ROUGHLY EDITED FILE
ITU WORKSHOP ON ACCESSIBILITY
BAMAKO, MALI
WEDNESDAY, OCTOBER 14, 2009
9:00
SESSION 4: SOCIAL AND ECONOMIC ISSUES:
THE ROLE OF ICTs IN THE INCLUSION IN CIVIL SOCIETY
OF PERSONS WITH DISABILITIES,
INCLUDING WOMEN AND PERSONS WITH MENTAL CHALLENGES
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This text is being provided in an unedited format. Communication
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verbatim record of the proceedings.
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>> ANDREA SAKS: Good morning, ladies and gentlemen. We'll start
the second day of our workshop.
We are going to start in one minute, please. Can you hear me?
Good.
Good morning, everybody. Can you hear me? Good morning,
everyone. Thank you for coming back. I'm very pleased to see many
faces I saw yesterday, and some new ones. I would like to welcome
you to the second day of the ITU Accessibility Workshop and
conference. What I would like to do today also is to make a small
announcement before we start. I have asked two members, one I have
successfully reached, the other one I have not, to maybe move their
presentation forward, because we got such a good response for
sessions for many countries and young people who wish to make a
presentation about what is going on in their country. We wanted to
give them more time to be able to speak.
So I have asked Mr. Moctar Bâ to move and he's agreed to speak a
little earlier and he'll be speaking the case study of Mali, he'll
be doing that in session, I have to look myself here, which one did
we decide? Oh, we're going to put in session 6, so this is best
practices for e-accessibility and ICTs that will be starting at 2:00
so he'll be starting one session earlier.
I'm hoping that Youssouf Diakite will be here because we want to
give as much time to the many participants that came prepared and
more than we thought which is wonderful. End of announcement.
We're going to start today with the first presentation, and I
would like to introduce to you, get my papers ready here. Professor
Arun Mehta the President of the bi-directional access promotional
society in India. He'll be talking about ICTs for children, and
children with mental challenges so I would like you please to take
the stand and he'll begin his presentation. So thank you very much
for your patience in our late start.
>> ARUN MEHTA:
Thank you, Andrea. Ladies and gentlemen, it is a great pleasure
to be here in Mali, and I thank my friends for inviting me and for
the great hospitality.
I believe that it is very important that form and content should
be in harmony, so the software that I will use to make this
presentation is software that a person with a severe disability,
somebody who can only press one or two buttons, can use to make a
presentation.
So even if you cannot speak, this software which is free and
open-source, allows a person to make a presentation where the
computer speaks for you. Unfortunately, the audio is not very
well -- you may not be able to hear it. I will try with the
microphone next to the speaker, but please trust me, in this
presentation, the computer is reading out the text of the title
only.
I can, of course, set it to read the entire presentation or say
something quite different. I need to have the mic -- okay, you have
an audio Jack? I need the mic. I don't need the computer. I have
this, thanks.
Okay, so I only need to press one button, so this is the one.
I'm sorry. Okay. What is on the screen is a picture of Professor
Stephen Hawking with the one button in his hand with which he
communicates. And you also see me in the picture. For me,
Professor Hawking has been a great inspiration, and the motivation
for getting into this area. And he can with this one button, he can
do a lot of things, as we saw yesterday in the presentation from the
gentleman from Switzerland where a person is able just by moving his
head, do everything, Professor Hawking can do even less than that.
For him, the head motion and so on is not good enough, nor is the
eye gaze tracking good enough. He can only press one button and he
still does everything with it. Now -Interestingly, if you go to his website, what he says about his
disability, there is a page on that. He has ALS which is a very
rare condition, and what he says is that actually, he doesn't think
very much about his disability, because there are very few things
that he would like to do that it is preventing him from doing. So
why is it that not every disabled person can also say the same
thing? Here is a person who's extremely disabled and he doesn't
notice his disability that much. That's quite amazing.
Now, the problem is not the hardware. Even a mobile phone is
powerful enough, as our Japanese friends were explaining, to do most
of the functions that Professor Hawking does with his hardware. The
problem is, of course, in the software, and that's what we have
focused on.
Now, in my presentation, I will be focusing a little bit on
autism because that is complicated enough to try and explain what
are the communication problems that we have in autism. There are
many other kinds of mental challenges, of course. Andrea spoke
about dyslexia a little bit yesterday, and cerebral palsy and slow
learners, there are many different kinds. And even within a
condition like autism, no two people are alike.
There is an excellent book which explains the sorts of problems
that people have with autism that is called "brain behavior
connections in autism" by Nancy Minshew and Diane Williams. Now,
what they point out is that first of all, depending upon when the
problem started, supposing if it started during the pregnancy of the
mother, then if the problem happened in the first trimester, then
the formation of the brain itself is affected.
If it is in the second trimester, that is the time when neurons
in the brain are multiplying rapidly. So if you have a problem at
that time the number of neurons may be very few or it can also be
very high, so there are persons with autism who are quite brilliant
in some ways.
And of course, in the third trimester what you have and also
after birth, what is happening is that interconnections between
different parts of the brain are being formed. So if you have a
problem at that time, then trying to do activities in which more
than one part of the brain is involved becomes difficult. And then
also the damage may be a result of some poison, some virus, and a
weakness in the immune system. Actually, the condition of autism
has been very poorly researched and is very poorly understood.
There may be several conditions that are being lumped into one
and called autism. But the sum total of all this is that each
person with autism has a completely unique profile of abilities that
are working and are not working. Okay. Now, the basic brain
functions in autism are typically okay. That means, you can listen,
you can see, you can remember, but the problem comes, as I
mentioned, when you have to use different parts of the brain
together. Those are what you might call the higher-level functions
of the brain.
You'll see I'm just pressing this one button to take me forward.
All right. Now, a simple question like: What is the object in your
hand -- requires different parts of the brain to work together. The
sense of touch, then vision, and then recognition. And also, if
somebody asks a question like this, the person is expecting an
answer fairly quickly, and so you are under stress, as a person with
autism in that situation, and it becomes very difficult.
Similarly, writing with the hand, this requires a coordination of
a large number of muscles. And that doesn't work for many people.
Memory for complex material, higher-order language, flexibility.
