Since I first learned about facilitated communication and started using it in 1991, I have spent more time thinking about this method and about communication in general than about any other topic. I have come to realize that service providers — including myself — have previously paid too little attention to enabling people with severe disabilities to communicate in more and more complex ways in order not only to express themselves but also to control their own lives to a greater degree. Granted, we did not have the understanding and tools which we needed, but even so, we did not continue to try to develop new techniques because we had mistakenly thought that gains in communication were not likely for many people with significant disabilities who did not point effectively. We believed that people lacked understanding, and we did not realize that problems with finely coordinated movement control could prevent some people from demonstrating their intelligence and understanding. We have had to rethink our previous conclusions and to retrace our footsteps and to renew our efforts since learning about facilitated communication and movement differences and new ways to understand disabilities which affect speech and movement. People who have learned to communicate via FCT have been teaching us about their disabilities and letting us know that we have much to learn.
Strategies for empowerment and self determination fall sadly short when families and service providers must do much of the guesswork concerning what an individual really wants to do or learn. Granted, when a person does not point consistently, it is extremely difficult for him or her to use augmentative communication methods, but it is also vitally important to keep trying. With facilitated communication training, many of the individuals whom I previously knew as "nonverbal", or as having very limited speech, are now able to communicate in much more complex ways. This has been an extreme surprise in many cases, but a very welcome one indeed.
Since facilitated communication depends on another person providing specific individualized support and movement accommodations to help the individual with a communication impairment to overcome hand function problems, that individual's basic right to free speech literally depends on others making access to free speech possible. This reminds me that none of us can be truly free unless all of us are free. Therefore, our freedom rests on our assuring that others have it, too.
With that in mind, I have tried to imagine what it might be like to be a person with a severe communication impairment and motor disturbance who is presented with the method of facilitated communication training. I have tried to be a good listener and to take to heart the statements that some of these individuals have made regarding their situations and their concerns, adding to my growing list of insights and questions. The following is a compilation of some of the thoughts, insights, and questions that have been my frequent companions since my first experiences with people using facilitated communication.
WHAT IF ...?
WHAT IF you were born with the mind you were born with, understanding what goes on around you, but unable to let others know that you understand?
- Your body either does not move the way you want it to or when you want it to,
- Does not stop moving when you want it to,
- Sometimes does the opposite of what you want,
- Sometimes (rarely) does exactly what you want,
- You cannot always point to what you want (sometimes you point to the thing you do not want),
- You cannot point to objects, words, pictures, or symbols of what you mean,
- You cannot lead a person to what you want or mean,
- You cannot do well on intelligence tests because you cannot point consistently or control your body as you want to,
- And either your voice often says words that are not what you mean, or
- Your voice only says a few limited words, phrases, and sentences, making people think you don't understand much, or
- Your voice only makes sounds but not words, or
- Your voice seems to have a mind of its own, rambling on, immediately repeating things you hear, saying words and sentences that are sometimes not what you mean (although some words are what you mean).
- Your companions talk to you about a limited number of topics (what they do, food, weather).
- You desperately want to feel normal, act normal, and be accepted as normal.
- No one asks your opinion because you are considered "non-verbal" and therefore non-thinking.
- People meet around a table and discuss your life, your habits, your shortcomings, your disabilities, your job, your home, your everything, and you are unable to participate because you cannot communicate effectively.
- You have terrible fears and difficulties coping with your world and no one understands,
- You want to meet and make friends with "normal" people but you don't know how.
- You want to fall in love.
- You want someone to fall in love with you.
- You want to make a difference in the world.
- You want to be listened to.
- You want to control your life, to overcome your unusual mannerisms, and to learn dignity and trust and kindness.
- You want to finish high school, earn a GED, go to college, or just have an intelligent conversation.
- And all you have available to you is a world where none of this seems at all likely.
And then someone tries facilitated communication training with you to give you access to letters, words, phrases, sentences, pictures, symbols-a chance to develop effective communication.
