HIV: Personal Activism (Presentation for THT Activism and Involvement Workshop)
Alex Sparrowhawk: HIV & Me
29, living in Manchester for almost 8 years
Diagnosed HIV+ November 2009 with Viral Load 79,000 and CD4 213
– started meds immediately
Joined the MyHIV Community Forums November 2011
On the 3rd anniversary of my diagnosis I ‘came out’ HIV+ on
Facebook and Twitter
Living well with HIV – UD since early 2010, present CD4 582
What is Activism?
Activism : the policy or action of using vigorous campaigning to bring
about political or social change
Activism isn’t limited to physical actions, such as protest, boycotts or
..it can be creative, utilising art and performance
BUT all forms of activism need to target a specific audience and raise
awareness with those who have the power to bring about change
An Activist is anyone who makes effort to promote, impede or direct
change in social and political environments – are you an activist?
What makes an Activist?
Personal Activism and HIV
PLHIV face a number of issues, from accessing adequate health care to
stigma from society, HIV charities and organisations attempt to tackle
these concerns on a daily basis – so why do we need Personal
To put a ‘human face’ to the story that people can relate to – rather than
talking about statistics
To make a change in our communities, offices, colleges, etc. – we can’t change
the World in a day but we can make a start with those around us
To demonstrate how life with the virus can be normal – People who choose to
be visible prove that HIV isn’t something to be afraid of
Why be a HIV Activist?
“I want HIV to be eradicated. If individuals are empowered to own skills to prevent
HIV, those living with it would live productively and many others would stay
negative.” Dr Tom Muyunga Mukasa (San Francisco, USA)
“I travelled long hours in silence and in the darkest places where I had wanted to
shout "Can someone hear me?" Some how HIV took my pride and the only way to
claim that was to come out of the closet - a place of shame. Living Positively
accepting that I am not HIV but a woman living positively among others. A healthy
beautiful feeling” Sophie Jayawardene (Auckland, New Zealand)
Keeping a blog is a simple way of raising awareness about HIV
Keep it personal, your experiences and opinions - but link to topical subjects that
are interesting to increase your exposure and audience
Write enough to engage with your audience but not too much that they get bored
half way through – blogging weekly/fortnightly is the best way to encourage
Avoid repeating yourself, and don’t say something for the sake of it – it’s much
better to take a break than rehash an old piece
Think outside the box and mix it up - make a video, create a poster or ask a
guest writer to produce something for you
The fantastic thing about Twitter and HIV activism is the ability to
remain anonymous if you feel you need to - it also provides a worldwide
audience and an amazing platform to deliver your message from
Keep up with news and events and promote your blog or activities
Meet people in the same situation and share ideas
Network and find contacts in the media, charities and organisations who can re-
tweet your work and help you to get more exposure
Protest and allow your voice to be heard by utilising hashtags etc.
Speaking with the media is a great way to raise awareness about HIV
Add yourself to HIV charity/ organisation media contact lists
Don’t be disheartened if journalists cancel – editors are renowned for changing
their minds last minute, especially if a ‘juicy’ story falls on their desk
They WILL edit stories, film and interviews – you won’t always get the chance
to review an article before it goes to press, or see a documentary before it hits
TV screens – think carefully before agreeing to anything!
Be prepared – these opportunities often come in last minute but always make
sure you know how you want to tell your story
Your Talents and Activism
Hate social media? Concerned with speaking to a journalist or terrible
at stringing a sentence together?
No worries – think about your own talents, what are you good at?
There’s no rules to Personal Activism but these guidelines will make it
easier to reach your goals when raising awareness about HIV!
Make friends, not enemies – we don’t all have to agree on everything 100% of
the time: avoid badgering people into situations and preaching to them
Value and respect each other – not all activists support all HIV initiatives, this
doesn’t mean we can’t support each other in areas we do agree on
Define yourself by what you are fighting for, not what you aren’t
Set goals and priorities and keep focused, persevere – we’re not going to win
this fight overnight, it’s a long haul
TAKE A BREAK! - battling the virus is tough, being an activist can be tougher!!
Resources and Contact Information
Twitter: @birdy_tweet (Alex: HIV & Me)
Join the HIV Activists Network: HIVactivist@nat.org.uk
MyHIV Community Forums: www.myhiv.org.uk