Angela berlin-turin-docu-cogain-2006

Angela Jansen, Virtual Keynote - bridging Berlin and Turin
http://www.cogain.org/cogain2006/cogain2006-videos/cogain2006-day2-Jansen.html Powerpoints

Living with Eyegaze - COGAIN
2006 - Angela virtually in Turin
Angela Jansen
Berlin
http://open-forum.de/events/ANGELA-Turin.htm

This is the Berlin Team
Eric & Heiner &
Julia & George
TC
Conference
System
Mum &
Sister&
Daughter &
Aunt
Anne
& Hasi
day &
night care
Kai
Son
IT-
technician
Farah & Angela
„on air“
Bjoern
Film-maker
Heiner
Facilitation
David
translations
Thoenicke
Productions
WDR Film 2006
Zur Anzeigewirdder QuickTime™
Dekompressor „TIFF (Unkomprimiert)“
benötigt.
Positive News & IHTEC & Talking Communities
Wolfram
TU-Berlin
Schlosser
Kommunikationstechnologie
Sanny
Photos
Gunter
Open - Forum
involved in the production of our short presentation
EMERGENCIES

Introduction
LIVING WITH EYEGAZE
Good morning ladies and gentlemen!
I‘m Angela Jansen. I’ve got ALS.
I’m so proud to finally meet you all,
even if it’s virtual.
Such a distance-spanning participation is a
unique opportunity for me, a chance to
present how I live and what I do.
I had hoped to be with you personally but
the circumstances did not permit.
Many thanks for inviting me.

Playing with Elsa Schlingensief

Let us try the impossible.For Angela Jansen the question is not ‘How do I
die with ALS?’
but ‘How do I live with ALS?’
‘And this is a completely new approach’
says her doctor, Dr. Meyer.
Let us try the impossible.
Further links:
http://www.schlingensief-als.de
http://www.immendorff-stipendium.de
http://als-charite.de

Living with Eyegaze
At first I would like to introduce you to some
of my helpers: here you see Farah Lenser.
Over there is Gunter Schlosser and next to
him Heiner Benking.
Then there is Wolfram Roßdeutscher from
the Technical University Berlin.
From time to time you might glance my sister,
aunt and mum, and there might be Anne
hopping through the picture -
she is my magic fairy-nurse.

Living with Eyegaze
I think you all are familiar with the Eyegaze
Communication-systems as most of you are
experts and have worked hard over the last years
to develop such a system. Therefore please do not
expect a speech about how my Eyegaze works.

Living with Eyegaze
I just want to show you what Eyegaze is able to
do for me, what it makes possible, how much life
it gives back to me.
Before I got this Eyegaze I was communicating
with a board showing all letters, numbers, some
syllables and words.

Writing one single page did take by hand 2 hours !
Using Eyegaze is like a gift for me as it gives me
back 4 to 8 hours precious life every day.

How I lived before you can imagine best
by looking at this foto
Living before ALS

text
I had family, two children, was working as a
teacher and later with the British Army Services.
My schedule seldom gave room for a free minute.

Introduction Living with Eyegaze
Still today - you may hardly believe it -
I feel best in the middle of lots of people,
lots of work, lots of appointments, lots of
tasks, goals and duties. This is my schedule
today:

Best person to ask about this is Farah Lenser.
Who I first met in the theatre at the premiere of
the theatre play ‘Art and Vegetables’ by Christoph
Schlingensief. - Am I right Farah?
First Encounter

Farah: This is certainly true! I remember very well
when we met the first time in the Berlin Theatre
‘Volksbuehne’.
Besides all the action and turmoil on stage – we all
could see teh small face of a woman on a video screen.
She was smiling sometimes and gave us a silent point in
all that noise.
On another video screen we saw a keyboard where
single letters were identified and were forming in
another window sentences and messages like:

text
ALS is a chronic disease of the central nervous
system. For 40% of the ill people the symptoms
start in the legs.
For 40% in the arms. For 20% it starts in the
tong. Cramps in the legs could be the first
indicator.
The legs feel as heavy as lead.

