When people continue to believe in a method that has repeatedly been proven not to work, what harm can it do? Does it matter that an herbal supplement is ineffective if someone who uses it says it truly makes them feel better? Does it really matter whether or not primates can learn American Sign Language or parrots can learn to read English out loud if it makes animal lovers so happy to believe that they do?
Misinterpreting animal communication can of course be dangerous. In 2007, a Dutch woman who insisted she was bonding with an ape at her local zoo refused to believe the primatologists’ warnings that staring directly into a male gorilla’s eyes and showing one’s teeth—i.e., smiling—triggers aggression. She refused to believe this even after the gorilla broke out of his enclosure and attacked her.
But what if someone assumes a living person is communicating with them? What if they assume said person is confiding their wishes and life choices in them? What if they can do so because we don’t share a common language with the person they claim to be speaking for?
Facilitated Communication, a.k.a. “FC,” is a method developed in the late 20th century to help severely disabled people with little or no speech communicate with others. By supporting their patient’s hand or arm, a trained facilitator could theoretically help the patient type out sentences, thereby “unlocking” intelligence previously obscured. The method was considered a breakthrough for patients with diagnoses ranging from severe autism to severe cerebral palsy. It was touted as a miracle for their loved ones, who understandably wanted nothing more than to be able to hear their thoughts, wants and needs.
Anna Stubblefield is a philosophy professor and disability rights advocate who, until recently, taught seminars about FC at Rutgers University. What she did not teach her students is that FC has been condemned over the past three decades by the American Psychological Association, the American Association of Pediatrics, the American Association on Intellectual and Developmental Disabilities, the Federal Trade Commission, and the New York State Department of Health, among others. Double-blind testing generally reveals the facilitator to be subconsciously guiding their patient’s typing, rather than simply supporting it. This year Sweden banned FC in schools nationwide.
Professor Stubblefield adamantly rejects the classification of FC as a pseudoscience. Her mother was a pioneer of the technique. When one of her seminar students asked her in 2009 if it could perhaps help his severely disabled young adult brother—referred to in the press as “D.J.”—she agreed to treat him. A 20-page report in The New York Times Magazine chronicles Stubblefield’s increasingly intimate relationship with her patient, eventually culminating in her announcement in 2011 to his family that she and D.J. were in love. She planned to leave her husband and two children for him. As his legal guardians, D.J.’s family told her she had overstepped her boundaries and requested she leave him alone. When she did not, they eventually filed charges against her. They testified that gradually Stubblefield’s claims to D.J.’s interests and values—typed out in their FC sessions—had begun to sound suspiciously like things she would want him to say. Stubblefield was sentenced last month to 40 years in prison for sexual assault.
Another proponent of FC, Martina Susanne Schweiger, was convicted last year in Queensland, Australia for performing sex acts on a 21-year-old patient whom she believed had reciprocated his love for her via FC.
I’ve written before about widespread prejudices against disabled people and how often it denies us our sexuality. But disabled people also suffer sexual abuse at rates far higher than the general population. Most are taken advantage of by their family members and/or caregivers. Stubblefield and the remaining proponents of FC argue that their critics are ableist for denying D.J.’s capacity for intellect and intimacy. The prosecution argued that Stubblefield is ableist for assuming she knows what D.J. wants.
The desire to be the next Miracle Worker is understandable and so often noble. Who doesn’t want to help those in need? And the lure of the controversial in the pursuit of justice is not uncommon. From Jodie Foster and Liam Neeson in Nell to Sean Penn and Michelle Pfeiffer in I Am Sam to Adam Sandler and Don Cheadle in Reign Over Me, Hollywood is rife with love stories and courtroom dramas about a misunderstood outcast who has finally found the one open-minded hero who understands him, believes in him and then must fight the cold-hearted, close-minded authorities from keeping them apart.
Yet red flags should go up whenever there is a risk that a self-appointed advocate is putting words in someone’s mouth, no matter which side that advocate thinks they are on. Particularly when their patient or client belongs to a highly marginalized minority.
News of this case has elicited many head-shaking responses along the lines of, “Well, they all sound nuts.” One of the jurors told NJ.com, “I was like…‘You’re going to leave your husband and your kids for someone like this?’” Disability rights advocates rightly bristle at the infantilizing of D.J.—not to mention the salacious headlines that seem obsessed with his personal hygiene—while ultimately declaring the case incredibly sad. Yet we rarely use “nuts” or “sad” to describe male teachers convicted of seducing students unable to give consent. We describe them as predators or abusers.
Abusers of course rarely think of themselves as such. Child molesters are often convinced their victims were flirting with them. Few would consider themselves sadistic. Most are simply skilled at rationalizing their behavior to themselves. But regardless of what they believe their intentions are, abusers by definition deny others power in pursuit of their own.
The Stubblefield case and the Schweiger case highlight a very uncomfortable fact for disabled people everywhere: that some of the caregivers and activists working and sometimes fighting on our behalf are doing it to feed a savior complex. And anyone with a savior complex is not truly listening to those they claim to be helping.
Addressing this problem becomes increasingly difficult when we consider how very young the concept of disability rights is over the course of human history. Living in any other era, most of us would have been abandoned by our families in asylums or elsewhere. Ancient Spartans advised throwing us off cliffs after birth. Some modern philosophers, such as Prof. Peter Singer, still advocate infanticide for some. Awareness of all this often makes us feel compelled to be eternally grateful to anyone who offers us any sort of support or help, regardless of whether or not it is truly helpful or respectful of our boundaries.
That we do not yet have the means to access D.J.’s thoughts and desires is indeed tragic. But opposition to FC does not mean we damn severely disabled people to the realm of hopelessness. On the contrary, accepting criticism of FC can only help to improve upon the ways in which researchers develop better practices and technologies. Relying on discredited methods would not have gotten Stephen Hawking his voice. Annie Sullivan prevailed with Helen Keller because she not only relied on rigorously tested methods but also shed her status as Keller’s sole communicator by enrolling her in an interdisciplinary program at the Perkins School. The ability to kill your darlings is an ingredient of innovation.
And any true investment in disabled people and the methods that best assist them must be accompanied by the credo activists began using around the time D.J. was born: Nothing about us without us.