|
聚光灯外艾滋病感染者的心路历程
2011年06月27日16:37新华社-瞭望东方周刊王晓
[导读]很多HIV感染者，听到“2012”都会异常兴奋，觉得如果地球毁灭，他们就和正常人一样了。
镜头背后的艾滋病感染者
学心理学的李军说，他接触的很多HIV感染者，听到“2012”都会异常兴奋，觉得如果地球毁灭，他们就和正常人一样了。
《瞭望东方周刊》记者王晓 | 山西临汾报道
晚上8点整，手机闹铃突兀地打破了四周的寂静。像是下意识的反应，胡泽涛打开药盒，取出几颗五颜六色的药片，服了下去。白色药盒上，写着“坚持就是胜利”。每12个小时吃一次药，这一连串的动作，13岁的胡泽涛已经坚持了6年。
和很多同龄的孩子一样，胡泽涛爱看动画片，爱听鬼故事，爱上QQ聊天，无聊时会给同学打骚扰电话。他最得意的，是在2010年参加了公益纪录片《在一起》的拍摄。 该片记录了电影《魔术外传》拍摄期间剧组通过网络聊天、全国寻访、征集选定艾滋病毒感染者参与拍摄的过程，入围第61届柏林电影节。
片中，胡泽涛有这样的镜头：
黄沙漫漫的塬上，一个穿校服、戴红领巾的男孩背着大大的书包渐行渐远。突然，孱弱的背影抽搐了一下，踉跄了几步，弯腰，倒地，扭曲成一团。十几分钟后，仍是这个穿校服的男孩，在导演的安排下，需要演一场哭戏。此刻的空气凝固下来，男孩的哀嚎声在山谷里回荡。镜头挪开了，哭声仍在继续，男孩一脸悲戚⋯⋯
“涛涛哪里是演戏，这分明是他的生活，他的宣泄。”看过片子，了解胡泽涛的人叹息着。
“他们一家人和我分碗筷”
从出生那天起，悲凉注定成了胡泽涛生命的底色。
“我4岁那年，我妈死了。”孩子的脸上，看不出一丝哀伤，他甚至根本记不清母亲的样子。
7岁时，胡泽涛像是中了邪——肚子疼、流鼻血，动不动就打针输液。幼儿班的老师害怕了，索性让他回了家。胡泽涛的父亲带着儿子辗转了长治、太原的几家医院，医生们也说不出个所以然。
直到2005年，胡泽涛被确诊为感染了艾滋病，渠道为母婴传播。死亡像个挥不去的幽灵，笼罩在山西省长治市武乡县洪水镇墨镫乡新村的这个农家小院里。
很快，父亲把胡泽涛送进了山西省临汾市传染病医院。
2010年度山西省艾滋病疫情通报会上公布的数字显示，山西累计对1140例符合治疗条件的病人予以免费抗病毒药物治疗，其中成人1080例，儿童60例。临汾市传染病医院院长郭小平对《瞭望东方周刊》介绍说，山西90%的HIV感染者都在该院接受或正在接受治疗。“其中不少是孩子。有的家长把娃扔下，就走了，根本联系不上。有的娃病情控制住了，但不愿意走了。”
为了让感染了艾滋病的孩子接受系统的学校教育，2006年，传染病医院成立了“红丝带小学”。目前，有16个孩子在红丝带小学治疗、就读，他们的母亲皆已去世。胡泽涛就是其中之一。
胡泽涛离家上学时，告诉村里人，说是去长治上学了。他怕说了实话，连村里的小卖部都不能去了。
消息还是不胫而走，并蔓延开来。几乎是一瞬间，曾经玩得好的伙伴再也不来了。
更多更明显的歧视出现在家里。“他们一家人和我分碗筷。”镜头外，胡泽涛无意中说出这么一句话。“他们”指的是他的奶奶、父亲和继母。
两三年前，胡泽涛的父亲再婚。新婚妻子进门之后，才知道有这么个感染了艾滋病的继子。“新妈妈怕我。”胡泽涛一脸平静，“她告诉我，手破了的话不能碰任何公用的东西。”
《在一起》的片子里，剧组在胡泽涛家拍下了这样的镜头：一家人围坐在一起吃火锅，父亲和继母很自然地夹菜给孩子。旁人疑惑，为什么不是孩子自己夹菜。父亲一怔，说，是怕孩子不小心，淋到了外面。尴尬的沉默过后，父亲允许孩子自己夹菜，但孩子还是怯怯地不敢去夹，再一次鼓励后，胡泽涛才小心翼翼地用筷子尖夹起一小根粉条，迅速抽回。
纪录片拍完后，导演特意找胡泽涛的家人和剧组的人一起吃饭。饭桌上，没有人计较和胡泽涛在一个盘子里夹菜。胡泽涛的父亲当场哭了，他觉得对不起儿子。
那些被污染的血液
“涛涛家里的情况，我是拍这个片子的时候才知道。那么小的孩子，怎么受得了这些？”胡泽涛在红丝带小学的生活老师刘丽萍也是一位HIV感染者。但和胡泽涛相比，她觉得自己挺幸运，至少不会被家人嫌弃。
拍纪录片的时候，刘丽萍和胡泽涛一样，拒绝遮挡，不打马赛克。
“我是1996年宫外孕手术时，输血感染的。”刘丽萍的脸上少有笑意，但说不出的坦然。
