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World Blind Union campaigns for access to digital world

The recent World Blind Union conference held at Cyberport highlighted how the digital divide is holding back the visually impaired. Sarah Lazarus speaks to six delegates who are driving social change

Sabriye Tenberken, who lost her sight as a child, with students at the school for the blind she founded in Lhasa, Tibet.

What would life be like if you couldn't see?

It's an age-old question but these days it extends far beyond the obvious concern of how to cross a busy road, to how to succeed in the world of the sighted by crossing the digital divide.

Blind people from more than 20 Asia-Pacific nations recently gathered in Hong Kong to address issues including the dearth of books and websites accessible to the blind, and new technology-based initiatives that can empower the visually impaired. At the regional conference of the World Blind Union, an umbrella organisation that speaks to governments and international bodies on issues affecting the blind and visually impaired, delegates provided a reality check on what life is like for the estimated 90 million in the Asia-Pacific area who cannot see well.

If you're from a poor country, you're much more likely to be blind in the first place. Eighty per cent of all visual impairment can be prevented or cured. As a consequence, 90 per cent of the world's visually impaired come from low-income backgrounds, and there's a much higher incidence in developing countries.

If you're blind, you're more likely to have experienced prejudice. In many poor countries, superstitious belief systems mean that the blind are socially stigmatised. And it's highly unlikely that you'll have gone to school - nine out of 10 blind children in developing countries have no access to education.

Wealthier societies, like that of Hong Kong, offer better health care, superior facilities and greater social acceptance. However, the blind face deeply entrenched problems that are common to both rich countries and poor.

It's hard to find a job. It's estimated that about 70 per cent of blind people in rich countries, and 90 per cent in developing countries, are unemployed - even though the blind develop other sensory abilities that they believe can add value to many workplaces.

In an information-driven world, blind and visually impaired people also suffer from a lack of access to the books and other sources of information necessary to lead a well-rounded and successful life. In the richest countries, only 7 per cent of published books are made accessible in formats such as Braille, audio and large print. In poor countries, it's often less than 1 per cent. This "book famine" cuts them off from learning, working, culture and the joy of reading.

The conference venue, Cyberport, in Pok Fu Lam, participated in the event by overhauling accessibility to its facilities for the visually impaired. It was there that delegates spoke to about their lives, passions and hopes as blind people in this part of the world, and of persistent barriers to inclusion that remain beneath the radar of most sighted people - even in our super-connected age.

 


The German-born co-founder and director of Braille Without Borders, which runs a school for blind students in Lhasa, Tibet, has been nominated for a Nobel Peace Prize for her dedication to empowering the visually challenged around the world. She was the keynote speaker at the World Blind Union conference.

"I WAS SIGHTED until I was nine and then I lost my vision, slowly but steadily. That was a tough time. The worst thing is the isolation - how other children and society react.

"My parents always trusted that I would find my way. They said, 'You have to find the techniques and strategies to cope with what is new.' And I did. They read to me a lot, especially biographies and histories about transformation, such as the story of the black power movement. Activists like Angela Davis transformed the concept of 'black is inferior' into 'black is beautiful'. My parents were giving me a hint. It's very important for blind kids to understand that you don't have to be pitied. You have to accept what you are and embrace it, and then you can make the best of it.

"Around the age of 13, I started to concentrate on the beauty of blindness. I'm a very visual person and before I became blind I was easily distracted. I was superficial and I tended to judge people by how they looked. I became less judgmental and I found I could learn faster, memorise things, communicate better. I became a problem solver because I was constantly having to think of solutions.

"Blindness is not darkness. It's not the same. It drives me nuts when people say this. I see whatever I want to see. I tell blind kids, 'You mustn't feel disappointed. You have your own life in your own head.' Initially, I was horrified by blindness but it was a very different transformation to the one I expected.

"I went to an amazing school for blind children where we did adventurous sports like cycling, horse riding and kayaking. I realised that the world is open to me if I trust my abilities and know the right techniques.

