Tag: HIV community

Equalize!

hivstigmafighter

My lovely people, a lot of good things have happened these past days in Gihanga!

To celebrate World Aids Day 2022, Inyambo Stars together with RBP+ (an association of People living with HIV) organized the “Stop HIV stigma show” in the commune of Gihanga on the 3rd of December. I was very privileged to support them to organise this show for the third time.

During the opening speech I pointed out that it is very sad to see people still dying because of AIDS in 2022. And how shocking it is to hear children are still born with HIV, or of people who stop their medication because they heard they are Undetectable. This shows the need for all these talents to keep up their support to empower communities in Gihanga, Bubanza and all of Burundi on key health messages around HIV and AIDS. 

The show was all about using our community’s talents to empower people living with or affected by HIV and AIDS to learn about and build their capacity to fight HIV & AIDS and address HIV stigma. Combining various talents and arts forms is a great way to bring HIV education, and I am glad the Inyambo Stars share this passion with me. Share our talent and break HIV stigma! 

So, we brought together different talents: The fashionistas of Inyambo stars, the Indigenous Batwa Cultural group Ubumwe from Gahwazi, musical youth of Inyambo Voices, the supertalented artist Didy Love, and many more. Together we created a fantastic day for the community of Gihanga to remember. In all the performances key messages around HIV/AIDS came back like “fight HIV and AIDS but don’t stigmatize people living with HIV”, “Do HIV testing” and “Take medication every day”. 

Here is an impression of the day:

Getting ready for the show!
Opening the “Stop HIV stigma show”
Opening the show through traditional Burundian dance by the Batwa Cultural group Ubumwe
The fashionistas from club Inyambo Stars want to contribute to empowering young people to change the narrative on HIV and AIDS by normalizing the disease. Their wish is to organise more campaigns using fashion as an arts form to bring health messages beyond Gihanga, across Burundi. 
Gihanga music artist Didy Love, proud member of Inyambo stars, did an energetic performance while also sharing key HIV messages
Inyambo voices shared their recently released song on fighting HIV stigma

Our common goal as artists was to make sure that as many as possible young people would be able to engage with us on this day. I believe that can one day they can become our hivstigmafighters, that they will be listened to by other youth and will help to build a new generation that is open minded and better informed about HIV and AIDS. This is a how we equalize the system. 

I would like to thank the Administrator of Gihanga commune who gave us the permission for this great day and sent his first adviser to join us on. It is great to see them engage in our community and see what Inyambo Stars and other talents are able to show and give back to their community. I was also pleased by the presence of RBP+ and how they appreciated the support given by the Youth in Gihanga. Finally thanks to the DJs MC Chadou and MC Jerome, and Zoe Brand designers. Together we showed that one day we will win this battle! 

Partners of the “Stop HIV stigma show”

So this was the third “Stop HIV stigma show” in Gihanga community and I hope there are more to come. I am really excited to continue my support to Inyambo Stars and others to organise their next event. If you want to support them please do, they will be very grateful to continue developing and sharing their talents to break HIV stigma! 

Together we can! 

Peace,  

Eliane. 

Unity

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Each year during the first weekend of September the Airborne March, commemorating the 1944 battle of Arnhem, is organised in Oosterbeek. I did this beautiful walk for the first time in 2019, just before the corona pandemic. This year, my wish to walk once again with my neighbour and friend, Wanda and Norma, was finally granted. It was a very hot day but we managed to get to the finish. 

What really inspired me was the diversity of people during this march! Young and old people, mothers with children in strollers, people with a disability… I asked a woman of respectable age with a stroller “How many kilometers are you walking?” and she replied with determination “10 kilometers!”. I was very proud of her. I also asked a young girl how many times she joined the march and she said  that it was her 6th time already. So I asked how she did this, and she said that since she was baby, her grandparents carried her with them and that this was the first time she could walk the march all by herself! 

Overall the event is real fun, even people encouraging us along the street were very engaged. Some offered us, complete strangers, to use their toilet in their home, provided water to people and pets (yes, in the Netherlands people are dog lovers), offered fruits, sweets, and biscuits. I read a lot of appreciation of what we were doing. 

I concluded that it does not matter where you come from, you can participate no matter what you look like or in which shape you are. This day is really all inclusive and helps to unite people, both participants and spectators. Together we inspire each other to both continue to remember and learn from the past, yet also shape the outlines of an inclusive future. 

