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"The Information Divide" and the Empowerment of People with Intellectual Disabilities

Proceedings of 16th Asian Conference on Mental Retardation, pp.13-17, 2003.
August 21, 2003
Satoshi Fukushima, Associate Professor, BARRIER-FREE Department,
Research Center for Advanced Science and Technology, The University of Tokyo

Good afternoon to distinguished guests, colleagues and friends. It is
a great pleasure to meet self advocates and your allies from all over
Asia.
We now live in the 21st century. Our life has become increasingly complex
and diverse in recent years. We are expected to utilize advanced information
technology in our society --- a society that some call the "IT society.
" And yet, as you know well, there exists a Digital Divide between people
who have access to that information and those who don't. To utilize information
technology, one needs to acquire computer literacy --- operation and
application skills of digital devices such as PCs. More specifically,
one must be able to read and write in order to access data in computers.

I believe, though, that the problem is not just about the Digital Divide
for people with intellectual disabilities in terms of operability and
functions. It is also a structural issue, which I would call the "Information
Divide."
There is a slight difference between people with multiple disabilities
including deafblind people like myself, who have trouble accessing any
kinds of information, and intellectually disabled people who may have
trouble processing or using information. Yet, the problem of the Information
Divide is common among us.
Now then, how should we deal with this issue? What can we do to cope with
this problem? With the key concepts, "information and communication,"
let us examine this problem we are facing. First, let me share my own
experiences.

I lost my sight at the age of nine and my hearing at the age of eighteen
and to become totally deafblind twenty-two years ago in 1981, which happened
to be the International Year of Disabled Persons.
Though I had been totally blind, I could not understand how entirely different
it was to be totally deafblind until I turned out to be so myself.
Transition from being blind to being completely deafblind at the age of
eighteen was an enormous shock for me. It was as if the "real world"
had simply vanished from me.
I felt as if I had been thrown into outer space on the "night side" of
the earth - the dark, vacuum-like, weightless space where the light from
the sun could not reach. It was an experience of absolute emptiness and
solitude.
Why was I struck by such an enormous shock when I became deafblind? Was
it because I would never again behold the beauty of a starlit sky or
the sea at sunset? Or, was it because I could no longer wake up in the
morning to the song of birds coming through an open window? Or, was it
because I could never again listen to the beautiful melody of Bach or
Mozart?
I would say "No" to all these questions. It is true that I miss the scenery
and music that I used to enjoy. Yet, the most painful part of being deafblind
was not the loss of sight and hearing itself but the loss of communication
with others.
I was taken by surprise. Till then, I had never thought of communication
as having such importance. I meditated amidst the fathomless solitude
and distress. "Perhaps one can still live without sight and hearing.
But can one really live deprived of communication?"
I was left in a state of despair. However, the time came when I would
be liberated from the jail of darkness and silence. There were three stages
in this process of liberation.
The first was the acquisition of a new communication method. In my case,
it was the discovery by my mother of a new method called "Finger Braille.
"
With this method, I was able to regain communication with others, which
revived my desire and courage to live.
I entered the second stage of liberation when I was blessed with people
within my immediate circle who would communicate with me using this new
method.
The third stage of liberation came when I was provided with interpretation
services on a stable basis, which guaranteed me freedom of communication.

?
Through these experiences, I have come to realize that for people with
disabilities there are three keys to liberation that is, keys to independence
and social participation.

The first key is the provision of the basic means necessary for disabled
people to live. It also means encouragement for each and every disabled
person to maintain his or her desire and courage to live. This includes
efforts in education and rehabilitation.

The second key is the cooperation of people who have actual contact with
disabled people in their living environment. In particular, mutual cooperation
among peers who have the same disability is very beneficial.
This includes self-help efforts on the part of a disabled person and his
or her family as well as changing discriminatory attitudes of the general
public towards people with disabilities.

The third key is the legal and institutional framework of a society that
should offer a stable basis for people who support disabled individuals
with their pursuit of happiness. This includes the enactment of laws
that respect the dignity of people with disabilities by prohibiting discrimination
based on disability and the establishment of institutional systems promoting
welfare and employment of people with disabilities.
In other words, the first key is the empowerment of the disabled people.
The second key is the support by peers, and the third is the establishment
of an institutional infrastructure that includes a legal framework.

