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 Chinas 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 medias 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 photographs 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, its like they
face a kind of intrusion. Its 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. Its 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
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. Its 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 couldnt
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
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
Zhang: I appreciate many photographers. Its 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 photographers
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 didnt 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? Thats exactly what
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