Wednesday, June 20, 2018

Wendi Wicks’ Hard Hitting Not Dead Yet Oral Testimony Against NZ End of Life Choices Bill

This was published by the disability rights group, Not Dead Yet, on June 16, 2018.

Wendy Wicks
Not Dead Yet Aotearoa
By Wendy Wicks (June 11, 2018)

Kia ora koutou, and thank you for the opportunity to present this submission. I am Wendi Wicks and I am the convener of Not Dead Yet Aotearoa, a national network of disabled people opposed to the legalisation of assisted suicide and euthanasia.

We in Not Dead Yet Aotearoa have some of the best personal stories you would ever hear about the brutal realities of living with grievous and irremediable conditions and we live it every single bloody day. Ah the stories…

But this process here should not be a pissing contest to see who’s got the most gruesome headline, the most heart-rending individual story. It’s about a bill for all of us, the law is there to protect us all as a whole.

This bill is about policy, culture systems and justice. That means: you have to see this bill for its entirety, and not just aspects that appeal. You have to think about the public good-thats all of us, and that means you have to pay as much attention to group rights as you do to individual rights.

You have to see what its impact would be on disabled people, who struggle every day to get the help and respect they need to live their one and only life to its best.

You have to see that at the very heart of this bill is a primal fear of becoming disabled. To put it in the words of Baroness Jane Campbell (a disabled peer) “…society’s view of terminal illness and [of] disability I think can be summed up in one word. That word is fear: fear of loss of opportunity; fear of denial of self-determination; fear of loss of control; fear of pain; fear of hardship; fear of being a burden to others”.

Does that attitude of fear and diminution of disability that runs through society and is utterly embedded in the words of this bill offend me? Absolutely, and to the marrow of my bones.

But more than that, it scares the shit out of me that it seems to be taken for granted that how disabled people live everyday lives is dire and dreadful and not worth it. And because if this bill passes it would be Parliament agreeing that people – especially health workers – could look at me and my friends and say “I wouldn’t want to live if I was like you” and sign off a piece of paper to make that legal.

Let me be clear: I don’t want your pity. I want your protection. I demand your protection for disabled people’s right to live in the absence of choice of the privileged.

And let’s be very very clear that there can be no protection, there can be no “safeguards”, in a bill that starts with the implicit proposition that it is better to be dead than disabled. That’s choice? Really?


So the first key message we have for this committee is this: this bill would put disabled people hugely at risk in a society where we are already marginalised, feared and discriminated against. NDYA does not support a bill that ignores our rights, our collective rights, and in doing so puts our individual rights even more at risk.

When we have the NZ government reporting to the international monitoring committee for the Convention on the Rights of Persons with Disabilities that disabled people in NZ are disadvantaged, discriminated against and have a lower quality of life it should be plain to see that we don’t need any more barriers. It would be far better to see all NZ governments make active and sustained efforts to give equity to our lives. That mean all disabled people can make choices in their living with the supports they need, not just a choice to die.

We do not, will not accept the situation this bill would entail, where “The real question…is how much risk to the vulnerable we are prepared to accept in this area in order to facilitate suicide by the invulnerable.”

Second, and I can’t over-emphasise it -this bill is absolutely about disability. There’ve been concerted messages that the bill is nothing to do with disability, that it’s all about some other people, and would you please move along and behave yourselves?

Those who say it isn’t haven’t read the bill. Clause 4(d) says that to be eligible you have to be in “an advanced state of irreversible decline in capability”. Now ‘decline in capability’ is code for disabled, whether the impairment is from birth, acquired from illness or injury or from ageing.

To put it another way, again using another bit of the bill’s wording of ‘terminal illness’, while not everyone with a disability has a terminal illness, all people with a terminal illness have a disability. Further, the proposed criteria would cover disabled people who are not immediately terminal. So you tell me: how much of my sight or my hearing or my speech or my movement or my memory do I have to lose before a doctor can legally decide that I’m better off dead? Because the bill surely doesn’t tell us.

A third message is that the idea of choice this bill promotes is a sad shabby figment. You need to keep in mind that choice- an underpinning of this bill- will be, to disabled people, like the choice poorer people have in supermarkets- a choice with fewer options; a choice with more illusions than equality.

There’s this idea that choice is unbounded and it must always be a good thing. But choices are much more complicated than just a “choice must always be the best thing” approach. It’s all in the context- what are the actual circumstances where that choice gets made? And why would you think that could possibly get codified into a law to adequately protect everyone?

Am I saying choice is therefore bad? -no indeed. What I am saying is that there are a million squillion things that make what choice means for me different to choice for you, you or you. Here’s a hint: non-disabled people will have more options on the drop-down menu of choices. And as a verbal disabled person, I’ll have more choices than a non-verbal or learning disabled person or someone with autism. So, this bill will codify, enshrine choice? Give me a break! To think one can promote equitable fair and ethical choice in this bill is a figment.

Finally and reinforcing what has just been said, the words the concepts that are used throughout this bill- criteria, definitions are hugely used to describe disabled lives and their use accords our life a lesser value. That is just not adequate.

Assisted dying is the equivalent of a zero-hours contract with life In summary, the bill is unjust, dangerously flawed in thought and in wording. NDYA has not detailed the gaps. A patch-up job on this would not be useful, as it would be bad law, and bad for the public interest. NDYA urges you strenuously to remember that individual choices are not a good basis for legislation that would put the public interest last and make disabled peoples’ lives even more dispensable.

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