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learning.now: at the crossroads of Internet culture & education with host Andy Carvin

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February232007

Amanda’s Story

I’d like to introduce you to Amanda Baggs. She’s a prolific blogger, an avid user of the virtual reality world Second Life, and a popular video blogger on YouTube. She also happens to be severely autistic, and she’ll change the way you think about the role of Web 2.0 in people’s lives.

I was introduced to Amanda a couple of nights ago in a story done by Dr. Sanjay Gupta on CNN. Gupta described Amanda as a “low-functioning autistic” who is unable to speak or even make eye contact with you when you meet her. From the outside, she seems very disabled and incommunicative. But all of that changes when you hand her a computer keyboard.

Amanda can type 120 words a minute, and she puts her skills to use on her blog, Ballastexistenz. If you’re expecting someone who writes in the style of Rainman, let me give you a taste of her writing style, as she explains the name of her blog:

The reason that I have chosen one of the offensive terms used in the German eugenics movement against disabled people — which, for reference, predated Nazism, was heavily influenced by American ideas, and survived after World War II — is to force people to look at the sentiments that drove that movement, that came before it, and that are still prevalent worldwide today.

Ballastexistenz means about what it looks like: Ballast-existence, ballast-life. Some of the other terms that were applied to disabled people at the same time included leeren Menschenhülsen (empty human-shaped shells/husks), and lebensunwertes Leben (lives unworthy of life).

In using these terms, I do not for one moment forget the gravity of them. The ideas that gave rise to that terms have existed a long time and continue to exist. These ideas threaten the lives and well-being of disabled people everywhere. Autistic people are frequently described in these hateful ways, as empty shells without souls, burdens on our families and society, contributing nothing, ballast that merely weighs everyone else down.

Her blog is a lens into the world of autism that most of us have never experienced. And she takes it to the next level by posting videos about her life on YouTube. Because she’s unable to speak, she communicates through a voice synthesizer, typing the words and letting the computer talk for her. Her YouTube videos have a Steven Hawking-like quality; she even talks about this in one of her videos, noting how the synthesizer lacks inflections and emotion.

The CNN story featured clips from one of her most popular videos, called “In My Language.” I’d like you to watch it - all of it. It’s eight minutes long, but it’s important to see the whole thing. The first half of the video features clips of her going through repetitive tasks, many of which seem to make no sense. She also hums in a haunting fashion. In the second half of the video, she turns on her voice synthesizer and offers a play-by-play of what she is doing and why, explaining how English is her “second language,” and this is way she naturally communicates. Unfortunately, without the keyboard and synthesizer, no one else in the world can understand what she’s saying.

I wanted to share it to get all of you thinking in the way it’s gotten me thinking. Many students struggle with communication, whether because they’re shy or they have Asperger’s Syndrome or some other condition that makes talking or writing a challenge. Amanda has managed to use her blog and YouTube as a way of creating a dialogue with the rest of the world, and she can interact in virtual reality environments as fluently as any gamer. How many other Amandas are there out there, and what role do we have as educators to encourage them to use these tools and reach out to them? -andy

Filed under : People

Responses

Amanda’s video was so eye-opening for me. My niece is autistic. It has been very difficult to understand and know how to help. There are so many confusing voices concerning autism out there. Amanda’s video certainly provides more understanding to those of us who watch and want to help the ones we love.

I find this one of the most compelling reasons to support advances in educational technology. Technology has given Amanda a voice and a chance at a life. I have a very disabled sister who is completely cut off from the world except for through technology. I am glad that there are other virtual worlds that she can enter and find friendship in.

Dear Andy,
Thank you very much for sharing this and creating this blog. I saw the CNN story by Dr. Sanjay Gipta and was deeply moved. I am a career/life counselor who deals with people’s callings and facilitates their searches for meaning and purpose. Amanda is an excellent communicator, more so in some ways, compared with many of us because her native language allows her to be in a constant conversation (two-way) with every aspect of her environment. As she poingnantly describes, ” Far from being purposeless, the way that I move is an ongoing response to what is around me. Ironically, the way that I move when responding to everything around me is described as ‘being in a world of my own’. ” Perhaps it is often WE who are in a world of OUR own, not only in how we deal with the Amanda’s of the world but so much else!

Most of us do NOT choose to be in contact with other aspects of our environments, e.g. Amanada’s interaction with the water in the video. She states, ” I am just interacting with the water as the water interacts with me.” Most of don’t bother to interact with our environment or people that way, a way that demonstrates Amanda’s communion, appreciation, even at some level, respect for her environment. These are all a prelude to having real empathy, a behavior and state of heart and mind we could all use more of with each other!

Most of us don’t slow down and reflect. We move at stressful speeds through our busy schedules daily, having barely enough time for saying, “I love you” or “how are you doing lately?” to the people close to us, let alone strangers not within our immediate sphere of influence. We take much for granted, especially in our Blessed USA where we enjoy so many freedoms and such high standards of living compared with people trying to survive in many other parts of our world. Yet woven throughout the strong fabric of even our own America The Beautiful, we have poverty, homelessness, untreated illness, and much neglect.

We are not sufficiently sensitive to our sisters and brothers, all members of our human family. Global poverty and multiple wars are a testimony to this sad state of narrowness of vision that manifests itself in a lack of global perspective most people have in their day-to-day consciousness, people overly distracted by a pop culture that numbs us and permeates an apathy that is unable to sustain us in any purposeful way.

We are also less sensitive to animal life and the beautiful natural environment that nourishes and protects us, critically important to all of us on this planet. We focus on the narrowness of our selfish agendas whether that be with members of our family, local community, nation, or even our international community - our sisters and brothers around the world who really do need those of us with resources to share them more openly, not necessarliy through feeding the world, but rather, demonstrating through right relationships and mentoring, ways of teaching people to help themselves with our technology and creativity; and yes, sometimes that might mean feeding some of these people!

Amanda is a bright light; she used technology to reach out to the masses caught up in our myopic view of our world and taught us something very important- to stop, reflect, and appreciate. Amanda, “In you is the fountain of life, and in your light we see light.” Thank you Amanda, and I love you my sister, Ed

I work as an aide in an elementary school in an emotional and behavior based classroom . there
are two autistic children in there . they are not openly affectionate , but make they it known
they care . not all autistic / asperger persons are so extreme as in this video . we are all persons and need affection , love and human contact . we are all different …why all the criticism to these two groups all of the sudden ?

Autism is indeed mysterious, fascinating and heart-breaking. I have taught autistic students for 35 years. But I also knew Amanda several years ago. She is a fascinating young woman but is surely not autistic. She has mental health problems, speaks perfectly well, is highly intelligent and has apparently found a “place to hide” from the world in her feigned autism. I wish I knew why she is so fearful of the world yet seeks such public attention. It doesn’t help the understanding of autism to have such attention focused on an erroneous self-diagnosis and facade.

I have read a comment on this which concerns me. There is a comment about Amanda being one who is mentally ill. Any person with a loved one with Autism knows that not all Autism is alike. There are different actions and routines individual to each person. Nevertheless, what Amanda is saying is profound, and I believe this is what she is talking about. There are these people out there that do not think in a language other than English. I have witnessed other teachers trying to teach students with Autism to speak in the English language. Instead to trying to meet them halfway, they just take a diagnosis and run with it.
Kudos to Amanda for enlightening us. If only the whole world would pay attention and take it to heart.
I am cheering for her and all the other individuals with Autism labeled non-verbal. They will find their “words” and one day we will all hear….

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