(C)overt discrimation?

As an African woman, having a white Dutch husband and mixed kids, I want to share my experience towards Black Lives Matter. In 13 years in the Netherlands, I have come across many facets of discrimination. I mostly talk about issues relation to HIV stigma and discrimination, but today I choose to share this experience.

Not so long ago, I used to take my youngest child to school by bicycle. Crossing a busy road for a young child is dangerous so I would put him in my transport bike and bring him to school myself. Like many other parents I would use a narrow path as a shortcut to school with our bikes. Along this path, people from the neighbourhood would also be walking their dogs.

I had already been using this path for many years when suddenly a woman, walking her dog, told me I am not allowed to pass. But a white mother, also with a child on her bike, just passed and the woman said nothing at all. So I asked “why am I not allowed to pass?” She said “because this is a walking path”. I replied, “Well ,we are both breaking the rules as dogs are also not allowed to walk freely and shit here”. She was furious.

The next day, she stopped me and said she was going to report me to the police. I told her very calmly ”Look around, if you are going to call the police, make sure you clean up the dogshit, because I will tell them it is from your dog”. She said that she pays taxes to have a dog (forgetting that she should still clean up his shit), so I told her that I too pay taxes to use the path and I will tell the police to ask her how to explain the tons of dog shit along the path. I reminded her “Don’t be confused, I am Dutch and I know the rules and I am not afraid to talk with police”.

Two weeks later, she confronted me again, now with an old man. He said “You never went to school, you cannot read the sign. You are not allowed to use this path”. I replied that I can perfectly read the sign and that it says that you can walk here and that when walking with a bike in my hands, I am not breaking the rules. But that I know that a dog needs to be on a leash and that his shit needs to be cleaned. So I challenged them on who is breaking the Law right now? He was not happy with my answer and clearly did not expect me to stand up!

A week later, they were again both waiting for me and now blocked my passage. I thought that they would just let me pass. The old man said “You again? You are not allowed to pass here”. I asked why and made it clear that I am not going to use any other road. The old man then yelled at me “Houd je bek zwartkop (Shut your mouth, blackhead)”. Then he pushed me to the ground which made me almost fall into the stream along the path. When I got up I grabbed him by his shirt and looked into his eyes, and all I could read was his hatred for black people. And I already had done my research! Two white mothers, using the same path, never heard anything from those two, but one other black woman had exactly the same experience as me. 

When the police choose to believe their white citizens… 

I called my husband to tell him I was going to report these people to the police, so I took my passport and went to the police station. Guess who I saw coming out of the police station? The same woman who pushed me, she went to report me to the police. I became curious of what she could possibly have told the police as I had not committed any crime.

So after telling my story, the police officer told me “I don’t believe your story, you are the criminal”. I asked “why? what did I do?” He said “you had a knife and you were threatening this woman who you are reporting now. We know everything and stop acting like you are the victim!” I could not believe how I had transformed from a friendly mother being threatened and pushed to a criminal. I told the police that I have a witness, and that another dark mother had been experiencing exactly the same. The police send me away, and told me that my accusation had no value. So, the next day the other mother and I went to report our case again and the police responded that they will investigate.

Meanwhile my husband helped me to make complaint online through the anti-discrimination agency. Next thing I got was a visit from an anti-discrimination officer, offering me counselling as a victim. I told them that I don’t need counselling, I need Justice.

Then one day, a police officer showed up at my home. He told me that I should meet the old man, share a cup of tea at his home and talk about it. Why the hell would I share a cup of tea with a man full of hate, in his house? What would the police do if he pulled a gun and finish me in no time? And why would I go to his house, and why would he not come to my house? The police officer replied that he may feel comfortable in his own house. I said maybe he has a hidden agenda to kill me in his home and tell you that I attacked him. The police officer then said that he would check with him to meet in a neutral place. I said that I would only do that if the police officer would be available to look after me.

While waiting for the police officer to come back with a solution, they surprised me again by showing how much protective they are towards their white citizens. He came with an instruction for me to use another way to bring my child to school or wait to use that path until they are done walking their dogs. I looked the officer into his eyes and said “Listen, for a very long time now, they harass me and the other black woman, and they allow white mothers to keep using this same path. I am not going to change my route because you want to protect those people and their dogs. I want you to go back and tell those people that next time they see me to run. I will not tolerate them bullying me since you police fail to protect me and choose their side. If all mothers are going to stop using that path, I will stop, but if it’s only me who needs to change, no way. If they ever come close to me I will punish them myself and then you will come to take me to jail as a real criminal. Just tell them to wait until I have passed or go walk their dog in other place. Don’t come back again to ask to talk with them, I will teach them myself how to respect me.”

