DeathNET: Educating the world about "choice-in-dying"
by John Hofsess
(From "Last Rights" #14; Winter 1995)
One in four Canadian homes now has at least one computer
according to a Statistics Canada report released in November
1994. This figure marks a doubling of personal computer
ownership over the past six years.*
Even more striking: one in three of these computers is equipped
with a modem (a device that sends and receives data over
telephone lines and which permits access to the Internet - a
vast computer network sometimes referred to as the
"information highway"). In 1993, according to StatsCan,
figures for modem ownership were so low they didn't even
register as statistically significant in that year's survey.
But, according to the 1995 edition of the "Canadian Internet
Handbook" by Jim Carroll and Rick Broadhead, Canada now ranks
fifth in the world in the number of e-mail addresses (1.7
million), most of which utilize a modem in relaying messages.
This dramatic growth in electronic communication is driven by
several recent developments: CD-ROM technology has added a
new dimension to the home computer's usefulness both as an
educational tool and a means of entertainment (anyone who has
entered the intriguing realms of MYST - to name just one of
the best-selling interactive CD-ROM games and one of the great
pop-culture achievements of the 1990s - will know that there
has never been anything quite like it in other forms of mass
entertainment).
CD-ROMs provide a strong incentive to increasing home computer
sales. More home computers in turn leads to an increase in
the number of Internet users. Now we find the two
technologies becoming even more interwined with CD-ROMs being
used on the Internet to provide memory-intensive information:
graphics or entire dictionaries and encyclopedias (before the
end of the year, we expect to have issues of "Last Rights"
complete with colour and graphics, stored on CD-ROM and
available on the Net).
Media hype and hoopla over the Internet also fuels home computer
sales. Sensationalistic stories about the Internet
(pornography! perversion! film at 11!) are played up by the
"establishment" media apparently in the hope that
opportunistic politicians will demand that "something be done"
about this latest threat to public morals.** But anyone who
believes that the Internet can be "domesticated" and regulated
simply doesn't understand the technology involved. The
Internet is the world's first means of mass communication that
is not subject to the constraints of being a formalized branch
of the mass media.
For example: anyone wanting to know the "banned" details of the
infamous Homolka-Teale murder case simply has to conduct a
search through Gopherspace using Veronica; type in "Homolka"
and file after file of "banned-in-Canada" material fills the
screen (why does no Canadian newspaper tell its readers that
simple truth - instead of having its lawyers grandstanding in
the courts over "the public's right to know"?). The greatest
threat posed by the Internet is not to "public morals" but to
media conglomerates which seek to be the sole purveyors of
news. We may well see by the end of 1995 the Internet
providing millions of people with an alternate form of
journalism, unbeholden to commercial interests and free of
censorship.
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Footnotes:
* By way of comparison, 40.8% of households have a compact disc
player. The figures are based on a survey by Statistics
Canada of 38,000 households in May 1994.
** MP Myron Thompson (Reform; Wild Rose, Alta) issued a press
release on November 7, 1994, headed "We Must Stop This Smut"
in which he called upon the CRTC to regulate "Internet
providers" in Canada.
-----
Usage of the Internet is growing fast, especially in Canada.
There was a 48% increase in registered domain names (host
computers) in Canada in the first six months of 1994. The
vast geographical distances and dispersed population of Canada
has traditionally made us a spiritually lonely people. A
sense of desolate isolation and disconnectedness forms the
bedrock of much Canadian art and literature. The Internet may
change the way we feel about ourselves: giving us low-cost
"connectivity" we never had before with dozens or hundreds of
e-pals and professional cybernauts, turning loneliness into
something closer to creative solitude.
In my study of Canadian film, "Inner Views: Ten Canadian
Film-makers" (McGraw Hill-Ryerson, 1975), I wrote:
"All of the inventions which support popular arts - the printing
press, radio, film, sound reproducing equipment, television -
go through a process of first being used as mass media
systems, and then, eventually, minority media systems...
Whenever a medium has passed its peak as a mass medium serving
a large, homogenous audience, it becomes a multiple-minority
medium catering to the specialized interests of many
different, small groups."
I went on to explain to my readers what could (and could not) be
reasonably expected of Canadian cinema at any given period in
its history due to the interplay of economic and technological
forces.
The Internet marks a dramatic break in that historical pattern.
