Communicating Coma Man Rom Houben is a Cruel Hoax

[Ian David]

Tuesday, November 24, 2009
Facilitated Communication for 23-Year Coma Man?

In the newspaper yesterday, it was a heart-rending story. A man lies in a coma for 23 years, until a brain scan reveals he is actually conscious after all, and has been all that time. He is given a keyboard, and wow! He can tell us all about his thoughts and feelings, and how he coped throughout his long imprisonment, trapped inside his own body.

http://2.bp.blogspot.com/_bmqReJkAT2E/SwulluV2AjI/AAAAAAAAAGg/CwANX4vrBlo/s200/coma+man.JPG


On TV last night, it looked like something else. Rom Houben was not exactly typing out his own messages. They were being typed by a "helper" who was holding his hand and carefully aiming his index finger at a flat touchscreen. He did not appear to be even looking at the screen (as you can clearly see in these pictures from the BBC & Guardian), yet he typed with amazing speed and accuracy. Now read this extract from the Facilitated Communication (FC) page at the Skeptic's Dictionary:

FC clients routinely use a flat board or keyboard, over which the facilitator holds their pointing finger. Even the most expert typist could not routinely hit correct letters without some reference as a starting point. (Try looking away from your keyboard and typing a sentence using just one finger held in the air above the keyboard.) Facilitators routinely look at the keyboard; clients do not. The messages' basic coherence indicates that they most probably are produced by someone who is looking at the keyboard.

The resemblance is uncanny, is it not? Needless to say, FC is complete bollocks. It is easy to test: show the patient some stimulus or other with the facilitator absent, then bring them back in and ask what it was. If they can only "see" what the facilitator has seen, it is not communication. Has this been done for Coma Man? None of the stories I have read seem to have mentioned this possibility. Are we being taken for a ride?

<snip>

UPDATE 2: Now the mighty Randi is on the case. He seems pretty sure it's a cruel farce. PZ Myers is sceptical too, but it also looks like the story is proving popular with right-wing yanks keen to restart the Terri Schiavo debate. I smell a rat. I smell a giant rat...

More:
http://punkpsychologist.blogspot.com/2009/11/facilitated-communication-for-23-year.html


See prior thread:

Before anybody screams "Terry Schiavo!", re-read the "brains scans revealed" part.
http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=389&topic_id=7078509&mesg_id=7078509

[Brickbat]

1. I think I saw this on Law and Order once. Many years ago, before it had a bunch of letters after

its name.

[dflprincess]

13. I remember that episode

it had to do with "facilitated communication" and autistic kids.

[Brickbat]

16. Yup. And they sent the communicator out of the room and showed the kid a picture of a car, or

something, and when the communicator came back in, she couldn't help the kid type what he had seen, because she hadn't seen it.

[kid a]

2. k&r - someone will have to explain very slowly (or type it out) for Glenn Beck

[Taverner]

3. I get that distinct rat aroma too....

[BurtWorm]

4. I've just posted about the difference between this alleged communication

and Jean-Dominique Bauby's painstakingly slow method, as recreated in the film The Butterfly and the Diving Bell. It's not likely at all that Houbens and his family have hit on a better form of communicating than Bauby and his network.

[Ian David]

5. Cool. Can you post a link to it here, please? n/t

[BurtWorm]

8. Voila

http://journals.democraticunderground.com/BurtWorm/3922

[tonysam]

6. No matter. Let's just kill him; he's a useless eater

The prejudice of many against those with severe disabilities is mindboggling.

I couldn't give a shit less what the "amazing" Randi says. It doesn't matter.

I have KNOWN for years about FC being a hoax; 60 Minutes did a piece on it many, many years ago. I wrote a term paper for one of my classes about it.

But the hatred towards people weaker than themselves needs to stop.

[SidDithers]

7. Yes, that's exactly what the OP said...

that the guy in the coma should be killed.

:eyes:

Sid

[Brickbat]

9. I agree with you.

A friend of mine educated me during the Schiavo debacle and completely turned around my way of thinking. I can't say I'm completely aware of disability issues but she really made me think in a different way -- which is rare on the Internet -- and I became disgusted with the callous, throw-away attitude many had toward Schiavo, here and elsewhere.

[Ian David]

14. Whatever...

[Name removed]

18. Deleted message

Message removed by moderator. Click here to review the message board rules.

