In this blogpost series, we ask our participants to reflect on why certain days have special meaning for them personally and why it is important to celebrate these days in different ways.
Our participant Nana has been thinking about World AIDS Day and shares with us her personal thoughts on how to best be an ally for those affected by HIV/AIDS. In her text, she invites us not to forget that despite the gravity of the issue, it is first and foremost about people, individuals, with their own personal stories, challenges and struggles.
Introduced in 1988 by the predecessor of UNAIDS, World AIDS Day was meant to raise awareness for the world-wide AIDS pandemic which has been costing millions of lives over the last decades. Furthermore, it was introduced to mournand commemorate all those who had already lost their lives due to contracting the immunodeficiency virus.
In practice, these two worthwhile objectives seem to exist in an unhappy marriage or to sometimes contradict one another outright. In my opinion, that has to do with the tendency of dominant society, public health organisations, and media outlets to use the wide publicity of World AIDS Day to strongly focus on questions of health education, prevention and safer sex practices. I do not mean to say that these topics do not matter, they certainly do. However, HIV/AIDS is not even primarily, let alone exclusively, a medical issue but a political one. Considering that there always seems to be limited attention and space for the concerns of marginalised groups, one should critically assess who gets to speak about what and to whom in the framework ‘granted’ by hegemonic discourse to a debate as complex and important as the politics of HIV/AIDS.
A symbolic expression of that existing tension between different agendas is the fact that every 1st December I encounter people in pedestrian zones of German cities who are wearing red ribbons (the sign dedicated to showing solidarity with people suffering from HIV/AIDS) and hand me free condoms. This seemingly friendly and innocent gesture makes me feel uncomfortable. How can one claim to stand in full solidarity with people notably suffering from the societal stigmatisation which comes along with having HIV/AIDS whilst simultaneously (at least implicitly) spreading the message that all people who are not affected by the virus (yet) should do everything in their power to avoid an infection?
HIV/AIDS taught me my first lesson about allyship long before I knew that term, let alone grappled with the concept behind it. Having a parent whose everyday life was shaped by the experience of discrimination, I learnt about AIDS as an infection which – unlike other conditions – would not create much sympathy in people but rather evoke fear, judgment and disgust. Since my parent was concerned about me being discriminated against on their behalf, I was often warned against revealing my own knowledge of HIV/AIDS. Nevertheless, I tried to ‘childsplain’ to my environment why the way they thought and talked about HIV/AIDS was wrong. I was mostly concerned with correcting misconceptions about the transmission of the human immunodeficiency virus but also tried – in my childish ways – to explain why it was people who were affected by HIV/AIDS and not ‘just’ ‘gays’ or ‘junkies’ or ‘Black African populations’. Unfortunately, many of the stereotypes persist to this day. (I am still engaged in talks with sexually active acquaintances whose major fear considering sexual encounters with strangers consists in ‘catching’ HIV regardless of their respective gender, sexual orientation, sexual practices or other objective factors increasing their personal risk etc. [people are often significantly less worried about ‘catching’ chlamydia, hepatitis or herpes etc.]).
There are many other and even bigger issues: lacking or insufficient access to antiretroviral medication, (reproductive) healthcare, and support systems, above all in countries of the Global South. Discrimination, queerphobia, racism, stigma and hate crimes. Feelings of grief and loss, depression and survivor guilt. Lack of visibility and representation. Increased anxiety and vulnerability, especially in light of the ongoing COVID-19 and other pandemics. This list is not exhaustive at all.
So what remains which would be worth celebrating? A lot.
First and foremost, we should celebrate all the activists/people with HIV/AIDS who have been struggling for decades to change their/our communities and lives for the better. They have not only been engaging in worldwide protests against reactionary, oppressive, or at least uncooperative governments or pharmaceutical companies and engaged in awareness raising activities and fundraising, they have also been establishing alternative systems to provide support for people who are in need of care or who are going through phases of grief etc. They have been struggling with and resisting discrimination and exclusion in more and less visible ways.
On 1st of December, we should of course mourn all the people who lost their lives due to HIV/AIDS. But we should also remember and celebrate their lives, their deeds, their ideas, their histories, and struggles. And we should listen to all the people who are still here, trying to create a society which is founded less on discriminatory practices but more on an ethics of care and solidarity.
I am still grappling with the concept of acting as an ally to people with HIV/AIDS.
Nevertheless, here are some ideas on what to do on World AIDS Day (or any other day for that matter):
˝Some wise person once wrote “The whole entire world is a very narrow bridge and the main thing is to have no fear at all.” I feel that thanks to DialoguePerspectives the world is becoming a network of interconnected bridges that we are building between each other together. Beautiful bridges thanks to which we can try to create a world together, a world free from prejudices and fear.
Anna, DialoguePerspectives participant