Behind the Camera: Wu Hao (吴皓) on portraying “Rare but Real” patients

Wu Hao Rare but Real 01

Wu HaoWu Hao (吴皓) is an emerging talent in documentary photography in China. Born in Nanning, Guangxi province in 1987, he majored in news journalism in Shanghai and worked for local newspapers and commercial outfits. His passion to tell stories in and around China eventually led him to focus on documentary and reportage photography, including attending workshops by Magnum photographers Chien-Chi Chang and Alex Web.

Wu Hao is also an incredible street photographer with a keen eye for detail and flair for composition, which is really how I first got to know his work. It is a style that lends texture and depth to the rawness of his reportage work, which has included the “outsiders” lives of residents in a Beijing suburb to the pain of child gymnasts in China.

Website: http://www.wuhaophoto.com/

Recently, Wu Hao has joined up with 16 photographers who travelled across China to capture the lives of patients suffering from rare diseases like Medium-Chain Acyl-Coa Dehydrogenase (MCAD), Spinal Muscular Atrophy. The exhibit, “Rare but Real: An Exhibition of People Living with Rare Disease” “罕•见的世界”罕见病家庭纪实摄影展, runs only to 19 December (details below) before moving to Beijing in February 2014, then Chengdu and Guangzhou.

Hanjian bing (罕见病) means rare disease in Chinese but the curators, by separating the two words “罕” and “见”, reminds us that the patients and their plights are “rare but real”, and to view them as human beings rather than medical statistics.

I met Wu Hao (along with Lahem, whose work I featured earlier) the night they were setting up the exhibit. I was curious about his experiences working with a rare disease sufferer and how he sought to capture the story. His answers really moved me.

SAT: Can you share with us how you became involved with the “Rare but Real” photo exhibit?

请和我们分享你是怎么和罕见病发展中心合作拍见的世界罕见病家庭纪实摄影展?

WH: This photo exhibit is organized by Professor Ren Yue (writer, curator and Professor of Photojournalism at Renmin University) who runs Ofpix photography workshops and the Chinese Organization for Rare Disorders (CORD) who put a call out to participating photographers.  The purpose is to promote better understanding and hopefully more support and concern by the government and the public about the plights faced by patients, and families of patients, who suffer from rare diseases. I’ve always wanted to use my photography to help those in need so I decided to participate.

这个拍摄项目是由Ofpix工作室的任悦老师和罕见病发展中心共同组织并公开向社会征集摄影师,展览的目的是让社会公众和政府更好地了解罕见病家庭的现状和面临的困境,以此呼吁政府、社会给予罕见病群体关注和支持。我一直希望能用自己的摄影来帮助那些需要社会关注的群体,所以就决定参与其中。

SAT: You went to Lanzhou to photograph a young boy. What rare disease does he have, and was he in good spirits?

你去兰州拍的这个小男孩,他得了什么病,他的精神状态如何?

WH: The boy I photographed in Lanzhou is Li Heyan who is 13 this year. In 2010, he was diagnosed with mucopolysaccharidosis, an illness that manifested in a coarse face, opaque corneas, stiff joints, a short stature, liver and spleen enlargement, and ear and throat lesions. Currently, there are alternative treatments through certain subtypes of enzymes available abroad for mucopolysaccharidosis but the drugs are not available in the domestic market. Even if it does go on the market, it will cost millions each year and require lifelong medication. Without medical insurance, some families cannot afford it. This group has also been referred to as “sticky babies”.

我在兰州的拍摄对象是一位名叫李河言的孩子,今年13岁,2010年开始被诊断出患有黏多糖贮积症,病症表现为粗糙面容、角膜混浊、关节僵硬、身材矮小、肝脾增大、耳鼻喉部病变等。目前国外已经有针对黏多糖贮积症某些亚型的酶替代治疗药物,但这些药物还未在国内上市,即使上市,每年高达百万元的费用且需要终身用药,若无医疗保险支持大部分家庭也无力承担。该群体也被称为“黏宝宝”。

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SAT: Let’s discuss the photos you’ve shared here from the exhibit. Can you capture his state of mind during the shot?

谈一下你主要照片吧。你怎么形容他对被拍的感觉?

WH: In the time I was photographing him, I could clearly sense his maturity compared to his peers. This is not just reflected in the way he patiently responded to his treatment, but in a kind of calm exhibited beyond his age. This is because compared to other children, he is unable to participate in extracurricular activities due to the restrictions of his physical conditions. But this has given him a lot of experiences and personal time alone. To prove himself and give his family some comfort, he has developed strong self-esteem. On the one hand, he does not venture out and be exposed to external negative perceptions, on the other hand, he cares a great deal about how he presents himself to the rest of the world.

He rejected several of my requests to photograph situations, such as when he was at the massage and acupuncture treatment clinics or study life in school. These are personal decisions he made, and I can feel his self-awareness, judgment and attitude towards life’s many situations, and how he wants to gain the respect of others in his own way. This has left a deep impression on me.

在拍摄过程中我可以明显感受到他是一个比同龄人都要成熟的孩子,这不仅体现在接受治疗时所表现出的忍耐力上,还表现出一种超出他年龄的沉稳,这是由于相比起其他孩子,他不能经常参与那些开心的课余活动,特殊的身体条件给了他太多的限制,也给了他很多的历练和个人独处的时间,为了证明自己和给家人安慰,他变成了一个自尊心很强的孩子,一方面不再过多去纠结外界对自己的负面看法,另一方面又很在意自己向外界所展现的生活面貌,在拍摄沟通过程中他拒绝了我希望的一些拍摄请求,比如在按摩诊所扎针和在学校的学习生活,这些决定都是他个人思考作出的,对于他的自我意识,我能感受得到,他对生活中许多事情都有自己的态度和判断力,希望用自己的方式获得别人的尊重,这点很让我印象深刻。

SAT: In comparison to your occupation as news photojournalist, how would you differentiate this experience of photographing for “Rare but Real”?

你这次项目的拍摄过程和经验和你日常的报道摄影工作有什么分别吗

WH: In comparison to the pressing deadlines of photojournalism, this project has tested my ability to communicate with my subject. Rare disease sufferers experience more than physical illnesses, and mentally, their illnesses make them more guarded. Li Heyan matured early due to his strong self-esteem if you compare him to his peers, and hence, he is often reluctant to expose his vulnerabilities to others. At the same time, he is at a delicate age, filled with curiosity about the outside world. I’ve tried to observe his life from the perspective of an older friend rather than a cold bystander, and worked hard to ensure these photos reflect the essence of his real life and his state of mind.

相对于追求时效性的新闻摄影,这个项目更考验我与人沟通的能力,罕见病患者除了身体的病痛,心理也会由于疾病变得相对封闭,李河言是一个坚强早熟的孩子,由于自尊心比较强他往往不愿意向他人展露自己脆弱的一面,而他正处于一个微妙的年龄,对外界充满着好奇心,我尝试以一个大朋友的身份来观察他的生活,而不是一个冷冰冰的旁观者,努力使这些图片能够还原他的真实生活,能够反应他的心理状态。

Rare but Real PageWu Hao’s photo essay of Li Heya can be found here, you can also view the works of the 16 other photographers and portrayal of rare disease patients here.

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Location: Top floor of the Global Harbour Shopping Mall 环球港
3553 Zhongshan Bei Lu, near Jinshajiang Lu
中山北路3553号, 近金沙江路
Jinshajiang Metro (金沙江地铁站) on Line 3, 4 and 13 (Map)

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