Global Times: New rock group seeks to raise understanding of rare disease sufferers

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An original new rock band has become the voice of people who suffer rare diseases, using music to call for understanding and respect for people regardless of their medical condition.

“I can’t make any big movements,” said Wang Yiou, a Chinese woman with brittle bone disease, which forces sufferers to be extremely careful in their daily lives, as a simple fall could prove deadly.

Early last year, her friend Cui Ying, who suffers from the same disease, fractured both her legs and an arm after falling from her wheelchair.

But despite the inconvenience brought about by the diseases, they have chosen rock music to let people hear their voice. The moment they stand on stage, while having to restrict their movements, they are filled with energy and passion.

All the other members of the band, which is named 8772, also suffer rare diseases, but this doesn’t stop them from getting the crowd going whenever they blast out their songs on the stage.

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Staying true to their original intention, they only perform songs that they composed themselves, and their music is filled with hope and joy, illustrating their attitude and desires in life. They refuse to sing songs that complain about life or seek to gain sympathy from the crowd.

“Never rare, never rare. You don’t need to say sorry,” are the lyrics to one of their songs.

“We want to break the stereotyped image of rare disease sufferers in this way,” said 35-year-old Wang from Ji’nan, Shandong Province, who is leader of the band. “We don’t want to be known only as patients. Most importantly, we are human beings with flesh and blood like anyone else in the world.”

Starting from scratch

Wang, the president of an NGO that focuses on rare diseases, had always hoped to put together a band made of rare disease sufferers. But it was not until 2015, when she met Cui Ying, a Beijing girl who shared the same dream, that the idea was eventually turned into reality.

“We hit it off immediately,” said Wang. Later, several other people who also suffer from rare diseases joined in.

The band is named 8772 as it resembles the letters BTTZ. They are the initials of bingtong tiaozhan, which means illness challenge and is the name of the foundation established by Wang’s NGO.

Ma Ge, a musician from the band Sky, volunteered to teach them music and realize their dream. But it was no easy task. Of the seven people who started the band, only Wang had some musical experience – she had learned the electric keyboard at primary school.

The rest of the band had to start from scratch. Wang said that Ma visited the office of her NGO, which had been turned into a rehearsal room, every Tuesday evening for the past two years, come rain or shine.

As the name of the band suggests, every band member has to challenge their disease and pain when rehearsing or performing.

Wang, who is able to play any musical instrument if needed to make the band function, fractured her bones six times before the age of 16. Wang would need weeks and even months to recover from a simple fall which would be harmless for most children.

Suffering from a similar disease to Wang, Cui’s arms and legs stopped growing when she was very little, and she has to rely on a wheelchair to get around. As the band’s guitarist, Cui risks fracturing the bones in her fingers if she stretches them too much when playing.

Bass player Wang Yao, who suffers from hemophilia, loves playing football. But most of the time, he can only watch others play. Due to the disease, the joints in his arms and legs could swell to the size of a bun if he plays too much, followed by excruciating pain.

Electric guitarist Cheng Liting was paralyzed at the age of 3 after being struck by polio. To avoid moving too much, she usually has to go the whole day without going to the toilet.

All the band members have jobs and depend on themselves to live. The only difference is that they need to keep their diseases in mind when doing ordinary tasks.

Speaking for sufferers

More and more people are learning about rare diseases and their sufferers through 8772. Their goal is to get more people to understand and respect this group of people through their music.

Cui, 29, has loved music since childhood, but never had a chance to learn. As one of the band’s founders, Cui said that now they have a voice, they feel a growing responsibility to speak for this group of people.

When the members talked about setting up the band in 2015, they all agreed that they did not want sympathy from society, and would try to show the real daily lives of rare disease sufferers.

“Before, the media either made heroes or examples out of us, trying to make us a source of encouragement for ordinary people, or ask people to take pity on us. We are not like that,” Cui told the Global Times.

“We are like anyone else, it’s just that we live with a challenging illness,” added Cui.

Wang said their biggest challenge is getting society to understand them, adding that the reasons behind this misunderstanding are complicated, and are probably due in large part to the media. For example, Zhang Haidi, the head of China’s Paralympic Committee, and people like them are usually portrayed as examples of people who are “broken in body but firm in spirit.”

“Society likes to put labels on different groups of people, and once you’re labeled, that’s all you are,” said Wang. “But we are just normal members of society and are real and have rich personalities. They just need some support from society, just like wheelchair users might need more accessible ramps, or a job to feed themselves.”

As more people are getting to know about the 8772 band, some even write songs and send them in to them. Gradually, they have found more meaning in this project.

To dispel people’s misunderstanding, they write songs explaining their attitude toward life and their eagerness to pursue their dreams.

In China, when programs for disabled people or rare disease sufferers are shown, a song called “A Grateful Heart” expressing gratitude toward society is usually a must-play piece.

But Cui said they only perform their own songs, that reflect their true feelings about life, and refuse to cater to the stereotyped image society has of them.

At one show, they were asked to sing a Christmas song, but they insisted on singing their songs to gain understanding and respect.

“So when we sing, we are really happy. It is a quite different mentality from the song ‘A Grateful Heart.’ We want to get people to understand us,” said Wang.

In the future, Cui hopes that more people will care about their music, rather than their identity as rare disease sufferers.

Having working in the NGO for 10 years, Wang said she is happy to see that changes are taking place.

“Ten years ago, people had not even heard of rare diseases, to say nothing of misunderstanding sufferers,” said Wang, “It takes time.”

“Sometimes we do things for others, but actually we also do it for ourselves,” said Wang, “Building more accessible ramps, for instance, will also help mothers with babies, pregnant women and the elderly. You don’t know when you will become a minority.”

Source: Global Times