Next, let us look at how “communication” and “information” are linked
in terms of those key elements, as well as how IT can contribute to the
liberation of people with disabilities and what its limitations are.
??
First of all, what is “information"? What is "communication"? According
to one dictionary, "information" is defined as:
[knowledge through various media, necessary to make judgment and take
action]
"Communication" is defined in the same dictionary as:
[an act of passing senses, emotions and thoughts between humans who lead
a social life]

Of course, those definitions are not sufficient when we consider the
ambiguity and diversity of current contexts for "information" and "communication
" and there may be other possible definitions. Yet, when we do compare
these two terms, one important fact emerges. There is a qualitative difference
between "information" and "communication" in terms of their concept.
Whereas "information" as knowledge is a static and in a way physical
presence, "communication" is a dynamic process that takes for granted
the existence of people who are agents of communication and the act of
communicating.
Now allow me to take the example of the Bible. I must ask for your kind
tolerance to refer to the holy book of a particular religion, of which
I am not a believer. But I believe this reference is to be helpful.
Suppose there is the Bible here. Physically, the Bible itself is simply
"information." Regardless of its medium, whether it's a book made of
paper or electronic book on compact disc, or whether it's written in English
or Japanese or another language, the Bible is merely "information." However,
the moment a minister or a priest lectures in a church or church members
discuss its contents with other members, those contents begin to assimilate
to the process of communication and move with time. It has become a presence
that can influence the actual lives of people. Thus, despite their similar
impression, "information" and "communication" are actually different
concepts.
Now, let us examine the characteristics of the IT-oriented society.
I believe one important characteristic of the IT society is that all people
can obtain as much information as possible through a variety of information
media, and they are encouraged to process and utilize that information
instantly. Along with the progress of the IT-oriented society has come
the problem of the "Digital Divide."

Let me go back to the example of the Bible. If I compare the troubling
patterns regarding the "Digital Divide" to those regarding the Bible,
they are similar in this way: if one cannot obtain or afford a copy,
or the language written is not one's native tongue, or the printed words
are too small to be legible, or there isn't enough light available to
read, or either the copy is too old or certain pages are stuck together
for some reason one can not separate them.
Those troubling patterns could also happen with the use of IT devices:
one may not be able to purchase a computer for social or economic reasons
in his or her country, the region or the family. It could be the compatibility
of software. Or it could be physical conditions of that person such as
impairment or advanced age, as well as educational and cultural conditions;
for instance, one having trouble seeing the words on the screen, reading
the instruction manual, or typing.
Those difficulties in accessing an information medium can be solved by
improving or modifying the device.

Please think about the “contents” of the Bible, the teachings of Jesus
Christ. Even if one's copy has the best bookbinding or the most legible
printed letters or the brightest lighting condition that does not guarantee
that that person can understand the Bible easily. By the same token,
one cannot necessarily understand the contents of a certain computer program
if that person does not understand the significance, intention, and purpose
of the information.
What I'm trying to get across is that the most excellent IT won't mean
much if it's not properly understood by the user. I believe that the
problem of the "Information Divide" lies there.

There must be a large number of people in the world who cannot easily
understand "the contents of the information" --- those are not just people
with intellectual disabilities, they are also the deafblind or those
with multi-disabilities or under educational restrictions. Now then, how
should we resolve the problem of the "Information Divide"?

I believe the key to that is communication with others. Again, it is similar
to the case of the Bible: it is important not only to improve availability
to the Bible and legibility of its letters, but also to have a priest
or minister and other church members who can help you understand the
contents.

In that respect, one can expect to see the development of information
technology that is valuable to every single person, along with communication
-assistive technology, which would help in understanding the contents
of information.

And this assistive technology should always include "personal communication
support" as an important element.

Previously, I have mentioned the important elements in the liberation
of people with disabilities which include people with intellectual disabilities:
the first key, the empowerment of the disabled people, the second key,
the support by peers, and the third key, the establishment of an institutional
infrastructure that includes a legal framework.

I believe that IT can greatly contribute to each one of these. The first
thing to do is to make an effort to eliminate the "Digital Divide." But
that's not enough. What we need increasingly is a broad support for communication
in terms of both technology and people, which can also help bridge the
"Digital Divide."

What is the ultimate goal of our society? I think it is to support each
other so that every individual in our society can pursue his or her happiness.

It is certainly convenient that we can use a great deal of information
in pursuing our happiness. However, I would like to emphasize one important
fact here: the realization of happiness for a person and the amount,
quality or complexity of information that person can obtain and use, are
two totally independent variables.
The utilization of information is merely a means of pursing happiness,
not the goal. Likewise, thousands of words used in the Bible are just
a means, and the sole purpose of reading the Bible is to realize the
value that can be summed up in one word, "love."

We, the people, including those of us with disabilities, do not wish for
more information we can use nor faster speed and better efficiency in
processing information. What we wish for is to live a spiritually rich
life with others.
For this reason, our most important task is to eliminate the psychological
barriers that we all tend to build subconsciously. Stated differently,
we need to tear down the "Information Divide in mutual understanding
of human beings."

I firmly believe that rich interpersonal communication at a deep level
is the only solution to eliminating that Information Divide.

Dear friends, let us walk on our path together.

Thank you so much for your attention.


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