This is a very, very key point. If one strategy does not work, are
you able to adapt another? Can you find a different way of doing
the same thing? This is something that persons with autism usually
find very difficult.
And then, of course, the huge, huge area of concept formation,
insight, judgment, age-appropriate behavior, these are all concepts,
and we require them all the time. And if you have a problem with
concept formation, then very, very quickly you have problems in
education.
Then there is a problem with the senses, and the very first
workshop that we did with children with autism, we discovered that
there were some for whom the mere sense of touch was almost
unbearable so for them to touch the mouse or the keyboard was very
difficult.
There were some for whom glare of the monitor was impossible to
bear, so I had actually one participant who was looking at the
monitor like this from the side of his eyes, because only the tiny
amount of light was what he could tolerate. What is fortunate is
that these problems reduce with age fortunately.
But where does the problem can come from with the senses? One of
the problems is that the ability to filter information is also a
higher-level function. Now, when you are looking at me, you are
simultaneously seeing many screens, the people on the stage, and so
on. But you are filtering most of that out. You may be hearing
other sounds but you are filtering them out. A person with autism
is not able to do so. So you are being constantly bombarded with
information from all your senses, and so there is a constant state
of information overload.
Yesterday we had an excellent example in the Japanese
presentation where if you break up the sentence into three parts and
say first, go wash your hands, and then start eating food. If you
break up the instructions into simple sentences that works better
than making a complex sentence. Because with the complex sentence
you have to first understand one part, store it in your mind, then
understand the other part and then combine the two parts and that is
a problem.
The proof is in the eating. This point was also made yesterday,
that you really have to get feedback from the person in order know
whether the person has understood what you have said. You will very
often hear, like, what I have written here, which is people will
say, "I know he knows the rule. He says the rule while he is doing
what the rule says not to do."
So what happens is that the child is using the memory function to
remember what you said, and then to reproduce that, without having
understood. So the way to find out is if you're actually getting
action which works according to the rule. So communication with
persons with autism is different. It's not impossible, it works.
But it is different.
One, the person with autism because one of the reasons is because
of the problem with concepts and higher-level constructs. The
person with autism may not exactly say the correct word for that
situation, and is dependent on the other person to understand that
what the person with autism said actually means something else.
There are some good examples in this that I could give you, if you
are interested further.
But basically, it is when talking to a person with autism, it is
a good idea to work with facts and rules, simple, and do not
attempt, as we would very often do, to say, okay, here are some
examples from which you can generalize and arrive at a reason for
doing this.
In this book -- all of these by the way are from that same book,
all of this information is from this one book that I cited in the
beginning. They do not in this book talk about the use of computers
by persons with autism, but I have identified several kinds of jobs
at which persons with autism should do very well, jobs where what
has to be done is very, very clear, where the instructions are very,
very clear, and even if you have to do the same thing over and over
again all day, a person with autism will generally not have a
problem with that.
So how do we communicate with persons with autism? So first of
all, we look to see which senses work better, so if some senses
are -- if a person is very sensitive to loud sounds, you do not use
sound. If a person is very sensitive to glare and bright lights,
you do not use those. You try and reduce the amount of sensory load
that the person is facing.
You reduce the content the to essential information. So what
they say in the paper is that the kind of directions that you would
have on a can of soup is a good example. "Open the can, put it into
a pot, boil, stir for 2 minutes." That is the kind of instruction
that works.
Now, if you -- how do you teach a person with autism? How do you
get a person to remember complex things? Well, provide the
information in small, simple chunks. Take time. Do not expect
things to move fast. Be very patient, do not get the other person
stressed. And you might leave the material with the person with
autism so that the person can take it home to a comfortable,
recognized environment, a place where the information overload is
are reduced, and can in her own time process the information.
These are the sorts of things for which a computer is really
very, very helpful, because a computer has no problem with how much
time you take. You can take the computer everywhere, and depending
upon how you've designed your software, you can also have it in
small, simple chunks.
A very common problem, and this is a very severe problem in
society, is if a person who is, let's say, a teenager is behaving
like a child. Now, again, age-appropriate behavior is a
higher-level function, and that is very often a problem. So just
because let's say the child is very good at math and is keeping up
with a 5th grade class in math does not mean that the rest of the
behavior of the child is also going to be of that same level. So
the educational system should be prepared for that, and should be
able to accommodate it, and work with it.
I did mention that there is a problem with the lack of
flexibility. So when you have new situations, when you have new
environments, a person with autism will take a long time settle
down. Will walk around, will touch things, and so on, look
underneath tables, whatever, and this is how the person is reducing
the stress level in a new situation with all the new sensory
overload. What you need to do in education is that whatever skill
you're teaching the person should be tried out in many different
circumstances. So, for example, if it's crossing the road,
different kinds of road. If it writing different kinds of
materials, different kinds and so on.
And really, this is, it is absolutely essential that society show
more flexibility in dealing with persons with mental challenges. So
this is the last slide relating to the information from that book
that I mentioned.
So what they say as the bottom line is that this is a person
whose brain is wired differently. The person has a different way of
thinking. Now, all that means is that you need to be a little bit
more imaginative, a little bit more innovative, in finding out how
to communicate and how to work with the person.
Now, what we tried to do was to extract out of this paper what
are the points that are important when you're trying to develop
software for a person with autism to communicate? So this is a bit
if of a repetition in that we should be small chunks, a lot of
repetition, allow different senses to interact depending upon your
choice, and design this for an inflexible person, that means, have a
very consistent sort of user interface across modules.
So my students and I, we have been developing software that we
call "skid." Skid stands for" special kid." This presentation that
I am making is with the same Skid software. The Skid software has
already about 40 modules. I'm using the presentation module.
If you ask me to go back in my presentation I'll have to switch
modules and use a different module which can easily be done but I'll
demonstrate that later.
Now, there are modules for writing, there are modules for doing
photo editing. There are modules for playing games. But each
module is really very tiny. It does a very specific thing. And
it's only about 20 to 30 lines of code, with which any programmer
can write reasonably quickly, half a day or a day. And, of course,
in the software, we allow you to turn things on and off. And now,
what we have is a common interface across the modules. One of the
reasons why each module is so small is that a lot of things are done
in common for all the modules and therefore there's a common
interface for all the modules.
