Web Posted on: December 8, 1998

USING CYBER COMMUNITIES TO BREAK DOWN DISABILITY WALLS.

Amelia Stephens
Phone 805-543-3892
Email DolphinDarling@yahoo.com

Teresa Middleton
SRI International
Phone 650-859-3382
Email middleto@unix.sri.com

Judi Fusco
SRI International
Phone 650-859-6207
Email jfusco@unix.sri.com

What is a Cyber Community? Do the Cleavers live there? Is it protected by Andy Griffith? Not even close, the cyber community we are talking about is designed for young people facing illness and disability. Another way to think about it is:

"A worldwide family where distance knows no boundaries. It offers the gift of acceptance and friendship to any young person who visits the website. A cyber community can enhance lives by offering love and support, and most of all understanding. It becomes a place where being different is cherished and celebrated in turn rebuilding self esteem at a time when the rest of the world is stealing it away. It offers leadership opportunities for young people who may be unable to participate in another type of program. A place to just be yourself and never ever feel isolated or alone, even when confined to a hospital bed or wheelchair. It is a home where self expression runs free. A cyber community offers education to those who may never have been affected by illness or disability, by allowing a safe place for any young person to talk openly about life." Amelia Stephens, Mission Statement

Those words are a vision of what a cyber community can be to an ill or disabled person, as seen by someone who has spent time helping to build one. The description is based on the experience of living, working, laughing, crying, sharing, and learning, in such a community.

In our presentation we will describe how cyber communities are creating safe environments for young people facing illness and disability to hang out with their friends, share information, ask each other for help and advice, be goofy and have fun, and, if they want, invite guests in to give them information and expertise. The cyber communities we describe include the use of chat, email, websites, and virtual environments.

One of the first electronic communities to focus particularly on youngsters with illnesses was called ConvoMania. ConvoMania was a pilot program designed by Apple Computer in 1996, as a community of youngsters who, though isolated in their hospital rooms or homes could gather to share stories, ideas and make friends with common interests. Apple's design included equipping sites in a number of organizations (e.g., children's hospitals, Ronald McDonald Houses) so youngsters in those locations could create paintings, drawings, poetry, scan in their work, and upload it to the website to be shared by all.

The program brought clear benefits to the children at these sites. Children often spend many months at a Ronald McDonald House as they receive treatment. This can be a very painful, lonely and scary time, even if their parents are able to be with them. Having computers to work on, the ability to gab with friends online, play games, and produce artwork, provided a marked improvement in the quality of the children's lives, and in their attitudes.

Through corporate downsizing, ConvoMania lost its support. Since that time the network of kids and parents has hung together with a new name–ConvoNation–which can be found at www.ConvoNation.org The website is ConvoNation's interface with the outside world. It is an important outreach mechanism that enables people from around the world learn about ConvoNation and relate their own lives and experiences to the people they read about, and whose pictures they see in the website. In our presentation we want to introduce you to the children, teens and young adults who are keeping ConvoNation alive. A place where with scheduled chats each evening, an unofficial "yearbook" of members and an e-mail list serv they help connect young people all over the world with others facing the same day-to-day struggles. On any given day anything from a new music release to a possible success with a new medical treatment or a community members upcoming birthday is discussed. This is just normal information that people pass back and forth electronically all the time, but it becomes a critical lifeline for a population made up of people who are separated by thousands of miles, but are fast friends because of their understandings of each other's battle with illness.

The chat room aspect of a cyber community can also be a wonderful place for education-frequently with the kids as educators. For example, one medical resident sits in on the chat quite frequently because he feels he can learn more about being a good doctor when hearing it from a population that not only has the experience, but can describe it to him in very real terms. The young people also learn from each other. Their peers are natural mentors, and they trust their experiences with similar treatments and setbacks. They know the other child they are talking to has no reason to tell them anything than exactly how it is really going to feel on the inside; whereas they seem to be more skeptical of the information they might get from doctors or parents who have never actually undergone this experience personally. However, to keep a fair balance, doctors and other specialists are brought into the chat room every so often so they can provide researched information in a relaxed environment-a sort of "Ask the Doc" program. Topics can vary from treatment-related topics, however, and many times these professionals are asked about what medical schools they recommend and what they really think about the Spice Girls.

Another, much newer community site, is called Commonthread. It can be found at www.commonthread.org. Commonthread is, at present, the newest community reaching out to ill and disabled young people. It uses not only an art gallery and listserv, but also incorporates a virtual chat environment, using Palace © software.

While we are talking about virtual environments we should also mention a very large virtual environment site at SRI International which could become yet another way to reach to these special young people. SRI staff are working in partnership with nationally-recognized education organizations, preservice, master's degree programs, and state and local education agencies to jointly establish a sustainable on-line professional development community called TAPPED IN. The principal goal is to begin supporting teachers and other education professionals during their pre-service education and continue to serve them as they become leaders in their professional community. While TAPPED IN is designed for use by teachers–who are historically isolated from other adults in their daily routine–we see it as an ideal place for youngsters with illness and disability. The environment provides a place that is more like the real world than a chat room, where people generally feel very comfortable connecting with each other. There are places to be explored, you can build things (virtual sofas, chairs, pets, food, clothing), to use and share with each other, you can leave messages for your friends on whiteboards, create legacies for people who will learn from you, and create remembrances of friends you never want to forget. In addition you can access videos, papers, and books, and of course you can chat with new found friends.

TAPPED IN also represents a very safe place on a number of counts. It is a place where people have to have accounts to enter, so nobody can just wander in. (Youngsters in chat rooms that are designated for people with disabilities have sometimes had problems with others coming in and making insensitive, unkind or unpleasant remarks). So in this way it is something like a private club. The entrance to TAPPED IN is through a web site. People who just come by can sign in as guests, but access to the full club activities requires setting up an account, or "joining the club".

Another reason we consider it a safer place is that there are many ways to create privacy in the environment itself. Whether it is whispering (as is done in a chat room) or designating a particular area (or object, such as a sofa) as a place for private discussion, there are ways for requesting, and receiving, privacy if you want it. With private and federal funding totaling over $1.5M, SRI has developed a platform-independent, Web-based environment designed specifically to meet the needs of large and diverse communities. On any given day, TAPPED IN members can attend activities hosted by partner organizations, conduct their own activities, or expand their circle of colleagues by participating in real- time or bulletin-board discussion groups. SRI and its partners provide the tools, resources, and social support structures needed to supplement face-to-face events and sustain the kinds of interactions that are characteristic of successful collaborative work.

A number of young people have visited TAPPED IN to explore the possibilities of using it as another electronic community for youngsters with illness. They have learned explore the whole environment, use the tools, and find their own particular room that has been specifically created for them. For those who so wish, we believe this environment would be an ideal place for expanding technology skills and becoming so called MOO wizards.

SUMMARY

In this paper we have provided information about electronic cyber communities that exist to support youngsters with illness and disability and the benefits derived from such websites and virtual environments. This is not a comprehensive list, however, we hope we have given you a flavor of the value of these environments for young people who have a critical need for this type of support system.