Former People With Disability Australia president Craig Wallace
When explaining his position on the latest round of assisted dying proposals, Craig Wallace is quick to make something clear.
“We get some misdirection coming from the supporters of euthanasia who try to imply we’re part of a religious push and it’s actually really patronising and misleading,” says Wallace, a former president of People With Disability Australia.
With Victoria and NSW examining laws that would allow terminally ill patients to access life-ending drugs, euthanasia advocates are again doing battle with a largely faith-based opposition, fighting with renewed vigour after a narrow defeat in South Australia last year.
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But as Wallace and a small clique of highly motivated campaigners are keen to point out, it’s not just those huddled on Sunday pews who are fighting back. Behind the headline secular-religious divide, some disability advocates have been working hard to stop what they see as a serious threat to the communities they work with.
Lives Worth Living, a coalition of seasoned disability rights campaigners united by opposition to euthanasia, has been busily writing to MPs in Victoria and pushing the case against new laws via social media. Many of these campaigners find themselves in a strange position as long-time advocates for LGBTI rights, marriage equality and a woman’s right to choose, now fighting alongside often highly conservative religious voices.
Their advocacy draws on an international movement, championed in Britain by actor Liz Carr, and advanced forcefully in Australia by Stella Young before her death in 2014.
Frustrated that their case is not given significant public airing, those now carrying the flame have nonetheless gained the ear of Victorian MPs, expected to vote on proposed laws later this year.
Victorian Labor members Lizzie Blandthorn and Marlene Kairouz — who have both previously worked for the socially conservative Shop Distributive and Allied Employees Association (SDA) — emailed fellow MPs earlier this month, inviting them to a talk by two “strong women and long-time advocates for Australians with disabilities”.
“It is important all voices are heard in this debate and too often the views of the most vulnerable in our community are drowned out,” the MPs wrote.
Other major opposition groups like HOPE are also pointing to the arguments made by disability advocates to bolster their own cases.
Wallace — an atheist — is also keen to emphasise that his group comes at the issue from a human rights perspective.
“We know that people with disabilities are more likely to be physically, sexually, emotionally, and otherwise abused and coerced on a range of issues – and that’s likely to be the case with euthanasia,” Wallace argues.
Those on Wallace’s side are not convinced that checks or safeguards will be effective. At the heart of their objection is a concern that people with disabilities will be subtly coerced, pressured by a society that often presents death as preferable to life with a disability. This is exacerbated by material and practical concerns, including barriers to healthcare.
“The mainline position in the disability political community is to be against these laws,” according to Bob Joondeph, executive director of Disability Rights Oregon.
In 1997, Oregon became the first US state to legislate an assisted dying framework, and Joondeph has followed the responses of disability groups to similar laws around the world.
“It comes out of a long history of disenfranchisement and people — particularly in the medical profession but also more generally — discounting the quality of an individual’s life if they have a disability.”
As with the broader community, however, this is far from a consensus view. In Australia the issue is inspiring heated debate, one that is further fired up by anxieties about either side positioning itself as the authentic voice of the community.
Much of the fight now focuses on Victoria’s planned laws, which include ostensibly rigid safeguards and oversight mechanisms.
The plan outlined by Victoria’s Ministerial Advisory Panel says that disability is neither a reason to grant assisted dying to a patient nor a reason to deny it. If someone with a disability fits all the condition of access — including that they are expected to die within 12 months, that they maintain decision making capacity, and that the request comes directly from them — they will not be barred from access.
Tricia Malowney, an experienced disability rights advocate who sat on the Ministerial Advisory Panel, is confident Victoria has struck the right balance.
“Since the report has come out I’ve received phone calls from people with disabilities saying ‘thank you’, because they have been clear that the recommendations have said that it’s our choice,” Malowney says.
One such supporter is Justine Martin, a former Sex Party candidate who was diagnosed with multiple sclerosis some years ago, and more recently with small lymphocytic lymphoma and chronic lymphocytic leukaemia.
“All the law is doing is giving us a choice,” Martin says. “An individual choice. Not just for disabled people now but for anyone in the future who may need to use it.”
Oregon advocate Bob Joondeph says he has some concerns about his state’s laws but that his organisation has not received complaints about coercion since the Death with Dignity Act came into force.
None of this sways Craig Wallace, who has tangled with Malowney on social media. To Wallace and his allies, it’s hard to imagine someone freely choosing to die with dignity until their ability to live with it is guaranteed.
“If you see all of that in context I think you might see why some of us are concerned,” he says.