Tag: Stigmafighter

Inyambo STARS on WAD2021

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On Saturday 4 December 2021, I helped Inyambo STARS to organise a local event to celebrate World AIDS Day. This was a day to show their community why they are true talents, showing their fashion skills AND committed to helping their community, especially supporting vulnerable people living with HIV in Gihanga, Burundi.

Inyambo STARS, RBP+ ( Reseau Burundais des Personnes vivant avec le VIH) with indonongo.org support, organised a total of three activities. And as large gatherings were not allowed due to the COVID-19 pandemic, they really had to show their improvisation skills this time around!

The day started with a great Burundian tradition called Ibikorwa Rusangi, community work. All over the country, every Saturday morning from 8h00 the people of Burundi contribute collectively to keeping our community healthy and promoting good cross-cultural relations. They were joined by their parents, local representatives, shopkeepers and other community members.

Really, there is no way Inyambo STARS can perform their arts without maintaining good relations and giving back to their community. I know this gave them a lot of inspiration to stay connected and work together as one. What a great opportunity to connect the community of Gihanga to fighting HIV stigma in our country.

After Ibikorwa Rusangi, Inyambo STARS, a selection of people living with HIV and partners, marched together through Gihanga in solidarity with people living with HIV and to raise awareness on this year’s World AIDS Day theme: “End AIDS, end inequalities , end pandemics”. Did you know that in Gihanga there are 246 people living with HIV, 84 men and 162 women? Of them 29 are younger than 29 years, of which 8 boys and 21 girls.

Yes, normally Inyambo STARS would now have done a fashion show or catwalk, but I do believe this March together with people living with HIV did really help them to unify with the HIV community.

They closed the day by expressing solidarity and support to vulnerable people living with HIV. The cordinator of RBP+ reinforced the message to the community of the importance of staying on medication and going to the health centre for regular check-ups. She also called upon pregnant women to do a HIV test so they can detect any new HIV cases to prevent neonatal HIV.

Helping Inyanmbo STARS and their partners to support people living with HIV in Gihanga during World AIDS Day, inspires me a lot and gives me so much positive energy to continue making impact in my community of Gihanga and possibly in the whole of Burundi.

Peace, Eliane

A big applause to the real STARS of the day!

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 

My sleepy dragon

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This month Akira, my youngest son of 13 years old, and I travelled to Antwerp for a filmshoot for the ‘Undetectable equals Untransmittable’ (U=U) campaign in Belgium. Whilst in the train towards Antwerp I asked how he felt to be part of this campaign, since this was not his first time participating in campaigns related to HIV and AIDS. He was also part of the ‘coming out of the closet’ (HIV uit de kast) campaign, the short movie ‘people from the HIV association‘, the Amsterdam 2018 AIDS Conference welcoming campaign, and now U=U. Akira’s answer was; “Mom, I am proud to help out. I believe what we do is pretty cool! I hope we are bringing the message across to people so the new generation won’t suffer a lot of HIV stigma anymore”. 

At that moment, I got a flashback of when I told him about my HIV status when he was 7 years old. I wanted to take this opportunity to proudly share this with you. Back then, Akira asked me “Mama, you have a lot of medicines. Are all of them for diabetes?’’ I said ‘’No, they are for something else’’. Immediately I felt that he was ready for me to share the truth.

He asked ”What do you mean for something else?” I was prepared! I knew he liked to watch TV cartoons with dragons, so I chose to use the dragon as a synonym for HIV. I said ‘’Akira, mama has a virus. This one, it is like a dragon in my blood. He has been with me for many many years”. Akira asked ‘’Mama, does the dragon breathe fire?”. “No, because I take medication everyday. The dragon is very weak now, the medication is putting out the fire. The dragon is asleep in a corner of my blood and he can no longer play to move and dance around in my blood’’.

Then Akira asked “How can someone get a dragon?’’ I answered “Through contact with blood of someone who also has a dragon and who is not taking medication. People have the dragon in their blood, but they do not know it because they did not yet test their blood for the dragon’’. He asked again, now really excited, ”Wow mama, do I also have a dragon in my blood?’’ I said, ‘’Good question! But you don’t have a dragon, because when you were in my tummy I already took the medication every day to keep the dragon asleep, so that he could not touch you. You were born without the dragon! And now I am telling the world that my sleepy dragon does not harm me or anyone close to me! You can hug me, the dragon cannot touch you. He is sound asleep”.

He asked again “So I don’t have a dragon?” I affirmed. “But how do you feel inside? Does it hurt?” I replied that it does not hurt, but that i have to keep controlling the dragon with medication and sometimes medication can make me sick for a few days, but that afterwards I am fine again. He responded telling me “When you feel sick again, let me know, I will make you a cup of tea!’’ Then he gave me a hug and said ”I love you mom, you are my super mama!” 

After this conversation I felt relieved to see how well and easy he took this information. I guess that when you inform people with a positive mind, they will take it in a positive way and that there will be less chance of rejection. And if indeed you are being rejected, it is because they do not (yet) have an idea what you are talking about. Then, just try again and focus on a positive way to explain once more until people understand your message. This is how you will contribute to ending HIV stigma.

