music-
Featuring 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 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 ive 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 . 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 there
was a huge demonstration of wheelchair s 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 .
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 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 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
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 . 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 it 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 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 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 ?
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 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 ed 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.