That day I learned that remembering the past does not mean only focusing on the negativity, it is also an opportunity to educate the younger generation and encourage them and apply the learning to keep making a positive impact in our communities. 

So, what if we also strive for more diversity and inclusion in our HIV community, where we still face so many issues around HIV prevention and stigma and discrimination? Where we are still struggling to reach vulnerable people that are marginalised? Let us learn from events such as the Airborne March how we in the HIV community can unite people living with HIV, onlookers, and care givers to fight HIV stigma! 

For the Airborne March I can now proudly add a wing to my medal. A win-win situation since it helps me to maintain my healthy new me lifestyle and it inspires me to keep fighting together for a stigma free world. 

Peace , 

Eliane 

Share talent, break HIV stigma 

Share talent, break HIV stigma 

hivstigmafighter

I was honoured to be selected by IAS to participate at the 24th International AIDS Conference. AIDS2022 took in place in Montreal between 27 July and 2 August.

Let me first of all state that everyone, including me, was so disappointed that so many participants where denied visa by the Canadian Government. I was looking forwards to meet Delegates from Burundi and other parts of Africa, butso many did not make it in the end. If Governments continue to exclude delegates from countries where the pandemic hits hardest, how will we end HIV in 2030?

Now on to my time at AIDS2022. I kicked off strong right away! On the 27th of July I was a speaker on the 9th International Indigenous Pre-conference on HIV and AIDS. I was humbled to share the experiences of the indigenous (Batwa) community of Burundi. To me it is clear – all over the World indigenous people are still facing inequalities, leading to relatively higher numbers of indigenous people affected by HIV and AIDS whilst also facing reduced access to HIV education and care givers. We cannot end HIV and AIDS when we leave indigenous people behind!

Panel member of the Indigenous pre-conference

There is still much so much to do around education, awareness raising, access to health campaigns for the indigenous community. This is true at least for my home country Burundi, hence also my commitment to breaking this trend. This event gave me refreshing insights into working with indigenous people to address HIV/ AIDS and other pandemics, and planted the seeds for new  partnerships in Burundi and elsewhere.

Together with Karl Schmid from +life at the U=U Summit

My second major activity was to participate in the U=U Summit on the 28th of July where I was able to meet many of my fellow activists after so many years only communicating online. Did you know that there are still a lot of countries that are not endorsing U=U? This despite knowing that U=U is an immediate and effective response to destroy HIV Stigma  which is still a public health emergency. Again we have to keep on investing in finding the right ways to break HIV stigma!

Ready for action! The Stories of Hope stand at the Global Village

Which brings me to Stories of Hope! The main reason to be on this conference was to share my project through a 3-days exhibition at the Global Village from 29 July to 2 August . As many of you already know, Stories of hope is an initiative where  people living with HIV share their talents to break HIV stigma. The launch of Stories of Hope in 2021 was supported by EATG, and the exhibition was proudly supported by HIV vereniging through sponsoring of beautiful materials and hand-outs. Organising an exhibitions at the Global village, allowing me to meet so many activists, artists and conference participants gave me a such positive energy! I am so proud that Stories of hope has reached so many global delegates and that Stories of Hope unites us in breaking HIV stigma  by sharing our talent. 

Interacting with global delegates during the 3 days exhibition

There were so many amazing side events to still do around the conference. Just to highlight a few: I participated at the famous AIDS Conference party called “No pants, no Problem” where I performed  as  Eric the Drag King and performed a dance called “Flush out HIV stigma”. We actually managed to raise 12,000 Canadian Dollars during the event in support of HIV+ women. Eric the Drag King is another me you did not know about, right? Again another great way to share my talent to break HIV stigma. 

Eric the Drag King at No pants, no problem

I am very thankful to be part of AIDS2022. I want to extend a personal thank you to the Heroes of Hope who shared their stories during the conference; Adam, Matthew, Gloria and Faustine. And I know there are still more Stories of Hope to come from other people I met at AIDS2022. Keep an eye on Stories of Hope for more interviews and portraits!

Share talent, break HIV stigma!

Peace, 

Eliane  

Ambassador of Hope

Ambassador of Hope

hivstigmafighter

Today we are celebrating one year Stories of Hope! And we have achieved so much since our official launch on 18 July 2021, Mandela Day. Early last year, we started Stories of Hope with two Heroes, and since then our community has grown to eleven Heroes already!

You may remember that last year we highlighted the important role that Nelson Mandela fulfilled throughout his life for vulnerable people facing stigma of any kind.