Raising the next generation of stigma fighters

Informing and empowering the next generation is our pathway to ending HIV stigma. If they are willing to speak up without fear, then the World will change. It is this generation that I hope will grow up to see their mothers, fathers, and any other person living with HIV to live without fear of being stigmatised.  I am proud to be raising future ambassadors and stigma fighters, together we can change the World and the change starts with us.

So far I did not regret to disclose my HIV status to my son. I am actually enjoying doing activism with him. Dear parents living with HIV, I know that when it comes to stigma around HIV and AIDS, you do everything it takes to protect your children. I have done so for many years, yet at some stage I also realised that I had to go beyond that and that I also needed to retain their trust and share my HIV story. The day I shared my story helped me also to gain more confidence and freedom to share my HIV story with the rest of World. No more secrets! I am blessed to have them in my life and sharing the truth about my life with HIV was the best present I could give them in preparation for their future healthy life choices. 

I am a proud HIV MOM 

Peace ,

Eliane 

My Heroes of Hope

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As an African artist living with HIV in the Netherlands for more than 15 years now, I continue to experience a lot of stigma and discrimination based on me being open about my HIV and my beautiful colour. I realized that for many people with a migrant background stigma is indeed still a major issue. So, in April this year I launched Stories of Hope which aims to inspire people to share their talent as a positive way to deal with and raise awareness about stigma.

On 18 July, Mandela Day, together with the other ‘Heroes of Hope’ we shared our stories with the world!

Sharing our stories on Mandela’s birthday was a perfect moment as he continues to be a big inspiration to me and the world. I have learned a lot from his life experience as a freedom fighter, reconciler, unifier and inspirer. In the spirit of Mandela’s legacy, I truly believe that Stories of Hope will give people inspiration to fight stigma and bring positive change in our communities.

Stories of Hope can be visited at www.storiesofhope.nl. My dream is that our collection will continue to grow in the Netherlands and also beyond. Please vist the website and feel free to connect me to people that would like to share their inspiring stories with us. We believe in your talent and let’s fight stigma together!

A very special thank you to the European Aids Treatment Group for supporting me to make Stories of Hope happen!

Peace,

Eliane

Talented migrant

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My lovely people, can you explain to me why white people coming to Africa are quickly called “experts”, but people of African descent in Europe are often called “refugees, migrants, or illegals”?

After I married my husband, in the different countries in Africa we lived in I became the “expert’s wife”, Mrs. Becks. Although I always felt this title to be wrong, at the same time at all these places I was also recognised for my talents as an artist and appreciated as a human being, part of society.

The talented Mrs. Becks in South Africa

The ugly divide that the color of a skin can cause became evident to me in South Africa… I was 29 by then and I just bought my first house in Pretoria. Still, whenever a white South African appeared at our gate, for example for a delivery, I was always seen as the cleaning lady working for the landlord. Why? Because black women were supposed to be doing cleaning jobs in the suburb where we lived. They simply could not believe that I owned that house. So many times they refused to hand over my package, arguing they were only allowed to hand it over to the home owner! You should have seen their shock once Mrs. Becks showed her ID to them.

So, when we moved to the Netherlands, my husband kept his expert title, and me? From the cleaning lady I became the migrant, refugee or illegal. I was shocked to be labelled so strongly by so many in my adopted home. Mind you, I am proud to be called an African migrant, and I am really not bothered when people think I am a refugee as it is not a crime being a refugee.

But I am amazed by the prejudice that is part of these simple words. Despite me being Dutch and contribute to our economy through my business for more than 10 years now, you will be surprised at how quickly people are able to make up their mind about you, only based on the color of your skin!

But I am not harsh to them, a mistake can be made, right? But what bothers me is that still many people, instead of facing the truth, start a rant about that they are allowed to say what they think as they have ‘freedom of speech’. And to make matters worse, start pointing out the fact that I am not originally from this country and that I should know my place. Really?

An extreme story to illustrate this is one time when a dog was barking furiously at me. And the owner of that dog was getting very angry at me and told me in my face that I made her dog behave aggressively because I was black! I was speechless, but luckily my husband was with me and told the woman: “Does the dog see people in color? Only people see each other in different colors, for a dog every person is alike”.

Back to the expert/migrant issue; In fact we are both migrants as 1) my husband is not originally from Amersfoort and 2) his great grandfather settled in the Netherlands from Germany. So if you dig deep enough, you may discover that your roots are also somewhere else. And on being an expert, my talent is to be living for more than 18 years with HIV now, and I am also the first female in the World to play my Indonongo. So even if people try to label me, I know who I am and I am very proud of myself!

People may judge me based on the color of my skin or my African surname, but my actions always speak for themselves! So let’s all agree to love each other for the way we are and focus on using our talents to make this beautiful country an even better place. I thank all Dutch people who are giving their everything to make this happen, especially my lovely husband whom I love dearly.

Peace,

Eliane

I AM… OPEN

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Hello my lovely people. It is always great to have something to keep you positively busy during these strange Covid times. So I am very excited to share a new initiative called stories of hope with you. I will be leading this for the coming 4 months.

