Racial Equity

How Can Art Help Destigmatize Bias Around HIV/AIDS?

Artist Carmelle Beaugelin with art. Photo courtesy of Beaugelin

Artist Carmelle Beaugelin with art. Photo courtesy of Beaugelin

Carmelle Beaugelin has always found solace in art.

A Haitian American multidisciplinary artist based in Princeton, New Jersey, Beaugelin found inspiration in her Afro-Latin Caribbean household, her Pentecostal Christian spirituality, and the diverse cuisines, languages, and communities she grew up with. But it wasn’t until her mother’s death in 2016 that Beaugelin began pursuing art as a way to tell stories about the people she loved.

By April 2016, Beaugelin moved half of her art supplies into a hospice room at Villa Maria Nursing Center in Miami, where her mother was receiving care during her last days with stage four colon cancer. Beaugelin realized they had never created art together and she wanted to capture their last moments. So, she got to work: She covered her sleeping mother’s hands in paint, gently pressing them on a canvas. In the days following her mother’s death, between funeral plannings and church services, Beaugelin found peace in creating the canvas art – she added splashes of color, mod podge, and broken pieces of her mother’s jewelry.

She wanted to display it at the funeral service, but on the day of, overcome with grief, she threw it away.

“It took me days to realize what I had done. I was devastated,” Beaugelin says. “What I learned is that sometimes what you create is not necessarily about how beautiful it is, or how marketable it is, or how much money you can make off it. Sometimes the value of what you make, no matter what it is, finds its value in who you’re making it with.”

She pauses to add, “All that to say, maybe part of my life leaning into art has been like a pursuit of trying to recreate this piece that I lost.”

Today, Beaugelin is the Founder and Lead Curating Artist at BeauFolio in New Jersey, and also holds a Master of Divinity from Princeton Theological Seminary.

In conversation with Interfaith America Magazine’s Silma Suba, Beaugelin discusses how her grief affected her faith and her art, and she describes a special project she’s working on for National Black HIV/AIDS Awareness Day as an Interfaith America artist-in-residence.

Silma Suba: How do you define your work as an artist?

Carmelle Beaugelin: I am a visual artist mostly using the mediums of painting. Some people have described my style as abstract impressionism, and expressionism, but I dabble in different forms. I do that through BeauFolio Studio, which is my business, an emerging art house at the intersection of sacred art, human centered design, and restorative equity.

What that means, in addition to my art practice and creation, is that I work with a lot of congregations and organizations serving congregations. I’ve had an opportunity to do some art workshops with grant organizations, and then some art residencies with churches. Most of that stems from this realization that most of our art throughout history stemmed out of our religious spaces, and the way that our religious spaces have been set up now is that they’ve actually pushed out the artists for all kinds of reasons. So, what does it look like to rebuild a healthy relationship again between the artist and the congregation? That’s what I am interested in.

SS: Why are you interested in creating art as a tool to raise awareness around HIV/AIDS?

CB: My first experience or exposure to HIV/AIDS, and the conversation around that, was particularly like an ethnic-based experience. So being a child of Haitian immigrants, we came over in the 90s, and there was a huge stigma around being Haitian. Because there were conversations around Haitians being the cause of bringing AIDS to the US, and a lot of that was rooted in some of the similar homophobic perspectives of HIV/AIDS all over the country. It was also rooted within these xenophobic racist ideologies based on this inherent belief that if you’re “other” in some kind of way, whether it’s in your sexuality, your country of origin or your race, you may be carrying it.

I didn’t know anyone particularly affected in my family, but my father was a medicine man of the family. He would make a lot of teas and a lot of different concoctions for those who needed help navigating some of the side effects and illnesses that people were dealing with as a result of HIV/AIDS.

He was mindful, he was careful. But he wasn’t afraid like so many people at that time were. In fact, I didn’t even know that he was even interacting with anyone that has AIDS until so many years later. For me, it was just a story of human dignity, especially in regard to invisible illnesses. I’m thinking about a lot of my friends who have autoimmune conditions of all kinds. And whether it’s like lupus or fibromyalgia, Crohn’s disease, these are all invisible illnesses that you don’t really know about unless there is some sort of check of status. And so being drawn to this issue arises from my roots in the Haitian community, it is something that I felt affected my community very deeply and the disproportionate way that it affects people of color, particularly black men, and particularly those who are at various intersections in their identity.

SS: Does your faith play a role in your decision to create art around HIV/AIDS?

CB: As a Christian, I think that there has been a lot of harm that those of us who are in more religious spaces sometimes have towards those who are suffering from illnesses like this, especially if their illnesses are connected to intimate connections. We have not treated folks like that well. So, to be in religious spaces with folks that are seeking to raise awareness, particularly in the space of AIDS conversations, particularly with HBCUs, it just is so niche that I have to be part of this, I have to contribute what I can, visually, at least.

Specifically, within Christian religion, so much of our faith is very gory. We don’t talk about that. Western Christianity sanitizes it, it takes it away from the Eastern context a lot. But it’s an Eastern religion based on the gore of a man, who many would argue is divine, who lived an exemplary life, and died a sacrificial scapegoat to death. And we have mystified this man’s blood as central to our faith. Let’s be honest and think critically about this. For a faith that is so blood centric, which is the case with many faiths, how can we not talk about and be involved and think theologically about this condition that is so entangled in this idea of blood and the status of your blood and the sharing of the blood or withholding of blood.

