Found some more old stuff (I thought I'd completely lost it but found it in a web back-end, kindof like behind the dumpster, under something unmentionable ..)..
I used to edit a magazine for people living with AIDS in Sydney. I got very involved, as you do, and the whole experience was painful/joyful. I wrote, basically, a diatribe after I was ignored in an 'anniversary' edition after i left. as you unfortunately do. enough said.
anyway. it had some good stuff, still relevant I think in describing something of what the net can do for communities.
Cast of characters:
ACON is the big HIV/AIDS organisation in New South Wales
Talkabout is the magazine I edited.
PLWHA = people living with HIV/AIDS
Section from unpublished article, November 1998
(Suggestion Two): Invest in the future - Get Talkabout and the whole kit and caboodle onto the Internet.
It was searching for HIV/AIDS treatments info to put into Talkabout that actually got me using the net (now it's my job).
1995 was a big lull period in activism. Act-Up had finally folded and this was before the first protease inhibitors. I had to plough through three plus month old newsletters at ACON Library and climb a steep learning curve on what was actually news.
Then I met the Internet.
Even in 1995 there was a wealth of information out there, it was like going from the proverbial famine to feast. Pioneers like the Sisters of St. Elizabeth of Hungary [based in LA., see http://www.aegis.com/] were getting the info out and people were using it to secure change.
In a very short space of time we have come to the point where for individuals, staff or committee of agencies, life without the net, especially email, is hard to imagine. But this personal experience has yet to translate into a grasp of the community wide possibilities.
Such as? Well take the example of community legal centres. They have what's called an 'intranet' which links them all up. They can communicate and debate easily and find legal decisions and other information quickly. They started setting this up in the mid nineties. How useful would this be for those working in HIV/AIDS? Doctors already have access to such databases.
Another example is the development of small electronic support groups for those with very particular interests and very particular needs. The OzPoz list specifically for HIV+ gay men does this as does OzPlus and PosWomen. The net has the ability to easily link people despite geographic distance. This is part of the chaos of the net and it's essential function, which is communication. It is also basically confidential, an important point to PLWHA.
Despite these enormous new possibilities to improve lives and improve the information flow my impression from people working in HIV/AIDS is of sheer paralysing bewilderment on what to do. There seems to be this perceived need to 'get it right', which I interpret as betraying a deeper fear, born of bureaucratization, perhaps of the net itself and it's 'freeing' of information - there is no 'right' on the net. It isn't about publishing but communication. and you first get your web site up there, then you learn how to make it work well. Not the other way around. Things change too quickly.
A example of such paralysis is AFAO's new web site, which bases it's navigation entirely on plug-in software that many users wouldn't have or their computers couldn't handle (the same plug-in you'd see on a Warner Bros. or absolutvodka.com site). This ill-informed choice means that many visitors wouldn't get past the start page. It looks cute but isn't relating to it's audience. It's essentially about placing brochures in another medium and looking 'fabulous' but as we all know from our own sex lives that doesn't necessarily guarantee a good root.
That site says to me 'we are here by sufferance and aren't the least bit interested in where this might take us'.
ACON's absence of website says it all.
The net will remain inaccessible to some people, just as some people don't have access to a car. But the potential for the delivery of accurate, timely and useful information to people (at a minimum, if you give me two more pages I could outline lots more things the net can do) means that it should be *made available to people. This could mean anything from providing a list of net cafes and used and approved web sites to supporting development of net access at places like the Sydney PWA Centre.
Like the phone, the net is no longer an added extra or a luxury and any continuing failure to take up the possibilities means that ordinary PLWHA aren't getting the best service.