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Stephen Hallett, disability rights activist with base in China, spoke with Toonari Post’s correspondent about his work and personal struggles. This is the last part of our feature on his inspiring life, continued from part 2.
Toonari Post (TP): In your view, what five words best describe China today?
Stephen Hallett (SH): I was thinking about this. (After a pause) I will say, Dynamic, Contradictory, Unpredictable, Confused and Hopeful.
TP: I heard that you were diagnosed as retinal detachment, and then had several surgeries when you were young. And I think this must have been a hard reality to face as a young man. How did you overcome the situation to become a person who is so committed to helping other people?
SH: The first time I had serious problems with my eyes was (when I was) six. Later I had more problems when I was 15 or 16, and I knew that I could easily go to blind completely. But at that time I really never worried about it, because I had very good doctors who told me everything honestly. And it was that relationship of trust that made me realize that “whatever happens I could live with it.” But it was quite scary and frustrating because I had to spend many weeks lying in hospital on my back before surgery.
Anyway, I was fortunate. I did not lose my sight completely. But I always have lived with the possibility that anytime I could have another retinal detachment and that might be final. But it has made me appreciate every moment that I can see the world, and I think I am very lucky that I do have sight. It simply motivates me to want to work with or for other people who maybe face bigger problems.
TP: But to reach that point, I think there must have been great support of your parents and family. Can you tell me about them?
SH: My parents were great. They were a big influence to me. They never said to me that I cannot do things because of my eyesight, although my father also had problems with his eyes. They always encouraged me to do more. The first time I came to China, in 1980, it was very risky. Traveling to China took a long time, and there were limited medical services, and I had many problems with my eyes that year. Now I think, “Oh God, my parents must have been scared!” but they said, “Just go, it is fine.” They cared and loved me very much, but they did not try to over-protect me. I am very grateful to them.
Also my family is very supportive of me. We have very good family. My wife, Lili, is working in London for the BBC Chinese service, so she is always interested in my work. When my daughter, Sonya, was very young, I was often busy in China making films or doing NGO work, but she has understood me and my work and never really complained about that. I often have to be apart from them for work, but whenever possible, we spend a lot of quality time together, having a good holiday and talking about everything under the sun. So I think it is always about finding a balance between work and family.
TP: Charity work sometimes can be very exhausting, since there can be many hardships or other institutional “slumps,” and also because you are mainly in the position of ‘giving’ love, rather than receiving. Can you tell me how you restore your energy and commitment for working on these issues?
SH: I usually get energy from good conversations with people. Also, reading, listening to the radio and getting new ideas from people refreshes me. I just love people. This human energy helps me very much.
In 2005 – 2006, I had some bad problems while I was cooperating with a Chinese NGO. In the end, I had to break ties with them, because they behaved very badly regarding some financial issues, as well as treating disabled people disrespectfully. They started spreading rumors about me online. It was a very difficult situation to me. But I did not try to fight with them. At first I kept silent and refused to talk to the media about it for a long time. I just put my energy into working on new projects, rather than fighting with them. Soon after all the disabled people who had worked in that organization before came out and joined me, and that friendship eventually strengthened me and our work. So sometimes people might let me down, but people are also the source of my commitment to this work.
TP: Can you give any comments or advice for the younger generation, who needs to success your work and make a better world for both able-bodied and disabled people?
SH: Firstly, look inside of yourself. Look at your own life experience. Everything that you know and have done is of value. Then think about what you really care about, and what really makes you feel excited and good. It does not really matter what it is. And focus on that and start thinking, “How can I creatively use my experience, talents and passion to make a better society?” Then, follow your heart. Everybody I know who is doing good things is doing what comes from inside of themselves. Everybody who is frustrated and angry with their lives is usually accepting things from the outside.
Photo Courtesy of China Vision