[Sigia-l] Communication as design

[Ziya Oz]

Don't mean to get overly sentimental here but, after you heard your 287th
exchange on what a designer is or some other equally fruitless debate,
here's a searingly different perspective on our most precious gift as
designers: ability to communicate.



Despite the technology, communication is still a considerable challenge for
these people. To operate the TTD [Thought Translation Device - converts
movements into words] requires months of arduous training, and the failure
rate is high. Last year, in the journal Neurology, Birbaumer and colleagues
described a particularly tragic case of failure (vol 67, p 534). A
46-year-old German woman who had been diagnosed with the degenerative
disease amyotrophic lateral sclerosis [ALS], also known as motor neuron
disease, had made it clear that she desperately wanted to live. By the time
she came to Birbaumer's attention, she had already been locked in for a
year. After trying in vain to train her to use the TTD, they decided her
chances might improve if they implanted the electrodes in her brain rather
than sticking them to her scalp. For this, they needed her consent, which
she clearly couldn't give. Impasse.

Then, walking past an electronics store one day, Birbaumer's colleague
Barbara Wilhelm spotted a medical device for measuring the pH of saliva, and
had an idea. They trained the woman to change the acidity of her spit by
imagining either the taste of lemon, or the taste of milk. She learned to
push the pH one way to say "yes", the other to say "no". When they asked her
if she agreed to them implanting the electrodes, she replied yes,
repeatedly; three hours later, however, she lost control of her salivary pH.
The electrodes were implanted, but she hasn't achieved any control over her
brain activity. Birbaumer is still trying to tap into other potential
channels of communication, but he fears that after a certain time locked-in
patients may lose the capacity to control anything voluntarily.

<http://www.mindhacks.com/blog/2007/08/locked_in_with_the_b.html>

Don't quite know what to say.

--
Ziya
Nullius in Verba