This project aims to rouse people’s understanding and attention, encourage the government to solve their difficulties, and give those who suffer the dignity to live or die.—Lijie Zhang
London-based photographer Lijie Zhang has been photographing people with rare diseases in China since 2009. Though some statistics say that there are nearly 10 million Chinese citizens living with a rare disease, misdiagnosis, lack of medicine, and governmental discrimination cause most to suffer as lonely outcasts. With the general populace often completely ignorant and little government care provided, The Rare is one photographer’s ongoing mission to not just raise awareness, but bring about definite change. Zhang recently told us more about the topic.
Given that many people who suffer from rare diseases are neglected by society, how did you find your subjects?
“I am a journalist working with China Press for People with Disabilities, an authoritative news outlet affiliated with the China Disabled Person’s Federation. This gives me the opportunity to contact disabled people and associated organizations. With few laws or regulations addressing this population, people with the same condition often band together in small groups or communities for mutual support. One of the NGO’s I work with is China-Dolls Care and Support Association. They are one of the best and most efficient organizations I know. They share their contact information and help coordinate.”
Are many living in poverty because of their disease?
“Most of the patients are living in poor conditions. Because of the disease they cannot be employed like other people. For example, Osteogenesis Imperfecta, a condition that causes bones to be very fragile physically places them at risk for breakage or sudden falls, among other hazards. Thus, most of the patients are short of regular income. They are also subject to discrimination and lack of social integration.”
How are they able to receive treatment?
“Compared to Western countries and developed Asian countries with well established systems for caring for these people, patients with rare diseases in China are in a difficult situation. Very few of the rare diseases are met with effective treatment or medicine; there are many who suffer from misdiagnosis and lack of medicine.”