Beta Thalassemia is a common disease in some parts of the world, especially Asian countries
Beta Thalassemia causes extreme anaemia, to the point where face bones are broken down by the body in order to function.
This disease is genetic, and can be passed down by two parents who do not have the disease themselves, but are carriers. For anyone born under these circumstances life will be a constant struggle, with the only secure chance of survival resting on a bone marrow transplant.
Today I met with a family in a small city, close to Chengdu, Sichuan, China to learn more about their lives. Mr and Mrs Yu, who were both carriers of the disease, have two sons affected by it, as well as a daughter born with Downs Syndrome. However, the story they had to tell me was one of hope, instead of tragedy.
Since medical bills in China are expensive, and the two boys rely on blood transfusions every three weeks, Beta Thalassemia creates a heavy financial burden on any family. The Yu’s learnt to create hand crafted leather products, such as bags and purses, as a way of providing sufficient medical care for their children. Over the last three years they have developed exceptional skills in the art of leather carving, creating beautiful and intricate designs. All of their products are well made and represent the lengths this family will go to, in order to take care of their own.
At the moment, the sale of these products provides the only income for this family, with the majority going towards hospital bills and medical care. This means, despite the family’s incredible talent, they have been unable to significantly improve their quality of life. Consumerism in China places a lot of significance on branded names, with many handmade products being seen as undesirable, as they do not carry the ‘status’ of similar, branded items.
When talking to the family, I was incredibly struck by how unfair it was for local artisans and designers struggle to compete with big brands, simply because they don’t have the words ‘Michael Kors’ or ‘Prada’ printed on them.
Mr Yu is currently in the process of applying for his driver’s licence, so he can earn more money for his family by becoming a security guard. As well as this, the family have developed their own website which has allowed them to expand their sales platform.
They are able to personalise their products and create individual designs to order, which demonstrates their creativity and talent.
They also train other disabled people in their area, to help provide them with a sense of purpose and a means of generating their own income. It is amazing how, in a country where disability care can be considered sub-standard at best, local people are working together to develop meaning in their lives. The Yu’s have developed a respectful business which allows them to conquer any difficulties they face in life together. Representing how knowledge and training can change someone’s life in the most positive of ways. This family are self-reliant, generous and proud: they show a different side to China than the one filled with factories that we all know. They are part of a new generation of people who are using their artistic talents to improve their circumstances, and represent a more create side to China.