I first got involved in HIV charity work in 1999 because I wanted to dispel the ignorance that had resulted in the deaths of so many that I loved. I wanted to give people the knowledge and the skills to empower them in their sexual choices.
I wanted to challenge the stigmatisation of a virus, that chiefly affected those who were already marginalised by society, including gay and bisexual men, migrants, drug-users and trans women. I wanted to challenge those who told me that I was diseased, unclean and a threat to others because I was living with HIV.
Considering my goal was to share knowledge it made sense that I would attempt to harness the power of social media. Social media provides me with a popular platform to reach beyond any core audience and deliver these messages.
Here’s how I use social media to inform and educate about HIV:
If there’s a news story that’s connected to something that concerns you, it’s a great opportunity to get your message out, to signpost your resources, promote your organisation or support your fundraising efforts.
Even if you’ve just responded off the bat to a news story, you can provide links to your own content in follow-up tweets. If you can’t say what you need to say in a single tweet, it’s ok to say it in a few.
Add something to the story
If you add something to the story, whether that’s an image, a personal perspective or a feeble attempt at humour, you’ll get a lot more engagement. Twitter will respond better to something that has personality. Think about what makes your standpoint distinctive. You don’t have to go deep into personal revelation to express something in a way that’s distinctive to you.
Stand up for what you believe in
An authentic voice is going to be more interesting than one that is always bland but on message. Be bold. And have fun with it.
If you do find yourself in the heart of a twitter storm, see if you can turn that into an opportunity to educate.
A lesson I’ve learned working for charities is not to tell people what it is that you do but tell them why it is that you do it. Twitter is ideal for this. They used to say that you should be able to pitch your charity in the time it took to ride an elevator. Now you should be able to explain what it is that you do in a tweet.
Raise the tone, not the volume
Twitter can be hostile and it can be angry. Being a naturally feisty person, I struggle not to fight back if I’m attacked. As a gay man who is open about living with HIV, I’ve enjoyed my share of online abuse, although any hostility I’ve encountered is nothing compared to the misogyny, racism and transphobia that others face.
If we are to make Twitter a better platform, I would urge colleagues to try not to rise to the bait of a deliberately provocative tweet with an equally charged response. Be reasonable, provide information and links to trusted information resources. Back up what you say. Don’t be afraid to debate or defend. Attack an argument but try not to attack an individual.
Make it personal – if you want to
I was diagnosed with HIV in 1998. I reckoned then that I would live until I was about 50. When I approached this age, I wanted to celebrate my survival. I had been living with the virus for almost 20 years and I was still healthy. This was a golden opportunity to counter the images of early death that are still so associated with HIV.
I sent a tweet, thanking people who had wished me a happy birthday via Twitter. And I made reference to the fact that I had reached my goal of 50 and felt good about it.
I wanted people to know the good news about the effectiveness of HIV treatment.
Hundreds of thousands of people saw this tweet, thousands engaged with it. One gay website wrote a story about it, and that news report itself got shared over 1,700 times on social media. It was a lot of impact for something that cost nothing and took hardly any time to do.
Social media is a powerful weapon
The more involved I’ve got into using social media as a platform for my work, the more conscious I am of its harms. Not just potentially to society or to democracy, but also its impact on the mental and emotional health of some of its users.
Twitter appeals to the narcissist. Am I popular? Am I smart, am I funny, am I good-looking enough? If you find yourself judging your worth on the number of retweets you get, you’re in trouble. Twitter is something I use to support and enhance my work. It isn’t my work.
Twitter and other social media platforms don’t always create an environment for better understanding between people. Media can be manipulated, platforms can be used to promulgate hatred or distort the truth. Its power to abuse, and the abuse of its power, should give us all pause.
But Pandora’s box is open. Social media, like the printing press or the internet have changed the way we communicate. If we are interested in communication we cannot afford to turn our backs on it.
Twitter has allowed me to signpost some of the biggest developments in our understanding and treatment of HIV. It has given me a platform to share accurate information, such as NAM’s resources. It enables me to explain why I am so passionate about this work and to raise awareness of issues that I’m passionate about, or information that deserves to be widely known, such as #UequalsU. I use Twitter to call out homophobia when I see it (knowing that racism, homophobia and transphobia all facilitate the spread of HIV) or to give my vocal support to trans people and to migrants.
It was combination treatment that managed to disable the virus enough so that HIV became a liveable condition. It was a combination approach to prevention that finally delivered a decline in HIV diagnoses.
Similarly, I believe that charities, and those of us who are passionate about the causes that we work on, need a combination approach to our communications that takes full advantage of the accessibility, shareability and engagement opportunities of social media. This is an approach that amplifies our voice, our impact and our ability to deliver social good.
We can make social media a force for good by using it as a force for good. Use the power of social media responsibly.
Matthew Hodson is Executive Director of NAM aidsmap and the recent winner of Social CEO of the year. Follow him on Twitter at @Matthew_Hodson. NAM provides HIV news and treatment information to support people living with HIV, throughout the UK and internationally, to live longer and healthier lives.