SS: What’s your project about?

CB: So, 10 HBCUs have been awarded Interfaith HIV and AIDS Capacity Building Grants, in order to create programs that raise awareness and demystify and destigmatize HIV/AIDS in the community. And they’re working alongside congregations, religious entities, students, of course at HBCUs, to make these things happen.

My task as an artist-in-residence for this particular grant cycle is to create art that reflects the projects that they’re creating, and the heart behind what it is. There are a lot of informational sessions on destigmatizing the conversation around testing. And my goal, as part of my process, is to not just know what projects that they’re doing, but also to get personal stories of individuals. I’m interested in trying to figure out okay, what is it? Why are you doing this? We all come with our biases about it. We all come with our own unconscious assumptions to the table. And it is through human interaction in these projects that those biases get stripped away. So, I’m trying to see how I can capture that stripping away of the bias.

Hopefully, the art will not just reflect the projects, but also for those who are viewing and interacting with the art, it kind of asks questions of themselves as well. Am I simply a viewer? Am I a participator? What is my story? You may think, I don’t have a story connected to this issue. We kind of all do. It’s really like, how are we connected to this cause? How are we connected to the story of HIV and AIDS in America, particularly at whatever intersection we sit at? Supporting the storytelling of these projects by these and finding a way to engage a wider audience visually, in being participants in this story, is what I am interested in.

“Sometimes the value of what you make, no matter what it is, finds its value in who you’re making it with.”

SS: What do you want people to walk away with after seeing your art?

CB: My hope is that when someone looks at these pieces, they don’t just say, “Oh, well, I don’t know anyone who’s impacted by HIV/AIDS.” I hope it will move them to ask: Do I know anyone who has a chronic illness and who needs my support? Even if it’s not this particular cause, or disease, I hope they are moved to compassion to do their small part in supporting others.

I think that it’s important for us to have this conversation because we have officially reached the place in our history where not saying anything is actually contributing to the problem. When it comes to supporting family, like we often rally around family members with cancer, that level of support is needed for people fighting invisible illnesses too. Imagine that kind of rallying around those who are affected by HIV/AIDS and what kind of impact that would have on those who may be silently struggling and are afraid to share.

All of us, particularly those who are part of minoritized communities who have been affected by any kind of illness, who know the compassion that is required to survive beyond just the diagnosis, I think it is our duty to really care for each other in that way.

SS: How does your faith inspire you to create art?

CB: The unexpected loss of my mother was such a challenging moment for my faith. I had to really put death in the forefront in a way that I never really had to do before. Growing up, particularly as a Pentecostal, I’d look at all the challenges around me and think: What does this all mean? Like, what does it mean if you prayed but your prayers don’t seem to get answered? There are so many layers to it, and it’s gotten me to where I am today. I am still figuring things out, but there’s more structure to it.

And a part of it is that after my mother passed, I had an existential crisis realizing that I could do whatever I want to with my life. My mother was the least demanding person in my life, but as an immigrant child, I had that one-track American dream plan to go to college, become a professor, get tenure, and so on – but after she passed, I realized she’d want me to explore whatever I want to.  So, I finessed my professors into letting me shorten my final papers and submit an art piece. That same year, I sold my first ever artwork.

When I think about my theology, and the things I believe, I believe there are moments when there are visitations … whether someone coming physically or spiritually, or as echoes of the impact that they had in my life, but without a doubt, whenever I have tried to move away from art, something keeps redirecting me to it.

SS: Did the unexpected loss of your mother affect your faith?  

CB: During summer 2015, like July, I went to therapy for the first time. Because Caribbean people and therapy, right? I was trying to make a big decision about whether or not I should pursue Clinical Pastoral Education, which you would do at a hospital or a psych ward. The counselor asked me, “Why are you interested in doing it?” And I said, up to that point, I didn’t know anyone close to me that had died. By the time I do go to someone’s funeral, it’s either a family friend I haven’t spoken to in years, or someone I am not really that connected to. So, I had like this distance to death. And I told her that because I had never dealt with death, when that would happen [in my family], in like 10 or 15 years or more, I would lose my mind. I would lose my mind.  

Next month, in August, my mother was diagnosed. You’re in a little bit kind of in denial about what’s happening, in the processing of it. By the time I got to the other side, I didn’t know if I would still be a Christian. I didn’t know if I would still believe in God. But then I was reminded of this Bible story, where Jesus is giving this sermon and is saying some really controversial stuff, and the crowd listening is like this guy is out of his mind. So, they start walking away, they start leaving him, and the only people that are left behind are some of the disciples. Jesus turns to them and says, “So, you’re leaving too?” And they say, you’ve the words of eternal life, where else will we go? That’s how I felt at that point in my life – where else am I gonna go? So, my prayers went from being kind of generic to more direct – like I was talking to a person now – and I said [to God] “you have absolutely disappointed me, and I am going nowhere. If you can’t’ fix this, fix me. I am going to tell you exactly how I feel about what you did to me.”  

In a weird way, it transformed my faith journey in a way that made it a lot more open. Possibly because I am from the Caribbean, we have Caribbean spiritualities that are like non-Western Christianity that’s influenced the way I practice it. There are so many things that are my unique way of being Christian, and I have opened myself to all of it. 

You can follow Beaugelin’s artwork process on her website  www.carmellebeaugelin.com and on Instagram @beaufoliostudio.