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By: Jack A. Nelson
Brigham Young University
In recent years sociologists have pointed out the diminishing sense of community in modern America. (Ruben, Josephson) Amid all the other social problems of violence, drugs, poverty and homelessness, public corruption and mushrooming national debt, there is a pervasive sense of growing isolation. The problem is even more serious for those with serious disabilities. More than any other segment of American society, they feel an isolation like no other. Often bitter and alone, usually lonely and feeling bereft, many simmer with a sense that they have been dealt from the bottom of the deck when destinies were handed out. A supportive family can help, of course, and often a sparkling personality can shine through even the direst of circumstances to attract friends and a circle of acquaintances. But for many, each day is a lonely and fruitless vigil, dulled perhaps by television, and waiting for something that never comes--a cure, a friend, a laugh.
For them, their community may be pitifully small, almost non-existent. Indeed, the great worm that eats at the heart of those with severe disabilities is a sense of "isolation," a feeling of being cut off from the good world that everyone else enjoys. Those lucky enough to have close family and friends who show love and care are often able to avoid or sublimate those feelings of isolation. However, this sense of being different, of being left out of the vast river of society is a part of most disabilities.
Although their situation is worse than most others, the disabled are not the only ones affected. Ray Oldenburg proposes that in our changing modern times we have sacrificed one of the key environments in our lives. The three essential places in our lives, he says in his book "The Great Good Place" are: the place where we live, the place where we work, and the place where we join for conviviality. it is the idle talk and banter with acquaintances and friends in these third places that bond a sense of community. It is these, he says, the town squares and barber shops and pubs and corner cafes--places that have been replaced in recent years by shopping malls, fast-food joints, and banks with drive-thru windows--that offer the requisite places of conviviality to make our lives satisfying.
It is this "place of conviviality" that is often missing from the lives of the seriously disabled. Yet the development of the "information highway" that has so caught the nation's attention in recent years offers a realistic opportunity through the networks that link computer users together and allows the creation of a virtual community. These many networks--usually called the Net--can be the place of conviviality and belonging that Oldenburg talks about.
"One of the most-discussed trends at the end of this century is the collapse of the community, the number of people who don't have colleagues who share their interests and values," writes one observer. "The Net is a natural answer."(Wright, 27)
Sometimes called cyberspace, the virtual community occurs in the linked networks that have come to extend like a spiderweb over the globe. Originating with the military and developed by the U.S. government, these networks have taken on a life of their own as people have made them a place to exchange words, human relationships, data, wealth and power.
One major observer of the phenomenon, Howard Rheingold, says: "People in virtual communities use words on screens to exchange pleasantries and argue, engage in intellectual discourse, conduct commerce, exchange knowledge, share emotional support, make plans, brainstorm, gossip, feud, fall in love, find friends and lose them, play games, flirt, create a little high art and a lot of idle talk. People in virtual communities do just about everything people do in real life, but we leave our bodies behind. You can't kiss anybody and nobody can punch you in the nose, but a lot can happen within those boundaries. To the millions who have been drawn into it, the richness and vitality of computer-linked cultures is attractive, even addictive." (Rheingold, Virtual Community, 3)
The key is that all that is needed to participate is a computer, a modem, and access to a network via telephone. Thus for about the cost of a new television the doorway to a new community may be opened. The momentum is growing for more and more people to become "citizens of cyberspace," as the New York Times puts it. (March 8, 1994. A-1) ". . . they are forging relationships that many describe as rewarding as their face-to-face friendships." The Times estimates that there are about 35 million users of cyberspace, although nobody knows for sure. The Internet alone has 15 million to 20 million individual addresses.
The Users Of Cyberspace: The key for the disabled, of course, is that the limitations of normal society do not exist in the virtual community. Perhaps a New Yorker cartoon is pertinent here: A canine computer hacker says, "On the Internet, no one knows you're a dog." By the same token, on the Internet no one knows you're a quadriplegic, or have palsy, or are unable to speak, or are terrified to interact with others face to face. What they do know is what thoughts you care to put on the screen, what you reveal about your politics or religion or life-long goals, or ideas about any issue being discussed on the Net. That is the personna by which you are judged. That is the user in the virtual community, who makes his or her place according to what he or she cares to send across the electronic doorway into that community.
