The Ohio AIDS Coalition (OAC) and AIDS Resource Center Ohio (ARC Ohio) are committed to providing the best service and assistance to our consumers. OAC and ARC manage to stay connected to the HIV/AIDS community through our own staff and volunteers. Vivian Nassali, an ARC Ohio staff member, brings her own personal story of HIV/AIDS to ARC Ohio and her job as a Case Aide. Vivian works with case managers to provide assistance to people living with HIV/AIDS (PLWHA) in the state of Ohio.
I had the wonderful opportunity of sitting down with Vivian to discuss her struggles with HIV/AIDS and how it has affected her work and daily life. Vivian lost her mother, Rodah, to HIV complications in 1993 when she was only five years old. Living in her home country of Uganda, Vivian says she experienced stigma due to her mother’s positive status. People would avoid her and her mother for fear of contracting HIV. Despite all the compassion she received due to her mother’s HIV status, people still kept their distance from Vivian due to their fear of HIV. As you can imagine, this was extremely difficult for a young Vivian.
Vivian stressed to me that she remembers her mother as loving, kind, and supportive, even when she was at her sickest. Even while her mother was in the hospital, she was first and foremost an adoring, caring, and warm mother.
After her mother’s passing Vivian was adopted by her aunt and immediately got involved in HIV/AIDS volunteer work. Vivian shared a memory of her as a young girl passing out condoms at an HIV event. Her volunteer work eventually led her to pursue a career in HIV/AIDS. Vivian moved to the United States when she was 14 years old and continued her HIV/AIDS volunteer and advocacy work through organizations like AIDS Walk.
Vivian has noticed that the stigma felt in 1993 Uganda is often times still felt today. She has family members that don’t understand the disease, how it is spread, or how it is prevented. She has noticed mistreatment towards those with HIV in her own family. Even her grandfather, whom she labels as an intelligent man, still has very dated ideas about HIV/AIDS. For a long time Vivian refused to tell people what her mother died from, fearing stigma or ostracism. She blames the stigma around HIV on the false information so profusely spread by the media, even stating that at times she had been caught up in what the media was saying. Her passion for HIV advocacy eventually led her to Ohio where she joined AIDS Walk, eventually taking a job with ARC Ohio. Vivian made it clear that she is passionate about her work and that passion stems from her mom’s fight against HIV.
Vivian seemed excited to change the way people view HIV/AIDS, especially through education. She believes that the ideas around “HIV has changed a lot, but people should know more…” about the disease. We discussed the idea of PrEP and she believes it may help change people’s perception of the disease, while also promoting prevention.
Vivian has brought experience and knowledge to ARC that will benefit the entire organization. We can all learn from Vivian’s background to create better programs, assistance, and education to Ohio.
Vivian is organizing a celebration space with her fellow case aides/managers at the ARC Medical Center. The Celebration space will memorialize family members and friends who have lost their fight in the battle against HIV/AIDS. The event will take place on December 6th from 4:00pm until 8:00 pm during the Short North’s Gallery Hop. A hat drive will also take place during the event to benefit ARC’s consumers throughout the winter. Contact Vivian at firstname.lastname@example.org for more information.
I would like to thank Vivian Nassali for sitting down and sharing her story with me, she has shared a perspective that will help many people at ARC Ohio and OAC.