A popular practice which violates the human rights of students with disabilities continues to be used today, despite having been disproved many times over since the early 1990’s, and there is no sign that its use will cease without action.
There exists an important document in the lives of individuals with communication needs called the Communication Bill of Rights. Developed by the NJC, the bill of rights includes many protections and important considerations for helping individuals communicate with the assistance of technologies and support partners. One of these rights is this:
“[to] be spoken to directly and not be spoken for or talked about in the third person while present”
You may be surprised to discover that, not only does one communication practice work contrarily to this right, specifically, the right to not be spoken for, but it goes further, consistently failing to protect individuals from having others speak with their own voice. It may shock you still to learn that despite empirical evidence clearly showing that this practice regularly exposes communicators to a violation of their rights (up to 38.9% according to a 2008 treatment review), it is enjoying a current resurgence in some academic communities and teaching circles. In some circles (yes, even academic ones), the use of this practice never fell out of favor.
What every educator and service provider needs to know about this issue:
- Facilitated Communication- the act of supporting an individual’s communication by providing physical touch during their message generation.
- Touching an alternative communicator during their communication using a letter board or voice output device exposes the individual’s message to the influence of the support person.
- Supporter influence often occurs without the support person’s knowledge. The support person subconsciously controls the movements of the individual (which can occur even with a light finger touch to the shoulder), as is the case with water divining and Ouija board use.
- There are many documented cases of supporter influence which led to false messages being attributed to the communicating individual, which led to sexual abuse accusations, false court testimonies, and actual sexual abuse of individuals with disabilities.
- Facilitated communication has undergone a “rebranding” and goes by many different names today, such as “supported typing,” “rapid prompting method,”and more.
Two months ago, a university professor was sentenced to 10 years, 2 months and 13 days of prison without the option for parole based on a conviction of sexual abuse. An individual with severe disabilities, perceived by the professor to be authoring his own messages through FC, was perceived to be condoning a consensual and mutually loving relationship. The professor maintains her innocence to this day, claiming that the individual gave consent for a sexual encounter through facilitated communication. Unfortunately, the assailant was not the only one jumping to conclusions about this young man’s cognitive abilities; based on the state assessments of this young man’s abilities, the judge of this case read in the remarks of the sentencing that “[the assailant] was smart enough to know that [the victim] wasn’t smart.” These same tests are treated with skepticism by many communication professionals.
Teaching and assessing the communication of individuals with complex communication needs is exactly how it sounds: complex. Prominent practitioners in the field of communication are fond of calling this the our “Catch 22”: we cannot know for sure how to help someone communicate without an idea about their cognition, but we can also not know about an individual’s cognition unless then can communicate. But nothing complicates these problems more than misinformation and deception, both of which are proven byproducts of facilitated communication.
The practice of facilitated communication is particularly dangerous, because it creates a culture of intelligence and expectations around the communicator’s (perceived and/or authentic) competencies, which none of us want to go away.
This problem has grown to such a pitch that current studies around this issue now focus on the psychology of the individuals promoting this flawed practice, as opposed to the practice itself: teaching the practitioners and parents to recognize common logical fallacies when they come across it. One such study equated the acceptance of FC as a means for supporting independently communicated messages to the acceptance of water divining, wherein an individual communicates with the gods by holding a crystal over sugar water; we see what we want to see. We are no longer studying the problems with the practice of FC, but are studying the FC cultural phenomenon.
Several commentaries have named this as a prominent reason why this practice failed to fade along with its causal rejection. It is the subject of many recent articles on the subject, and many solutions have been posed. The crux of the problem lies in the development of what Pat Mirenda (2014) described as a resistance culture. There is a portion of the population that holds a belief system around facilitated communication- no matter how much, or what quality of evidence is presented to them, they will continue to believe that it produces authentic messages from the communicator. In short, FC persists in practice, because there is not just a problem with FC as a practice, there is also an FC perpetuating culture.
One rallying cry of this perpetuating culture is the promotion of “presumed competence” for individuals with disabilities. Travers and Ayres (2015) described how this idea, that we should presume the presence of ability in individuals without expecting proof of those abilities, is a gateway to pseudoscientific thinking.
How, then, do we promote safe and ethical learning practices without alienating individuals that have a deeply held belief around the pre-existing states of capability present in our clients and students?
Maybe a more relevant question is, in order to reconcile some of what FC supporters want to preserve with what we can ethically practice, can we recognize the learning and positive outcomes around these practices without promoting the practice itself, thus exposing vulnerable individuals to abuse? (To be clear, studies providing a causal link between the practice of FC and student gains do not provide sufficient proof, while many causal evaluations have come to the conclusion that there is a lack of benefit, and in some cases, significant harm)? The answer to this is yet to be determined, but several prominent communication researchers have made it clear that their answer is no.
!!Call to Action!!
- Do not demonize those who believe in FC. Individuals who believe that facilitated communication is allowing their client, student, child, friend, or family member to communicate can be deeply hurt by the realization that they have been the author of the communicating individual’s messages. It is also helpful to keep in mind that everyone, on both sides of this issue, is working to support what they perceive to be the best interests of individuals with disabilities.
- Respect that there are good reasons, logical or emotional, to support both sides. Our response needs to respect each person’s vision of the communicating individual, and make every effort to maintain a culture that promotes the potential for competence in each individual with disabilities (a culture which may have originated with the changes in perception created by FC-generated messages).
- Be firm in your commitment to the rights of the individual to be protected from harm, and clear in the definition of those rights. Help others to consider that they are subjecting individuals with disabilities to lower standards for practice, and greater risk for harm when they decide to reject basic scientific principles for evaluating instructional practices.
- Presume the potential for competence, not competence itself. Out of respect for our student’s abilities to learn, we cannot presume their competence, but instead do our best to understand where they are so that they might seek it.
- Stand up to individuals who try to stop the discourse. It is, unfortunately, not unusual for researchers questioning FC to be accused of harming individuals with disabilities, not understanding their perspectives, and undermining their efforts to communicate. We cannot tolerate slander, deceit, and manipulation in order to maintain room for the practice.
- Dissenting opinions cannot be silent. Higher education professionals have, in some cases, been silently protesting the promotion of these practices, without directly addressing the issue. This is not enough.
- Take high risk practices out of consideration for use. As practitioners, we must maintain the education of our field, such that a practice with such high risks be considered after the exhaustion of all other options with lower risk, and eliminated from consideration whenever possible.
- Apply rigorous research standards. Research in the field must require high standards for the use of these practices, including double-blind examinations to determine the author of the messages in each case, replication of communication results across trusted facilitators, and stringent ethical guidelines.
Essentially, this problem is an issue of protecting the rights of individuals in our most vulnerable populations. While it is true that there is an argument to be made on both sides, the question that most in our field are answering for themselves is this: is it more ethical to protect an individual’s freedom of expression (CRPD Article 4, Article 21, as described by Jeffrey Chan) through any and all available means as opposed to those which carry little to no risk of harm, or to protect an individual’s right to not have others speak with their voice, when evidence suggests that significant risks exist? As it turns out, there really is no question.