David Seymour's euthanasia legislation has been delayed. Chris Ford explains why. Photo: Lynn Grieveson
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27 May, 2019
By Chris Ford
Last Wednesday, David Seymour’s End of Life Choice Bill (EOLC) was scheduled to come before Parliament for its second reading. However, thanks to some filibustering, it’s been delayed until the next Private Member’s Day when non-government bills are dealt with.
Whatever the reasons for the delay, it’s given opponents of the legislation more time to present good arguments to the public as to why the legislation needs to be defeated. This delay also presents me with a good opportunity to say I’ve changed my mind on it and am now firmly in the no camp.
I know that this will put me in the same column as Christian conservatives who also oppose the legislation for moral reasons. Personally, this makes me feel very uneasy given that I hold otherwise progressively social liberal views on issues such as abortion and reproductive rights, LGBTI rights, women’s issues and indigenous issues, etc. Yet, I want to outline from a socialist, progressive and disability rights perspective as to why I have swung my support to the anti-euthanasia camp.
The turning point for me came about a month ago. I saw the report of a meeting hosted by disabled people’s organisation, People First (a group run by and for people with learning/intellectual disabilities) in the Central North Island. At that meeting, access to health care was discussed, as this is a key issue - particularly for people within this segment of the disability community - for whom find it difficult accessing care for many reasons, including attitudinal issues on the part of some medical professionals. This was exemplified by the stories shared at the meeting where some people – who had gone to hospital for treatment – had discovered upon reading their files that they had ‘no resuscitation’ orders attached to them. More problematically, these orders had not been requested by any of the disabled people or their families.
Personally, this brought home to me one of the key arguments of the anti-euthanasia camp: that people who are already marginalised or devalued (such as older and disabled people) would be at high risk from euthanasia. The pro-euthanasia lobby would counter that people will have the right to exercise real legal choice and that the rights of vulnerable people would be better protected within the EOLC once it goes through the remaining stages of the parliamentary process. In stating this, I acknowledge that when the legislation returns that Seymour is preparing to remove the ‘irremediable conditions’ clause, which was one of my genuine concerns with it.
The way in which society views disabled people is still largely negative and any introduction of euthanasia laws might further diminish our standing in the eyes of wider New Zealand society.
While I am pleased that he has succumbed to pressure on this issue – meaning that the legislation going forward is expected to only cover people with terminal illnesses with a diagnosis of less than six months – I have become more aware over time of the counter-arguments to even this agreed limitation (which I also initially supported).
The counter-argument is that a diagnosis is not a definitive time statement. For example, a person who is given six months or less to live today can die tomorrow, next week or at the other end of the spectrum, last even a year or many years beyond that. A diagnostic timeframe is simply a clinician’s best-informed opinion about when a person may die - nothing else. Also some people can live for many years with a terminal illness or condition and yet still enjoy a remarkable quality of life if they have the right supports and treatment. One person who illustrates these arguments well is disability rights campaigner and speaker Kylee Black, who lives with a condition that will restrict her lifespan yet refuses to be defined by it. According to the social model of disability, it is how society views people like her and the value that they place on people like her that’s important.
And that brings me to my next point about the choice element. Voluntary euthanasia proponents say that terminally ill people who fall within the law’s remit will have to prove that they are under no pressure to die and that the choice should be theirs in the end. This sounds great at first glance and this is what drew me to initially support voluntary euthanasia. Yet, I have come to learn that there is no definitive measure or mechanism that will ever be able to check as to whether a person is doing this out of their own free will or is simply being coerced. Indeed, there are far too many reported instances of the abuse of older and disabled people in our society already and this is why even the best safeguards may be vulnerable to failure in the end run.