Anyone with a computer and a modem becomes both a user of and
a contributor to the workings of the "Net." It is talent and
imagination - not money - which determine who succeeds or
fails on the Internet ("Success" or "Failure" are relative
terms here since "size of audience" means virturally nothing
in a field where capital investment is so low). You can set
up a bulletin board system (BBS) in your apartment, offering
some specialized information service (ranging from plot
synopses of every "I Love Lucy" episode to you-name-it) and
sooner or later some portion of this wired world will find its
way to your electronic door. Or for even less investment
(perhaps no more than the $20-or-so per month it takes to be a
registered user of a commercial network server) you can set up
an information or entertainment service on Gopher or a World
Wide Web site serving whatever public interest you choose.
Michael Strangelove, one of Canada's more astute analysts of the
Internet, writes in a recent article, The Internet as Catalyst
for a Paradigm Shift:
"The Internet is a distributed and open systems technology.
'Distributed' meaning that it has no central location and
'open' referring to the fact that the operating codes are not
proprietary or secret. Everyone can contribute to the design
and development of the overall system."
He goes on to say: "One of the great historical ironies is that
the Internet arose out of a Dr. Strangelovean plan to create a
communications system that could survive a nuclear holocaust.
What was to have been a communications system for the
surviving elite of a military-industrial complex has mutated
into a subversive neo-democratic (more precisely, anarchistic)
cyberculture. The unique technological character of the
Internet has endowed it with a fundamentally subversive
nature. Over the past twenty five years of its growth, the
Internet has demonstrated that it is not subject to
privatization, centralization or control. This situates it in
direct opposition to the historical dynamics of capitalism and
commercialization. The unique technological architecture of
the Net has generated an equally unique cultural force that
defies present economic relationships."***
*** Reprinted in chapter 22, "How to Advertise on the Internet"
(Strangelove Press, Oct 1994).
On the Internet, all men (and women) are reborn as equals:
Time-Warner or AT&T, for all their millions, are no more
privileged in what they can do on the Internet than a
hard-working amateur with an imaginative grasp of the new
technology. What follows is a guide to what we - a non-profit
group as poor as the proverbial churchmouse - have achieved on
the Internet so far.
We began in April, 1994 with a modest installation as a Special
Interest Group (SIG) on the Victoria FreeNet. This marked the
first of our Last Rights Information Centres in Canada. The
menu-choices were few, the files fairly limited. Basically we
offered background information on the Society and a few short
sample articles from Last Rights.
We then opened the second of our Last Rights Information Centres
on the National Capital FreeNet in August. NCF has a
"showcounts" feature to measure traffic. In the first week of
operations, more than 100 users accessed the Information
Centre (lately the traffic runs about 55 unique "hits" per
week, of which about 15 on average are designated as "guests"
i.e. non-registered users of NCF presumably approaching us for
the first time). Continued traffic depends on keeping a site
current and adding more features of public interest.
The next installation took place on Toronto FreeNet. We were
fully installed by the time TFN became operational in
September. The TFN Last Rights Information Centre (designed
by one of our Online Directors, Duncan McRae) is as advanced
as we can make it given certain limitations of the standard
FreeNet software. It offers an expanded Menu of services
including links to numerous newsgroups. It serves a goodly
number of students who are looking for information on
euthanasia and assisted suicide (rather hot topics in Canadian
schools, judging by the number of requests we get). Students
and researchers from other parts of Canada can telnet into TFN
or NCF from a FreeNet in their area and thus have access to
our information centres free of any charges, including
long-distance telephone charges.
Also in September, we were granted permission by the Senate of
Canada to make available online the complete hearings of the
Senate Special Committee on Euthanasia and Assisted Suicide.
This marked the first time that the Senate had released
information electronically. We are also the only online
source of this material. Since the files are much too large
to store on any freenet, we bought space from a commercial
server (Island Net in Victoria, BC). We then installed the
transcripts on a Gopher (accessible by WWW URL:
http://www/islandnet.com:70/1/members/rights; or Gopher:
gopher.islandnet.com, choose Libraries from the Main Menu,
then choose Last Rights Information Centre). Island Net's
sysop Mark Morley reported that "over 300" people accessed
these files in the first month.
