Two sides of the facilitated communication debate

Doctors said my son’s brain was damaged — but he was bright | Life and style | The Guardian

This article is by Rahila Gupta whose son, who died in 2002, had cerebral palsy and had extreme difficulty communicating, but was not mentally impaired. She spent much time during his life trying to persuade professionals that he was in fact not “retarded” and that his communications were genuine as they were facilitated, i.e. done with someone holding his hand:

I met a speech therapist, Anne Emerson, who used a system called facilitated communication, the same system that Rom Houben is using to communicate. We developed a quick method of talking to Nihal, giving him choices, getting him to touch our left or right hands with his face, each hand being designated as “yes” or “no”, “hot” or “cold”. Anne wasn’t interested in testing Nihal. He immediately warmed to her. At the age of eight, he began to use facilitated communication. An alphabet chart would be placed before him and if you held his hand he would spell out words, sentences, paragraphs. He would tell surreal jokes and let us enter into his world of warped morality. Anne showed him pictures of old women being mugged by thieves and he laughed hysterically as he indicated, no the thief should not be sent to prison. And, wonder of all wonders, it enabled him to do some school work.

My heart sinks when I see the online debates on Rom’s communication: that FC has been discredited, that he’s not looking at the board, that his eyes are shut, that it is his personal assistant who is guiding his hand – everything that was flung in Nihal’s face. …

We ended up at the Special Educational Needs Tribunal. We won, on the basis of his ability, even though the headteacher of his special school had been wheeled out by the LEA to make disparaging remarks about Nihal. We read out a poem of Nihal’s, The Bluebell Sings Poetry, which had received a commendation in the WH Smith young writers’ competition in 1996. Two separate people had facilitated it, one of whom had quite a basic education and no idea of poetry and yet there is a symmetry between the first four lines and the last five. … The weekend before he wrote it, we had gone for a walk in Epping Forest and stopped to admire a purple haze of bluebells, unknown to his facilitators.

When I tweeted the story of Rom Houben, the Belgian man who lay paralysed for 23 years until the doctors had his brain scanned and found that his brain was actually working normally, someone tweeted me back saying that it might not be him communicating. Ben Goldacre wrote this article for today’s paper, noting that no studies into FC demonstrate that it actually works, i.e. that the communication is actually coming from the disabled person and not the facilitator. I must say that the alternative explanation of an ideomotor or “Clever Hans effect” seem somewhat far-fetched; why don’t they just say that the facilitator is making up the words him- or herself? Still, a reasonable test might be to get the disabled person to dictate the same original text to two separate facilitators.

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