Now, here is one example of a module. I can actually demonstrate
this module and I will a little later if I have the time. But this
is what we call functional literacy. This was developed at the
request of the National institute of mental health in Hyderabad in
India. What they use is even if you don't know how to read and
write, it is terrific if you have what they call functional
literacy. That means you can recognize things at least. So this is
a module that will help you in learning how to recognize.
So we have on the screen a large picture of cucumbers, and on the
left there are three small pictures. One is a picture of paprika
and a picture of carrots and then cucumber. The child is given the
opportunity to recognize these are cucumbers on the right. And then
it keeps presenting fresh problems after you've solved the first
one. I'll demonstrate that.
This is a different module. This is for example one of the
modules used in writing. This is the module that we call the back
space module. It allows you to delete text only. The choices that
are offered is how much text do you wish to delete? Do you wish to
delete one character, two characters, the whole last word, or would
you like to delete the entire sentence? So here is a set of very
clear choices that the person has to pick one out of.
And so there is not too much information on the screen. Only the
essential information for this particular situation. Now, different
people have different abilities as far as input is concerned. The
question that also came up yesterday. So we, for beginners, we use
a two-button interface. For children we like using something like
this which is a game controller that children play computer games
with. And, of course, children are very motivated to learn how to
use this, because once they learn how to use a game controller then
the entire world of computer games opens up to you, and that is, for
a child, very important.
But for people who are severely disabled we have our own little
development. Here what you see on the screen is a -- are switches
that we make ourselves. These are very, very cheap. They basically
consist of two springs. One spring inside the other spring and if
you just move the inside spring it touches the outside spring, and
is able to provide input to the computer.
So this is a very low-cost device. It costs less than a dollar
to make. And it doesn't require any great technical skills. We've
got a video on Youtube that shows how to make these switches and
even a person with very little strength in the hands can use a
switch like this.
Now, we are talking about -- how do we deal with the question of
flexibility? We have a system where it is very easy to develop
fresh modules so when a child comes with a special problem, we can
develop a special module for that. One of the children that I am
working with, the teachers want that this child should be able to do
multiple-choice tests, that they give the child a set of questions
and the child should be able to respond. They also want to know
whether the child has understood or not, even though the child is
nonverbal.
So currently I started actually this morning, we have -- we are
developing a module that will allow a child to do multiple-choice
examinations using this software. Now, so what we do is that we
actually volunteer and work with special schools, try to identify
children who could benefit from this sort of technology, who are
very keen to learn computers, and where the teachers and the parents
are also willing to share in the load.
And we even developed special software for their individual
needs. Now, how does the software get developed? Computer
engineering students, people who are learning how to write software,
have a big problem getting practical training. They only get a lot
of theoretical knowledge in college but the practical training is
missing. So during summer, they like to come to the industry and
get some practical training.
So we offer practical training free of cost to students who wish
to help us develop software for children with special needs. And we
use online collaboration tools such as dimdim.com to be able to work
together across distances so I am working with people in the south
of India, in the north of India, in Sri Lanka and I hope very soon
also that there will be some students from Africa who will join us
in this work.
I would invite you the please go to the website, skid.org.in
where you can actually use the software itself without installing it
in your computer and you will also find some links to Youtube videos
explaining some of these things a little better.
Now, some of these recommendations have already been talked
about, so let me -- we really need to put more resources into
understanding mental challenges. When people cannot communicate, it
is very easy to ignore their problems, and this -- at a time when
there are so many people clamoring for the attention of government,
they quite quickly forget those who are not saying anything, and
persons with mental challenges lose out on that ground because they
cannot communicate, they cannot organize and they cannot make
sufficient noise.
There is a severe lack of information on the subject, of all
kinds, even at the research level. And as was pointed out
yesterday, even the collection of information is not easy. You have
to really train the people collecting the information in order to be
able to even -- to be able to ask if there is a person with a mental
challenge in the family. Now, the U.N. Convention on the rights of
persons with disabilities is an extremely powerful instrument in our
hands, to get the government to start paying more attention to
persons with mental challenges, and we're doing a lot of work,
trying to do some work, in this area in India, and I'd be happy to
share that with people if they're interested.
But my main recommendation and there is a special slide on that,
is that what we need is an institution where there are people with
multidisciplinary skills looking to find solutions to individual
problems. It is fairly ridiculous that I do not know of -- I think
this morning, Axel told me about one lady in Italy who's doing some
work relating to ICTs for persons with autism. Other than that, I
do not know of anybody working in this area. It is really a tragedy
that this kind of a thing is left to a person like me. I'm not a
doctor. I don't know much about autism. And -- but there's nobody
else doing anything.
So about the institution. First of all, very clearly, the
institution needs to be doing research, because this is a new area.
We are still learning what the problems are. We very clearly need
to be looking at technology. What we have definitely established is
that children with autism are no different from other children in
that they love computers. And the computer is a very good way to
draw them out, to actually get them to push buttons, to actually get
them to do things, because that is absolutely essential. Otherwise,
you do not know if the child has learned.
There is a huge, huge need for support for the caregivers and for
the persons with mental challenges themselves. Because this is so
poorly known, and the problems are so severe, that when you come to
know that your child has a mental challenge, you suddenly have to -you pretty much have to become a researcher, a mother of a person
with autism is just about the best expert in autism that you can
find.
Capacity-building, this is talked about a lot, and this is really
very, very close the to my heart. I teach for a living. Now, I
will be making another presentation a little later on the importance
of teaching computer programming to blind people. I am very keen
that persons with disabilities themselves learn how to develop
technology, instead of waiting for people like me to develop
technology for you. It's not difficult to learn how to do
technology development. And frankly, for me, it is easier to teach
a blind person how to do computer programming than to understand
blindness with well enough to be able to write good software for a
blind person.
Then, of course, the entire area of policy making needs to be
addressed by an institution such as this, because as you've probably
discovered, unless there is a disabled person in the room, the topic
of disability does not come up. Even when the topic of disability
comes up, very often mental challenges still get ignored.
In a lot of legislation like the U.S. has very progressive 503
legislation which forces industry that if you wish to sell anything
to the U.S. government, it must be accessible. However, mental
challenges are not covered under that.
And what we need, and what this institution can provide, is a
good common platform, a safe space, where persons with mental
challenges feel comfortable, where members of the general public
feel comfortable, where people can at least come together, meet,
interact, learn each other's problems, and maybe find solutions for
them.
