Respectful Insolence

The news is finally filtering out to the rest of the world. As I pointed out a few days ago Dr. Steven Laureys admitted that Rom Houben, the unfortunate victim of a car crash that left him in what had been diagnosed as a persistent vegetative state, was in fact not able to communicate through the woo known as facilitated communication. This came as no surprise to anyone who has followed FC over the years. In fact, what had come as a surprise is that Dr. Laureys could have been so easily taken in by pseudoscience that had been so thoroughly debunked in the 1990s. To his credit, though, after a period of initially stubbornly defending FC, he relented and allowed objective testing, and the result was predictable. It took a few days, but the English language world is learning of the failure of FC in Houben’s case:

The sceptics said it was impossible – and it was. The story of Rom Houben of Belgium, which made headlines worldwide last November when he was shown to be “talking”, was today revealed to have been nothing of the sort.

Dr Steven Laureys, one of the doctors treating him, acknowledged that his patient could not make himself understood after all. Facilitated communication, the technique said to have made Houben’s apparent contact with the outside world possible, did not work, Laureys declared.

“We did not have all the facts before,” he said. “To me, it’s enough to say that this method doesn’t work.” Just three months ago the doctor was proclaiming that Houben had been trapped in his own body, the victim of a horrendous misdiagnosis, and only rescued from his terrible plight thanks to medical advances.

What was not reported is that skeptics were involved in the testing of Rom Houben. I recently received a statement from the Belgian Skeptics:

At the request of the medical institution where Mr Houben is cared for, on February 4 2010 SKEPP was present as advisor for a planned test of this controversial method of communication, and we also conducted our own tests. From the staff of the institute we learned that during two years all attempts to establish any form of communication with the patient by detecting and coding minute movements of the eyes or any other body part had failed. With FC he now seemed to produce correct words and elaborate sentences. Indeed, his answers to our simple test questions were intelligible and sometimes elaborate, but when the facilitator did not know the questions, his answers were all completely wrong. Most of the time he typed with his eyes closed, but as soon as the keyboard was shielded from the facilitator’s view the typing produced gibberish and halted. There clearly was no communication with the patient, only with the facilitator. We wonder what world-shaking news there would have been to communicate if it hadn’t been for the spectacular answers the facilitator produced.

Our intent was to not to test Mr Houben, but to test FC, and once more we demonstrated that the method is a sham. This is not to deny that Mr Houben may have some limited consciousness. If so, how frustrating must it be for him to hear all the bogus messages being produced in his name, without any possibility to protest ? After our test we had a long conversation with Dr. Laureys. He insisted that we test more facilitators before drawing conclusions. We declined and advised him to clearly distance himself from the FC scam, which he has done today. Out of respect and to allow them time to discuss the results with the family and the dedicated staff, we agreed on a 2 weeks embargo before making the results of our test public. Of course, not everyone is convinced yet. In a phone conversation today Mr Houben’s mother told us that she still believes in FC, because “sometimes it had produced answers that only her son could have known”. She is convinced that Dr. Laureys will ultimately find a method to communicate with her son. His team is experimenting with other methods. Let’s hope her wish comes true.

Indeed.

I want to emphasize once again that those of us who blasted FC in the wake of this case said nothing about whether Mr. Houben is conscious or not. We merely pointed out that FC is a long-discredited sham and, from evidence of videos available on the Internet, clearly could not be a mechanism by which Houben communicated if he in fact has consciousness. I and others have also pointed out that it’s horrible enough to be conscious and trapped in a motionless, useless shell, but imagine how much more horrible it would be to be conscious, trapped in a motionless shell, and having the only hope for communication with the outside world coopted by a facilitator.

In any case, props to SKEPP. They done good. Real good. Now let’s hope that, if Houben is conscious, Dr. Laureys, chastened by this experience, will find a way to communicate with him that isn’t based on the ideomotor effect and wishful thinking.

