Unreliable speech? “So they tell me, and they certainly speak truth, for my Lady says the same”

Cross-posted at FacilitatedCommunication.org.

The Uniquely Human podcasts I blogged about below have reminded me of one of my favorite sections from C.S. Lewis’s Narnia series. This section, from the Silver Chair, features Prince Rilian, a resident of the Underworld, explaining to his visitors how his entire life as he knows it is thanks to the good graces of an “all but heavenly Queen”:

I know nothing of who I was and whence I came into this Dark World. I remember no time when I was not dwelling, as now, at the court of this all but heavenly Queen; but my thought is that she saved me from some evil enchantment and brought me hither of her exceeding bounty…

Rilian remains utterly dependent on this Queen because of a spell that controls his body:

[E]ven now I am bound by a spell, from which my Lady alone can free me.  Every night there comes an hour when my mind is most horribly changed and, after my mind, my body…. [Or] So they tell me, and they certainly speak truth, for my Lady says the same.

But the Queen promises Rilian that eventually he will gain independence:

Now the queen’s majesty knows by her art that I shall be freed from this enchantment once she has made me king of a land in the Overworld and sets a crown upon my head.

For now, however, night approaches and, as protection against the control inflicted every night over his body by the enchantment:

They will come in presently and bind me hand and foot to yonder chair. Alas, so it must be: for in my fury, they tell me, I would destroy all that I could reach.

Tonight, unfortunately, the Queen is away, but:

By custom, none but the Queen herself remains with me in my evil hour. Such is her tender care for my honor that she would not willingly suffer any ears but her own to hear the words I utter in that frenzy.

I can no longer read this passage without thinking of the victims of facilitated communication, particularly Spelling to Communicate (S2C) and Rapid Prompting Method (RPM). These growing numbers of vulnerable individuals, granted little control over their lives, are often boxed into chairs in corners, where they type out messages controlled by their facilitators. Some messages are worshipful, praising both the facilitators and the “inventors” of R2C/RPM. Other messages are dismissive, explaining why their own actual (spoken or independently typed) words and body language cannot be trusted. Others are hopeful, alluding to the promise of eventual freedom from facilitator control. The promise, perhaps, of being able and allowed to type without their facilitators hovering within tactile, visual, and/or auditory cueing range? If so, a promise that, according to all the available evidence, remains elusive.

Nor can I read what happens next in The Silver Chair without thinking of the urgent need for observers to figure out which words to believe. Do we believe these words, which occur before the purported enchantment begins?

While the fit is upon me, it well may well be that I shall beg and implore you, with entreaties and threatenings, to loosen my bonds. They say I do… But do not listen to me. Harden your hearts and stop your ears…

Or do we believe these words, which occur after the purported enchantment is in full swing:

Oh, have mercy. Let me out, let me go back… Quick! I am sane now. Every night I am sane. If I could get out of this enchanted chair, it would last.

Which of Rilian’s words are his own, and which are controlled by enchantment? Is the Queen really a savior… or might she be an opportunistic witch? For those who want to re(visit) the rest of the scene, I won’t spoil the magic of uncertainty.

But, out in the real world, the question of which of a person’s apparent or purported messages to believe also arises, especially in FC—indeed, it arises repeatedly. It arises, for example, in one of the interviews with S2C “inventor” Elizabeth Vosseller on the Uniquely Human podcast that I wrote about earlier. In this audio-only interview, we hear Vosseller discussing how one of her clients sometimes says “home” when actually “he’s perfectly happy” and doesn’t want to go home. This client is present at the interview, and we hear him say “January,” and, repeatedly, “And then we’ll go.” Following these utterances we hear Vosseller say “That’s my unreliable mouth” and “speech overflow,” as she apparently reads out what her client purportedly typed by way of dismissive commentary about his spoken words. We also hear Vosseller say, again purportedly quoting her client’s facilitated typing, “It is really frustrating when I blurt out something that I don’t mean or want.”

The question of what to believe also arises in the infamous “No More! No More!” scene from the pro-FC documentary The Reason I Jump. Here the S2C victim repeatedly calls out “No more! No More!”, seemingly in reference to being prompted by her facilitating mother to type an entirely different message on the letterboard: namely, the message that she and the person she purportedly has a romantic interest in could, thanks to S2C, “finally tell each other how we felt.”

