Written by Lives Worth Living
Members of the House of Assembly
Parliament of South Australia
Re: Voluntary Euthanasia Act 2016
We are writing regarding this Bill which is currently before the Parliament.
Lives Worth Living (LWL) is a network of senior disability rights advocates and leaders who have concerns about euthanasia and eugenics. We are not a religious or pro-life lobby group. Our views come from a Human Rights basis.
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We are all people with disabilities including people who could come into the orbit of the Bill.
The disability community does not have a single view on euthanasia. There are many of us who are very concerned about legalised suicide for people with disabilities given the potential for abuse and perverse outcomes, and others who believe in the right to make end of life decisions for people with an illness like inoperable Cancer.
However, there is a widely held set of concerns and a view that any credible legislation must be specific and objective, have safeguards and closely attend to the UN Convention on the Rights of People with Disabilities which has been ratified by Australia.
We urge the Parliament to consult broadly and hear the range of voices on this issue.
In view of this, the current Bill before the Parliament concerns us on a number of levels:
- The Bill does not mention the UN Convention on the Rights of People with Disabilities which has been ratified by Australia. Article 10 of the Convention, which people with disabilities strongly lobbied for, provides that States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others. It is of concern that the opening sections of the Bill do not mention the Convention at all and stress equality of outcome for people with disability.
- We have made comment on a number of Bills, such as the Tasmanian Bill. However initial iterations of this South Australian Bill were exceptionally vague and problematic amongst Bills tested in Parliaments on this issue.
- We note that there have been significant amendments to the Bill which attempt to remove some issues but there are still considerable areas of concern to us.
- This is now to some extent a new Bill and this warrants consultation. Lack of consultation with the disability community on euthanasia is an ongoing concern.
- The Bill does not name the disabilities or conditions covered or exclude any disabilities, illnesses or chronic conditions instead focussing on how the condition is experienced and perceived.
- This Bill does not define a terminal medical condition and imagines that you can make a clear distinction between a person with a medical condition and a person “suffering from a disability”. Most disabilities shorten the lifespan and there is no clearly defined boundary between a shortened life span and a terminal illness.
- The attempt to excise disability in section 10 is welcome but is actually ineffectual and this is apparent in the way it is framed i.e, “a person is not an eligible person merely because the person is … suffering from a disability (however described)
- All people with disability have medical conditions that cause a disability, meaning that disability is in scope at the outset. The disability arising from a condition is caused by a lack of access to rights, access, treatments and disability. The Bill misunderstands this on a basic level.
- Further, people with disability are not necessarily “suffering” from our conditions, we suffer from a lack of rights, access and disability supports. The Bill does nothing to address these underlying issues or provide people with the advocacy supports they might need to address them in their own lives.
- In the absence of a clear definition of terminal medical condition (there is no specific timeframe) we are not satisfied that the Bill would not encompass people with disabilities like Muscular Dystrophy, Motor Neurone Disease or Quadriplegia.
- The Bill doesn’t recognise that a person’s disability is not the only factor that determines the quality of their lives in the same way that a person’s race, gender, sexual orientation, social background or other inherent characteristic may be only one hinge factor in their life experiences
- A person’s enjoyment of life can be impeded by poverty, poor supports, inappropriate housing, relationship breakdowns, experience of domestic violence or abuse, carer abuse, poor allied health care and people subjecting us to psychological, sexual, economic or physical neglect and abuse. These issues aren’t intractable or hopeless – they can be changed.
- There are many examples in SHUT OUT: The Experience of People with Disabilities and their Families in Australia – the consultation report by the National People with Disability and Carers Council.
- We would prefer that the South Australian Parliament addressed secondary comorbidity, barriers and lack of supports experienced by people with a disability rather than provide a mechanism for suicide because of them. Instead of safeguards, we need to be talking about preconditions. Like the precondition that half of us no longer live in poverty, have good access to medical treatment and palliative care, that we have the care and support to live a good life.
- LWL is concerned that the Bill creates a double standard in the treatment and interventions around ending one’s life based on disability. Euthanasia is assisted suicide and as we read it the Bill it fails to mandate suicide prevention and other counselling which may identify other issues in people’s lives which weigh in their decisions. Where counselling is addressed it is an option for the primary practitioner, not mandated. For any other group in the community – young people, LGBTIQ people, indigenous people – we do everything we can to avert suicide. Where are the suicide interventions for people with disability?
- The Act does not invite the person to indicate whether a lack of disability supports or other supports might be impacting on their decision. In the absence of a full NDIS and good disability supports LWL believes that the current broke and broken disability support system around Australia, including in South Australia, may create a raft of pressures in people’s lives which may impact on decisions. Arguably, it would enable a similar outcome to the deaths of the two twins in Belgium who took their own lives on the basis that becoming deaf/blind could be unendurable.
- We are not satisfied with decision making and safeguards by medical practitioner around euthanasia as outlined in Section 11.
- Many people with long term disabilities have endured a string of negative interactions with medical practitioners who underestimate the life chances, value and worth of people with disability;
- This occurs for a reason. Disability advocates operate from a social model of disability which assumes that barriers in the community should be addressed, whereas the medical model assumes we are the problem.
- Medical interventions are different from disability supports and in some cases people require advocacy against medical interventions or decisions. Doctors with the best of intentions are often unaware of disability supports, interventions and advocacy that make a person’s life liveable rather than just trying to cure a person’s underlying disease; and crucially
- The Bill does not even mention disability supports or advocacy.
We further do not support the administration of euthanasia by nurses. Many people with disability are in ongoing close contact carer relationships with nurses and these relationships can also become fraught and complex. Nurses are caring and decent. However, at this time we do note that some nurses’ organisations are actively campaigning for euthanasia and sadly some nurses’ organisations are also campaigning against disability rights on other fronts, such as to keep people with disabilities in large disability institutions which are places where people with disability are abused.
We are troubled by the idea of people who actively campaign for settings which work against human rights and disability rights administering euthanasia.
LWL supports the National Disability Insurance Scheme and the difference it will make to the lives of people with disability. We believe that proper support, not suicide, is the decent path to better lives with dignity for people with disability. The NDIS hasn’t been fully introduced. In the absence of these supports, we believe that people with disability may be subject to a raft of emotional, financial and personal pressures to end our lives.
While we recognise that the support system is improving, South Australia becoming the first jurisdiction to legalise euthanasia troubles us.
It’s well known nationally that disability supports at a State level in South Australia have been patchy for decades. Advocacy is also poorly supported in South Australia and there is a lack of some key supports and rights protections for people with disability. South Australia is one of a few jurisdictions, NT being the other, where there is no strong centralised peak Disabled Peoples’ Organisation governed by people with disability.
LWL also believes that there is a need for more considered national work on a range of issues at the health/disability interface and to harmonise these to avoid the risk of different human rights outcomes based on where people live.
This work should include the adoption of a National Position on Eugenics and Biotechnology by all Australian First Ministers covering issues which act on Article 10 of the UN Convention including: Assisted Suicide on the grounds of disability, Genetic Screening, Involuntary sterilisation and certain surgical procedures.
LWL believes that the Bill as it stands raises serious risks for people with disability and we hope it is defeated in the Parliament of South Australia. We are also releasing this letter publicly to contribute to community debate.
Signed, LWL Convenors