20:47, September 26 76 0 theguardian.com

2017-09-26 20:47:03
Euthanasia a choice for people with disability? It's a threat to our lives

Legislation has been introduced into the Victorian and New South Wales parliament seeking to make it the first jurisdiction to legalise euthanasia since the Northern Territories brief window in the 1990s.

Like the rest of the community, people with disability debate euthanasia with many views, but a number of us are genuinely concerned that legalised suicide will encroach on our rights and see the vulnerable among us subjected to financial, social, emotional and other pressures to take our own lives.

We have cause to be concerned about perverse outcomes if euthanasia is adopted in Australia. In some countries where it has been introduced euthanasia has been offered to people with mental illness, people with dementia, twin brothers who were deaf, and even a woman with severe tinnitus.

My challenge to advocates of voluntary euthanasia who insist that here in Australia it would “never be about someone like you”, would be to ask them to specifically rule us out.

While the ink has barely dried on the Victorian government’s voluntary assisted dying bill, the legislation introduced by premier Daniel Andrews appears to have embraced the totality of the recommendations of the report of the Victorian ministerial advisory panel.

This is troubling given those recommendations bring people with disability clearly into scope. The panel recommends that disability “does not satisfy the eligibility criteria for access to voluntary assisted dying, nor does disability exclude a person from eligibility to access voluntary assisted dying”, while the bill says that a person is not eligible “only because the person has a disability”.

Confused? Well, you’re not the only one. This troubling recommendation, that euthanasia should be a choice for us without meeting the eligibility criteria, misunderstands the factors which make too many of us eligible in the first place.

As I write this I can easily picture the comments underneath – “it’s a choice” and “if you don’t want it, don’t ask for it”. They’re understandable, but they gloss over justified and reasonably held concerns.

The reality is that people like me don’t get choices in too many areas of our lives. That includes a preventative and tertiary health system that is staggeringly unfriendly to us, even if people with disability and/or chronic conditions should be their best customers.

When the panel was trying to grapple with the issue of where to draw the line for people with disability, they used an example which perfectly crystallises this lack of meaningful choices in the health system and makes euthanasia such a worrying threat to our lives.

Recommending against excluding people with disability from euthanasia, the panel gave the example of Tina, a 43 year woman old with cerebral palsy. “Fully employed as a disability advocate and educator, Tina lives independently and communicates using a communication tool. Six months ago Tina was diagnosed with an aggressive cancer for which she has now exhausted all treatment options”.

The panel felt that Tina should be offered euthanasia because her request was “voluntary and enduring”.

What’s also enduring but decidedly involuntary is the chronic lack of access to our health system for many people with a disability like Tina’s.

Back in 2003 a community advocacy group, Access for All Alliance, undertook a survey of all general practices around Australia to identify which provided access to adjustable-height examination beds. The survey showed that of the 3,553 response there were just over 14,000 fixed height examination beds and only 719 adjustable-height examination beds. An open letter from the Human Rights Commission found that in many situations patients, particularly women with disability, do not get a service at all because of the inaccessibility of fixed height examination beds. One woman had not had a pap smear for 10 years because her doctor could not transfer her onto the fixed height examination bed.

The National People with Disability and Carers Council’s Shut Out report in 2009 also gave a sobering account of the exclusion of disabled people from primary and tertiary healthcare including comorbidity arising from a lack of access to yearly checkups and health screenings.

Eight years later the national disability strategy reports very little sustained and meaningful improvement in our access to health care including for people with physical disability or communication issues. While the national disability insurance scheme (NDIS) is starting to make a difference in specialist supports, it won’t fix the health system.

On the ground, I hear from people who can’t be examined by their GP because they don’t have a height adjustable exam table. Clinics, primary care, dentists, holistic health and the tertiary health system still have significant barriers to access, especially in regional Australia.

If Tina has aggressive cancer there is a very good chance that she couldn’t even get a proper medical exam or the kinds of screening recommended for women her age. She probably couldn’t even find a clinician with the time and capacity to communicate with her.

In the real world someone like Tina is also very unlikely to have a job and to be able to afford private health insurance or even find the informal supports that other people could call on following a life changing health diagnosis. As a woman with disability she’s also far more likely to be facing various forms of violence or abuse that make life seem intolerable.

Choice? What a joke.

Sitting in Tina’s wheels people with disability are entitled to ask members of parliament: why are you hurrying to grant us the “choice” to die when you never lifted a finger to fix the barriers that made our lives miserable or gave us equal access to preventative health?

Until every person with disability has equal access to screening, prevention and treatment in our health system, suicide prevention resources, and meaningful alternatives to ending it all, offering us euthanasia isn’t an act of generous equality. It’s our Hobson’s choice – a fake, cruel one way exit for vulnerable people locked out of basic health care and other social and community infrastructure that others take for granted.

  • Craig Wallace is convenor of Lives Worth Living, a disability advocacy group speaking out about euthanasia and eugenics. You can follow him @CraigWtweets