The lowdown on being disabled in China

 

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Featuring upcoming clips.

Beth-

Hello and welcome to the BBC Ouch podcast with me, Beth Rose. It might only seem like yesterday that we were marvelling at the Summer Paralympics, but already it’s time to talk about the Winter Games. And this time they’re in China. With a population of 1.4 billion China estimates that about 85 million of its citizens are disabled, that’s just over 6%. But it does seem a little low when the World Health Organisation says about 15% of the world’s population are disabled. So, on this episode 26-year-old student, Jia, who has spinal muscular atrophy and lives in China, and Stephen Hallett who’s a specialist in disability affairs in China, chair of the UK charity China Vision, and a visiting professor at the University of Leeds, are going to take us on a whistle-stop tour of disabled life in China. Hello both of you.

Jia-

Hi.

Stephen-

Hello.

Beth-

Jia, you’re in China at the moment. Just tell me a little bit more about yourself, where you live, what you study.

Jia-

Yes, I live in Guangzhou, a southern city in China. I am studying for public policy, but in the past I was a student of medieval history of England.

Beth-

So, I think you’ll know a lot more about the history than I do, but how are disabled people thought about in China? What has your experience been?

Jia-

Yeah, it’s a very interesting topic because the perception of disability has changed a lot from my childhood. Now the group of people with disability is more diverse. So, some people are well educated and so they work for some big IT companies which are more open for us. And more importantly is that people with a disability can go outside to use the public transportation and also go shopping, and so the common people become more familiar with them. Now whenever I go to the metro station I can see some people using the wheelchair, so sometimes I will shake my hands with them or give them a smile.

Beth-

And Stephen, you’re a bit different in the sense we should say you’re visually impaired. And you first moved there quite a long time ago as a student. What was it like immersing yourself in that culture the first time round?

Stephen-

Well, first to say well actually it’s very interesting what you're saying, Jia, about your experience, at the age of 26 you’ve already seen big changes. When I was first in China you very, very rarely saw disabled people, and particularly you didn’t see blind people or visually impaired people. You saw a few people in wheelchairs, usually kind of almost home-made Heath Robinson contraptions on the street. And I actually worked with one friend, I was teaching English in the very early ‘80s, he had polio and he was disabled and he had a kind of contraption that he got about in. But he didn’t go out. I went to his home and he occasionally went to teach in a classroom. Getting around the city was very, very difficult; there were no accessibility facilities for people and it just wasn’t possible. And that was true really until quite recently, I would say maybe ten, 15 years ago.

 

And on the other side, talking about attitudes to disability, you either had to be a hero, you had to be very, very brave and show that you had some kind of special gift, or you had to be at home, very kind of repressed and not sort of be seen in public because you were a disgrace to your family and a disgrace to society.

Beth-

2008 was a very big year for China. It hosted the Summer Paralympics in Beijing, it was the first time it hosted them, and then also it signed the UN Convention on the rights of persons with disabilities, which committed to fundamental freedoms such as the right to education, employment and transport. Jia, you were only 12 then but can you remember that?

Jia-

Yeah. Before 2008 I usually go travel with my family by plane, but if we are taking the plane the biggest challenge for us is that we need to carry my wheelchair to the plane. And at that time the accessible service is not so good. But now it’s very easy for me to apply for the accessible service. I just need to make a phone call or fill in an application form on the internet. And every time I use the underground, because for the most of the time there are some staff that are helping me, so there are elevators which make my trip more easy. In the past when I take the train or take the subway I needed to climb up the stairs, which is sometimes impossible for me.

Beth-

Stephen, from your point of view you were a bit older than 12 years old when 2008 happened, have you seen things change since 2008?

Stephen-

Yeah, at that time I was very involved in setting up a radio production centre actually with visually impaired people, with other blind people, who are an amazing group of young people, very motivated, very keen to try and bring about change in their lives and the lives of other disabled people. I was very close to changes in people’s lives at that time, but also how disabled people themselves were beginning to mobilise independently to demand change. So, I’d say on the area of accessibility, which is so interesting, there were two big reasons that things changed: one certainly was related to the Olympics and the Paralympics because in 2008 the eyes of the world were on China. It was no coincidence that China also ratified the CRPD, the Convention on the Rights of People with Disabilities in 2008, because it wanted to be seen as being supportive and active in disability rights. And also it wanted to show that Beijing was a really accessible modern city. So, an enormous amount of investment, billions went into building a whole new subway system, into making buildings more accessible, introducing ideas of universal design which were then incorporated in Chinese law so that new buildings had to be made accessible. And we saw that impact, which really started around that time, 2006, 2007, 2008 then filtering through to other cities like Guangzhou. So, Jia you’re a beneficiary of that, as well as we all are. And then even to smaller provincial cities. That was one side.

