For Some, The Net is a Lifeline

By Howard Rheingold

"The net can be an essentially barrier-free place for someone accustomed to encountering one obstacle after another in the regular world."

"For my son Blaine, who uses a wheelchair, the Internet is a very real and important way to connect with the world. It is probably his most complete and equal connection, a means to giving him real power in the universe.

The net can be an essentially barrier-free place for someone accustomed to encountering one obstacle after another in the regular world," Marie Deatherage recently e-mailed me. We've been corresponding. I believe that knowing a little about Marie and Blaine might help us all make more intelligent decisions about the Internet.

Censors in Congress paint cyberspace as a hall of horrors that threatens to destroy our youth, and frame hideously unconstitutional censorship laws based on scare stories. Technology critics dismiss the idea that computer-mediated communications might be a lifeline to some. Unfortunately, this is the only side of the Internet story that most of the world ever gets through the mass media.

But Blaine doesn't use the Net to find cyberporn. He uses it to make human contact.

Consider the people who can't participate in the kind of social life most people consider normal, because of disability or illness or age, but who find not just resources, but friends online. Meet Blaine Deatherage-Newsom. Fifteen years old, when I first met him online. I get a couple of e-mail requests from high-school or college students every week. Blaine's message stood out from the rest:

"Hello, I hope you can help me. My name is Blaine and I am doing a project for my biology class. If we had the technology to eliminate disabilities from the population, would that be a good public policy to do so? What are the Pros? What are the Cons? Why do you feel the way you do?

"I should tell you that I have spina bifida and hydrocephalus so I have my own feelings and answers to these questions, but I want to know yours."

I repliedvia e-mail and remarked on what a serious and articulate person he seemed to be. A few weeks later, I received his report. Blaine received more than ninety replies from all over the world. He quoted them in his report, revealing a wide spectrum of opinion. And I learned a bit more about Blaine's motives in asking the question:

"I went to Oregon Museum of Science and Industry several years ago and saw an exhibit that described a child born with spina bifida and hydrocephalus. Visitors to the exhibit were asked to vote on whether the child should live or die. I voted that the child should live, but when I voted, the child was losing by quite a few votes. When these things happen, I get worried. I wonder if people are saying that they think the world would be a better place without me."

So he used the Net to do the survey.

"The Internet opens the world to me and to a lot of other people too."

The response to his project had a profound effect on Blaine:

"It made me feel like I have friends, or at least people who care about me, all over the country, and even the world. Just think how amazing it is that a boy who is fifteen and in a wheelchair because he is paralyzed from the armpits down got to ask a question that ninety people from all over the world took the time to answer. The answers were so interesting and diverse and gave me things to think about that I would never have thought of before. The Internet opens the world to me and to a lot of other people too."

Sending e-mail surveys is not Blaine's only use of the Net. Far from it. He and his mother have made a deep and systematic exploration of a world to them that represents freedom and knowledge and friendship.

Next , you'll meet Blaine's equally remarkable mom, Marie, and learn about their research into Net resources for the disabled.Marie suggests the Disability Solutions Page that is beginning to develop a resource that "features bulletin boards, information souces, links, and a multi-user dimension that enables participants to simultaneously converse and collaborate on disability issues."

"Blaine has played chess on the net with people who still have no idea he is sixteen, the size of a ten year old, in a wheelchair, and unconsciously rolls his head ,"

Marie Deatherage, mother of Blaine Deatherage-Newsom, recently wrote me. Blaine and his mother tell their stories most eloquently themselves. For those who think cyberspace is a scary place, Marie has something important to say.

"The first time we logged on was a revelation. We went right to the Usenet newsgroups. Blaine chose a chess group and started reading posts. Someone had asked a completely obscure chess trivia question. Blaine knew the answer and made it his first Usenet entry. The most wonderful part of this interchange was Blaine's ability to fully and equally participate in an activity in a way that his disability was not a handicap. If it had been verbal communication, the other people would have had a very difficult time understanding Blaine's speech. If they had met face to face, people might have taken one look at Blaine, and through prejudice, decided that someone in Blaine's circumstance would have nothing to contribute. But on the net, Blaine was judged strictly by the content of his contribution. I could see that he felt so powerful, so competent."

"I remember tears forming in my eyes while watching this. So often I have watched him left out, overlooked, or looked on as an aberration. We both felt a strong sense of community among the group. Blaine and the others shared questions and answers and intrests, and they looked to one another as experts, as resources, as having something to contribute. Maybe most people feel they are viewed this way in their everyday world. Blaine usually does NOT get viewed this way unless people somehow get to know him well. People who don't know him so often judge him on the basis of what they see, and never even get as far as looking at the content of his contributions."

Marie has something to say to other mothers who might be frightened by all the scare stories about cyberspace in the media:

"I just don't agree that the Internet is a scary place. While I find some of the content objectionable and even repulsive, even that has provided opportunities for learning life lessons. We discussed what this material might tell us about the people who were doing it. I remember when we found a hate group and read through the postings. We were both shocked, and I'm not sure Blaine had ever imagined that anyone would believe or say some of those things. I think he's better off knowing that they exist. Do I wish the world didn't have any bigots and hatemongers? Of course. But given that these people exist, do I want my child to grow up without knowing they are among us? I don't think so."

There are hundreds, thousands of stories like Marie's and Blaine's. I believe that for every person for whom the Internet turns out to be a truly scary place, there are ten for whom it is a lifeline.

Marie spend considerable time exploring Web-based resources for developmental disability. Here are some of her recommendations: "The University of Wisconsin's Trace Research and Development Center( is a leading center on creating cyberspace accessibility. University of Alberta's Developmental Disabilities Center is another. I found other useful resources listed at Sun's Enabling Technologies site and at Equal Access to Software and Information "

Next time you hear one of those scare stories, remember that for Blaine and others, cyberspace represents a form of freedom they cannot find so easily in any other place.