In recent years, TASH has reached out to support self- advocacy and self-determination. This is reflected in TASH conference keynote addresses by people with disabilities -- Sandra Jensen's address this year-- in the participation of self- advocates in the conference and on the Board, in their support of the Home Of Your Own coalition, and in collaboration with ADAPT and other disability rights groups. It is also reflected in TASH's commitment to pursuing science that makes a difference in people's lives by supporting self-determination and inclusion.

The issue of facilitated communication has often been cast as a scientific issue: i.e. is it real or not? It is also a political issue: i.e., what kind of research should we do and to what end; should we support facilitated communication users and, if so, how; and what responsibility do schools and agencies have for allowing and supporting facilitation? This article suggests that TASH members cannot support a self-determination agenda by remaining silent on the facilitated communication controversy. As with every other issue we address, a commitment to science, self-determination and inclusion can and must go hand-in-hand.

Whose Side Are We On?

Lucy Harrison has autism and until her early teens was assumed to be moderately retarded and unable to read. In 1989 she began to learn to express herself using facilitated communication. Since then, she has appeared on two television programs (including ABC Primetime Live and NBC NOW) and has been written about in the New York Times Magazine. Currently, she takes college preparatory high school courses in English Literature, Mathematics, Science, and History, and has plans to attend college next year.

Two months ago, Lucy Harrison gave a presentation at a conference on autism sponsored by the Geneva Centre in Ontario, Canada. She spoke her speech -- recently she has been able to read aloud what she types with facilitation. She still cannot speak conversationally in sentences, but she can read her own prepared text.

Despite her successes, she recognizes and worries about the controversy surrounding facilitated communication. The world may appreciate the controversy, seeing it as a kind of contest, but she wonders at what cost. "Will voices be silenced forever? This is the fear that haunts me." "Perhaps one day," she writes, "I will look ... and see really free people. But today there is thick confusion, too much pain, and trash of dreams."

It seems to me that the question facing TASH members and other people in the field is where to locate ourselves in the debate. Unfortunately, the debate usually boils down to whether the method is real or not, legitimate or hoax, a way of eliciting words of people with communication impairments or words of their facilitators. This way of framing the issues clouds real understanding.

We already know that in some studies all of the facilitated communication users were unable to prove they were authors of the words typed with facilitation. Yet we also know that in some studies the majority of those tested were able to prove they were typing their own words (see the annotated bibliography in this issue for examples of both kinds of research). Predictably, researchers will continue to explore the issue of authorship as well as many other questions about the method.

But as Lucy Harrison explains in her writing, this is more than an academic debate. It is a struggle over whether certain people will have any voice at all and whether the world will hear them:

The battle will continue and there will be many casualties. There will be people who will reach the end of their lives without having a chance to talk to the family and without a chance to show who they are inside. I hope that there is a heaven where at last they will be free.

Action Steps for A Change

The last seven years of research and experience with facilitated communication provide a solid basis for formulating a progressive agenda on facilitated communication. The following are action steps that TASH members can take to support people who use facilitated communication or who might benefit from learning to communicate with facilitation (please note that these apply not only to facilitated communication but to any situation involving people whose communication has historically been disregarded or suppressed).

1. Know what the method is and what it is not. Facilitated communication is a means of communicating through pointing, with physical and emotional support from a communication partner. It may be useful for people who cannot speak or whose speech is limited and who cannot point reliably. Facilitated communication is not a cure for autism. It does not work for everyone. It does not guarantee high level communication for all who use it.

2. Support the right of people to communicate and to prove they are communicating. The TASH Resolution on Facilitated Communication supports the right of individuals to have access to any method that might help them, the right to speak freely, and the right to prove that they are communicating their own thoughts. Whenever educators try any method, they cannot be sure whether it will succeed with a given individual. But one thing is certain about facilitated communication and every other method, if you do not try it, it cannot work. And you will never know if it might have worked.

3. Support people to use the method in everyday settings; this means making sure that schools provide equipment, facilitators, appropriate training, and assistance to families so that they can learn about the method. In 1994, Sharisa Kochmeister addressed the TASH conference through typing; she is a person who at one time had a measured intelligence score of 10. She does not speak. She learned to communicate first through facilitated communication and now types without physical support; her father, step mother, and sister need only sit nearby for emotional support. Sharisa accomplished this level of independence after several years of using the method and with extensive support from family, school, and other interested friends.