More pertinently, the way in which society views disabled people is still largely negative and any introduction of euthanasia laws might further diminish our standing in the eyes of wider New Zealand society. In fact, anecdotal reports from disabled people in countries such as The Netherlands and Belgium (which have both adopted expansive euthanasia laws) suggest how attitudes towards the disability community in those countries have shifted to being more negative than before. In fact, all the above reasons are why Disability Rights Commissioner Paula Tesoriero has cited voluntary euthanasia as a key human rights issue given that I and other disabled people already face considerable barriers to our participation within the Aotearoa community. These include funding constraints on disability supports which – if adequately funded – can definitely improve the quality of our lives. Indeed, the Ministry of Health proposed to cut some key supports (such as home help) recently but were only stopped through activism on the part of the disability community from doing so.
Therefore, the choices that disabled and older people have are largely determined by wider society. So, if society (through government) starts stripping the supports we need to live from underneath us while, at the same time, introducing euthanasia, then the right of disabled people (like me) to exist becomes even more questioned.
And this brings me to reason now with my left-wing comrades amongst whom I understand there is considerable support for voluntary euthanasia.
One could imagine that deeper future cuts to health and disability services would see many more disabled people placed under even greater pressure by both government and wider society to feel worthless and a burden.
I do understand the arguments advanced by some elements within the left that capitalist societies dictate what we can do with our bodies and that legislating for voluntary euthanasia would allow people to take more control over their bodies from the forces of oppressive bourgeois society. It sounds appealing at first reading but one must remember that Nazi Germany and both past and current elements of the far right have been broadly sympathetic to both voluntary and compulsory euthanasia as well. Libertarians on the right are greatly enthusiastic about voluntary euthanasia on the basis that people should have full dominion over their bodies, hence, David Seymour’s and Act’s sponsoring of the end of life choice bill.
This leads to my ultimate argument – wouldn’t the legislation be an effective weapon in a time of economic austerity when spending on social services would be even tighter than it is now? One could imagine that deeper future cuts to health and disability services, for example, would see many more disabled people placed under even greater pressure by both government and wider society to feel worthless and a burden. Moreover, what if government provided support services were privatised under a future government? In my view, that would place even greater strain on services for older and disabled people.
And if you don’t believe me about the double impacts of the withdrawal of social provision and health care for disabled people, then a disabled man in a Canadian health facility secretly recorded a conversation he had with clinical staff in which he was offered free euthanisation as an alternative to receiving funding for ongoing support to live in the community. Listening to that conversation (recorded in a country where voluntary euthanasia was legalised by court order) shook me greatly too. This revealed to me the quintessential nexus between euthanasia and neo-liberalism in that if you have less choice through fewer supports, then why not take the quicker, easier and cheaper way out – death!
That’s why many progressive left wingers such as UK Labour Party Leader Jeremy Corbyn and, in the New Zealand context, long-time activist John Minto and blogger Martyn Bradbury (amongst others) have come out against euthanasia. Essentially, they hold the same position that I do in that before we can think about a good death, we need to build fair, equitable and just societies which can sustain good lives for everyone instead.
That’s how I’ve been moved to see things in recent months – how a good life can be lived and once done, a good death can follow. For that reason, Parliament needs to reject the bill and embrace real choice in living for everyone!
Disability advocate and public speaker Kylee Black, mentioned in the above article from Chris Ford, tells her story and shares her thought on the End of Life Choice Bill in the #DefendNZ documentary, ‘Choice is a relative term’ released this year. Kylee has Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder. It is an incurable and degenerative medical condition characterised by joint hyperlaxity, skin hyperextensibility and tissue fragility. She experiences daily joint dislocations and chronic, sometimes intense, pain. Because her internal organs are declining in their ability to function properly and she frequently experiences potentially life-threatening complications, Kylee’s condition is also terminal. Many medical professionals would consider Kylee eligible for euthanasia or assisted suicide under the End of Life Choice Bill, and especially when she is experiencing a life-threatening complication associated with her condition. Kylee ticks all of the eligibility boxes: the criteria for both “terminal illness” and “grievous and irremediable medical conditions”.
Watch Kylee’s documentary in widescreen and read her complete story here.