“Wilhemina’s War:” Reaction to the PBS Documentary Depicting the HIV/AIDS Epidemic in Rural SC

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AIDS and HIV in cube

Last Monday, PBS debuted the documentary “Wilhemina’s War,” a film that showcased the lives of those affected by HIV/AIDS in lowcountry South Carolina.  Wilhemina Dixon is the caregiver of two family members living with HIV – her daughter Toni and granddaughter Dayshal.  The film revealed the struggles of accessing proper health care in the Palmetto state, due in part to the lack of funding and political supports that disadvantages and compromises the health statuses of those living with HIV/AIDS, particularly those in rural parts of the state.  

Being someone who grew up during the 1990s when HIV/AIDS was widely discussed, and having interned at a non-profit organization that serves individuals living with HIV/AIDS, this was a film that instantly grabbed my attention, and I knew that I had to watch.  What took place over the 55:31 minutes the documentary aired unleashed a plethora of emotions within me – shock, anger, sadness, and pride.  I had never watched something so powerful and stark before in a very long time; I knew that this was a film that I had to share on the blog, and why it is dire to understand the healthcare plight of HIV/AIDS in South Carolina.  

HIV/AIDS in South Carolina:  A Complete Political Failure

What profoundly stood out to me was the utter political failure of our legislators, especially Governor Nikki Haley, to provide adequate financial, medical, and community supports to individuals and families affected by HIV/AIDS.  To make matters worse, those hardest hit by the lack of resources are those like Wilhemina and her family – people living in rural areas where accessing basic needs was a struggle already; needing assistance to be healthy while living with a lifelong condition like HIV/AIDS made things literally a life or death matter.  

As a South Carolinian, social worker, and disabled advocate, I was well aware of the healthcare cuts and changes that has been implemented under Governor Haley’s leadership; however, I was shocked to learn how little supports were actually provided to those living with HIV/AIDS and the communities they resided in.  Furthermore, I was angered to learn that by refusing to accept the Affordable Care Act (better known as Obamacare) Medicaid monies, the additional funding would have drastically assisted in improving the health care resources and access in our rural areas, particularly in supporting smaller hospitals that would have benefitted exceptionally from the Medicaid dollars they had a right to utilize.  The picture painted about the political disconnect and disregard for the health statuses of South Carolinians living with chronic conditions like HIV/AIDS was disheartening.  How can we allow legislators to do nothing to improve our healthcare opportunities in this state?  How did we get to this point, and what actions must be taken to finally do right by those like Toni and Dayshal, and caregivers like Wilhemina, who strived to make due with the little she was given to assist and support her family?  As a South Carolinian, I was embarrassed by my state; it was yet another example as to why we are always at the bottom, statistically, regarding matters that should be a top priority.  These matters are constantly used as political chess pieces, and we find ourselves time and time again on the losing end of the game when we do not value human life and livelihoods.  

Wilhemina:  A Matriarch After My Own Heart

Besides the political aspects of the film, it was the human experience shared that resonated with me.  Watching Wilhemina evoked so many feelings within me, so much that I cried.  

Wilhemina reminded me so much of Big V, my beloved Grandmother.  

Wilhemina’s strength, compassion, and love for Dayshal and her family resonated with me because that was how my Grandmother was.  The parallels of these two women shocked me, so much so that I had to write about it.  

Wilhemina raised Dayshal from birth, and took stark care for her when her life expectancy was uncertain.  My Grandma raised me from birth, not knowing how long I would live with Osteogenesis Imperfecta (I was given the expectancy of 4-8 years by my doctors).  

Like Wilhemina, my Grandmother did not finish school, but she was very smart in knowing how to make something out of nothing, and to make the most of what she did have.  Both of these women loved their granddaughters, who had severe health conditions, unconditionally and fervently.  Hearing Wilhemina discuss how she took care of Dayshal when she was a baby reminded me of how my Grandmother discussed having to take care of me in the hospital because the nurses were too afraid to touch me – I was born with a broken arm and was incredibly fragile.  It is astounding how these women, with no formal medical education, instinctively knew to provide the best care for medically “fragile” children that the actual medical professionals were hesitant to.  