The next day I went to school on that same path, and when the woman saw me she immediately ran into another direction. My son noticed and said “Mom, she is now afraid of you, why?”. Well, I guess the police did at least one thing right! So now this woman knows that I am not a joker when it comes to discrimination, and the old man? He never dared to look into my eyes again.

Up to today, those white people got away with their violent and discriminatory behaviour. And I am still wondering why the police so openly chose the white people’s side and chose not to believe my side of the story. Did the police really expect me to keep my mouth shut like I was told by those white people? No! Because Black Lives matter everywhere!

Peace, Eliane

Stigma at times of COVID-19

Before we even heard of COVID-19, people living with HIV or AIDS were already facing stigma and discrimination as I experienced and shared with you regularly with healthcare providers throughout the years. Many more people started facing stigma when COVID-19 came along in many ways, and this made things for people living with HIV or AIDS even worse.

I would like to share my experience during this period and how I overcame the stigma and help the healthcare provider to open up her eyes and take into account what her actions can mean for others. In January I needed to do a CT scan and they happened to find a something on one of my lungs. For my entire life I never had to see a pulmonologist (lung doctor) before, so on 12 February I met one for the first time.

I was nervous and curious the same time. I am used to visit hospitals for many checks up and doctors always welcomed me through a hand shake. It was at a time when in the Netherlands there were no rules yet on how to behave in these different times. So we all still went about our business as usual and every doctor I met was still shaking hands. So I had quite a big expectation of warm greetings from this doctor since it was our first meeting.

When I gave my hand, she rejected me by saying “Oh no no, I don’t shake your hands, there are many viruses around. I don’t dare to be infected!“ I immediately felt confused and started thinking and asking myself what she meant by many viruses? I don’t have Corona, I don’t have flu, the only virus I have is my HIV. Since she read my medical file she knew what kind of virus I have. So this made me start doubting her words. Why would she talk to me as if I am very dangerous to her? Did she mean that my virus would jump to her by shaking hands? I really needed to find the reason behind her behaviour.

A week later some hospitals started introducing information on not shaking hands. But there was still not yet a strong medical protocol in place. So I went back to see my HIV Doctor, and this was also a new person as my previous doctor had left recently. So on 28 February I met her for the first time, and I was not expecting to shake hands. But, when she introduced herself, she said “Hello, I am not suppose to shake hands but since this is our first meeting I make an exception and I feel comfortable about it”. This is when I explained my experience with the lung doctor and how hurt I felt. So, she advised me to better talk to her again.

Afterwards, this whole episode with the lung doctor kept on playing in my mind; how she did not show empathy during our conversation, and how she also failed to really answer any questions on the diagnosis. I went completely crazy, and I decide to see my GP first to explain the results of the scan better to me. My GP explained very clearly and then I shared with her how I felt about the lung doctor, and she also advised me to go back and talk.

I waited until May, and I finally got an appointment this week. I was very calm, and not angry but curious. I told her that the main reason I came back was to talk to her how I felt last time we met. I asked her what she meant by saying “Many viruses”. I explained that by the time we met I did have only one virus, HIV. That sometimes I get discriminated in hospital because of that. She was completely in shock and said “I am sorry I meant to say flu, corona virus, not HIV”. then I said “Well, you should have been specific, because telling somebody with the HIV virus that you don’t shake hands because of many viruses, from experience I immediately understood that you meant HIV virus since I did not have corona, or flu”. She said 5 times sorry, “I am sorry I was not aware that people can get it wrong when I say virus. But you are right, I should have said flu or corona”.

I explained that we often face stigma as some people still believe they can get HIV virus by shaking hands, that what she said really bothered me. But that I did not want to accept this, and I needed to find out what she meant. She thanked me and said “You are a strong woman to come back and talk about this with me, you taught me a lot and I am going to use it with the next patients”. I told her that I did not do it for myself, I want to prevent this from happening to other patients like me. Not everyone will dare to challenge a doctor on this, especially my Africans migrants. And they will go home and feel bad, confused and get depressed by this. But I choose to clear my path before I move on. I need us to be clear and make sure we understand each other.

An important lesson learnt for her is that language matters. I am sure next time she will take into account which words to use when communicating with patients like me so then they don’t feel offended!

Peace, Eliane

International Women’s day: Challenging HIV stigma

Today I was invited to celebrate International Women’s Day in Culemborg. Foundation Intercultureel Vrouwen Culemborg (DIVC) organized a party with the theme ”Freedom”. The event started at 13h with a speech from the municipal councillor of culture. Then a poem read by a poet from Culemborg. Throughout the programme there were many different performances from different cultures, choirs, bellydancers and fashion shows.

