Health sites and memories

A friend pinged with with info about a patient community website he'd just found; Patients Like Me.

He'd found it very useful to exchange experiences and information with those with his condition. I had a look around the site and found thriving communities, including one for HIV/AIDS.

This took me right back to two decades ago (gulp) when the first internet responses to AIDS appeared. In the early 90s I edited a magazine which needed the latest research information. This, literally, came off the boat, so was several months old. So when I encountered the net it was with astonishment that all this info was there and brand new!

The info was pure text and basically a fairly unusable, certainly unsearchable, database interface. But it was astonishing.

What I was looking at was the AIDS Education Global Information System (AEGiS), which is now the world's largest Database of AIDS information. (The only resource larger is the U.S. National Library of Medicine, but it only offers some of its information on a website).

Since 1992, AEGiS has sought out scientific abstracts from local, regional and international AIDS conferences, related news, reports, and journal articles and compiled them a fully-indexed, cross-referenced and keywords searchable database.

The site is deliberately light on visuals that would make it difficult to access for those with slower computers.

It was originally started as a small electronic bulletin board system (BBS) by Jamie Jemison in 1986. Sister Mary Elizabeth Clark, a transsexual pioneer, and US Navy/US Army veteran took it over in 1990, inspired by meeting an isolated young man with AIDS in rural Missouri. Under her direction and tireless effort, the database grew and grew.

She worked 18-hour days from the living room of the mobile home she shared with her aging parents. It sits just across San Juan Creek near LA from the new 1,700-square-foot office, which Clark's 93-year-old father, Ed, happened upon and recommended for AEGiS just months before he died. They moved into that office only a few years ago.

AEGiS is nowadays funded by the US National Library of Medicine, Elton John AIDS Foundation, Boehringer Ingelheim, Bristol-Myers Squibb, John M Lloyd Foundation, Roche / Trimeris, and the Bridgestone/Firestone Trust.

Sister Clark is one of my heroes, a real web pioneer and a true inspiration.

She's received many awards including the 'Award of Courage' from the American Foundation for AIDS Research, and the Human Rights Award from the International Assn. of Physicians in AIDS Care. AEGiS was nominated for U.N. honors in 1999, 2001 and 2003.

Another hero and inspiration is epidemiologist Elizabeth Pisani.

HIV/AIDS work is very political, including in affected communities, and that slants priorities and funding.

A good example would be the lack of promotion for many years of a 'negative' status for gay men - it was seen as somehow undermining HIV+ gay men. I suffered a lot of grief for that view when I worked in the area.

Pisani talks a lot of sense on these sorts of topics:

The problem, Pisani says, is that 80% of the Pepfar (Bush's AIDS initiative) budget goes on treatment. "Pepfar says great, we've got 1.8 million people in treatment. And next year it will be another 1.8 million! That will mean 3.6 million people. It's exponential - and that's the biggest question mark over the entire approach to Africa. The more treatment you have, the more infection you get."

ARVs [antiretroviral drugs] reduce people's viral load, she agrees, making them less likely to infect someone else - as long as they don't miss a single dose. "But it also keeps them alive longer, and healthy enough to want to have sex. You only have to look at the experience of the UK or US gay communities where we've had more or less universal access to ARVs for at least eight or nine years, and the number of new infections are rising. More people are living longer with HIV, and there is what we call behavioural disinhibition: 'Fuck the condoms, I don't need them any more, because if he's positive he'll be on drugs, so he probably won't infect me. And if I do get infected, it would be annoying, but not the end of the world.'

"But having Aids is not a picnic. Yes, it's great that all this stuff on treatment is happening. But it becomes all the more urgent to have effective prevention. And that's not happening."

"Is not a picnic" is putting it mildly, you can expect to live around 25 years on ARVs. It makes me despair that so many young gay men are condemning themselves to shorter lives without a single clue that this is what they're doing by ignoring the condoms. Plus the government is cutting back on preventions spend.

Pisani did a few interviews in the UK last month for her brilliant book The Wisdom of Whores: Bureaucrats, Brothels, and the Business of AIDS.

On News24's HardTalk, professional dick Stephen Sackur spent a lot of time quizzing her about 'mafia connections'.

• You can watch the interview here (23 minutes, RealVideo)

By contrast Andrew Marr, was more interested and asked great questions.

Her blog is also called The Wisdom of Whores.

Found: Invest in the future

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.

Found: The net closes

I actually found some old stuff, old writing, from the 90s, through the webarchive the other day. Stuff I never thought i'd see again.

y'know. some things just get lost ..

This wasn't it! But it led me to re-read this article and - gee - I think it still holds up and things haven't advanced much. Since 1999.

This is about Internet filters ...................

Context: the Australian Government (Party is 'Liberal' in name but conservative) proposes knee-jerk Internet Censorship law. Little opposition. I managed to get the gay community stirred up but only the tekkies really join in. You won't have heard much since (or here, or anywhere much except Saudi Arabia and the States).

The impact of Filtering has barely registered since .... you do hear the very occasional story about over-blocking but concern?