So this is my presentation. If I can take a few more minutes,
I'd like to demonstrate a few modules of the software. Thank you.
Okay, this module is nothing but a picture browser. You have to
do nothing, if you don't want to. So this is a very, very good
module for a beginner, for the first time when a person with autism
comes and sits in front of the computer this is what we use. You do
absolutely nothing if you don't want to. Right now we're looking at
pictures if of fruits. What happens after a while is that you get
bored of looking at pictures of fruits. So when that happens, what
you do is you push the button. And when you do that, now we have a
different kind of picture appearing. Now we have colors.
Unfortunately I'm not sure how well they're reproducing here so
let's move on, I'll press the button again. So now we have animals.
Right?
Okay, so you can start by simply looking at pictures, and that
will last you for a while. Having looked at the pictures, now we
can -- and having learned how to push a button, now we can take the
child to the second module.
I push the other button on this, and this module, as I was
pointing out in my presentation, is the recognize module. So here
we have a giraffe, a lion and some cows, and turn by turn, these
choices are, so now when it's on cow, I push the button. So it says
what this computer says correct, so now recognize lizard so the
computer is providing some audio instructions as well.
Now, supposing I make a mistake. Correct. So now recognize
kangaroo. So you can go on and on and on. And these pictures, of
course, will be customized to the needs of the child. So the people
whom the child knows, the teachers, the doctors, the friends, their
pictures, the places where the child goes to, the objects that the
child uses, you can even give a person with autism a camera, and
that also does work quite well, and you can put those pictures
inside.
So now you can -- so supposing now we're tired of animals. We've
learned how to recognize different kinds of animals. Now I would
like to do something else. So I go back to my picture browser
module, and I push the button that changes the, so now I'm on
drinks. Not very interesting. Let's find something more
interesting. Vegetables, also a little boring.
I'm actually looking for -- vegetables. Okay. We use this by
the way in our email module. When you want to send email to a
person, you just have to select the picture of the person whom you
want to send email to rather than writing the address and things
like that. This works, also.
This is one of my students. Okay, these are, I have a folder for
the pictures that I use in my presentations. Now we're on flowers,
let us say. So now I switch my modules and now I am recognizing
flowers. So I can keep on and on and on, just playing with these
two modules and I have learned functional recognition without too
much difficulty.
As I said, there are about 40 modules already in the Skid
software. I would be delighted if someone has further interest in
this to show some of those to you but we can probably do that
separately when -- I'm here till Saturday morning. I'm here all day
Friday. So if anybody would like to meet me, I'd be very delighted.
Thank you, ma'am.
[ Applause ]
>> ANDREA SAKS:
Professor Mehta, that was really interesting. I am not very
experienced in persons with mental challenges as far as autism is
concerned. And what you said is very significant, that we don't
have many experts in the field. But you're definitely an expert in
the field. Thank you very, very much.
The next person that I'm going to ask to speak is Fernando
Botelho, because he's going to sit here, and his slides will be
changed. Excuse me one second.
I have been asked if it's possible that we stop and ask Arun
Mehta questions now, and I think that's a fine idea. I'm going to
change the program a little bit further, because this is so
interesting, and Fernando has an interesting presentation, and we
have space in the next session, because of a cancellation. So
Professor Arun Mehta, can you make your second presentation in the
next session after the coffee break?
>> ARUN MEHTA:
Certainly.
>> ANDREA SAKS:
So carry on. Young ladies, do you have the microphones, please?
Would you like to ask a question? I'm going to say I'm recognizing
you, we'll open the floor for questions. Go ahead.
We are adaptable here.
>> MOCTAR BÂ:
Thank you, Madam Chairperson, thank you Mr. Arun Mehta for your
brilliant presentation. I think we've had a lecture of pedagogy for
autism. We are facing a great problem in our centers that take of
these children with autism.
There are prejudices for these children, and we have a problem of
trainers on autism. Three days ago, I went to the two Japanese
experts to the center for mental disabilities. They told us the
first thing a problem, and now we have just to hear a lecture, a
lecture. I would like to know if we couldn't have a separate on
what you have presented as a source of information so they can make
it available to these people at the center, and we find it very
important what you said, the use of the computers and all these.
Madam Gakou is here, too. Maybe she has something to say. My
request is if we can have the support of your presentation to make
it available to our experts right now. Thank you.
>> ARUN MEHTA:
I would be honored to be of any kind of help. I have already
spoken to Madam Gakou and I think on Friday we shall be meeting to
take this further. The software is free, it is open-source. It can
be downloaded but also as I said we are very, very happy to develop
special modules, specially for the needs of some individual child.
And so this is something that would require collaboration over a
long time. I think we are all very clear that things move very
slowly when you're training people with mental challenges. So this
is something that we are very prepared for. We would be very, very
happy to work with you on this. Thank you.
>> ANDREA SAKS:
Do we have other questions?
[ Applause ]
Would someone else like to ask another question? Could someone
give the microphone to the young lady?
>> PARTICIPANT:
Good morning, everybody, I'm Madam Gakou. I thank Professor
Mehta for his presentation. Yesterday in the corridor we have
discussed a lot because we're facing many problems to take care of
these children with autism is a special case. We don't understand
it because we don't have adequate training for them. We don't
understand the children. The other mental handicapped disabled
children, for them we understand their behavior. We have to
understand them better. We don't have adequate structure and we
lack the training.
We don't understand children with autism. What we need is
training of our supervisors, training for our supervisors, and I was
telling Andrea yesterday if they can help us find some training for
our supervisor in capacity building, and train them and build the
capacities for the only teacher who is there to take care of the
mental disabled children. Please help us have access to this
technology. Thank you.
>> ARUN MEHTA:
In my experience, the people who have done the best work in the
field of autism are mothers of children with autism. There are some
NGOs that I am familiar with in India, and they have been using a
wide variety of techniques and methods. They use sensory behavior
modification, they use massage, dance, music, a lot of different
such interventions, simply in order to get the children relaxed
enough to be able to concentrate for a half hour or an hour in order
to be able to learn something.
