The situation for the estimated 80 million disabled people in China can be symbolized by the “blind lanes” that were installed starting in 2001 in a well–intentioned effort to help blind people navigate in cities. Although the tactile pathways are helpful in some cases, many end up at a barrier or sometimes, in an effort to be decorative, are installed in patterns that seem to discourage the most direct path to a destination.
I have been to China six times, starting in 1995 when I traveled with a group of disabled women from the US to the Non-Governmental (NGO) Forum at the United Nations Fourth World Conference on Women in Beijing. At that time, when most Chinese disabled people were kept hidden away, women with visible disabilities were objects of curiosity, subject to stares and gathering crowds when they ventured outside the conference grounds.
Even today 20 years later, the lack of social services in many areas, the lack of enforcement of disability rights laws and the stigma still attached to being disabled mean that many families don’t believe they can care for a disabled child. Since China has relaxed its one-child policy and implemented “baby refuges,” close to 98% of the children who are abandoned in China have a disability.
In 2004, my husband and I adopted our older daughter, who is blind, from China. She was 12 years old at the time and had never been to school because she was raised by a foster family who lived in a rural area where the local school would not accept her.
The lack of access to education outside large cities is a big problem because, according to a 2013 report by Human Rights Watch, 75% of China’s disabled population live in rural areas. This has resulted in a 43% illiteracy rate among people with disabilities in China. Twenty-eight percent of children with disabilities cannot access basic education.
Disabled students who make it through high school have traditionally been barred from attending regular universities. The gaokao, China’s competitive national college entrance exam, was not made accessible to the blind until 2014. Still, even if a disabled student is able to pass the exam, they may be barred from attending university because of a “physical fitness test” that requires applicants be without impairments.
Two news stories in 2014 dominated coverage of the gaokao issue, one about a blind man who successfully petitioned to take the exam in Braille but wasn’t able to pass it due to his poor Braille skills (he had asked to be provided with electronic access) and another about a physically disabled young woman who passed the exam but then was rejected based on her disability. Both stories generated a lot of debate online. Even with some negative reactions to the stories, some disability rights advocates believed it was positive step to get the issue out in the open.
“As far as the visual disability community is concerned, the debate about how to fight for the right to take the gaokao may soon be a thing of the past,” says Fu Gaoshan, editor-in-chief of Qishi Consulting in a report — China Disability Observed 2014 (written in partnership with China Vision). “But when it comes to the entire disability community, the rights debate has only just begun. Even if it’s only taking place with the disability community at the moment, this kind of discussion will inevitably take the debate about disabled people’s right and interests even further.”
One Plus One — the Voice of People with Disabilities
Qishi Consulting is part of One Plus One, a unique organization I had the opportunity to visit during my most recent trip to China in July 2015. One Plus One is trying to change the situation for people with disabilities through a combination of media projects, job skills training, a hotline, and leadership training for young disabled people. Their goals are to give voice to the concerns of disabled people in China, change social attitudes and promote the integration of disabled people into mainstream society.
They are committed to establishing and developing local organizations for disabled people and to protecting the rights of people with disabilities throughout China.
The Beijing-based non-governmental organization is one of the only disabled people’s organizations in China established and run entirely by people with disabilities. It was started in 2006 by two disabled people with IT backgrounds. In 2008 two of the staff became the first fully accredited disabled Chinese journalists in the history of the Olympics.
Above all, they believe it is essential that disabled people have their own, independent voice.
In 2013, One Plus One teamed with the Media Research Institute of the Chinese Academy of Social Sciences to issue Observation Report on China Print Media of Disability Reports from 2008 to 2012. Studies showed that the themes of 1,468 reports from 2008 to 2012 were mostly focused on disabled people’s health or rehabilitation and the help they received from others. The voices of people with disabilities were rarely represented and there were very few reports on education, employment and the participation of disabled people in public life. Most of the news reports failed to introduce disability rights concepts, such as inclusive design or discrimination or reference any of China’s disability laws.
As a result of the research, One Plus One produced the Reporters’ Handbook for Reporting Disability, which encourages media to look at disability from a human rights perspective and promotes more positive terminology, such as the use of 残障 (cán zhàng), which translates roughly to “disabled and obstructed,” rather than the more commonly used 残疾 (cán jí), which translates to “disabled and sick” or “deformed.” One Plus One had begun promoting the term cán zhàng in 2006 and noted that its use in news media increased from less than 1% to around 10% in 2013.
Cai Cong publishes YouRen, One Plus One’s magazine, written by and for the disabled community. He is trying to change the media image of people with disabilities. (Video interview with Cai Cong from On the Level)
“In addition to environmental obstacles, an important aspect is the various misunderstandings and negative attitudes,” he says. “On many occasions, disabled people are regarded as useless and in need of compassion. It is these kinds of thoughts that put me through all those experiences and confusion in my early years. Where do these thoughts come from? Do disabled people isolate themselves or are they isolated by the public’s attitude and actions? Whatever the origin, mass media is constantly deepening the old stereotype image of the disabled in public.”
