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In 1995, Marie-France, a mathematics lecturer at Paris VII University, was
diagnosed with Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's
disease. She is now almost entirely paralysed, unable to speak, and has had a
tracheotomy, in order to breathe.
Despite these overwhelming difficulties, Marie-France does the shopping, writes
to family and friends, helps her husband with his research and maintains a web
site. This is possible thanks to her Macintosh computer and special assistive
technology. Marie-France describes her daily routine, in her own words:
“As I am almost completely paralyzed and my hands do not move at all, it is
impossible for me to type on a keyboard or use a mouse. Therefore, I use a
scanning program called SwitchXS. This allows me, through the aid of a switch,
to control the scanning of one or more keyboards designed by myself.
The switch is a little device that is taped to my cheek; all I need to do is
make small jaw movements to activate the scanning. As I do not speak, I use the
speech synthesis of Proloquo which also helps me when I write. It allows me to
verify that what I write is in accordance with what I want to write. I developed
a rapid writing method based on a pretty complicated writing keyboard.
I also use the KeyStrokes application, which offers the possibility of
entering as many abbreviations as I want and, in addition, offers word
prediction. This allows me to write about four times as fast as when I would
have to type each letter. SwitchXS also allows me to communicate with my husband
through iChat, when he is at his desk and I am at mine. It also allows me to
help my husband with his research work.
The computer has also allowed me to create a web site about my illness, the
illness of Charcot. The site provides me many contacts with other ill people or
their families. Without the computer, I would be little more than a vegetable. I
can say without exaggeration that the computer has saved my life. Without SwitchXS I would not have access to Mac OS X, which has changed my life.
Thanks to all this technology I continue to play an important role in the
household, because I am the one taking care of the groceries, the one managing
the bank accounts and the one keeping contact with our friends.”
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