Children With Illnesses and Disabilities Find the Internet Good Medicine for Isolation

REDMOND, Wash., Aug. 9, 1999 — For three years after he was diagnosed with leukemia as a high-school freshman, Darren Dale’s daily routine fluctuated between normal life and severe illness. In and out of chemotherapy treatments every six or eight months, Dale always managed to stay in touch with friends and keep up with the outside world — even when he was too ill to be a part of it. But after a bone marrow transplant in 1997, the real world became a distant, irrelevant place. For two months after the operation, everyone who walked into Dale’s
“bubble room”
at the hospital had to be gloved and masked, and his additional five months of recovery at home were spent indoors with his mother and grandmother. The sense of isolation was intense, and would have been unbearable, said Dale, had it not been for the Internet.

Dale had used a computer for a long time before his illness, and during his recovery he found that activities such as building his own home page on the Web, playing games online and being a part of various mailing lists were a great distraction. Then one day he discovered an Internet activity that would become much more than a brief reprieve from isolation.

While participating in a chat session online, Dale learned that a children’s theatre company in California wanted to produce an original musical about the daily lives of children with illnesses and disabilities. They needed teens like Dale to collaborate online and provide inspiration for the play. Darren had always had an interest in theatre, and he decided to get involved. Today, Dale says that participating in the creation of the San Jose Children’s Musical Theatre production of PULSE: The Rhythm of Life changed his life forever.

For a year and a half, Dale and approximately 100 other teenagers with illnesses and disabilities such as cystic fibrosis, cancer and cerebral palsy, brainstormed online several times each week with Kevin Hauge, artistic director of SJCMT. What characters should be in the play? What disabilities would they have? What was the plot going to be? In essence, the kids were charged with creating lives from scratch — their lives.

“The collaboration was something that we all looked forward to tremendously,”
Dale said.
“It gave most of us, who at the time didn’t have much else to live for, a real purpose. And it brought together a lot of people who were able to understand what no one else could. That sort of community simply wouldn’t have happened without the Internet.”

Internet access makes a tremendous difference in the lives of children with illnesses and disabilities. It gives them a way to reach out beyond the walls of their isolated environments — whether they are hospital rooms, homes or just small towns — and share the many feelings and fears that accompany their illnesses and disabilities with others in similar situations. It also affords them opportunities to be more independent. They can do research, find resources, and take advantage of e-commerce without having to leave home. And the Internet also exposes kids to a whole new world of possibilities. Teenagers with disabilities, for instance, can find mentors among successful adults with disabilities — people that they never realized were out there — and learn by example how they can set their career goals much higher than they had anticipated.

Microsoft has long recognized the critical importance of Internet access for children with illnesses and disabilities and has been working to raise awareness of the issue and increase the quantity and quality of technology training initiatives that are available to these young people. The company recently made donations to several organizations that promote technology use for children with illnesses and disabilities. These include the San Jose Children’s Musical Theatre (SJCMT) and DO-IT, a University of Washington project that uses technology to help children with disabilities reach their academic and career goals.

Scope of Microsoft Initiative Goes Beyond Product Development

Much of Microsoft’s effort to recognize organizations that deliver technology access and training initiatives for people will disabilities comes from the Accessibility and Disabilities Group (ADG). ADG is a division within the company that is dedicated to developing accessible products, technologies and services for those with disabilities.

The main goal of ADG is to create technology that enables operating systems, applications, and adaptive hardware and software products to work together efficiently and evolve gracefully with one another. But equally important is the group’s commitment to build strong relationships with the disability community so that Microsoft can better understand and respond to customer needs.

“While we put a lot of effort into making the PC more accessible, it doesn’t address what magical things are done with the information technology that is available today,”
said Greg Lowney, director of the Accessibility and Disabilities Group at Microsoft.
“Using the PC to connect kids with illnesses and disabilities is one of the most compelling and innovative uses of existing technology and the Internet.”

Part of the emphasis on building relationships with disabilities groups comes from Microsoft Chairman and CEO Bill Gates, who in February last year announced a plan to significantly increase the size and scope of the company’s accessibility initiatives. One of the outcomes of this commitment is that ADG has grown from a staff of one in 1998 to more than 40 dedicated professionals today. Another key outcome is the addition of the Accessibility Advisory Council, which comprises representatives from advocacy groups, user groups, and research organizations in the disability community. The council meets periodically to assess Microsoft’s product accessibility efforts and help establish accessibility priorities.

Microsoft Underwrites Original Cast Recording of SJCMT Production

The creation of PULSE — a musical about kids with severe illnesses and disabilities who find their voices and each other on the Internet — began on Convomania, a Web site for children created by Apple Computer in 1996. As part of a pilot project for the site, Apple set up computers in 10 hospitals across the country, and provided training so that children could get up and running on the Web. Soon kids from other hospitals and recovery houses began visiting the site, playing computer games and connecting with one another.

PULSE lived in an area within the Convomania site called TADA! (Theatre as Digital Activity), which was created by SJCMT in an effort to explore the different applications that theatre arts can have using technology. TADA! offered kids, most of whom were teenagers, the opportunity to play theatre-related computer games or participate in daily chat sessions. After funding for Convomania ended in 1997, SJCMT moved TADA! to the theatre’s own Web site and continued the PULSE project.

From 1997 until the production was staged in 1998, a group of about 100 participants from all over the United States brainstormed, created, debated and argued online over the content of PULSE. And as the children got more involved in the characters and plots they were trying to create, they also became more involved with each other.

