How to suppress disabled people’s writing.

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The cover of _How To Suppress Women's Writing_ by Joanna Russ I have a book. I have to confess, I’ve never actually read the book. I’ve tried, but the language in it is difficult for me to understand. This does not prevent me from loving the cover of the book. The book is pictured here, but for those who can’t read it from the picture, it says:

She didn’t write it. (But if it’s clear she did the deed…) She wrote it, but she shouldn’t have. (It’s political, sexual, masculine, feminist.) She wrote it, but look what she wrote about. (The bedroom, the kitchen,her family. Other women!) She wrote it, but she wrote only one of it. (“Jane Eyre. Poor dear, that’s all she ever …”) She wrote it, but she isn’t really an artist, and it isn’t really art. (It’s a thriller, a romance, a children’s book. It’s sci fi!) She wrote it, but she had help. (Robert Browning, Branwell Brontë. Her own “masculine side.”) She wrote it, but she’s an anomaly. (Woolf. With Leonard’s help…) She wrote it BUT…

And the title of the book is How to Suppress Women’s Writing by Joanna Russ.

Not having managed to understand more of the book than the cover, I’m not going to comment extensively on the book. But for this post, I’m going to concentrate on the ways I see my writing, and other people’s writing, suppressed constantly, before it even gets to all those “buts”. The “She didn’t write it” part seems to be where a lot of people get stuck with us.

She didn’t write it, because someone was touching her when she “wrote” it.

This is the standard argument against facilitated communication. If someone touches us to help us write things, then obviously it is the person touching us who wrote them.

She didn’t write it, because she wasn’t looking at the keyboard.

See my last post for in-depth information on that myth.

She didn’t write it, because her speech sounds different from her writing.

People often assume that speech and writing should be congruous, and that if writing is somehow more articulate than speech, or contradicts what is said in speech, then it is the writing that is suspect. Speech nearly always trumps writing in what is believed of us. So, if we have speech that goes on autopilot while we write, or if we say the opposite of what we write, it’s our speech that’s believed.

She didn’t write it, because she was just being exploited.

This is one I get a lot, especially in the offline world, especially if I’m saying something simultaneously with someone who gives off a lot less of an air of cognitive impairment than I apparently do. What happens is, while people may accept that I am doing the mechanical act of writing, the assumption is that I didn’t come up with any of the ideas. I got all the ideas from another person, who is exploiting me for their own uses. The interesting thing about this one is that I can actually be the one coming up with some of the ideas, but the other person gets blamed for putting these same ideas into my head.

So, none of my ideas are really my own, they’re just other people’s, exploiting me, supposedly. That’s how the theory goes. I am just the poor innocent pawn of these evil nasty exploiters. And I’m supposed to feel protected by this rather than insulted???

She didn’t write it, because… just look at her!

I don’t quite get this one, but I’ve seen it a lot. Apparently only people who look a certain way can write. Especially, people who look like we might be cognitively disabled, particularly severely cognitively disabled, can’t write, apparently. Not that I’m totally sure what that looks like, but I know I’ve been told that I look like it. So, all you have to do is look at us, and you know, that we didn’t really write what we wrote. Because people who look like us can’t write. End of story, no need for proof or anything.

She didn’t write it, because she can’t be educated enough to write like that.

There’s two assumptions in this. One, that all people of certain sorts didn’t get an education. That one isn’t true. Two, that all people get educated in the same way. That also isn’t true. Donna Williams had a really scattered education until adulthood, and she writes books. Other auties speak of being integrated in regular education even when they didn’t show standard signs of comprehension. And many of us learn in non-standard ways.

She didn’t write it, because she has a mental age of 18 months.

Being able to score well on an IQ test, and being able to write, are two different things. I know of many eloquent writers who scored anywhere from slightly low to very low on IQ tests. I know of several accomplished university students who only discovered they had low IQ scores after they had already gotten advanced degrees. The notion of “mental age” is a meaningless abstraction of the ability to do IQ tests in a certain way.

She didn’t write it, because she writes better than I can, but she’s a retard.

I’m using the offensive word ‘retard’ in here for a reason. It’s an appropriately offensive name for an appropriately offensive sociological category a lot of people get put into. I don’t happen to believe that anyone matches the thought that is in people’s head when they say ‘retard’, no matter how they do on IQ tests. But it is a thought they have in their heads, and it comes into play a lot in these situations. If a so-called ‘retard’ does better than they do at something, that throws their whole mental construct of the world off. So it’s easier to say that we are not really writing. But, no matter how many people think retard at us, it doesn’t mean that some of us can’t be more eloquent writers than some non-disabled people.

She uses an interpreter, so the interpreter is really the person doing the talking.

This happens to me a lot, because I use a cognitive interpreter. That means, someone who is intimately aware of my body language and use of language, as well as my background, who can take a posture and a word or two and elaborate it into what I really mean. I can tell the person at any time that they’ve gotten it wrong, but having such an interpreter can be vital to a communication process because of my trouble with word-finding and other people’s trouble with reading the cues I give off.

Of course, the job of interpreting for me also has a problem attached to it: Quite often the things that I am saying with my body language are things that people want to ignore, as much as possible. A good interpreter will be able to see those and elaborate on them. Like the time my interpreter walked into the room and saw me huddled into a corner terrified of the two staff who were trying to talk me into something, and who told them exactly why I seemed cooperative. They wanted her to leave the room, convinced she was putting words in my mouth (or at least as she said things they didn’t want to hear), even as I said “No, she’s right, she’s absolutely right, let her stay.”

There have even been times when people saw the interpreter, who told them rightly what was happening in my head underneath the appearance of passivity, as a threat, and insisted that I was just fine until the interpreter came in. If I get angry at that, my anger is a sign of the interpreter’s “disruptive” presence, and they try to get the interpreter to leave so they can badger me into submission in peace, or something.

Another problem is the invisibility of my body language and other subtle signals to most non-autistic people. Because they can’t see me as having body language, I am assumed to have none, and the interpreter is assumed to be pulling interpretations out of thin air. Rather than, the interpreter can see what signals I send and is correctly interpreting them. Obviously, if particular non-autistic people can’t see my body language, then nobody can. Or something.

At any rate, when I use an interpreter, what the interpreter says is often not believed, even though the interpreter is often telling them exactly what I am thinking, and even though I always tell the interpreter if she’s getting something wrong.

* * * * * Anyway, I wrote this as an outgrowth of one of the comments on my last post. Someone had asked me, “Why is it that people don’t listen to us about things like how we type?” I am pretty sure the answer lies in the above: They don’t think that we have anything to say, and they don’t think that we actually wrote anything, therefore there’s no way we could have written anything worth listening to, at that.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

52 responses »

  1. Depends on what’s meant by “suppress,” I suppose.

    Easier in some ways to write on the Internet, but all writing is assumed to be done by people with [x], [y], and [z] traits and anyone saying otherwise is taken to be a liar by a lot of people.

  2. With a book, you can burn it or destroy it.

    And there’s all sorts of things that go on in the publishing process.

    There is NO publishing process on the Internet. Or at least, not like the one which produces books.

    Writing is done by anybody who can write.

    I think we miss out on a lot of very interesting work if we don’t have a generous concept of the writer.

  3. I read an interesting article some time ago about the systematic suppression of child authors. The “of course he/she didn’t REALLY write this” arguments follow along very similar lines to those used to suppress the writing of women and disabled people, and to “debunk” facilitated writing.

    “Everyone knows that children can’t write.” “His sentences are too complex. It’s scientifically proven that children can’t grasp language enough to string a complex sentence together.” “My writing at six was gibberish (or, my six-year-old child’s writing is gibberish), so no six-year-old’s abilities could possibly differ from mine (or my child’s) in that way.” “She claims her parents went through and corrected all the spelling and grammar mistakes before it was published. Therefore, it’s not really her work.” “The book was really written by the parents as a publicity stunt.” “He was just dictating and his parents wrote it down, so therefore, it can’t be trusted as an authentic work.” “No child could be educated or well-read enough to write like that.” “She was being exploited, so it’s not authentic.”

