Bridgeport artist brings attention to sickle cell disease

Mr. Nobody Cares is a character created by Bridgeport artist Hertz Nazaire, seen here in his studio. It is just one way that Nazaire works to rile up the apathy he sees when it comes to searching for better treatments and a cure for sickle cell disease, of which he suffers. less Mr. Nobody Cares is a character created by Bridgeport artist Hertz Nazaire, seen here in his studio. It is just one way that Nazaire works to rile up the apathy he sees when it comes to searching for better ... more Photo: Contributed Photo Photo: Contributed Photo Image 1 of / 23 Caption Close Bridgeport artist brings attention to sickle cell disease 1 / 23 Back to Gallery

“Mr. Nobody Cares” is in the corner, waiting for the moment he will be plucked up and placed atop the head of Bridgeport artist Hertz “Naz” Nazaire. It might not be for a while, or perhaps it will be in a few days, but the reaction is likely to be as arbitrary, if past experiences are any indication.

“I never really plan it,” says Nazaire on a recent afternoon, as he picks up a cardboard box that has been fashioned as a mask, with a cartoon expression rendered in black marker. “It’s just to get my mind off things, when the flow of what I want to do is there, but I don’t have the resources, ability or energy to complete it.”

Perhaps he will walk city streets, hop on a bus or attend an art opening. “I get the strangest reactions. Some people want to take selfies with me; some don’t pay any attention. It is as if I am invisible.”

Nazaire is a performance and visual artist whose message is as much about his art as it is about the causes that are dear to him. “Mr. Nobody Cares,” as he explains it, is the visual expression of the hype and celebrity culture that can overshadow real talent and inspired work. It also represents his realization that the worth of one’s life’s work is entirely subjective, whether praised or panned, the true value lies in the motivations of its creator. Spend some time with Nazaire, and it is clear his drive is a fervent hope that through his work he can make others care and spur them to act.

He does that through black canvases of bright, tropical scenes drawn from his Haitian childhood; his Haitian Superflat series (an amalgamation of his heritage and a Japanese art movement); and images that reveal the internal struggle he faces every day.

“My ultimate goal is to get awareness. What I want to be is a positive image of someone struggling with sickle cell anemia, who believes it is OK to talk about it and fight it publicly,” he says. “If I had the influence of (singer) T-Boz or (actor) Larenz Tate, I’d talk about it 24/7, until people got tired of me. The cure is within reach, but people are not pushing for it.”

He is frustrated at what he sees as the apathy and lack of compassion toward the disorder that he, T-Boz and Tate, as well as millions of others around the world and some 100,000 Americans, inherited at birth — sickle cell disease. Nazaire channels that vexation into his character creation, which has his own Twitter feed (@NobodyCares1910), as well as the art he creates on canvas.

Some of his friends worry about his daily struggles of surviving, let alone making a living as an artist (he is on disability), and suggest that canvases full of swirling red blood cells and mutated, crescent-shaped ones might not be as coveted as the works that attracted collectors and creators early on in his career — the colorful scenes of the life and people of Haiti, where he was born. But, as he is in his 43rd year with the disease, he finds it difficult not to reference it or a desire for a cure.

“I can’t stop painting about sickle cell, because no one else is talking about it,” says Nazaire, who must get nearly monthly transfusions of blood to counteract the disease’s effects.

His latest works are “Tapestry of Pain,” altered recreations of his first sickle cell series he created 19 years ago, after the condition put him in Bridgeport Hospital for two weeks.

“Sickle cell can be cured. I want to use my work as a platform, to be a voice for those suffering from this disease,” he says.

Natural curiosity and a desire to find a cure have created a personal repository of knowledge that can enlighten a visitor to his studio, as surely as he hopes to elucidate the masses. The disease is one of genetic mutation in the hemoglobin, the protein that carries oxygen in red blood cells. It makes Nazaire have cells that look like sickles, or crescents, which block the vessels and prevent oxygen from getting to organs and tissues. Not only does this cause damage, but sufferers also can experience mild to severe and chronic pain, fatigue and infection.

Nazaire nearly died from it and lost vision in his right eye because of it. Sickle cell can shorten one’s life expectancy by 30 years. “Death is always in the back of my head,” he says.

There is hope on the horizon. Nazaire is most excited about a new gene-editing technology, known as CRISPR-Cas9, which has shown promise in correcting the mutation during tests on stem cells. It spurred him to climb out of the depression into which he was descending and launch an online crowdfunding request on Patreon.

He is hoping for funds to create work to auction off for sickle cell disease research. He lays out the goals of his #Art4Cure initiative.

“I want to use my art to make a better life for myself, a life with a louder voice that allows me the ability to do much more in my sickle cell advocacy work,” he says. “This is a story of how art cured a disease; you can help me tell it.”

chennessy@hearstmediact.com;

Twitter: @xtinahennessy