By late '94, it was apparent that another branch of the Internet
- World Wide Web - was where the action was. New York Times
reporter, Peter H. Lewis, wrote in a major feature on the
World Wide Web ("Companies Rush to Set Up Shop in Cyberspace",
Nov 2, 1994): "The main trouble with the Internet has been
that almost everything tends to be hidden behind a uniform
display of raw computer text. By contrast, World Wide Web, a
subset of computers on the Internet, enables users to leap
from one computer data base to another at the click of a
mouse, following ideas, color photographs, interactive
diagrams, sound and video clips - all linked via a technology
known as hypertext." Lewis goes on to estimate that at
present "perhaps two million Internet users" have the proper
software to access the Web in this manner (that is roughly one
in 15 Internet users in the United States).
We began work on our WEBsite called DeathNET early in December.
It had its official launch on January 10, 1995 (URL:
http://www.islandnet.com/~deathnet). Much of the work was
done by an enterprising Camosun College student, Chris Fraser,
majoring in computer science. To further extend the range of
this new service, I asked Derek Humphry (founder of the
National Hemlock Society in the U.S., author of the
international best-seller Final Exit; and currently Executive
Director of ERGO! - the Euthanasia Research and Guidance
Organization in Eugene, Oregon) to join us in setting up an
American-oriented branch of the NET. Thus users are able to
access either the Canadian side of DeathNET or the American
side and be directly connected with a wide variety of medical
and legal information around the world. Within two weeks of
its launch, DeathNET attracted over 1,000 users (an access
counter on Island Net keeps track). To date, over 5,000
people have visited DeathNET, despite the fact that the site
has received no publicity other than being listed in several
Intgernet Directories.
The ERGO! Information Center, the first American installation of
its type, is co-managed by Derek Humphry (email:
dhumphry@efn.org) and by Abby Gleicher (email:
abby@ursula.uoregon.edu). You can browse through the ERGO!
Online Bookstore (which displays the covers of publications
available through ERGO! along with a description of contents
and authors). You can read the latest in news dealing with
euthanasia and assisted suicide from all over the United
States through the ERGO! Online News Service. New features
are being added almost every week.
The Last Rights Information Centre which is installed on
DeathNET is a state-of-the-art creation using the Netscape
Navigator - complete with colour graphics and sound, and
(eventually) short video clips.
At the opening screen (or "home page"), the user chooses between
entering the Information Centre or accessing the official
transcripts (in English and French) of the Senate Special
Committee on Euthanasia and Assisted Suicide. In addition to
the transcripts we are making available online some of the key
briefs by Witnesses - such as those by Eike-Henner Kluge and
Alister Browne, to which we have access. There is also a
background report on each Senator sitting on the Special
Committee.
Upon entering the LR Information Centre on DeathNET, you may
select the Last Rights Online Library and be connected to such
resources as the John Hopkins Medical Library or the World
Health Organization. There you will find the latest
statistics, surveys, research papers and publications dealing
with major illnesses. Or by choosing another of our options,
you may read the full text (in English or French) of the
Supreme Court of Canada decision in the Sue Rodriguez case
(eventually incorporating a video clip of Sue delivering her
famous "Who owns my life?" speech).
Or you may tap into our LINKS to Support Groups and join online
discussions in more than 20 newsgroups dealing with specific
illnesses such as cancer, AIDS, arthritis, cerebal palsy,
tinnitus, prostate problems, post-polio syndrome, and many
other diseases or disabilities. Here you may share the
experiences of people who are coping with an illness or
disability; then you can contact them personally by email or
as a group through a public message of your own. A great deal
of valuable information can be exchanged with fellow-sufferers
of an illness.
Other services offered by DeathNET: You may read some of the
world's best "right to die" publications online (such as the
VESS Newsletter published by the Voluntary Euthanasia Society
of Scotland); browse through John Robert Colombo's Canadian
Quotations on Death and Dying (everyone from film director
David Cronenberg to Prime Minister Jean Chrétien has something
to say on the topic); there are also direct connections to a
wide variety of online services (WEB sites, Gophers, mailing
lists or Usenet newsgroups) dealing with grief, bereavement,
caregiving, and personal counselling. We also provide indepth
news coverage on "right to die" issues that is more extensive
and reliable than what people normally get from the
establishment media.
