ADDENDUM::The Strange Case of Anna Stubblefield - The New York Times

‘‘It just didn’t fit with anything that I or anybody had ever seen before,’’ Shane says now. ‘‘Either she saw something that nobody saw, or there was something wrong with me, in that I was dismissing people as being retarded when all you had to do was just believe that they could do it.’’ He snorted as he recalled Crossley’s presentation: ‘‘We were sitting in the back of the room, and I turned to my friend and said, ‘This is the craziest thing I’ve ever heard.’ And then I said, ‘But what harm could it do?’ I actually said that to her. I said, ‘But what harm can it do?’ ’’

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The story behind the story of facilitated communication, its downfall and re-branding.  This comment I believe sums up the ordeal quite well:

A very important cautionary tale. All of us who strive to be helping professionals need to realize that although our work is often personally very rewarding, we must remain self-aware and not be drawn into using our clients to take care of our own needs to feel important, special, skilled, and loved.

For Ms. Stubblefield to be doubling down on her insistence that "facilitated communication" is anything other than her own fantasies being recorded (like on a Ouija board) and that her sexual relationship with an extremely vulnerable client is anything other than abusive and massively unethical is pathetic. If she had been a licensed clinician, she would have almost undoubtedly lost that license even if the relationship *had* been quasi-consensual. As a fellow Jew, I am ashamed to hear that she wrapped this abuse in the notion of tikkun olam. Nothing is healed by abusing a vulnerable client and his family.

Ironically, her attempts to give a voice to the client resulted in her substituting her own voice for his and for the voices of his family.

An odd but fascinating story from Daniel Engber.

The method that Anna used with D.J., and with several other clients at the time, was devised some 40 years ago to help a girl with cerebral palsy named Anne McDonald. Born in 1961 to a family that ran a dry-­cleaning business in a railway town 60 miles north of Melbourne, Australia, she came out feet first, with signs of fetal distress. For the first hour of her life, she could not breathe on her own. At 3, she was given a diagnosis of spastic quadriplegia with severe mental retardation and sent to the St. Nicholas Hospital for children with profound disabilities.

Even as a teenager, McDonald was small enough to fit into a baby stroller and weighed less than 30 pounds. Her eyes were often crossed, and her arms, neck and tongue remained in constant motion. When Rosemary Crossley, then an assistant at the Mental Health Authority, first saw McDonald, she was bone thin and writhing on the floor. Neither McDonald nor any other child had toys or wheelchairs, Crossley has said, and they weren’t getting an education, either. ‘‘Just the floor and a cot,’’ is how she remembered it.

In 1974, Crossley selected McDonald and seven other children for a special play group. She called them ‘‘beanbaggers’’ — most were so physically disabled that they could sit only in beanbag chairs. Three years later, she turned the play group into a communication study. Her plan was to ask the kids to point at objects, photographs and words, and thus find a way for them to voice their basic needs. She started with McDonald: ‘‘ ‘Annie, I think I can teach you to talk,’ ’’ she recalls in ‘‘Annie’s Coming Out,’’ the memoir she wrote with McDonald. ‘‘ ‘Not with your mouth ... but with your hands, by pointing to pictures of things.’ ’’

The problem was that McDonald had a lot of trouble pointing. When she tried to move her arm, Crossley wrote, it would ‘‘shut up like a rabbit trap,’’ sometimes snapping back against her face. Crossley realized that she would have to keep it balanced. ‘‘I was acting as a responsive item of furniture, not moving her arm but simply facilitating her own movement.’’

The supported pointing worked brilliantly. Now, McDonald could pick out word-blocks and form sentences like ‘‘I want a book, please.’’ Just two weeks into this training, Crossley took out a magnetic board with letters on it to see if McDonald could spell things on her own. Less than a week later, McDonald pointed to the letters ‘I’ and ‘H’ and then to 11 more, producing ­‘‘IHATEFATROSIE.’’ ‘‘This is the first sentence Annie ever spelled,’’ Crossley wrote. ‘‘Annie had freed herself.’’