[Name removed]

21. Deleted message

Message removed by moderator. Click here to review the message board rules.

[me b zola]

26. Yeah, I'm sure you're real good at that "thinking" thing

~and the money shot...

[Brickbat]

27. Um...wow.

Nice broad-brush you got there.

[me b zola]

28. *This* is what "turned your thinking around"?

:rofl:

[Brickbat]

36. What, those photos you posted?

No, it was long discussions with a disabled friend of mine, who uses the same type of feeding tube Schiavo did.

[deek]

54. On DU, we are not allowed to believe that Terri was murdered

and still be nonreligious, liberal progressives.

[saltpoint]

55. I lost respect for the argument that Schiavo was "alive" when Bill Frist

diagnosed her as such via videotape.

The freak show that case drew to its cause was unbelievable.

[Ian David]

74. Terri Schiavo is STILL alive. The urn containing her ashes is laughing and smiling. n/t

[saltpoint]

78. : )

[SidDithers]

58. You can believe whatever you want...

but if you believe Terri Schiavo (I'm not on a first-name basis with her, like you are) was murdered, then your belief is based on ignorance.

Sid

[Hepburn]

69. +1...n/t

[Taverner]

65. There was NO BRAIN ACTIVITY!!! How many times do we have to repeat this???

Those videos of her "smiling" were culled from hours and hours and were involuntary movements

Look at the CAT scans of Shiavo - they showed NO activity. None.

She was dead. What they were keeping "alive" was just a circulatory system, nothing more

[Ian David]

11. Who said we should kill or hate the coma guy?

[MattBaggins]

19. No one; absolutely no one,

has called for him to be killed.

people are pointing out a disgusting hoax being played out on traumatized families.

This "Doctor" is no better than that charlatan John Edward, and his "crossing over" parlor tricks.

[BurtWorm]

71. Actually, the doctor is not perpetrating the FC hoax.

He may have been ignorant of FC when the story first came out. Steven Novella of the Yale University School of Medicine says Dr. Laurey is highly respected in neurology.

Apparently, the Houben family broke this story, not Laurey. They've been misled into thinking Houben is communicating through the nurse, but they were encouraged to pursue communicating with Houben by Laurey's investigation, **many months ago,** of several cases of persistent vegetative state, including Houben's, that he found to be better diagnosed as "minimally conscious states," based on scans showing greater cortical activity than in PVS. The media contacted Lautey *after* the family "went public." I don't think Laurey has said anything about Houben being "locked in." His claim is much less dramatic--though it's dramatic enough. It has yet to be determined if Houben is more than just minimally conscious, however.

Read this for a well-reasoned analysis of the best facts available to most of us on this case right now:

http://www.theness.com/neurologicablog/?p=1286

[drm604]

20. Please show us all where the OP expressed any hatred towards Mr. Houben

or suggested that he should be killed.

If you can't do that then please apologize to the OP for your false accusations against him.

[cali]

49. your post is sick. the op's contempt is directed toward those

using the victim, not the poor man himself. And yes, I consider him unfortunate.

[saltpoint]

51. The OP does not assail the personhood of Mr. Houben.

He asks into the medical verification of Mr. Houben's ability to communicate after having been felt to be unresponsive owing to his medical condition.

The rat smell referenced is the same whiff I'm getting and the OP is careful and pertinent in referencing the Terry Schiavo freak show of recent years in Florida, which agitated more right-wing nutbags than any of us knew existed.

In essence the OP calls for heightened scrutiny to investigate the nearly-unbelievable claims made by Mr. Houben's family. I think that's sound logic. More critical thinking, not less, is a good idea.

[Taverner]

64. Um, brain dead is dead OK?

If you are like Terri Shaivo and your brain is mostly water, then you are DEAD

No "there" to keep alive

[jberryhill]

10. Another View Of The Keyboard....

[Ian David]

12. Some morons believe in that crap.

They'll just assume coma guy is communicating with the spirit world.

[arcadian]

15. OUIJA

[arcane1]

17. FC = scam

or hoax, fraud, trick, lie, many other words apply

[Javaman]

22. Terry Schiavo!

you like baiting me, don't you?

:)

[SidDithers]

23. You're a bad, bad man...

:evilgrin:

Sid

[KamaAina]

24. I personally know someone who used to use FC

and, indeed, have contributed to her new magazine.