And without these people, it would have been completely,
completely impossible for me to get into this area at all. So I
would very humbly suggest that the best persons to train as teachers
are actually the mothers of persons who have autism, because they
already know the subject instinctively quite well. Even if some
of the more academic type of information is missing, but they
understand basically what the problem is, I think.
And so, yes, there are not very many people even in India who can
train trainers, but there are some. And I hope that we can work
something out such that such training can become a regular feature
in some way.
But ultimately as I think Joyojeet was happening yet local
capacity building is really the key because interventions are
required over years and decades so this has to be a local activity.
We'd be very, very happy to do what we can to take this forward.
>> ANDREA SAKS:
Thank you. I'm going to say one more question because we are
going get close to time. So, please, have your question and then
I'm going to close questions for now, and go on to the next speaker.
Go ahead.
>> PARTICIPANT:
Good morning everybody. I am Guisse Ojenedou, Secretary-General
of the union for disabled women in Mali. I have a question of
understanding. I want to know if children with epilepsy are part of
mentally ill people. I want to understand the status of children
with epilepsy. Are they considered as mentally ill children?
>> ARUN MEHTA:
I'm really not an expert in this area but this is a mental
challenge. We don't like to say mental illness. Persons with
autism certainly do not consider themselves to be ill. They see the
problem has being in society more than in them and that is
definitely the case. Very often, persons with autism will also have
other such problems, like epilepsy or seizures of some kinds. But
the definition of who is a disabled person is a very important
discussion. In India too we've been finding for some time to get
autism recognized as a disability under the persons with
disabilities act.
The government is resisting that, even though the government has
ratified the U.N. Convention. So I'm sure that this problem is also
to be found in many, many other countries, that the government does
not even think of doing something for persons with mental
challenges. So it requires us to put in a lot more effort.
And, ma'am, I might also add a little bit, the problems of women
with mental challenges are the most severe -- I have worked in human
rights for about 30 years now. I have never come across any human
rights problem which is more severe than the problems of women with
mental challenges. There was a study done in some states in India
where they found that 100% are beaten regularly. More than 25% have
been raped, and so on. I mean, these are such horrendous
statistics. And I am very delighted that you are looking at the
problems of women with disabilities, and if you have some
information to share on the problems of women with mental
challenges, I would be very, very glad to have some information from
you. Thank you.
[ Applause ]
>> ANDREA SAKS:
Thank you, Professor. With your permission, I'm going to close
the questions for now. It doesn't mean we can't have them later.
And we're going to go on to the next speaker.
And I have let Professor carry on because it was so interesting
and I think the audience really appreciated what you had to say. So
you're going to speak your other presentation in the next session,
and Fernando, the rest of the time is totally for you. Fernando
Botelho comes from Brazil. I've worked with him for I guess almost
two years on the dynamic coalition. He's one of my experts on the
challenges that blind people have, and he is the Director of Product
Development for the literacy bridge in Brazil. And he's going to
discuss the importance of internet governance forum for scalable
low-cost internet access for persons with disabilities. So this
ties into the dynamic coalition which is part of the IGF. Please.
>> FERNANDO BOTELHO:
Hello. Okay. Bonjour. I apologize for not speaking French yet
but the time shall come when I'll communicate in that language.
I want to thank Alexandra, Andrea, everybody at ITU, and
especially the government of Mali for this wonderful opportunity.
I'm going to be speaking about the IGF and how important it is for
us to be able to achieve low-cost internet access, and low-cost
devices for people with disabilities in general, but I understand
that we throw around the abbreviations. Let us start by talking a
little bit about what is the IGF.
The World Summit on information society which is the United
Nations initiative to discuss priorities in the information field
decided that they needed a forum, a multi-stakeholder forum. In
other words, a place where you can bring business, government, the
civil society, experts, to discuss the main issues that are
important in terms of policy, public policy, regarding the internet.
And that's why they created the internet governance forum which has
met already 3 times or so, and meets yearly.
This became necessary because the internet although it started as
a place where academics early, early, early it was only the military
but eventually it was the academic world exchanged information and
software, it evolved into something that everyone in society started
using. And then you have a very diverse set of groups in society,
you have a very diverse set of needs and priorities and values.
Persons with disabilities are certainly one of those groups.
Now, it's important to know that although the internet governance
forum is interested in all the major issues ranging from privacy to
security to stability to even environmental impact, persons with
disabilities are interested in all those issues, they are all
important to us because we're a very diverse group, but we're also
interested in disability-specific issues, like accessibility.
So the whole point of the IGF is the fact that you're able to
address, to look at these issues in a holistic manner. In other
words, you're not looking at them just from a technical point of
view or just from a social point of view or legal or environmental
or language diversity issues. You're looking at all of these
together because in reality, there are no problems that have single
factors determining them. Usually you have a combination of issues:
Economic issues causing an increase in other problems, or lack of -high costs causing something else. Now, I want to use this
opportunity to share what I think would be my interpretation. Just
Fernando's interpretation of what is one of the big problems that we
can address through the IGF. Other people have other
interpretations but this helps us illustrate how powerful it is when
you have the chance to bring the business world, the government
sector, and civil society organizations into the same room to talk
about how to resolve issues.
I'd like to think of the issue of accessibility for people who
are blind, for people who are deaf, people with all kinds of other
disabilities, I think of the accessibility issue as a pyramid and I
imagine it as a pyramid where at the top you have assistive
technologies. In other words, you have the software that reads
what's on the screen for you, the screen-readers, or the software
that magnifies the screen, and that's at the top.
In the middle of the pyramid that I'm thinking about, the
accessibility pyramid, if you will, we have the application you're
using. You have the word processor, the spread sheets, the
navigation software for the internet and so forth, the email
software. Those are the applications we interact with using our
assistive technology. And at the base of this pyramid usually when
you think of software you have at the top the user, the middle the
application and the bottom the operating system. When I think of
accessibility, I have the user with its assistive technologies at
the top, I have the applications in the middle and the base for it
all are what I call the fundamental standards for accessibility and
what I mean by that is that at the base of the needs of those that
need accessibility are communication protocols, are file standards,
are interfaces. Why is it? Why do I have this model? Let's think
about communication protocols, and maybe we should define some of
these terms, right? What I realized in the last couple of days here
is that we have people with tremendous experience in the disability
field. We have others with enormous experience in the
telecommunications field, and we have people with both sets of
expertise. But it's nice to define terms so that nobody's left out.