    The ‘debunking’ attempts got really ridiculous in the case of Opal Whiteley, where they literally examined her diaries under a microscope to determine the age of the crayons used for writing. There are still people out to ‘prove’ she was a fraud even today.

    I think the common thread here is societal discomfort with the idea that certain groups might have enough personhood to write accurately about their experiences. It’s like the attempted debunkings of slave narratives, claims that they must have been written by white people because no slave could write that way, etc.

  4. Opal believed she was a French Princess.

    I don’t think the fraud was about her writing.

    And she talked a lot about what would now be called abuse.

    What a great story is Opal’s!

    On child authors more generally: Maurice Frank of Spectrum Fairness is a champion for the cause of child authors.

  5. Pingback: Ballastexistenz » Blog Archive » On “contradictions” and so-called prodigies and so-called savants and prejudice and being a freak on display.

  6. I’m not sure if I’d call what he does championing the cause of child authors, except possibly himself. He has tried many times to discredit Luke Jackson by claiming that Luke didn’t really write his books, and that his mother wrote them, exactly the same thing Julian was just discussing as being against child authors.

    By the way, Helen Keller faced a similar problem. In her case, she’d accidentally memorized a story and later wrote it. And was accused of plagiarism and even worse. She was afraid for a long time to write at all, because she was afraid she’d accidentally do the same thing again, and that people would again believe she wasn’t really writing what she was writing.

  7. Yes, most of the Opal debunkers focused on the French princess story, and trying to use the fact that she was institutionalized later in life as ‘proof’ that nothing she said was truswtworthy, but I have sometimes wondered if she may have had a valid reason for believing she was not her mother’s biological child. However, there were a few detractors in her lifetime claiming the diaries hadn’t been written in her childhood because “a six-year-old can’t write like that.”

  8. As you mentioned Helen Kellr, did you know she was a revolutionary socialist, and a fervent supporter of Lenin?

    Go here:
    http://www.marxists.org/reference/archive/keller-helen/index.htm

    Incidentally, I’ve just come back from a week in Athens, where I participated in the 4th European Social Forum, a gathering of anti-capitalists, activists, trade unionists etc from around Europe. I noticed that there was absolutely nothing on disability rights within the programme of seminars and workshops. Now the organisers I should point out are unlikely to be responsible for this – seminars and workshops are proposed by activist groups, not by the organisers. It strikes me that it might be a worthwhile actvity to try and arrange a seminar on autism, or possibly neurodiversity, or some other related angle, for one of these future forums. I understand the next ESF is in September next year in Turkey. Meanwhile, the World Social Forum is in Nairobi in January next year. It should surely be possible for *someone* to try and get organise something of that nature. Might try it myself if the opportinity arises?
    Would you be interested in speaking at an event of that nature, Amanda? I’m asking purely speculatively at this point of course.

  9. Yes, I knew that about her. I’ve read some of the more realistic and less “inspirational-schlock” biographies of her.

    I don’t know. I’d have to know a lot more about the event. But it’s very difficult (both financially and physically) for me to travel, so it’s unlikely that if it were outside a very small area of the USA and Canada I’d be able to even make it. I don’t even have a passport yet, so scratch Canada for the time being, too, even though it’s close to me.

  10. Hmm, difficult there. Of course, any such idea of mine is unlikely to come to anything – mine never do. However, certainly somebody should be putting disability rights generally, and the neurodiversity issue, on the agenda for the global justice movement.

  11. Maurice Frank here. Glad I found this.

    What I have said about Luke Jackson and his mother is sourced, from the Times 16 Aug 2002, when it reviewed the F+G book on its publication. I have not said that his mum entirely wrote the books. Only that she stated publicly at that date that she controlled the editing and formatting of them, worked with him in compiling the ideas to put in them, and claimed – only claimed – “For every half-hour he wrote I probably did 6 hours work.” This was supposed to make it into a proposition for publishing. This claim may well be a parent being insulting, and Luke himself disagrees with it, but he has on record referred to his mum as “my co-editor.” Confirmed in What’s On TV 26 Jul 2003 – “As usual, Jacqui will type and edit the manuscript.”

    I always say these things in a spirit of asking folks to look twice at adult agendas towards children’s writing. I never say it in a spirit of denying Luke’s writing ability, I will repeat here that I have total faith that he was capable of writing the books on his own and they should have let him if he wanted to!

    The publicity machine around Luke has insisted for years on ignoring the issue of wronged child authors, I am forced by that to speak critically of it which offends those of his fans who prefer not to think about anything uncomfortable, hence they try to discredit me by accusing me of discrediting him. It’s a case of folks being made angry by being made to think instead of left in a state of simple comfort. You just need to look at the whole content of what I say instead of seizing on the odd word and closing up into an anger reaction.

  12. People pull this BS about minors as well. It’s unbelievable how many people have claimed that I cannot be sixteen just after seeing my writing.

  13. I believe the main argument against FC comes in the form of hundreds of controlled studies which fail to validate FC, and, depending on the study, conclusively show that the author of the material is the facilitator rather than the communicator. The scant evidence of FC coupled with the overwhelming evidence of facilitator control suggests that FC, in at least the vast majority of cases, is a pseudoscientific phenomena. For instance, one classic research design is to give the facilitator and the communicator identical answers to a simple question such as what shape appears on a card, given the communicator but not the facilitator an answer to the question, and give the facilitator a different answer than the communicator. In such experiments, inevitably the communicator gets it right in the first case, peforms no better than chance in the second, and answers with the misinformation supplied to the facilitator in the third. These kind of studies are simply ignored in this post in preference for what can only be described as a house of strawmen.

    For a recent metanalysis of FC validation studies, see here:

    http://66.102.1.104/scholar?hl=en&lr=&q=cache:OsuVwyL1QuEJ:psych.mcmaster.ca/3p3/FCreview.pdf

  14. In the case of Sharisa, I don’t know. I’d have to read specific research on that individual, her history, and the validation methodology used. As indicated by the above metananalysis, there are a minority of studies published that support validation of FC, but they are almost if not always fatally flawed in their research design (lacking proper controls, etc.) In the case of Anne MacDonald, she absolutely did not pass such a test and I will discuss that when I have more time to write about how her communication was “validated” in detail. But, for now, let us assume the most optimistic scenario and accept that there are limited examples where individuals with communication disorder use FC and produce communication superior to other means available to them that is validated in a sound manner. This does not erase the volumes of studies on FC that continually demonstrate the lack of evidence for communication from client, facilitator authorship, and the incorrect nature of FC proponent explanations for validation failure in FC research. The state of the evidence builds a overwhelming case for FC primarily being controlled by facilitators. If there are isolated examples where this is not the case, they do not cease being isolated examples.

    But this really is neither here nor there to the point I was making. You did not actually print the “standard argument against facilitated communication.” Instead, you choose a easily refuted strawman argument. At the height of the FC explosion in America, a book called “Facilitated Communication: The Clinical and Social Phenomenon.” In it there is two papers written by two of the then most prominent appropriately credentialed scientists to critique FC. The first is “The Quality of Evidence” by Gina Green. The second is “Establishing the Source of Communication” by Howard C. Shane. I think the material contained therein more accurately describes the standard argument against FC. It is consistent with the research that has followed, though the issue is generally considered a settled matter in the scientific community (In the same sense as evolutionary theory or global warming.)

