Living with Eyegaze - COGAIN 2006 - Angela virtually in Turin

Angela JansenBerlin

http://open-forum.de/events/ANGELA-Turin.htm

The 2nd COGAIN Annual Conference onCommunication by Gaze Interaction

COGAIN 2006Gazing into the Future

4-5 September 2006Turin, Italy

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.

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.

Whom I met first 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 the 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:

textALS 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 tongue. 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.

Angela and Artist Friend

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.

textWhen 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

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.

textI 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

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

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.

Playing with Elsa

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

Car-Park-Rock`n-Roll

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

Disco Fox

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.

Meals

Cake

Telephone

Farah: You could not travel to Turin because of severe organizational problems but you travelled to Paris when the theatre piece 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.

Waiting for the train

Angela in Berlin at the train-station

Angela in Berlin at the train-station

Paris we are coming

Getting aboard the train

Really Leaving Berlin

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

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.

In the Train

Theater Art & Vegetable Paris

Playing with Elsa Schlingensief

CLIP 5 - Eiffeltower

Eiffeltower

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

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!

writing the book

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. Thomas Meyer.

Let us try the impossible.

Further links:Charite Berlin http://als-charite.deChristoph Schlingensief http://www.schlingensief-als.deImmendorff Stiftung http://www.immendorff-stipendium.de

This is the Berlin Team

Eric & Heiner & Julia & George

TCConference

System

Mum & Sister&

Daughter &Aunt

Anne & Hasiday & night care

Kai Son IT- technician

Farah & Angela „on air“

BjoernFilm-maker

HeinerFacilitation

Davidtranslations

Thoenicke ProductionsWDR Film 2006

Positive News & IHTEC & Talking Communities

Wolfram

Schlosser Kommunikationstechnologie

Sanny

Photos

Gunter

Open - Forum

involved in the production of our short presentation

EMERGENCIES

TU-BERLIN