Kylee Black: Choosing life

Kylee Black is a young woman with grit. The Hamiltonian has been diagnosed with a genetic disorder called Ehlers-Danlos Syndrome. It’s a crippling disease that leaves her in pain and reliant on a wheelchair. A cocktail of drugs taken daily is essential – as is the love and care of her family.

Kylee is a strong opponent of the End of Life Act.


“A lot my friends would not be here if euthanasia was legal,” she told the NZ Herald last year. “This Bill has a much wider catchment than old people in pain. And my life is smack bang in the middle of it.”


Kylee warns that disabled and terminally ill people are especially vulnerable to thoughts of worthless and despair. She says the possibility of assisted suicide will sit in her head like an unhelpful whisper.


“Everyone says that euthanasia is about choice, but the reality is that from the multiple of specialists that I talk to, if only two suggest euthanasia, then it leaves little space in my mind to not choose it. Medical professionals have more weight when they talk to you. I know this because I’ve had these discussions about the length of my life.


Kylee says the Bill (now an Act) creates two types of New Zealanders.


“Those who get support to live and those who can get support to choose suicide. So is my life worth less than someone with a health condition?”


Kylee spoke to the NZ Herald about her life, her bravery and her views.