    Further, when very young children who have been diagnosed with significant cognitive deficits produce work far exceeding the expected ability of most of their age group or even what is currently known about their age group, but consistent with the potential abilities of their facilitators, the argument just isn’t that kids can’t do this. Rather, the argument is that the data is more consistent with the hypothesis of facilitator authorship, given everything else that is known. It’s a subtle but vitally important difference between the actual argument and the one you offered. In some instances, were are talking about children who in a matter of a few weeks have started writing at a college level with a great deal of knowledge on complex topics that require a substantive educational background. The argument isn’t simply that they can’t do this because it is impossible. The argument is that this is better explained in terms of a hypothesis that better conforms to what we know about the world and – oh yeah – has hundreds of studies rigorously confirming it. It’s a question of comparative likelihood.

  15. A couple more myths
    “She didn’t write that because she can’t spell.” Spelling is apparently more important than content to some people. This is so illogical I can’t find a way to argue with it. It’s like trying to disprove that invisible alligators dance on the lawn at midnight.
    “He didn’t write that because he doesn’t have sufficient co-ordination to write by hand, so if he types or dictates something good he must have cheated.”
    This happens to my brother, and to a friend of one of my sisters, on a daily basis in school. Another friend was accused of plagiarism when she did a good piece of work when she was allowed to type. I got the opposite “You can speak and type well, so if your handwritten work is unfinished/poor/illegible it’s because you’re not trying. People who aren’t as clever as you have no problem with the physical act of writing, so you can’t have a problem either.” (or words to that effect)

    “He didn’t write that because he can’t write well under timed conditions.” This isn’t exclusive to disabled people, or exclusive to writing. Timed conditons make some people so nervous that they’re incapable of anything. But it’s particularly true of people who have problems with co-ordination and/or processing speed.

    “She didn’t write that because she’s writing from the perspective of a non-disabled character, and she couldn’t imagine what life is like from that perspective (especially if she’s is on the autistic spectrum, because autistics aren’t creative)” Are men only allowed to write male characters? Are women only allowed to write female characters? Are people only allowed to write about characters with of same nationality, class, age and sexual orientation as themselves? Is everyone to be forbidden from writing in a historical period other than that in which they live? If a writer who can’t speak writes from the perspective of a character who can speak and this is wrong, is it wrong for a writer who cannot turn invisible to write about a character who can turn invisible?
    And as for “autistics aren’t creative” – that has been disproved by innumerable autistic writers, artists, musicians etc (and I’m speaking as a non-autistic here). But this either proves that they didn’t do it, or that they aren’t autistic. Because autistics can’t be creative. Because if you’re creative, it proves you aren’t autistic. Because autistics can’t be creative. How is this an argument?

  16. What concerns me is that clearly at least some people who appear to be using FC who are in fact not communicating at all, but acting as a vehicle for the communication of the facilitator. It seems clear this can happen even when the facilitator believes that he or she is not influencing the process. I worry that in the case of people who only communicate with FC, that in some cases their wishes may go completely unrecognized, as everyone (including the facilitator) continues to believe that the person is communicating. Does anyone have any knowledge of or ideas about how to prevent this from happening?

  17. I guess “what we know about the world” varies a lot, because I know a lot of things that make some of the things that get called FC, as well as some of the products of it, make sense to me.

    While also being aware that really invasive forms of influence can be present in some of the other things that get called FC (and that they can even be combined — even Sue Rubin, who used FC, complained about this stuff.. the unwanted influence on her was what drove her to learn independent typing).

    As far as the standard argument… I didn’t mean that I had listed every single detail of how people argued against it and what studies existed. Just that there was a standard argument, which the conclusion of was that people who need people touching them in order to type are not the ones typing.

    I was also sloppy about Anne MacDonald. I know that she was actually put in a room and told to repeat two words that she had heard and her facilitator had not heard. That differs from the kind of testing where the facilitator is told different words. She typed one word correctly, and then the second word she typed a word that was similar to the one said. I think she types independently now?

    At a conference recently, I learned that Sharisa Kochmeister went through some pretty rigorous testing where she was shown one object and her facilitator was shown another. She passed. There were other times she was asked to name objects that she had been shown while her facilitator was not in the room. The person tried to trick her by showing her objects that were not in the bunch of toys her facilitator had seen when he was in the room. She got those right too.

    If we’re going to talk about human beings, though, I’d appreciate people not being referred to as cases. Please refrain from doing that around here.

    That said, I’m sure Sharisa can and will speak for herself on this. (She types independently now, by the way. How is that one explained in the people who have moved on to that, and who then say either that their communication using FC was valid communication, or they point out which parts were valid and which were not?)

  18. “f we’re going to talk about human beings, though, I’d appreciate people not being referred to as cases. Please refrain from doing that around here.”

    Sorry about that, that wasn’t the most articulate post. I was intending the word case in the sense of “situation” rather than “patient.” Thanks for pointing it out.

    I think it would be a pretty big mistake to take the scientific evidence which suggests that there is often facilitator influence, and interpret it to mean that there is always facilitator influence or that there is no communicator influence.

  19. I’ve read numerous critiques of FC in the available literature. Not one critique argued the mere fact that there is someone touching the communicator that means they are not the author. I think this is an egregiously unfair representation of standard arguments against FC. I do not see how the term standard can apply. The fact that it is easily refuted makes it a strawman. The standard arguments against FC tend to involve pointing to studies that fail to validate FC, studies that demonstrate facilitator authorship of facilitated communications, attempts to argue that it is more plausible the material produced is a reflection of the facilitator, explanations in terms of a known phenomenon – automatic writing in particular, attacking FC proponent’s theorectical grounding as not supported by contemporary understanding of autism, attacking FC proponents research for employing poor methodology or simply consisting of unverified anecdotes, attacking FC proponents explanations for negative research as implausible ad hoc reasoning, etc.

    To be clear, I am not suggesting that it is impossible for anyone, anywhere to benefit from FC. What I am suggesting is the the available experimental and clinical evidence suggests that the vast majority of instances of facilitated communication in practice do not involve communication from the person being facilitated, but rather are authored, without conscious awareness, by the facilitator. And yes, this does include numerous instances of people, including children, writing high-level material via FC.

    I think the intial blog entry does a great disservice to the actual reasons why a person might think this. I don’t want to spam a bunch of links to research, but I think if someone wanted to actually know why people do not think disabled people who communicate via FC are not really communicating at all, this post would at best fail to inform them and at worst actively mislead them.

    The best example on the list is not looking at the keyboard, since that is a classic charge against FC. I think the reply misses the more sophisticated context of that argument. It’s not just not occasionally looking at a keyboard. It’s generally understood that people are capable of typing without looking once they establish a spatial frame of reference. It’s not looking at it in any respect in order to establish that spatial frame of reference. Otherwise, it’s the communicator looking at the keyboard, having the keyboard’s position altered without the communicator seeing the nature of the alteration, yet still seeing the communicator producing the same communication they always do *only* as long as the facilitator is properly oriented to the keyboard. That is easily explained in terms of facilitator control. It is not easily accommodated by the hypothesis of communicator authorship. They wouldn’t just need to have strong mental maps of the board, they would have to have an amazing ability which has never been demonstrated in any other context. America’s father of FC, Douglas Biklen, has repeatedly stressed the importance of communicator’s looking at the board and has insisted that instances in which they do not produce invalid communication; however, people still choose this line of defense. I think that, at least in part, flows from a misunderstanding of the complaint. FC detractors often bring this up, I think, because the image of a person staring into space why the facilitator intently stares at the board is a powerful symbol of what they think is really going on.

  20. Perhaps you guys might like to read “Autism and the Myth of the Person Alone”, the co authors
    all type to communicate.

    The reason for the United Nations Article 21 is so that the rights of the individual are protected in law. This law
    states quite categorically ” to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice, as defined in the present Convention”. That therefore concludes that it becomes the right of the individual to make the choice and any attempt to deny them this right is an infringement of their rights.

