Strength in numbers: The Institute of Many (TIM)

‘When I was diagnosed TIM did not exist and for five years I went on with life not knowing other people in the same situation. Now this sense of community has given us a cause and has, for me at least, broken down that sense of isolation.’

— TIM Member, 2015

In just two years, The Institute of Many (TIM) – a peer run social network and advocacy platform for people living with HIV (PLHIV) – has grown from a tiny collective of poz gay men communicating via email group, to being recognised as major player in Australia’s HIV landscape.

While TIM may represent a new model for engaging people living with HIV, it is by no means intended to substitute the work of established agencies, organisations and services across Australia.

Our aim is to work with these organisations, not against them. The landscape of PLHIV community representation and support is shifting.

The pressure for this shift is coming from above, as funders drive service delivery into a world of competitive tenders, and from below, as the needs of the PLHIV community become more diverse.

How the HIV sector responds to these pressures will either ensure Australia’s continued leadership on HIV, or cement this author’s fear that Australia may rest on the laurels of triumphs past.

TIM’s history

‘I never had my shit together with my HIV before TIM, no support, no camaraderie, no mentors, and I was under-informed … being amongst you all has changed that and subsequently changed me for the better/stronger.’

— TIM Member, 2015

TIM began – rather fittingly for an origin story – at a Genesis workshop in November 2012. ACON/Positive Life NSW co-delivers this weekend workshop for newly diagnosed HIV-positive gay men.

I was only a few weeks into my HIV diagnosis, as was fellow participant, an American man named Jeff Lange. Jeff and I bonded over the relative ease with which we dealt with our new status.

At the end of the workshop, Jeff wanted to know what was next. Where did poz men go to meet, ask each other questions and share stories?, he asked. The answer, ‘There really isn’t anywhere,’ didn’t satisfy him.

Jeff had started a social group for gay men in his native and deeply homophobic South Carolina and thought something similar for poz men might work in Sydney.

Meanwhile, at three weeks into my diagnosis I already had an overwhelming feeling that I had something important to say about HIV.

My relative ease with being diagnosed HIV-positive meant I felt a responsibility to those who didn’t get such a comfortable ride.

I didn’t want anyone to be ashamed of his or her HIV status, and neither did Jeff. So, with the dual purpose of increasing community engagement and political awareness in mind, we started TIM.

From the very start, ACON was excited by what we were trying to do and offered to help any way they could – without actually owning TIM. In order to be successful, ACON recognised that we had to be completely community owned and free from any ‘sector’ influence.

This ‘hands-off ’ approach to support continues to this day, and has extended to a number of other AIDS Councils and PLHIV organisations who have been involved with our work. TIM would not be as successful as it is without this approach.

By April 2013, we’d hosted a couple of events but had begun to realise that our group email approach to communications was becoming rather cumbersome and one-sided.

Inspired by the old adage of HIV promotion: ‘go where they already are, don’t ask them to come to you,’ we looked to social media and set up TIM as a private group on Facebook.

I laugh now, recalling the early days when we only had a dozen or so members and I’d have to post articles every couple of days to try and encourage discussion.

TIM today

‘I have learnt that everyone’s journey is different, each story unique, but we have one, common thread that binds us all together. I value the thoughtful debate, support, conversation and differences of opinion.’

— TIM Member, 2015

Today, the TIM Facebook group has almost 1,000 members from around Australia and overseas.

This digital gathering space has fostered the development of meet-up chapters in Sydney, Melbourne, Brisbane, Adelaide, and Perth, and inspired similar digital/ meet-up groups in New Zealand and Japan.

Members identify as gay, straight (men and women), bisexual (men and women), cisgender, transgender, intersex, and queer.

The vast majority are in Australia, but we also have members in New Zealand, USA, Canada, UK, Europe, Mexico, Malaysia, Singapore, Japan, Hong Kong, the Middle East, South America and Africa.

TIM’s international membership, as well as our sexual and gender diversity, provides a variety of voices on HIV. Not to mention some much-needed perspective for those who sit atop the ‘pyramid’ of HIV privilege.

TIM’s digital space allows members to ask questions about HIV, post articles, and generally engage with their peers.

Topics such as stigma, disclosure, sex and dating, treatment uptake and side effects, criminalisation, lived experience, AIDS history and survivor trauma all come up regularly.

The most frequently asked question tends to be: ‘Anyone else experiencing “X side effect from X meds?”’

I’m proud to say that numerous members have been motivated to change their treatment regime after realising they didn’t have to accept certain side effects as just ‘part of being HIV+’.