After a month, McDonald demonstrated a familiarity with local politics. In two months, she was doing fractions. It all happened so quickly that some of Crossley’s colleagues wondered if her assisted pointing might be a fraud. Perhaps Crossley had controlled the children’s hands herself, guiding them to shapes and letters in the way that people move the pointer on a Ouija board.

Crossley had the same concern. ‘‘What I did not know was whether I was subconsciously manipulating her,’’ she wrote, ‘‘or imagining her hand movements over the letters and making up sentences to fit what were really random twitchings.’’ But she became convinced that the method worked after McDonald started spelling things with other people — including references to private jokes that no one else could have known. How had she learned so much so fast? She had worked out the rudiments of language by watching television and overhearing nurses’ conversations. She had learned arithmetic by counting slats on the barriers that enclosed her cot.

Soon after McDonald turned 18, she went to court for the right to leave St. Nicholas. In a proceeding, she was shown an arbitrary pair of words — ‘‘string’’ and ‘‘quince’’ — while Crossley was not in the room. Then she had to spell them out with Crossley’s help. ‘‘String’’ and ‘‘quit,’’ she wrote. Not exactly right, but close enough. The judge accepted the method and ruled that McDonald was competent to make her own decisions. Addressing the press right after, she spelled: ‘‘Thank you. Free the still imprisoned!’’ McDonald went on to graduate from college and died at 49.

The philosophy that drove Crossley’s work, one of radical inclusion, was gaining traction in the world of special education. In 1984, the same year that ‘‘Annie’s Coming Out’’ was made into a movie, Anne Donnellan, a professor at the University of Wisconsin, Madison, published a sort of manifesto for disability rights. An academic paper called ‘‘The Criterion of the Least Dangerous Assumption,’’ it advised teachers on how to treat disabled children: When you assume they will never function as adults, when you shunt them into special classes and give them toys meant for younger children, you make them victims of your meager expectations. It’s better to treat every child as if he or she has hidden talents, Donnellan warned, because if you do the opposite, what happens if you’re wrong?

Assuming competence was the founding principle of Crossley’s method. But her work would not become widely known until a Syracuse professor of education named Douglas Biklen visited Crossley’s Melbourne clinic in 1988. He described that trip — along with a second one a few months later — in a bombshell paper for The Harvard Educational Review in August 1990. The implications were enormous, Biklen wrote. Those who had been categorized as having among the ‘‘lowest’’ intellectual capacities could now tell the world they existed; they could say, as he put it, ‘‘We will reveal ourselves, we will show our creativity, when we feel appreciated, when we are supported.’’

With Biklen’s help, facilitated communication spread through the world of disability services with a near-­religious fervor. At Syracuse, he set up an institute that trained teachers, parents and social workers. Among its earliest disciples was Anna’s mother, Sandra. When she heard about the method, she set out for one of Biklen’s workshops on the night train. Back in Michigan, she had Anna serve as the videographer of her early sessions.

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At one point during the conference, Ashby led a session for facilitators called ‘‘Circling the Wagons: How Shifting Definitions of ‘Research’ Keep the Voices of F.C. Users Out.’’ Before she set out on a critical review of the studies from the 1990s, she apologized, half-­joking, for the ableism of that metaphor: double-­blind. Such insensitivity was not surprising from the F.C. skeptics, she said, who are more concerned with scientific method — with cold, quantitative research — than with real, lived experience.

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Meanwhile, because of past scandals, facili­tated communication has been quietly rebranded. In 2010, the Facilitated Communication Institute in Syracuse changed its name to the Institute on Communication and Inclusion. ‘‘We need to do more on F.C., but we can’t call it that,’’ said John Hussman, a major donor to the institute who runs a $6 billion mutual fund and whose son uses the technique. He had just given a talk on the neuroscience of what is now often termed ‘‘supported typing.’’ ‘‘We have to come up with some other name to fly under the radar and maintain credibility,’’ he said.

The Strange Case of Anna Stubblefield - The New York Times