Donna Williams, the author of Nobody Nowhere and Somebody Somewhere, has made me bubble with her words and her meanings for three months now. She was the quietest and yet the most powerful keynote speaker at the Facilitated Communication Conference in Syracuse last May. While her difficulties with noise, crowds, and disorganization made it impossible for her to be at our conference beyond the times when she was scheduled to speak, her presence was very clearly felt. It is a wonderful event to have more than 300 people respectfully stand in silence as their ovation to a woman who has just moved them deeply and has also let them know that applause hurts her ears. It is a remarkable event to have a person with autism reveal her ever so clear thinking about her experience of the world around her, more clearly than most of us so-called "non-autistic" people could ever hope to express how we experience our worlds.
Near the beginning of her first talk, titled Self-other awareness: How systems forfeiting and mono difficulties affect what is seen and what is not seen in FC, Williams told us that we could "bubble with her words for a change." In this way, she put us on notice that she might be using words that might not be immediately comprehensible to us. She proceeded to teach us about her theories of the nature of autism, her ideas about facilitated communication, and her creativity in dealing with the challenges of her disability.
Rather than using this article to re-tell her speeches, I would like to reflect on a few of the bubbles her ideas have caused in my mind. Alan Kurtz (1995) has written a wonderful summary of her first speech which has appeared in Maine's facilitated communication newsletter and in the newsletter of the Autism National Committee.
There are three areas I would like to highlight:
THE REALM OF BE Intelligence undeterminable by behavior
Passion unobservable by self-expression
Interest imperceivable by action
Like undetectable by smile
Wants unfathomable by reaching hand
All may exist beyond fantasy, beyond wishful thinking, beyond self-delusion
All may exist in a reality beyond the grasp of those who live in a world of appearances
All may exist unable to be sensed by all by those who have moved within the realm of be
With this opening poem and such clarity of words, Williams distinguished herself and others with autism from those in the "realm of be."
Williams spoke much about sensory overload, referring not only to the visual and auditory senses, but also to overload in terms of the need to process a wealth of information available in ordinary experience through touch, intonation, space, the speed of an interaction, associated meanings, noticing and monitoring one's own actions, among other things. She described her own difficulties as emanating from this overload and the "shut-down" mechanisms that she uses to manage this overload. This struck a familiar chord in me: ordinary overload, while probably not as overwhelming and ever-present as she described it for herself, causes me (and other people I know) to process less, to shut down and to experience problems in areas Williams mentioned. It feels very familiar to see as problems of overload challenges we may face in making sense of situations or of ourselves ("connection.") At times, we may not tolerate others or the world around us very well, or we may have difficulty in controlling how we respond to others and the world because we are overloaded. While Williams seemed to refer only to persons with autism when she described these issues, my sense is that such reactions are, to various degrees, common to everyone.
Williams' theory also assumes that, while the overload problem causes a shutdown of conscious processing, "subconscious automatic processing" is maintained, enabling overloaded people to learn information about the world despite their apparent mental absence. This information would later be accessed through triggers and cues.
For myself, I often find it difficult to differentiate the conscious from the subconscious, and certainly do not know how I learned the many things that I have learned over the years. I am sure, however, that I have learned quite a lot without my conscious intent and that much of what I have learned is "passive knowledge," knowledge I can only retrieve when someone asks me the right question or I am in a situation that triggers the specific memory.
This is not to say that I do not acknowledge the extraordinary work Williams and other people with autism must do to be able to function well in an ordinary world, and that this work is different from the work that I need to do when I feel myself shutting down or when I am trying to retrieve information I have learned. But I believe that the difference lies in a matter of degree.
These similarities make it possible for each of us to use our own vantage points to understand what it is a person with extra-ordinary overload problems has to deal with. This exercise aids us in our sensitivity and creativity in support. Knowing that we all need triggers to get at vast amounts of information stored in our minds will make us less judgmental the next time it is difficult for someone to articulate an idea or to answer a specific question without someone's help.
As Williams stated in her speeches, when we ask a person to use facilitated communication, we ask them to pay attention to numerous things at the same time: e.g. our touch, the letter board, our question, their thoughts... but that's just the surface. What about previous experiences, noise and distractions in the environment, affect, motoric problems, sense of time and space, etc.? One can easily imagine, following Williams' line of thought, how someone who has difficulties processing several things at one time may instead rely on "automatic processing" and the utilization of "cues"--in this case touch, affect, verbal and other cues coming from the facilitator--to help stay on task. On the other hand, Williams' theory about the need for cues to trigger already stored information also supports the notion that facilitation may be precisely what people are using in order to access their own thinking in some situations.
