"Can I help you?"or"Do you need anything?"Xu Yong,30,found himself frequently asked these questions as he made his way to Qingdao,Shandong province in September.
At times,the attention made him feel a bit self-conscious because he knew it didn't just come from Shandong people's renowned hospitality but also from the fact that Xu and his companions were traveling in wheelchairs.They have spinal muscular atrophy,or SMA.
This year,on Sept 1,the China Accessibility Construction Law came into effect.It was established to strengthen the creation of accessible environments,making access easier for disabled and elderly people,and promoting their comprehensive inclusion in society.
Simultaneously,a travel guide aimed at a specific group was taking shape.On Sept 29,also known as World Walking Day,the SMA Community Travel Guide was published.
This guide was initiated by the Meier Advocacy and Support Center for SMA,or Meier SMA.But everything,from its content to its art design,was the result of the collective efforts of SMA patients.
Gong Min,34,who also suffers from SMA,became a staff member at the Meier SMA in 2018.He explained,"In the initial stages,the center primarily focused on guiding younger patients through the diagnosis and medication search process,but it hadn't done much for adult patients."
However,that changed when the center began hosting small group discussions,and the topic that generated the most enthusiasm was travel."We hoped they wouldn't just think about traveling but would start believing that it's achievable for every SMA patient,"said Gong.
As a result,the center organized more discussions on this subject.Some shared their experiences with air travel and wheelchair check-ins,while others provided insights into techniques for assisted position movements,such as transitioning from bed to wheelchair.Many conducted extensive research on potential travel destinations.
Medical professionals might be able to talk for hours about SMA,but when it comes to real-life challenges and practical solutions,the patients themselves are the true experts.The SMA Community Travel Guide was born out of these passionate exchanges.
By medical definition,SMA is an autosomal recessive genetic disease.This genetic defect results in the absence of a specific type of protein,one that fuels motor neurons responsible for transmitting signals from the brain to muscle junctions.For SMA patients,the lack of this protein leads to the gradual deterioration,loss,and reduction of motor neurons,resulting in the weakening of limb muscles,as explained by Xing Huanping,executive director of the Meier SMA.
In 2014,the global Ice Bucket Challenge raised awareness for amyotrophic lateral sclerosis(ALS).During that period,similar awareness campaigns in China typically centered on five diseases,including ALS and SMA,often causing confusion between the two.
According to Xing,while ALS typically onsets later in life,usually between the ages of 30 to 50,80 percent of SMA patients begin exhibiting symptoms,such as delayed growth and weak limbs,before they turn two.
"I started using a wheelchair in high school,although I could walk a little with assistance before that,"Xu said."When I was young,my classmates called me'ducky'.They didn't see me as a disabled person but just a friend who walked in a unique way."
Despite SMA having been recognized for over 20 or 30 years,accurate diagnosis and affordable medication only became available in recent years.
Gong believes that,before the advent of medication,an accurate diagnosis merely provided a name for the condition he had been dealing with.
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.
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.