她回忆说，手术时由于大出血，当时就休克过去。后来听人说，来输血的好像是个老头。老头到医院问，有没有人要输血，刚好刘丽萍在抢救，医生就拉了老头去输。
刘丽萍说，自己的身体一直很壮实，连头疼脑热都很少有过。可到了2005年，她突然生病了，低烧、呕吐，嘴里起满疱疹。在当地医院的口腔科没查出什么原因，刘丽萍直奔山西省运城市疾控中心。“我当时已经怀疑是艾滋病了。因为我们镇上有人得了这个病，说是输血得的。我问过他，输血时间跟我差不多。”
几天后，家人把刘丽萍送进了临汾市传染病医院。“我在医院门口大哭大闹了两个多小时，死活不肯进去。”刘丽萍现在想起，自己都觉得好笑，“我想过死，想过报复社会。命运太不公平了，我做错了什么，我花了一万块钱输血，结果得了一个终生治不了的病。”
艾滋病不治会早死，早治才康复 艾滋病不治会早死，早治才康复 艾滋病不治会早死，早治才康复 艾滋病不治会早死，早治才康复
| |
| 图示∶2011年5月正式出版的《中国特色医疗金鉴》登载的刘君主任及其机构事迹 |
| |
|
|
Spotlight the mentality of people living with HIV
At 16:37 on June 27, 2011 Xinhua News Agency - Oriental Outlook Wang
[REVIEW] Many HIV-infected persons, to hear "2012" are excited, and think that if the destruction of Earth, and they are the same as a normal person.
Behind the lens of AIDS
School psychology Li Jun said that his contact with many HIV-infected persons, to hear "2012" are excited, and think that if the destruction of Earth, and they are the same as a normal person.
"Oriental Outlook Weekly" correspondent Wang | Linfen, Shanxi Province reported
8 pm sharp, mobile phone alarm abruptly broke the silence around. Like a knee-jerk reaction, Hu Zetao open kit, remove a few colorful tablets, clothes down. White kit, the words "persevering." Every 12 hours to eat the medicine, this series of actions, 13-year-old Hu Zetao has insisted for six years.
And many of the same age children, Hu Zetao like to watch cartoons, hear ghost stories, love QQ chat, the students will play when bored harassing phone calls. He is most proud of, and in 2010 took part in the public documentary "together" in the shooting. The film records the movie "Magic rumor" during filming crew through Internet chat, look for the country, collecting the selected HIV-infected people participated in the filming process, finalists 61st Berlin Film Festival.
