Cross posted from Lives Worth Living.
On Friday, 3 October 2014 Lives Worth Living Convenor Craig Wallace addressed the Senate Inquiry into the Exposure draft of the Medical Services (Dying with Dignity) Bill 2014. This is the prepared text of our opening remarks to the Inquiry:
Firstly Senators thank you for this opportunity to give evidence here today and also for accepting a late and brief submission.
It's been an interesting and busy time in the disability community in the aftermath of the Budget and our advocacy on the National Disability Insurance Scheme.
If it is helpful I might talk a little bit about where we come from and then perhaps fill out a bit of detail around the bill.
Lives Worth Living is a network of Australians with disability speaking about euthanasia and eugenics. We are not a mass membership organisation but we are a group of influential advocates who have come together because we have shared concerns in this area. We are akin to a ginger group or a group of thought leaders.
We have a core group which is Joan Hume, John Moxon, Daniel Pask and myself as well as around 300 people who engage with us on social media.
Probably the uniting factor is that all of us have significant disabilities and we lead or have lead organisations in our community. Another point of difference is that we do not come from a religious, ideological or pro-life position. We come at this from a disability rights perspective.
I am also the elected President of the National Peak cross disability consumer body for disability called People with Disability Australia. And while I am not here representing PWDA in this hearing that organisation also has concerns about safeguards and very grave doubts about the introduction of voluntary euthanasia without a level playing field. I think it is true to say the centre of gravity on this issue is shifting in our community and it is shifting towards increasing doubts and concerns about a presumption that our lives aren't worth living.
Turning to the Bill
I want to say that I have an intrinsic sympathy with the idea that our bodies are our estate and if you had something like terminal bowel cancer that you might want to die.
In many ways I think that kind of condition is the diagnostic face of euthanasia.
In a world with total empathy and where we all understood what we meant all of the time - I might support voluntary suicide.
But we don't live in a world of clarity, so my concerns are about definitions of words like 'voluntary' and 'unacceptable' and how they will be interpreted by mortals.
And many of us in the disability community will happily regale you with stories that Doctors are mortal whether you have one or two or three of them.
There is nothing like being told that you were going to be dead years ago or never able to work to focus your mind on the subjective nature of medical opinion.
There is not some kind of clear dividing line between disability, illness and a medical condition which means that you can neatly quarantine the effect of the Bill to one set of people - unless you were to actually name the illnesses involved.
The Bill defines terminal illness as one which, in reasonable medical judgement will, in the normal course, without the application of extraordinary measures or of treatment unacceptable to the person, result in the death of the person.
It also mandates that a person needs to experience pain, suffering, distress or indignity to an extent unacceptable to the person.
I am not satisfied that this would not apply to the people I represent on a reasonable reading.
For instance, I have known many people who have incurred high level spinal injuries and I would be concerned about how this kind of disability might be viewed within the Bill.
When does an illness become terminal? - Most medical practitioners would say that a disability like this shortens the lifespan. There is no clearly defined boundary between a shortened life span and a terminal illness.
What are extraordinary measures? - having a catheter or a diversion or a stoma or a ventilator or all of these, or any one of a number of interventions might fit this.
When is Pain, suffering, distress or indignity unacceptable to a person - a person with that disability might be unable to move, eat, walk or shower or evacuate their bladder and bowels without the support of another person.
There is pain, there is distress, suffering and indignity around that.
I know people with disabilities that look like this. And at the time they acquired their disabilities they have told me they want to die.
Yet I have talk to them a year or two years down the track and they have gone on to live lives that are different yet productive, meaningful, including raising a family and resuming a career.
The degree to which a disability is acceptable depends on the level of disability supports, technology and adaptive aids, formal and informal help around that person at a point in time.
It also depends on time. This changes - back and forth. There are good times and bad times. Sometimes it changes due to issues that have nothing to do with the disability.
We work with people who are in pain from things that relate to a lack of accessible health or dental care. We also work with people who are subjects of abuse - mainly from people close to them and sometimes as the result of the wrong kinds of care.
LWL supports the National Disability Insurance Scheme and the difference it will make to the lives of people with disability. We believe the 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 subjected to a raft of subtle emotional, financial and personal pressures to end our lives.
I do not believe that we have done everything that we can to make people's lives acceptable. For instance medical cannabis - this is one treatment where there a slow turning of the wheel of public opinion for those experiencing pain and nausea.
The Bill creates an offense around influencing a doctor to provide dying with dignity services. But the coercion I am worried about is not dr's - it is the coercion of people with disability to take their own lives. People who might already be in abusive relationships. Who might be seen as a financial or logistical burden by their families. Who might be threatened with the loss of their disability supports.
The coercion does not need to be of a criminal or sinister caste - it could simply be the family withdrawing support and a young man being faced with life in a medicalised nursing home surrounded by dementia patients and 5 year old copies of New Idea.
Involuntary euthanasia is already a concern. Many of our people afraid of going into hospital in case they are denied food and hydration.
I oppose introducing euthanasia in a toxic climate. Many of the public debates around disability position people as better off dead. As people who are wasters, leaners and who make no contribution. You do not have to look hard to find people advocating involuntary sterilisation and the removal of people with disability on the basis that we add no value. You do not have to look hard to find stories - including on the front pages of our newspapers - that label all people with disability as useless and a drain on society.
There is a double standard in the way we treat suicide and disability. We can call this ''dying with dignity'' but the reality is that euthanasia is suicide in the same way that enhanced interrogation is torture.
For any other group of people in the community who were contemplating suicide, such as women trapped in a spiral of domestic violence, we would see our first project as directing them to lifeline or suicide counselling to find out what is going on.
The Bill fails to mandate suicide prevention and other counselling which may identify issues in people's lives which weigh in decisions.
In the Bill, where counselling is addressed it is about a Doctor making a person aware that its available.
We 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. Life also gets better for people with disability - so why are my members the exception to this? It is a bias. It is a view that we are better off dead.
We don't believe that people have equal choices. Voluntary an imperfect concept in families at the best of times - let alone a family under stress
How to protect people who use supported decision making or facilitated communication is unresolved - and I don't claim to know how to.
What I do know is that we don't trust families and drs to support decisions. Guardianship arrangements changing and blurring under the NDIS.
Arguments about slippery slopes often have the odour of intellectual bankruptcy. Yet with this issue there IS a slope - in every jurisdiction where it has been introduced euthanasia has spread to a much wider group of people than intended.
Belgium has seen the extension of euthanasia to a much wider range of people than were initially included - depression, anorexia, deaf people and then children.
Even here euthanasia campaigners just keep moving the ground. Last week it was life prisoners.
Lastly the Bill does not provide protections under the UN Convention on the Rights of People with Disabilities which has been ratified by Australia. Article 10 of the Bill, 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.
Senators, it is the last part - the equality of outcome - that is most important.
Euthanasia is not acceptable to people with disabilities until we have the same supports, rights and opportunities for a good life which are available to other Australians and make our lives worth living. Thank you.
Postscript: In the follow-up questions from the inquiry some discussion focussed on whether disability and terminal illness were different. I repeatedly asked the author of the Bill, Senator Richard Di Natale, whether there was a settled definition for terminal illness. The Senator was unable to supply one.
Lives Worth Living urges the Senate to oppose the Bill.