The main characters:

Brian Harradine (born January 9, 1935), Australian politician, was an independent member of the Australian Senate from 1975 to 2005, representing the state of Tasmania. He was the longest-serving independent politician in Australian history. Noted catholic + homophobe.

Richard Alston (born 19 December 1941) — aka 'the world's biggest luddite' —was a Liberal member of the Australian Senate from 1986 to 2004, representing the squatters of Victoria. He was Minister for Communications, Information Technology and the Arts 1998-2003. He is now Ambassador to the Court of St. James.

Mal Colston — aka ‘venal prick’ — was an Ex-Labor Party Senator, "who sold his soul to the Libs in exchange for getting deputy president of the Senate" and was the government's Senate majority vote for a time.

From: "Paul Canning" To: "EFA stop censorship list" Date: Thu, 13 May 1999 18:50:48 +1000 Subject: [STOP] The net closes n.b. this article will be published in City Hub (May 25) in an edited form. The net closes Paul Canning Harradine is a joke; Colston is a big joke. And the fate of the net access we've grown used to rests in their hands. At the time of writing it is unclear whether the government will get its Internet Censorship legislation through before it loses its balance of power in the Senate at the end of June, though it looks likely. We face a net censorship regime more restrictive than Malaysia's or Singapore's. One that has been shown by everyone from the CSIRO to IBM to be unworkable, that will systematically promote discrimination, that will badly compromise small Internet Service Providers, place content creators outside the law and is wide open to mischief makers. Just one element, the requirement that access to material rated 'R' using the film and video classifications use adult verification (AVS), not only highlights the act's absurdities but will make a lot of valuable Australian content harder to find. AVS presents an enormous barrier to Internet users leading to huge drop offs in site visits. Search engines will not index websites using AVS and there are big privacy concerns. The R standard is "material considered likely to be harmful to those under 18 years and/or possibly offensive to some sections of the adult community." Some (non-porn) websites are already considering moving overseas because of this. One Nation's news site has already gone. The government says that using offline film ratings is appropriate because convergence with other mediums will make the Internet more like TV -as Jon Casimir put it in the Herald, "I reckon TV is more likely to start looking like the Net than the other way around". But the real reason they were deliberately picked was to force more restrictive censorship. The Committee allowed less than seven days for comment on the actual bill, which was worse than outlined in the initial proposals. There is no doubt that this has happened at the speed it is happening because of Harradine, but the bill fits with Alston's moral vision. The Herald's Alan Ramsey described Alston as a "hard man of cabinet" and we've seen that throughout the net censorship debate, with a barrage of outrageous statements against the bill's opponents alongside technobabble about how 'easy' it is to censor the net. It's worked. The media has seen the bill as simply about blocking porn to the kiddies - and who in their right mind opposes that? The 'it won't work' angle, pushed by the Industry, backfired as Alston appealed to general non-net community disquiet about 'nasties' and castigated industry whining over the costs. Civil liberties and privacy have disappeared as issues. The Select Committee's report doesn't even bother to mention them. What has been achieved is a hardening of Labor and Democrat opposition to typical and world wide, knee-jerk proposals like this bill. Both now support regulation of filter products, which the gay and lesbian community pushed for. Internet service providers (ISPs) are going to put user's net access through filters on proxy servers to comply with the demand that overseas 'offensive' material be blocked. Unregulated filters are one of the greatest long-term threats to online liberty. Relatively new technology, filters are notorious for their 'collateral damage', often perceived as a mere by product. Hilarities like the blocking of 'button' because of that word's first four letters operate alongside systematically blocking of particular topics. Impacts like 'over broad blocking', where entire servers like free space providers Tripod or GeoCities which house many small Australian community groups are blocked, isn't seen for what it really is; bulldozing a library with a couple of dirty books on its shelves. Mainly they're American products and carry American values but if you use the new Australian 'family friendly' search engine iSEEK, based on American technology, certain search terms will be blocked - like 'queer', 'heroin', 'bisexual, 'sex education'. When I tried it a search on 'paedophilia' iSEEK threw up a link to a pro-paedophilia site. Within twenty-four hours of my circulation of this information the blocked search terms had mysteriously changed and 'paedophilia' was blocked. Before it had blocked 'suicide' and 'rape'. The producers of iSEEK, Brisbane Company Infopro, say in their PR that the technology under iSEEK "does not restrict access to any worthwhile sites". Filters disproportionately effect some groups - like lesbians and gays, and also feminists and drug educators - but they also diminish the net's educational value to all. St Vincents Hospital Melbourne's filter won't allow access to an HIV information site. Having looked at the site I still cannot work out what element (image or text) triggered the blocking. Without any sort of regulation filters will entrench discrimination. When governments are pushing kids onto the net and hence kids are using it as a primary information source it's either irresponsibility or deliberate tactics that they will find it hard to access info like sex and drug education. This is already happening in the NSW eduction system, which uses an American filter called SmartFilter. Numerous