Today, on Nelson’s birthday, we are proud to share a touching interview with our friend Adam Castillejo, and a true Ambassador of Hope for the global HIV community. We do hope that Adam will also be an inspiration to all of us!

Meanwhile we are very busy preparing for AIDS2022 as next week around this time we will be travelling to Montreal. We are so excited to connect to fellow activists, role models, and so many more inspiring people.

We also set ourselves a target, namely to capture and share at least one new Story of Hope on each conference day! To make this happen, we really need YOU!

So reach out to us and visit the Stories of Hope booth GVE013 at AIDS2022!

FIVE ways to THRIVE

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This month I had the opportunity to participate in the ‘Stories from HIV Long-Term Thrivers’ forum where I gave a spoken word performance alongside an amazing and inspiring panel. The forum was organized by ViiV healthcare.

How did I give this spoken word performance? I decided to share my 5 ways to thrive! Even today, to many people HIV is still seen as a disease to be ashamed of, they consider it as a big challenge while actually you can live a perfectly happy and healthy life. Here are my 5 ways to thrive for those who missed my performance:

Trust (again)

In 2003, when a doctor told me to buy my coffin when I was diagnosed with HIV and sent me away desperate, without a prescription, I spent  a few hours thinking only about my death. I lost all confidence to live. Instead of looking for help, I started preparing my funeral. Hope started glowing when my husband brought me to another hospital for sound advice and to get my HIV treatment started. When I held my first pills in my hand, I rejoiced in taking them because I firmly believed they were going to save my life. Only after regaining trust in myself, I was able to work on my next step…

Move (my body)

My new reality made me even more aware of the importance to keep myself in shape and healthy. But what what get me going? In 2003, I wore a beautiful sky blue wedding dress and I set myself as a goal to wear it again at my 20th wedding anniversary next year. So, I decided to walk at least 10 km every day to keep me in shape and make sure for me wedding dress to fit me again. Another really important driver was for me to reduce the number of pills I am taking as I also need to take care of my diabetes. So as a huge added benefit of my daily walks I was also able to reduce 4 pills. And my weight? Well, I lost 8 kg so far, just a tiny bit to go. I like my healthy new me!

Share (my emotions)

You all know by now that I came out of the closet with a big bang! As a campaign poster girl, with my message posted all over Amsterdam. After staying with my secret for more than 10 years, sharing my story with the world was a huge relief for me and made me even stronger and more courageous. It was also a great motivator to help more people in the HIV community, for example by peer counselling and support people living with HIV on emotional well being. It also motivated me to learn ever more about HIV, related stigma and existing inequalities in the world. Last but not least, I also launched an initiative called Stories of Hope to show the diversity and talents of the HIV community worldwide.

Perform (my arts)

My greatest passion has always been to be on the stage. Since very early on in my life, I liked entertaining people. And I do so in many different ways, as a poet, through traditional Burundian dance or playing my indonongo… While I am lucky to consider my passion as my job, my key message to all of you is to work out routines, find hobbies or simply try to enjoy your job and all other great things in life. Creating and maintaining a diverse lifestyle is probably really my biggest secret to staying healthy. So, despite having gone through so much in my life, I am confidently looking forward to growing old.

Dream (my desires)

Unfortunately, in Africa people living with HIV/ AIDS are still dying. My nephew Kevin lost both his parents because of AIDS within 8 days in the year 2015. During the forum I shared my wish for a world where children like Kevin will not lose their parents anymore, where they can access health services so they can get tested and treated, and where they can grow old in good health. And right now, for Kevin I wish he can be supported to grow up in a community where he will not be stigmatised.

Yes it is possible to thrive whilst living with HIV. I, and many others in the HIV community, am an example of that. I am always proud to share my little secrets to growing old while enjoying my life with HIV! 

A bouquet of problems

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My birthday month, November, had a great start by doing what I like most, giving my HIV activism a boost. Between 4-7 November I was in Istanbul for a face-to-face ‘Skills Training to Empower Patients’ (STEP-UP) and networking weekend organized by the European AIDS Treatment Group (EATG) Training Academy.

After more than a year of online training because of Covid 19, I got a chance to finally meet my fellow European and Asian HIV activists and advocates. Everyone was dying to meet and finally get to know each other more and share our experiences because in the end it is really about community voices. It was quite interesting to experience the difference between zoom meetings and ‘real’ talks together.