"I decided to go into development work and applied to the Red Cross, but they turned me down. So I found my own way. I thought Tibet sounded like the adventure I imagined in front of me. I saw wilderness, I saw mountains and white water. So I studied Tibetology, Mongolian and a little Chinese. I discovered there was no Braille system for the Tibetan language, so I developed one. Then I travelled there, on my own, and I took the Tibetan Braille script with me. Eventually I set up a Tibetan Braille printing press.

"I travelled on horseback through the villages and the locals helped me to find blind children. What I discovered was very depressing. Buddhist culture is ignorant. Many Tibetans are extremely poor and have superstitious beliefs. The problem is the idea of karma; they believe that you are being punished for something you did in a past life. For a simple person one of the biggest punishments is blindness, so in your previous life you must have committed the worst crime, which is murder. Because of this blind people are treated as outcasts. I've been called a murderer many times.

"They don't know how to take care of blind kids so often they tie them to a bed. I saw these things and it made me furious. And it made me wonder what I could do.

"I decided to set up a school. Paul [Kronenberg, Tenberken's Dutch boyfriend, who is sighted] quit his job and came with me. It was a much bigger step for him - he had more to lose. He was a qualified engineer, living a conventional life, and he had to jump out of that. I was already outside the mainstream so I had nothing to lose.

"The school is like a springboard, giving the children the knowledge, the methods and the confidence they need for life in the wider world. They learn that there is nothing wrong with being blind - it's not karma and they don't need to be ashamed. I want them to stand up and say, 'I'm blind, so what? I can do a lot of things.' We prepare the children to attend regular school. To integrate they need reading and writing Braille abilities, mobility, communication skills and confidence. You can't lean on the teacher - you have to be able to solve your own problems. They need a good head start so we teach them really good Chinese and maths, and especially English. When they go to regular school, they have something they can trade - they can help the sighted kids with English and, in return, they might receive help from them.

"Eighty five per cent of our kids have gone on to regular school without any supervision. In some cases their English is better than the teachers'. From very early on we talk to them about their dreams, about finding their passion and working out how to go for it. They come from nothing so they have nothing to lose by taking a risk.

"We also set up a vocational training farm for adults. They learn animal husbandry, agriculture, cheese production, baking, and it's all organic and environmentally friendly. Our dream was to have this place run by former students of the school. The first and second generation are now in their mid-20s. They could be doing better but under the circumstances they're doing exceptionally well.

"I now live in south India, where we run kanthari. We work with people from the margins of society who have suffered adversity and who have a vision. Our alumni include former prostitutes, former child soldiers and blind and disabled people. We select candidates carefully to ensure they are ethical and reliable. They receive seven months of intense training from international experts so they can run their own projects. It's like a dream factory.

"Over five years, kanthari has had 117 graduates of whom over 70 are already successful. Projects they've done include starting a school for the blind in the bush in Brazil, campaigning against the killing of albinos in East Africa, beekeeping for street children in Lagos [Nigeria], establishing programmes for women in India, Zimbabwe and Nepal, and community literacy centres in rural Thailand.

"It's different to our work in Tibet but what's similar is that it's not charity - it's all about empowerment."

 

CHONG CHAN-YAU
The Hongkonger was one of the first blind students to attend the University of Hong Kong. A former executive director of Oxfam Hong Kong, he’s currently president of the Hong Kong Blind Union.

“I BECAME BLIND AT the age of six. It was probably glaucoma, but we weren’t sure because my parents couldn’t understand the terminology the doctors were using.

“The good thing about Hong Kong, in terms of being blind, is that it’s a very compact city, and people follow the traffic rules. We have audible signals at traffic lights and on the escalators at MTR stations, and in some places there are guided paths. Also, we generally find people to be helpful.

“But people are also the problem! They are often willing to offer help, but they don’t know how to, and that can be dangerous. It’s always a challenge for blind people to move independently in the streets.

