Positive speaking: The Changing Voices project

HIV Australia | Vol. 10 No. 1 | June 2012

MAX NIGGL discusses how a DVD resource about living with HIV has been successfully adapted for a range of digital media platforms.

'Changing Voices' is a DVD project that uses first-hand accounts of people's experiences of living with HIV as an educational tool. The DVD was produced by People Living with HIV/AIDS (PLWHA) Victoria in 2010 and has become our most popular digital resource to date.

People may think of a DVD as an out-dated format, given the constant changes in media technology that we are now accustomed to. With this article, I want to challenge that notion and show how a DVD can still be an effective tool - and one that can be adapted for a variety of other digital media platforms.

 

Changing voices in changing times

With the Changing Voices project, we wanted to develop an innovative, enduring record of Australian stories about living with HIV, told by people living with HIV (PLHIV), and using a range of creative digital media tools. We also wanted to challenge the stereotyping that still exists around people living with HIV. To do this we wanted to produce a cinema quality DVD that could be used in a variety of applications.

In the decade 1995 - 2005, there were few stories about people living with HIV that were easily accessible. This was during a time when HIV medications were dramatically improving the lives of HIV-positive people, and we were no longer confronting mortality in the way we had been. I was concerned that the stories and knowledge about the actualities of living with HIV in this period were not being documented and would be lost.

 I wanted to produce a resource that would engage audiences with short stories, simply and effectively told, communicating key messages about HIV prevention and HIV stigma. I also wanted a resource that would promote the work of our Positive Speakers Bureau and increase demand for our speakers in educating the broader community.

 The three broad aims of the project were to:

1. Create an increased demand for PLHIV speakers to share their stories.
2. Facilitate PLHIV's decision to publicly disclose after seeing other PLHIV stories.
3. Reduce HIV stigma and discrimination in the broader community when face to face communication with PLHIV is unavailable.

Changing attitudes

In wanting to change community and behavioural attitudes towards HIV, we know that meeting a person living with HIV breaks down many of the barriers and myths about HIV. Because of the consistent evaluation we do, we know that our PLHIV speakers make a significant impact on audiences and are extremely effective at delivering safe sex messages, achieving significantly high audience recall.

Our speakers work in accordance with the UNAIDS GIPA Principle - the greater involvement of People living with and affected by HIV and AIDS. In other words, speak with us NOT for us. In talking about the realities of living with HIV, our speakers constantly challenge the stereotype about people living with HIV that still exists.

Last financial year, our speakers spoke to 9000 Victorians, using their story from the Changing Voices DVD as an introduction - thereby engaging audiences with digital media before their personal narrative commences. Imagine the ripple effect if every person who saw our speakers spoke to their friends and family. Then imagine the effect if those stories were accessible online - this has the potential to achieve some pretty amazing audience numbers.

We have used other digital media platforms including Facebook and YouTube to expand the reach of the Changing Voices DVD. Our PLHIV speakers play a significant role in HIV education, in safer sex and STIs education; working with their peers, the broader Victorian community and now - with Changing Voices - the global community.

Capacity Development

While we easily recruited 12 speakers for the Changing Voices project (including myself and Sonny Williams - the EO of PLWHA Victoria at the time) we still had quite a few issues to contend with. Can you imagine asking 12 people to tell their story in front of a camera and to know that their story is going to be seen by countless people around the world? Not only that - they will be disclosing their HIV status too. So how did we do it?

Having a number of speakers already trained in media and effective communication meant we were fortunate - however, as some of those speakers were not available at the time of production I had to recruit some younger and less experienced speakers for the DVD. So we had some capacity building to do before we could proceed to filming.

We also needed to have significant trust in a media company who could work with our speakers and who understood the realities of living with HIV. We employed Media Strategies who had done media training workshops for our speakers on two previous occasions. They had been extremely impressed with the quality of our speakers and we had built a great rapport with them. They were also extremely generous in giving us a significant discount that allowed us to produce the DVD with our meagre budget of $3000 - a fraction of the quotes we received from other media companies.

Two media training workshops were held and the training was filmed. Each speaker received a DVD and suggestions on ways to improve their media presentation styles.

A six-week creative writing workshop was also held to allow our speakers time to reflect on their experiences and to express their thoughts in writing. Many participants found writing about their experiences emotionally challenging, but the work they produced was so good that we created a book called Closer which is available on our website.

In preparing for the Changing Voices DVD, speakers were asked to document their own story of living with HIV and to think about one key insight to share. They then refined this narrative by creating a 'story map' using concise points, trimming away all details that were unnecessary to the message. The points used in the story maps served to reinforce and add human interest to the key insight chosen by each person, creating emotionally engaging stories told by PLHIV - NOT by actors.

For example, a key insight could be: 'Communities need to see and hear positive people who look and sound like them.' Key story points could be, 'I have a three year old HIV negative child, I was trusting and in a loving relationship, I never thought this would happen to me, I learned a lot very quickly - and made the choice to have my child, HIV positive people need education resources and support'.

After many meetings with the speakers and the producer we were able to finesse the style of interviews prior to filming. Six very intense weeks of preparation and we were ready for lights, camera and action!