 

And then the other side was this mobilisation at that time of civil society, of disabled people; not just the government organised Disabled Persons Federation, which at that time was under the patronage of Deng Xiaoping’s son, Deng Pufang, who did bring about big changes and there was political support. But also it was seen as an organisation of government, of control, and it didn’t really represent the independent voices of disabled people. And many, many organisations sprung up, self-help organisations of people with different disabilities, blind people, visually impaired, people with physical disabilities and deaf people. Just all over the country you had this movement of organisations who became aware that they had a voice. And the UN CRPD was critical to this because it demands that disabled people are represented in monitoring the government’s implementation of its promises under the UN Convention. There were legal cases, landmark cases. One friend of mine who was blind but went to law school in China, one of the first people to get a law degree in a Chinese university, and he’s totally blind, and he then as a lawyer took on several cases to sue carriers, aircraft companies and train carriers to provide proper accessible accommodation for people.

Beth-

Wow.

Stephen-

And in some cases there were disabled people in wheelchairs actually kind of rioting in airports because they weren’t being allowed onto planes. They were being told you couldn’t come unless you had a responsible non-disabled adult with you to take you on in your wheelchair. There were cases like that which went to court and were resolved. But I have to say that since then, and particular since in the present era, the presidency of Xi Jinping, it’s become more and more and more difficult for civil society and for disabled activists to be able to fight their cases. And so we’re very much dependent now on the government to make those changes. And I’d say actually the government have done a lot and they have responded to many of those calls by civil society, but I’m afraid the momentum is now wearing down because the government has a total monopoly of all activity and so civil society is weaker than it was.

Beth-

So, it sounds like there were years where grassroots activism was exciting and moving everything forward, and then you’ve had this change. Are there legal restrictions on people demonstrating? What makes it so difficult now to have that momentum?

Stephen-

Yes, I mean you can’t hold public demonstrations. There were many public demonstrations before 2012, some of them legal, some of them illegal, and many of them broken up by the police. I remember there was a huge demonstration of wheelchair users in Anhui Province in about 2009 for various reasons, because people were being denied accessible homes. So, there was a big public movement at that time. And that’s all stopped. You do not see public activism or protest any longer in China. But what you do get is people working in much more subtle ways. For example, policy advocacy or handing petitions to be taken to the National People’s Congress so that there can be policy changes. And people have become much more sophisticated and strategic in the way that they bring about change.

Beth-

Jia, how about you, have you or any of your disabled friends been involved in activism or policy change?

Jia-

Yes. I’m a patient of SMA and so we have an organisation there for SMA patients, and if we want to have some policy change we will go to their website. Their website is the place where we can share our opinions and give our suggestions to the government. So, many of us we would go to that website and type our suggestions. And some of them we would gather together in front of the building of the government as the place we would come, but they won’t touch us. They are trying to bring the medication for our disease into health insurance in China, and so they go to the government and talk to them. And a member of the government goes outside to talk to the representative of us to tell them what they can help us. So, these days many people with disabilities try to interact with the government face-to-face or online, so it’s a new choice.

Beth-

Does it feel like the government is listening to you when you’re sending your emails and queries? Does it feel like they are listening and moving things forward?

Jia-

Yeah, they have replied to me and told me that they are thinking about it, because the medication for our disease was really expensive, so they’re thinking about how to cover that into the public health insurance. They did reply to me and give me some kind of feedback.

Beth-

Of course, as we’ve heard, you are studying at university.

Jia-

Yes.

Beth-

And education is obviously a huge topic of conversation. Tell me a bit about your schooling. Did you go to a mainstream school? Did it support you?

Jia-

Yeah, I have been in the mainstream schooling system for my whole life up to now. When I went to my high school it was embarrassing because at first there was no accessible bathroom in my campus, so all of the toilets are squat toilets, and so I need to put my plastic toilet in the toilet corridor. That means everyone could see me when I was in the toilet.

Beth-

Everyone could see you?

Jia-

Yeah, so I didn’t have any privacy so I was a little bit embarrassed. But when my head teacher knew about it she applied to the school to build an accessible toilet for me in an accessible room. It took a lot of money to build this kind of accessible bathroom but they didn’t charge me anything. And when I say thank you to them my head teacher responded to me that I don’t need to say thank you because I gave them the opportunity to improve the school environment. So, I was lucky to have this kind of school and teacher.