teenagers as well as adults in TAFE colleges have reported blocked access. SmartFilter has been found to block the U.S. Constitution, the Declaration of Independence, anti-drug information, the Koran and the Bible. Locally, the Star Observer found SmartFilter blocking Parents and Friends of Lesbians and Gays (PFLAG) and HIV/AIDS fundraising organisation the Bobby Goldsmith Foundation (BGF). Craig Smith, Executive Director of the Getting Real Association, producer of websites for teenagers about health and welfare issues, says that he builds the limitations imposed by filtering and monitoring into his site design. Students trying to access a NSW Health Department supported website 'Make A Noise' often complain about blocks on pages at the site, predominantly those about sexual health. "The main 'filtering' topics seem to be sex, gambling, criminal skills, hate speech and drugs. Which makes things a little hard when you are talking about sexuality, and quite often violence and drug and alcohol issues," he says. When youth advisory boards put together the 'Getting Real' site (aimed at gay teens): "there was a huge focus on ensuring that the site did not contain some overtly sexual or queer name or design because of the chance that school or library tracking/filtering would identify the kind of sites they had been accessing." Fear of the monitoring they perform is one of the main ways filters do stop access. They record where people have been and this stops people accessing things that someone thinks they shouldn't. This doesn't mean just porn sites. This means a fourteen-year-old girl stopped from accessing sexual assault information on the net because the parent assaulting her will find out. Monitoring is a big selling point with filters. The free 'The Internet Filter' (TIF), sold by One Catholic Super-site (Australia), is being promoted thus: "It can be used in effect to spy on employees and gather information on people's choices." Alston has talked up a new Australian filter, Internet Sheriff, produced by Queensland company Clareview (they get a big run in the Committee Report). Yet this supposedly 'bleeding edge' software has already been shown to 'accidentally ' block the National Party's and school websites amongst others. Filters cannot block all porn or other 'nasties' from kids because they cannot review all the estimated 36 million websites worldwide, and 'keyword' based blocking doesn't always work. You wouldn't know this from reading the marketing blurb and they won't tell you what's on the banned lists (it's a 'trade secret '). Less than 24 hours after the Colorado school massacre CYBERsitter was touting "an informational Web site for parents concerned with what their teens are accessing on the Internet." CYBERsitter, a favourite of the American religious right, even scans your hard drive while it's being set up and if you've visited certain anti-censorship websites it won't install. No controls on such products exist, although use of the Fair Trading and Anti-Discrimination laws is being explored. It's effectively the privatisation of censorship through the decision making of ISPs and filters that is happening. The government's doubletalk on 'education' campaigns about filters is shown for the farce it is by a look at the Australian Broadcasting Authority (ABA) 'family ' page. It literally advertises filters and doesn't detail the cons. Most parents and educators would be unaware of the real impact which filters are having on kids information access, and I doubt that they would count such blocked access as an acceptable 'trade-off' against concerns that minors may view 'objectionable' content online. What the law will do The whole thing is based on complaints and will be run by the ABA and the Office of Film & Literature Classification (OFLC). Neither of which could give me a straight answer as to how it'll work in practise. If the ABA labels your content R you have to put on an AVS within 24 hours or the ISP gets fined $27k a day. If it's RC or X they have a day to take it down or be fined. ISPs are supposed to take "reasonable steps" when the ABA wants overseas RC or X content blocked. This means filtered access. If you want to get a rating for the OFLC be prepared to pay on a 'cost recovery' basis. Content providers can't complain because ISPs will be legally indemnified. ISPs cannot give children access without parental consent. Mail in "stored form" in not excluded but no one knows quite what this means. It could mean that anyone with a email account could be ordered to 'take down' files on their hard drive because it could be mailed to someone. Mailing list archives and bulletin boards will be effected. How to take action Join Electronic Frontiers Australia's protest march, Saturday May 28, 1pm, then to the OFLC and ABA offices. Sites to visit: Electronic Frontiers Australia for action details http://www.efa.org.au/ Peacefire (dissecting filters) http://www.peacefire.org/ Senate Committee report http://www.saia.asn.au/ ICON's story http://www.smh.com.au/icon/990508/cover.html Broadcasting Services Amendment (Online Services) Bill (zipped Word file) http://www.aph.gov.au/senate/committee/legislation/doc/online99-doc.zip Copyright: Paul Canning, 1999. Permission granted for reproduction for activist purposes only. All other reproduction requests to author at canning@rainbow.net.au

• Electronic Frontiers Australia: 1999 Campaign against Australian Net Censorship Laws
• 1999 Protest against the censorship bill -sending a copy of Orwell's "1984" to all MPs
• Website Internet Censorship & Civil Liberties in Australia of ole mucker Danny Yee
  

Peacefire are my heroes! They're American kids who organised themselves against the big, filter companies. They say:

Why we do this
What should be the minimum age to get a library card without a parent's signature? How old should you have to be to get medical care without your parents' consent? At what age should your parents no longer be allowed to pull you out of sex education classes at school, or even pull you out of the whole school? I think that most people have never thought seriously about the answers to these questions.

Damn right.