Recently, a senior member of my family died after a long bout of illness. She was bedridden for many years, and when she died, I told my nine-year-old son that “her suffering has ended, and the passing is good for her”.
My son then asked me if his autism will stay with the body or follow the soul after death. I was taken aback, and went around asking other caregivers for help in answering his question.
Of the many replies I received, the best one was from an adult with autism, Eric. He told me to tell my son that there are special joys in this world that only he can experience because of his autism. It is not something “normal people” can see and appreciate easily. The “suffering” he is experiencing now is because of the friction he has in adapting to the world of “normal people”. Once he sees past that, he will see that life with autism is okay, and not something to be “relieved” from.
I agree with Eric, and my son seems to have accepted this answer.
Society’s views on people with disabilities (PWDs) have a big impact on their future and place in society. Traditional views include seeing PWDs as needing to be “fixed” or made “normal”, and seeing PWDs as victims in need of pity.
A more progressive view – the human rights model – is that disability is caused by attitudinal, environmental and social barriers, and that removing these barriers would allow PWDs to fully participate in society.
MP Denise Phua called for the removal of these barriers in Parliament in October 2020, and said that there are five key areas where more needs to be done for PWDs. These include changing society’s view of PWDs, addressing gaps in provisions, and including the voices of PWDs in policymaking and implementation.
The United Nations Committee on the Rights of Persons with Disabilities also released a report on the situation in Singapore in late 2022 which made four recommendations, including a review of existing disability-related legislation and policies, and to base them throughout on the human rights model of disability.
I look forward to the Government’s response to these recommendations.
Dylan Lau Zhiliang