As we all came from different parts of Europe and Central Asia we had to speak different languages, so some were speaking English and others Russian. But in the end we all share the same goal and then language barriers can be overcome. While chatting with different people and listening to presentations, I realized that we all share what I call a “Bouquet of problems”;  Stigma, discrimination and criminalization.

During the weekend I learnt so many new insights. For example, my friends from Greece and Georgia shared with us that among people using drugs, women are way more stigmatised than men. Or that in some countries mothers living with HIV are still criminalised when breastfeeding and that they are not receiving any support from the health system to obtain baby formula or do medical checks during their breastfeeding period. 

Yet, all the new information led me to ask so many questions. For example, why are especially women still so vulnerable to attack and deliberate stigmatision? There are so many new developments and guidelines, for example on breastfeeding, there is U=U, etc. In 2021, women living with hiv should not be criminalised at all. I am telling you, no mother would wish to transmit HIV to her child on purpose!  

It shocked me to hear that there are still 130 (!) countries where people living with HIV are injustly criminalised, and in 50 countries we can be prosecuted because they have outdated laws related to sexual, but also on spitting, biting and even breastfeeding. People, after 40 years of HIV/AIDS, instead of being stigmatised we must focus our fight on removing inequalities and to demand the right to access HIV treatment and receive good medical care.

Our training was epic, there was no taboo, we talked about many topics and received useful tools that we can use in our communities. It feels like I have known this group for such a long time as we shared so many laughs, jokes and fun. It made me wonder what more we could have achieved if we could have done all sessions face-to-face instead of via zoom. I gained so many friends, which is fantastic. These moments of togetherness bring back humanity to our lives.

By Sunday, we all went back home empowered with knowledge that we will share with our community and use to convince our decision-makers and politicians to DECRIMINALISE people living with HIV!

Thank you EATG for organising the STEP-UP training and making this such an inspiring weekend, we shall meet again my Activist Friends. Keep up the fight, we are on the winning side since we DARE to speak up about our bouquet of problems!

Peace,

Eliane 

I want the world to know

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In May 2014 I finally told my secret; I published a note called ”The Hidden truth” on facebook to inform everyone about my HIV. I had been thinking about coming out of the closet for many years and that day I was ready to share my reality and prepared to face a storm of reactions.

Before coming out I told a few friends, neighbours and parents of my kid’s friends. Why did I do that? I was creating my small safe haven, in case the world would turn its back on me. So I was assured that these people would hold my hand and support me! 

Back then I was not sure what reaction I would be getting, but in the end I received a lot of supportive responses. Some people called me, others wrote messages calling me a strong and courageous woman, thanking me for sharing, telling me they love me, and reassuring me I would still be the great dancer and remain who I was.

Then Hello Gorgeous, a Magazine for people living with HIV, approached me if I wanted to share my story as a HIV talent. So in the 2014 autumn edition I became a cover girl for that magazine. I decided to use the magazine cover as my facebook profile picture.

This is when the troubles at my kids’ primary school started;  a parent went to tell the director of my HIV. He asked me to remove the picture, he said ”You scare the parents!”. I told him that if parents have questions, they are welcome to ask me. I added that I could change my facebook profile picture but that the truth would still be out there, in the magazine and online!

That’s when I handed him a copy of the magazine. He looked inside and saw me posing with my Indonongo and said ”You look happy and strong!” I said “That’s exactly my point! Have you ever seen me unhappy? I came to this school with HIV but I did not tell you. There are other parents with secrets as well. I am out of the closet and please don’t tell me to hide again!”

But some parents did not give up yet! A few days later a teacher told me “Mrs Becks, I am sorry to tell you that parents are very worried that your son is going to infect the whole classroom”. I was furious and asked “ Are you seriously thinking that my son is going to infect your classroom including yourself?”

To my surprise he answered that he was afraid that was going to happen. So I told him that first of all he does not have HIV and secondly even if he would have it, how is he going to transmit it to you and the other kids? Is he going to have sex with you all, is he going to breastfeed you or is he going to inject drugs and share a needle with you? By now he was begging me not to be angry, and said he needed to ask this so he could answer those parents.

I was like, well you got your answer. But since it is HIV you are trying to push me and my children down. I will NOT allow it! Tell those parents, whoever has a question, to come to me and we will talk. Shame on you as teacher, not making an effort to look for basic information on HIV. And you are hiding behind the parents while you are afraid yourself.

