"Having lupus or any disability requires you to be bold and resilient,” shares Johnnie Jae (Otoe-Missouria and Choctaw), an artist and disability rights advocate. Johnnie has Lupus, an autoimmune disease that causes lifelong issues for those with the disorder. Sometimes called a “silent disease,” both because so little is known about the disorder and because those affected often don’t notice symptoms until the disease progresses, Johnnie is using her voice to talk about the disease, raising both awareness and funding for the Lupus community. In her Hope Floats Silk Scarf, Johnnie has combined art and activism in one beautiful accessory.
“I wanted to create a strong and elegant design to represent that boldness and resiliency needed to live with Lupus or another disability. I wanted it to demand attention, the way that those with Lupus and other disabilities have to demand to be seen and heard within the healthcare system,” says Johnnie.
Using bold shades of purple—the color of Lupus awareness campaigns and the Lupus Foundation—Johnnie’s scarf is impossible to ignore. Accented with a striking yellow, the design subtly incorporates butterflies. “The butterfly symbolizes one of the most physically recognizable symptoms of Lupus: a butterfly-shaped or malar rash that appears on the face,” shares Johnnie. “But there is also a deeper meaning because the butterfly symbolizes chaos and hope that comes with learning to manage and live with Lupus.”
“I think it's important for me to advocate for Lupus awareness, especially in the Native community, because Native people are ten times more likely to be diagnosed with Lupus and at younger ages than any other ethnic group. We also don't have ready access to the advanced and specialized care that Lupus patients need, so it tends to be more severe, and we have higher mortality rates,” says Johnnie. “I wanted to create this scarf to help raise awareness about the prevalence of Lupus in our Native communities and honor the strength and courage of those within our communities living with Lupus.
Eighth Generation is proud to share the work and advocacy of Johnnie Jae and bring awareness to Lupus. For more information on Lupus, visit the Lupus Foundation of America’s website at lupus.org. Read Johnnie's blog post on her journey with Lupus here. In honor of Lupus Awareness Month (May 2023), Eighth Generation and Johnnie Jae donated a portion of proceeds from our Hope Floats Silk Scarf to Jeffrey Veregee (S'Klallam) and his family. Jeffrey, a renowned artist himself, was recently diagnosed with Lupus and is currently fighting for his life against the disease. On Christmas Eve of last year, Jeffrey and his wife received a hospital bill for his most recent treatments: Jeffrey’s hospital bill is currently $3.75 million and counting.
35" x 35"/ 88.9cm x 88.9cm
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