5 months ago
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Tell Them You Love Me, a documentary now streaming on Netflix from director Nick August-Perna, does not include a single interview with its main subject. The film is about the white, abled former professor Anna Stubblefield, who was accused of sexually assaulting Derrick Johnson, a nonspeaking Black man with cerebral palsy whom she says she taught to communicate via a method called facilitated communication (FC).
Johnson isn’t interviewed in the film, because his family has always understood that his diagnosed intellectual disability and lack of motor control meant he would never be able to communicate. At least, almost always—except for the period from 2009 to 2011, when they believed Johnson was communicating via FC, facilitated by Stubblefield.
The question of Johnson’s ability to communicate, and what he would have to say if he could, is at the core of Tell Them You Love Me. It’s a question refracted through the lenses of autonomy, ability, ableism, and race, and the film knows better than to try to offer an easy answer. August-Perna’s light touch as a filmmaker also does not offer an easy answer to the question posed by the court case it eventually depicts, of whether what happened between Anna and Derrick was sexual assault. The court, for its part, decided the answer was “yes”: Stubblefield was sentenced to two 12-year terms, to be served concurrently. She was released after two years when her initial conviction was overturned, and pled down to a lesser sentence.
Using interviews with Stubblefield and Johnson’s family members, FC expert Howard Shane, disabled anthropologist and professor Devva Kasnitz, and Anna Stubblefield herself, Tell Them You Love Me recounts the events that unfolded between spring of 2009, and the present day.
Before Stubblefield met Derrick Johnson, she met his brother, John. John Johnson was a PhD student at Rutgers University in 2009 when he signed up for Anna’s class on philosophy and disability studies. It was there that John learned about FC, from a video Anna showed depicting Sue Rubin, a woman who had been diagnosed with autism and an intellectual disability, learning to use the method to communicate and going on to become a scholar and activist. In FC, a person has their hand or arm physically supported by a facilitator as they point to letters on a page or keyboard, spelling out words. It’s designed for those who are unable to communicate via conventional methods due to a lack of speech and motor control. Watching Sue, John says he was reminded of his brother.
Derrick had experienced multiple seizures as an infant, and had subsequently been diagnosed with cerebral palsy and hydrocephalus. Medical records from Derrick’s infancy describe him as having “severe mental retardation” (language now obsolete in the healthcare field because it’s imprecise and stigmatizing). At one point in 2010, a message typed by Derrick and Anna via FC described Derrick as “...confined in my life [...] in a body that is not able to move the way that i would like.”
He attended a day program that helped him learn to walk, as well as his family’s day-to-day activities, from church services to beach trips. John says it was always clear to him that Derrick was “there”—smiling when he was happy, expressing frustration when he wasn’t, generally engaging with life. But he had never had any formal education.
John approached Stubblefield after class and asked to learn more about FC, imagining the possibilities it might hold for Derrick. Stubblefield, who grew up around FC because her mother used it in the work she did as a psychologist and aide for disabled people, offered to facilitate for Derrick herself. After she spoke with Derrick’s mother, Daisy Johnson, it was decided that Stubblefield would teach Derrick facilitated communication.
“She was gonna move mountains, and I accepted her at her word,” Daisy says in the documentary.
As he continued working with Stubblefield, Derrick appeared to be progressing rapidly. Although both Daisy and John tried to learn to facilitate for him as well, their efforts always proved fruitless. Nevertheless, Derrick seemed more and more interested in writing, reading, and learning. He enrolled in an African American Literature course, with Stubblefield facilitating, and a different facilitator helping with his essays. He also attended FC conferences where Stubblefield shared statements that he had written.
“It was like the porch lights went on,” says Daisy. “I felt very excited about it.”
As John approached the end of his PhD, there was something heartening about seeing Derrick seem to follow in his footsteps: “[I’m a] Black scholar, my baby brother who was developmentally disabled could be a Black scholar. I felt great.”
It makes sense that Derrick’s family would want this for him. It makes sense that any person would want this—the ability to make their needs and desires known—for themselves. But the needs and desires Derrick was allegedly sharing via FC became a source of contention between Stubblefield and the Johnsons.
