PERSONAL NOTE: When I first arrived in the campus in China as a visiting professor, I saw a student with a wooden crutch…I was able to talk to him and I remember saying something like: there is no future for you in China if you are a disabled or handicapped person. He did not want my assistance at first, and slowly I was able to persuade him to have a prosthetic leg…so he could walk again with two legs…a long story, I wrote in my book THIS IS CHINA! He is now pursuing a phd in civil engineering in the Polytechnic University, Hong Kong…where recently we witnessed the terrible fights between students and the Hong Kong police! Anyway, things are getting better now for the disabled persons in China…peace, steve, usa December 9, 2019 firstname.lastname@example.org blog – https://getting2knowyou-china.com
Post Magazine / Long Reads
Disabled in China: why life is still a struggle in a society designed for the able-bodied
China has made great strides in its efforts to integrate those with disabilities, but the experiences of a Shenzhen couple show how much still needs to be done before they are accepted as active contributors to society
14 Sep, 2018 scmp
Li Hong woke up in a sweat one night this summer, breathing heavily and with his inflatable mattress – essential for preventing bedsores – slowly deflating beneath him. His breathing apparatus, which keeps air pumping through his lungs when he sleeps, had stopped working. Li pressed the emergency alarm, but it too failed. The power had been cut.
Li’s wife, Hu Ying, frantically called property man¬age¬¬ment, but no one answered. She went outside in her wheelchair, hoping to find an electrician, only to discover that the lift was not functioning. The blackout was affecting their entire Shenzhen neighbourhood.
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Unable to do much else, the couple closed their eyes and prayed, Li concentrating on inhaling and exhaling, and after two hours, mercifully, the electricity came back on. The breathing apparatus flickered back to life and the mattress rose, supporting his weight. It had been a close call.
Li had not been diagnosed until he was 17, in 1989. Before then, doctors at the hospital in his hometown of Xuzhou, in Jiangsu province, could not explain why he struggled with running and sports. One insisted that he was simply lazy and did not do enough exercise. It was only when Li’s father took him to a larger hospital, in Hangzhou, the capital of Zhejiang province, that they found a name for his condition. He was suffering from Becker muscular dystrophy, a rare disorder character¬ised by progressive muscle weakness of the legs and pelvis.
Now 46, Li has had many brushes with death. Once, he fell unconscious at home after suffering an ischemic stroke, and twice he has developed pulmonary oedema, caused by excess fluid in the lungs. After surviving a cardiogenic shock (when the heart suddenly cannot pump enough blood to meet the body’s needs) along with hyper¬kal¬emia (a dangerous level of potassium in the blood) in 2008, he was largely confined to his wheelchair. Another visit to intensive care last October left him bedridden.
Li and his wife, who lost her ability to walk from acute osteomyelitis (a type of bone infection) at the age of 13, are among at least 85 million people with disabilities in China. (The China Disabled Persons’ Federation [CDPF], a quasi-government organisation, projected that figure from the 2010 census, but experts and human-rights organisations estimate 200 million to be a more realistic number.)
In 2013, after an eight-year wait, Li and Hu moved into a public-housing flat in Shenzhen, which shields them from the city’s rapidly rising rents. Their wheel¬chairs, Li’s special bed and the modifications required to make their home wheelchair-accessible were all subsidised by the CDPF. Public health insurance covers most of the cost of Li’s hospital stays and part of his monthly 1,000-yuan (US$146) medication fee, although certain imported drugs are not covered and for those he must pay out of his own pocket.
Hu, who is also in her 40s, retired early from her job as a social worker because of her deteriorating health and now receives a modest state pension. Li’s severe disability entitles him to 400 yuan a month.
“This is what’s good about Shenzhen,” says Hu. “Here I can live as a normal person. They enable the disabled to live with dignity.”
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This year marks a decade since the United Nations Convention on the Rights of Persons with Disabilities (CRPD) came into force. In anticipation of hosting the Olympics and Paralympics in Beijing that year, and eager to prove itself as a global power, China had been a major backer of the international treaty, ratifying it in 2008 without any reservations. Since then, the country has passed disability laws and amended existing legislation covering areas such as rehabilitation, employment, social security and barrier-free environment.
