The internet is an amazing thing, probably the most amazing invention in living memory, and certainly of my generation. The world became that bit smaller following the invention of the steam engine, and today we’re fast approaching the dawn of a global village thanks to the internet. And this really is only the beginning, you would be a fool to believe there isn’t so, so much more to come.
But as the globe shrinks, cultures, traditions and philosophies inevitably collide. There’s not always going to be a single agreement, not everyone has the same opinions and some people will perceive other’s beliefs as primitive or undeveloped and in reverse their own beliefs may be viewed to be blasphemous or profane. As in the past the laying of the railways across the continents led to (what might be conceived as foreseeable) disagreements, rows and fighting much good also came of it. What’s important is a respect for one another and to educate communities in tolerance, open-mindedness and the importance of free speech.
And, I don’t think we should apologise that we’re still trying to find our feet with this, it’s very easy to grow up in a cocoon, surrounded by people who adhere to the same system of values as we do. Or if not, we find an easy means to avoid confrontation.
Whilst we need time as a society to grow to learn how to communicate is this close, confined, yet extremely large community that the internet has delivered, common courtesy and tolerance of one another should not be thrown out the window.
UNAIDS estimated in 2011 there were 34 million people living with HIV globally. Broken down per region the percentage breakdown looks something like this:
If the chart above was a Cherry Bakewell the UK would barely represent the crust of the Western and Central Europe slice. In terms of the global population of people living with HIV, we’re less than 0.5%, we’re not even the cherry on the top.
So I failed to comprehend this week why Facebook’s “HIV UK support group” decided to start taking such a staunch allegiance to their title. I can understand why people would set up regional and country specific groups, there can be barriers to global clubs, language and culture being just two of the most common that spring to mind. But to deliberately and systematically exclude people seems entirely pointless to me.
Firstly, many people from other areas soon realise the group isn’t always of use to them, it’s discussing local issues, conversations about UK policy, or HIV in the UK media etc. Secondly and more importantly there is so much more to gain by allowing a diverse mix of members. Look at how small a proportion of the global HIV community the UK represents. Surely we can’t not afford to open dialogue with people living with the virus elsewhere across the globe?
There are political, social and cultural differences, for example I have much easier access to medication than many people in other parts of the world, but there are too many similarities for us to ignore. The stigma we all face, the ignorance of people around us and the fear that has spread to all the ends of the Earth at a greater rate around the world than the actual virus itself.
If this decision hadn’t riled me enough this week I was set for another ‘head-desk’ moment this morning when I was reading another Facebook group I belong to “The friendly group for people living with HIV and friends”.
Apparently posts about religion were becoming “irritating” so the subject is now off limits.
I’ll put aside my views on what I believe many people perceive as religion and what is in fact deranged psychopaths creating their own ideology by manipulating religious texts or teachings for another day. But faith is important to many people, particularly in the developing world, which we have seen account for the far larger share of those living with HIV.
Expressing a faith or commitment to religion is only dangerous if it interferes with people’s health and their wellbeing. Statements that God or a deity can cure HIV should be challenged, but we must challenge these statements, not those who have presented them. We need to engage with these people and try to help them understand the facts. And they can learn to love the science that will keep them alive as well as their God. And if they wish to lay blessing on people and wish people well in the name of their religion is there any harm? If you don’t believe in God, aren’t you adult enough to gloss over these posts?
By ostracising such conversations we risk allowing people to become vulnerable and the victims of cons and cheats.
The HIV community has an opportunity to utilise the internet to become stronger, louder and more confident. We can embrace various cultures if we are patient. The fight against the virus will not be won by countries in isolation but from a global effort.
In the same way the pharmaceutical companies, governments and NGOs work globally to fight the advancement of HIV and the consequences of the virus, those living with HIV must increase their efforts to offer support and commitment to each other around the world.
Our brothers and sisters who lost their fight to the virus in the 1980s and early 90s had to shout in the streets to get noticed, to demand change. We can’t take for granted the increased opportunities we have today and how much louder our united voice can be.
I am aware it is no easy task to administer an online forum or group. People dedicate their spare time to ensure that discussions remain friendly, engaging and relevant. Admin deserve a big thank you and a pat on the back for their dedication and hard work. However, I ask the two groups mentioned in this blog to seriously reconsider their actions, or at least open the dialogue up for discussion. Last time I checked “leaders” making decisions for their “populations” without engaging or allowing further discussion on the matter were generally referred to as dictators.
Alternatively if this is not possible perhaps a change of name for the groups should be considered, initial suggestions include “HIV UK(IP) support group” and “The friendly group for people living with HIV and friends… as long as you and your friends don’t talk about religion”.