“Another positive thing about Hong Kong is that the educational opportunities are as good as they can be, because the exam system is open to us.

What’s not so good is that less than 5 per cent of the books produced each year are made accessible to blind people, so there are very limited resources.

Technology should mean that this proportion will be substantially increased. It’s not difficult to make books accessible – the publishers are already using electronic publishing software – but there’s not enough effort made and we are still losing out.

“It’s a particularly serious problem in Chinese publishing. Chinese e-books tend to be more protected and less accessible than English-language ones. We don’t know why that is; we’re campaigning to have more Chinese texts made available.

“The Jockey Club has funded a pilot programme and we’re campaigning for the government to fund a regular service, to enable students to have access to reference books, but they are currently refusing to do so for reasons of bureaucracy. The Social Welfare Department say it’s an education issue, and the Education Department say funding can’t be channelled through organisations such as ours.

So we are falling between two stools of government funding. It’s unbelievable that bureaucracy can restrict action in an area where the need is undisputed. It’s not an issue about money, because it wouldn’t cost much. The policymakers seem to be primarily concerned with these artificial bureaucratic divisions, as if that’s a justifiable reason. It’s crazy! “We are also campaigning for all Hong Kong web providers to design their websites to be compatible with screen readers, so they’re accessible to blind people. We’re promoting the adoption of an international standard that was pioneered by Tim Berners-Lee (inventor of the World Wide Web). The government supports this but we think they should be more proactive and make it a requirement for all government service providers.

“Employment is another big issue. We want the government to promote a target so more employers give jobs to blind and disabled people. The government is the biggest budget spender in Hong Kong so they have the clout. If they wanted to, they could make a big difference.”

 

MICHAEL CURRAN
The Australian software programmer believes in universal access to computers. As an executive director of the charity NV Access, he developed a screen reader called NVDA (non-visual desktop access), which is free and available in more than 150 countries and in 43 languages.

I can do anything on the computer using NVDA - browse the internet, write Word documents, check my email. The entire operating system becomes accessible to me because the software reads what's on the screen and provides it in synthetic speech - it talks.

"I was born partially sighted and lost the rest of my vision at the age of 15. I then received a grant from the Variety Club - an organisation that helps children with disabilities to achieve their goals. My goal was to go to school, so they gave me a laptop with a screen reader called JAWS. This is the most popular one on the market today but it costs thousands of dollars, so many blind people can't afford it.

"As soon as I got the laptop, I was on the internet. I became really interested in computers and started to learn a bit of programming. I studied IT in high school and was in the top 10 per cent in the state for that subject.

"My other major interest is advocacy and helping blind people. I started the NVDA project with a friend because I wanted to merge my two passions: computers and blindness advocacy. Right from the beginning, we decided to make NVDA open source, which means that people anywhere in the world can download it for free, can read the code and can contribute by fixing bugs or adding enhancements.

"We started with English and then people in different countries started adding translations in their own languages. The use of Asian characters is a particular challenge. When you're typing in Chinese, Japanese or Korean, you often have to press more than one key to make a character appear. That's very hard for a blind person as there are many ambiguities and some symbols sound the same but are written differently.

"In 2011, I got funding from Hong Kong and Taiwan, which allowed me to improve and unify the Chinese and Japanese code so that it worked for everyone in East Asia.

"Our top country is Brazil. They tell me it has transformed the lives of blind and visually impaired people there. It's also very popular in the United States, Thailand, Hong Kong, Taiwan and Vietnam.

"Being able to use a computer opens up your world. In the context of the 21st century, it enables blind people to participate in society. With a computer I can run a company, use social media, chat, shop and seek employment. I couldn't do that before. Computers also enable blind children - who can't see the blackboard - to get an education.

"The future is a moving target. Computers are constantly upgraded so our work is ongoing. We will continue to innovate to make sure that blind people don't get left behind."