 

Also when I was young I couldn’t walk independently in my classroom, but I was an outgoing person and I would like to make friends with my classmates. So,  my teacher had her own strategy. She didn’t tell my classmates that, oh all of you need to make friends with Jia and talk to her. She just changed my desk mates and desk partners every two weeks, so I had the opportunity to talk with and contact with everyone in our class, and I have been friends with most of them after the semester.

Beth-

So, it worked really well for you. And obviously your teachers were really receptive and willing to help. With the bathroom situation did you go to the head teacher and say, this is happening and it’s not on? Or how did they find out about that situation to then change it?

Jia-

At the beginning, because I didn’t want to become a troublesome student so I didn’t talk to them. But one of my friends told my head teacher that, “Jia feels a little bit embarrassed so maybe we should do something for her, don’t let her be stared at when she was in the bathroom”.

Beth-

What about university, because you’re much older, much more confident at this point?

Jia-

Yeah, there were challenges. The first day when I was in my university I found that they were a different kind of teaching building in our campus, the only one that didn’t have an elevator, but many of the lectures that I would like to take were in that older teaching building. So, I thought it might be a pity if I couldn’t take those lectures just because I couldn’t go to that older teaching building. My teacher asked me what kind of lectures did I plan to take this semester, because she could arrange the location of the lecture so that I can go to the lecture in the newer teaching building so that I can participate in the class. I think it’s not a very easy thing because the newer building is far away from the office building of our teacher. But all of my teachers are nice and they’re willing to do it for me, so I was really lucky.

Beth-

It does sound like they are really nice and you’ve come across willing people. Does it frustrate you? If this happened in the UK there would be lots of frustration, maybe news articles about how they would support one student but it’s not for everyone. Is that frustrating for you that maybe your friends aren’t as lucky as you and you’ve got kind teachers?

Jia-

Yeah, some of my friends didn’t have this kind of good opportunity to go to school and have this convenience because they might be in some less developed cities, so the environment, especially the environment in the school, is not accessible.

Beth-

Stephen, Jia sounds so positive about all these changes, and obviously it’s brilliant that the changes were made. It feels like it wouldn’t go down so well in the UK. And obviously you having lived in both countries, what’s your perspective on it?

Stephen-

It's very interesting what Jia is saying. And I think what it illustrates is that very often it’s up to individuals to make changes. I have many friends in China visually impaired and people with other disabilities who have managed to get through because they’ve had very accommodating teachers or they’ve been given special support. I have one friend who lives in Wuhan in central China who’s now actually working for the Disabled Persons Federation, and she has a physical disability, she has a wheelchair, she has a congenital spinal problem. And when she was at school, and she’s phenomenally bright and works really hard, comes from a poor rural area, but her mother and her aunt used to have to carry her on their backs up and down the stairs into the school classroom so that she could continue studying.

Beth-

Wow.

Stephen-

And that went on for about over five years. And then she eventually got to university and she made it through. Of course with 85 plus million people with disabilities in China a lot of people do make it through, but not enough. I mean, if you think for example visually impaired people, the official number of visually impaired pepe, of blind people in China is about 10 million, probably it’s more like 20 million, it’s actually very hard to count. And of course many of those people live in the countryside, and their opportunities to go into higher education are very limited. So, we have seen changes, and again mainly because of pressure from disabled people, from civil society in the last ten years or more, to make university accessible for visually impaired people. So, blind people in the past if they went into tertiary education they could only do Chinese medicine and massage, or maybe in a very small number of people piano tuning. And there were only a very small number of universities that would admit those people. But now after ten years of campaigning a tiny number of people, I mean literally a handful – I think it was six last year – managed to get into university through the gaokao, which is the university entrance certificate, like Metric or a bit like A-levels. But that’s what you have to get through to get to a mainstream university.

Beth-

Wow, and six is tiny as well, isn’t it?

Stephen-

Tiny. I mean, of the thousands of blind people in schools, whether in schools for the blind or in mainstream schools, it’s a tiny number getting through now to do other subjects, not just massage, not just Chinese medicine, and maybe doing law or English or arts subjects. But the numbers are still very, very small. So, the changes are tiny but they’re happening. And it is up to people like Jia, like Jia’s teachers and individuals who are being more accommodating and bringing about the change. And it will change over time.

Beth-

What’s the education like in the sense do most people get to go to mainstream school? Do they get to go to school? Or are there specialist schools they tend to get funnelled through?

