Friday, March 14, 2014

Disability leader comments on Euthanasia Roundtable in Australia

This article was written by Craig Wallace the leader of the disability rights group - Lives Worth Living and published on the Lives Worth Living blog on March 13, 2014.

Craig Wallace
By Craig Wallace - Lives Worth Living

Some reflections on today’s ACT Legislative Assembly Roundtable on Euthanasia

A group of Canberra MLA’s, advocates and people in the aged care and allied health sector today got an insight into the moral, legal and political puzzle that is voluntary euthanasia.

In a useful forum convened by ACT MLA Mary Porter participants heard facts and arguments for and against euthanasia presented by two Queensland academics A/Prof Ben White and Prof Lindy Willmott.

Any legislation on euthanasia in the Territory is in reality a long way off, due to the Andrews Bill which limits the Territory’s powers in this area.

Whatever you might think of the limits on ACT self govt presented by that Bill, what the absence of legislative power does do is open the way for an exploratory discussion which throws all the facts and arguments on the table and sifts through them.

Shining this light was Ms Porters intention and I welcome it. It also makes a refreshing change for disability to be at the ground floor in a discussion on it rather than being on the receiving end of a cobbled together private members bill filled with truck sized holes.

Ask outsiders to characterise the euthanasia debate and they will often label it as emotion charged and driven by opinions and belief systems rather than facts, sometimes pointing a finger at the anti-euthanasia position.

While the majority at the forum clearly supported euthanasia or were undecided, what was interesting was that a relatively dispassionate discussion between like minds threw up a boggling array of unanswered questions, doubts and concerns all by itself.

The forum was not designed to achieve a consensus but an airing of positions. Yet my gut tells me that a significant number of people left the discussion concluding that that the ACT wasn’t ready for legislation on euthanasia and hadn’t done the groundwork anyway. Andrews bill notwithstanding. This was certainly voiced.

Ben and Lindy did a credible job of presenting the arguments for and against and unpacking terms and concepts around euthanasia. It was here, talking about words, concepts and meanings – the light and shade of them - that things got interesting.
Terminal illness

Euthanasia advocates argue that people with disability will be ringfenced from pressure to end our lives due to the practice being limited to people who are dying.

My question to the forum and our guest speakers was to ask whether any jurisdiction had landed a clear definition of terminal. Was it about how long until a person died or likelihood of death? Or some combination of both?

We are all dying by inches and many disabilities – especially acquired disability – come with a predicted shortened lifespan. Some people with disabilities are told we will be dead within a few years only to confound the experts. When does the dying that we all do become a terminal illness? When does the downhill path become a cliff?

According to A/Professor White this definition was not landed and was one of the areas that needed work. If so, it’s a big one.


Suicide is now decriminalised in all States and Territories so there was discussion about whether choosing to end your life should still be stigmatised. Should we talk about suicide at all or maybe have a term like elective death? A valid question given where the law stands. But it begs other questions which I asked at the forum.

How would we feel about a woman who was trapped in a cycle of domestic violence and feeling her life was so intolerable she elected to die? Surely we would stigmatise this, work against it and see our project as a community to end the violence experienced by her?

Suicide might be legal but we work against it and exercise a heavy presumption against. We limit media reporting. We look aghast at the ill judged disc jockey prank which went wrong and caused a London nurse to suicide. We rail against cyber bullying.

We mostly work against suicide on the basis of identity. For same sex attracted young people we work to avert suicide by helping people to understand that ‘it gets better’. There is a life after bullying, intolerance and rejection. Likewise for many people with disability there is a life after grief, the medical system and bad attitudes, but this is only possible with the right supports and working from a disability rights model. Yet there is little focus on suicide prevention work amongst people with disability.

Personal autonomy

Today’s forum began with summarising arguments for euthanasia and top of the list was personal autonomy. Personal autonomy is, to me, one of the most potent arguments for euthanasia. It appeals to the zeitgeist where individualism reigns supreme. It appeals to the innate idea that most of us have in the 21st Century that we own our lives. It appeals to me. My body, my estate.

But where does this end, especially in a market?. There is conceivably a market for anything people could sell or do with themselves and there is much that people might do. There are certainly people who would agree to sell their organs and there would be buyers for this. Does personal autonomy encompass this?

Way at the margins there is even a small market of people who want to voluntarily trade in self destruction or dismemberment. The examples most familiar in the disability community are people who want to become amputees, but at the extremes anything is possible. The most bizarre example being Armin Meiwes the German cannibal who achieved international notoriety for killing and eating a voluntary victim whom he had found via the Internet.

Back on earth we regulate autonomy all the time – to guard against the worst decisions and outcomes. There are a long list of choices we regulate where autonomy intersects with the lives and wellbeing of others, such as selling and consuming hard drugs or naming your child Adolf Hitler.

Most day to day regulation of personal autonomy occurs in financial realms and it’s happening to all of us all the time. We have legislation in some jurisdictions which requires that people make adequate provisions for their family in their estates rather than leaving their money to a cult or a celebrity they don’t know. We have cooling off periods for contracts for door to door sales and we regulate against some kinds of lending arrangements because they are so profoundly geared to ripping off vulnerable people. In Australia we heavily regulate against the kinds of housing arrangements like subprime mortgages that offer very low income people a chance to own a home, because the arrangements trade on an unacceptably high margin of failure.

Taxes are a limit on personal autonomy – they represent Government taking your income and channelling it for the common good – health, education, roads, defence and now, disability insurance.


Beyond the issue of euthanasia the ACT Forum quickly moved onto questions about the kind of society we needed to work for people who are ageing and moving towards the end of their lives. Some asked whether our project was to make the ACT a great place for people to age in. There are certainly demographic drivers to do this. The ACT’s population is ageing faster than the rest of Australia and we need to ask whether we have a city that has the transport links, the access, the social and community infrastructure needed to support people to live a happy life and journey on to a good death. A shortage of vacant palliative care beds – around 20 in a city of over 300,000 according to one participant – is not a good start.

Towards the end, one participant said she wants to end her life with happiness, celebration and recognition of what she has done – preferably before she is gone.

On this, at least, we all seemed to agree.

Craig Wallace attended a forum at the ACT Legislative Assembly on voluntary euthanasia on behalf of Lives Worth Living on 13 March 2014. These views are his own and don’t necessarily reflect the outcomes of the forum. Follow Craig via @CraigWtweets

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