How Paper and Scissors Gave Back Dignity to Hemophilia Patients
The traditional Chinese craft of paper-cutting is helping people with the blood disorder earn a living.
Over the past couple of years, I have helped people with hemophilia take up the traditional art of paper-cutting in order to boost both their income and their confidence.
The project may sound counterintuitive. Hemophilia is a genetic disorder that impairs the body’s ability to form blood clots. The condition means that everyday bruises, bumps, and grazes — paper cuts, for example — can result in serious bleeding, and surgical procedures can easily result in complications. Unsurprisingly, hemophilia patients encounter many difficulties in their day-to-day academic and professional lives. My son was born with the condition.
Unlike in some Western countries, Chinese people who have hemophilia are sometimes ineligible for welfare benefits because of their condition. Hemophilia is not classified as a disability, so those living with the disorder often struggle to find work and lead normal lives.
In 2006, I got to know two women whose children also had hemophilia. Back then, national medical insurance in Chongqing, the city in southwestern China where I live, did not cover hemophilia treatment, and medication was often exorbitantly expensive. That year, the three of us founded the Hemophilia Association of Chongqing to raise awareness about the disorder. Thanks to our efforts, the city began treating hemophilia later that year, a step that dramatically reduced the cost of medicine for patients and their families.
Soon afterward, however, one of Chongqing’s hemophilia patients killed himself. Both of his parents had recently passed away, leaving nobody at home to take care of him. Back then, the state did not cover the basic living expenses of people with the disorder, so the man took his own life. The shocking news made me realize that our campaign must focus as much on the social needs of people with hemophilia as on their medical needs.
As many hemophilia patients spend their days cooped up at home with their parents, the association council and I felt it was important to teach their families a trade that would allow them to earn money and improve their lives. We tried web design and esports competitions, but neither worked out.
Then I thought of a skill I had learned in my childhood: traditional paper-cutting. In China, we sometimes cut paper into elaborate designs to give away as presents or use as house decorations. At first, I wanted to teach paper-cutting to the patients’ parents, so that they could make some money without leaving their children alone at home. Supported by the district disabled persons’ federation, I started an introductory paper-cutting class at the end of 2007. But to our surprise, a couple of patients showed up, too, despite the obvious dangers that scissors, knives, and other sharp objects pose to them.
At first, nobody was willing to shell out money for our paper-cuttings. Undeterred, I kept telling my students that customers would come once they mastered the skills. But no money came in, and few of them carried on cutting paper after the two-week course had finished.
The following year, I ran into a patient’s father who had taken part in the paper-cutting class. Once chirpy and clean-cut, he now looked run-down and bedraggled. He told me that after taking the course, he went home and taught paper-cutting to his son. When they struggled to sell their artworks, he gave some to the head of his local township, while his child gave his to his schoolteachers. Understanding that the family was short of money, the recipients insisted on giving them some cash in return for the gifts. But after doing this a couple of times, people stopped buying their products. To elicit more sympathy from others, the father started dressing shabbily to emphasize his family’s dire financial situation.
I realized that even though the Hemophilia Association had made great progress in its early years, our efforts had somewhat tapered off. Despite the fact that patients could receive treatment from the state, many families were still living practically hand to mouth. I felt like the head of a beggars’ union, constantly going out to solicit donations and share the money among members who needed cash. This approach failed people with hemophilia because it didn’t help them live with dignity and confidence.
Then, when I was out on a walk one day, I noticed a young woman carrying an oil-paper umbrella bearing the image of an elegant lady. This was my “eureka” moment.
Traditional paper-cutting is one-dimensional. Often, a completed artwork is placed in front of a light source; the light shines through the gaps cut into the paper and casts beautiful patterns on a wall. But the beautiful picture on the umbrella made me wonder if it was possible to cut multiple designs into the same sheet of paper and make each pattern look three-dimensional. Eventually, I managed to create a piece depicting a woman holding an umbrella, which gave greater depth of field than my previous attempts. Heartened, I applied for a nationwide patent, which I obtained in 2011.
By the time the patent came through, I had rounded up all my former students and established a paper-cutting company called “Jian Ai” — literally, “The Love of Cutting.” Now that everyone was employed and earning an income, they felt they had something to work toward. We paid the employees according to their productivity, which was a great motivator. When business boomed, they earned anywhere between 2,000 and 5,000 yuan ($320 and $800) per month.
In addition to layered paper-cutting, I also experimented with new ways to make our work even more expressive. In collaboration with one of our former students, we created a piece called “The New Bride,” which involved six designs cut into the same sheet of paper. From one side, the woman was silhouetted in black, but if you turned the piece over, the reverse image was a deep red. In 2011, it was auctioned off at a charity gala in Beijing for 150,000 yuan per square chi — just over a square foot. At the time, this was the most expensive paper-cutting ever sold in China.
Ten percent of all the profits we derive from paper-cutting go to the Hemophilia Association, which in turn uses some of the money to support people living with the disorder who want to start their own businesses. For instance, one of them wanted to try rabbit farming, so we arranged for him to study the trade, then helped him design a proposal and apply for venture capital. At one point, he was raising over 1,000 rabbits and made an annual income of 130,000 yuan — well above the average wage in Chongqing. He now runs an online shop selling rabbit meat, fruit, and vegetables.
My experience with the Hemophilia Association, and particularly with Jian Ai, has convinced me that people with hemophilia can contribute to society in significant ways. If we write off people with this blood disorder, we are wasting valuable human resources and practically casting highly talented people as second-class citizens. I have witnessed firsthand how fulfilling it is for long-ostracized hemophilia patients to land jobs, earn money, and even start their own businesses — like my son, who today makes a living from teaching the guqin, a traditional seven-stringed zither. All these endeavors allow people living with a life-changing condition to temporary forget their disorder, refuse to be defined by it, and face life with greater confidence.
Translator: Katherine Tse; editors: Lu Hua and Matthew Walsh.
(Header image: Sino View/VCG)
Originally published at www.sixthtone.com on February 3, 2018.