Film, Hu Zetao such a lens:
The long plateau on the sand, wearing a school uniform, wearing a red scarf boy carrying a big bag lopsided. Suddenly, weak back twitched, staggered a few steps, bending, lying on the ground, twisted into a ball. Ten minutes later, still the boy wearing school uniform, the director of the arrangement, the need to play a crying scene. The air freezing down at the moment, the boy's screams echoed in the valley of the sound. Lens move away, and crying continues, a look of grief ⋯ ⋯ boy
"Taotao Where is the acting, which is clearly his life, his catharsis." Read the film, about Huze Tao people sigh.
"They have a sub and my dishes."
Day from birth, destined to become Huze Tao desolate background of life.
"I'm 4 years old, my mother died." Child's face, do not see a trace of sadness, he even did not remember her mother look.
7 years old, Hu Zetao like Zhong Lexie - stomach pain, nosebleeds, quick injection fluids. Preschool teacher fear, simply to let him return home. Huze Tao's father, his son was removed Changzhi, Taiyuan, several hospitals, doctors can not really explain why.
Until 2005, Huze Tao was diagnosed as infected with HIV, mother to child transmission channels. Like get rid of the specter of death, shrouded in Changzhi City, Shanxi Province, Ink stirrup Wuxiang County Township Village flood the town this small farm yard.
Soon, his father Huze Tao sent to Shanxi Linfen City Hospital for Infectious Diseases.
2010 AIDS epidemic in Shanxi Province, the briefing released figures show that in Shanxi total of 1140 cases of patients who meet the conditions to be treated free antiviral therapy, in which 1080 cases of adults, children 60 cases. Linfen Infectious Diseases Hospital Xiao-Ping Guo on the "Oriental Outlook Weekly" said, 90 percent of Shanxi HIV infection in the hospital Jieshou or being treated. "Many of them are children. Some of the parents dropped the baby, left, and did not contact. Some baby disease under control, but do not want to go."
In order for HIV infected children receive school education system in 2006, infectious disease hospital set up a "Red Ribbon School." Currently, there are 16 children at the Red Ribbon primary treatment, study, have switched their mother died. Huze Tao is one of them.
Hu Zetao home school, told the villagers, that is to Changzhi school. He was afraid that the truth, even the village could not go to the canteen.
News or spread like wildfire, and spread. Almost the moment, no longer have to play a good partner.
More more obvious discrimination in the home. "They have a sub and my dishes." Lens, Hu Zetao inadvertently say such a sentence. "They" refers to his grandmother, father and stepmother.
Couple of years ago, Huze Tao's father remarried. His new wife the door, they learned that there is such a stepson living with HIV. "The new mom afraid of me." Huze Tao look calm, "she told me, then broke the hand can not touch any of the common things."
"Together" film house, the crew photographed at home in Huze Tao such a lens: a family sitting together to eat hot pot, his father and stepmother is natural to take their food to children. Others wonder, why not the children themselves and take their food. Father hesitated, saying they are afraid their children are not careful, poured to the outside. After an awkward silence, the father allowed his children take their food, but the child still sheepishly not to clip, once again encouraged after Huze Tao was careful to pick up with chopsticks and a small tip of the root vermicelli, quickly withdrew.
After filming the documentary, the director deliberately looking Huze Tao's family and crew together for dinner. The dinner table, no one care about and Huze Tao in a plate and take their food. Huze Tao's father, in tears, he felt sorry for her son.
Those who have been contaminated blood
"Taotao home, I was making this film when it is known. So small children, how can I bear this?" Huze Tao lives in the Red Ribbon elementary school teacher Liping Liu is an HIV infection. However, and Hu Zetao than she felt very lucky, at least not by their families find it too.
When making documentaries, Liu Liping and Hu Zetao as refuse shelter, not to fight mosaic.
"I was in 1996 when the ectopic pregnancy surgery, blood transfusion infection." Liu Liping face little smile, but can not say openly.
