Kylee Black has already had end of life conversations with doctors.

The 31-year-old suffers from Ehlers Danlos Syndrome [EDS], a genetic connective-tissue disorder that is progressive and incurable.

But Black does not want to die. And she does not want doctors suggesting death as an option to her, especially on her darkest days.

"I personally have seen over 20 specialists through my local district health board. If I was asked to consider my options as things progress by even a handful of these, I would certainly feel very pressured to consider euthanasia."

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Black is talking about the End of Life Choice Bill, currently before Parliament, which if passed into law would make her eligible to choose to die legally.

A video campaign dubbed #MyLifeMyChoice, launched last month to support Act Party leader David Seymour's bill, focuses on people with terminal illnesses.

David Seymour (not the MP), who has motor neurone disease, comforts Bobbie Carroll, who has blood cancer, at the launch of the #MyLifeMyChoice campaign. Photo / Greg Bowker
David Seymour (not the MP), who has motor neurone disease, comforts Bobbie Carroll, who has blood cancer, at the launch of the #MyLifeMyChoice campaign. Photo / Greg Bowker

However Black wants to highlight how the bill could affect a disabled person.

Of greatest alarm to Black and the disability sector is the inclusion in the bill of people with grievous and irremediable medical conditions.

Black is not alone when she says this term is ambiguous and vague, and opens disabled people up to pressure and even coercion to end their lives early.

"We have been in dark places, and I know for myself there is a high chance that I would not be here today if euthanasia was legalised earlier in my journey."

During Black's most recent hospitalisation she was bedridden and in debilitating pain from the umpteenth dislocation.

Complications from her condition led to a sepsis infection and she was eventually discharged confined to her wheelchair, with nerve damage in her leg and arm from the dislocation.

But Black does not give up. And she does not want those charged with her care to give up either.

"It only needs one doctor to have a conversation [about euthanasia] for it to plant the thought, for one to start considering it.

"We all have times of struggle. We all grieve. But if we can truly be supported through that time, we can go on to find meaning and quality in life again, despite the struggles that we may face each day."

Submissions on Act party leader David Seymour's End of Life Choice Bill closed yesterday. Photo / Andrew Warner
Submissions on Act party leader David Seymour's End of Life Choice Bill closed yesterday. Photo / Andrew Warner

Black, once a fully abled person, has submitted against the End of Life Choice Bill and said its clear message to the disability community was, "People are better off dead, than disabled".

"Some people will be more vulnerable to external circumstantial pressures, and this is putting them at further risk rather than supporting them. How is that a fair, individual choice?"

She pointed out that the bill in its current form does not address whether a doctor is allowed to raise euthanasia with a patient. And that a doctor is not permitted to dissuade a patient from euthanasia if they are eligible.

"What happens if I, as a young person with an irremediable condition, wheel into a doctors and say, 'I'm suicidal, my life has suffering. I want euthanasia', and a person without a health condition goes in and asks for the same thing?

"For people not eligible for euthanasia, support to live is given. Does that mean healthy people get access to suicide support, but those with an incurable disability do not?"

Disability Rights Commissioner Paula Tesoriero said the End of Life Choice Bill undermines years of work to change perceptions of disabled people in New Zealand and poses significant risks to them.

"It's my role to reflect the concerns of the disability community and what I am hearing is that there are significant concerns about this bill, particularly the inclusion of grievous and irremediable (but non-terminal) medical conditions," Tesoriero said.

She said the bill had wider implications for the disability community and was not just limited to terminal illness.

"Before we start talking about how disabled people can end their lives, we should be talking about how they can be supported to live their lives to their fullest potential.

"In its current form, the bill undermines the position of disabled and vulnerable members of our community. It devalues their lives and poses significant risks to them, as individuals and as a group."

IHC director of advocacy Trish Grant said the bill's current wording around grievous and irremediable medical conditions was ambiguous and implied the burden of any kind of medical condition could be justification for ending someone's life.

"Further, the bill assumes all people in New Zealand have access to the same level of care and support to enable them to have the best quality of life and therefore able to make an informed choice about their right to die.

"But we know people with disabilities do not receive the same level of care and support."

She said the "unintended consequences of the bill needed to be acknowledged and remedied" before any comprehensive decision could be made.