Communication protocols are just a set of rules. In other words,
if you want your computer to understand the email that my computer
is sending to you, they all have to use the same communication
protocol. They have to understand the first item being sent is the
address. The second is the subject line, the third is the message.
It's simply an agreement on the protocol, on the sequence, on the
way that information is sent.
Communication protocols are important for every aspect of
communication, from telephones to email, internet-based telephony,
everything.
Now, our example is the contrast between how email became
available to all of us, and how instant messaging became available
to all of us. There was a very interesting difference. When email
became available to us, there were no blind individuals bringing
legal cases to any company complaining that email was inaccessible.
However, when instant messaging became popular, there was in the
United States, for example, in the late 1990s, there was an
organization of blind individuals that were suing in court a company
because their emails -- their instant messaging software was not
accessible to the blind.
Let me draw a parentheses here and give context about society and
I'll just make some generalizations here and then we'll come back to
the email versus instant messaging.
Let's say something that is a little obvious about corporations,
about governments, about civil society organizations. None of these
are perfect, right? They all have limitations in different areas.
They all have pressures that are -- that they have to face. Private
corporations, they have huge competitive pressures. They have to
deliver results quickly to their investors. They do not usually
understand the needs of small minorities, like people with
disabilities or even other minorities. They have to focus on the
most profitable segments of the market first. That's a survival
need.
Governments, governments don't always understand what's happening
with small minorities either. They have lots of pressures. They
are relatively slow to react to technological innovation.
Technology changes so fast and governments sometimes they are
Democratic. Other times they're just slow because they are very
large bureaucratic institutions. They are naturally slower than
companies to react to technological innovation. That's a big
challenge. They also have to reach a balance. Governments cannot
just tell companies to do everything in a certain way, because they
have to let them innovate. They have to understand the technology
before they start designing rules, and to do that you have to first
let the technology develop. So it's a balancing act that is very
difficult to achieve.
Civil societies, our NGOs, our associations, they have very
challenging funding challenges, difficulties, we all know that
unfortunately. And we don't always have the resources to study and
to understand the emerging challenges that technology brings us.
Technology does bring us enormous opportunities, but it brings us
enormous challenges with them.
So on the other hand, of course, you have the strengths of each
sector. You have the private sector with tremendous efficiency to
deliver goods, to deliver services. You have the public sector, the
government with an amazing capacity to have large-scale impact. No
other segment of society can have as large an impact as the
government.
You have civil society bringing a sensitivity and the awareness
of the values we hold so important. That is absolutely essential if
we are to have a society that respects human rights, that respects
the needs of minorities such as people with disabilities. So each
of these sectors has a very important role to play in anything that
we the desire to do in large scale.
So let's go back to the case study, the email versus IM case
study. There was no major change between the behavior of government
or behavior of the civil sector or private companies between the
introduction of email and the introduction of instant messaging. So
the fact that one of them was totally inaccessible and the other one
with was accessible is not due to some major movement in any of
these three sectors. It's quite the contrary. It should have been
the other way around.
Slowly we have observed that society is a little more every year
it's a little more sensitive to the needs of persons with
disabilities. So if anything we should have had a reverse
situation. We should have had email as being inaccessible and
instant messaging as being more recent as being completely
accessible to persons who are blind. However, that was not the
case. Why was there this difference? The answer is open standards.
What is meant by open standards?
In this case I'm talking about telecommunications or
communication protocols. An open standard is an agreement that I
have with you where I tell you, I will send you a letter, and every
letter I send you will have my address at the top, the date, your
address, and then my message, my letter. And then when you receive
it on your computer or however we may want to communicate, you know
exactly what to expect. And that's an open standard because you
know what to expect where, and we developed these standards
together. We discussed what's important, what should be the
priority, what should be included? How many details do we need? Do
we need my birth date in this letter in every letter I send you?
No, I need the address, that's essential. The date is important,
the message itself is important. That's an open standard. A
standard everyone can understand, can access and can use so if you
want to use a standard that we discussed to develop a software that
meets that standard, you're able to.
Now, that seems like an obvious thing, right? All standards
should be open but it's not so and we'll explore some of that and
the reasons why some standards are not open and so forth. That was
the major difference between email and instant messaging. When
email became popular, because email is based on open standards, I
did not have to use a software from a specific company or a specific
government agency or a specific NGO to use email. I could choose
any software from a number of very different software companies or
organizations, and even software developed by volunteers, and use
any of those.
And what happened is that blind people avoided softwares that
were developed without accessibility in mind. They could choose.
In other words, there was competition between different solution
providers.
With instant messaging, with this company that became very
powerful in the sector, it was not so, because the communication
protocol for their instant messaging was not open. In other words,
if you wanted to use instant messaging, you had to use their
software, and you had to use their network to communicate with your
friends.
You could not just go ask a friend who is a programmer or ask an
association or organization to hire a programmer and do a little
modification on the software or create a new software and then be
able to access instant messaging. You had to depend completely on
the wisdom or the lack of wisdom of that unique company.
Now, I think this gives you an idea where the problem lies. Once
you have organizations that completely control the communication
protocol, you need them to be absolutely perfect. You need them to
understand the needs of the blind, the needs of the deaf, the needs
of people with physical disabilities. You need them to be
absolutely perfect. But as we have seen, governments are not
perfect, companies are not perfect, and NGOs are not perfect. Any
strategy that requires all of them to understand perfectly the needs
people with disabilities is going to fail. Why? Because it has
failed so far.
We have hundreds of years of experience showing that
institutions, human institutions, they fail. So we have to have
strategies that includes the best in each area, the large-scale
impact that government can achieve, the efficiency and innovation
that the private sector can bring forward to society, and the
morality and sensitivity that the third sector also known as the
civil society, our organizations and so forth, can bring to society.
And the answer to that is open standards, because it allows
competition, it allows dialogue, it allows diversity, it allows
choice. Open-file standards, it's in many ways the same plot in a
different movie.
In other words, if you have a file that finishes with dot doc
from Microsoft Word or you have one with PDF from adobe or you have
one that has txt at the end, each one of those files shows
information in a different way, just like the communication
protocols, except these are file standards.