- What do you think?
- What do you feel?
- What do you hope?
- What do you say?
- What do you do?
- What if no one thinks you are really smart?
- What if no one believes it is really you communicating?
- What if no one thinks you could possibly have learned to read or could learn to read with more instruction?
- What if your facilitator is satisfied with you pointing to pictures and does not give you the opportunity to move on to spelling using a letter board or computer?
- What if no one asks you anything important?
- What if everyone asks you silly questions that every six-year-old would know?
- What if they ask you too many questions too fast and you can't handle so many questions at once?
- What if you are too nervous to try facilitated communication for several days or weeks or months?
- What if every time you try FC, you get too upset to do it well?
- What if your first facilitator is the only person you can do this with?
- What if you forget how to get your body and thoughts organized in order to communicate by pointing one day?
- What if you need to talk and no one offers you their hand and the support you need to communicate?
- What if you have so much stored up to say that every time you try to type, it gets all jumbled up?
- What if your facilitator stops facilitating when you say something she or he does not understand?
- What if you are not good at answering questions yet?
- What if you are bad at remembering names?
- What if you tend impulsively to answer "YES" if you are rushed to answer a question – even if you mean to answer "NO"?
- What if you type something that is not really what you mean and no one asks you to explain or gives you the chance to clarify or correct what you said?
- What if you make a mistake in something you say?
- What if you say something hurtful in anger and you want to apologize and take it back later? Will there be a hand and support available to communicate then? Will anyone listen?
- What if you make a joke and everybody thinks you are serious?
- What if someone moves your hand and changes what you are trying to say, even though they do not realize that they have done it? Will you have an easy way to let them know?
What if you have very little opportunity to talk by typing and you have something important to say and someone asks you a silly question like "Who is the President?" Do you answer them, or do you struggle to say what you really want to say ("I NEED TO CONTEST THE READING OF MY MOTHER'S WILL," for instance), and hope that they pay attention rather than saying "George Bush is the President. Now, what state do you live in?"
What if people continue to pay attention to your body which is not under control instead of checking to see if you want them to pay attention to your typing instead?
What if you continue to do silly, embarrassing, childish things even after you learn how to type what you mean? Will people think that you are not really smart, or will they realize that it takes time to change habits — especially old habits – especially old habits that are hard to control – especially habits that have served a purpose for a long time, if only to let people know that you are unhappy with something.
What if you struggle to feel and act normal, but people tell you that if you want to be treated as intelligent, then you must act intelligent first, and you try to make them understand that in order to act intelligent, you must first be treated as intelligent?
What if you can spell in your mind but not with your hand? Will people still think that you don't understand or will they realize that maybe they haven't provided the supports right to enable you to communicate? — and will they keep on trying? ... and trying? ... and trying?
What if you get frustrated and give up on yourself? Will they keep encouraging you and helping you to feel confident and successful and worth the effort?
What if you go through the extremely hard effort of concentrating, controlling your hand, planning what to say, answering questions, waiting for the next time a facilitator's support is available and then no one acts on what you type, no changes happen in your life, no one helps you really to change yourself? Will anyone understand when you become more easily frustrated and upset than before you tried facilitated communication?
Will they understand that being nervous and frustrated makes it even harder to talk by typing and that you really need them to hang in there with you? Or will they mistakenly decide (without asking you) that you don't really want to communicate?
Will they understand that
COMMUNICATING IS AS IMPORTANT IN LIFE AS EATING, BREATHING, WALKING AND SLEEPING?
Will they try as hard to reach out to you as they ask you to try to reach out to them?
Only time and trying will tell.
Nothing is certain.
The only real failure is not to try.
Communication enables us to direct our lives and to share our needs, our thoughts, our questions, our fears, our hopes, and our dreams. In fact, in many ways communication is the very essence of life. It is clear, then, that trying is imperative.
Learning together will happen — Whether with facilitated communication training or not — As long as we meet each other on common ground as equals, All of us open to changing and growing and learning from each other.