Comments

  1. #1 Max
    February 20, 2010

    I am in shock that this is still an ongoing “treatment” regime. After FC’s spectacular failure with autistic children it seemed that it had no where to go but oblivion. Apparently, like some wealthy sons whose last name begin with B, it is possible to fail upwards.

  2. #2 sophia8
    February 20, 2010

    In a phone conversation today Mr Houben’s mother told us that she still believes in FC, because “sometimes it had produced answers that only her son could have known”.
    You’ll hear exactly the same protest from a bereaved parent who’s been convinced by a scam medium that her child is communicating from “the other side”.
    Sigh. As a parent myself, I feel for her. It’s that fraud “facilitator” that I want to strangle.

  3. #3 Jennifer B. Phillips
    February 20, 2010

    To me, the creepiest aspect of this ‘revelation’ is the circumstances of these follow-up FC tests (described in the NPR coverage of this story, here). Seems that when these additional, more rigorous studies were proposed, ‘Rom’ (via his FC, of course) responded with comments like “I don’t want to” and “You don’t trust me”. Only when they replaced this FC with another did his responses change to….nothing at all. Whatever her intentions, it seems pretty clear that the original FC knew that she wasn’t really speaking for Rom. She knew it and she did it anyway, presenting her own thoughts as his for his family, his caregivers, and an international audience. I find that utterly sickening.

  4. #4 borealys
    February 20, 2010

    I agree with Sophia. As a speech therapist myself, I’m far less affronted by the actions of Dr. Laureys as by the actions of Linda Wouters. How DARE this woman present herself as a legitimate speech therapist when she’s doing the exact opposite of what speech therapists are trained and trusted to do? Our job is to help people gain communication skills, not to take any chances of establishing real communication away from them — which is exactly what she did, since all efforts to find another way to communicate stopped when the FC use started.

    If she knew what she was doing, she has no business claiming to be a speech therapist. If she didn’t know what she was doing, she *still* has no business claiming to be a speech therapist, since FC is the most famous piece of pseudoscientific garbage in the field. A speech therapist who isn’t wise to FC is a grossly incompetent speech therapist with no business using the title.

    This story made me so very, very angry. That poor man. That poor family. Arrrgh.

  5. #5 SimonG
    February 20, 2010

    I am usually willing to believe that cranks genuinely believe in what they’re doing: the human capacity for self-deception and rationalisation is considerable. But in this case it’s hard to credit that the “facilitator” was not fully aware of what she was doing.

  6. #6 davep
    February 20, 2010

    SKEPP: “[Laureys] insisted that we test more facilitators before drawing conclusions.”

    But it seems that Laureys did no research into the effectiveness of “facilitated communication” before he used it to draw his “conclusions”.

  7. #7 Gingerbaker
    February 20, 2010

    “We did not have all the facts before,” he said.

    Sigh.

  8. #8 Alexis
    February 20, 2010

    People believe what they want to be true. Terri Shaivo’s parents and their religious hangers-on still believe that she was aware of her surroundings and that her facial tics, ‘smiles’ and grimaces were proof of this, rather than simple neurological impulses, despite an autopsy proving otherwise. Anyway, the ‘facilitator’ has the moral standards of a child molester.

  9. #9 Uncle Dave
    February 20, 2010

    This should be a criminal matter of identity theft.

    It is hard to believe that the “Facilitator” did not know or was fully conscience of what she was doing indeed!!!!

    I suppose Bernie Madoff was not fully aware that he was running a ponzi scheme either?
    At least in the dark ages, no one would attempt this crap for fear of being identified by the community church elders as a witch.

  10. #10 DLC
    February 20, 2010

    I am reminded of cases here in the states where FC’ers would tell doctors, parents and others (especially news media) that the person they were using as a ventriloquist’s dummycommunicating for was abused or wanted to write the next great American novel, and people believed it without reservation. I was not surprised then to find it was a bunch of bollocks, and I am not surprised now. Although as I’ve said before on this topic, I feel for Mr Houben and his family. They’ve been put through the mill for no good reason.
    Mr. Houben may indeed be “locked in”, but if he can communicate it won’t be through some woman’s finger-pointing.