The fact remains that for anyone--aggressive, handsome, domineering or timid, unpleasant to look at, and unsure of himself or herself, maybe even unable to speak--that for any of these who choose to join an electronic society where the levelling influence of the network makes everyone equal, the virtual community awaits. As one user explains, "These groups become--for hours at a time--their whole world, liberating yet confining. But hey, it beats silitary confinement, a common condition these days, and one the ESPN, the Home Shopping Network and Court TV don't really alleviate.(Wright, 27)
On most of the larger networks people form all sorts of groups based on common needs and common interests. There are forums for trout fishermen, cancer patients, for people with AIDS and for those who have the HIV virus but have not yet developed AIDS.
As useful as communication with other people with similar disabilities might be, however, the real promise of the virtual community is that anyone may interact with others on the Net regardless of their physical condition. What is happening then, is NOT an electronic connection of those with disabilities--although some of the networks offer that connection for those who desire a linking of those with similar problems to share those problems and ideas about living better. More important probably is the potential for joining the electronic community where any disability is unobvious and irrelevant, where one is valued for what he or she "thinks" and "communicates."
An example of the closeness of such communities: Brendan P. Kehoe is well-known on the Internet with its global web. On December 31, 1993 he was severely injured in an auto accident and lay in a coma with a brain injury. Within hours word of his accident spread and messages poured in from network friends around the world. As he worked to recover his speech in the following March, he realized a different dimension of cyberspace as he wrote:
"I knew I had a dozen really close friends, but oh, it just really amazes me. It occurs to me now that even though they're just E-mail addresses on screen, there are real people behind them. It's really neat, especially when you realize that the people who are into it aren't just computer weenies." (Lewis)
And as in face-to-face society, there can be rudeness and putdowns, aided by a sense of anonymity in some programs. Some programs have what is called a "Bozo filter" that can automatically eliminate from a user's messages any from a sender who in the past has proven himself particularly obnoxious.
The Benefits Of The Community:
In general, we may say that there are three general ways in which those with disabilities can benefit tremendously by becoming part of some electronic community--whether it be Usenet, Compuserve, America On Line, or others that are similar.
These areas are:
1. Communicating with other disabled persons or those with an interest in disability to share ideas and information. On Usenet, for instance, there is a Misc.handicap news group. Often these are simply sharing views about various aspects of disability--complaining about bureacracy, etc. But much of the exchange is asking for ideas about how to do things, particularly about technical equipment.
For instance, in the Disability conference that is a subtopic on the Well, one member wrote in 1990: "The is a woman working in the office where I work. She uses a mouth-stick to access a terminal, files paper, correspondence, etc. She started using a Mac SE30 a couple months ago. She has a touch screen that is not working as well as it could. (It's hard to do precise work, like hit a close box) We are thinking about switching to the UnMouse. Any ideas, experience? Can you hook a turbo mouse trackball in tandem with the Unmouse?"(Anthony Tusler, Nov. 21, 1990)
Perhaps more important than the technical assistance, however, is the emotional support many find on the Net. Fred Willard, a former journalist from Atlanta, described the isolation he felt when he became bedridden from arthritis two years ago:
"I had a sense that depression was going to be a predictable result of the isolation . . . As a result, I used my computer and modem to find out about the experiences and survival techniques of other people with chronic illnesses and disability. . . . I would say that some of the most valuable information I gained on emotional survival came through computer networking. The doctors seemed mainly interested in treating the disease and not the patient."(E-mail, email@example.com, May 19, 1994)
2. In the new electronic world we are moving into it is more and more possible to find employment that one does at home--even from bed--on a computer.
For the blind, a new world has been opened by computers that offer both voice processor that reads the messages in a computer voice, or translates them into Braille. Writes Paul Kurtz: "Much of what is happening is great. We blind people can overcome our greatest barrier of information input. . . . My job keeps me hopping as a computer systems manager."
A more poignant example comes from in San Francisco where a user on the WELL network explains: "I live in an iron lung. I get out of it maybe twice a month, but I use the WELL every day. . . I've made a couple of friends on it, but contact is sporadic. . . . It's good for keeping in touch with my editors at Whole Earth. . . I've been writing for Whole Earth, off and on, for 12 years, mostly about disability stuff."(e-mail, Mar. 23, 30, 1994)
Such a use, putting those with disabilities into situations where they can contribute to the workplace and to their own incomes and self-esteem, is a major plus of the electronic community. In a world where the workplace is more and more becoming the home of the worker connected only by computer to the office, this is increasingly more feasible.
3. However, perhaps the most important aspect of those with disabilities joining into the virtual community is simply that for the first time in their lives many find themselves being able to belong SOMEWHERE, a place where they fit in. This is not the disabled community, but merging into the general virtual community. Here they are accepted, here they are judged by the words that they send on screen that they want to share with other readers out there. Others may come to know them by an alias or their real name. But in this community they can be swept along in the turn of daily events that are portrayed on screen, much like as in any other community.