Indeed, an entire article is devoted to the question of which messages to believe when some are facilitated and some are not: a 2009 article by FC proponents Kasa-Hendrickson, Broderick, and Hanson entitled “Sorting our speech: Understanding multiple methods of communication for persons with autism and other developmental disabilities.” The authors open with the following scene, featuring a long-time victim of facilitated communication:

Go home!” Sue shouted. I had just arrived at her home and this apparent command to leave confused me. Did she want me to leave? Did she want to go? I decided to move forward with the conversation saying, “Good to see you Sue. How is school going?” Sue reached for her mother’s arm and tapped it quickly. Sue’s mother pulled out a small electronic keyboard and held it in front of Sue. Sue pointed her finger and, punching one letter at a time, typed out, “Echolalia at its worst. It is very embarrassing. I want you to stay.

So which messages do we believe: the spoken or the facilitated?

For FC proponents, the answer is clear. Whenever there’s a conflict between spoken and facilitated communication, we should go with the latter. The speech of people who are subjected to FC (which includes not just those with autism, but also those with other impairments that affect speech,  like Down Syndrome) is purportedly unreliable—whether because of “speech overflow,” “dysregulation,” “automatic echolalia,” “apraxia,” “dyspraxia”, or some combination thereof. When challenged about the absence of evidence for these unreliable-speech-making conditions as justifications for FC, proponents add that the facilitated individuals tell us that their speech can’t be trusted—just like Prince Rilian from The Silver Chair.

As Kasa-Hendrickson et al. report, for example:

Each of the participants [in their study] had the ability to produce some spoken language prior to their being introduced to FC, yet none would describe their speech as communicative.

In particular, Kasa-Hendrickson et al.  cite the following from their participants:

• Attributed to Frank: “I am almost never able to say what I want through talking. but I have to keep going with the typing to really be able to say what I want.”

• Attributed to Lucy: “I am feeling an urge to say the word when I see it. The urge is because I am different when I type. I have more confidence.”

• Attributed to Jamie: “In class today I was anxious and I was typing out an English assignment and I kept saying, “Mickey turns into Frankenstein.” But I was not typing that. I was typing about Edgar Allan Poe, but all of a sudden out leapt, “Mickey turns into Frankenstein.” I call these words of annoyance.

That is, like so many other FC-proponents, Kasa-Hendrickson et al. are certain that the typed messages are the reliable ones because, after all, that’s what the messages themselves tell us. Just like the messages produced by Prince Rilian—before he was strapped into his silver chair.

Based on this, Kasa-Hendrickson et al. go on to suggest, not only should we distrust speech that conflicts with FC, but we should also avoid any engagement with such speech because we don’t want to encourage it. Speech that doesn’t conflict with FC, on the other hand, can be encouraged and even “scaffolded.” Scaffolding includes noncontroversial tools like “routine social scripts” and “supported conversation”; for Kasa-Hendrickson et al., it also includes FC. That is, scaffolding is also afoot in cases of facilitated typing in which the FCed individuals say the letters while or after they type them or read an entire message once it’s been typed out. As evidence of how helpful this is, Kasa-Hendrickson et al. once again cite FCed messages:

• Attributed to Lucy: “I really think that seeing the words when I typed them made it easy to say the words and I feel that the typed words are more important that I should try to say them so I am heard.””

• In reference to Nathan: “Nathan Guzman types independently, and speaks each word as he types it out on his keyboard. Nathan comments on the difficulty of speaking aloud, and on the supportive nature of reading his own typing out loud.”

We should note here that Kasa-Hendrickson et al. use the word “independent” in the specialized sense favored by FC promoters and practitioners: for them, “independent” only means independent of a facilitator’s continuous physical contact, not independent of the facilitator’s physical proximity. Because it doesn’t rule out auditory and visual cueing, “independent” in this sense does not entail actual communicative independence.

So how do we decide which messages to believe when speech and facilitated communication conflict? FC believers, of course, say we should believe the FC: after all, that’s what the FCed messages tell us we should do.

But the rest of us shouldn’t get bound up in this circular enchantment. Instead, we should see all this for what it actually is, namely, a choice between:

1. Something that is highly immune to cuing by a nearby facilitator (speech)

2. Something that is highly susceptible to it (index finger typing)

No matter how insistently the index-finger-plus-hovering-facilitator messages seem, as C.S. Lewis might put it, to “beg and implore us, with entreaties and threatenings, not to listen to the speech and to harden our hearts and stop our ears,” common sense and basic decency tell us to do the exact opposite.

….Unless and until a reliable, enchantment-free, message-passing experiment tells us otherwise.

REFERENCES:

Kasa-Hendrickson, C., Broderick, A., & Hanson, D. (2009). Sorting our speech: Understanding multiple methods of communication for persons with autism and other developmental disabilities, Journal of Developmental Processes, 4(2), 116-133.

Lewis, C.S. (1953). The Silver Chair. Geoffrey Bles.