The sound of wet tires echoed through the emptied halls of Herron School of Art and Design, as a single headlight illuminated in the distance. Graduate student Johnson Simon rode his motorized bike up to the entryway of his personal studio space provided to him by IUPUI. His hands, slightly contorted and warped, made unlocking the door difficult, but he entered nonetheless. The sterile, white walls of the room were decorated with dozens of paintings displaying the motion and movement Simon cannot perform himself.
Simon suffers from cerebral palsy, a condition defined as “a neurological disorder caused by a non-progressive brain injury or malformation that occurs while the child’s brain is under development.” (cerebralpalsy.org) CP affects the body in relation to motor skills, the use of muscles for everyday tasks. Limbs and even facial features painfully distort and tighten. Coordination is impaired, making everyday tasks such as walking and speaking become difficult.
Simon was born with his umbilical cord around his neck. He was only a few minutes away from extensive brain damage. The doctor told his mother to expect the worst. Simon noted, “I was supposed to be mentally retarded. I wasn’t ever supposed to walk. I walked by the age of 5 years old.”
He spent the first four years of his life in Haiti and could not attend preschool due to the lack of resources to accommodate someone with his condition. “I remember looking at my grandmother and saying ‘One day I’ll be able to go to school in the U.S.’”
However, after moving to the U.S. and joining school, Simon was relentlessly bullied by his peers. “I didn’t like who I was. It wasn’t until I discovered my art skills, until I opened my eyes.”
After getting a glance of his drawings, classmates wondered how he was able to draw despite his condition. For Simon, it came naturally. He expressed for someone with a disability, “discovering I could do something that no one can do, I was real motivated. It was like wow, I wasn’t a mistake. I was put on this earth for a reason.” His interest grew after he continued to draw and paint in physical therapy to counteract muscle tightness in his hands.
By the time Simon entered middle school, he met his mentor Michael Tischler. Similar to Simon’s story, Tischler worked through juvenile rheumatoid arthritis as an artist. With motivation from his mentor and a second place win in a school art competition, Simon said, “I knew art was a calling for me and something I wanted to discover and it really pushed me to keep on going.”
He started doing paintings about movement and motion. “I wanted to paint pictures that I see that my body’s not capable of doing, but I want to do it.” He stated he always wanted to be a dancer. “Of course I’m not able to do it physically, but in my head I can see me doing the movement and motion.”
Now in grad school, Simon believes IUPUI is a perfect fit for him. While attending a grad school fair in Chicago, he discussed his portfolio with representatives from IUPUI. The next day Simon received an email expressing how much they wanted Simon to apply to join Herron School of Art. There was a connection and acceptance for who he was, when other schools expressed they were not willing to assist students in Simon’s position.
Before his passing, Simon’s mentor always told him to “never, never give up,” Simon noted. “That quote and that mindset is what keeps me going when I’m down and depressed, when I have too much on my plate, that quote is what keeps me going.”
Looking forward, his dream is to continue his mentor’s legacy of motivating others by becoming a painting professor. “He took a kid that did not have no hope, that was on the edge of thinking about suicide, and turned him into an upbeat and motivated person.” Simon wants to mentor many young adults and “change the atmosphere” of how people look at disabled individuals.
The conversation ended with Simon picking up his paints to finish up his final piece of the fall semester. He tied the strings of his apron, picked up a brush and got right back to work, brushing in broad strokes across the canvas.