   At the 1996 conference of the Autism Society of America, Lucy Blachman typed without physical support. Yet she needed to have her mother sitting nearby. Since 1989 when I first met her in Australia, she has earned a Bachelors degree at Deakin University and is currently enrolled in a Masters Degree program at Melbourne University.

   When I first observed her at her high school in Victoria, she needed arm support from her teaching assistant/facilitator. And under some conditions, particularly with a brand new facilitator, any communication at all was problematic. Yet even then, in 1989, I observed that with her mother's or Rosemary Crossley's hand resting on her shoulder, she could type out conversational text.

   Lucy Blachman, Sharisa Kochmeister, and Lucy Harrison and many others have done well with facilitated communication. Each has attended regular classes, had the assistance of facilitators in school, had communication equipment available to them, had excellent training in facilitated communication, and had intense family support.

4. Be knowledgeable about the most controversial aspects of the method. Facilitated communication became especially controversial when fc users purportedly typed allegations of sexual abuse. Some of these allegations were found to be groundless. Others were found to be accurate. Recent law review articles (Dwyer, 1996; Phipps & Ells, 1995; Maurer, 1995; Luxton, 1995) and court decisions (Kansas v. Warden) have concluded that people who use facilitated communication must not be denied access to the courtroom just because they use an untraditional mode of communication; to deny them access to the courtroom would be a violation of the Americans with Disabilities Act and of the Due Process clause of the Bill of Rights. Simply put, individuals who make allegations must have a chance to prove that their words are their own. Then, courts will have to decide, as they must in cases involving speaking individuals, whether particular allegations are true or not.

5. Call for research that is sensitive to people's disabilities. In several studies, most of the individuals tested were successful in proving, under controlled conditions, that they were authors of the words they typed with facilitation (e.g. Cardinal, Hanson, & Wakeham, 1996; Sheehan & Matuozzi, 1996; and Weiss, Wagner, & Bauman, 1996). These studies appear to include disability- sensitive protocol conditions that are different from most studies in which all or most individuals being tested have failed. Such conditions include extensive practice, natural environments for testing, extended time for responding, involvement of the fc user in designing the study conditions, constant feedback and so forth. Such tests prove that it is possible to test facilitated communication, but that not any old test will do. Educators and parents need to advocate for test protocols that are disability- sensitive. Otherwise, we allow research to discriminate against the people being tested.

6. Support facilitated communication users to be in control of their own words. A major limitation of facilitated communication is that at least for some people it is easy to influence or cue their communication--of course it important to recognize that all communication, including all augmentative communication, involves various kinds and degrees of cuing. And, in complex ways, all communication is co-constructed. This poses a significant problem in any communication situation where there is a real or potential imbalance of power among those involved; how do we ensure that people who use the method are supported to author their own words? Here are some suggestions:

   • Be patient and try not to anticipate what a person is going to type; facilitated communication, like all augmentative systems, is much slower than speech and requires the communication partner to wait for what is being produced.

   • Provide feedback. Let the person know what you are reading from their pointing and when you are not sure what the person is pointing at, say so, asking the person to point again. Also provide feedback and support in terms of how the person is typing; don't facilitate if the person looks away from the letter board, computer keyboard or other target -- looking away leads to many errors in pointing and to reliance on the facilitator to guess what the fc user intended.

   • Ask clarifying questions. There should be numerous situations in a conversation where you are not certain about what the fc user means. Ask for clarification: i.e. "I'm not sure what you mean? Could you explain that?"

   • Encourage the fc user to feel comfortable making real choices.

   • Encourage the fc user to state his or her own opinions freely and to disagree with you as much as he or she wants. If the fc user never disagrees with the facilitator, this is probably a good sign that the fc user is not taking control of his or her communication.