“We became very close,”
Dale said.
“Two of the people in our group died while we were collaborating, and it was very hard. But it also brought us closer together. And often our involvement with the play brought desperately needed light to a situation that is often not very light in itself.”

In May 1998, PULSE: The Rhythm of Life was performed live onstage at the Montgomery Theater in San Jose. Public performances were sold out and the production met with great critical acclaim.

“We recognized very early that this model we created — the kind that allows kids from anywhere in the country to contribute to the development of our musical productions, tell the stories of their lives, and then ultimately have their story told on stage, is a winning concept for kids,”
said Michael Mulcahy, executive director of SJCMT.
“It brings a human element to the Internet, and makes it a more friendly place.”

Later in the summer of 1998, Mulcahy began searching for someone to underwrite the original cast recording of the play. The Accessibility and Disability Group at Microsoft was impressed with the concept of the PULSE production — it was the first time a musical had been written using the Internet. Microsoft awarded the theatre company a $50,000 grant to record, package and distribute a CD of the original soundtrack.

Last June, San Jose PBS affiliate KTEH-54 released a 90-minute documentary, narrated by Annette Bening, on the making of PULSE. It will go to national PBS stations for airing in December.

DO-IT Sets the Sky as the Limit for Kids With Disabilities

The University of Washington’s DO-IT program takes a different approach to using technology as an empowering tool for kids with disabilities. Like SMCMT, DO-IT focuses on using the Internet to lessen the isolation that kids with disabilities, especially teenagers, experience. But the group’s main focus is to elevate the academic and career expectations the children have of themselves by building online, as well as real-world, communities of peers and mentors who can help motivate kids to achieve.

DO-IT, which stands for Disabilities, Opportunities, Internetworking and Technology, was founded in 1992 and has been funded primarily by the National Science Foundation, the State of Washington and the U.S. Department of Education. Through a variety of programs, DO-IT staff work with high-school students who are interested in the sciences, mathematics and technology, to help them transition to college and eventually to careers. Two of the main programs the project produces — DO-IT Campers and DO-IT Scholars — comprise live-in summer studies and camp programs that bring teenagers with disabilities together for several weeks at a time, and then maintains those communities via chats and special programs on the Internet throughout the rest of the year.

“When kids become a part of these online communities, they realize they’re not the only ones facing these kinds of challenges,”
said Sheryl Burgstahler, director of DO-IT.
“The combination of camps in the summer followed by online communication throughout the year helps the children build really strong relationships with one another. And peer and mentor support is a wonderful motivator.”

Microsoft’s Community Affairs group recently awarded DO-IT a $30,000 grant to build on its already successful DO-IT Campers program. As part of this program, DO-IT coordinates Internet activities at selected summer camps across the country run by organizations such as the Easter Seal Society, the Muscular Dystrophy Foundation and the Northwest Burn Foundation. The add-on program teaches kids how to use computers and the Internet, and helps them start thinking about college.

The grant from Microsoft will support the establishment next summer of the DO-IT Camper program at two Easter Seal camps in states where DO-IT has not previously been involved. Then the following year, DO-IT will return to the same two camps and do a similar program, with the idea that DO-IT activities by then will become an institutionalized part of those camps’ summer programs.

Another program hosted by DO-IT, called DO-IT Scholars, brings 20 high-school students with disabilities to a live-in summer study program at the University of Washington. The purpose of the program is to help participants explore their interests in science, engineering, mathematics or technology, and prepare them for college.

Before the students come to the study program in the summer, DO-IT supplies each teenager with a personal computer and Internet access in their home, as well as the training they need to use the technology. By the time they arrive, they’ve already had the chance to get to know other participants via online communication from home. Then when they return home they have the opportunity to correspond throughout the year, communicate with adult mentors with disabilities, and participate in special projects online. The following year the same students return to the University of Washington for a one-week summer study session. By this time, Burgstahler said, they’ve managed to solidify their relationships with their peers and mentors, and they are ready to go on to college.

Many teenagers who started the Scholar program as early as 1993, when it first became available, are still active on the Internet with others that they met in DO-IT, according to Burgstahler. Some have even graduated from college and continue to stay in touch, mentoring younger participants.

“Having access to other people like myself with disabilities has helped me see that it’s possible to succeed in careers and in life,”
said Amanda Johnson, a DO-IT Scholar who is a wheelchair user. Johnson, who plans to pursue a career in journalist, will be attending the University of Great Falls in Great Falls, Mont., beginning in September.

A Vehicle to Spur Confidence

Internet access is a priceless resource for communicating online, doing research and taking advantage of e-commerce, providing children with severe illnesses and disabilities the opportunity to stay in touch with the world. But the bigger payoff of this technology, by far, is the confidence these children gain by being a part of online communities that offer them the opportunity to take risks and expand their horizons while getting support from others who share and understand the challenges they’re facing.

For Dale, collaborating on the PULSE project and becoming close friends with others in the group changed his life by showing him a world of new possibilities and helping him gain the confidence to explore them.
“We were all so close that we had nothing to fear,”
Dale said.
“I really learned to open up and be myself.”

Dale, who is now a sophomore psychology major at Western State College in Gunnison, Colo., will soon enter a pre-med program. He plans to pursue a career in pediatric oncology.
“We go where our experience dictates,”
Dale said.

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