 

MARYANNE DIAMOND
The former president of the World Blind Union now works for Vision Australia and campaigns on behalf of the Marrakesh Treaty, which aims to simplify the process of publishing books in Braille, large print and audio. Signatories must allow blind people to make accessible formats of books without copyright holder permission and to freely import and export such versions.

all my life. I have four children, one of whom is blind.

"Depending on where you live, between 93 per cent and 99 per cent of books are not available to us blind people. The World Blind Union had been working with publishers for many years, long before I got involved, to try and change this, but with very little success. The publishers didn't recognise the scale of the problem and they didn't see that this was an unmet market, because they didn't perceive the blind and disabled community as purchasers of books. But, of course, the reason we weren't buying books was because they weren't available in a format we could read.

"In 2008, three member states at the World Intellectual Property Organisation (WIPO), which usually works to protect rights holders, introduced a draft treaty. We then entered five long years of negotiations. We met stiff resistance from various member states and publishers, partly because they were worried that if they helped one group it would set a precedent and they would be inundated with requests. Finally, in 2013, the WIPO adopted the Marrakesh Treaty. It was a huge victory.

"We believe that information is power, and that access to it is a fundamental human right. Books and other sources of information are essential for receiving an education - like many blind people I went through school, and even through university, without access to books. It's a miracle that anyone can manage that.

"Unemployment is extremely high among blind people and access to print sources is the first step in changing that. It's necessary if you want to participate in a cultural life, for recreation, for the ability to make choices and decisions in life, for everything. Information is what makes us valuable contributors to our communities.

"The treaty is only good if governments ratify and implement it, so that's our big priority now. Only six countries [India, El Salvador, Mali, United Arab Emirates, Uruguay and Paraguay] have ratified it so far and we need 20 before it comes into force. We've got a lot of work to do but we're confident we'll get there by the end of 2015. The next step will be to work on the practical challenges - to make it operational and get books into the hands of blind people as soon as possible."

 

GANZORIG GANBAATAR
The native of Ulan Bator, in Mongolia, entered the World Blind Union's Youth Forum competition in the hope of winning US$2,000 to fund his handicrafts projects, but lost out. He hopes to find funding from other donor organisations.

old and I became blind in 2010. The cause was glaucoma - I had perfect sight before that. Glaucoma is very common in my country. The doctor told me there is no treatment.

"It's very tough being blind in Mongolia. Some people believe that blindness happens because you've done something bad in a previous life. People have said this to me. Personally, I don't believe it.

"My eyes look OK so people are surprised to learn I can't see. They think blind people have no eyes or look strange, and they think blind people can't talk - that when they lose their sight, they also lose their ability to speak. So people assume I can't do things like walk or travel independently. They think blind people can't do anything. The ignorance is terrible.

"In Mongolia, there's only one publisher producing books in Braille so there are not many books we can read. There are no talking traffic lights. There are some tactile pavements but very few, so it's difficult for us to travel around safely. And in terms of education, there's no inclusive system. It's very difficult for young blind people to study.

"In Mongolia there are about 15,000 blind people and only 5 per cent of them are employed. I want to give blind people and their families vocational training, so they can earn a living.

"I attended the Mongolian Agricultural University and graduated as an agricultural specialist. In Mongolia, there are 50 million animals, of which 20 million are sheep, and they produce a lot of wool. My plan is to teach the blind how to make wool-based handicraft products and how to run a small business. They will learn to clean, wash and boil the wool to produce felt, which can then be used to make high-quality gloves, scarves and slippers. People can't believe it when they see how nice my felt slippers are.

"They don't believe blind people can do it but we don't need our eyes to do this work, we can do it with our hands."

 

JENNIFER WONG MING-WAI
The psychotherapist and hypnotherapist, who runs a practice in Central, spent her childhood in Hong Kong, moved to Canada as a teenager and returned in 2013.

“I WAS BORN WITH perfect sight. Everything was good.

