There are many inspiring stories from HIV activists, but few are as unique as Claire “Tuyishime” Gasamagera. She was born with HIV in the immediate aftermath of the Rwandan civil war and genocide. She told her incredible story of leaving Rwanda on a student scholarship to study abroad and how she became an HIV activist.
Where are you from?
I am from the country of Rwanda in Africa. I now call Detroit my home. My Rwandan name is Tuyishime, which means thank God.
Why did you become an HIV activist?
For me, it was a path taken since birth. I was born infected with HIV in 1983. My journey was not easy, when I was 18, I was one of the 10 gift students in the country that was given the scholarship to study abroad. At the very last minute, the scholarship was pulled because they told me that they could not give the money to a teenager who was dying from AIDS. That is how at the age of 18 I became an activist. At the age of 18, I felt that I was living, not dying as others had stated. At that age, I believed I deserved to live and have a quality of life like other teenage students. Eventually, they gave me another scholarship and that incident made me well known in the media. It inspired other young people with HIV to come out publicly with their disease and we started a non-profit to help others who were struggling with HIV. By the time I went to college I was a famous speaker, so I became an activist speaking out for the rights of those with HIV.
Why was the rate of HIV so high in your country?
Rwanda went through a civil war and infamous genocide. During that time many war crimes were committed by soldiers. One of the weapons used against women was rape and this is one reason the virus spread. In addition was a common African belief at the time that HIV might be a myth, that it was not real.
Do you think young Blacks today don’t understand the risk of possible HIV infection?
I think young Black men and women today do not only not appreciate the risk of HIV infection but in some cases undermine the work that has been done in the past and currently by HIV activists and researchers. For example, now we no longer have the “skeleton.” When I was an HIV infected child I used to be called the skeleton in school because I was so tiny. I also suffered skin rashes and was always sick with pneumonia. Today, we no longer see those images of people with HIV because of the access to HIV medication and healthcare.
What role do you think the drug Truvada and PrEP have had in the community when it comes to HIV risk and sexual behavior?
Because of Truvada and PrEP access, many young people think that HIV is no longer a big deal. But as a person born with the disease, it is a big deal. For a good portion of my life I was taking 12 pills in the morning and 12 pills in the evening, now I am down to one. Many young people today think that they can handle having to take one or two pills a day but they do not consider the fact that these pills come with side effects. For me, the medication causes weight gain, feelings of being drunk and lethargy. The stigma of HIV infection is also not being realized. A person is treated as having poor morals and decision-making skill because they have HIV and this is simply not true,
Many years ago, Rwanda instituted what are known as Gacaca courts to deal with war crimes on a community level. Please tell us what this means for HIV victims who were raped.
Gacaca courts are the way villages traditionally handled legal issues. There have been many people who have been taken to Acacia court for murder and rape. It allows the victim to tell of the horrific act and the perpetrator to confess to his crimes. But there is no real enforcement. People can run away and hide in other countries. It does not solve the problem, The only way we can truly solve the problem is by eliminating rape as a weapon of war.
What would you like to say in closing?
When I came to the United States, I did not have a home and I found that Detroit was a city I could relate to. When I am in Detroit, I look like everybody, people only realize I’m from another country when they hear my accent. What makes me love Detroit are some of the problems that it is going through as a city that are not similar but are relatable to Rwanda. In 1994 Rwanda was gone, off the map, but with the resilience of the people, we have built the country back. This is the same resilience I see in the people of Detroit. The people of Detroit are so proud so dedicated not leave the city but to stay there and rebuild the city. I am so lucky to sit on the Michigan Executive Council and to live in the city of Detroit. I am part of the movement to rebuild Detroit and make it shine as a part of America. I feel I have to do more and I will do whatever it takes to also continue my activism and involvement in HIV awareness issues.