Take, for example, a Washington 16-year-old coping with muscular dystrophy: "I am able to overcome some of my limitations by traveling through `cyberspace' via a modem connected to the world. Currently I use America Online network system."(Chad Ward, "Get Connected--Cool, Sure!" Usenet, May 17, 1994) Uncomfortable in going out in public, he resents the public's stares. "I feel like an alien," he says. "But when I journey through cyberspace, I am able to connect to people and make friends simply by typing on mykeyboard and moving my mouse. . . . I can talk to friends, city wide, nation wide, world wide, all over the place! I don't have to face stares or feel inadequate. And the people I meet and talk to don't have to feel embarrassed. They talk with the `REAL ME.' . . . I love this system!"
Ward explains that one of his cyber-pals from Whittier , Calif. gave him flashes on the big earthquake of 1993 before it was on the news. "Never before had I felt so connected, so much on topy of my world! I have the opportunity to explore the world--all on my own time, and at home. . . . I make new friends all the time, and I forget about the limited use in my wrists and hands."
Over all, the benefits of finding the Third Place--one's own place in the sun in a community where you are valued--seems to far outweigh all other benefits. If the richness and quality of life can be greatly enhanced simply by logging into the Net, that is a quantum leap for those with serious disabilities. It is perhaps significant that one Net user signs off with the epigram, "I post, therefore I am."(Wright)
An important aspect of this virtual community is that if the member wants only to observe, to listen in on the arguments and discussions that come over the screen without joining in, that's all right too. They are still part of the scene. It still touches their lives.
It may be that the most important aspect of electronic networking is its ability to reach the grass roots of population by bypassing the traditional media. Usenet--one part of internet--is a mass medium because any piece of information put onto the Net has a potential worldwide reach of millions. It differs from other media, however, in that most mass media are controlled by a few who decide what information shall go out to the readers/viewers/listeners. With the electronic highway as exemplified by Usenet, every user of the service is also potentially a publisher.
"Usenet is a place for conversation or publication, like a giant coffeehouse with a thousand rooms; it is also a worldwide digital version of the Speaker's Corner of London's Hyde Park, an unedited collection of letters to the editor, a floating flea market, a huge vanity publisher, and a coalition of every odd special interest group in the world.(Rheingold, 130). Yet there are some who note the dark side of virtual communities.
As Paul Kurtz warns: "With the bulk of information, it's awfully easy to escape. The Net must be used by disabled people as a springboard to deal with people, not as a screen or escape. This would apply especially to not barrierizing yourself from those in your local environment."(E-mail: firstname.lastname@example.org, May 25, 1994)
What About Virtual Reality?
The Net, of course, is in operation at this moment and is changing the way much of the world thinks. However, if we look a step beyond--perhaps several steps--we can consider the worlds created by Virtual Reality. Now in a relatively crude form, these computer-generated worlds promise tremendous impact on the lives of the severely disabled in the future.
The theory is that Virtual Reality is that humans do not directly experience reality. rather, they receive external stimuli which the brain interprets as reality. A computer can send programmed stimuli that the brain can interprest as indistinguishable from actual experience. Currently this requires equipment that is very expensive--data helmets that envelop the user with sight and sound and data gloves or suits which allow the computer to track the user's hand or body movements.
As Virtual Technology develops it promises to open up employment possibilities that are beyond the reach of those with disabilities now. The power of virtual reality as it might apply to those with disabilities is shown by the description of John Perry Barlow of how the system affected him:
"Suddenly I don't have a body anymore. At least I know where I left it. It's in a room in a building in a town in California. But I--or "I"-- am in cyberspace., a universe churned up from computer code, then fed into my eyes by a set of goggles through whose twin videoscreens I see this new world. all that remains of my corporeal self is a glowing, golden hand floating before me like Macbeth's dagger. I point my finger and drift down its length to the bookshelf on the office wall." (Marcus, 75.)
The Future Of Virtual Communities:
The future appears bright for those with disabilities in virtual communities. Yet the great impediment remains of bringing expensive equipment into the lives of those who often live on limited incomes. The "Highways of the Mind" that Vice President Al Gore envisioned should not be limited to those with means.
In summary, the virtual community offers a great deal for nearly everyone--but especially for those who are limited in their participation in society. For those such as the man in the iron lung in San Francisco, that journey into that community can be the most rewarding part of a day and can help add to the quality of life.
In any event, cyberspace is where anyone can "meet" people, with the choice open whether or not to follow up to become a community with them.
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