I was there to share my story: HIV and Freedom. This was a story of living through 17 challenging years with HIV. You know that I am always ready to take any opportunity to fight HIV stigma. In a way, these 17 years have also been a walk to freedom and that is what I wanted to share:

In short, my story covered three stages towards freedom:

  1. A new beginning when I went on ARVs and was able to fall pregnant and have healthy children
  2. Out of the closet: When I finally was open to speak about my status
  3. HIV stigmafighter: Adressing inequalities and stigma around HIV

I stressed that you cannot gain freedom without a fight. And that is why I am a stigmafighter. To fight the stigma we still face everyday, lift people out of isolation because when you are hidden you are not free!

After my story I ended with my poem the mask. People approached me with compliments and told me how my story touched. Some women said they never talk about HIV at home, and seeing me being so open about HIV and sharing my ups and downs, and my success so far, they told me “You are a Superwoman”. We finished with a very inspiring female DJ from Morocco. Wow, she can really sing and DJ at the same time. All women from different cultures went crazy on the dancefloor. Any song she played, we just danced and were happy to be together.

Us women face different challenges in our life. Even when we think we are in a free country, we still need to fight for our freedom. I am glad I was able to inspire more women in Culemborg. For those that were there: You are all my Superwomen!

#EachforEqual. Happy women’s day to all of Us.

Peace, Eliane

A true warrior

For being a warrior there is no need to be in a war of guns and fight until you win. I have been in many different wars with and without gunfire. I am still fighting one long war, which I call the “STIGMA WAR”.

I am a warrior in the war against stigma, discrimination and ignorance about HIV. In this war I break the silence and the shame about being HIV positive. And I am ready to win this war because I fight it with compassion.

Yes, I am a warrior in this life full of challenges. If I would feel pity for myself, hate my life, it would not have made me feel better. But when you love life, it will certainly love you back! So I choose to do what is best for me. Breaking the silence, fighting for my rights is the best thing I can do. And I continue to do so.

Please join me in this war against STIGMA and DISCRIMINATION. We will win. Let us put our energy together and break the silence. Let us speak out and loud. Let our voices be heard!

This life with HIV has many challenges. It is like the weather: There are rainy days, cold days, warm days and you adapt to any weather condition. It is the same when living a positive life. Faced with any situation, we have to find a suitable solution. If I turn around and look back at everything I have been through, I clearly see that I am a warrior. And I am not afraid in this fight, I am not afraid of what people may say or how they may treat me. I broke the silence. And in the end the victory is on my side.

I just want to breathe my emotions.
I just want to smile like the warm sun.
I just want to laugh all day like running water in a river.
I just want to share my victory with the world.
Forget about the time I used to cry like summer rain.
Forget about the time I could not choose between right and wrong.
Forget about the time I was silent because of fear of being hurt.
Forget it. It is over now; I just want to breathe my emotions!
From now on I will joyfully sing like a morning bird.
So that people all over the world hear my voice saying:
“Hey you, stop the stigma!”
I am a warrior in a war without guns.

Peace,
Eliane

HIV medication exchange

I would like to share an article (in Dutch) published on 9 Jaunary in the magazine Hello Gorgeous. It is about a topic that I am really passionate about: Ensuring that unused HIV medication, still in its original packaging and meant to be destroyed here in the Netherlands, reaches people with HIV in places where there is still no access to life-saving medication. In the text below you will find the translated text in English:

Ready to be sent to people without HIV medication in Romania

Hello Gorgeous: “How did you get this idea to collect HIV medication for Romania?” Eliane: “Last year I met a Romanian woman during a meeting of the European AIDS Treatment Group in Brussels. She was looking for people who wanted to donate their HIV medication to pregnant women with HIV. We became friends on Facebook and kept in touch. When she told me that these women are regularly without HIV medication, I was heart-broken. Without HIV medication they risk their children being born with HIV. I don’t understand this is still possible in Europe. “

Hello Gorgeous: “What are you doing to tackle this?” Eliane: “I am continuously asking people in my network, via messages and emails, if they have any medication left. Often, this happens when people switch medication, then they are left with unused medication. I collect this, compare it with a list I get from my contact in Romania, and then I send the required medication to Romania. It hurts me, to see we are so committed to climate action, for example by recycling, but that we are still throwing away perfect medication which can save lives elsewhere. This only happens because our rules are such that medication prescribed for one person cannot be transferred to someone else.”

