„my life isn‘t about survival anymore. it is about: living“

Good morning!

Dear all!

I have the very great honour to welcome you here to the LIVING-pre-conference on behalf of the German Community.

I am very looking forward to this. It‘s always like coming home, being in a room full of people living with HIV and community. Thank you for coming!

(I wasn’t going to say this, but because of this IT problem yesterday a lot of people got stuck and couldn’t arrive yet. There’s a saying in my family: The only time we wanted to do something, this is happening. It’s so typical! But I would say: No. It isn’t. It is what it is and we have to deal with it. So let’s hope those who are still on their journey, will come soon.)

This is my second coming home. As soon as I arrive from Berlin and hear the Bavarian dialect, it feels familiar.

I grew up in a village not far away. About 300 people live there. Only 2 of them know of my HIV status. (Or at least: I know they know because I told them …) 23 years ago. Half of my life! My mum and my (older) sister. Most of them don’t know what I do for a living. Some of them think I work in an office. Which is true. But is it the truth?

I work for Deutsche Aidshilfe, the umbrella organisation of community based HIV/STI services in Germany and host of Aids Action Europe. As an NGO we provide health information and advocate for the interests of people living with and most affected by HIV. I am one of this diverse and queer and coloured crowd that joins in one goal: to improve the quality of life for people, who face barriers in all kind of living situations, who have to deal with structural discrimination, who often are afraid of prosecution. Just because of their status, their background or their choice of life.

Sometimes, when I visit my family, I think about talking more about myself and our work. We’ve achieved so much in some areas that it should be easy to disclose myself and say: Hey! Look what we’ve accomplished! My medication is working. Above all: It’s available. Accessible. Affordable. And acceptable. I’ve been taking some of these pills more than 20 years! I should appreciate it and be grateful. My life is no longer about survival. It is about: Living.

Perhaps: I don’t have to talk about it anymore. For example: I no longer live in this village. I don’t have to face them. I can hide. I can live in my safe Berlin Aidshilfe Bubble, pretty privileged.

Am I allowed to be tired of talking and disclosing? This is chronic desease. Faced with the same issues year by year. Disclose. Explain. Educate. And probably defend and work on anti-discrimination. Do I have to talk again and again about the same stuff? I sure shouldn’t have to! We’ve been so successful in regulating this virus in our bodies. U = U. But still: this undetectable virus seems to rule our lives. Our thoughts. And decisions.

“Should I go to this doctor or not? Do I tell ‘it’ the staff? Is this discrimination – or just routine?” What if? What if they say something or do something like putting this unbearable stigma-sticker on my file: that red dot “infectious”?! Again?! Last year’s European stigma report showed no progress compared to the last 20 years. Really?!

There are so many things we still need to work on. My worries about to which doctor I could go to are privileged compared to those who don’t have access to healthcare because they don’t have insurance. In this country, people still have to worry about what happens when they are confronted with medical staff that don’t accept their lifestyle or welcome different backgrounds. This is affecting health, especially when people depend on medical staff for treatment or tests like Hepatitis B, that still can’t be done by our community based testing center staff.

So – as you know: There is no chance to be tired. I had so many different phases in my life: Hiding. Disclosing. Going public. Sometimes I feel like hiding again. Also: privilege: I often can decide if I want to talk about HIV or not. Sometimes I just sit down and rest. We also have to recharge our resources. Till it is time to stand up again.

There has so much more to change. How can we reach those 95-95-95-targets if we are too afraid to turn up at a clinic and claim our so-called human right? We have to talk. About discrimination and criminalisation. About punitive legislation and therefore about: political will. There are too many countries, especially in Eastern Europe and Central Asia, where the epidemic is growing. We have to talk about access to treatment. Furthermore: treatment options! Living with HIV is not the problem. Dying because of Aids is.

If there ever will be a cure – we even have more to talk about. Because no medical cure will heal these barriers this infection comes with. This inequality that we face because of our intersectional backgrounds.

So let’s talk. Let’s share. And let’s have fun! Join together, inspire and let yourself be inspired by all this positive power here in these days ahead. Let’s gather all our resilience and strength to continue building an accepting and welcoming environment. So that those who come next do not have the same issues and traumas, the same shame and stigma to overcome, but can live their lives with all their responsibilities as they were just challenges like many others.

After this conference, I’ll visit my family, in fact: we have a classmate reunion, no joke! I still don’t know, if I’ll join them or – if (!), what I’ll tell them. Sometimes I get tired of my own story. Bu looking at it now, at a two decades distance, and being part of this big international conference in my home town for a whole week: my story is pretty simple: I once had contact with a virus. And it turned out to be a permanent one. That’s it. So what? Move on! Go on living!

Thank you! Have a good time and a lot of energizing experiences!

(Special thanks to my colleagues from Deutsche Aidshilfe: I would’nt here be without you. Thank you!)

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PS: Yes, I‘ve been to the 30-year-reunion of the class 10a 1993/1994 of the Realschule for girls in Neumarkt in der Oberpfalz. And I decided to „only“ talk about my Aidshilfe-work (that eveving). But one or two of them have already discovered my „living positive“-page. Let’s see if there’s a chance to build on next time