Coma Man Says “Stop Misrepresentin’!”

The news world is agog at the horror of the Belgian man who was thought to be in a coma for 23 years but turns out to have had ‘locked in syndrome’ – in other words, he was conscious the whole time.  This is creepy and sad and tragic, and one of those scenarios we all have on our Never Want to Experience list along with ‘buried alive’ ‘adopted by the Phelps Family’ and ‘accidentally marrying your own mother’. The science seems reasonable: new brain-scanning equipment in 2006 enabled doctors to see that Rom Houben’s brain was working. If that was all the story covered, it would still be an amazing story. Unfortunately the media have been rather distracted by the comments of Mr Houben himself, though, which are delivered to us via his hand tapping on a keyboard, aided by ‘a facilitator’. Yep, it looks for all the world like Rom Houben is now a victim of Facilitated Communication, something which Randi described yesterday as a cruel farce.

Watch the BBC video of Rom’s communication here:

Yesterday the BBC had a different interview online, one in which the journalist says that although Rom speaks fluent English, he was replying to  questions in Flemish. That’s entirely Rom’s choice of course…unless it isn’t. Does the facilitator speak fluent English? Has a test been done to make sure the facilitator is not choosing Rom’s words for him? Have any of the journalists covering this story raised these questions or done any basic research into Facilitated Communication? For Rom Houben’s sake, I would really like to know.

Edit and correction: Jeff Wagg found the BBC video I refer to (as it wasn’t on the BBC news site when I composed this post), it’s here. The journalist says that Rom “understands English”, not that he’s fluent in it. That doesn’t change much, but understanding English isn’t the same as being able to write it (for Rom OR his facilitator, I should add), so I feel a footnote is appropriate.

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  1. Immediately to mind comes the National Enquirer commercials from the 80s. “I want to know!”

    However, I wonder what would happen if he were hooked up to the machine that let folks tweet via thinking? While that required a bit of concentration, it would still be interesting to see if there’s be usable output.

  2. I already read about this story, and my first thought was that he must have been really bored for all those years. I’m sure he was lonely and frustrated too, but I’m surprised he didn’t mention boredom.

  3. People are gasping and are going to be using this as an example of why we shouldn’t pull the plug. If it were me, conscious or not, I’d have wanted the plug pulled a LONG time ago. Which is worse die or to not be able to communicate at ALL for 23 years? Shoot me now!

  4. I am inclined to agree, Freckles. I can’t think of much worse. But he may feel differently – of course I’m sure his facilitator will tell us all about it while signing her lucrative book deal.

  5. When I heard about this, it kind of made me feel physically ill for a few seconds. It is one of those “worse than death” scenarios come to reality. Imagine if a part of your body is itchy, and there is no way to scratch it. It would drive me insane. I don’t know how one couldn’t wish for a swift death.

  6. I was disappointed to see Dr. Nancy Snyderman of NBC falling for this too (Randi cites her in his post). In the past she’s been pretty good on skeptical topics, she even yelled at Matt Lauer once on the topic of vaccines and autism.

    On a more positive note, I’ve noticed a tiny sliver of mainstream media stories on this that are picking up on the facilitated communication angle. One from AP this afternoon: Comatose for 23 years Belgian feels reborn

    Arthur Caplan, a bioethics professor at the University of Pennsylvania, said he is skeptical of Houben’s ability to communicate after seeing video of his hand being moved along the keyboard.

    “That’s called ‘facilitated communication,'” Caplan said. “That is ouija board stuff. It’s been discredited time and time again. When people look at it, it’s usually the person doing the pointing who’s doing the messages, not the person they claim they are helping.”

    Caplan also said the statements Houben allegedly made with the computer seem unnatural for someone with such a profound injury and an inability to communicate for decades.

    Hopefully more of the media will notice the huge amount of coverage in the skeptical blogs.

