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The 2nd COGAIN Annual Conference on Communication by Gaze Interaction COGAIN 2006 Gazing into the Future 4-5 September 2006 Turin, Italy. Living with Eyegaze - COGAIN 2006 - Angela virtually in Turin. Living with Eyegaze. Angela Jansen Berlin.
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The 2nd COGAIN Annual Conference on Communication by Gaze Interaction COGAIN 2006 Gazing into the Future 4-5 September 2006 Turin, Italy Living with Eyegaze - COGAIN 2006 - Angela virtually in Turin Living with Eyegaze Angela Jansen Berlin http://open-forum.de/events/ANGELA-Turin.htm
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. Introduction
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
Living with Eyegaze • I think you all are familiar with the EyegazeCommunication - 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.
Living before ALS How I lived before you can imagine best by looking at this foto
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.
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: Introduction Living with Eyegaze
First Encounter 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?
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:
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 tongue. Cramps in the legs could be the first indicator. The legs feel as heavy as lead.
illness creeps 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.
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.phtmlhttp://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 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.phtmlhttp://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 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.phtmlhttp://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.
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.
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.
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 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
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.phtmlhttp://www.wdr.de/tv/podcast/ Special thanks and credits: We are very thankful to Björn and the WDR to make this presentation possible.
