Michael E. Holtby, LCSW, BCD
HIV & THE INTERNET
First published in Resolute!, November 1997
This article is inevitably out of date. The price of computers, particularly those that are used or surplus, has made access much more affordable. In addition, many links have been abandoned or changed. I have made no effort to update them in this article, but there are a ton of them here, and it would be worth trying the ones that interest you. I also suggest you start your current search by reading my HIV page, and following the up-to-date links you will find there. Nonetheless, there may be some useful artifacts in this article.
What, you may ask, does the Internet have to do with a column on HIV and your mental health? In fact, quite lot! There is ample research with shows that being empowered by information is a factor in long term survival rates among PWA's. In addition, anything which helps PWA's be less isolated has the same impact. The Internet has the potential to do both of these things if you apply yourself. It can also be an exercise in frustration, and a sense of overwhelm with the maze of options. For example, on the World Wide Web, if you tell a web browser (a database search tool) to bring up everything related to HIV or AIDS you will get literally thousands of "hits". But there are starting points this article will recommend to reduce the level of difficulty of your search.
ON RAMPS TO THE INFORMATION HIGHWAY:
Many readers will feel they are excluded because they haven't yet felt they could afford a computer, printer, modem and all the other hardware to make surfing the web a reality. You can, however, gain access for free! The Denver Public Library has a hundred computers in the main library, and additional pc's in their branches. They do not allow you to use them for chat rooms or e-mail, but you can search web sites. They also have a number of books, and training videos on the Internet available to you with a library card.
If e-mail is what you really want you can get an account at one of the net
cafes around town. The two on Capitol Hill are Majordomo's Cafe at 1401 Ogden,
and Cafe Netherworld at 1278 Pennsylvania. The hourly rate for computer usage
ranges from $4 to $6, and an e-mail account will cost $5/month with a $20 setup
charge. These cafes also offer classes and help setting up your own web page.
Other cafes can be found in the burbs, and I have heard of the Net Cafe on South
The Kinkos on Colorado Boulevard and the store at 17th &
Welton both offer Internet access at twenty cents a minute ($12/hr). They also
offer free e-mail accounts (so you would only pay for the time it took to
retrieve and send your messages).
A more expensive alternative is to buy a used computer. Most people think in
the three to five thousand dollar range, but it is possible these days to buy a
used computer which would do the job for less than a thousand. The basics you
would need are: a Macintosh or Windows-compatible computer (386 or higher) with
at least 8 megabytes or RAM, and 40 megabytes of unused hard drive space. You
will also need a modem that hooks into your phone. Its speed should be at least
28.2 kilobytes per second, or it will try your patience.
An alternative for between three and four hundred dollars is Web TV, produced
by Sony and Panasonic which is a box that hooks into your television. The
advantage of this alternative is the low price, and its social value in that
several viewers can enjoy it at the same time. The disadvantage is that it is
not hooked up to a printer, and you can't download files.
In short, your excuses about the Internet being only for rich kids, and so
not available to you, are falling by the wayside.
USING A SERVER:
Once you have the hardware, you need to get online. This takes a server which is the software that runs your modem, and offers you local phone numbers which allow you to "log on". The granddaddy of them all is America Online (AOL) which boasts 9 million subscribers. It has certain advantages due to its size, and some disadvantages. One advantage for PWA's is its HIV chat rooms, which my clients tell me, can be lively and an entre to meeting people. AOL is also user friendly, easy to install and learn your way around. Sign-up discs with free trial offers are often sent in the mail. If you don't already have one which came with your computer or in the mail, they are in many computer magazines.
The downside to AOL is they allow junk mail (called "spam") to clog your
e-mail, ie. 1200 ADULT ENTERTAINMENT SITES, and MAKE MONEY ON THE WEB! Its kind
of a pain to go through and delete them all, and in my haste I have sometimes
deleted a message from a friend. Servers like Earthlink have a zero tolerance
for spam. Another disadvantage is AOL is growing so fast it can sometimes not
keep up with the demand, and you get a busy signal when you dial up. PC
World Magazine reviewed 3,800 of its readers in February and they gave AOL
a "D" in customer satisfaction.