    It means that people who wish to communicate through typing, including supported typing (fc) because they are so physically disabled or for other
    reasons, have the right to do so. And in law that right is upheld. By denying any individual that right because of out dated research on the subject people are breaking the law.

  21. Jason: some people who use FC could have a very highly developed photographic memory….or something that allows for seeing something once and having the image frozen in their minds…..to be used whenever it’s needed. Also, many people with visual issues due to lighting and stuff…..use peripheral vision……they may look straight ahead but see out of the corners of their eyes. What’s to say they aren’t seeing the keyboard just like that?

    Mozart was apparently able to hear something played once, and repeat it exactly, to a note. I’m sure the same thing can happen with visual things like a keyboard…..looking at it once.

    TI

  22. If FC is not a valid means of communication, that person’s right to communicate is not being violated by not using FC. You can’t use FC to demonstrate a person wants to communicate via FC when the validity of FC itself is what’s under dispute. Indeed, they are being abused by their caregivers by having their real personality – their real thoughts, their real desires – suppressed and replaced by the unwitting facilitators. If FC involves using people with little to no ability to communicate like a Ouija board, that is a violation of their rights. And there is an ocean of evidence that this is exactly what occurs in at least the vast majority of instances in which FC is used. There are thousands of developmentally disabled people across the united states right now who are having their rights violated by being brought into FC. The hard truth is that Anne MacDonald (who is not an independent typist now incidentally) was never writing what was attributed to her. Crossely et. al. were. To avoid or discontinue FC in those instances is protecting their basic human rights, not violating them. Since the scientific community at large has rejected FC, you’ll never successfully prosecute someone for breaking law regarding abuse and neglect by denying FC so long as something like the Daubert standard applies. It’d be the equivalent of prosecuting guardians for denying a person with severe cognitive impairment communication via a spiritualist using a crystal ball where the proposed evidence that the person wants to communicate this way is in the ball. In the late 80’s and early 90’s FC was a controversial, unsubstantiated, relatively untested intervention that was purported to do extraordinary things. In the year 2008, it is well-tested and the results weren’t good.

    Forgetting how implausible it would be for everyone who has communicated via FC to be so gifted cognitively across a variety of subjects and disorders with no clinical evidence for such an ability, you don’t need a photographic memory to know the location of keys on a board without looking. However, you do need have established a spatial frame of reference, which you can’t remember if you don’t have in the first place. It is also worth noting that looking at the keyboard would be normative across such a variety of subjects and disorders, not unusual. It is, for instance, normative among users of AAC which have been shown effective. There was a period of time where FC proponents attempted to argue that ill-defined, extraordinary peripheral vision explained coherent typing of communicators when not looking at the board. Douglas Biklen, before stressing the importance of looking at the board, once invoked this ad hoc hypothesis frequently. As early as 93, I believe, he had abandoned this and actually was criticizing his critics for not pointing out that he stresses the importance of looking at the board. Among several reasons why it is not plausible, many instances of not looking at the board we are talking about exceed the capabilities of the human eye. It is much more likely that the hypothesis of facilitator control is correct in these conditions. To my knowledge FC training currently stresses the importance of looking at the board throughout typing.

  23. Interesting observation,although, a rather one sided view point do you not think? I presume that you do not have communication difficies and are therefore talking from the view point of an observer rather than someone who actually has had the experience of being unable to speak at the same level as other people.
    As a child when I was given many disability labels, e.g. “autistic, retarded, learning disabled, even unable to speak by some teachers or doctors (or by other teachers and doctors highly intelligent, not retarded, functioning normally, a miracle to
    have walked, high functioning movement, and speaks
    in sentences.) Odd do you not think that the
    medical and education professionals cannot agree
    the diagnosis of a child. Probably because half
    the time their notes were inaccurate (be assured
    I have seen them for myself and checked). “Does not speak” was a thought provoking comment when
    I actually had a vast vocabulary. Still it gave
    the medical profession a reason (retardation) to deny me
    physiotherapy and speech therapy on the grounds
    of disability and to deny me entry into main
    stream education.

    I was however segregated into special education against my will
    and told to repeat sentences back verbally, again
    against my will, because it was not what I wished
    to say and when I had to engage in pointless mundane
    activities, instead of being given a equal education. Interestingly enough no one actually saw it as a violation of my rights. Do you not feel that is strange that no one considers the
    view point of the child. That all rights of
    equality and consultation are denied. No one thought that I suffered
    considerable harm being labelled, segregated, and denied an equal education.

    At the age of sixteen I began
    to type independently (I finally gave up on my
    speech) and then I grabbed hold of my mothers fingers for support, because I was so
    fatigued (I have ataxic cp) and because I could not type fast enough to express my thoughts. Interestingly enough quite a few people who are seen as doing facilitated communication actually do that. So what you see as an infringement of their rights is actually incorrect. That slight support enabled
    me to type faster and for longer periods. (Apart from co-ordination difficulties and low muscle tone). I was
    able to speak in sentences, and read out loud what I typed before, as or after I had typed it.
    As are other people that type to communicate. For the first time in my life I was able to express myself as myself and not be
    demeaned because I was born with a disability. Have you any comprehension of what it is like
    to be denied equality by society?

    I also had Scotopic Sensitivity and because I could
    type I was able to acquire tinted lenses, which in
    turn brought the whole world into focus and calmed the environment. It is not a cure but it makes a vast difference. I have spent the last
    sixteen years typing, communicating. I joined College and studied at
    “A” level, and could have gone on to do a degree.
    I was said to be the brightest student that the
    Lecturer had ever taught. I won awards at College. I was treated with respect for my ability not penalised for being born with a disability. Within a period of
    months I went from being labelled low functioning
    to being recognised for my intelligence.

    Instead of doing a degree I decided however that it was was more important to
    HELP other people in the same situation as myself and I wrote the chapter for “Autism and the Myth of the Person Alone”. Quite an achievement for a
    person who was labelled retarded as a child do you not think? Do you not feel that society failed me, and the other children that I was at school with, and that the whole system failed me as a child? Do you not feel that children with
    disability labels deserve something better.
    I think people have the right to decide for themselves how they communicate as stated in the
    UN Article 21. It was written to protect people
    like myself and the countless other children
    that were in the same situation as myself. Do you feel it is right to deny children the right of
    communication because everytime you come into a site like this and comment on things you have no experience of that is what you are in fact doing?

    I have a question to ask you. When people have
    made grave errors of judgement over a long period of time, do you really think they are going to
    admit that they were wrong? Do you think that
    they apologise to the people concerned? No they
    waffle their way out of the situation or disappear
    very rapidly by handing in their resignations.

    You seem to live in a very safe world, where
    nothing or no one frightens you. Do you know
    what it is like to die in fear because you
    cannot speak the words that come into your mind.

    Do you know what it is like to shake in fear because you cannot speak.

    Do you know what it is
    like to cry for the children you are at school with because you cannot help them. I would think
    from your attitude towards humanity that the answer would be no. However do not worry because
    there are people out there like me who will stand
    up for what is right, for truth and social justice
    and equality.

    By the way recent research has proven that people who type
    look in quick glances at the keyboard before they hit a key.

    Richard

  24. Again, people do have a right to decide for themselves how they would like to communicate. However, if FC is not valid, then people aren’t actually consenting to using FC when that consent comes in the form of FC. Again, you are simply begging the question if you are presuming FC is valid to conclude that FC is appropriate for the people it is used for. *If* it were true that FC generally involved facilitator control of the produced messages, would you not agree that introducing it in individuals with little to no communication ability would be a violation of their rights?