  7. Saw poor Mr. Houben “typing” with his facilitator on the news this morning and had the exact same thought. It appeared ALL the motor control was with the facilitator. One hopes the fraudcilitator doesn’t have a full schedule of clients.

  8. My initial reaction to this was sheer terror. If this guy were really communicating after that long, I can’t even grasp the possibility that he could be even remotely sane.
    It sucks that I’m hoping for the guy’s sake that he’s a vegtable and the facilitator is running a con, cause that’s the better of his two options.

  9. I blogged about this also. My issue is I don’t know what he’s doing. How awake is he? Did a doctor get clocked when he pinched the guy? If that happened, then I would firmly believe that the man is fully awake. Did the doctors bring him out, or did he just recover? Is he acually responding to stimuli, or doing something similar to responding, like those in Persistance Vegetative States do?

  10. When I saw this on the news late last night I was astonished that any reputable news organisation could actually report something like this and completely miss the rather obvious fact that sometimes the guy isn’t looking at the screen when someone is doing his typing.

    They may as well have Stevie Wonder doing the reporting for all the good these journalists eyes are doing them.

  11. @surly nymph
    I find it hard to believe it too. I kind of had a smaalllll taste of it when I once woke up, but couldn’t move an inch of my muscle for a while for some reason. I tell you, it is one of the most terrifying sensation I have ever experienced. It was especially horrible because I had a ticklish sensation on my foot.

  12. It’s one thing to be awake 23 years and not be able to communicate anything. It’s so much worse to be awake, unable to communicate, have someone put words that aren’t your own into your mouth and see your loved ones believe it’s you saying them unable to see that it’s not you.

    Give me silently-screaming-in-a-shell-of-myself over silently-screaming-inside-a-puppet-version-of-me-that-someone-else-is-controlling any time.

  13. When I read this story for the first time, it had me thinking deeply about the effects of being locked in a state for two decades where I was unable to speak or communicate. I wondered how I would have held up all those years.
    I’m almost angry now that I’ve seen the video. Even now, reading the answers to the journalists’ questions that Mr. Houben “typed”, I can see that there’s more than a slightly rehearsed quality to them.
    This goes to show any good skeptic: Sometimes a visual representation of something will immediately throw out the window thousands of words of commentary to the contrary. I’ll be much more likely to click that “watch video” link from now on…

  14. @Tracy King: The doctor writing at the link you posted says that Laureys is a real expert in this field, even if he did get duped by facilitated communication. But, P.Z. Myers added a comment on his blog saying:

    “The scanning technique used to identify ‘consciousness’ has been criticized. The investigator, Laureys, seems to have a history of endorsing poorly supported hypotheses that patients in a persistent vegetative state are capable of slow recovery.”

    Unfortunately the critique that Myers mentioned is behind a paywall, but the scans may be as bad as the facilitated communication.

    At the end of your link, the doctor recommends Orac’s post, and I’ll second that recommendation:

  15. @Rei Malebario:

    Now that I’ve read more on this Dr Laureys, I have come to the exact opposite conclusion.

    He may be conscious, and he may have been misdiagnosed as being in a persistent vegetative state while actually being somewhat conscious, or having improved over the course of 23 years. fMRI scans have shown increased brain activity (they didn’t bother doing those on him as he’d been in this state for so long).

    But the frantically typing nurse is really destroying any chance of finding alternate ways to genuinly communicate with the patient, and discrediting Laureys’ work in the process.

  16. There’s some Updated news now. Can’t link from iPhone right now but it was an AP article. It seems they have tried a few tests to see who is REALLY speaking and it’s looking more and more as if the man is actually communicating. We’ll see. Either way this is really interesting.

  17. When I first heard this story on the morning news, I was actually buying it until I saw the patient, who wasn’t even looking at the keyboard, type faster with one finger (and two helping hands) than I can with both hands (plus, y’know, keyboard lookage). And I’m not even a vegetable! I mean, I’ve never been tested, but…pretty sure.

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