  11. #11 TwoYaks
    February 20, 2010

    For everyone blasting the Facilitator… this need not be pure fraud. It could be that the Facilitator earnestly believed it worked too. In the 90s, there were FC proponents who took part in the tests, who were utterly disheartened and destroyed when they found out they couldn’t facilitate anything. Call me naïve, but I’m inclined to give the Facilitator the benefit of the doubt.

  12. #12 Tilsim
    February 21, 2010

    It’s nice that the Guardian took the trouble to announce the non-miracle, but it’s a pity they left at least three miracle articles from 23 and 24 november online without adding a note about the debunction.

  13. #13 davek
    February 21, 2010

    @TwoYaks,

    Unlike in the 90′s, there is ample evidence now that FC is a sham. Unless you believe health professionals have no duty to keep current, Wouters is either culpably negligent or a conscious fake.

  14. #14 Joseph
    February 21, 2010

    Call me naïve, but I’m inclined to give the Facilitator the benefit of the doubt.

    Maybe in the 90s, but in this day and age? They should know better by now.

  15. #15 blf
    February 21, 2010

    Jennifer B. Phillips@3 wrote (my emphasis):

    Seems that when these additional, more rigorous studies were proposed, ‘Rom’ (via his FC, of course) responded with comments like “I don’t want to” and “You don’t trust me”. Only when they replaced this FC with another did his responses change to….nothing at all.

    That is not at all how I originally read the article—I thought the stonewalling was directly from the facilitatorscammer and not some “facilitated communication”invention—but upon re-reading the article it’s not clear. You could be right.

  16. #16 Ian
    February 21, 2010

    I’m inclined to agree with TwoYaks. Simply because the scientific community has debunked it, doesn’t mean that people no longer believe it can be true. People still believe in a lot of things that science says are impossible: Noah’s flood, most “alternative” treatments… alkaline water is predicated on the idea that people don’t understand basic buffer chemistry that is hundreds of years old but still flies off the shelf.

    I’m not suggesting that the people aren’t legally negligent, because they are engaging in a practice without understanding the state of the science behind it, and while that may violate medical ethics, it is not really a clear-cut violation of personal day-to-day ethics. As a result, it’s hard to say the facilitators are necessarily bad people; misguided and stupid absolutely, but not evil.

  17. #17 amphiox
    February 21, 2010

    and while that may violate medical ethics, it is not really a clear-cut violation of personal day-to-day ethics

    Is it not a part of personal day-to-day ethics that when you offer to do something for or on behalf on another person, you make sure that you can do a good and proper job of it, and that you possess the required background knowledge to perform the task competently?

    All medical ethics (and all other professional ethics too) are subsets of personal day-to-day ethics. They may be expressed in more formalized terms because large sums of money are involved, but that does not change this fundamental aspect of their nature.

    All violations of any type of professional ethics is also a violation of personal day-to-day ethics.

  18. #18 John Marley
    February 21, 2010

    @ TwoYaks and Ian

    Seems that when these additional, more rigorous studies were proposed, ‘Rom’ (via his FC, of course) responded with comments like “I don’t want to” and “You don’t trust me”.

    If this person really believed, testing wouldn’t be a threat. This alone screams “Scam!”

  19. #19 dogmatichaos
    February 21, 2010

    The problem here was not only just that is was a sham, but that the people who initially pointing out it was a sham (or at least highly dubious) were in the vast minority.

    Seriously, as far as I could tell, in my circle of friends and acquaintences I was the only one holding up a finger at this story and saying: “how is this FC any less bogus than every other case in the history of the world?” Even my father-in-law to be, a usually incredibly intelligent and skeptical doctor seemed to buy into this one.

    I guess this just goes to show if you take an old whore, dress her up in a really expensive dress and put on plenty of makeup, then she might still look good enough for one more walk around the block. Wonder what old whores (pseudosciences) we’ll see walking around the block in the near future?

    As far as Mr. Houben’s goes, it’s almost impossible to fully contemplate how horrible and torturous the whole sham had to be for him.