There are a number of alternative servers and some are listed in the box accompanying this article. They all tend to run around twenty dollars a month for unlimited usage. I have a more limited account with AOL for five hours a month which costs me $5.95. AOL has what it calls "flash sessions" which allows me to go on line, download my e-mail, and go off line in a matter of a few minutes. Besides the national servers I have listed here, you can also pick up a complementary magazine like Peak Computing or Colorado Computer User and find a number of local servers. You can find these magazines at Tattered Cover, Racines, or Annies Cafe.
NATIONAL INTERNET SERVERSAmerica Online 800-827-6364
AT&T WorldNet 800-967-5363
E-MAIL & MAILING LISTS
Electronic mail or "e-mail" is the main stay of most people's use of the Internet. It is a way to connect with people all over the world for only the cost of the server's monthly fee. Most e-mail is short (a few paragraphs), and arrives at its destination within hours of your sending it.
E-mail has helped me keep in touch with my daughter in Seattle, compose a
conference presentation with a colleague at the University of Arkansas, and work
on a book chapter with another in Manhattan. I have gotten to know people in
South Wales, Germany and South Africa. I have made some good friends through
e-mail which has lead to trips to Baltimore and England this summer.
The most extraverted of my clients, who is now on disability due to HIV and
fatigue, spends a good part of his day staying in touch with various friends,
both those he has known and many he has met through writing to others who are
HIV+. How does he find them? Besides mailing lists and newsgroups, which will be
described later; he has used the AOL membership directory. Over 250 AOL members
identify themselves as positive, either in their profile or with on-line names
such as: HIVandOKAY, Poz n LA, SouthernPoz, and Pozietta. My client reads their
profile, and if they sound interesting he sends them a note: "I think we have a
few things in common..." Its a pretty assertive approach but works!
Another use of e-mail, and a way to meet others is through mailing
lists. These are groups of people, all of whom get the same e-mail.
Mailing lists center around a specific topic. I belonged to one that was for
mental health professionals who work with HIV. It included a psychiatrist from
Seattle, a social worker from the Castro, and a psychologist from Australia,
along with close to a hundred psych-types.
When you subscribe to a list use the e-mail address described, leave the
"subject" blank (or use a single space if your e-mail software requires the
subject line filled in). In the body of your e-mail write "subscribe", the name
of the list, and your name. Some lists are credentialed, ie. if its a list for
health professionals they will ask you to specify your vitae. Some lists are
only open to those infected with HIV versus affected.
Some mailing lists you might consider joining are:
(subscribe green_acres Your-name)
(subscribe HIVPSYCH your-name)
Another way to find and subscribe to mailing lists is through Mary Howard's
web site: http://www.smartlink.net/~martinjh/maillist.html.
Marty also has a mailing list for PWA's which is described on his site under /chatnews.htm.
I would suggest you subscribe to one at a time until you know what the volume
of mail is going to be on a given list. Some are a few e-mails a week, others
can be dozens a day! An alternative is to set up your own mailing list and send
mail simultaneously back and forth to a dozen friends. You could have your own
international support group which was small, intimate and by invitation only.
NEWSGROUPS & CHAT ROOMS
The more public forums are newsgroups, and chat rooms. Chat rooms are places where a number of people are on-line "live" and can dialogue back and forth. AOL has a number of these rooms and you can access descriptions of them and how to access them by using the Keyword "On Q HIV" (without the quotes). This type of forum can often be superficial and a bit of a free-for-all of chatter. There is, however, one group for PWA's which is facilitated. It is in a "private room" and you have to write to Magg2 or Marty Hwrd (Howard) to gain access. This group has been going for eight years. It starts with a period of "free chat" and then goes "formal". At this point the facilitator calls on people to insure that everyone will get their question or comments aired. I have heard about another active chat room for PWA's through the ChatNet Channel. Their web site is: http://www.geocites.com/WestHollywood/3829.
