While advocating awareness and policies for uncommon health conditions has always been of major global interest, the coverage for what the World Health Organization calls rare disease, or orphan disease, has only begun in recent years to receive the attention it deserves. In China, special medical services for these orphan diseases are still limited and often neglected. Because of the delay in effective diagnosis and treatment, as well as difficulty in obtaining medicine, many patients never improve and suffer a high rate of death.

The term rare disease refers to any disease that is infrequent or unknown and is often chronic or fatal. Approximately 80 percent of these 5,000 recorded rare diseases, which make up 10 percent of all human disease, are caused by genetic defects. Fifty percent of these diseases occur during childhood and can rapidly become deadly without treatment. In China, rare disease rates are lower, affecting one in 500,000 adults and one in 10,000 children. Sadly, very few of these rare diseases can be effectively treated even with access to the recently developed orphan medicines.

In this interview, one of China’s most celebrated photographers, Zhang Li-jie, speaks with Feng Huan, and discusses her personal and professional discoveries while photographing and visually exhibiting these groups who are often forgotten because of their rare diagnoses.

Feng Huan: Do you think that a photographer should record and show these overlooked groups or events?

Zhang Li-jie: Photography is just a tool. So is an article, documentary or radio program. And it is the public media’s responsibility to pay attention to marginalized groups. When severe acute respiratory syndrome (SARS) ravaged the whole country, we took it seriously. When it passed, all the patients who remained suffering chronically from SARS symptoms seemed to be abandoned by a margin of the society. It is as though they never existed in the normal world, but daily pain continues for the sufferers and their families.

Feng: Facing such a topic, it must be very important for you to handle the relationship between you and the photograph’s subject. Do you have any thoughts about how you deal with it?

Zhang: Actually there are two kinds of extreme situations. The first is that some of those who are featured show remarkable courage and selflessness. When the camera invades their life, it’s like they face a kind of intrusion. It’s human to feel uncomfortable or embarrassed when their imperfections are being brought to light, but sometimes they like to be dissected by the lens of camera. If I cannot help them after the shooting, I feel very sorry as if I reopened their old wounds. The second situation is that some of them regret or even claim that the pictures should remain unprinted or be deleted, because the pictures make a stir and attract lots of comments. Their demands often reach out of my grasp, and I feel helpless. It’s not as simple as executing an agreement. There are many other variables when you face these patients, and I hope my own experience will help others.

Feng: Yes, there is a desperate struggling family behind each photo. As a female photographer, how are you able to face and record such tragic scenes?

Zhang: Actually, sometimes I get tired, but I still persevere for prospect, for change, no matter how little the progress is.

Feng: Some of them may have never been photographed before, in part because of their diseases. How can you make them feel at ease and show their natural state?

Zhang: Many times there are surprises during the interview and photo shoot. It’s a difficult task to make them feel comfortable. Sometimes I feel helpless, sometimes a shining moment suddenly occurs, and this is where the miracle of photography lies.

Once, I went to interview an amyotrophic lateral sclerosis (ALS) patient in Tangshan, Hebei Province. She had been bedridden and couldn’t move at all for several years. A little dying bonsai on the sill of the window by her bed shocked me suddenly. It is a little plant with few leaves in autumn, stiffly placed in the flowerpot, but somehow seemed still alive. It was a cruel but appropriate metaphor for the patient.

Feng: Historically, marginal groups are not so rare in photography. Some may compare your work to that of Diane Arbus (1923-1971). Which photographer has the greatest affect on you? Who do you admire and appreciate most?

Zhang: I appreciate many photographers. It’s an honor for me that someone would think of Arbus when seeing my work. What I wish to form is my own way of expression. I demonstrate my views with photos.

Feng: Arbus’ works have caused a lot of controversy, which you can see in her focus of the subject and aggressiveness in her photography. How do you so deeply convey their miserable situation, their uncommon glamour? Do you feel confused or ambivalent?

Zhang: I have to balance both. For the photographer, only what is true or false is crucial. To discover their uncommon glamour and record their humiliation are both sides of a story.

Feng: I think you retain your restraint in the misery and discover glamour with your angelic photography techniques.

Zhang: No matter what we may or may not admit, it can become the photographer’s strategy to restrain that which is miserable and discover glamour, making a cruel truth more easily acceptable. My intention is to make progress in this way to show my respect for their dignity.

Feng: Your photo of the girl with Albinism sitting on the sill of the window leaves a deep impression on me.

Zhang: Her name is Zhang Yue. She is an orphan in Da-xing, Beijing. As a girl with a rare disease, she was abandoned at birth. I remember the interview was on a weekend, when she didn’t need to be at school, so she stayed in her foster home. The skirt she wore was chosen from her few clothes. Due to the Albinism, she was only able to open her eyes in the shadows, so shooting indoors was more comfortable to her. Below the windowsill was where the whole family slept. At the beginning I shot some photos and wanted to make a full-body shot, so I let her try to sit on the windowsill. In view of the backlighting, I tried to use fill flash in several ways, and at last, I lit an 800W cold-light lamp in front of her.

Feng: She appears like an angel in this photo.

Zhang: Yes. She is unyielding and sensitive, and deserves praise. Actually, she cares considerably about the difference between herself and others. The balance we talked about just now may be based on two points: the dignity of the photographic subjects, and the reaction of the readers. As for the final effect, I hope that such an observation and presentation to marginal groups is egalitarian, calm and as exquisite as possible, so that our concern and love will remain. Our original intention is to do our part to help them; then, why not avoid hurting them with our behavior during a photo shoot? That’s exactly what I think.

..... continued in ABILITY Magazine click here to order a print copy or to subscribe Or get a Free Digi Issue and read the full magazine, and see all of the photos, just by clicking "Like" on our Facebook page.

Excerpts from the Push Girls Issue Aug/Sept 2012:

Billie Jean King — Bouncing Back

ABILITY Award — Accenture and Prudential

China — Exposing the World

Push Girls — Living Large

John Williams — He’s the Man

Joint Replacement — Hard as a Bone

Articles in the Push Girls Issue; Senator Harkin — Working for Jobs; Ashley Fiolek — Switched at Conan; Paralympics — Better Than the Olympics?; ABILITY Award — Accenture and Prudential; DRLC — Affordable Health Care Act Benefits; Billie Jean King — Bouncing Back; Joint Replacement — Hard as a Bone; Tourette’s — A Friendly Film; Geri Jewell — Paper or Plastic; China — Exposing the World; Push Girls — Living Large; Marathon — Global Heros; John Williams — He’s the Man; ABILITY's Crossword Puzzle; Events and Conferences... subscribe