Nova Peris (NT, Australian Labor Party) Share this | Link to this | Hansard source

It is with great sadness that I acknowledge the passing of Mr John Baylis, who passed away on 5 March in Darwin after a long battle with motor neurone disease. He was 83 years old.

John Baylis loved his life. He had 10 kids from two marriages. Originally from Manchester in the United Kingdom, he became a merchant seaman while in a boys' home and, when he qualified, he got on a boat and sailed the seas—eventually landing in Sydney when he was about 20 years old. He jumped ship and effectively became an illegal alien or noncitizen.

He took a job with Qantas which eventually landed him in Darwin and he fell in love with the Top End lifestyle. In Darwin, he had many jobs before he finally settled in as a tug master for 30 years before he succumbed to motor neurone disease, commonly known as MND, which pushed him into retirement. Mr Baylis's job included being a union delegate for the Northern Territory Maritime Union, which became affiliated with the Queensland federation under his watch. He was a salvage diver after World War II, recovering ships from the bottom of Darwin Harbour and sending them back to Japan. He loved cleaning Darwin Harbour; he loved walking on the ocean bottom in the old-fashioned, hard-helmet pearl diver's suit. He was also a land surveyor for the Department of Works. He played footy for the local Darwin Buffaloes team and he helped resurrect the Roma soccer club. Mr Baylis was a well-known and very well-respected Territorian. As a young girl growing up in Darwin, I knew him as Uncle John.

Motor neurone disease attacks the central nervous system slowly. It takes away your ability to talk, walk, swallow and breathe while leaving your mind intact. Uncle John referred to his MND as 'the monster inside' and for 15 years it progressively robbed him of his life. Sadly, there is no cure for MND. As the years went by, his disease took hold; he fought it as long as he could, until he could fight no more. Mr Baylis had a healthy and very clear mind, full of fond memories, but he used to say it was like being trapped in a useless body. He said it was like being buried alive in palliative care, and that it was barbaric torture. Eventually, he could not talk; he could not swallow, which made fluid intake difficult. MND slowly starved him. For about three months, he pointed to an alphabet chart to communicate, until he could no longer lift his arms or move his fingers.

Mr Baylis became an avid supporter of the dying with dignity legislation, and he became known as a 'euthanasia warrior' after initially being opposed to it, early in his life; he did not know that one day he would be looking for it. Uncle John was hopeful that it would again become law in the Northern Territory and across the nation so that he and others suffering could die with dignity but, sadly, this was not to be.

He supported the former Northern Territory Chief Minister Marshall Perron's euthanasia law, which passed the Northern Territory Legislative Assembly in 1995 before it was overturned by the Australian parliament, led by Mr Kevin Andrews. I know Uncle John would give his wholehearted consent for me to say how much he cursed Mr Kevin Andrews for overturning the Northern Territory's law. He once said, 'I would like to thank all of the hundreds of supporters that have lightened my load. I am past hating Kevin Andrews, but I would like him to spend time in my shoes.' His greatest pain was losing his dignity while losing his quality of life too.

Uncle John should have had the right to choose a peaceful and pain-free death. It was his wish. In our catch-ups, he urged me to continue to push for the right to die with dignity. I gave him that undertaking. He said to me, 'Just carry on fighting for the 'peaceful pill', Nova, for those that don't know they will need it later in life.'

I send my love and condolences to his family and to his wife Jan, who cared for and loved him throughout his illness. Vale, John Baylis. May you now rest in peace.