Yes, I’ve been quiet lately. I try to at least leave bread
crumbs of hope in my blog, and there isn’t a lot of that to go around. I’m
to a point where I don’t have a clear path to what I should do next. Without
that, I’m only rehashing old material. We have heard reports lately of a
“locked in” quadriplegic who had electrodes implanted in his brain,
and is now learning to use them to control sounds made by a computer. The ultimate
goal being to make the computer talk for him.
Sorry, I don’t remember the guy’s name, or all
the details of the project. Yet, some obvious issues come to my mind. Wouldn’t
it be much easier for his thoughts to tell the computer what he wants in more standardized
input forms, input to any program that computer can run? That would have
to be simpler than to guide it through all the sounds that even an average
sound card can generate. Humans can speak because both our brains and our
speech organs are optimized for that. A computer’s ability for creating
sound is much less specific, and thus would require considerable concentration
to make it understandable to listeners in real-time. If the researchers intend
to optimize the computer for speech, why start from scratch? Why not build upon
software that already tackles that step successfully? Consider this: if I could
“thought-type,” Xpress-It would allow me to converse as freely as
anyone. That same interface also would allow me to create and debug software at
a pace fast enough to send other developers screaming into the night in a blind
panic.
The point here is really that the limited goal of that project,
to teach a disabled person to speak by controlling a computer sound system is
rather emblematic of the narrow-focus approach taken by many in assistive communication.
How is learning to make specific sounds going to enable that man to earn a living
or manage his life? Perhaps it will, but I don’t see how. To me, it would
be far more enabling to teach the gentleman overall use of that computer, to
earn a living, run his own life, and—oh yes—talk clearly. Unfortunately,
I’ve yet to see anyone in the rehab sphere really doing that. Instead, the
norm continues to be to treat computers as dedicated single-use devices. I suppose
that’s why computer hogs like EZKeys continue to do so well.
Of course, the Words+ rep was correct in pointing out a fundamental
problem in marketing something like Xpress-It. She admitted that it had certain
advantages over her products. She also said Words+ was working to make their
products more like Xpress-It. Yet, Words+ has one big advantage I can’t match:
a marketing budget. The people in the rehab community stick with vendors they
know. That’s not as cynical as it might seem. Speech pathologists are
just people too. They know speech pathology, but not much about computers for
the most part. They know Words+, and so that’s who they trust. I really don’t
see how I can raise awareness enough to overcome that. How do I get people to
broaden their rehab goals from just helping the Disabled simply communicate to
empowering the patients to take back control of their lives? That’s a
question I’m still struggling to answer.
Let’s face it, I wouldn’t be eager to recommend
Xpress-It if I were a SLP. After all, the vendor—me—is down to a
less-than-one-man operation. But, Xpress-It’s simple design is meant to keep
its support burden to a minimum. That, and a steady flow of orders would turn
my tiny company into something quite robust in short order. Still, that won’t
happen unless I can somehow get the people who do the actual rehab work to take
a more holistic approach to the process instead of going at it piecemeal.
I am frequently told I have an outstanding setup, referring
to my wheelchair and the stuff on it. Maybe, but you’re unlikely to see
the technology reach others who need it anytime soon. It’s not that
complex, but it is beyond what most people in the wheelchair business know. The
few who can understand it, are prohibited by their manufacturers and insurers
from reproducing it. So, how do disabled people who need this technology and the
freedom it brings gain access to it? In short, this is the classic question of
how do you alter the perception of a community to be more open to different
technology? Sticking electrodes into someone’s brain is all well and
good, but the true value of that project will be subsequently determined by
what the electrodes are connected to. Don’t stop with just some sounds. Give
the man full access to a good general purpose computer and prepare to be awed!
It seems to me that the only reliable way to change a
community’s established response to technology is on the inside. Community
members who become aware of new, potentially helpful technologies have to take
up some degree of responsibility for fostering their growth. If you think an
idea has promise, ask what you can do to help. Even if you don’t think
the idea is perfect, your input will probably help to improve it. Also, your
colleagues are considerably more likely to weigh your perspective on a product
or technology than that of an outsider like me. Please get involved in
technology advocacy.
I’ve remarked that it seems my only lasting legacy to
the public will be the words in this blog. That saddens me because I know I could
offer more tangible contributions. Still, a lot of what I talk about pertains
directly to the challenges disabled people face in our society. The hope
is that someone somewhere will benefit from my experiences and thereby enact my
minute contribution to society. Great. I guess that’s better than
nothing.
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Disability in America 