Newsgroups are not places where you find news items, they are bulletin boards on specific subjects. There are 15,000 such groups on the Internet on every conceivable subject. You might find it interesting to check out such sites as alt.sex.fetish.watersports, but for our purposes I would recommend one of the following:
On these sites you will get dozens of messages a day you can scroll through.
You can pick a subject that interests you and follow "threads" which are
messages on a related topic which are grouped together. You can e-mail the
individual personally who left a message of interest to you, or you can post
your own questions or comments to the newsgroup. One caution: the information on
these groups are variable in their reliability. I found some still preoccupied
with whether HIV is the cause of AIDS.
THE WORLD WIDE WEB
I have been keeping a list of useful HIV related sites on the Web, and the links to those sites are at the end of this article. Please let me know if some don't connect for whatever reason and I'll try to keep them updated. The whole concept of "surfing the web" involves going to one site which has "links" to others. Its a simple mouse click from one site to another. So really you only need a starting place to follow your particular interest. Another way I find relevant web sites is to pay attention to when they are listed in a newsletter or magazine article, ie. Resolute! or Poz, and put it in a file until I can take a look at it.
I believe the Internet is going to become increasingly used by everyone as just another way to get information, whether its on a product we're researching to buy, the weather in a city we are traveling to, or tracking down a long-lost friend. That potential is there now, and for those living with HIV it can be a virtual community of support and a continually up-dated reference library. Happy surfing!
LINKS TO RELATED WEB SITES:
MIKE'S TOP TENUniversity of California at San Francisco AIDS Program:
Marty Howard's HIV/AIDS Homepage:
Aegis: AIDS Education Global Information System
Queer Resource Directory
The Body: AIDS Information & Forum
Yahoo's Search Engine for AIDS
JAMA: Journal of the American Medical Association
Doctor's Guide to AIDS Information and Resources
Michael Shernoff's Articles on HIV/AIDS
National AIDS Treatment Advocacy Project
AIDS Treatment News
AIDS Information Network
AIDS Virtual Library
Immunet: Easy Access to Quality HIV Information
AIDS Weekly News (26,000 article search)
Concordia University Libraries HIV/AIDS resources
Journal of AIDS/HIV
ATIS: AIDS Treatment Information Service
Keep Hope Alive (Alternative Health Options)
Mortality & Morbidity Weekly Report
AIDS Clinical Trails Information Service
National Institute of Allergy & Infectious Diseases: AIDS Division
Centers for Disease Control AIDS Clearinghouse
AIDS Community Outreach Grants
National Institutes of Health HIV/AIDS Information Services
National Library of Medicine HIV/AIDS Resources
Grateful Med: AIDS line, trails & drugs
Critical Path AIDS Project (Philadelphia)
Colorado AIDS Project (Denver)
Gay Men's Health Crisis (New York)
HIV InfoWeb Virtual Library (Boston)
Johns Hopkins AIDS Service (Wash. D.C.)
The Estate Project for Artists with AIDS
AIDS Support Online
Health BBS (Bulletin Board Service)
ANAC: Association of Nurses in AIDS Care
International Assoc. Of Physicians in AIDS Care
Human Rights Campaign
ACT UP (New York)
GENERAL MEDICAL SITES
MEDLINE: National Library of Medicine
MEDLINE Abstracts and Articles
Medical Matrix (annotated health links)
Hardin Meta Directory of Internet Health Svcs.
MENTAL HEALTH SITESShrinkRap Column in its entirety:
Mental Health Net - Self Help Resources
Prevline: National Clearing House for Alcohol & Drug Abuse Information
Pharmaceutical Information Network
Rx List: Reference for 4,000 drugs
U.S. Pharmacopeia Drug Information
SPECIAL HIV POPULATIONS
HIV/AIDS and Adolescents
HIV/AIDS Information for and about Children
Talking to Kids about AIDS
Books for Children about HIV/AIDS
Women and AIDS
Last messed with November 15, 2001
Copyright(c) 2001 Michael E. Holtby, LCSW. All rights reserved.