By Taroue Brooks
Why are you committed to HIV/AIDS Awareness?
I am committed to HIV awareness because it disproportionately impacts my community. African Americans account for 13% of the US population; yet, we represented 42% of new HIV diagnoses in 2018. We have made strides since the onset of the epidemic; however, I believe that more can be done to prioritize prevention programming that is culturally tailored to address the needs of those not typically addressed in the discourse of HIV prevention, such as black women across the lifespan. Of the new HIV diagnoses in the U.S., 11% were among Black/African American women and 92% were contracted through heterosexual contact. One in six of new HIV diagnoses in 2018 were among people aged 50 and older and still this information does not seem to trickle down to the communities that can benefit from this information. For example, when I speak about HIV and how it continues to be an issue in our community, I often receive responses like, “HIV is still a problem?” or “I thought HIV was a gay disease,” or “You mean, older people are contracting HIV too?” among others. These are all unfortunate responses given that HIV has been in existence in the U.S. for nearly 40 years. I am committed to HIV awareness because we must actively work to translate research to effect change within our community in ways that resonate with our lived-experiences. As a researcher I have a responsibility to address the issues that adversely impact my community—no matter how difficult the subject matter. As a proponent of health equity I have accepted the charge to confront a highly stigmatized topic because silence is not an option—the stakes are too high.
Tell us about your documentary.
My first film, which was a documentary entitled, Even Me, was developed as a result of both a personal experience and professional interest in the wellbeing of older adults. If you follow my work you have most likely heard some variation of my personal story, involving one of my family members who was facing both physical and mental health decline due to an undiagnosed sexually transmitted infection (STI) that spread to her brain. This incident was particularly devastating for many reasons:
1) this STI (neurosyphillis) was treatable but was not diagnosed nor treated, 2) my family member’s annual visits with her healthcare provider was not enough to protect nor keep her healthy, and
3) her age (80-years-old), racial identity (Black/African American), and the fact that she was a female, were most likely factors that influenced this negative outcome that ultimately lead to her death.
Professionally, as a social work practitioner specializing in gerontology, I was furious. I was furious because the healthcare system failed my family, and angry because oversights regarding an older adults’ sexual health is not uncommon. In an effort to advance the message highlighting the importance of sexual health across the lifespan, to dispel the myths regarding HIV and beliefs that older adults are asexual, and to provide STI/HIV awareness and its impact on the Black community with specific focus on older African American women, my first documentary, Even Me, was borne. After its development the community engagement and dissemination of this information became more attainable through partnering with churches, community based organizations (CBOs), universities, hospitals, clinics, film festivals, and other organizations that serve older adults. Through the collection of pre/post surveys we were able to measure the impact of this film among various viewers and found that people that watched the film had an increased understanding of HIV related risks for older adults, increased knowledge of ways to reduce individual risks and awareness of the lack of sexual health education among health care providers. Even Me was completed in 2012 and has received multiple recognitions and awards. It continues to be used as a tool to provide education and awareness for older adults, emerging and practicing clinicians.
Why was it important that you earned your PhD?
It was important for me to earn my Ph.D. for many reasons. As an African American woman it was important for me to be represented in the spaces that were informing and advancing knowledge in ways that impacts me and my community. My experiences in higher education have not always been positive, in part because of the historical legacy of exclusion and systematic racism that continues to plague various colleges and universities still today. Yet, I have had a handful of mentors that have provided me guidance, support, and a safe haven along the way. It was understood that what they were providing me, as it relates to mentorship, someone along their journey had provided for them. I began to become indoctrinated into this very small circle of Black women scholars that impressed upon me the importance of paying it forward— for the next generation of scholars and for the culture. It is important for young African American girls and boys to have mentors and community members that look like them throughout their education. Our presence in these spaces demonstrates to younger generations that no matter where you come from, despite the challenges you may have faced in life, your potential is endless, your diverse contributions and the unique lens from which you view the world are invaluable.
Professionally, it was important for me to earn my Ph.D. because I wanted to continue to systematically develop ways of intervening in my community using platforms that we are more inclined to respond to and learn from. Understanding that our culture is steeped in oral traditions, it is my desire to develop content where communities can see themselves represented through storytelling providing a pathway to consume positive messaging for health promotion. Pursuing my doctorate has provided me the tools to create this work using multi-media as one of the ways to translate research and to carry it out through all of its phases (development, implementation, and evaluation). Earning my Ph.D. was a long 5-year journey, which does not end here; it marks the beginning of an even longer voyage to maintain diverse perspectives in research and challenge the status quo.
What is next for you in this fight with the health crisis in the African American community?
