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28 March, 2019
It features the story of Kylee Black, a young woman from Hamilton who lives with Ehlers-Danlos Syndrome, an incurable connective tissue disorder.
Kylee, whose condition is terminal, is concerned about the implications the End of Life Choice Bill would have for her own life as well as the lives of others with terminal conditions or other forms of disability.
Euthanasia and assisted suicide are being sold as a choice – “if you don’t want it, you don’t have to get it”. But Kylee’s experience with a serious condition has taught her that choice is a relative term. Kylee’s condition means that she is heavily reliant on other people, and her treatment does not come cheap. Should euthanasia become a legal option, she feels that she would have to justify to herself and others why she uses so much resource – and she’ll wonder if she’s worthy of it. She would feel pressured to consider ‘assisted dying’.
Complementing Kylee’s story are commentaries from Hon Dame Tariana Turia DNZM (former Minister for Disability Issues and Associate Minister of Health), Dr Huhana Hickey MNZM (Ngāti Tahinga, Tainui, Ngai Tai, Crown Director and Consultant, Research Fellow and Disability Advocate), and Dr Conrad Engelbrecht (Fellow Anaesthesia and Pain Medicine, Waikato DHB).
Watch Kylee’s documentary in widescreen and read her complete story here.