Linking People to Each Other
“What the heck is that?” you wonder. “It must be serious, or Mom and Dad wouldn’t be so upset. The doctor at the hospital explained some things, but I don’t understand.” Suddenly you remember the phone number that another doctor gave you. She said that it would help you use a computer to meet kids with the same problem — she said you might even be able to get some free computer games.
Now preteens and teens, with and without disabilities, no longer have to struggle through issues alone. They can call up the Ability OnLine Support Network at any time and communicate, free of charge, with a peer or mentor.
The Ability OnLine Support Network, a Canadian charitable organization, provides an electronic mail forum for children and young adults with disabilities. Using a computer and modem, persons of all ages can dial into a central computer where messages can be exchanged with others. There is never any charge to participate.
Large steps forward are continually being made in the telecommunications industry, and the Ability OnLine Support Network is taking advantage of them. But who could have predicted this application? The program is the brainchild of Arlette Lefebvre, staff psychiatrist at Toronto’s Hospital for Sick Children, and Brian Hillis, president of Remote Data Systems in North York.
12-year-old Chris calls up, follows the simple instructions on the screen, and is registered within minutes. The messages that appear on the screen are confusing at first, and Chris is not sure what to do. Suddenly the words How are you? come on the screen.
I am fine, Chris types. There is a message in brackets to press the Enter key, so he does.
How old are you? appears. Chris types, 12. This is easy!
Now the words I am 13 show on the screen. Chris realizes he is typing to another person.
Do you have a disease? Chris is asked. He types, I have leukemia.
The words So do I! appear. You should join conference 47. Lots of kids who have this disease type there.
What do you mean?
Next time you are at the hospital, ask Dr. Froggie to help you out.
I don’t know Dr. Froggie. Who is he?
It’s Dr. Lefebvre. All the kids call her Dr. Froggie.
Chris was participating in a live chat, and this exchange might very well have taken place. There are currently six phone lines at Ability OnLine, and with approximately 1,200 children and young adults and 600 adults using the program, there is always someone on the system.
Kids of the ’90s are not as intimidated by computers as their parents. They encounter computers in school, on television, even at the local video arcade . . . just about everywhere they go. Interacting with a computer is not unfamiliar to them.
Two weeks after his first experience with Ability OnLine, Chris has an appointment with “Dr. Froggie” (Lefebvre uses the nickname as an icebreaker, poking a bit of fun at her French background). At this appointment, Chris explains what happened when he joined the system and asks, “What did he mean by saying I should go to conference 47?”
Dr. Froggie explains that Ability OnLine is divided into different areas of interest, called conferences. Some conferences are available only to people who call in to Ability OnLine. Other conferences are open to anyone who belongs to one of the hundreds of systems around the world that exchange mail with Ability OnLine. Dr. Froggie gives a brief demonstration on the computer in her office, showing Chris how it works. She also gives Chris a disk with a computer program called 1st Reader (paid for by the Max Bell Foundation) that will make everything easier.
Learning about leukemia, chemotherapy and on-line conferences . . . this is a lot for a young mind to grasp!
Chris goes home and joins conference 47. In this conference there are 70 different messages. Using the new program he has been given, all of the messages are gathered up and transferred into Chris’s computer at home, to be read when he has a chance. Among the collection of messages are notes from other children, some of whom have active cancer and are in the hospital, and others who are healthy. There are messages from older people too, some of whom may have a personal involvement with cancer, but not necessarily all of them. Someone may be typing a message for a friend who is too sick to type. Some messages contain information about the latest research in cancer; others include tax advice and employment problems.
This is a very interesting collection — but Chris is still wondering where the games are!
With the program Dr. Froggie has given him, Chris can look all over the place. He comes across some pretty “awesome” conferences. He finds one called “Sibs” and realizes that his brother Frank would really like it. Maybe another kid is having the same sort of fight that Frank always has with him — Frank can find out how that kid handles it. Chris’s father would really like the Blue Jays conference. Some actual team players are members of this one. There’s even a message from Jim Abbott, the one-handed pitcher who used to play for the California Angels and is now with the Yankees. Chris’s parents can call up and join a parents’ conference. They might meet other parents who have a sick kid.
Chris decides to leave a message in the Public Forum conference. Maybe someone can tell him where the games are.
Funding for the Ability OnLine Support Network has been provided by the Max Bell Foundation, the Rotary Club of Toronto Leaside, and the Hospital for Sick Children Foundation, as well as many individual donations. Right now, the number to dial is (416) 650-5411. It is hoped that additional corporate sponsorship will provide the funding necessary to allow the installation of an 800 telephone service so that Ability OnLine can be accessed completely free of charge from anywhere in Canada.
For more information, contact the Ability OnLine Support Network at: 919 Alness St., North York, Ontario, M3J 2J1, or phone (416) 650-6207.
(Gary Sandler is a freelance writer living in Toronto.)
ABOUT THE AUTHOR:
Gary Sandler, an adult with multiple sclerosis, talks to the world through his computer on Ability OnLine. In 1989 he lost a kidney to cancer, but he refuses to quit. Gary uses his mind to invent ways of helping his body to cope, such as a block-and-tackle system to get in and out of bed, a hands-free, voice-activated phone for his wheelchair, and an amplifier for his voice, which was weakened by surgery.
Gary also devotes a great deal of his time to improving the lifestyles of other people with disabilities. He has helped to implement better access to such facilities as Mel Lastman Square in North York, Ontario, and has worked with the Ontario Federation of Cerebral Palsy Parents Association in the redesign and renovation of two group homes that now house 10 previously institutionalized people. Gary is now involved in a project to bring more people with severe disabilities out of institutions.
Gary has completed a video with St. Michael’s Hospital in Toronto about himself and his sophisticated wheelchair, which controls much of his environment: the television, stereo, telephone and VCR, for example.
Recently, Gary took a journal writing course at Ryerson Polytechnic University in Toronto.
Dr. Arlette Lefebvre was awarded a Community Action Award on June 1, 1993 by Elaine Ziemba, Minister of Citizenship with Responsibility for Human Rights, Disability Issues, Seniors’ Issues and Race Relations. The award recognizes her outstanding accomplishments supporting children who have disabilities or chronic illnesses.