Mercy: " It can be really easy to get lost in the complexities and challenges of doing work that tries to create change."
Issue VIII Cover Feature Interview Empower
Interviewed by Bhagyashree Prabhutendolkar
18th April, 2021
Mercy Shibemba is an award-winning activist and advocate for children and young people living with HIV. She works on youth engagement and participation across clinical trials, research and charities that support young people. She is the co-chair of The Sophia Forum, working to improve the rights, health and welfare and dignity of women living with HIV. Mercy is the recipient of The Diana Award and strives to live a life helping organisations enable young people to change the world.
What prompted you to take action and do something for young people with HIV and since when have you been doing it?
Mercy: For me, taking action was transformative for who I am today. Realizing that sharing my own story of growing up with HIV and owning it was key to taking action to tackle stigma, improve lives and create a world where it’s easier to grow up with HIV. I started doing this around the age of 17 and have never regretted it. My advice to anyone and everyone is to start where you are, if you’re passionate about something, let it lead you to action.
What is the Sophia Forum and what is your role at Sophia forum ?
Mercy: I am the Co-Chair of Sophia Forum, a charity that exists to promote and advocate for the rights, health, welfare and dignity of women living with HIV through research, raising awareness and influencing policy. It’s been an absolute joy and adventure to be part of the charity and see it grow from strength to strength and create an impact on the lives of women living with HIV both in the UK and globally. Being a trustee is both a responsibility and an engaging, inspiring role and perspective. In the UK, less than 3% of trustees are under the age of 30, so I’m grateful to have a unique position on a board that challenges, motivates and pushes me to grow.
According to you, what is the current scenario with regards to education, awareness and resources for those with HIV?
Mercy: Speaking about HIV is still a hugely taboo topic and stigma makes it a real challenge. So, it’s still a real challenge for people to access key and relevant information about HIV, most people think it’s something that doesn’t affect them. I’m grateful to have grown up with resources from the Children’s HIV Association, Avert and aidsmap but there’s still a need for better mainstream education and representation of people living with HIV. I try to use my platform to share what life with HIV is like and I know so many others doing the same. I’m hopeful that as compulsory relationship and sex education is beginning in the UK that this is an avenue for good resources to be shared about HIV and starts conversations so that people can be equipped and informed to protect themselves and not stigmatise others.
If you were to explain our readers about HIV/AIDS in a few sentences, how would you do so ? Also, can you tell us about the difference between HIV and Aids, causes and cure?
Mercy: Often, the terms HIV and AIDS are used interchangeably, leading to confusion about their differences. HIV stands for ‘human immunodeficiency virus’. HIV attacks white blood cells within the immune system. These cells will stay infected for the rest of their lives. If untreated, HIV will develop into AIDS. AIDS stands for ‘acquired immune deficiency syndrome’. It is an umbrella term for the illnesses that occur due to having untreated HIV infection for several years, by which point the immune system is severely damaged and unable to fight off infections. There is no cure for either, but medication means that HIV is a manageable health condition.
How do you align your career with your passion and your purpose ? Do you ever fall short of motivation and resilience? How do you cope up with it and rise again?
Mercy: Absolutely. For me, it’s a non-negotiable to wake up and be excited for the day ahead. I feel fulfilled and happy in my career - which is a privilege I am so grateful to have. Obviously, the fact that I love the work I do, doesn’t make me an exception in falling short of motivation and resilience! I make sure to take time out when I know I’m becoming burnt out. I regularly talk to my colleagues and friends about how I’m feeling and this helps. The work I do has regular reminders of why the work I do is important to me and the change I want to help make happen and this keeps me inspired, so I look for those examples.
How did it feel to receive the Diana Legacy Award and do the work you are really very passionate about?
Mercy: It was a real honour to be part of the inaugural group to receive the award. Princess Diana did so much work to try and shine a light on the issues and stigma faced by people living with HIV. To be recognized as someone continuing that legacy will always be something hugely special to me. It can be really easy to get lost in the complexities and challenges of doing work that tries to create change, so it was a really special experience to step back and be proud of what I had managed to do, both personally and with those around me who have been such a pivotal part of helping me become who I am and inspiring me and guiding me on the journey.
Can you tell us about the challenges and opportunities in activism ?
Mercy: Activism is about campaigning to bring about social and political change. Often, this change is necessary because of injustice that has been both ignored and supported by systems and people that they benefit. Because of this, it’s hard and complex and not something that will bring about a ‘quick-fix’ so can often be frustratingly tiresome. In an interview with Prince Harry, we spoke about the power of youth voice and how important it is to encourage and make space for young people to lead and drive change. On the other hand, activism is an exciting opportunity to put your voice and energy into action and create change. It’s a chance to make a difference in the world of those around you and gives unique insight and perspective. I’ve met so many people on my journey that I could never have known otherwise and learned so much from what it takes to be a part of sustainable change.
Your message for our readers and youth.
I think now more than ever young people should be willing to discuss the topics of taboo in our society. Young people’s voices are powerful, necessary and they are heard, we don’t have to be a generation that has to be overlooked. We can be and already are a transformative generation. Like Princess Diana said, young people really do have the power to change the world.
Here’s some things that have helped me on my journey, that might help you too:
1. Change is all about using your experiences to help others
2. Make the change you want to see in this world because you want to see it done, not because you think it will look good on your CV or because it will earn you some brownie points. Do it because you genuinely want to see change happen
3. How can you collaborate with those that are already creating change for things that you’re passionate about?
4. Don’t be held back by your own doubts. Don’t discredit yourself on the basis of not being who you think you need to be for a role, put yourself forward and apply for it. If it doesn’t work out, then it could open a door to something else, see where it takes you
5. Discover who you are, what you value and what you’re passionate about. If you’re creating change that you really truly believe in, others will believe in that too
6. Remember that sometimes it’s okay to be an ally. Soldiers aren’t constantly on the front line, they take time to support others and be part of something bigger than them
Change is about getting those around you to stand with you, and those that are at the top to listen to you, we must not be the generation that sees the needs of others and thinks ‘that’s a job for someone else’, you, yes, YOU have the ability to make change happen. Being a young person is about taking in everything that you can and putting out into the world everything you can to make it better. So with that being said, what could you achieve tomorrow if you did something today?