  20. #20 borealys
    February 21, 2010

    The question of whether or not Linda Wouters deserves any sort of benefit of the doubt comes down to one thing — was she a licensed health care professional of any sort?

    If she was, as the English-language reports have stated, a speech therapist, then there is no excuse for what she did. Period. It is, at the very best, a case of gross professional incompetence worthy of formal censure. There are plenty of not-adequately-evidence-based treatments in the field of speech-language pathology, but only a few well-established worse-than-useless treatments, of which FC is by far the best known. A speech therapist, without question, should have known better.

    If she wasn’t an actual licensed speech therapist, but a nurse or a personal support worker or something of the sort, she should *still* have known better. She should have known better than to think she could do a better job than actual specialists in alternative communication. Speech therapists exist for a reason, and no one who works in health care has any excuse not to know that. That isn’t to say that there aren’t people who overstep their professional bounds, or that it’s always a gross ethical violation. But there are restricted activities and protected titles and scopes of practice among the allied health professions for a reason.

    Linda Wouters may well have believed in what she was doing. That doesn’t excuse her actions. Depending on what her training was, it might well be just as bad as conscious fraud.

  21. #21 Pablo
    February 21, 2010

    I guess this just goes to show if you take an old whore, dress her up in a really expensive dress and put on plenty of makeup, then she might still look good enough for one more walk around the block. Wonder what old whores (pseudosciences) we’ll see walking around the block in the near future?

    I don’t think this is fair to prostitutes.

  22. #22 Sastra
    February 21, 2010

    I think it would be interesting to find out if this facilitator — or facilitators in general — believe strongly in the existence of ESP, and think that this is an integral component of FC. If they believe they can somehow sense the very thoughts of the person whose hand they are guiding, then sincere self-deception becomes a more plausible option.

    Consider all the people who are very, very sure they communicate with God, and cannot explain — and do not care — how they “just know” that the impulses, answers, or feelings they experienced weren’t their own, but were prompted by an Outside Mind. If this way of re-framing your own thoughts is a habit, I can see it spilling over into something like FC, and taking the o-so-humble sense of certainty along with it. The more you want to help the family, the more you will look inside for your “guidance.”

  23. #23 Pablo
    February 21, 2010

    Good call, Sastra. I wouldn’t be surprised that these people spend so much time with the patient and get so emotionally attached that they do think they are “channeling” their thoughts by extra-sensory means, and then convince themselves that the person is really communicating.

  24. #24 Ian
    February 21, 2010

    @amphix

    Is it not a part of personal day-to-day ethics that when you offer to do something for or on behalf on another person, you make sure that you can do a good and proper job of it, and that you possess the required background knowledge to perform the task competently?

    I would say no. If I offer to help my friend paint his house, assuming that because it seems easy that I am competent to perform the task or because I believe (however erroneously) that I am a master painter, and then I do a crappy job, that doesn’t make me an unethical person. It simply means I am unreliable and have misplaced faith in my own abilities.

    Additionally, medical ethics are not a product of the money involved, but the stakes involved. While everyone SHOULD be bound by them, the fact is that there are only consequences in certain professions, and as a result they really only apply to those professions. I think it’s improper to hold a pseudo-violation of medical ethics tantamount to outright fraud and maleficence. The duty of care was in the hands of the physician, who IS bound by medical ethics; however, it would be difficult to quantify any ‘harm’ from FC so it’s likely not a sufficient breach to warrant sanction, let alone outright condemnation.

    For the record, I think what they did is deplorable and they should have known better, but it’s easy to assign blame when we’re not connected to the case and all I’m saying is that there is another valid perspective on this dilemma.

  25. #25 melior
    February 21, 2010

    Perhaps this can be traced to our failure to adequately teach the history of science to today’s medical practitioners.

    Such flim-flammery (or self-deception) has been well-known since at least the 1800′s (cf. “Clever Hans” the amazing math-problem-solving horse). Heck, there was even a Simpson’s cartoon episode in which baby Maggie tested as a genius on IQ tests.

