Disabled in China: why life is still a struggle in a society designed for the able-bodied

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 man­age­­ment, 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.

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 character­ised 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 hyper­kal­emia (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 wheel­chairs, 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.