Stephen-

Well, under Chinese law all children from the age of six legally have the right to go to school, so there’s compulsory education for all children. And they’re now trying to extend that more and more to preschool as well as to sixth form. So, nine years of compulsory education is guaranteed for all Chinese citizens. But for many disabled people in the countryside access to education is still very limited, often for physical reasons because the accessibility simply isn’t there, people live in remote areas, or very often parents will actually hide their disabled children at home because they feel disgraced or there is social stigma. So, there are a whole range of reasons. And so there are many, many children who still don’t have access to education.

 

Children with physical disabilities the opportunities are there. For people with sensory disabilities or with learning disabilities it’s much, much more difficult to get into the mainstream schools. And children with visual impairments will generally be channelled through to the special schools, schools for the blind. And China has built many, many more of those since 2008, even though it’s committed under the UN Convention to inclusive education. But inclusive education now is only beginning to happen. It is happening, but most visually impaired people will still go to special schools. And for children with hearing impairments many of them now with cochlear implants and with medical intervention will now go to mainstream schools. So,  there are many, many more disabled children going to mainstream schools. But they’re not necessarily getting the support that you would expect in a fully integrated or fully inclusive system. Very often they’re sitting at the back of the classroom not getting the full support that they need.

Beth-

It feels like there’s a lot of work to go. But jumping back a few sentences ago you sort of mentioned that some families might hide their children or they feel real shame that their child is disabled. Is that still now in 2022?

Stephen-

I think in rural areas yes. I mean, it varies from one part of China to another. It’s interesting, I mean there are cultural differences, and of course China is very diverse. For example in north China in Inner Mongolia where there are Mongolian families I was surprised to find that actually disabled children were more included in family life. In parts of rural south China disabled children are very often excluded. And there is the old idea in China that a filial piety, that being loyal and filial to your ancestors – and this is an ancient idea – means having a healthy child who can then proudly serve the family line. So, there are those traditions which go back a long way. And of course that’s changing. And in the cities especially attitudes have really changed. And it’s changing because people like Jia and many other people and many of my friends who are out there being seen in public are really changing attitudes.

 

Just to give one story, actually a really funny story, a friend of mine who’s blind, who’s been doing a lot of wonderful work in China, who also studied in the UK and who’s an educationalist, his wife is sighted. And one day not long after he was married he was walking in the street and a car stopped and said, “Oh can I give you a lift to your massage parlour?” And he said, “Well I’m not a masseur”. The driver said, “What do you do?” He said, “I’m actually a researcher, I’m an academic”. And he said, “That’s not possible for a blind person”. And so he said, “Well it is, I studied in the UK”. And the final comment of the driver was, “You know your wife, I just saw her, she’s very beautiful. How come you have such a beautiful wife?”

Beth-

Oh no. When was this, a long time ago?

Stephen-

No, about ten years ago. But he came to work afterwards, I saw him, and we were laughing. We were rolling around on the floor because this comment was so crazy but so funny. And people do have a great sense of humour when it comes to things like that.

Beth-

Oh well that’s good. Jia, I was going to ask, if you’ve been to school the hope is that you’ll find a job and hopefully a job in something you enjoy. But I wonder how difficult it is in China for disabled people to get work. It’s very difficult, well around the world really, it’s difficult in the UK, it’s difficult in Japan. Jia, what are you hoping you might do as a job when you graduate?

Jia-

I would like to be a researcher in university.

Beth-

In some ways it feels like academia, I know a lot of disabled people who go into academia. But I wonder if those people who want to work in an office or as teachers is that much more difficult to get a position, do you know? Have your friends tried to get jobs?

Jia-

Yes, some of my friends are now finding jobs. I would like to find a job too. Just last weekend I participated in a round table, the topic of which is employment issues and some suggestions for people with disabilities to find a job. And there was an HR talking about her own experience and ideas about hiring people with disabilities. She said that she and many of her HR friends nowadays don’t really discriminate against people with disabilities; they are more pragmatic because in theory, and in law, all companies need to have 1.5% of their staff to be disabled people, or they should pay for the employment security funds for disabled people.

Beth-

It sounds really positive. Quota systems are used in lots of countries, so 1.5% of the workforce in China is ideally disabled. Stephen, does it work like that in practical terms?