  26. #26 attack_laurel
    February 21, 2010

    I don’t think this is fair to prostitutes.

    Thank you, Pablo. I found it an unnecessarily misogynistic analogy. I prefer: “if you put icing on a brick and call it a cupcake, some people will still bite in, no matter how many teeth they have previously broken on the brick”.

  27. #27 Pablo
    February 21, 2010

    attack_laurel

    While my response was somewhat snarky, there is actually an important point. Even if we were to accept that prostitution is wrong/bad and that “whoredom” is undesirable, it still is a bad comparison because these are still people and would be “redeemable.” Your description of icing on a brick makes a lot more sense because the brick, like whackery, is always inedible.

    I was going to call it lipstick on a pig, but then again, that is not fair to pigs, either.

  28. #28 borealys
    February 21, 2010

    Ian: I think it’s improper to hold a pseudo-violation of medical ethics tantamount to outright fraud and maleficence. The duty of care was in the hands of the physician, who IS bound by medical ethics

    The doctor is not the only one bound by professional ethics. All health care professions have ethical codes. If Linda Wouters was a health care professional of any sort, she was bound by a code of ethics just as surely as was the physician.

    I don’t know what the standards are in Belgium, but the Canadian and American codes of ethics for speech therapists can be found here: http://www.caslpa.ca/english/resources/ethics.asp and here: http://www.asha.org/docs/html/ET2003-00166.html

    Note the following points in the ASHA code: 1A: Individuals shall provide all services competently. 1G: Individuals shall evaluate the effectiveness of services rendered and of products dispensed and shall provide services or dispense products only when benefit can reasonably be expected. 2B: Individuals shall engage in only those aspects of the professions that are within the scope of their competence, considering their level of education, training, and experience.

    Can we honestly say that Linda Wouters followed any of these very basic ethical rules?

    Nope, she doesn’t get a pass.

  29. #29 Ian
    February 21, 2010

    Lawyered!

  30. #30 James Sweet
    February 22, 2010

    I have been pleasantly surprised at the amount of mainstream media coverage the correction has received. I turned on my cell phone the other day, and the featured story on the Verizon “News” page was this very one. In addition, a friend with whom I had shared the initially story back in November, as well as the skepticism, e-mailed me unprompted on Saturday to point out this story.

    This is a heartbreaking story, and nobody could call this a happy ending, but… given the fiasco in November, this is probably about the best outcome that could be hoped for. The doctor has been set straight, the media is acknowledging their credulous error, and Houben is getting another (real) shot at trying to communicate.

    I can’t imagine what the family must be feeling right now though… :/

  31. #31 James Sweet
    February 22, 2010

    @sophia8: Yep. Earlier today, before reading the blurb from SKEPP, I wrote this to a friend:

    I can only imagine what the family must be feeling, to have realized that all those things they thought he was saying to them were all an illusion.  I have not heard anything about them, but I would not be surprised — nor would I blame them, really — if they are experiencing so much cognitive dissonance that they still believe it is him who is communicating, despite damning evidence to the contrary.

    So I was right… and I still don’t blame the mother at all. If I were in that situation, I can’t honestly say that I would be able to overcome the cognitive dissonance either (I think I’d be less likely to fall for the scam in the first place, but if I’d been believing it for years as she had, I don’t know if I could let go)

  32. #32 Jeff Read
    February 22, 2010

    It is hard to believe that the “Facilitator” did not know or was fully conscience of what she was doing indeed!!!!

    Ideomotor effect. FC is a Ouija board with the poor incommunicado’s hand serving as planche.

  33. #33 Uncle Dave
    February 22, 2010

    Joseph said;
    “Call me naïve, but I’m inclined to give the Facilitator the benefit of the doubt.”

    There is a lesser charge known as manslaughter in murder cases. “I did not know the gun was loaded” or “I taught my other two sons to swim by throwing them in the lake.”