   • Encourage the fc user to work toward and achieve independent typing for some or all of his or her communication. As Rosemary Crossley (1994) has explained, independent typing is a realistic goal for most fc users. But as we have found in our research, people who use facilitation are often not convinced they can achieve this goal or that it is even worth working on, unless they have a lot of support to do it (see Biklen and Cardinal, in press).

   • Encourage fc users to have many facilitators. This will maximize opportunities to communicate across multiple settings. Also, multiple facilitators will come to see that the individual who uses the method has a distinctive style, distinctive themes, and will share information across multiple facilitators; my colleagues and I discussed this in an article entitled "How Teachers Confirm Authorship of Facilitated Communication," which appeared in the Spring, 1995 issue of JASH.

7. Read the writings of authors who use the method. As individuals get good at using the method--some are achieving greater levels of independence and some develop extremely distinctive styles of composition-- we have a new opportunity to learn about how a group of people with disabilities experiences disability. I especially recommend Birger Sellin's autobiography, recently translated from the German language: I Can't Live Inside Me Anymore (1994) and Sue Rubin's opinion editorials in the Los Angeles Times. (1995a, 1995b). These are provocative works, for they give insight into breakdowns in communication, problems with excessive stimulation in the environment, and the dangers of how mental retardation is currently assessed.

8. Don't be afraid to speak about the accomplishments of people who use facilitated communication. Sharisa Kochmeister types now types without physical support. Sue Rubin and Lucy Harrison are planning to attend college. Jeff Powell has published some of his poetry. Birger Sellin's book offers valuable new insights into autism. We need to share this information with educators and communication specialists; these are important accomplishments that could give encouragement to thousands of others.

9. Learn from people with disabilities about how the method works and how it best might be tested. Encourage thoughtful research on the method, especially research that honors the perspectives and advice of people with disabilities, including facilitated communication users. Donna Williams, author of Somebody Somewhere, Nobody Nowhere, and Like Color to the Blind, reminds us that unless we learn to listen to people with autism, we will not have a clue about how a person with autism experiences the world. Here is what she says in her 1994 JASH article about testing:

   The person with autism, in my view, learns quickly that the ways of people who do not have autism do not work for them. What is more, I feel they learn quickly that when they attempt to manage or sort out (and, inevitably react to and be frustrated by) their own systems' chaos, people without autism will generally treat their attempts as a "problem" and will interfere like dentists working with garden tools who refuse to admit their way may not be the only comprehensible and right way of managing things and learning. One result for this may be that people with autism generally learn to "smell out" the dentists who come along with garden tools and arrogant assumptions.

   Larry Bissonnette, an fc user who types with just hand-on-the- shoulder support, made a similar point when he wrote,

   You cannot learn titling of disability unless you imprint real experiences of people who live with limitations of lasting intensity on property of esteemed scientific inquiry.

   At the 1995 TASH Conference, Eugene Marcus gave a presentation on how he learned to do the name-the-picture style authorship test of facilitation first described by Wheeler and his colleagues at the O.D. HECK institution in New York State. Initially he found the test format very difficult, but with practice and several other minor modifications, he was able to use that protocol to prove he was communicating his own words. His research will appear in my forthcoming book (co-edited with Don Cardinal) entitled Contested Words, Contested Science: Unraveling the Facilitated Communication Controversy.

10. Presume competence, not incompetence. Current views of mental retardation still focus on deficits (i.e. what are the personžs limitations?); it is time we began to challenge how mental retardation is assessed. The idea of presuming competence is an important rule for educators. It places the burden for success equally on the teacher as well as the learner. Any failure to elicit evidence of competence always begs for a new strategy or approach, a new way of finding ability. We have enough evidence from facilitated communication as well as from accounts of other augmentative communication aid users such as Christy Brown (My Left Foot), Ruth Sienkiewicz-Mercer (I Raise My Eyes to Say Yes), and Christopher Nolan (Under the Eye of the Clock) to know that had their parents or teachers not kept trying with them, they would never have succeed to the degree they did. Each of them proves the point that not being able to speak is not the same as not having something to say. Historically, many individuals who today are recognized as being very capable were formerly kept silent and presumed retarded. And presumably many more are still silenced. It is time to abandon the deficit model and embrace the presumption of competence.

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    Annotated Bibliography on Facilitated Communication.

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