Ever since I was diagnosed with Charcot-Marie-Tooth disease — a neurological condition that can cause muscular degeneration — my life has been defined by one word: accommodation.
I used to believe that my CMT diagnosis meant I could never live an independent life. My hands were not strong enough for me to push my own wheelchair, meaning that I needed someone to assist me if I wanted to go anywhere. Then, in 2011, I spent a year at the University of California, Los Angeles studying for my master’s degree in international education. While there, the university offered me the use of an electric wheelchair. That first afternoon was life-changing; I felt liberated and energized, and I realized that with just a little assistance and a few accommodations, I could live my life far more freely than I had ever thought possible.
At the same time, however, my newfound independence left me hyperaware of what had previously seemed like minor problems and gaps in accessibility. Before, when going anywhere on my own seemed impossible, I barely noticed or cared when buildings and buses lacked things like handicapped-accessible ramps. But once I could move about on my own, it became glaringly obvious which places had spent the time and resources to accommodate people with disabilities and which had not.
For a long time, most of China has fallen into the latter category. I will never forget how, in 2007, my disability accommodation request for China’s college entrance exam was rejected. CMT has attacked the muscles in my hands, causing severe muscular degeneration. I can still write, but only very slowly. Yet test officials told me there was no precedent for handling cases such as mine; if I wanted to take the exam, I would have to do so like everyone else. So I took it. I managed to pass, but I had to go to a much lower-ranked university than I might have otherwise.
Afterward, I shared my story with a number of local media outlets — not to demand special treatment or a do-over, but simply to press for the creation of a more equitable educational environment for China’s disabled student population. The response from test officials was silence.
This was hardly surprising. In China, the disabled community has long lived out of sight. But this is not because of any centrally coordinated campaign; rather, it is because we have nowhere to go, and many in power find it easier not to think about us. According to government statistics, there are 85 million people with disabilities in China, yet even in the country’s bigger cities it is hard to find handicapped-accessible buildings, buses, and parks. This is why, despite real gains in recent years — the growth of the internet economy has given many previously unemployed people with disabilities access to job opportunities and decent incomes — it is still rare to see us on China’s streets, much less traveling or taking in one of China’s multitude of historic and natural wonders.
It’s a state of affairs I’m determined to change. Earlier this year, I launched Rare & Roll, a startup social enterprise focused on disability and accessibility in the tourism industry. In building a more accessible China, we have to start from somewhere, and I chose to start with tourism. Just because a person has a disability does not mean that vacations should be out of reach. My goal is to help local travel-oriented businesses import handicapped-accessible facilities and philosophies into China, so that everyone can feel the same sense of freedom and mobility I did the first day I got my electric wheelchair.
While I talk often about how that experience opened my eyes, it wasn’t until my first trip to Europe that I truly committed to my present course of activism and social entrepreneurship. On a visit to the small town of Český Krumlov in the Czech Republic, I stayed at a locally run bed-and-breakfast, partly because it was cheap, but also because its website showed that it was equipped with handicapped-accessible facilities. Given how small and inexpensive it was, my expectations were nevertheless low on that front.
But when I arrived, I was stunned. The accessible facilities at this tiny B&B were better than at any five-star hotel I had ever stayed in. The key to accessibility lies in the details, and it was clear this humble B&B had paid careful attention to the little things. It’s not enough to install showers and bathtubs capable of accommodating wheelchairs. Business owners must also consider minor upgrades, like removable handrails.
Curious, I asked the hostess why she had gone to such lengths to make her small establishment so accessible to guests with disabilities. She told me that she had lived for many years in Ireland and Germany, where handicapped-accessible features are the norm, and thus she wanted to implement them in her own B&B. She also saw them as a way to attract more customers. Making her home accessible had helped her to draw in guests such as myself who otherwise might not have chosen her establishment.
Globally, many developed countries are experiencing rapid population aging and a consequent rise in the number of people with disabilities. According to interviews I conducted with European tourism officials over the past two years, business owners there are acutely aware of the need to provide disability accommodations if they want access to this potentially huge market. And thanks to government grants, many have been able to modernize their facilities and redesign their floor plans.
It’s worth noting that tourists aren’t the only beneficiaries of infrastructure upgrades. Prior to the 2008 Beijing Olympics, the city invested heavily in handicapped-accessible facilities at sites such as the Forbidden City. Originally designed to meet the needs of an influx of foreign tourists, today they can be enjoyed by all the city’s residents.
It’s time for the rest of China to follow suit. It is disappointing that I can hardly go anywhere in my own country because of my condition, but as soon as I go abroad, I feel like the whole world is open to me. Even minor accommodations can help people with disabilities lead fuller, more enjoyable lives by allowing them to participate in a wide variety of previously off-limits activities, including swimming, skiing, and skydiving.
If this change is to take place, the government must take a more active role than it has so far. Europe can serve as a model. Some European countries allow businesses to apply for grants to help build accessible facilities, and there are regulations in place to ensure all citizens have equal access to public infrastructure.
In China, however, the market may have to solve this problem on its own. As the country’s population ages, the number of people with disabilities is expected to grow here as well. Like the Czech hostess who renovated her B&B in recognition of similar demographic trends in Europe, Chinese business owners will respond to financial incentives, even in the absence of legal requirements. Key to this, though, will be raising awareness of this impending shift and getting people onboard. Chinese companies and officials must stop looking at disability accommodations as burdensome acts of charity and start seeing them as good business and smart policy. To this end, one of the tasks I’ve set for myself at Rare & Roll is to organize handicapped-accessible group tours. Just like anyone else, people with disabilities are consumers, and our pocketbooks give us powerful leverage to demand change.
Last year, a decade after my failed attempt to receive accommodation for the college entrance exam, I saw a news story that brought tears to my eyes. After a years-long campaign by the disabled community and disability advocates, the Ministry of Education finally issued regulations allowing for reasonable accommodations to be made for disabled students taking the college entrance exam. In less than 10 years, something that I had once thought impossible had become real. It was a landmark victory for disability rights in China, and it came about thanks to the tireless efforts of the entire disabled community.
If these rights are to be extended elsewhere, we will need to replicate this campaign again and again, until accommodations are no longer considered something special, but the norm. For too long, China’s disabled population has been relegated to the dark corners of society. It’s time we pushed our way into the light.
Translator: Matt Turner; editors: Lu Hua and Kilian O’Donnell.
(Header image: A wheelchair-accessible ramp test in Hangzhou, Zhejiang provinve, May 9, 2018. Long Wei/VCG)