You all thought this would be the end of it, right? Well, things just got started… Very soon after this, teachers started reporting to us that one kid was suicidal and the other was uncontrollable and was continuously hitting other children. So all of a sudden they had mental issues? But as the school already reported this to the social care system, we were now labeled a dysfunctional family thanks to this school. This unleashed an army of social care ‘specialists’ towards us. I can tell you, there is no way to keep them out of your door and you are guilty until proven innocent!

So, we went through a very stressful period of observations by psychologists, dozens of talks with social caregivers, and hundreds of forms/ tests to fill in. All this to discover if my husband and I were evil. Guess what? They found nothing! And all we got from the school was a simple apology for the misunderstanding…

I felt really down for suddenly being treated as a bad mother, whilst I have always been so active for the school helping them out with many activities including making music. The moment I came out, all went down the drain! That period in 2014 I had to stand tall and fight tooth and nail against this bigotry. But I showed them that no matter what kind of box they tried to force me into, I did not fit!

My secret was out, and nothing was going to stop me now! Luckily my safe haven did its work. Of course, some parents were fully understanding and to date my kids are friends with many of their children.

It is not easy to fight stigma and discrimination, and when it comes to my children I will do anything to protect them. In the end the drama caused by school and the army of caregivers stopped and we walked free after our long fight!

I am glad I came out and I did not regret my decision!

Peace,

Eliane

U=U life coach

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My dear lovely people living with HIV, I am not sure if we all know what U=U means. If not, I am always glad to explain it once again as it is really important to know U=U and how it can help to break the HIV stigma.

If you have an undetectable viral load, it means that you cannot transmit HIV sexually. I believe this information should be known widely as I have come to realize that there are still people out there that lack this information. So, to highlight the impact of U=U I will share two stories of young couples where U=U saved their relationship.

My first story happened in October last year, when I got in touch with a HIV+ American woman with undetectable viral load who follows my HIV stigmafighter facebook page. She fell in love with an African migrant from Senegal and I just finished to share a post about the U=U campaign in French. Immediately she contacted me via messenger and asked me if I could talk to her boyfriend about U=U.

“I can give you truth, information and respect, but I cannot transmit HIV “

I explained U=U to him through this picture in French. He told me that they already had intercourse and that some time after that she told him about her HIV status. At the time he panicked, thinking it would be the end of the world, especially since he recently was tested HIV negative before donating blood. I was quick to comfort him and inform that she could not pass it on to him because she is Undetectable. I recommended him to go back for another test to discover the truth.

A few days later he got in touch with me again and he was very happy and thanked me for guiding him in the whole process. He send me a small message saying “Hello Madam , I want to thank you for your help. I did HIV test and I am negative. I believe now in U=U”. He confirmed that he will keep on loving her and is planning to start a family with her. I now heard from them and learned that soon they are going to get married! What a happy ending!

My second story is about a young African migrant woman living in the Netherlands. I used to be her HIV peer counsellor and during one of our sessions she explained her worries about having children. She was madly in love but she did not want to disclose her status. First of all, I checked if she already knew something about U=U and she told me that she heard about it but did not understand it since she always communicated with health professionals through an interpreter who does not have knowledge on HIV terminologies. So, I explained clearly to her in French what U=U means since this is her preferred language to communicate. I told her that if she really wants to have a baby with her boyfriend, she will have to tell him to make him understand what it means to be undetectable. 

I also stressed to her to use the fact of being undetectable for her own benefit, and that she should ask him to find out about his status as well before sexual intercourse. The reason for this is because if it then so happens that he is HIV+, they will not later on argue about his status. Being open about status and being undetectable will really help him understand that there will not be any danger for him.

After our chat, she went home convinced to be open about it. On the same evening when he approached her romantically she decided to tell him. He accepted her advice and they went to see a doctor together where he also learned more about how he can support her. He also got in touch with me to hear more  about my and other experiences, which made him really excited to start a family with his girlfriend. Two months later she became pregnant and now they have a son that was born HIV negative.

Long live U=U, it saves relationship and helps to break the stigma!

Peace, Eliane

HIV 2020 Conference

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Hello Community Reclaiming The Response,

Yesterday the online HIV 2020 conference officially started. The past few weeks I have been working really hard with a dedicated group of people on my art performance which went live online today. As you know, I was invited to show this in Mexico, but as it was not possible to travel there, yet my art project was selected for an online exhibition instead.

I am so proud of the 7 minutes film called “A HIV Journey – A Story of Hope“. In this film you will see me perform my beautiful poem “It’s my time to fight stigma”. I hope you will enjoy it!

Peace,

Eliane