    I am a professional in a field related to autism. I work with autistic individuals on a near daily basis. I have dedicated my life to helping people with communication impairments. I am offended when the real voice of people, whatever that may be, is ignored and is substituted by the unconscious writing of others. I am offended when FC proponents such as Biklen contribute to the general public’s misunderstanding of autism spectrum disorders when they attempt to justify FC or falsely speak through the a person with autism. I am in favor of all manner of alternative means of communication. Every individual has a right to a means of communicating that is best suited to their needs and abilities. I am only criticizing the use of FC because there is overwhelming evidence that, in at least a vast majority of cases, it does not yield messages produced by the communicator, but rather produces messages that are unwittingly authored by the facilitator in an example of “automatic writing” highly similar to what happens with Ouija boards. My lack of support of FC is no more a reflection of lack of care for people than my lack of support for homeopathic treatment of cancer is.

    ——–

    Incidentally, when I speak about FC, I am not talking about instances of physical support during typing due to fatigue among independent communicators. This is quite uncontraversial. I think this definition suffices to hone on the subject of discussion:

    “Facilitated Communication (FC) is a technique that allegedly allows communication by those who were previously unable to communicate by speech or signs due to autism, mental retardation, brain damage, or such diseases as cerebral palsy. The technique involves a facilitator who places her hand over that of the patient’s hand, arm or wrist, which is placed on a board or keyboard with letters, words or pictures. The patient is allegedly able to communicate through his or her hand to the hand of the facilitator which then is guided to a letter, word or picture, spelling out words or expressing complete thoughts. ”

    http://skepdic.com/facilcom.html

  25. It’s also worth noting that a person grabbing the hand of the facilitator should not be taken as synonymous with a desire to communicate via FC. The communicator just might be used to and even desire the physical interaction FC provides. One must be careful in the conclusions they draw.

  26. Except that, as far as FC goes, as in the book “Facilitated Communication Training” and other publications by people who actually teach people in the technique, is actually a communication technique (regardless of who uses it) that works in a certain way, starting with the things you describe but then fading back to support at the elbow, shoulder, etc. as much as possible, including to independence.

    I usually don’t need anything of the kind, but at a conference recently I was experiencing more motor problems than usual due to exhaustion. And I needed someone supporting my hand in order to type, until I recovered from said exhaustion. The way they did it matched what is done in FC, but they didn’t even know it was the same thing, and were shocked to be described that way. (They held my hand away from the keyboard and provided upward and backward pressure so that I could move my hand in more directions than I otherwise could.)

    I have problems with the term “FC” being used to describe anything and everything involving touch to help a person type (because that’s a pretty broad definition), but that is how it’s currently used.

    I also have problems with the idea that if you use the exact same technique on two different people, then it’s “FC” if and only if the person previously had no standard communication method.

    And I’d think the ways the FC field actually uses the terms on a regular basis (currently) would mean something even if you were arguing against it.

  27. Unfortunately, while the goal is independence, that is achieved in somewhere around next-to-no cases. Clinically verified instances of going from full dependence on FC for displaying unexpected literacy to independence where that literacy is intact are vanishingly small to nonexistent. (There are cases where a person is a sophisticated communicator with FC, and can type a few simple words and phrases without.) Unfortunately, unsubstantiated anecdotes of the development of independence (via FC) are common place in FC folklore. The claims vary wildly, even by the same people at different times, but the lit just isn’t there. And remember that FC has been used by thousands and thousands of people. This is the goal, but it doesn’t appear to be a achievable one in at least the vast majority of cases. This, again, is consistent with the facilitator control hypothesis.

    FC proponents propose that it works by subtlely correcting an apraxic disorder (motor planning difficulties) that prevents a person from reliably pointing. While this theory has not really been fleshed out and researched by FC proponents and has no real basis in contemporary understanding of autism spectrum disorders, one thing it is not is physical support for fatigue-related problems. It may look the same, but it is not. There are several studies that specifically demonstrate this.

    e.g.

    http://aut.sagepub.com/cgi/content/abstract/2/4/389

    The problem is that FC proponents use the term more broadly in a way that has the effect of leeching on the credibility of generally accepted methods of assisted communication. Forms of physical guidance for teaching typing and assist with motor fatigue are, again, uncontraversial. FC, as the term was initially was used, was specifically for people who cannot speak or have severely limited speech and people who cannot point independently to a typing board. FC was specifically a technique alleged to unlock literacy skills far exceeding the limited means an individual had. In short, FC is what Crossely did with Anne MacDonald et. al. When we talk about those amazing works written by children via FC, we are talking about that kind of FC. We can adopt the FC term in the braoder sense, but then we just have to be very careful about when we are talking about FC in the broad sense and when we are talking about the subset loosely defined above. When I talk about FC, I am referring to the latter.

  28. Jason,

    If you believe in equality, then that equality extends to ALL people with disabilities. They have equal rights and status in society and thus as you state “people do have a right to decide for themselves how they would like to communicate” and no one has the right to take that decision away from them. It is not your decision and it is not the decision of any member of society. If you deny people equality, it actually becomes a dictatorship where people are being dictated to without fair and due consultation. If you have not been involved in the movement of FC then I really do not feel that you are in a position to comment as to whether people are giving their consent or not because you were not present at the time in question – so you really have no idea at what level the individual’s consent was gained. You are making assumptions based on what you have read – research that is not your own but conducted and written by other people, who obviously to my mind have no grasp whatsoever of the issues involved. The knowledge therefore is not from your own understanding but quoted back from people who have been engaged in small research studies.

    But it really is not your decision to make on behalf of other people. Do I believe that people’s rights are being violated by giving them the opportunity to participate in typing to communicate with support. Well obviously not. I accord them the same rights, dignity and freedom of decision that I accord myself. People have sufficient intelligence to make an informed decision on their own behalf. The fact that society have awarded them disability labels is the mistake of society and society should bear the responsibility. As I stated yesterday people’s rights are being violated because they are being denied equality. They have been segregated and denied an equal education. That is violation of people’s rights. People with hearing difficulties were once said to be ‘retarded’ and refused the right to sign, people with cp where shut away in institutions and people with Downs (which is a disability label and I cannot believe that it is still in existence) were stated to be retarded. Today society has moved on and the grave errors of judgement of the past have been acknowledged to some extent. People with the disability label of ‘Downs’ for instance are working in the community and studying in higher education, although of course they also suffer violation of their human rights. As do for many people with the label of autism. ME twenty years ago was said to be ‘yuppie flu’, and people with the condition were refused the help they required and because of that many became wheelchair or bed bound but today it has been acknowledged that it is a recognised condition. All on the say of people who were the recognised experts in the field at the time. People once believed the earth was flat but we have moved on and become more enlightened. The people who could have proved that facilitated communication worked have had their funding withdrawn, their communicators take away and they are shut away in homes, to live their lives in silence. Do you think that is not a violation of their rights as individuals? How do you as a society live with that decision based on ignorance and discrimination. Who is standing up for the rights of these people? The very people that are shouted down becomes they will not admit to something which they know is incorrect.

    As I understand it there are recognised guidelines for facilitated communication but I actually type the same as any other one finger typist, just from key to key. It really annoys me that I cannot type with ten fingers but I just do not have the fine motor skills and co-ordination necessary. I wonder if I had received speech therapy and physiotherapy as a child in line with recommendations for people with cp whether the situation would have been different. Would I have acquired more fluent spoken language? Would my hands be so un-coordinated? Who knows because it was decided I was not worth the funding? Much along the lines of taking away funding to enable people to communicate by typing – who knows what could have been? But I am quite sure all the research on people with ‘disability labels’ does not take into account these facts – no one owns up the fact of funding being denied on grounds of disability. Has anyone asked the people concerned what they think? From the many voices that are now speaking out I think it is quite obvious that they feel they have been denied equal rights. Do you think people were happy to have had their communicators taken away or did society feel it had the right to make the decision on their behalf? But they were evidently not accorded that right because they are condemned by society as unable to think for themselves. What you do not seem to realise is that many people (like myself ) discovered supported typing for themselves, never having heard of facilitated communication. I had never heard of facilitated communication and when someone said that is facilitated communication I do not think I even paid much attention at the time because all I cared about was the fact that I could communicate. It was only later that I heard about the plight of other people who were being denied the opportunity to communicate and because of my experience as a child it makes me really angry on their behalf. Because I had ataxic cerebral palsy my mother supported my hand to help me with many things as a child, including teaching me to write. As is the practice in many schools.I then went on to write independently. I recommended that you read “Autism and the Myth of the Person Alone” you would realise that all the people in the book type independently.

