DM Monitoring
SANYA: What can you say about a 22-year-old man in a wheelchair who parachutes in the air, dives in the sea and fights stereotypes surrounding people with disabilities? That he suffers an incurable rare disease and cannot bend his arms, neck and spine.
Fang Jianze, a student from Zhuhai College of Jilin University, was born with Emery-Dreifuss muscular dystrophy (EDMD), a rare muscle disease that slowly causes weakness in the shoulders, upper arms and calves.
He once thought his life would be no different from other wheelchair-bound people: being confined to a chair and looked after by others. Yet after he entered college, he found a way to break free from a life of stagnancy.
“People usually think those in wheelchairs are incompetent and sensitive. I want to break the stereotypes and change myself,” he said. “Physical disabilities affect the body not the mind. Those who have dreams can finally find the meaning of life.”
ALMOST DESTROYED, BUT UNDEFEATED
The disease previously drove Fang into a long bout of depression. He was unable to go to the restroom by himself so he seldom drank water in class.
“I felt as if I were a caged bird waiting to be fed,” he recalled. Fang lives in a single room in the college dormitory. In his freshman year, his uncle was responsible for taking care of his daily needs.
Fang’s biggest aspiration was to live alone. To achieve this dream, he bought an electric wheelchair with a motion camera. He often wandered around campus and recorded the defects of existing barrier-free facilities. He took pains to design the shortest barrier-free paths and handed his drawings to the school.
With the support of the college, he can live alone in the dormitory without relying on the help of others. The electric wheelchair can take him anywhere from the library to the classroom.
Under his suggestion, more than 20 barrier-free facilities in Guangzhou, a southern Chinese city where Fang lives, have been renovated over the past two years, allowing more wheelchair users to travel without obstacles.
Recently, Fang has been preparing for the postgraduate entrance examination in applied psychology.
“About 30 percent to 40 percent of patients with muscle diseases have a tendency toward depression. I know what it feels like. Psychology is what I’m interested in and I want to put what I learn into practice,” he said.
DREAM BIG, REACH FAR AND BREAK BOUNDARIES
Fang’s dream went far beyond campus life. Inspired by a film called “The Upside,” in which the paralyzed protagonist successfully paraglided, he decided to try the adventurous activity.
In June 2019, Fang succeeded in parachuting from a height of 4 km with flying colors. “In the sky, I felt I was no different from able-bodied men. Sometimes, I’m locked in the shell I made for myself. Escaping from this shell, I can feel happiness as well,” Fang said.
Last year, a news story about a man with a spinal cord injury going diving gave Fang a new goal to achieve.
After being given the all clear from doctors and professional instructors, Fang started his diving training. He could not bow his head to see the instrument console, and his lower legs and arms were too weak to move and keep balance in the water.