That's right, magazine. Before FC, her IQ was thought to be 10. Then she started FC. Eventually she moved on to augmented communication without facilitation, which she uses today.

The woman whose IQ was supposedly 10 is now a graduate of the University of Denver (known as DU!).

So I do get a bit hot under the collar when I see FC called "Ouija board stuff". I'd like to see service dogs trained to do the facilitation, just to hear the skeptics say "But how do we know the dog isn't really typing for her?" (W-O-O-F, W-O-O-F...)

edit: spelling

[Odin2005]

25. +1,000,000

The bashing of FC in this thread is disgusting. Reminds me of people that still dogmatically assert "low functioning" autistics are soulless robots.

[hayu_lol]

29. Had a DIL who was in a coma for over 7 months.

Research in this area is important provided it does not enter the realm of faith healing and other false premises.

There may come a time when we can plug into the brains of COMA patients and actually communicate with those who are still sentient beings.

Not getting much in the way of hard accurate news about this event as yet.

After that much time in a full COMA, the patient would probably complain first about his bedsores and other aches and pains.

[SnakeEyes]

30. Has nothing to do with the view of autistics

and everything to do with the fraud that is FC. The autistic is the victim here. As are the people who want to believe that are taken for a ride.

[Odin2005]

31. So you are calling KamaAina a liar?

[Name removed]

38. Deleted message

Message removed by moderator. Click here to review the message board rules.

[KamaAina]

39. Please tell me you forgot this

:sarcasm:

I have seen this woman use augmented (though not facilitated) communication. I email and chat with her frequently (not frequently enough, actually :loveya: ). And don't you know, she was recently appointed to a prestigious Federal interagency committee on autism.

I have half a mind to email this thread to her!

Edit: Upon further review, I now have a full mind to email this to her. She'd make a fine DUer indeed!

[Ian David]

47. Does she require another human being to handle the equipment she uses to communicate?

If so, then you're being scammed.

If she can sit in a room by herself and communicate like Stephen Hawking does, then that's different.

[saltpoint]

56. Agree. And the distinction is enormous.

[KamaAina]

62. Originally, she did.

Now she communicates like Stephen Hawking (and nearly as intelligently!)

[Ian David]

66. The burden of proof lies with you to validate this claim.

See this post:

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=389&topic_id=7079718&mesg_id=7085806

[Odin2005]

72. Ah, yes, autistic people are retarded until they prove otherwise. What bigoted crap.

You probably think this blog run by a "low functioning" autistic is a hoax, too, like so many that have a vested interest in believing such people are "soulless".

[Ian David]

73. I'll take your strawman and put it out on my front yard. Thanks. n/t

[Ian David]

37. As opposed to the one dude's sister to publishes a magazine to prey upon the victims. n/t

[KamaAina]

40. 1) I am an only child. She is a dear friend.

2) The magazine is about issues in autism generally, not FC.
3) The magazine is distributed free electronically. So how is she "preying" on anyone?

[Ian David]

46. My apologies. I had misread what had been said earlier. n/t

[MattBaggins]

32. If this person has a magazine then they are a public figure

Could we have the name of this individual? Perhaps such a person really does exist but could we get some more specifics. I would like to see some story background and proper testing done to verify that the individual in question and not the "facilitator" is really doing the talking.

I do not suspect your motives and am sure you believe the facilitator isn't manipulating things but I desire real proof. I apologize if questioning this offends you; but I have not seen any evidence that FC isn't pure nonsense.

[SidDithers]

34. If I had to guess, I'd say Sharisa Joy Kochmeister...

http://autismvoicesandchoices.weebly.com/

Sid

[KamaAina]

41. DING DING DING!!! No more calls, please. We have a winner.

And now you all can go through the back issues and play "Figure Out KamaAina's Real Name". :-)

edit: caps

[SidDithers]

43. No, you choose to post anonymously, and I respect that choice...nt

Sid

[Odin2005]

44. Ooh, great magazine!

And I do know your real name, now, BWAHAHAHA!!! :evilgrin:

[Name removed]

33. Deleted message

Message removed by moderator. Click here to review the message board rules.

[KamaAina]

42. That would certainly come as news to Yale

where I made cum laude.

Also to the researchers who administered IQ tests to me which came back off scale (>145).