Hello Gorgeous: “Have you also approached pharmacies to help you?”. Eliane: “Certainly, I talked to a number of pharmacists here in Amersfoort. They told me that they used to collect medication in the past but that this ended when health authorities required them to stop this. I always tell them to give it to me secretly. It is so difficult to accept that unused medication is destroyed while we can find a purpose for it. Meanwhile, we still worry about someone dying every 40 seconds of the effects of AIDS due to a lack of access to medication.”

Hello Gorgeous: “What can people do if they want to send you their unused HIV medication?” Eliane: “If people switch their HIV medication and still have unused supplies at home, they can contact me. Send me a message via hivstigmafighter@gmail.com and you will hear from me.”

This message gives me courage to continue HIV medication exchange

Hello Gorgeous, thank you so much for publishing this article. Already I have been approached by people, asking me how to send their left-over medication to me. Many people living with HIV in Romania will forever be grateful to you.

I really hope to expand this project in 2020, so more people with HIV in Romania or elsewhere in this world can continue using life-saving HIV medication even.

Peace, Eliane

Be my messenger

Dear Santa,

I wanted to ask you a favour for this Christmas season. As a woman living with HIV for 17 years I am grateful to live. I look at the future positively. Only sometimes I fall back when I experience stigma with health care providers or when I hear that in some places pregnant women have no access to HIV medication for themselves and their yet to be born children.

It hurts to hear that in so many places there are still pregnant women who do not have access to life saving medication. We should no longer have children born with HIV. So last week when I organized a Meet & Greet at the pink statue of the Crying Woman here in Amersfoort, my purpose was to get an impression how people were touched by the message behind the statue and to hear their thoughts on issues such as access to medication for all, especially pregnant women.

The understanding of the people I met and their support for the issues I raised, especially fighting for universal HIV medication access for pregnant women, was overwhelming. So I asked people to help spread my messages. Some even wrote and shared their own messages:

I am very grateful for the support I received that day. It shows that people finally understand how hard it is to live without having access to medication and fear that your baby risks to be born with a preventable condition.

The Meet & Greet gave me a lot of courage to keep fighting in 2020. Dear Santa, when you give presents tonight, I want to ask you to include these messages to everyone .I know you can reach so many people in one night, including the decision-makers. Let’s see the positive change in 2020.

I wish everyone a merry Christmas and am positively looking forward to 2020.

Peace,

Eliane.

The crying woman is in Amersfoort

Today, together with councillor Tigelaar, I unveiled the crying woman here in Amersfoort. It is such an honour to have her at the Lievevrouwekerkhof in the heart of lovely Amersfoort. Again, a great moment to share my story on the importance of fighting HIV stigma. The story continues. Where shall this beautiful statue travel next after a week in my hometown?

Peace,

Eliane

Unveiling the crying woman on World Aids Day 2019

Today, together with Dutch celebrity Angela Groothuizen, Mark Vermeulen the director of Aidsfonds, and 11-year-old Jacky, I unveiled the statue of a crying woman. She sheds one teardrop every 40 seconds. This symbolises the fact that every 40 seconds someone in the world dies of AIDS. It was a great honor to be part of this. These pictures speak for themselves:

Here you can read my full story in Dutch. The text is in Dutch, and the movie is in English. It was a memorable day. I will keep on fighting!

Peace,

Eliane

Stigma & World Aids Day 2019

Look at this young man, left to fight alone in this World. What do you think happen to him? I blame stigma. HIV stigma killed both his parents when he was 14. I feel sad every time I look at him.

HIV stigma, I am very angry at you! I will never forgive you. Of what you have done and continue to do to me and others.

Remember, whatever level of HIV education you have received, you are still at risk. Even those educated are still afraid of being judged: Many of us still do not want to be open about this terrible disease. When she was sick, my cousin’s answer was “I have got malaria”. That was her escape route.

Those not well educated yet, sometimes continue to uphold dangerous beliefs and practices. They think the disease can be ‘cured’, actually by putting other people at risk. They can make the problem bigger instead of solving it.

Sometimes I wish there would be a good peer education system. It helps the educated and non-educated to hear positive stories. It helps to understand, to share, and to change positively. I know the power of peers as I see it work here in the Netherlands.

I wish that there is no stigma. That in every corner of the world there a place where people meet and share. And where people can get access to their medication.

But the World is unfair, in many places in this World children still lose their parents. How can we end HIV/AIDS when people do not have access to education and treatment? As HIV stigmafighter, I dedicate my life to educate  people. I empower people living with HIV, especially the Young Generation.

During World Aids Day we honor the dead by fighting for the living.
I will fight for those deprived of chances and a right to a healthy life.

My hope is that one day in the midst of the darkness that is stigma, light will persist.

Peace,
Eliane