She recalled that surgery as bleeding, shock at the time in the past. Then listen to people say, to blood transfusion seems to be an old man. Asked the old man to the hospital, there is no one to blood transfusion, just Liu Liping in the rescue, the doctor pulled the old man to lose.
Liping Liu said, his body has been very sturdy, very few had even Toutengnaore. Available in 2005, she was suddenly sick, fever, vomiting, mouth herpes from full. In the local hospital did not find out what causes dental, Liu Liping straight Shanxi Yuncheng CDC. "I was already a suspected AIDS, because our town people had the disease, said that blood transfusion was and I asked him, blood transfusion is almost time for me."
A few days later, his family sent him to Liu Liping Linfen City Hospital for Infectious Diseases. "I wailed in front of the hospital more than two hours, refusing to go." Liu Liping now think he felt funny, "I thought of death, thought of revenge on society. The fate of unfair, am I doing wrong What, I spent a thousand dollars transfusion, the results had a lifelong cure the disease. "
Until the discovery of infection in two children later, Liu Liping calm down. "I was particularly surprised how even the children will get the disease? Know that AIDS was sexually transmitted and blood-borne addition, there are also mother to child transmission, these children are the most innocent."
Linfen Infectious Diseases Hospital Xiao-Ping Guo said, before and after 1996, highly irregular blood. "There are patients to use blood, casually called individual came pumping on the line, do not do check in around 2004, we treated the infection, 80% of blood-borne."
There are public information, said China began to straighten out in 1993, blood, blood donation must be provided for HIV antibody testing. However, the blood (plasma) was once "blood heads", "blood tyrants" as a commodity business. The mid-1990s, in rich-quick environment under the influence, in the "life-saving blood donation honor" the call, the remote and poor rural areas, became the ideal cheap clean plasma collection, the majority of which are open for the health sector Blood.
Dead have no dignity.
Early attention to these children is no longer the eyes of the villagers. Yang, who lives in Yuncheng Xinjiang Han Wang Zhen Xinan Village Green secretly in love a boy from class, she bluntly Paoqu Wen Liu Liping, "We had the disease, can not get married? Can not have children?" Liping Liu Yizheng, solemnly told her, you can get married, you can have kids. Then she added, "If the other party and we are not the same person, we must tell them in advance, we have this disease." Some ignorant child nodded, remember.
Another was admitted to Hospital for Infectious Diseases in Linfen City boy had often to chat with Liu Liping, he said he liked a girl, is dating. "She and we the same?" Liu Liping asked. The boy said, not the same, then asked, "Is it not the same girl can not fall in love?" Liu Liping told him, yes, but to explain the situation of others. "Good pain." The boy knocked over a few words.
"This disease was the only advantage is that what little crime committed, not even close the detention center." Xiao-Ping Guo think of a funny thing has felt, "Once, our hospital received a phone call, let us to catch the thief, said the thief is living with HIV. a group of police to the thief around the middle, no one would dare move. to find the CDC, the CDC said they can stop, police found through the relationship between our hospital. "
"Living without dignity, the dignity of death has not." Liping Liu laments, "many of those infected in Yunnan told me they where, because people who died of AIDS, even after cremation urn no place to put, horrible. "
Liu Liping, unlike most HIV-infected persons as evasive, she admitted that their reason for calm, and transmission related. "This circle of infection, transfusion of discrimination sell blood, blood-selling discriminatory transmission, heterosexual transmission of the spread of same-sex discrimination. Saddest thing is infected gay men, who suffered a double discrimination, from outside the circle, there are circles. "
Infection old summer
Shanghai who refused to disclose the old summer routes of infection, "was not a blood transfusion, and do not ask." Phone, the voice of the old summer paused, "Sexual transmission is no place for China's five thousand years of culture and this disease, if one has a way of communication, the state is definitely not tube. "
Finished documentary "together", the old summer that they have "a severely stripped by the director." "I promised to shoot this film, is thought to make some money at first fight is mosaic, and later the director advised me that if infected people are playing mosaic, and propaganda is not enough. Production crew who are all so good to me, Finally, I promised not blocked. "
Old was diagnosed with HIV infection is the summer of 2008. That time, a time when Shanghai was doing a series of AIDS awareness activities, free testing of HIV, even back to 50 dollars is paid. "To be honest, if you do not give the 50 dollars, I will not go testing." Summer of recalls old, measuring out the result is positive, "At that moment, my mind went blank, I feel death coming tomorrow, devastated. "
Home, the old truthful account of the summer with his wife, and also to remind her to look up. Soon, "door-law" wife's mother out of the house was old and summer, his wife divorced him naturally.
