With a euthanasia bill tabled in the Federal Parliament, arguments on all sides of the debate are gathering steam, but there is one group of people who say they have more to fear than most from euthanasia legislation – those who are living with disability and battling a daily presumption from society that their lives are not worth living.
Greens Senator, Dr Richard Di Natale, earlier this year tabled the Exposure Draft “Medical Services, Dying with Dignity Bill 2014”, which was then referred to a Senate Inquiry. Hearings for the inquiry took place in October.
Among those who appeared before the Senate Committee was Craig Wallace, Convenor of Lives Worth Living, a network of Australians with disability speaking about euthanasia and eugenics, not from a religious, ideological or pro-life position, but from a disability rights perspective.
Mr Wallace says the lack of clarity and boundaries in the debate raises questions over the interpretation of words such as ‘terminal’, ‘voluntary’, and ‘unacceptable suffering’ and leaves people living with disability open to being swept up in the fatal consequences of euthanasia legislation.
“It isn’t clear that people with disability would necessarily be excluded from that,” he says.
Indeed, evidence from countries like Belgium and The Netherlands, shows that people with disability, but not a diagnosed terminal illness, have died under euthanasia laws.
“There are many disabilities that shorten lifespan. I mean, I’m a long-term wheelchair user, and I expect that will shorten my lifespan as well, and by refusing to rule out particular disabilities, it means that we are all potentially in the loop if euthanasia becomes a right,” Mr Wallace says.
“My problem with terminal illness is that while it sounds like a concrete term, nobody can describe to me exactly what terminal illness is.”
Mr Wallace says he also fears for people who acquire a serious disability, such as, for instance, a disabling spinal cord injury.
“What is to stop people demanding that right (to euthanasia) at a point in their life when they are depressed, when they’ve just acquired a disability, when they don’t understand the disability support that might be around them, or indeed, if there is a lack of disability support?
“Maybe they feel like they don’t want to be here because there are no disability supports around them. My answer to that is to go out and fight in the disability rights sector for those supports to be there.
“I believe that the person with disability is not the problem, the lack of support is the problem. As soon as we start saying, well, the solution is just to take your own life, we are saying that the person with a disability is the problem and needs to be disposed of.
“And my worry is that if euthanasia is available, people with disability will encounter a raft of subtle and overt financial, emotional and support system pressures that will attack them at a stage when they are very vulnerable.”
Mr Wallace says that euthanasia and assisted suicide also highlight the existence of a universal double standard in relation to suicide.
“For every other group it the community, be it women facing domestic violence, be it young people who are struggling with their sexuality, be it people with substance abuse problems, we counsel against suicide. We won’t even report it,” he says.
“And yet, for my group in the community, for people with disabilities, this is somehow regarded as a kind of acceptable, understandable reaction to the way that we are. I find that a fundamental denial of identity, a huge double standard, and simply wrong.”
Involving doctors in decisions regarding euthanasia and assisted suicide also raises serious questions.
“Doctors are fallible. They’re human like everybody else,” he says. “And people with disability know this only too well, because many of us have been given diagnoses, including me, by the way, that said we would never work, we would never go to university, and we would never make a valid contribution to the community, only for that advice to turn out to be completely wrong.”
Mr Wallace says media portrayals describing the murder of people with disability by parents and family members as a ‘mercy killing’, rather than murder is a further area of concern.
“This sugar-coating of murder, suicide and violence against people with a disability under euphemisms like euthanasia, is deeply disturbing to us and we worry that legalised assisted suicide might further strengthen the idea that this kind of behaviour and double standard is acceptable.”
Australian Catholic Disability Council Chairperson, Michele Castagna, says people with disability from the faith community share many of the concerns raised by Lives Worth Living and other disability advocacy groups when it comes to euthanasia and assisted suicide.
“When people ask me why I’m opposed to euthanasia, I tell them, it’s because it threatens my very existence, that’s why,” she says.
“And it threatens the existence of people with disability who come after me, as well.
“To people who say euthanasia legislation doesn’t affect people with disability, I would say, dig deeper, and look at all the issues.”
Ms Castagna, who uses a wheelchair for mobility, says many people with disability are already fearful of the medical system, and this would only increase if euthanasia became available.
“Many people are very fearful – I know them, and I’m also one of them – that when I go into hospital, and maybe I’m unconscious, people start to talk about turning off life support systems because that’s what they want. Well that’s good if that’s what they want, but you know what? I don’t want that. I want my life support to go on until I’m no longer able to go on, even with the life support. I don’t want to die for their convenience.”
She says people living with disability are also often subject to fears that they are a burden on their family, a fear that would be intensified if the option of euthanasia was available.
“Euthanasia laws are auto-suggestive,” she says. “If a person hears their family talking about them as being a burden, saying they can’t go away, or they can’t do this or do that because they have to care for them, it can have an impact, and the only way they think they can fix it is by dying.
“Our faith tells us that every life is precious, from conception until the natural end, and it’s not for us to know the reasons why.”
Ms Castagna says she is opposed to the government, through euthanasia legislation, having control over people’s life and death.
“Because they have a vested interest to keep costs down and hospital beds free,” she says. “At the end of the day the whole argument becomes predicated on economic rationale, the cost to the system.
“What we should be doing is not introducing euthanasia, but investing in proper, ongoing support for people, to help them live well. That’s the answer.”
Written by Debra Vermeer