[Ian David]

45. Researchers can be fooled by con-artists, too. That's why it takes magicians sometimes...

... who know the tricks that snake-oil salesmen and hucksters have been using for centuries.

[saltpoint]

52. Your success at Yale does not medically verify Mr. Houben's ability

to communicate by this technology.

As near as I can tell this man's ability to communicate has not been medically evaluated.

[woo me with science]

35. FC always falls apart in controlled research. nt

[Ian David]

48. A simple experiment you can try at home with the kids.

This would make a great school science fair experiment for the kiddies grade 2 through four. It's a little too obvious for any kids older than that, because it's really, REALLY basic stuff.

1) Person A leaves the room.
2) Person B writes down a number between 1 and 100.
3) Person B shows the number to the test subject.
4) Person B hides the number and tells Person A to re-enter the room.
5) Person A asks the test subject what the number was.
6) Person A writes down the number that the test subject says was the correct number.
7) Person A and Person B reveal their numbers at the same time.
8) Repeat this nine more times.
9) If the test subject gets the correct answer more than 6 times, then they may actually be communicating, but a follow-up with a double-blind test with better controls would be in order.


Anyone using facilitated communication who has NOT tried this experiment ALREADY is a total fucking moron, or else they just really don't WANT to know the truth.

[saltpoint]

57. Training service dogs to type on a keyboard.

Why not have them perform root canals as well?

[KamaAina]

61. The service dogs would be performing the facilitation

i.e. supporting the person's arm while s/he types. That would (one hopes) eliminate the possibility that the facilitator might be influencing the communication.

[BurtWorm]

63. It's being reported that Houbens can move one foot at will.

How they know it's at will is beyond me, but they say he replies to yes or no questions that way. One avenue of voluntary self-expression is all one needs to find out if Houbens really can communicate by himself and for himself. See the case of Jean-Claude Bauby (The Diving Bell and the Butterfly) for example. The key is, you don't need a facilitator if you can establish that Houbens can reply to yes or no questions with a visible sign (like a blink or a foot tap).

[KamaAina]

67. Some people find that the facilitator's touch makes it possible to direct the movement

witness my friend, who started out using facilitation and has since moved on to plain old augmented communication like Stephen Hawking uses.

edit: header

[BurtWorm]

68. What is it about the facilitator's touch that makes that possible?

The facilitator is an interpreter, right? Unfortunately, all interpreters are biased, and all communication coming through them is contaminated--or, to use a less charged word, colored--by their bias.

It seems to me that if we really want to know what Houben is thinking, we'd want to be sure to remove any doubt that he's the author of them. Right? If FC is so controversial--and there's no question that it's conttroversial--why not use a less controversial method? They're available, after all.

[saltpoint]

77. I got the context. The up-and-up of the present "facilitator" is the

point in question, IMO.

[saltpoint]

50. Hi, Ian David. I have a question. Do I have this wrong or is this guy

given to us as using this computer gizmo to communicate with single-gesture movement with his spastic foot pushing on the mouse while lying prone on a bed?

Have Board-certified physicians examined him, or is what we're given just from his family?

[Ian David]

60. I'm not entirely sure. n/t

[saltpoint]

53. Here is the coverage at the moment on MSNBC:

http://www.msnbc.msn.com/id/34109227/ns/health-more_health_news/?GT1=43001

It is interesting to read of the bioethicists' misgivings about this technology.

[saltpoint]

59. So how much does one of those gizmos cost? Would that company's

investors not be pleased if one such of those gizmos were to be considered part of hospitals' standard equipment?

Is the facilitator who "facilitated" Mr. Houben's responses one such investor?

[alarimer]

70. He is not communicating; the aides are putting words in his mouth.

There is evidence that he might have locked-in syndrome, rather than having been in a coma for 23 years but he is most certainly not communicating. Facilitated communication is a fraud and a hoax at best.

http://www.sciencebasedmedicine.org/?p=2838

[anonymous171]

75. But he's not in a coma anymore right? nt

[BREMPRO]

76. i saw that too and wondered how the "helper" could be responding so

quickly to what to any careful observer appeared to be limp and unresponsive hand. it reminded me of a Ouija board. those with "locked in syndrome usually use eye movements to communicate. I've never seen this kind of communicaiton with a rather involved "helper" This is really scandalous if they are faking his recovery.