Recently I was awarded a diversity supplement grant from the National Heart Lung and Blood Institute (NHLBI), to support the development of an educational film entitled, TRY (an acronym for Translating Research for You). The film was developed to complement a larger study that involves a 5-session educational curriculum for people living with HIV, have histories of trauma, and cardiovascular risk. The larger study currently being fielded is, entitled, “Healing our Hearts, Minds and Bodies” (HHMB; also funded by the National Heart, Lung, and Blood Institute) lead by Drs. Wyatt, Hamilton, and Brown. TRY is a feature length narrative film inspired by real life events depicting a day in the life of Black and Brown Angelinos living with HIV as they struggle to maintain healthy life choices during COVID-19. It provides a visual representation of the consequences faced by communities in the aftermath of unresolved trauma. This is an educational narrative film project developed to enhance health outcomes by translating research for communities that may benefit from health promotion strategies and programming. The film is certainly not the traditional instructional video, but uses the medium of narrative filmmaking to provide tangible and concrete examples of the health strategies learned through the HHMB curriculum. It is my hope that once the participants view the film they will feel inspired and feel more equipped to use the concepts learned through the HHMB program and exemplified on screen via TRY to improve their health during these unprecedented and challenging times. The next steps for this film would be to expand its viewership beyond the participants of the HHMB study and to use it for education among academic and nonacademic audiences as well. Using the same model that was used for community engagement with my first film the foundation has been laid to revisit these community allies and film festivals to expand the reach of TRY. This film has the capacity to change minds and to foster compassion for people living with HIV while facing multiple layers of adversity—yet finding hope to carry on.
In your years of working in HIV/AIDS, what have you learned most about yourself?
In my years of working in HIV I have learned quite a few things about myself. When I was growing up I was often penalized for speaking up and questioning those in authority—in school I was frequently written up for incidents considered as “insubordination”. Today, I understand that those very qualities and attributes that were negatively viewed in traditional patriarchal spaces are not only needed but are vital for the work that I do today. I have learned that God made me the way that I am so that I can speak up unapologetically when needed, challenge, question and push back when necessary. I learned that my love for Black people gives me strength to keep going on difficult days and that I am comfortable in having uncomfortable conversations—all of which is is necessary to be successful in this line of work.
What advice do you have for someone who has a loved one with HIV?
The advice I would give someone who has a loved one living with HIV is, if they are not knowledgeable about the virus, they should educate themselves. I believe a lot of negative interactions or responses to someone living with HIV are out of fear or ignorance. The more we know about HIV the less likely we are to perpetuate stigmas, judgments, and shame. I would also encourage that person to check in with their loved one and ask how they are doing and how you can best support them—its also ok to give your loved one space if requested. It is hard to believe that many people, still today, hide their status out of fear of rejection and judgment. Secrecy can be very stressful and can negatively impact your loved ones mental health. Unconditional love and understanding is what we should offer our loved one’s living with HIV as stigma, fear, discrimination and homophobia can prevent folks from seeking healthcare services and treatment.
What does mental health have to do with HIV?
Mental health is an important consideration for anyone living with a chronic health condition. For people living with HIV, depression is very common.Some antiretroviral medications may even cause symptoms of depression and anxiety. It is important for people living with HIV to have regular visits with a medical provider that they feel comfortable speaking openly with about their physical and mental health. Research has shown that people with HIV have higher risk for mental health conditions and are twice as likely to have depression as people not living with HIV. It is important to know that you can seek treatment for mental health conditions and that you are not alone.
TRY FILM Project (Facebook)
About DR. MEGAN T. EBOR
Dr. Ebor is an Assistant Project Scientist at the Center for Culture, Trauma and Mental Health Disparities in the Department of Psychiatry and Biobehavioral Sciences at the UCLA David Geffen School of Medicine. Her research and scholarship examines health outcomes for older racial and ethnic minority women and communities of color. This research is guided by her interest in ways to improve sexual-health outcomes for African American women and older adults.
Specifically, she develops behavioral health interventions and is particularly interested in harnessing multi-media platforms for health promotion and disease prevention. By merging science and the arts Dr. Ebor aims to make research translational to under-resourced communities. Her debut documentary, Even Me, is an award-winning film that addresses the rise of HIV among older adults of color – a subject that you will not see addressed in any other documentary. The faces of HIV captured in this film are surprisingly different from what one would expect – highlighting that age is not a vaccine for HIV. Even Me, focuses on the ways in which the intersections of age, race, and gender impact the sexual health of older African American women living with HIV. This research is grounded in her practice experience and interdisciplinary training in social welfare and gerontology. Dr. Ebor was recently awarded a diversity supplement grant from the National Institute of Health (NIH)/National Heart Lung and Blood Institute (NHLBI). This research involves the development of an educational film entitled, TRY (an acronym for Translating Research for You) as a sub-study under the “Enhancing patient and organizational readiness for cardiovascular risk reduction among ethnic minority patients living with HIV” trial (also known as Healing our Hearts, Minds, and Bodies, or HHMB) which focuses on Black/African-American and Latinx patients; trauma histories and barriers to cardiovascular (CVD) care. This film serves as Dr. Ebor’s debut feature length narrative film developed to enhance the uptake of health concepts initially learned through instructional content.