Disability, Normalization, and Accommodation — My DNA Journey
Ever since I was diagnosed with Charcot-Marie-Tooth disease (CMT) — a neurological disease 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, so if I wanted to go anywhere, I would need someone to push me. Then, in 2011, I went to the University of California, Los Angeles for a Master’s degree in international education. While I was 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 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 when buildings or buses lacked things like handicap-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, China has fallen into the latter category. I will never forget my experience on China’s college entrance exam. This was back in 2007, and my application for a disability accommodation was rejected. CMT has attacked the muscles in my hands, causing severe muscular degeneration. I can still write, but only very slowly. The test officials told me there was no precedent for handling cases such as mine, and that if I wanted to take the entrance exam, I would have to take it like everyone else. So I took the exam, and when it was over, I handed in my unfinished exam booklet. I managed to pass, but had to go to a much lower ranked university than I would have otherwise.
Afterwards, I took my story to a number of local media outlets, not to demand a do-over or special treatment, but to press for the creation of a more equitable educational environment for China’s disabled student population. The government did nothing.
This lack of response hardly came as a surprise. In China, the disabled community has long lived out of sight — not because of any centrally coordinated campaign against us, but simply 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 disabled persons in China, yet even in the country’s bigger cities, it is hard to find handicap-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. 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 they should be unable to enjoy their country’s history and natural beauty. My goal is to help local travel-oriented businesses import handicap-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. 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 handicap-accessible facilities, though — given how small and inexpensive it was — my expectations were low on that front.
But when I arrived, I was stunned. The handicap facilities at this tiny B&B were better than at any five-star hotel I had ever stayed in. The key to handicap-accessibility lies in the details. It’s not enough to install showers and bathtubs capable of accommodating wheelchairs, business owners also have to consider minor upgrades like removable handrails.
Curious, I asked my hostess why she had gone to such lengths to make her small establishment so accessible to handicapped guests. She told me that she had lived in Ireland and Germany for many years. In those countries, handicap-accessible features are the norm, and she wanted to implement them in her own B&B. At the same time, she also saw it as a chance to attract more customers. Making her home accessible had helped her to expand her client base and grow her business.
Globally, many developed countries are experiencing rapid population aging and a consequent rise in the number of people with disabilities. Some of the first handicap accessible tourism infrastructure in Belgium dates back to the late 1990s, for example, when it was built to help accommodate veterans of World War I as they returned to the battlefields of their youth. 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 handicap accommodations if they want access to this potentially huge market. Thanks to government grants, many are upgrading their facilities and redesigning their floor plans to be more accessible.
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 handicap-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. As a Chinese citizen, it is disappointing that in China, I can hardly go anywhere because of my condition, but as soon as I go abroad, I feel like I have the whole world at my feet. Even minor accommodations can help people with disabilities lead fuller, more enjoyable lives and allow them to participate in a wide variety of previously inaccessible activities, including swimming, skiing, and skydiving.
If this change is to be affected, the government must take a more active role than it has so far. In Europe, businesses can apply for grants to help build accessible facilities, and there are regulations in place to ensure all citizens have equal access to public infrastructure.
Ultimately, however, I think the market may have to solve this problem on its own. As China’s population ages, the number of persons with disabilities is expected to grow as well. Like the Czech host who renovated her B&B in preparation for similar demographic trends in Europe, Chinese business owners will respond to financial incentives, even in the absence of legal requirements. Key to this, however, will be raising awareness of this impending shift. Chinese businesses and officials must stop looking at disability accommodations as burdensome acts of charity, but as good business and smart policy. To this end, I am trying to organize handicap-accessible group tours. Just like anyone else, those of us with disabilities are consumers, and our pocketbooks give us a powerful platform to demand change.
With the vision in my mind, I reached out to European Network for Accessible Tourism (ENAT) and tried to persuade Mr. Ivor Ambrose, the co-founder of ENAT, to be my partner in promoting accessible tourism in China. I have been in touch with him for 2 years before we met personally. After listening to my plan, he decided to support me to accomplish my goals in China.
In May 2018, with ENAT’s support, I was selected by Booking Cares Fund as the Changemaker in sustainable tourism and was awarded a seed grant to launch my own project — Rare & Roll, a startup focused on disability and accessibility in the tourism industry. Over the past few months, we have organized various events to connect with different stakeholders and are scaling up our social impact.
As a rising entrepreneur, I am interested in applying for the Toptal Scholarship Program first because I feel even after completion of my graduate studies in international affairs, I still have an urgent need to further my education in business management, data analysis, and technology, so as to cope with the ever-changing environment of market. Thus, I want to use the scholarship to attend online courses related to the practical skills I would need in my career.
Secondly, during my journey of entrepreneurship, I hope to be accompanied by an experienced expert, that is a mentor, who could provide me with constructive advice in building a sustainable business model in the service sector and support me in the course of growing my business. I am still a newcomer in the industry and there is a lot of stuff I need to learn. In addition to learning from books and courses, I desperately want to learn from people at the same time. I believe that with the support from Toptal, I am both able to grow my skills and to expand my own professional network, locally and globally.
Personally, I am interested in Toptal also because I used to benefit from a platform like it. There was a time when I got rejected by all the employers I contacted due to my disability, I successfully landed a job on a freelancing platform. I began my career as a freelance translator/writer, and then I had the opportunity to officially write for some famous media outlets like Vice. For me, this is a life-changing experience because it helps me surpass prevailing barriers in the job market for people with disabilities, and offers me the very first employment opportunity to build my qualifications.
Last year, a decade after my failed attempt to apply for an accommodation on the college entrance exam, I saw a piece of news 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. In less than 10 years, something that I once thought impossible became real.
If this could become real, I believe it is not far away from realizing my dream of building a more accessible China.