Is Anything Real in Cujec and Goddard’s book “REAL?”
The article “Diversity, Equity, and Inclusion in Children’s Literature: A Content Analysis of 40 Books” (Taylor, 2022), sent to us by one of our readers,* rated only one book as having “overall negative practices.”
That book, REAL, purportedly “based on a true story,” by Carol Cujec and Peyton Goddard features the use of Facilitated Communication (FC) and is the focus of today’s blog post.
“REAL” book cover (Cujec and Goddard, Shadow Mountain, February 1, 2021)
The story line follows a teenage girl with autism spectrum disorder (ASD) emerging from a “prison of silence” using “supported typing” (aka FC).
Sadly, it is only after she’s made to look more neurotypical (by typing out sophisticated sentences via FC) do the people around her begin to accept her.
The afterword confirms that Charity, the 13-year-old protagonist with moderate to severe ASD, is a thinly veiled characterization of co-author Peyton Goddard’s life and experiences with FC, a discredited technique that Goddard (then age 22) was introduced to in 1997. Current YouTube videos show Goddard still dependent on a facilitator to type.
Determining what is “real” in the book poses a challenge, since most of the passages are likely:
1. Fabricated (e.g., artistic license in representing the protagonist’s inner thoughts and life experiences, since Goddard has limited spoken language abilities) or
2. Facilitated (e.g., typed passages subject to the influence and control of an assistant or “communication partner”)
By focusing on FC, the author(s) diminish what is most likely a sincere attempt to educate its readers about the historically poor conditions of institutions, the challenges of providing a free and appropriate education for individuals with profound language and academic difficulties, and the sometimes-burdensome responsibilities on parents, caregivers, and educators who make decisions on behalf of children who have a limited voice of their own—particularly when it comes to distinguishing evidence-based vs pseudoscientific communication techniques and treatment options.
To be “real,” the educators depicted in the book might have held the legally required Individual Education Plan (IEP) meeting with the parents to frankly and openly discuss the dangers of FC before unilaterally adopting it. Prompt dependency, facilitator control, lack of scientific evidence, and potential harms (e.g., false allegations of abuse) are well-documented problems with FC and many organizations oppose its use, recommending instead, legitimate, evidence-based options.
But no. (Spoiler Alert). At a key moment in the book, a facilitator swoops in and saves the day by grabbing Charity’s elbow and typing out “I AM INTELLIGENT,” thus saving her from being expelled from a “real” school and sent to a full-time care facility.
To seal the deal, Charity later types out with her mom (who had an hour “training session” with the facilitator): DAD, YOU ARE MY BEST FRIEND. THANK YOU FOR BELIEVING IN ME.
Setting aside the fact that this instantaneous success contradicts proponent claims that it takes “hours and hours” of practice to make FC “work,” these messages seem to guilt the administrator and parents into believing in the technique.
Lines are drawn early in the book between critics and skeptics of FC (“the Thinkers”) and those who believe in it (“the Saviors”). Goddard’s real-life “savior” was Anne Donnellan, a leading proponent of FC. (Cujec, 2007)
The Thinkers are the stereotypical “baddies” in the book (e.g., medical doctors, autism specialists, school administrators) and are depicted as devaluing individuals with disabilities. Any attempts by the Thinkers to address the impulsivity, aggression, self-harming behaviors, limited social skills, and minimal communication skills of an individual with moderate to severe autism with anything but FC and full mainstreaming in a “real” school is portrayed with disdain and are not to be trusted.
On the other hand, anyone believing in FC and full inclusion is viewed as a kind, trustworthy, open-minded savior.
Just a few weeks after her “break-through,” Charity is mainstreamed into junior year math, reading, history, biology, and science classes. No one questions how she learned these subjects without any “real” school instruction. Readers are told Charity taught herself these subjects (some mastered by the age of three) with such activities as listening to educational or science programs on television, listening to her mother rattle off flashcards, or staring at a poster of an Emily Dickinson poem. No one questions the veracity of these statements by testing to make sure the facilitators are not inadvertently moving her arm.
In my view, Charity’s (and, by implication, Goddard’s) mainstreaming experience seems dubious. Besides the unexpected literacy and academic skills…
All the coursework is completed with an assistant holding the student at the wrist or elbow, subjecting the answers to facilitator control.
The success of facilitation is attributed to “trust” between the assistant and student. If the communications are independent, why would it matter?
The student sits in the back of the room doing jigsaw puzzles while the facilitator engages in the lessons and takes notes. [In real life, Goddard completed college** in this manner. Her mother reports “She needed to engage her hands so that she could engage her mind. She could complete a 200-piece puzzle in a 50-minute class. She listened so well, in fact, that she never even had to read the notes written by her aide.” (Cujec, 2007)] How is doing a jigsaw puzzle in the back of a classroom considered “mainstreaming?”
In what I find an alarming twist, Charity also asserts, through FC, that she and other students were abused in her former school. And, while, in real life, I believe every case needs to be investigated individually, the inclusion of FC-generated physical abuse and neglect by educators in the book should raise concerns.
From its inception, facilitators have asserted allegations of abuse (often sexual) against their clients’ families, caregivers, or educators. These FC-generated messages, under controlled conditions, have been shown to be the words of the facilitators, not their clients.
In the fictionalized version, Charity’s educators stole money from her, left her in the hot sun on the playground, and shut her in a closet for time-outs.
In real life, as reported in a news article, Goddard at age 24 (via FC-generated messages) disclosed to her parents that she “suffered sexual abuse at the age of 9 by a distant relative and then later by a teacher at her school.” (Cujec, 2007) However, In another news report, she was apparently abused by two relatives and several staff members at her school. (Wiklens, 2013) And, in a third article, she supposedly was molested by a school employee and “suffered at the hands of her cousins.” (Zurcher, 2012)
The problem with such disclosures is that, unless facilitator influence is ruled out, it is difficult to determine the veracity of the accusations.
REAL is comprised, mostly, of the imaginings of Cujec and facilitator-generated messages. Albeit well-meaning, neither reliably document the inner thoughts of minimally speaking individuals with ASD. And, while I agree that more could be done to support these individuals and their families, the book itself deserves the negative rating given to it by Taylor et. al.
Rather than promote diversity, equity, and inclusion, the book presents what I see as a rather dangerous worldview in which individuals with profound communication difficulties can only be accepted and valued if they submit to typing out sophisticated and philosophical messages on a letter board at the hands of their facilitators.
*Note: Thank you to our readers who send in ideas for blog posts. We particularly appreciate reliably sourced, peer-reviewed or vetted articles, but we read everything you send us.
**Goddard, reportedly, attended Cuyamaca College in El Cajon, CA, after typing (via FC) that she wanted to attend a “real” school. With “support” from facilitators who took notes for her and assisted during tests, Goddard received a 4.0 and was made valedictorian of her graduating class.
References:
Cujec, Carol. (2007, Summer). Feeling, Dealing, Healing. USD Magazine.
Seff, Marsha Kay. (Autistic Point Loma woman finds her ‘voice’ in revealing new book. The Peninsula Beacon.
Taylor, Tina M., et al. (2022, December) Diversity, Equity, and Inclusion in Children’s Literature: A Content Analysis of 40 Books. DADD Online Journal. Vol. 9 (1); pp. 4-26.
Wilkens, John. (2013, March 31). What Autism is Like, From Two Authoritative Voices. Union Tribune.
Zurcher, Ariane (2012, November 14). An interview with Peyton Goddard, a non-speaking autistic, and her mother, Dianne Goddard. Huffington Post.