DeathNET provides this information to people all over the world:
no area is too remote. Anyone with a computer, modem and a
telephone connection can reach our WEB-service around the
clock. All of this is provided (potentially to millions of
users) at a fraction of the cost of producing one issue of
Last Rights magazine (reaching about 2,000 subscribers and
perhaps 3,000 readers).
For some people however, there is no substitute for the physical
presence of a book or magazine: something they hold with
pages they turn and with high-resolution photographs to look
at. To them, DeathNET may seem like so much flotsam in
cyberspace.
But given the sheer quantity of material pertaining to death and
dying, chronic illness and patients' rights, assisted suicide
and euthanasia, a publication such as Last Rights cannot cope
with all that deserves to be noted and disseminated. Only an
electronic online service such as DeathNET can provide
something close to comprehensive coverage of "right to die"
issues for Canadians and Americans.
Even so, DeathNET cannot supply all the answers needed. But we
will do our best to make sure that the information provided is
sound and reliable. DeathNET is content-oriented: while the
mainstream media tend to be preoccupied with adding false
excitement to any story: a process that does not educate but
obfuscates and confuses.
Judging by media coverage of the Canadian right-to-die movement
in the past two years one gets the impression that Sue
Rodriguez is the only terminally ill person to have had an
assisted death. Such an impression is false. It is also
counterproductive as myth. At the political level, the
perception that the "right to die" movement is embodied in one
singular individual leads to such reactions among MPs and
Senators as: "You don't change Canada's laws for one person"
or "Hard cases make bad law." To make matters worse, when too
much media attention is given to any one man or woman in this
field the worth of right-to-die arguments and proposed
legislative changes tend to be judged more on the basis of his
or her personal character rather than on the intellectual
merit of the issues.
We embrace the Internet as virtually the only place where people
can learn the deeper and fuller truth about "right to die"
issues. Through a remedial information service such as
DeathNET they may obtain more of what they need to know to
make intelligent "end of life" decisions for themselves and to
understand what is really going on in the right-to-die
movement.****
There are many subversive elements on the Internet (as the
corporate mass media never tire of telling us) and the most
subversive of all is the intelligent interaction of
independent minds.
-----
**** An encouraging note: Island Office Trends, a Victoria,
BC-based company offers "computer orientation" sessions for
$10 to people over 50. The classes feature both IBM and
Macintosh computers and a variety of software programs. Call
604-727-7624 for details.
=====
Online Services of the Right to Die Society of Canada:
DeathNET (World Wide Web)
Best approached using Netscape Navigator
URL: http://www.islandnet.com/~deathnet
The only WEB site on the Internet devoted to "end of life"
issues
-----
A Time to Die
(Edmonton, Alta)
Access by modem: (403) 455-6298
A Time to Die is the Society's own BBS (based in Edmonton, Alta)
operated by member Bruce Hutchison. A first-time caller is
asked to register online (the system then calls back to
confirm that registration has been accepted). Thereafter the
registered user is free to read online or download a
steadily-expanding range of "right to die" materials that are
otherwise hard to find.
For instance: the entire text of recent issues of "Last Rights"
(with the exception of articles for which we do not hold
copyright) has now been been compressed into pkzip files.
Thus, all of the text of "Last Rights" Issue #12 (68 pages)
can be transmitted electronically in less than 5 seconds from
the BBS to a home computer using a 14.4 baud modem. The
reader then unzips (uncompresses) the file to read specific
articles. We are currently seeking ways of linking this BBS
to the Internet.
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Toronto FreeNet (TFN)
LAST RIGHTS Information Centre
Telnet to TFN: freenet.toronto.on.ca - or - torfree.net
Direct dial by modem: (416) 780-2010
Logon as guest or with registered user ID.
Type "go rights" at the command line.
(Co-moderator: Ruth von Fuchs; email:
rights@freenet.toronto.on.ca)
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National Capital FreeNet (NCF-Ottawa)
LAST RIGHTS Information Centre
Telnet to NCF: freenet.carleton.ca
Dial by modem: (613) 564-3600
Logon as guest or with registered user ID.
Type "go lastrights" at command line.
Moderator: Stan Rosenbaum (email: au748@freenet.carleton.ca)
LAST RIGHTS Information Centres are expected to be installed by
February, 1995 on the Calgary FreeNet, Edmonton FreeNet and
the BlueSky FreeNet in Winnipeg. Most of the FreeNets will
offer a lynx (text only) connection to DeathNET.