China has made especially significant strides in educa¬tion for the disabled. The CDPF reported in 2006 that 43 per cent of China’s disabled population was illiterate, which was one reason why so many lived in poverty. In May last year, revisions to the country’s Regulations on the Education of Persons with Disabilities, originally passed in 1994, came into force. The revisions open up mainstream schools to students with special needs, promote the concept of integrated education and provide subsidies to students and schools.
While many schools, especially those in rural areas, still lack barrier-free facilities and teachers are often not prepared for pupils with special needs, the amendment has made it illegal for schools to turn disabled people away, which was a common occurrence in the past.
Another development is a nationwide regulation, implemented in 2015, that ensures that disabled students can take the gaokao, the national university entrance exam. Municipal authorities are now required to provide wheelchair-accessible examination venues, exam papers in Braille or bearing large-print characters, and screen-reading software, and the time allowed to complete the exam can be extended for those students who need it.
In the past, disabled students had little chance of receiving tertiary education in China. Even if they qualified, they were thought to have no prospects and hence discouraged from pursuing their studies.
When Li was diagnosed one year before taking the gaokao, his doctor suggested he “make a living by picking up a vocational skill like fixing electrical appliances”, he remembers. Li, however, aspired to greater things and he won a place at Peking University in 1990 by scoring full marks in physics and coming fifth across all subjects in his province.
“When I received the university acceptance letter to the physics programme, I saw another Stephen Hawking in the making,” says Li. But many challenges lay ahead.
There was, for instance, compulsory military training for freshmen, which Li managed to get through with the help of fellow students who literally hauled him over obstacles. Other physical barriers on campus proved tougher to overcome. As his muscle strength decreased, taking stairs became tantamount to “climbing Mount Everest”, he says. Abnormalities in his heart further threatened his health, forcing him to take a term off after his first year.
When he returned, he could no longer make it to classes held above the first floor, and so completed his degree on his own by studying in the library, albeit with less-than-satisfactory grades. Li’s dream of becoming a renowned scientist was now over, and he would settle for a prosaic job. But while graduating from a top Chinese university impressed employers, it did not, in their eyes, compensate for his disability.
One software company in Beijing gave him a chance, which he gladly took, even though it meant spending most of his salary on taxis to work each morning, and walking for 1½ hours to get home because he could not physically get on the bus. He was also, he believes, passed over for promotions, and when the office moved to a higher floor – leaving him exhausted on arrival and needing time to recover – he was fired for “poor concentration”.
Li recalls once visiting a technology conference. When the door to the room opened, a crowd rushed in and knocked him down. Li had always imagined technology as a tool for creating a better future, but at that moment, spread-eagled on the floor, he wondered, “Would people like me ever be included in that future?”
Finding a job has become easier, though challenges remain.
The government provides tax deductions for the employment of the disabled, and has set a quota that requires they make up 1.5 per cent of a company’s labour force. Those that do not meet the quota are required to pay into the Disabled Persons’ Employment Security Fund.
Many businesses, however, especially smaller firms, are poorly equipped to integrate disabled staff, and cannot afford the facilities and technologies necessary. What’s more, decades of being shut out of mainstream schools means many disabled candidates do not meet the basic educational requirements for many positions.
The situation has resulted in a phenomenon known as guakao, wherein companies employ disabled staff for the record but they do not have to turn up for work. Such firms save money by not spending on disabled-access facilities or paying into the fund; and the disabled earn an income for doing nothing. Such behaviour not only reinforces the narrative that the disabled are incapable of work but also discourages companies from building more inclusive workplaces.
What’s more, with the fund as a source of income for local governments, promoting employment of the disabled is not in their interest. And middlemen exploit the disabled by charging fees of up to 20,000 yuan for finding them guakao positions, even though disabled staff are likely to be paid the lowest salaries, of no more than 2,000 yuan a month.
“It is not entirely fair to place the responsibility solely on employers,” says Fu Gaoshan, a visually impaired partner at disabled persons’ organisation One Plus One. “The biggest problem is that [the country] does not provide proper education. Without that, the disabled are not adapted to mainstream society, and vice versa.”
Until education for the disabled is successfully imple¬mented in schools, those looking for jobs with career prospects will continue to face discrimination. In a WeChat group run by disabled young adults in China, job seekers write of a common dilemma: disclose your condition in your application and never hear from the firm, or hide your condition and be accused of dishonesty during the interview. Either way, applications end up being rejected.