ATLANTA, Ga. (WRBL) — Jessica Blinkhorn is an artist and advocate for LGBTQ+, aging and disabled communities. The Georgia-based artist has been affected by the genetic neuromuscular disease spinal muscular atrophy (SMA) since she was a toddler.
In recognition of August being SMA Awareness Month, Blinkhorn discussed her experience living with the disease, how the pandemic impacted the disability community and treatment advocacy.
“When you’re a child, you’re just happy to be alive,” Blinkhorn said. “When you’re an adult, you’re happy to be alive but you realize the many stressors that being in a disabled body leads to.”
The artist and advocate said SMA “really has defined my [her] life.” Although neither of Blinkhorn’s parents had SMA, they were carriers of the disease which impacted all three of their children. Blinkhorn’s older sister and younger brother both had type 1 SMA. Blinkhorn was diagnosed with type 2 SMA in her late 30s, although she was treated for type 1 SMA until that point.
“It’s different when you have siblings that share something that is exclusive to you,” said Blinkhorn. She remembered being known as the “Blinkhorn Three,” the “Wheelchair Kids” and more. Blinkhorn said having siblings to talk about this with helped them better acclimate to their situations.
She continued, “When my sister and my brother passed, I lost a huge part of my identity.”
Blinkhorn’s brother JB passed on July 5, 2008 and her sister also named Jessica passed on Aug. 5, 2012.
Today, Blinkhorn explained, part of her goal as a disability advocate and performance artist is to show community members, especially children, what it is like to be living with a disability. She said oftentimes people do not know how to interact with people who have disabilities because of a lack of understanding. She hopes to change that.
In Sept. 2019, Blinkhorn did a performance in Taos, N.M. She surveyed audience members about their hopes and fears, combined them with her own and created a sound piece based on that information. The audio played in the background as she transferred herself from her wheelchair to a hospital bed under the glow of a streetlight.
After, she allowed guests of all ages to interact with her in whatever way they felt comfortable.
“The children were just like crazy about the performance,” said Blinkhorn. She continued, “They all wanted to touch my and hands or touch my feet or asked me what happened.”
According to Blinkhorn, the parents of the children were grateful for the opportunity. Many, she said, came up to thank her after the performance “because [they said they] never know how to answer these questions for [their] kids.”
In the midst of the COVID-19 pandemic, Blinkhorn realized she wanted to keep the conversation going through her performance art. She said the pandemic and issues many people with disabilities faced as a result, served as a wake-up call for the community.
Blinkhorn reflected on her own experience, sharing the pandemic impacted her medication with Spinraza, which she had been on since 2016. Blinkhorn had to stop treatment because the medicine was administered in-hospital with a lumbar puncture that became increasingly difficult to schedule. Off Spinraza, the artist lost the ability to swallow and lost 60 pounds within the next year as a result. She was able to restart treatment with Evrysdi in March 2021 and regained the ability to swallow. Her passion to continue the treatment conversation continued.
“A lot of individuals with disabilities rose from the ashes so the pandemic through social media platforms and I was one of those people,” said Blinkhorn. She added, “I no longer wanted to paint pretty pictures, I wanted to make a difference.”
It was treatment which motivated Blinkhorn to quit smoking cold turkey in 2016 after several failed attempts. She said it would have been a “slap in the face” to her brother and sister to start medication without showing care for her health.
“This treatment does matter. This treatment has redefined what it means to live,” said Blinkhorn. “What was perceived as an incurable disease is now a treatable one.”
Blinkhorn will next present her work the Good News Arts gallery in High Springs, Florida at the end of September.