If those file standards are agreed by everyone, you do not depend
on a single entity, a single organization, to do everything
perfectly. You have choice. So file standards, and then the third
sector, interfaces, which I'll explain a little more soon, they're
just like communication protocols. They allow people choice in the
way they access the information. In one case you're accessing and
interacting with messages. In the other case you're accessing and
editing a file on your computer. And in the other case, the case of
the interface, you're able to use a software such as screen reading
software or magnification software or a Skid software such as
Professor Arun showed us, you're able to use those softwares to
interact with applications on a desktop on a computer.
But this requires a little extra explanation. It was fairly easy
to understand communication protocols and easy to understand file
standards. But interface is slightly different in the sense that we
should first understand why is it important? It's very obvious that
communication protocols and file standards are essential for people
to be able to exchange files. Interoperability is what people
usually talk about, and they're essential for us to communicate with
one another even though we may have different computers, different
operating systems. We might be using even different software.
With interfaces, it's slightly different but is the same
principle. When you have an operating system such as Microsoft
Windows or such as Ubuntu Linux or Mac, MacIntosh OS, the assistive
technology we're using as persons with disabilities it doesn't
matter if this technology is magnifying the screen or reading the
screen or allowing me to control everything with one finger.
[ Linux ]
These special softwares they need to have what some programmers
call as hooks. These are something that they're not -- these are
programming features that are not visible to the end user, but for
the programmer, these hooks allow the programmer to cause, for
example, a software to be activated, or a window to close, or, you
know, something to be magnified.
And so these hooks, they allow the programmer to design an
interface, or design a software, that works well with that
interface. And every company should know what these behaviors are.
This is not so different from the hardware realm, right? We've
been talking about software purely. But in the hardware world, we
have a similar situation. When you design the telephone and the
government is going to allow this telephone to be used in your
country, you need to know that that telephone will be able to be
connected. The connections on the telephone must be standardized,
the type of cable it uses, the voltage it uses, the protocol it's
using to dial a number has to work well with the system already
installed in that country.
And for persons with disabilities, these standards are even more
important. Andrea already talked about this in her presentation,
you have to have an agreement on the standards.
Now, I was talking about interfaces. Well, the buttons on the
telephone, that's an interface. It's not software-based, but it's
wonderful for me to know as a blind person that the numbers start
with 1, 2, 3 at the top and they go in groups of 3 downwards. In
most telephones, this is the standard. It's not required by law.
It's just something that industry in many countries have done.
When I go to a hotel and the telephone is laid out differently,
well, you can imagine. So essential.
Now, you probably realize that none of these are easy questions.
I mean, it's simple in the sense that there's a logic to it. But
it's not easy, because you have the needs and the interests and the
talents and the limitations of three major sectors of society, and
there are other sectors, as well. I'm just focusing on these three
because we have -- we don't have many days to talk together here.
But before I finalize that section, I want to bring back the main
topic that we were talking about earlier. The whole idea here is
what's important in all of this, for us to have low-cost internet
access for persons with disabilities. And why is this important?
Why do we care about low cost, right? Well, the answer is certainly
obvious to you it's obvious to me, but let's elaborate a little bit
more.
There are two or three statistics that I keep in my mind
constantly. In the U.S., some people estimate that 70%, some people
estimate that 2/3, it varies a little, of persons with disabilities
cannot want to work and cannot find a job. This is the United
States of America, these statistics. There's similar statistics for
Switzerland. These are some of the wealthiest nations on earth.
And they have a very serious problem with work.
And then we look at our countries. I come from Brazil. Here in
Africa, it's not radically different. It's more difficult in many
countries, certainly, but it as enormous as in many other
continents.
99% of women with disabilities are illiterate. Now, this is an
overwhelming statistic. This is the kind of stuff that we use to
focus our mind. I do not even try to look at a project that I don't
think can be scaled up. It's important for us to have pilot
projects, it's important to have demonstration projects, but it's
just as important for us to look at the reality out there, and if
we're talking about the technology or a solution that cannot be
scaled up, in other words, a technology that cannot be used
realistically speak, financially speaking, socially speaking, by
millions of people with disabilities, then it's not a solution.
Another statistic that I use to focus my mind is 90% of children
who are blind or visually impaired in developing countries, 90% of
them have no access to any education. So how are we going to deal
with that?
The first conclusion is that our current strategies are failing
and they have been failing for many decades. Our let's think of
innovation. Let's think of creative solutions.
The typical model is our countries, and I include Brazil in this,
our countries look at things that are being done in wealthy
economies, in wealthy societies and they say wow, this is amazing,
this is fantastic. Let's copy this. It doesn't work that way, as
you all know, because the solutions used in wealthy societies are
quite expensive, and they are not, again, scalable.
So we bring a few donations, we help 10 or 20 kids in a small NGO
and they learn to use technologies that they cannot afford, that
their families cannot afford, that the potential employers in the
future cannot afford. So this is creating dependency on a solution
that does not solve the problem. It's immediate satisfaction that
we get, but in the long term, the child is dependent on something
that he will not have access to. As soon as he has to install that
same software or bring that same hardware to another location, he
needs a donation or he needs a lot of money which he does not have.
So let's avoid creating new dependencies and look for solutions like
what we saw with Professor Arun, and what we are going to see this
afternoon, I believe, with other examples, here in Africa, solutions
that are creative and innovative and use technologies and
methodologies that are accessible to us from a financial point of
view, and in terms of our reality, our social realities.
And the low-cost situation that I was talking about is greatly
impacted by what I talked about, the base of the accessibility
pyramid which is -- or the base it should have, which are open
communication protocols, open-file standards, and open standards to
access interfaces, because once you have that, you have consumer
choice. People can choose what email software or screen reader or
whatever they want to use.
Once they are able to choose, you have competition, and once you
have competition, guess what? Prices go down and service improves.
Now, where does the IGF come in? So we get here out of
Fernando's interpretation, with we can come back to a more generic
explanation of the IGF. As you can understand, it's extremely -some of this is not that difficult, but for example, what is an open
standard? We talked about it very briefly, something that everybody
can agree on, everybody, or all the people that have interests and
expertise, can build together and create together, that's an open
standard. Or at least one that anybody can implement without having
to pay a lot of money to have the right to use that standard. And
those are the kind of issues that define an open standard.