    Offering ones self as an FC takes on a very basic and fundemental responsibility of trust. You are basically saying that you can communicate with someone in a coma.
    That in and of itself is something that should give a “normal” person (granted this is a tall order to fill) great pause. Should the FC be given the benefit of the doubt because they are diluted to such an extreme that they believe that they are actually commuicating? Should John Karesh if he had survived Waco, been found guilty of only manslaughter because he felt that he was actually the voice of god?
    At some point you have to ask yourself, am I actually communicating this persons wishes? I know they were likely getting lots of pats on the back from mom during this (oh my god my son is conscience!) and that that was more than likely the fuel required for bad judgement.
    Ignorance is not a justifiable defense under the law.
    Since there were no laws likely broken here, only trust, I think the FC is getting quite a bit of benefit of doubt.

    I just believe in a certain element of human ethics. Claiming to be a voice for the unconscience carries an obvious element of ethical responsibility.

    At what point do we say enough is enough?
    Do we wait until some dufus claims that thier patient claims that they were molested in childhood? ;)

    Board Certified Facilitative Communicator & Brick Hypnotist
    BCFC&BH

  34. #34 Raging Bee
    February 22, 2010

    If I offer to help my friend paint his house, assuming that because it seems easy that I am competent to perform the task or because I believe (however erroneously) that I am a master painter, and then I do a crappy job, that doesn’t make me an unethical person.

    First, painting a house is, in terms of skill and experience required, not even in the same ballpark as communicating with severely brain-damaged people; so your comparison is bogus. Second, if you offer to help with ANY kind of service, without even considering the possibility that you might not do it well enough to do more good than harm; and if you also fail to take any precautions to prevent or minimize damage due to mistakes, then, yes, that is kind of unethical. There’s a LOT of things I’d really love to do for my friends and relatives, but I don’t volunteer to do them because I’m at least reasonably sure it wouldn’t come out right.

    PS: What Uncle Dave said. The claims made on behalf of FC are so extraordinary that one shouldn’t have to be an expert to step back and ask oneself whether one has any real capability to fulfill such claims. “I can communicate with someone who’s been in a coma and uncommunicative for more than ten years” is a far cry from “I can paint your house.”

  35. #35 CanadianChick
    February 22, 2010

    I think people fell for this because it speaks directly to a fear many harbour; that while appearing to be in a persistent vegetative state on the outside, inside there is a “locked in” person frantically trying to communicate…

    I feel for the patient and his family…

  36. #36 James Sweet
    February 22, 2010

    The claims made on behalf of FC are so extraordinary that…

    To play a bit of devil’s advocate here… FC’s claims are extraordinary from a rational, skeptical point of view, but are they really so extraordinary from the point of view with which most people approach the world? Let me ask you, which is more “extraordinary”? Facilitated communication? Or being protected by guardian angels?

    I’m not trying to excuse Wouters actions… but for someone living in a world where angels, demons, gods, devils, miracles, and prayer are all too real (as is the case for the majority of people in the world), FC’s claims don’t really seem all that extraordinary. So the argument that, “She should have been extra skeptical because FC is so incredible” does not really hold water for me.

    That said, I’m not going to make a defense of Wouters. I do not have a strong opinion on whether her sickening practice of using a human being as a Ouija board constitutes a conscious ethical violation or not — it’s still both disgusting and sad either way.

  37. #37 Bruce
    February 22, 2010

    This result raises the question: How horrible would it be for the patient, if he is actually conscious? How much money is being spent keeping him on life support?

    The idea that someone could be locked in – with no way to communicate – and even worse have people pretending to communicate for you, is nothing short of a nightmare. In my opinion, as a matter of course, people in such a hopeless state should be taken off life support. At least, the social health care system should stop paying their support. Each of these people costs society, what, perhaps $100,000 a year?

  38. #38 Jon
    February 22, 2010

    Was Rom just one of this facilitator’s patients? Is she still FC-ing for others perhaps?

  39. #39 borealys
    February 22, 2010

    Lawyered!

    Nope… speech-therapisted! :D

    Seriously, as a speech-language pathologist, I am personally offended by this woman’s actions. Think Orac and Dr. Egnor.