I make no bones about how we moderate the TIM group. We’ve had a vision for TIM since day one, and that vision has always been expressed on the page.

Over time, as issues came up, we established a posting guide that covers everything from the classic, ‘use “I” statements,’ to attempting to curb the seemingly endless pool of negativity we can draw on as people living with HIV, and instead encouraging members to focus on more positive and proactive ways to address issues.

TIM’s values

At the end of 2014, TIM was turning two and the tone of the Facebook group was going the way of so much HIV discourse: victim mentality, petty arguments, some sector interference, and generations of bad blood had created a tense, toxic environment that saw some long-term members walk.

With that in mind, we conducted a survey of TIM members to establish the group’s values. It has been a turning point in the way TIM is managed.

Over one-third of our members completed the online survey, the results of which were shared within the group to establish a firm point of the view about the organisation and its values.

It’s important to note that anyone who disagrees with these values is still welcome to be a part of TIM; however, when discussions turn into arguments (an unfortunate by-product of any online discourse), these pre-established values help draw a line underneath what could otherwise be endless threads that quickly become personal.

TIM’s values cover issues like lived experience, generational points of difference, the inclusion of women and gender diverse PLHIV, drug use, sex work, condoms, PrEP (pre-exposure prophylaxis) and TasP (treatment as prevention), criminalisation, resilience, disclosure, and living openly as an HIV-positive person.

Part of TIM’s success has been based on bringing together HIV-positive people with very diverse opinions, and we want to continue to encourage that diversity.

We acknowledge that there is no perfect answer that represents the views of all people living with HIV, all of the time. However, we have unashamedly set our sights on moving the community forward.

Enabling a culture of endless arguments without an overarching sense of purpose contributes nothing to the community but hot air.

In April of this year, one of the women in TIM approached us about setting up a TIM Women space on Facebook. Like the main TIM group, TIM Women is an experiment that relies on its membership to stay alive.

Our hope is TIM Women will use the TIM model of community engagement, and our forward-facing values, to provide HIV-positive women with a new space to connect.

TIM’s advocacy

With TIM’s community engagement strategy now firmly established, we are also moving into the advocacy space. We’ve just launched a harm reduction resource aimed at HIV-positive gay men who use crystal meth, the final result of a nine-month collaboration with Living Positive Victoria.

We have also put our name to the Victorian AIDS Council’s #ApprovePrEPDownunder campaign.

We have contributed to policy documents for political parties, and regularly provide media with public-facing members who speak to their lived experience as people living with HIV. The ongoing community dialogues taking place in the TIM space continuously inform our advocacy.

TIM’s challenges

‘I love meeting people just as passionate to make a difference in my community.’

— TIM Member, 2015

TIM is an experiment in community organising, and much of that experiment has been a baptism by fire. We’ve certainly overshot the mark as moderators in the online space, sometimes being too heavy-handed and other times, too lenient. Establishing a code of conduct that can speak to the highly individualistic experience of people living with HIV has resulted in members leaving the group, sometimes after a heated debate.

We recognise that TIM is not for everyone, nor can it be. The larger we grow, the more diverse the opinions, and the less likely it is everyone will agree with our vision or values.

What’s vital is that we keep scrutinising our vision to ensure it remains current and responsive, ensuring that we don’t bend to the will of those who oppose it just to keep our membership numbers spiking.

As TIM grows by the day, our survival is dependent on establishing a sustainable model of financial and political independence, whilst still working in partnership with established organisations.

What we must not become is genuine competition. We are not interested in the competitive tenders that already threaten to see the sector pitting agency against agency – quite honestly, we’re not equipped to deliver services to high needs clients. Nor are we interested.

It seems must make that stance better known though. TIM was identified in a recent National Association of People Living with HIV (NAPWHA) member’s survey as a competitive threat. This is clearly an issue, as all our collaborative efforts with HIV organisations have been (to date) highly successful.

TIM tomorrow

If you asked me 18 months ago what TIM would look like mid-2015, I couldn’t have predicted it. I hope as governments make greater demands on organisations to do more with less, TIM can continue to work alongside those service providers and support their long history of engagement with people living with HIV.

Should we be unable to sustain financial support or community endorsement, my hope is that the TIM model can be used for future endeavours in engagement with HIV-positive people in Australia and abroad.

TIM by no means reinvented the wheel when it comes to community engagement, but what we’ve managed to achieve thus far is palpable. I, for one, think we’re just getting started.

For further information about TIM visit: www.theinstituteofmany.org

Nic Holas is a freelance writer, HIV activist, and co-founder of The Institute of Many.