Putting yourself out there

Different stories

Every SMA case is unique, with varying degrees of mobility. Some patients can walk with assistance, while others struggle to sit upright in a wheelchair for more than three hours. Their environments also vary, and the experiences of people with SMA differ significantly.

Zeng Jiahui, 27, hails from Guangzhou, Guangdong province. She started showing symptoms of SMA at eight months old, received a preliminary diagnosis at the age of two, and was officially diagnosed at four. As a child, she never considered herself "disabled" until she faced rejection and was shuffled between kindergartens due to concerns people had about taking responsibility if she fell.

"Later, when I was applying for elementary school, I was afraid of being rejected again," Zeng confessed. Fortunately, the interview went well. She recalls narrating a flawless rendition of Cinderella, and the school principal kindly said to her, "You're a very expressive girl, and I have every belief that you would be a wonderful addition to our school. We look forward to seeing you on Sept 1." That was her initial experience with inclusiveness beyond her family circle and it instilled in her a newfound sense of confidence.

After Zeng entered high school, her school built its first accessible restroom, which was a significant step toward inclusivity. Her teacher told her that her presence had prompted this essential change. Zeng realized that venturing into the world not only benefited her but also those who would come after her.

For Gong, however, change at school didn't come as swiftly. Like Zeng, he pursued higher education up to a master's degree, but he had to adapt to an environment that wasn't very accessible. In middle school, he had to move to a different floor for the new school year due to his condition, which meant saying goodbye to his previous classmates. "We got along so well; it was such a pity," Gong said.

Then, in college, most of his classes were held in older buildings without accessibility ramps. In the face of these challenges, Gong displayed a common trait among SMA patients: fearlessness. "There are certainly challenges, but there are always solutions," he said.

Zeng considers herself fortunate, not only because her physical condition is not that serious, allowing her to venture outside and even travel, but, more importantly, because her parents genuinely believe that she can create an extraordinary future just like any healthy person. They have actively provided opportunities for her to explore the world, from walking around different subway stations with her to taking her to countries with more advanced accessible facilities.

"When we visited Melbourne, I saw an Australian girl in a wheelchair making her way through a tulip field by herself," Zeng recalled. "It made me think that perhaps one day I could travel independently too."

Xu grew up in the rural area of Cangzhou, Hebei province. "Where I'm from, many people, including my parents, tend to believe that as long as disabled people are well-fed and bathed, that's good enough for them."

Xu enjoyed being around people, especially at school. Before his freshman year of high school, he could climb stairs with assistance from his classmates. However, he didn't want to be a burden to anyone.

"I closely regulated my use of the bathroom and ate simple lunches instead of going to the cafeteria," Xu explained. Sometimes he wondered if there could have been a way to ask for help and still maintain some level of independence.