During a car trip, Stubblefield said Derrick preferred classical music to the gospel station Daisy was playing. She told them he liked red wine better than beer, wanted to be a vegetarian, and hoped to move out of his mother’s house. John couldn’t help but note how much more aligned these preferences felt with Stubblefield’s identity as a white woman, than with the brother he knew and the larger context of their Black family.
Then, Stubblefield told John and Daisy she and Derrick were in love, that she was going to leave her husband for him, and that they had a sexual relationship. Confused, angry, and afraid for Derrick’s safety, the Johnsons reported Anna to the police. Prosecutors began investigating the allegations, and in 2013, Anna was charged with two counts of first degree aggravated sexual assault. The court ruled that no evidence related to FC would be considered, because the process was not recognized by science.
Stubblefield was convicted in October of 2015. Though she has since been released, she has not seen Derrick since 2011. Derrick still lives with Daisy and spends time with John and the rest of his family often. He no longer uses facilitated communication.
Proponents of FC insist it falls under the wider umbrella of Augmentative and Alternative Communication (AAC) methods, which the American Speech-Language-Hearing Association (ASHA) defines as “all of the ways that someone communicates besides talking.” ASHA has denounced FC, calling it “pseudoscientific” and “harmful.” There have been multiple cases of sexual abuse allegations made through facilitated communication which were later ruled false, as well as multiple instances of facilitators engaging in sexual activity with those they were facilitating for, claiming it was consensual. A significant number of studies debunk FC, seeming to show that facilitators are influencing the output deliberately or, more often, through the ideomotor effect (the same subconscious phenomenon that makes it seem like Ouija boards truly channel spirits).
The key difference between FC and AAC, underscoring the reasons FC is considered fraudulent, is the direct physical guidance the facilitator exerts while serving as a conduit for communication. There is simply too much potential for, and evidence of, interference.
It’s important to note that many nonspeaking or partially speaking disabled people use analog and digital letter boards and keyboards to communicate. Some, like autistic disability advocate Jordyn Zimmerman, spent years unable to communicate because they’d received intellectual disability diagnoses that made caretakers assume they had nothing to say. Nonspeaking people have long been subject to neglect and abuse, both as attempts to get them to speak, as as a consequence of the belief that if they’re incapable of speech they must be incapable of meaningful thought. As is often the case when it comes to adaptive technologies, gaining access to AAC can be life-changing.
Part of understanding the issues raised in Tell Them You Love Me is acknowledging how many people have been denied the right to communicate based on the ableist presumption that they couldn't. To abled people, it may seem like that Derrick Johnson could never have communicated or experienced sexual desire simply because he's visibly disabled. But just as Anna almost certainly, if inadvertently, superseded Derrick’s supposed voice with her own, abled viewers of Tell Them You Love Me could superimpose over the story a range of preconceived notions about disability, communication, and sex.
“It is a longstanding and unfortunate truth that disabled people are often seen as undesirable and even as unable to experience desire, love or care in the way that all individuals do. As disabled people we understand how false that notion is and how harmful it can be,” says journalist and disability rights advocate Keah Brown in an LA Times review of Alice Wong’s anthology “Disability Intimacy,” which further explores this topic.
Even if FC did tap into previously unrealized capacity for communication, the inherent potential for abuse is enough to call consent into question. How do you refuse anything, up to and including sex, when the person asking has a vested interest and control over your very ability to say “no”?
Ableism bolsters legislation that prioritizes helping disabled and chronically ill people die over helping them live. It leads to coerced and forced sterilization of disabled and chronically ill people, which a group of women with sickle cell anemia spoke out about just last month. It’s part of the impetus behind what disability rights activist Stella Young first called “inspiration porn,” which portrays disabled people as not merely “just as good” as everyone else but better—as though only by inspiring the rest of us can they justify their existence.
In an individualistic, standard-obsessed society, we struggle to believe that a life that requires profound reliance on others or deviates significantly from what’s considered “normal” is worthwhile and valuable. Often this devaluation makes disabled people and those who care about them vulnerable to being taken advantage of by people who claim to offer “fixes”—to catastrophic effects.
