益行俱乐部受ChinaDaily采访并吸引其关注乙肝问题

益行马拉松

益行俱乐部受ChinaDaily采访并吸引其关注乙肝问题

HBV carriers are dreaming of a better tomorrow

http://www.chinadaily.com.cn/cndy/2010-06/01/content_9914471.htm

By Joseph Christian (China Daily)
Updated: 2010-06-01 07:49 Comments(0) PrintMail
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Outside, it was a bright sunny day as Wang, Judy and Dandan sat around a large circular table at a Sichuan restaurant near the bustling Zhongguancun computer market.

Although their hometowns are far apart, they share a common bond - they are all carriers of the hepatitis B virus (HBV).

Judy, who initially claimed to be the sister of an HBV carrier, began the conversation.

"I'm sorry I deceived you," she said as tears welled. "But I didn't know if I could trust you. You know the situation is very serious for us - I'm afraid I could lose my job."

Even with new laws and regulations in place that effectively ban discriminatory HBV screening at companies and universities, most HBV carriers are too afraid to reveal their status, let alone tell their real name to a reporter who knows they carry the virus.

"I've already been refused employment because of my HBV status. That's why I won't tell you my real name," said a man who only identified himself only as Wang.

The polite and soft-spoken Dandan, who is looking for work, shares Wang's concern.

"Sometimes, I live in fear. If a company I am applying to finds out I have HBV, I am certain I won't get the job."

Life is not easy for HBV carriers in Beijing, which is why so often they can be found banding together in an effort to ward off the discrimination they face.

The easiest and most common way for them to connect is through the Internet via QQ groups and other message boards. The most popular website that HBV carriers in China use is called "In the hepatitis B camp," which has more than 400,000 registered users. The website offers HBV carriers many useful services but to the carriers themselves none is more important than the platform it offers to meet other individuals they can trust and have a sense of comradeship with.

"The only people I tell about my condition are my family and close friends. Websites give me the opportunity to meet new people I can trust and be open with," said Li a 27-year-old postgraduate student at Tsinghua University who is preparing to study for a doctorate abroad because he is too worried about not finding a job in China.

Even though he attends one of the best universities in China, Li has already been turned down for jobs because of his HBV status.

Even though many HBV carriers in Beijing live in fear, 28-year-old Xiao Zhenhua has put that fear behind him to spread the duel message of HBV discrimination and awareness.

"One year ago, I was too afraid to use my real name, but now I have found the courage. People need to see a real face behind the HBV message," Xiao said.

In November 2009 Xiao, who is currently a postgraduate student at Beijing Normal University, co-founded the Yi Xing Marathon club with a fellow outspoken HBV carrier Lei Chuang. The aim of the club was to help change the negative perception that Chinese society has toward HBV carriers. To do so, Xiao often runs in various long distance races wearing a green T-shirt that says: "Eliminating HBV is another marathon."

In the past eight months Xiao has run various marathons throughout China, including the Beijing Marathon last year. The club has also given lectures at Tsinghua University and worked to educate both the public and HBV carriers about the virus.

"Life is very difficult for us. Personally, I have been refused employment by two companies because of my HBV. By running in marathons I want to give hope to my fellow HBV carriers. But I also want to let others know that life as an HBV carrier is as hard as running a marathon. There is still a long way to go before we are treated equally," Xiao said.

While a marathon seems to be a fitting symbol for life as an HBV carrier, in Beijing most who suffer from the virus believe everything would be easier with more understanding and respect.

"My family worries about my health but they always support me. To them, I am a daughter they love, not a danger to their health. I wish everyone could treat me like my family," said Dandan.

FOR CHINA DAILY

(China Daily 06/01/2010 page28)

[ 本帖最后由 益行马拉松 于 2010-6-12 22:22 编辑 ]



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外面，阳光明媚。WANG，JUDY和DANDAN围坐在热闹的中关村电脑市场边的一个四川餐馆的圆桌上。
尽量他们都背景离乡，但是他们有共同关系-他们都是HBV病毒携带者.
首先声称自己是一名HBV携带者的姐妹的JUDY,开始了谈话.
“对不起,我欺骗了你”,她流泪说道,”但是我不知道是否可以信任你,因为形势对我们来说还是很严骏-我怕丢掉我的工作.”
尽量各地都有出台新的法律法规来有效地禁示HBVER在公司或学校受到歧视,但大多数的HBV携带者都太害怕泄露他们的状况,更不用说向采访他们的记者透露真实姓名.
“我已经因为HBV携带而被单位拒绝录用了,这就是为什么我不能告诉你我的真名的原因”一个只说姓王的男人说.
说话很有礼貌并慢条斯理的DANDAN正在找工作,他有着和小王一样的担忧.
“有时候,我活在恐惧之中,如果我应聘的单位查出我携带HBV,我一定会得不到这份工作”
通过互连网的QQ群或是其它消息板面相互联系对于他们来说是最简单也最常见的一种方法.在中国,最有人气的HBV携带者网站叫做”肝胆相照”,它已经有超过40万的注册会员.这个网站对于HBV携带者提供了许多的实用的帮助,但是对于携带者来说来这个平台所提供的对于别人的信任以及战友似的友谊是比什么都重要的.
“我只告诉了我的家人以及很亲近的朋友关于我的状况,网站给了我机会让我去认识可以信任的新朋友以及敞开心扉”一位姓李的27岁清华大学的研究生说,他现在准备出国攻读博士学位因为他太担心在中国找工作.
尽管很多北京的携带都都生活在恐惧中,28,岁的肖振华却收起了这份恐惧而传传播对于HBV歧视和恐惧而斗争的思想.
“一年前我很害怕使用我的真名,但是现在我已经找到了勇气.人面需要看到HBV思想背后的真实面孔.”肖说.
在2009年11月份,当时为北京师范大学的研究生的他与一位坦言为HBV携带者的战友雷闯一起成立了益行马拉松俱乐部.俱乐部的宗旨在对帮忙中国大众改变对HBV携带者持反对态度的看法.为此,肖穿着印有”消除乙肝歧视，另一个马拉松”字样的T恤经常参加各种各样的长跑比赛.
在过去的八个月里,肖已经在国内跑了很多次马拉松,其中包括去年在北京举行的马拉松长跑,并且益行马拉松俱乐部在清华大学举办了演讲,为公众和HBV病毒协带者进行科普.
“生活对于我们来说太不容易了,就我自己而言,因为携带HBV,我已经被两家公司拒绝过了.我想通过马拉松长跑来带给我的HBV战友们希望,同时我也希望别人能了解HBV携带者的生活像跑马拉松长跑一样的坚难,在追求到平等之前我们还有一长段路要走.”肖说.
对于HBV携带者来说,马拉松似乎是一种很好的象征,在北京,大多数的HBV携带者都认为随着更多的理解和尊重,环境将会越来越好.
“我家人担心我的健康但是他们一直都支持着我,对他们来说,我是他们深爱的女儿,不是他们健康的危胁者,我希望每个人能像我家人那样的对我.”DANDAN说.

中国日报
中国日报06/01/2010第28页

特深沉

这是大陆当局中悬部豢养的骗人报纸。他们炮制这种报道的目的，是为了粉饰太平，欺骗世界，妄图以虚假报道对外宣称所谓的文件有效果。

达芬奇

在中国，能报道这种消息，算是应该有进步了，社会还需要进步

新手一枚

支持，能够报道说明报刊是正义的

tyqtyqtyq

支持，能够报道说明报刊是正义的