Then, when I was eight years old, I suffered a severe allergic reaction to medicine I was given for a cold. It’s called Stevens-Johnson syndrome and it’s very rare.

“My skin and nails fell off, as well as the membranes surrounding my internal organs. I looked like a 100 per cent burns victim but the doctors said it was more like 200 per cent, because it was inside as well. I was unconscious and the doctors thought I would die. But Jesus saved me. I experienced that. When I was lying in bed I remembered a Bible verse that says “Don’t be afraid, just believe”, and I had great peace in me. I knew God was with me the whole time so I was fine, even though it was very painful.

“So I lived but I lost my eyesight. It also affected my respiratory system and I have a permanent chronic cough.

“I was the first blind kid at my regular primary school.

The teachers didn’t know how to help me – they didn’t have an integrated education system, then – so I had to help myself. Before I became blind I was a dumb kid – I failed all the tests. Afterwards I became very assertive.

I took the initiative, and my brain started to grow! My grades got much better.

“I moved to Canada in 1997 and attended university there. I have three degrees. I wanted to become a doctor but I couldn’t so instead I became a physician of the heart. I work with adults, mostly on individual cases but also with some couples.

My focus is depression, anxiety issues and trauma, and I have experience treating eating disorders and phobias. I use talking therapy and hypnotherapy – whatever works.

“In the beginning I wasn’t sure I could do it. I thought it might be a problem that I couldn’t see my clients’ facial expressions and gestures – I can’t pick up those visual cues. But my professor had confidence in me and I trusted her. And then, when I met clients, I knew I could do it. It’s all about the inner connection. I read people by listening closely to their voices – it’s incredibly revealing and I can hear what they’re saying from their hearts.

“I also find that most clients feel more relaxed because they know I can’t see them. They tell me they don’t have to worry about how they look to me, if they show their sadness on their faces.

“People are often surprised because they can see I’ve faced a lot of challenges in my life, but they know I’m not asking for help, I’m giving it.

“Blindness is a blessing. There are lots of challenges but the benefits are greater. I experience blessings around me every day and everywhere, even though I can’t see. It opened my eyes in a different way.”

 

Cyberport blazes a trail with blind-friendly initiative

Last year, the Hong Kong Blind Union launched an initiative called Make Accessibility Real, with Cyberport shopping mall - the venue of the World Blind Union conference - as a showcase.

According to Peggy Ko Pik-kei, project manager at the Hong Kong Blind Union, accessibility in the city's public spaces - parks, libraries and other government-run facilities - is reasonably good, with guide paths, tactile floors and Braille signage. But, she says, in privately run establishments such as shopping malls and restaurants, the needs of blind people have not been considered at all.

"We launched a social enterprise project to help shopping malls increase their accessibility, by getting blind people to test their facilities and advise them on how to improve."

The first step was to correct Braille signage.

Cyberport has installed a Braille floor plan (above) and signs on railings (below).

"We found that some malls had ordered their Braille signs from overseas. The Braille was written in the wrong language - not in Cantonese or English - and they had no idea! A blind person could have told them with one touch of the panel, but they didn't even know that Braille could be in different languages, so they didn't think to check."

Restaurants are being encouraged to produce menus in Braille under the Friendly Restaurant Scheme.

"Hong Kong has thousands of restaurants, many of them in shopping malls, but, according to our members, none of them have Braille menus. This makes it difficult for them to eat there - they need help with reading the menu and ordering. They can't be independent.

"This is really important because eating in restaurants is central to having a social life in Hong Kong," says Ko.

As the pilot mall, Cyberport has introduced extensive Braille signage along with blind-friendly tactile floors, rails and elevators, and has ensured its website is fully accessible to screen readers. All of its 17 restaurants - from those at the upmarket Le Meridien hotel to the McDonald's - now have Braille menus.

 

This article appeared in the South China Morning Post print edition as: The visionaries
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