Improving the situation for people with disabilities anywhere in the world involves a multi-pronged approach, which includes disabled people being educated about their human and legal rights, forming social movements, advocating for policy change at a governmental level and changing the attitudes of the nondisabled public.
In all of these, news and information play a key role.
One Plus One operates a radio station — Voice of the Blind — that broadcasts throughout all of China via China National Radio, reaching as many as 300 million listeners. They are particularly interested in reaching rural areas, where their program is usually the only source of information about disability issues. Mastering the skills of radio production has given members of the production team the confidence to express their views.
The programs covers issues such as how to access education and employment, independent living skills, and accessible technology.
To help disabled people in poor, remote rural areas of China obtain essential information, One Plus One operates regular ‘Mobile Advice Clinics,’ staffed by members of One Plus One together with experienced legal, health and personal counsellors. Over the course of 15 clinics they have given direct counselling to over a thousand disabled people. This has enabled them to keep in touch with some of the poorest people in the community.
Listeners often call into the station’s hotline, seeking additional information.
“Often they want to know if we know of a cure for their disability,” says Cai Cong. “We try to re-direct them to look at living with a disability — how they might access services and live independently. We want them to know that they are not the problem — the problem is the physical and attitudinal barriers within society.”
“One of our listeners, who is totally blind, lives in the rural area of Sichuan Province,” Cai Cong continues. “He is our faithful listener, because the radio is the only way for him to get information. When he heard that we opened a hotline for the blind, he asked his family to buy a cellphone for him so that he could give us a call. Through the hotline, he learned how to get free screen reader software. He went to the local Disabled People’s Federation to get computer training and a living allowance.
“Later he heard on the radio that we were beginning to provide a service to make audio books for the blind. He sent us a book about how to feed pigs, as he felt pig farming could be an employment option for blind people in rural areas. He got the idea that blind people are valuable and should be active by listening to our programs.”
The people who staff the hotline all have disabilities and are trained on the center’s accessible phone and computer technology. One of the staffers, a young woman who was working there during her summer break from college, told me that growing up, her parents were supportive of her becoming independent and choosing her own career path. Ultimately however, she was only allowed to attend the Special Education College of Changchun University that trains the blind students solely for massage therapy jobs. “Do you want to be a masseuse?” I asked her. She laughed, “No! I hate massage.”
The education issue affects the employment rate of people with disabilities, which has been estimated at 40%. Of those employed, 36% are female and 64% male. Aside from directly affecting people’s independence and ability to support themselves this also has wider implications. The Human Rights Watch report noted, “China loses as much as US$ 111.7 billion, or about 3 per cent of its GDP, as a result of lost productivity stemming from excluding persons with disabilities from the workforce.”
One Plus One addressed the issue of education and employment, as well as other issues such as women with disabilities and access to information, in its 2012 report, Implementation of the United Nations Convention on the Rights of Persons with Disabilities (China ratified the convention in 2008 but has been slow in implementing its principles. The United States has signed but not ratified the convention.)
To prepare a new generation of activists, One Plus One holds leadership training camps for young disabled people from all over China.
The workshops includes disability equality training, information about the Convention on the Rights of Persons with Disabilities and disability rights in other countries, how to tell a good story, how to make use of social media and how to influence traditional media. At the end of camp, everyone is assigned to tell a story in three minutes.
One leader at the most recent camp in July, who has cerebral palsy and speaks with some difficulty, described his experience speaking in front of a group for the first time:
“During the process, I was very humorous, very witty, everybody was laughing happily. I felt very good. I was forced to do it but this taught me, we need to learn to take one step forward. When you have your first step forward, there is a new and beautiful world. Before I had very low self-esteem, no self-confidence, dared not to talk especially in front of people. When I was forced to break through, the result was not bad.”
An important aspect of the camp is connecting people with different types of disabilities with each other — especially those who are isolated in their communities — to encourage them to support each other and work together to effect change.
Can You Hear Disabled People’s Voices?
On a national level, in an effort to move the disability rights movement in China toward more visibility, diversity and inclusiveness, in November 2014, One Plus One launched China Voice of Disability Month. The goal was to give a big picture of disability rights, educate people about resources and attract the attention of the government and public to promote changes in attitudes.
It was the first large-scale joint activity created by the disabled community and provided coverage of a full range of disability issues, taking place in 31 cities in 22 provinces and including 57 partners and 87 events.
The starting point was “Can you hear disabled people’s voices?” and the end point was “Yes, I can hear disabled people’s voices.”
It included a public discussion in Guangzhou on disability and sex, one of the few times this topic had been openly discussed.
“When disability and sex are put together,” says Cai Cong, “it opens up something that penetrates deep into the heart of the problem faced by disabled people: the acceptance of one’s body and oneself.”
Voice of Disability Month will be held every November in China and possibly other countries around the world to celebrate the independent voices of disabled people.
“Of course, all disabled people hope that perhaps one day the China Voice of Disability Month will cease to exist,” says Cai Cong, “because by that time there will be no need for us to have such an event.”
Patricia Chadwick writes about disability and media issues and sporadically maintains the website of the Disability Social History Project, co-founded with her late husband Stephen Dias, a disability historian and archivist and activist from the Section 504 sit-in.