But you need to define an open standard. You need to understand
what's an open standard when you're negotiating and making decisions
about the technology solution you need. You need to decide if
you're a government official, you need to decide when will you
regulate a new technology. You need to give companies an
opportunity to innovate, create new things, and not try to put too
many rules when it's very early in the innovation cycle.
However, when it becomes a technology that everybody in society
needs, or a large percentage of society needs, it becomes important
to make sure that people with disabilities and other groups are not
blocked from using this technology because such innovations become
important for our education, for our professional development, for
our entertainment. We focus a lot on work and study, but it's just
as important to have access to cultural -- to the cultural
environments that our society has.
And these are not easy issues. When to regulate a technology,
how? Which technologies to regulate? If it should be regulated at
all. I mean, my suggestion here is if you're the base of the
pyramid, if the protocols and file standards and interfaces are open
to everyone, you don't need to regulate anything at the top of the
pyramid, because there will always be a foundation or an NGO or a
company or a government that is wise enough or even an individual
programmer that is interested in the needs of persons with
disabilities, and if they have access to the protocols or the file
standards or the interface standards, they are able to do it on
their own and they're able to help our community.
So government does not need to regulate every single detail of a
new technology, tell them, okay, you should capitalize the letters
of here. You should make the colors on this screen of your
interface should have a higher contrast. You should allow people to
control this through a single button. None of that. It would be
crazy to try to do that, and it would slow down innovation, which is
something essential for economic growth and for the opportunities we
all need, because technology for others, for many years, was a
luxury. Now it's becoming more essential.
For us, persons with disabilities, technology is essential, and I
don't think everybody understands that. You should be patient when
you talk with something without a disability and you try to explain
to them how important accessing information is for you because they
don't understand that suddenly, if you have a screen reader that
depends completely upon the internet to work and the internet goes
down, well, some people will not be able to check email but you're
not going to be able to use your computer at all.
So these are things that are incredibly important for us, and
people don't always have that in mind. They're not used to
depending so much on technology as we do, so the strategic choices
we make are going to be so much more important for us than for the
general public. So we have to be very smart about the way we
educate others about the choices, the strategic choices, they make,
because it will affect us, our education, our jobs, our
opportunities to have jobs in a much bigger way.
Now, just to finalize the IGF, I mentioned it's a forum for
stakeholders from different sectors to can come together and talk
about all these issues. What to regulate, when to regulate, if to
regulate, what's important, what are the values that are important
to us. How industry can be encouraged and let loose to innovate and
create new things, and then be taught, be instructed on what's
important. So if we are ever to have enough scale, enough volume,
low enough prices to reach this huge group of people we're talking
about, 99% of women with disabilities in developing countries, 90%
of children who are blind or visually impaired who need an education
and we can talk about so many more statistics, it's endless the
amount of statistics that show us our challenge, if we're ever going
to be able to reach these large numbers of people, we will need
solutions that are large-scale. We will need solutions that can be
replicated by people in different circumstances that can be played
around with, that people can modify, re-create, adapt to local
needs. We will need solutions that are created by bringing together
the private sector, the government sector, and civil societies and
that's why we need the IGF. Thank you.
[ Applause ]
>> ANDREA SAKS:
Thank you, Fernando. We're running over time a little bit, but I
hope you'll indulge me for one more moment, and we're not going to
have questions this session. I'm going to move some of the
questions and answers to the next session, where I'm going to, as I
said, move Professor Arun Mehta.
So if you'll bear with me, I do have a special guest that Oumar
is going to introduce and then we have an announcement and then
coffee so we'll be coming back at quarter past. So please.
>> OUMAR SIDI SANGHO:
Thank you, ladies and gentlemen. Your attention, please. During
the -- at the beginning of the session, the Honorable Minister
mentioned some important action conducted and the difference of the
rights of all people with disabilities, and to illustrate this
reality in Mali that the rights of people with disabilities despite
all the challenges Mali faces, these rights have been defended by
very high personalities and today with we have the honor to
introduce to you one of the first men who fought to establish and
lead an institute for the promotion of blind people in our country.
He has also been a man who has been very close to policymakers in
Mali to influence them and to have them make important decisions in
favor of disabled people. He is blind but this handicap didn't
prevent him to become one of the great actors of the social
development in our country. I will not mention all the functions he
has occupied and all the rewards he has been granted in Mali and
across the world.
I would like to ask you to welcome the Minister who is in this
room and it is with great emotion that we introduce him each time
because he's a monument in our country. He deserves to have a
statue built somewhere in Bamako. I would like him to say a few
words, to greet this audience, this Honorable audience. So bring
him a microphone, please. Once again we applaud him.
>> ISMAËL KONATÉ: This is too much honor for me. So -- open the
microphone, please. It's important for us that you say ->> It's important for us that you say a few words.
>> ISMAËL KONATÉ: Thank you. I think that this is too much
honor granted to me. I would like to allow myself on behalf of all
the people with disabilities in the African Continent to thank
sincerely the ITU and all the organizers for this very wonderful
initiative. I can certainly speak on behalf of all my brothers in
Africa because I am not only emeritus President of the association
of people with disabilities but I am also President founder of the
union of blind people in Africa and in addition, I am a good will
Ambassador for the African institute of readaptation of the
African -- of people with disabilities. In this capacity I've
traveled around the world. I went to Brazil, India. And I
participated for four years in the implementation of the
international convention for the rights of people with disabilities.
Thank you for coming, thank you very much. Have a nice day.
Thank you very much.
>> ANDREA SAKS:
Thank you very much and we are very glad to have you with us.
Thank you very much.
I have one announcement before we close for coffee, and I'm going
to turn the microphone over to Alexandra Gaspari. Just a moment,
please.
>> ALEXANDRA GASPARI:
We are honored to have a personality and for technical -- we have
been granted a forum -- form you are invited to fill that we will
take back to Switzerland and thus we will keep in contact with you.
Please fill out the form, the hostesses are delivering them to you.
After that, you hand it back to them. This is for us to have a
detailed enumeration of your contact information, your telephone
number, email address and address. Thank you and enjoy your coffee.
>> ANDREA SAKS:
Thank you very much. And we'll expect you back in half an hour,
which will be quarter past 11:00. Thank you, ladies and gentlemen.
[ End of session ]
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verbatim record of the proceedings.
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