The fight of her life – for the right to die. Taiwan activist on patient autonomy law, the first in Asia
- Rose Yang learned at 19 she would spend the rest of her life in a wheelchair. Straight away she started helping people like her make the most of their lives
- Now she is celebrating Taiwan’s passage of the first right-to-die law in Asia, which she championed and, one day, will use; until then she’ll ‘live life well’
A wheelchair user, she is the major force behind Taiwan’s Patient Autonomy Act – the first such legislation in Asia – which came into effect in January 2019. Yang spent her time in office pushing for enactment of the law, which gives terminally ill patients and those with incurable diseases the right to reject life-prolonging treatment.
Yang was found to have Miyoshi myopathy, a rare form of muscular dystrophy, when she was 19 and began falling often, for no apparent reason; eventually she lost motor ability to the point that she could not stand up by herself any more. Within months she was paralysed.
Miyoshi myopathy usually affects people who are middle-aged or older. It causes weakness in external muscles – in the feet and hands, for example – and then extends to internal muscles, causing organs, including the heart, to fail. The disease affects nearly of Yang’s external muscles. There is no known cure.
Because it is very rare, research into the disease has proved difficult. It is genetic, and Yang’s two siblings suffer from the same condition.
From the day she was told she’d be in a wheelchair for the rest of her life, Yang refused to give up. Her first thought was how to lead an independent life and be able to support her parents into old age.