    Do you have any comprehension of what it is like to be ‘labelled’ retarded when you are not, because of an inability to communicate fluently? I was sixteen before I gained communication. The two schools I attended had every opportunity of addressing the issues and to my mind they failed miserably. They however cited themselves as schools of excellence. I actually would not fit into the little box they tried to fit me in – the one labelled ‘disability’. When I began to type and I went on to College, I realised that everything I had ever thought about myself in special education was a lie, a half truth. And I wonder what kind of society does this to children. Oh yes give children with disabilities sympathy but do not accord them equality.

    I attended a conference on ‘autism’ some years back (when I was maybe sixteen or seventeen) and I sat in the audience and I asked a question, typing on my lightwriter. The parents of children around me began to cry, because I was communicating and a student in the audience stated she had to go back and rewrite her thesis. I was once one of those people you are condemning to a life of silence because you do not consider the issues. And if you wish for my forgiveness or acceptance you will not receive it. I have to reconcile myself with the past – as do all of us that have been denied equality on grounds of disability. My language was all over the place, even though I had speech, but I was determined that no one was ever going to demean me and humiliate me again. No one was going to label me retarded and destroy my life. So I have typed for thousands and thousands of hours until I could communicate on par with other people. And no one can take that away from me because I know I can communicate and therefore I know that others have the same potential to communicate as myself. And if people do not take a stand against social injustice what hope do any of us have as human beings.

    I think rather than ‘Ouija boards’ it has become a witch hunt. And where do the children stand in this witch hunt? You state “every individual has a right to a means of communicating that is best suited to their needs and abilities” and who is to decide their needs and abilities? Who will make that choice on behalf of a child? The ‘experts’ who think they know best – people who have their heads buried in the past; the same ones that have denied children equal rights and an equal education. Do you not think that denying children speech therapy and physiotherapy is rather along the same lines as denying them the opportunity of communicating through typing? Because according to the ‘experts’ I was retarded. I told myself as a child that I was not retarded and when I typed on a canon communicator (because I had difficulty with my hands and co-ordination on a normal keyboard) the first words I typed – independently – were “I am not retarded”. At the schools I attended their was no funding to buy canon communicators or provide people with the equipment to enable them to type. Insufficient staffing levels. Low expectations. No structured language programs. Insufficient funding to employ speech therapists. The teachers muddled their way through one lesson to the next with little thought to the individual child. Little in the way of reading materials or teaching equipment that was age appropriate. Do you think as a child you would have liked to have been in my situation? Would you have enjoyed reading a book meant for an infant when you were a teenager? Or am I different to you? You are accorded every right and people with disabilities are denied their rights.

    You state that some people with cp cannot type to communicate independently. Do you not think that is rather like asking a blind person to see or a deaf person to hear? You are asking them to do something that is impossible. And yet you sit in judgement and condemn them for it.

    I was given the same disability labels “autism, mental retardation, cerebral palsy, low functioning, learning difficulties. And no one has apologised to me at any stage for taking my rights away from me as a child to an equal status in society and an equal education. And as I see it the children and young adults that I was at school with were in the same situation as myself. They were labelled and denied equality.

    A person who is typing that takes hold of someone’s fingers for support is not ‘grabbing their hand’. And the fact that you make this statement demonstrates that you have no knowledge of the situation.

    And yes, the goal for the people who are involved in the work of facilitated communication and those that condemn it is independence BUT the goal for the people who are typing is to COMMUNICATE at a level that awards them self expression, dignity and recognition. All the research projects cannot take communication away from a person – only the opportunity to express themselves as people. Odd how people refuse people the right of communication when they have it themselves. I wonder how they would feel if the boot were on the other foot. Do you think they would want someone to support their hand to help them type a few words. A disability label is a disability label awarded by a society that has no concept of absolute equality and who begrudgingly extend us the same rights as they take for granted. And denying someone the right to communicate is just that and no politically correct wording can change the issues.

    Richard

  29. How have you established a person’s consent to use FC when they lack the means to communicate consent without FC without using FC? Consent is typically obtained via guardians to my knowledge. Not everyone in our society has sufficient ability to meaningfully give informed consent. This is why our system has guardians for those people. I have seen people argue they have obtained consent from the communicator using FC, but that is simply begging the question. I just obtained consent from you to buy me a boat. I obtained this from mental messages you sent me via a Ouija board. Did I really just obtain your consent?

    People with Down’s syndrome often have mental retardation to varying degrees. There are people who have Down’s who have normal or above average intelligence, but they are exceptional rather than normative. The intelligence curve is skewed to the left among the Down’s population. I’m not sure why you believe this is not the case, but it is. FC proponents tend to downplay the extent of MR/DD in the population. If I were to guess, I suspect this comes from the misleading and flat incorrect lore among FC proponents that cognitively disabled individuals have normal cognitive abilities and are simply “trapped” by their inability to express them. That’s not to say this does not occur (it does), but sometimes people just really are impaired cognitively. And it does a disservice to them to refuse to understand and work with that. My heart breaks for people who are disabled but are surrounded by people who speak through them with FC and write falsely that they are not” retarded”. Such wishful delusions, however well-intentioned, only hurt our ability to aide those individuals.

    Again, you simply are presuming FC is effective than stating people have a right to effective means of communication. The problem, again, is that hundreds of studies on thousands of subjects in a variety of contexts and conditions for varying lengths of time has established that FC does not yield verifiable communication and is demonstrably being written unconsciously by the facilitators in the vast majority of cases. The alleged evidence in favor of valid FC is tepid and often produced with transparently poor methods for reaching such a conclusion. You won’t even acknowledge that if – hypothetically – FC was not valid then its use is a violation of rights.

    Perhaps the phrase “grabbing their hand” was too crude for you, but I was describing direct observations made by myself. I work in a field where FC comes up from time to time. Like some, I tend to just observe. Others excuse themselves. However, yes, what specifically is grabbed and how they do it varies from person to person and can be described with more nuance. That said, I do not believe I was incorrect when I described communicators grabbing facilitator’s hands and bringing them over a letter board.

    Finally, I was talking about independence specifically because the transition to independence – as in going from little to no demonstrated independent literacy skills to typing with any physical aide or cueing – was being brought up as evidence of the efficacy of FC. That it does not actually occur, at least in the vast majority of cases, is kind of relevant to that point don’t you think?

    Speaking of funding, how sad would it be if millions of dollars were wasted on FC that could have been spent on other, more effective interventions? We live in a world of finite resources. The money has to come from somewhere and it has to be distributed in a fair manner across many people. If FC were not valid in many instances in which it is being used, can you not see how sinking money and time into it hurt people by wasting resources? With all due respect, your posts carry a theme of assuming FC is valid for purposes of discussion when that is the very point in dispute. In the book I mentioned previously, there is an essay, “How Shall Facilitated Communication Be Judged? Facilitated Communication and the Legal System” by Ken Margolin. It is a bit dated, but it explores the rights issues you are bringing up in depth. I think it would be a valuable resource to you, if only so you can think about the legal implications of FC not being valid *if* it is not.