Williams describes, for herself, the complexity of differentiating her own self-expression from that which is cued by others:
"I accept and I celebrate my automatic and involuntary self- expression as long as it is not the mirrored expression of others or the mindless meeting of their expectations of assumptions. And yet it has taken most of my life to weed out one from its entanglement from the other. And I think it's important for so-called experts and facilitators... to tell the difference between these two things and to acknowledge that both of these things may co-exist."
Williams expressed well what I have felt for a number of years: the "entanglement" between the facilitator and the facilitation user is difficult to weed out at times. It takes thoughtful and responsible actions on the facilitators' part to aid in the disentanglement. It is my sense that repeated experience with facilitation and its consistent mechanisms of support may make it more and more possible for the facilitation users to attend to their own thoughts and movements, especially if we support them in this process of attending to themselves by using the various mechanisms which reduce possibilities of undue facilitator influence (see Schubert & Biklen, 1993). If we think of facilitation as a mechanism which supports the facilitation users' ongoing efforts at greater sensorimotor integration, it also makes sense that many facilitation users do make progress over time: they become more independent physically, conversationally, and emotionally.
Williams' second keynote speech at the conference was entitled 'Appear' vs. 'Be': The finding of me through 'automatic' poetry, music, art and writing. In it, Williams, who is clearly an artist with language, led us through her struggle in taking ownership of this medium, a struggle she is still involved with. Her poem, which she used to open that speech, gives us an inkling of this difficulty:
Tell me of language
I who cannot see your words
nor hold developed thought with conscious awareness
tell me of language
I who cannot experience the creation, only the product
words on the wind
words on the wind
like falling birds they fall
from a sky that does not exist
with a thud that is not even heard
Having felt disconnected from experience and from words as a child, Williams only claims her self through her struggle to claim language--her own language. Connecting personhood with self-expression, Williams explained,
"It didn't matter that personhood was meant to be more than a bundle of stored regurgitable information, mimicry and mindless compliance. For a long time, as far as I knew, this may as well have been my personhood."Her struggle to go beyond mimicry involved her fingers:
"The subconscious self-dialog within me fought with me and gradually guided me to what's giving it a voice through my fingers. I did that with a pencil, with a paint brush, with keys of the piano, and with the typewriter. It became my truest friend and it gave me the gift of selfhood, a mind of my own. Without that all that I had to share with others was the patchwork facade of stored repertoires that had been programmed into me."While Williams never used facilitated communication as we know it, she continues to feel most comfortable expressing herself through the written medium.
Connecting personhood with self-expression, particularly through language, as Williams did, is a complicated issue. On one hand, we can easily agree that self-expression through a variety of media aids each of us in understanding ourselves and others, and enables us to grow. (Notice, I am again not differentiating between people with autism and those without it). Yet, I would hate for us to think of people who have difficulty with conventional self-expression as people who need these means first in order to "be" and to "grow" as a person.
Instead, what I take from Williams' emphasis on a variety of means of self-expression (e.g., piano-playing; painting) is the reminder to look for and welcome all means of self- expression, however unconventional they may be.
Williams also reminded me that for all of us, including people with limited means of verbal expression, self-expression or inner dialog is a significant part of communication. That is, answering questions, telling people what one wants, or even conversation aren't the end-all of communication. An "inner dialog," as Williams called it, helps us to sort out who we are vis-a-vis ourselves and others. Obviously, this inner dialog can take on any form and may never be formed in words. Yet each of us may be of significant support to persons using facilitated communication if we provide them the opportunity for such a dialog, by creatively discovering with them their means to self-expression, as Donna Williams did for herself.
HUMANITY
Humanity, is that another question?
So many questions never asked
Curiosity unheard and yet peripherally understood
With less conscious contamination
A mind may grasp complexity at the expense of what is simple
Affected yes and understood
but aware of the affect and understanding
unaware of overwhelming self-awareness
waiting for connections that never came
humanity owned in unknown knowing
not knowing it nor in what depth
To know what it is to be touched in your soul
with the depth and enormity too great to be held in your own hands
With time all sinks in though disconnected
acquainted with emotional effect
These are our glimpses, not of the world but of another
The world without so many wars or walls
In the full I am saying in the silence can you hear me?
In the void I am dancing in the darkness can you see?
In the nothing I am breathing, in a vacuum don't give up
I am holding steady, nothing can take me from me.