2009 Symposium
The Interface Between Freedom and Agency
INTRODUCTION
Few people have read or watched the film adaptation of The Diving Bell and the Butterfly without proclaiming it a triumph of the human will. Jean-Dominique Bauby authored the memoir after suffering from a major stroke that left him paralyzed from head to toe with minor exception, but with his mental capacities intact. He did so through a novel form of dictation. Slowly and repeatedly a transcriber recited a French language frequency-ordered alphabet, to which Bauby communicated his story through the blinks of his one working eye. When the transcriber reached the letter of the word Bauby wished transcribed, he blinked once. He signaled the end of a word with two eye blinks, and used rapid eye blinks to communicate that she had guessed a letter or word ending incorrectly. Letter by letter, blink by blink, Bauby conveyed his thoughts to the transcriber. 200,000 blinks later, the story was done. His memoir provides the gripping detail of what it means to have full mental capacity and lack freedom of action to express one’s thoughts, desires, emotions, and expressions of humanity. That he could share his story is at once extraordinary and tragic that anyone should suffer the fate of such obstacles to effectuating his will.
Today, Bauby might have instead used a revolutionary new environment. An emerging technology known as brain-machine interface is under development to transmit information to the brain from the external world, but also to translate brain activity into action on external objects in the world.1 Cyberkinetics Neurotechnology Systems, Inc. has developed a brain-machine interface technology that connects the motor cortex of the brain to a computer, enabling a subject to move a cursor on a computer screen, to check email, to change the volume, and to select or move anything on the screen that would be possible with cursor movements by simply thinking about hand movements, without moving any part of his physical body.2 By connecting Bauby to this brain-machine interface, he might have typed out his memoir himself by thinking about the letters of the words he wished to communicate.