Challenging stigma

Our third major aim for the DVD with our PLHIV speakers is to challenge the stigma that surrounds HIV. Stigma directed at people living with HIV is primarily about fear and mythology surrounding HIV and AIDS as a result of lack of education. Many PLHIV also internalise stigma and our speakers are perfectly placed to address this with their peers and the broader community.

The most effective way to challenge stigma is through education. PLWHA Victoria piloted a Facebook campaign called Let's stop the stigma. Most of the Changing Voices DVD speakers' stories were featured in the Facebook posts, and we were impressed with the level of interest and increased web traffic that these stories generated.
Lets stop the stigma Facebook post
A significant spike in web traffic occurred with posts that featured video stories of PLHIV speakers. For example, over a 2 week period in 2011 Darren received 255 views and Deanna received 280 views - more traffic than posts which used word text only.

Darren says he has been empowered by participating in the process and has subsequently become one of our most requested speakers. He is passionate about talking to secondary school students and young gay men. Darren says that putting a human face on HIV has an extraordinary impact on audiences. As he explains:

'The "Changing Voices" DVD project was a great opportunity for me to put a younger face of the HIV experience out into the wider community. By sharing a bit of my story I hoped that I would provide something that all people, but especially younger people, can relate to. And by putting a face to my story they might better understand that HIV can happen to anyone. Being part of 'Changing Voices' was an empowering process that helped galvanise me to continue developing as a Positive Speaker and meet the challenge of educating many audiences, be they in schools, health settings or other community forums.'

In addition to Facebook, we also uploaded the DVD onto YouTube , and our website1. Making the content available on a range of digital media platforms, as well screening the DVD at schools and other agencies when our PLHIV speakers present have provided multiple opportunities to address HIV stigma.

Lessons learned

We learnt a number of valuable lessons throughout this project. Key recommendations for the future include:

  1. Recruit and train more speakers to deliver key HIV prevention and safer sex messages to community and peers via the internet and digital media.
  2. Further increase the capacity of presentations speakers can physically do by utilising web based digital and social media.
  3. Encourage more PLHIV speakers to be public about their status on the internet.
  4. Provide increased internet accessibility to allow greater empowerment of PLHIV globally.
  5. The mode of production used to document people's stories can be adapted for resource poor and remote settings; for example, content shot on a mobile phone can be just as effective as content filmed in a professional recording studio
Our speakers have gained greater confidence and pride by presenting their DVD and communicating with audiences whose responses are overwhelmingly positive. There has also been a quantifiable increase in trainee speaker applications and speaking engagement requests from the website.

Co-launching the Changing Voices DVD stories with our new website also increased the number of unique visitors to the site. By putting the PLHIV interviews on Facebook and YouTube we were able to increase the social media presence on our website.

Inclusion of PLHIV speakers and local agencies are crucial to the development, implementation, evaluation and delivery of major HIV and STI prevention projects. Projects require leadership and vision to encourage the growth of individuals to maximise their achievements. A gentle approach and ownership of the process were crucially important to overcome the speakers' reluctance to develop completely different styles of presentations on the DVD.

PLHIV speakers on global digital media requires passionate and skilled speakers who are knowledgeable and personable to encourage mutual understanding that PLHIV are just like you and I and that contracting HIV could happen to anyone.

Effective PLHIV Speakers are all about building their personal and professional capacity, constantly evaluating their presentations and the implementation of new ideas. This is central to sustained success in utilising digital media with our speakers. It allows our speakers to fight HIV stigma and have a real sense of contribution towards the UNAIDS zero goals, to community development and sexual health education and wellbeing.

Conclusion

The DVD has had an enduring impact beyond what I expected. 600 DVDs have been distributed in Australia and overseas. Numerous municipal libraries, Universities, the Victorian State library and Canberra's National library all have copies. Every school we have spoken to over the last three years have copies. Victorian AIDS Council's counselling team use the DVD in their sessions with newly diagnosed people. It was also distributed at the International AIDS Conference in Vienna in 2010, and has been used to help train other PLHIV speakers in Australia and overseas.

Without the speakers who featured on the Changing Voices DVD, this project would simply not be possible. I have the privilege of going to work every day being inspired by the contribution of an amazing group of speakers; I know they will continue to challenge me to come up with new ideas as digital media continues to evolve.

To change people's thinking about HIV you have to have the voices of HIV Positive people. The Changing voices DVD was all about bringing people to together to challenge attitudes towards PLHIV.

At the start of this article I said I wanted to challenge the notion that a DVD is out-dated and to show how DVD content could be easily adapted for multiple digital media platforms. By thinking about the Changing Voices DVD and how we have used its digital format to engage global audiences via the internet, I hope I have changed your mind about this assumption.


This article is based on a presentation delivered at the AFAO National Gay Men's HIV Health Promotion Conference, held May 2012 in Sydney.

Max Niggl is Positive Speakers Bureau Coordinator at People Living with HIV/AIDS (PLWHA) Victoria.

Contact PLWHA Victoria to order a free copy of the Changing Voices DVD.
Endnotes
1. We seek permission from speakers each time we publish content onto a new media platform, because each media platform will be reaching another audience.











 


This page was published on 19 June, 2012

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