Just a little background: I was lucky to follow the STEP- UP training organised by the European AIDS Treatment Group (EATG). Together with many other HIV activists and advocates I gained a lot of extra knowledge on HIV. EATG also gave us the opportunity to pitch a project we are passionate about and I decided to share my dream of reaching out to people living with HIV with a migrant background with them.

And guess what? My project was selected and I received a small grant to launch stories of hope! This is such a great opportunity because as HIV stigmafighter I dare to speak out against anyone who stigmatises or discriminates people in my city Amersfoort, the Netherlands and Worldwide.

I love Amersfoort and during my time here, I experienced stigma from healthcare providers, people on the street and employers. It happens everywhere, right now! So I want other talented people that never let stigma stand in their way to join me and inspire people still facing stigma today.

My journey will start in Liendert, an urban area with more than 7,500 people of which 52% has a migrant background. I want to reach out to them and provide a safe space for them to process and share stories related to stigma in our community. Through my partners Het Huis van Bartels, a green oasis in the heart of Liendert, I will work with people with a migrant background and tap into their unique talents to open up and share their story.

And I have evidence this works! What would I have done without my talent as an artist? It helped me to accept my hiv status and focus on positive messages of hope for the hiv community. Even before I was diagnosed with hiv I already shared my talents and I realised that hiv did not change who I am. Through the support of organisations such as hello gorgeous, hiv vereniging and many others, I regained my identity and came out stronger than ever before. Now it is time for me to take action and inspire change in my community.

And you can be a local hero too! If you like my poster, get in touch and join my growing pool of talents through your own poster!

Are you getting excited as well? Join me through my facebook page or the website.

Have a great weekend.

Peace ,

Eliane

Strike a pose for a gender equal world

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To my beloved women worldwide,

#ChooseToChallenge #IWD2021

Why do many of us still underestimate the value we bring, why do we struggle to embrace our unique feminine leadership strengths, and why do we remain silent and let our rights be violated?

You are born with superpowers, let your abilities and achievements speak for themselves. Stand up now, start owning our power. Challenge other women when they disempower themselves, call out bias, and question stereotypes.

Your voice matters, celebrate women’s achievements. So, strike the #ChooseToChallenge POSE during International Women’s Day on 8 March 2021 and help us to forge an inclusive world!

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

Let’s get back on track!

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It is 1 December, WORLD AIDS DAY, and this year’s theme is “Global solidarity, resilient services”.

The world has known a rough year because of covid-19. And this has sometimes made us forget about the fight to end HIV and AIDS by 2030. I would like to take this moment to bring our fight back to the communities that need access to health services most, for example our Batwa, indigenous people in Burundi.

I cherish these moments of HIV education, using music and dance to connect and make important messages very easy to remember.

Let’s reach out to vulnerable populations and assist them to access HIV services when needed, and get back on track to end AIDS by 2030.

Peace, Eliane

You people

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I am born dark brown although many people prefer to call my colour black. OK, then I am black! Do you have a problem with that?

 It’s shocking how ignorant people remain about racism! In a week I experienced two cases, and I will share the most bizarre example here as it happened in my neighbourhood with someone I knew for over 10 years and with whom I did share joyful moments in the past. Until recently we always smiled at eachother, but a few days ago he finally removed the mask and showed his true self.

My friend dropped by and parked her car along the street in a way that we see many times and is totally legal. Despite this, he walked up to her and ordered her that she should not park there. Meanwhile across the street another car was parked which obstructed a footpath and access to a public wastebin. So my friend asked him if he also ordered that car owner to park somewhere else.

The owner of this car got away without a reprimand

When she told me what happened, my husband and I were very curious to find out why he ordered her to remove her car. So we decided it was best to have a neighbourly chat about it. I went to his place and explained why I was at his door. Immediately he started shouting ”I told your friend not to park there. She said she would be gone for 5 minutes but she was gone for an hour”.

I asked him “Do you tell everybody who parks there, not to park there?” And he said that he doesn’t talk to others. So I became more curious and asked why he decided to confront my guest today. He responded “Are you accusing me that I stopped her because she is a black woman?” I told him not to put these words in my mouth, and that I didn’t mention her skin colour. I also told him that it would have made  sense for him to talk to both cars owners which made him more angry, saying “You people make something big out of such a small thing, you are making an elephant out of a mouse. I am not listening to your nonsense. Does your husband know what you are doing to me?”

As I felt he now tried to shame me, I responded “Wait a minute, what am I exactly doing to you? I came to talk in good faith, but now you seem to turn this into something else. I am not hiding anything from my husband. You can go and ask him yourself if he is aware of what I am doing”. By now he was furious, telling me to “Go away with your nonsense!” before slamming his door.

I was left in shock as I respected him for 12 years. His decision to deny me the opportunity to explain how I experienced this situation, finally showed the real person hiding behind this smile. Looking back at what happened, to me it seems that he had been waiting a long time to share his true feelings about “us people”.

No doubt that one day he will understand that by denying “us people” to share our experience he is trying to silence or shame us into not mentioning the obvious racism that we experience so often. But if I see wrong happening, I will not be silent and continue to speak up.

Peace,

Eliane