Suddenly one drops the frying pan full of hot oil.
Then the illness creeps into the tongue. In the
beginning one tries to hide it by speaking slowly and
avoiding difficult words.
At some point one is no longer intelligible and one
stops speaking.
illness creeps

Angela at ‘Art and Vegetables’

Farah: And only in the end when all the actors were
assembling in front of the audience starting singing:
‘Happy birthday to you, dear Angela!’,
I discovered you were laying in bed in front of the
stage.
Can you remember your feelings in that moment?

text
I could not believe it at all,
I was completely overwhelmed.
Half an hour before the show
I had incredible stage-fright.

Farah: We will present now a little video clip, which
shows when you were entering the stage for the first
time!

CLIP 1 - Theatre lntro
Theatre Intro
Please click at the Hyperlink above so you can see the Video Clips of Angela as produced by Björn
Thönicke for a production of the WDR 2006. Please see more about Björn at the last slide (Team)
where you can also find references to the WDR production and how to obtain the full film:
http://www.wdr.de/tv/menschen-hautnah/video.phtml http://www.wdr.de/tv/podcast/
Special thanks and credits: We are very thankful to Björn and the WDR to make this presentation
possible.

text
When did I accept the illness?
That took a while,
till shortly before my performance at the theater
the Volksbuehne.
Nine years after being diagnosed as having ALS.

Farah: Angela, you had been in bed for years
unable to move, unable to speak - even for breathing
you need artificial help.
In the following scene we see how you leave your
home after years for the first time again.

CLIP 2 - Excursion
Berlin Excursion
possible.

text
I did not leave my house for six years after the
breathing tube was inserted.
As I first went outside again I did not see much.
The sun was blinding and I squinted my eyes
shut. The car had tinted windows.

text
Then I sucked everything in - everything. People,
cars, the surroundings, the weather. Everything.
It was as though I could grasp things with my eyes.
I see with what is in my head,
and renew my "hard drive" - how do you say that?
- Up-date.

Farah: Off stage you are a homemaker and mother
of two children. You are an actress and multifaceted
women. You live in Berlin in your own apartment.
You love animals and have a rabbit and some dogs
around you.

CLIP 3 - Review
Review
possible.

text
I have lost control over moving my body,
but I can still feel.
The soft places of the dog, her breath, are a
connection to life.

Farah: Angela, you have also been a passionate
dancer!

I was a passionate dancer. But one day I had the
feeling as if someone was holding my feet, they were
like lead.
These were the first symptoms of ALS,
which was diagnosed in 1995.
A passionate dancer

First I could not believe it, but with the progression
of the illness I finally could not hear music any more.
Because when I hear it, I immediately begin to dance
in my head.
A passionate dancer

Farah: In your daily life you are organizing all the
things around you: You are even arranging to cook
with the help of an assistant and a camera in the
kitchen.

text
This is very important to me, as I have to read in
e-mails of other handicapped people, again and
again, that they have been deprived from their
basic human right of self-determination.

Kitchen with Video Camera watching

I insist
I insist that the attendant does everything in my
presence. If I were able to move then I would see
all that -
these are my things, it is my life, my home,
and so I want to see it all myself, or with the help
of my cameras.

Farah: You could not travel to Turin because of
severe organizational problems but you travelled to
Paris when the theatre piece of ‘Art and Vegetables’
got a prize and the ensemble were invited to perform
there. Even then you were confronted with a lot of
barriers as a person with ALS, who needs artificial
breathing while travelling, seems to overload travel
agents. But you finally took the night train to Paris.

Angela in Berlin at the train-
station
Angela in Berlin at the train-station

Getting aboard the in Train
Getting aboard the train

text
For the first hour I want to sit on the gangway.
I want to see that we actually leave Berlin.
The whole thing is unbelievable,
I have to hammer it into my brain.

CLIP 4 - Trainstation Paris
Trainstation
possible.

CLIP 5 - Eiffeltower
Eiffeltower
possible.

text
I am in Paris - the Eiffel Tower
I mail many postcards -
I have made it, I will virtually spit down from
the tower.

This can only be the beginning.
I will not permit this to be a one time event.
It is simply unbelievably what this has set in
motion. I have not yet reach my limits.

Farah: Angela, you have told us that now you are
even writing a book!

Angela berlin-turin-docu-cogain-2006

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