  30. I should be careful to note that when I talk about hundreds of studies, I am referring to individual studies within research papers. The actual amount of papers published in peer-reviewed journals that are about such studies is in the neighborhood of a hundred or so.

  31. As someone who both is interested in disability rights and also falls in to the much-maligned category of (future) “expert” who “thinks they know best,” both sides of this argument are very frustrating to me.

    I agree with Jason S. that the studies indicating that for some individuals, FC is a sham are a matter of concern. This is a concern because it represents a possible grave human rights violation, if people are indeed being used as “Ouija boards.” Evidence suggests that this is happening to at least some people.

    On the other hand, the reference to “the misleading and flat incorrect lore among FC proponents that cognitively disabled individuals have normal cognitive abilities and are simply “trapped” by their inability to express them” is rediculous. I think it’s very clear to readers of this blog that at least some cognitively disabled people are highly capable of writing articulately when they recieve proper accomodations. Amanda’s writing is an obvious example. When she did not have access to proper communication assistance, she did appear to others to lack any ability to communicate.

    What’s needed is a better way to both provide assistance to people who benefit from it, and avoid situations where it is used and there is no actual communicator input taking place. Science certainly has a place in this, but rigid, ableist proclamations about the inability of anyone who appears “mentally retarded” to communicate do not.

  32. I can only re-iterate that if you were not present when people gave their consent to type to communicate then you have no experience of the situation and are therefore not in a position to comment on the manner that consent was given. You certainly, from your comments have not been witnesses to hundreds or thousands of people giving their consent. And I therefore wonder why you are so adamant in your opinion when obviously there are people that have worked in the area of facilitated communication who have more experience in the field than yourself.

    I am rather concerned by your description of a letter board as being a Ouija board. I have never actually seen a Ouija however I have seen a letter board – which are used by people who are unable to engage in verbal conversation to point to letters on the board to communicate. People spell out words and sentences in an endeavour to communicate their thoughts. Whilst letter boards are very basic many people do not have any funding to buy the more expensive communicators which is really a great shame. I once had a session with a medical student who had obviously never seen a communication devise before (a lightwriter – which is a small keyboard) and I actually found his attitude rather amusing if somewhat disrespectful in that his eyes nearly popped out of his head. However he was completely oblivious to my reaction to his sheer ignorance at the fact that I typed to communicate. Perhaps he thought my communication devise was an OuijaI board. I will have to bear it in mind for future reference! I actually thought that there was no point my being present on the occasion in question as he did not seem able to actually direct his questions at me only at my parents. He actually seemed to have extreme difficulty making eye contact with me. Rather odd do you not think.

    I presume intelligence of all people with disability labels because to do anything less would be to show them disrespect. I do not assume that people who have difficulties communicating are retarded. I actually do not recognise the word ‘retardation’ – it is a disability label. I have vast experience of how easily these assumptions are made by the establishment based on their own narrow perceptions. Thirty years in fact. They do not quite seem to grasp the fact that people with disability labels are of the same intelligence as themselves. They actually spend so much time
    patronising us that they miss the point entirely.

    I wonder if you are familiar with the following Articles:

    United Nations: Article 1. “All human beings are born free and equal in dignity and rights”. Article 2, Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind. Article 3. Everyone has the right to life, liberty and security of person.Article 12. No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence..Article 19. Everyone has the right to freedom of opinion and expression; this right includes freedom to hold opinions without interference and to seek, receive and impart information and ideas through any media.

    I do realise that some people do not feel that people with disability labels deserve the same respect and rights but I think you will find that the Articles were intended to address everyone in an equal society regardless of whether people accept their means of communication.

    I can only re-iterate that if you have only ‘observed’ facilitated communication you really are not in a position to comment. Perhaps you only see people from the ‘outside’ you observe them from your own perspective and therefore perhaps you are not actually in a position to comment on their intelligence levels. I do not think any of the points you have made are therefore of relevance because you do not seem to have the necessary experience to make an informed decision. If people have been segregated and denied an education they would not be able to function at the same level as their peers due to the fact that have been denied the same social experiences. If children have communication difficulties that are not addressed how do you expect them to function on par with their peers?

    You think that it would be sad to spend millions of dollars on enabling people to communicate how ironic when billions of American dollars have been wasted on fighting a war that so many people in the USA do not support.

    I can only re-iterate yes I presume competence. It would really go against the grain with me to do anything less.

    “Shall we cry for humanity
    As we walk side by side
    For that moment in time
    When wrongs were not rectified”

    Copyright Richard Attfield (2007)

    Richard

  33. Perhaps there isn’t “lit” around to support the use of facilitated communication as a genuine means of communication……..because it just wasn’t published for whatever reason. Maybe it was just dismissed as a lot of hooey by scholarly journals of psychology or autism treatments or something like that. But those scholarly journals are all edited and “run” (for lack of a better term) by non-autistic people who call themselves experts on autism. How would they know? Can they read minds of autistics by looking at their behavior and magically determine “aha! This person is clearly not thinking in his or her mind what the fingers are pointing to on the typing machine………..assisted by another……”

    No. No one can read another person’s mind……..

    Take another look at those peer-reviewed research papers……..this time with the idea that MAYBE, just maybe………those scholars who wrote them are just guessing, because they can’t really know for sure……….as I said before, no one can read another person’s mind and therefore know for a fact that the communication that is being done with assistance is really the work of the assistant.

    TI

  34. Jason, actually all the research, whether it ends up against or has been with smallish numbers, although the largest study, one that involved 43 individuals, is Cardinal et al., study supports and demonstrates authorship of people using facilitation. Richard

  35. Rachel: You wrote,

    When she did not have access to proper communication assistance, she did appear to others to lack any ability to communicate.

    Well, at that point, I could appear to others a lot of things:

    1. Perfectly able to communicate. (While actually struggling a great deal to communicate what I could communicate.)

    2. Perfectly able to communicate. (While actually saying a lot of stuff that had no relevance to what I was thinking, due to the way speech and language comprehension came online backwards.)

    3. Able to communicate but unable to understand things and/or out of touch with reality. (While, again, actually able to say very little of what I was really thinking.)

    4. Able to communicate but refusing to. (During times when I was unable to speak words at all.)

    5. Unable to communicate, but not having anything to communicate.

    6. Unable to communicate, but wanting to communicate something.

    7. Able to communicate, but being incomprehensible (and not understanding the world, obviously, etc).

    8. Unwilling to communicate.

    9. Both unable and unwilling to communicate.

    Etc.

    It all depended on who and when you’re talking about. My communication and speech skills have varied a lot over my lifetime.

    I can say, though, that a lot of the time if I am without communication equipment these days, people assume I am unable to communicate, and/or have nothing of importance to communicate.

    With the communication device, I once had a bizarre altercation with the cops where I was clearly (to anyone with a clue) not able to move very well, and for awhile I didn’t move at all (during which I was presumed to have nothing to say), then moved very slowly to type (during which they reversed that presumption), then got exhausted and couldn’t move anymore, and at that point the cops stated into their radio that I had started communicating but refused to continue. (I think it would have been obvious even to most untrained people that I was getting exhausted, because I was moving slower and slower before freezing again.)

  36. Some food for thought:

    How To Teach.

    I know and have met the woman who wrote it, she’s an online friend that I’ve met offline and communicated with in both print and assorted autistic body-language stuff. She’s definitely legitimate, and her story of how she actually ended up being educated in any way is important: Nobody bothered teaching her until she was paralyzed by something that can also affect non-disabled people, at which point suddenly she was taught in the same way a student with that particular condition would be taught.

    If people had assumed she didn’t know anything and couldn’t consent… things would have worked out a lot different for her.

    Her daughter, who has the same genetic syndrome causing autism that she has, has more severe motor impairments than her, and does use facilitated communication. But they have very different experiences of the world in some ways, and sometimes very different opinions of things. And she has proven her daughter’s typing is her own in a lot of different ways.