Stephen-

To some extent yes. The motivation when the 1.5% quota was introduced in the ‘90s was originally very positive. It was to try as an interim measure to make it possible for more people with disabilities to get jobs, to give a sort of carrot and stick approach where companies would be fined with the security levy if they didn’t reach that quota. And then the money which came from fines could then be used in theory to provide training for more disabled people. So, it was seen as being possibly a virtuous circle. It hasn’t quite worked like that. One thing to say is there’s a saying in Chinese [Chinese spoken] that there are policies above and counter policies below or counter actions below. So, people always use policies very creatively. I think possibly more so than in this country, than in the UK, that we tend to expect government to provide, whether it’s welfare or reasonable accommodation or guarantees of non-discrimination. In China disabled people have become more and more kind of active in trying to improve their own lives by making creative use of the policies. So, yes there are far more disabled people, and particularly people with mobility challenges, with physical disabilities where working at a desk really their disability doesn’t affect their work performance at all. Because China has become a much more desk bound society over the last 30 years, so there is no reason those people should face any sort of discrimination at all. It’s more difficult for people with sensory impairments or with learning disabilities; that’s one of the big areas where we need greater change.

 

But I think there are changes. And one way that people have been very creative with the use of the policy, and I have many visually impaired friends who have done this, is that they register nominally with a company. A company will give them a sinecure, a symbolic job. They won’t be allowed to come to work or they won’t be invited to come to work. They’ll be given a basic income, which may be a bit less than the living wage. Their social security will be paid by the company. The company will actually spend less on providing the symbolic job to the disabled person than they would be paying in a fine if they didn’t reach the 1.5% quota, so everybody’s happy.

Beth-

Is everyone happy though?

Stephen-

Well, the government sees that its unemployment figures are down. The disabled person gets a bit of money and then maybe can go and do a freelance job and earn a bit of other money on the side. And the company doesn’t pay the fine. It’s a kind of accommodation where everybody gets off Scot free. But of course what it doesn’t do is it doesn’t push the envelope; it doesn’t help solve the problems of discrimination. So, one of the problems is that China actually doesn’t have antidiscrimination laws as such. It has the quota and it has areas where it says, well it is not advisable to discriminate against disabled people, but there are no penalties for companies that do discriminate. So, there aren’t great incentives to really provide reasonable accommodation if it costs a lot of money or to change the situation to make it possible to employ bigger numbers of disabled people.

 

But I think what is really changing, exactly what Jia was describing, is people are getting in there. People are proving that they can be beneficial, a very active part of the workforce. And disabled people are fantastically creative. I think we see this all over the world that the greater the challenges for disabled people the more people rise to the challenge and try to bring about change. And that’s what I’ve seen in the last 40 years in China is how change has happened because disabled people have been out there bringing about the changes and demanding change. And that’s been true in the educational field, it’s been true in employment and it’s been true in the areas of accessibility. So, generally I feel really positive that the younger generation of disabled people in China are going to bring about big improvements in their lives.

Beth-

Well, I did promise all of us that it would be a whistle-stop tour through disabled life in China. Thank you both so much for all of that information and all of your insights and experience. Obviously we’ve done this in honour of the Winter Paralympics. So, I have to ask, Jia will you be watching any or listening to any on the radio?

Jia-

Yes, I have read some news about it and so I will watch some of them. But now I’m still finding what kind of, what item of the matches that I’m interested in.

Beth-

I think China you’re pretty good at the Winter Games, or you did well in Korea. From my personal experience I would say the sled hockey is the one to watch.

Jia-

Oh really? Okay, let me try it.

Beth-

It’s very exciting, lots of battles and everything. What about you, Stephen?

Stephen-

I will try and watch some of it. I was lucky actually in 2008 that I went to some of the events of the Summer Paralympics in Beijing at that time. And it was fantastically exciting just to see so many disabled people there performing in public and being really supported by the crowds. It did raise the stakes as far as disability was concerned. I think the problem now is that the Winter Olympics north of Beijing are happening in a bubble. Like with the Winter Olympics earlier on last month that public participation is less possible now. So, for a whole range of reasons I think they’ll probably get less attention. Also that the Paralympic team is a very, very elite team in China, very sort of cut off from the rest of society. So, while I’d like to see that it has an impact on disability awareness I think it might be fairly limited.

Beth-

Yes, I think that is the case in a lot of countries that it is this elite cream of the crop. Not everyone wants to be a sportsperson either. But it should be an exciting ten days I think of sport, and hopefully the UK and China does well on the medal table. Thank you both so much for chatting to me about everything. It’s fascinating.

Stephen-

Thank you so much.

Jia-

Thank you.

Beth-

[Music] [Chinese spoken] What were you saying?

Stephen-

Just saying that we should keep in touch and talk in Chinese in the future.

Jia-

Yeah.

Beth-

Ah nice.