Putting yourself out there

Things are looking brighter

Lv Ying, born in the 70s, was one of the first identified SMA patients in China. However, it was only a few years ago that she received an official diagnosis. Much like Xu, the people around her had minimal expectations for her future beyond mere survival. However, being a natural rebel, she refused to let others dictate her life's potential.

Self-taught by reading books and textbooks passed down by her sister, she visited many cities, including Xi'an and Chengdu, and she even opened a hotline for young people in need of someone to talk to.

Lv feels that today is a great time for SMA patients. A decade or two ago, most patients' families relied on personal vehicles for daily commutes and travel, and accessible facilities in public transportation were rare or nonexistent. "In the past, the first thing I had to do in each city was buy a map. But now there are high-speed railways and navigation apps," she said. "Also, thanks to the law, services have improved significantly. Every step of the way, railway staff usually ask if I need any assistance." 

Sun Haonan, 21, was one of Xu's companions during their trip to Qingdao. They had previously been on various outings with their families. But during the Qingdao trip, they decided to take charge, allowing their parents to enjoy the visit without worries. It was also a way for them to prove themselves.

"Given my condition, my parents used to not understand why I was so determined to go out. But now, my dad proudly shares stories of my little adventures," Xu said.

Being an SMA patient is just one facet of their identity, as Zeng believes. "If our physical disadvantages are compensated for, like with glasses for those who need them to see better, we have our strengths and can achieve many things. Some need glasses to see and we just need wheelchairs to move around."

Zeng is currently pursuing a doctoral degree in user research, a branch of public policy, in Japan.

Xing pointed out that sometimes the best way to promote change in terms of accessibility is for people with disabilities to put themselves out there, to be seen by society.

Leaving their homes marks the initial step toward fuller participation in society. While the first move can be the most challenging, it doesn't necessarily require going to another city or country. Even a trip to the local grocery store or library can serve as the catalyst for change. The SMA Community Travel Guide is designed not only for traveling but also for assistance with using public transportation and gaining mobility independence at home.

Two medications for promoting the survival of motor neurons are now covered by Chinese medical insurance. According to Xing, experts estimate that there are about 30,000 SMA patients in China, but only around 5,000 are receiving the medications. These drugs slow down the deterioration of motor neurons, thereby improving the patients' quality of life. "The more people know about this disease, the more we can diagnose. It only requires a simple genetic test."

Xu and his travel mates named their trip to Qingdao "Light Chaser". "I hope they're not just chasing the light but also becoming the light in their own lives," Gong said.