The way Wilhemina fought to ensure that Dayshal was able to make her medical appointments, obtain the medications she needed, and pushed the importance of education paralleled with my own life and what my Grandmother wanted for me.  Though I am 10+ years Dayshal’s senior, being a Black girl with a medical condition in small town SC has not changed much from what I saw in the documentary.  Wilhemina, like my Grandmother, knew that life would not be easy for girls like Dayshal and I, and they both did their best in protecting us from the ugliness of how people could be, but also educated us on the realities.  Watching Wilhemina be Dayshal’s biggest advocate when it came to her accessing an education and healthcare made me flashback to my Grandmother being with me through every doctor’s appointment and surgery, and making sure that I had the resources I needed for school.  For me, I know that the quality of life I was afforded as a child, though in poverty, and the opportunities I had, would not have been possible without the steadfastness of my Grandmother; just as I saw that Dayshal’s life would have been dramatically different without Wilhemina’s active and persistent involvement.  

The sacrifices and innate fight both of these women displayed unapologetically to their granddaughters was visible to everyone around them; everyone knew I was my Grandmother’s heart and joy, just as it was obvious that Dayshal is Wilhemina’s.  It is something about Black women who were born in impoverished upbringings during the Jim Crow era that gave them the kind of toughness, fierceness, and when needed, fearlessness, to handle the uncertainties of life; in this case, the life outcomes of the granddaughters they raised as their own.  

Dayshal:  A Young Advocate in the Making With a Powerfully Beautiful Spirit

Watching Dayshal’s journey unfold over the course of the film made me want to reach out and hug the young Sista.  To be Black with a lifelong condition in South Carolina is something I know firsthand.  What tore me apart, emotionally, was the cruel bullying Dayshal endured that caused her to spiral into medicating herself with substances, and neglecting her health.  It broke my heart to see her confidence shattered when she was bullied on social media, and her not knowing how to respond to the cruelness of her peers about her disease.  

Dayshal reminded me of myself; though I never was bullied in high school, I remembered always worrying how others viewed me as a disabled person, and feeling different.  Being a teenager with a disability or chronic condition is hard; you feel so isolated because there are not many people your age you can connect with.  That kind of loneliness, on top of being bullied as Dayshal experienced, can provide a pathway for the kind of depression, anger, and self-destruction that Dayshal slowly began to enter.  

However, what gives me great hope about Dayshal was the softening of the pain she carried when she was able to be amongst other women living with HIV/AIDS, and found her voice again to combat bullies.  Dayshal, like myself and countless others, is an innate fighter, and to see her spirit slowly reemerge to fight for her rights and to stand up for herself was what I had hoped to see.  Dayshal is a beautiful, intelligent young advocate in the making; her voice is greatly needed within advocacy work, and for Black women like us who live with disabilities and chronic conditions.  My wish is that Dayshal will continue to build her own “disabled Sistagirl” network of Black women living with HIV/AIDS, and other advocates because Black women’s voices are ardently needed within this work.  To see the turnaround in Dayshal excited me deeply because it is people like her that propelled me to create my own advocacy space – we have to uplift our disabled Sisters who want to share their stories and make not only their lives better, but impact the world significantly with their activism and determination.  Without a shadow of a doubt, Dayshal is a leader, and will do immensely well as an advocate; she just has to believe in herself, her voice, and demand to receive everything she rightly deserves.  

Final Thoughts

The HIV/AIDS epidemic in South Carolina is underreported and grossly undiscussed.  The lives of African Americans living with HIV/AIDS, or at risk of infection, cannot be ignored by our state politicians, or be left to die in our communities from not accessing imperative health resources.  HIV/AIDS is still a death sentence for Blacks in rural South Carolina; what is putting our lives in danger is not the disease itself (we have the medical advances to prolong living with the virus) – it is the man-made barriers to obtaining and retaining supports and resources, education, and political proaction from those with power.  All of these obstacles can be easily extinguished by our Governor and state legislators taking a stance to declare that the healthcare statuses of ALL South Carolinians matter; not just those who live in city/urban areas, are white, or have the financial wherewithal to afford adequate healthcare.  

To learn more about the HIV/AIDS crisis in South Carolina, click the following hyperlinks to educate yourself further, and brainstorm how we can make South Carolina truly see better days for our residents:  

PBS – African Americans Hit Hardest By HIV in the South
CDC – South Carolina – 2015 State Health Profile
SC DHEC – HIV, AIDS, and STD Data and Reports
AIDS Vu – South Carolina HIV/AIDS Statistics & Figures
Beyond AIDS – HIV Increasingly Infects Black Women in SC

(Featured headlining image:  Courtesy of ShutterStock.)

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