Mothers infected the old summer village spread the message, the old summer not see the light like a rat, stay at home all day, afraid to go out. Soon, a friend told him that there is need for people cleaning the temple, the old summer appeals. Tube where he went, as long as to leave this place on the line.
Summer to tell the old abbot condition, the abbot told him, do not say this out, is not afraid of pilgrims come to know after the incense. Temple life boring and calm, summer day job is to whisk the old Buddha. After a time, he would secretly go to City CDC medication, regular testing CD4 (immune system, the important immune cells). "During that time very quiet, no distractions."
Clean out the temple, the old Xia Min nerve can still smell the sense that casual discrimination. Making documentaries, the crew of a foreigner stills division for water, the driver said, drink a bucket of water is a pig, a barrel is one drink. Foreigners ask, what is the pig to drink the barrel. Driver said, you drink it or drink pig, pig will not at least get AIDS. Summer in the old side, just heard, "he is telling the truth, but I was thinking, had I not like the pigs, very sad."
Halfway through the documentary, the old summer left the crew. Prior to serving as the resistance to antiviral drugs produced, the old summer of CD4 approaching 50, which means that the situation at this time he has been very dangerous. Back to Shanghai, the old summer clothes for a second-line drugs. Re-test three months ago, CD4 finally rose to 200.
But the temple work so lost. Worry about the old abbot summer exposed face, not pilgrims burn incense again, advised him to leave. Summer to find the old city of CDC, director promised him, help him find a job at the CDC. "No later than next month, and I will have to work." Excited voice of the old summer, soon to settle, "We got the disease, or resigned it."
"To 2012, we have all the same."
"Together" film house, Taotao, the old summer and Liu Liping was sitting under a tree chatting. "You think we live for many years?" Liu Liping casually asked one. "A year!" Taotao first to say. "Five." Replied the old summer. "Not 2012 (the world) gone yet?" Taotao so quickly. Liu Liping laugh, "Yes, yes, 2012 we are the same, and what HIV is not HIV, all the same, dumplings of all."
School psychology Li Jun said that his contact with many HIV-infected persons, to hear "2012" are excited, and think that if the destruction of Earth, and they are the same as a normal person.
"The baby later how, can only go one step further, the creed of." Xiao-Ping Guo mind off the mark, even the Red Ribbon school's future fate, in his view, are unknown. The school's predecessor, Linfen City Hospital for Infectious Diseases is designed for children with HIV who opened a small classroom, and later, more and more children, "small class" upgraded to become a "school."
"5 years, the school has been a black family, no diploma on their own fat, there is no official seal on their cover." Xiao-Ping Guo quite helpless, "to the Bureau of Education to several times, they said, the school will not meet you this school for the deaf , is not mentally retarded school, schools in this country without the approval of AIDS Standard ah. "
"Black family" means that no stable funding, no preparation, the children can not participate in the examination of national unity. A few years ago, the provincial leadership to the Red Ribbon school visits, a time when the school boiler is broken, the children shivering in the cold air. Leaders immediately asked Xiao-Ping Guo, the building re-built look, the province is given 2 million. A result, built up floor, 2 million has yet to dial down.
"Seeing the baby who grew up, appetite is also growing, and some steamed baby meal to eat 5. Light to eat, the poor will be able to eat." Xiao-Ping Guo laughed a little embarrassed, "but this Somebody has to do things right, people do not do, only I do. "
|