  37. I have never actually seen a Ouija however I have seen a letter board – which are used by people who are unable to engage in verbal conversation to point to letters on the board to communicate.

    I have– it’s a flat board covered with all the letters of the alphabet, numbers from 1 to 10, and the words “yes,” “no” and “goodbye.” It’s sold as a novelty item, but some people report that when they put their hand on a plastic pointer that comes with the board, it seems to move on its own, spelling out words, sentences, etc. Some people think it’s a form of communication with spirits (after the tradition of automatic writing), while the most common skeptical explanation is that the person using it is unconsciously moving the pointer by themselves and all the messages that come from it are produced by the person’s “unconscious” mind.

    Personally, I have no idea how it actually is supposed to work, because I’ve never been able to get one to work for me. My hand doesn’t move on its own. I’m not saying that spirit communication is necessarily a better explanation, but I’m not sure either if there’s actually a discrete thing called “the unconscious mind” which can produce complete and totally coherent writing relevant to a given subject while the person unconsciously doing it is in a completely awake and conscious state. At least, I’ve never been able to produce anything coherent while doing any of the things that are supposed to make your unconscious mind take over and move parts of your body to produce things which appear to be coming from somewhere besides you. They never worked for me. I doubt I’d be able to do it while holding the hand of a person who was typing any more than I could do it on a Ouija board or similar. I’m not saying that it never happens, just that I’m pretty sure there must be more people like myself, who can’t “unconsciously” produce writing and not be aware on some level that they’re doing it.

  38. Has anyone made an arguments against facilitated communications bingo? “It’s a sham!” and anything involving Ouija boards seem to be stock phrases. To be honest, I did a double take upon seeing the latter statement this time. Oy. Anyway, I’m sure there’s more material out there, but it’s not something I’m exposed to routinely and I don’t much feel like going out and looking for it.

  39. I think Cal Montgomery said at one point that if anyone knows of an old Ouija board she could use as a communication board for a joke, she’d love to know.

  40. “I can say, though, that a lot of the time if I am without communication equipment these days, people assume I am unable to communicate, and/or have nothing of importance to communicate.”

    I think one of the ablist overtones to this discussion has been the assumption on the part of some readers of the studies Jason mentioned that if someone is shown to be not communicating (i.e., the output from FC is coming from their facilitator), then they are not only unable to communicate but have nothing to say. Thus, arguments against FC get equated with the position that people who use it are empty shells. Far more disturbing to me is the idea that (some) people who are using FC are not communicating, because the information is all coming from the facilitator, but they have many things that they would really like to be communicating (such as for starters, “No, that’s not right, that wasn’t what I wanted to say!”).

    You’re right though, that assuming FC isn’t working isn’t a viable solution. That would cause some people who may be benefitting from it to be rendered nonpersons when they may not have. Seems to me like some kind of rational, balanced approach where it’s tried, and tested every now and then to see if it’s working (maybe using some of the methods that have been used in the empirical studies, such as having each party look at a different picture) makes the most sense.

  41. Rachel: The main problem with that sort of thing, is… think about it as if you were the person being tested.

    One thing Sharisa wrote once was:

    I have already jumped through countless fiery hoops to get to where I am today. I am honestly sick and tired of being treated as a human guinea pig or lab rat … it is a clear violation of my human rights and one that MUST stop NOW!!!! What exactly will I be asked to prove next – that I am actually HUMAN????!!!! YEESH!!!!

    After awhile it becomes an invasion.

    I’ve found even the process of going over my “symptoms” (as “symptoms” in the DSM-IV and so forth) with non-hostile people, to be somewhat degrading and invasive, even if I initiated the conversation.

    And to go through that process knowing that a lot of your future is riding on it, is even worse.

    And that’s just, proving what sort of person you are.

    Imagine when it’s, proving that you have thoughts. Proving that you’re not an empty shell. Proving that you can want anything or feel anything or think anything.

    Then it’s far worse.

    I do know what it’s like to have professionals believed over what you say.

    And what people with the advantages of not having to do this don’t realize… they say that a test, or a question, or something is “simple”.

    It’s never “simple” when that much rides on it, and it’s never “simple” when you’re a “non-person” sort of person to begin with, whether it’s testing-for-category or testing-for-personhood. I have refused to answer questions from people before that amount to proving my humanity or my ability to know anything.

    And… yeah. Not everyone is going to want to go through such testing, and a lot of people are going to find it incredibly invasive and degrading.

  42. The Cardinal Study suffers from significant methodological problems, as was discussed in the metanalysis I linked above. If need be, I can discuss it in a little detail if you’d like. I am familiar with the study.

    Rachel –

    As I expressed in the comments you were referring to, there are instances in which people who are diagnosed with mental retardation are simply “trapped” by communication impairments that lead to a mistaken impression. I’m saying that FC proponents tend to drastically overstate how frequently this occurs because the explanation for why FC works in autistics and others.

    For lack of a better term, FC lore tends to drastically underestimate the prevalence of MR in the population. It is not uncommon for FC advocates to argue that mental retardation in autism barely exists or does not exist at all. I would point out that I think this is quite incorrect and certain is in opposition to contemporary understanding of autism.

    The comparison to the Ouija board is common for two reasons. First, in at least most cases, FC seems to operate via the ideomotor effect just as Ouija board does. Second, most people understand that Ouija boards do not involve communication from spirits and this should help them just get a gasp on what is being said about FC.

  43. Jason: With regards to MR (and I won’t get into how much the concept of MR and IQ is misunderstood by most professionals), current research in autism is not saying that a huge amount of autistic people have it. Current research, from many sources and in many ways, is saying that far fewer autistic people have it than previously believed. Go talk to Michelle Dawson about it (she has message boards online). She doesn’t support FC, but she does research on intellectual skills in autistic people, and how and why they are grossly underestimated in most of us. (I also think they’re grossly underestimated in non-autistic people diagnosed with MR, but that’s another story.)

  44. On the subject of MR in the presence of other atypical neurology… it surprised me to learn that any psychologist would attempt to test an autistic person, or someone with a significant movement or communication disorder, with any of the most popular standardized intelligence tests, and then think that they could use that to make valid conclusions about the person’s general intellectual ability. The tests weren’t designed or normed for that and it’s just plain unethical.

  45. Also, regardless of what “MR” might signify in any particular person, what it most certainly does not signify is, “This person’s brain doesn’t work at all”. It also doesn’t signify, “This person is not sentient”. It bugs me how the whole MR thing tends to get people totally written off.

    (And this comment isn’t meant to imply anything about FC, by the way — regardless of whether FC “works” in some cases, or in any cases, the fact still remains that all people who aren’t dead or totally unconscious have thoughts and inner lives.)

    And another thing: in reading through this thread, it occurred to me that (again, regardless of whether or not FC ever “works”) some people have been able to escape institutionalization, and just generally live lives in which they’re treated with more respect, as a result of having been introduced to FC.

    Now, I’m not saying that the “ends justify the means” or anything like that — I am not in any way, shape, or form suggesting that it doesn’t matter if people are having words falsely attributed to them via FC techniques (and I am also not saying that this is always necessarily the case — I’m just saying it would be wrong if that were the case) so long as they get better lives as a result.

    What I am suggesting is that there’s something fishy about the “some people naturally belong in institutions because they can’t take care of themselves, are self-injurious, have toileting difficulties, etc.” argument when you consider that some people have been de-institutionalized just because someone else has decided that they’ve “proven” their personhood enough through their communications. People don’t magically get new adaptive or motor skills as a result of having FC, so all I can guess is that keeping people in institutions has very little to do with how “difficult to care for” they supposedly are, and a lot to do with dehumanizing attitudes.

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