first thing my doctor came up with the day after I had a bad enough meltdown again. The only way to shove the ineffectiveness of the time-out stupidity into the people’s face, was by pointing out it was a major reason for the resocialization ward to turn me down. Now any meltdown is supposedly “normal” or “to be expected given circumstances”, regardless of the fact that I exhibit the exact same behavior, in roughly the same context, that earned me the time-out policy last June.

It’s not the hospital’s fault. Blindness rehab never gave me a plan, either, and skipped the ninth-week evaluation. They introduced formal rehabilitation plans only a few weeks after I’d started, so I never benefited from them, but I guess now that it wouldn’t have made a difference anyway. The training home put together three goal-achievement plans in eighteen months, while you should be getting one every three months, and only revised my care plan when a new request for funding was due.

<PIt isn’t saying that no changes in intervention occur. In fact, they always happen inbetween planned meetings, so that you have no time to go over the implications and discuss them reasonably. Both of my time-out policies were introduced inbetween treatment plan discussions – the second only a week after my treatment plan meeting -, and so was the vast majority of my follow-up placement decisions. No wonder that it was such an unclear mess: the open admission ward vs. resocializatioon ward battle was finally resolved when we did discuss it at a formal treatment plan meeting. But don’t ever think that you, as the client or patient, can change the way you’re being dealt with inbetween treatment plans. When I withdrew my consent for the time-out policy in the middle of August, anticipating being refused by reso ward if the policy continued, I was told to wait till my treatment plan and was then threatened with forced discharge. Treatment or care plans are important if the staff need them to be – ie. if you want to make changes that they disagree with -, but are just formalities if it suits them better – ie. if they don’t want to answer your critical questions. Monday’s my next one, and one nurse has already sort of vowed to be personally responsible for making it a totally useless formality.

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Cynical List of Things I Learned in a Year in the Psychiatric Hospital

Today is my hospitalization anniversary. Oh well, it could be yesterday, since I had my crisis on November 2, but hours on the police station waiting for the community physician and then the psychiatric crisis service people to see me and then more hours waiting for transportation, delayed my hospitalization to around 2:30 AM November 3. So, what have I learned in this year? Depending on my mood, I would word them all differently, but I’m mostly somewhat bitter these days.

1. Train station employees are not as judgmental as you might think: after I’ve had many meltdowns while there, they still let me go onto the train now that I don’t have meltdowns.
2. If life sucks for you, don’t say it out loud, because it can always suck more.
3. Time spent in psychiatric hospitals is not life experience deductable, even though everyone else thinks it is.
4. It is acceptable to tell a 22-year-old person that whatever they don’t like, is “temporary”, despite the fact that one’s entire life is temporary.
5. A patient’s level of supposed stability is determined more by what suits the doctor’s plans best than by their actual mental state.
6. It is useless to believe in any plans for your treatment or placement before they’ve been executed.
7. It doesn’t matter whether an intervention makes logical sense or whether it’s a significant threat to your freedom, if it supposedly “works” in shutting you up.
8. Threatening time-out or giving sedative medication always “works”, no matter the actual outcome.
9. Social workers need to base their respectability on their age.
10. Doctors need to base their respectability on their tone of voice.
11. Clarity means that your doctor tells you in an authoritarian voice that they can’t give you more clarity.
12. Joking, even cynically, is punishable by being told you’re fine no matter what else you say or do.
13. If your problems don’t fit the care mold, it’s perfectly okay to decide your problems were different anyway.
14. Everything you say or do can always be interpreted as a way in which you purposefully bother other people.
15. Not treating you like you are “handicapped” means telling you that melting down is not acceptable and expecting you to have no more meltdowns, despite the fact that you’ve had meltdowns for fifteen years and have been told they’re unacceptable for at least a million times. Maybe you’re just unwilling to change?
16. When patients act up, they’re supposed to take responsibility for their behavior; when staff act up, the patient called for it.

Now, my one big resolution for the second year in hospital is that it isn’t going to be a year again.

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