Graham Adams: Euthanasia – Who speaks for the disabled?

As the debate over assisted dying rages in the run-up to the referendum at the election on September 19, a persistent problem continues to dog the discussions. That is to say, a prominent spokesperson for a particular group takes a strong public stand in opposition without acknowledging that they don’t speak for all the members they purportedly represent.

At the moment, the most obvious case in point is Paula Tesoriero who, by virtue of her position as the Disability Rights Commissioner, is assumed to represent the opinions of all the disabled community in her unwavering opposition to David Seymour’s End of Life Choice Act.

As someone who strongly supports the Act coming into force, Diversity New Zealand’s managing director, Philip Patston, was interviewed alongside Tesoriero on TVNZ’s Breakfast this week. He told John Campbell: “I feel Paula is overstepping her mark. In her position, she should be advocating for people to have choice.”

Act’s deputy leader, Brooke van Velden, who was the backroom force behind the passage of Seymour’s bill in Parliament, was even more blunt: “It’s disappointing that the Disability Rights Commissioner has continued to politicise her role… The Disability Rights Commissioner has a duty to remain impartial and uphold the level of integrity and conduct we expect from all other state servants who fall under the State Service Commissioner’s mandate, especially so during the election period.”

Patston has a very good idea of exactly what Tesoriero’s position as a commissioner requires given he was employed by the Human Rights Commission in the 1990s and is heavily involved in disability issues, both professionally and privately. He has recently started a private Facebook group, Disabled People Supporting End-of-Life Choice (NZ), and has had 24 people with a disability join within a couple of weeks.

In an email exchange after the programme aired, he said: “The role of the Disability Commissioner is important and valuable in preventing discrimination and inequitable treatment of the disability community. However, it is not the role of the Disability Commissioner to make personal decisions for all people with a disability. In jurisdictions where assisted dying is legally available, there is no evidence that people with a disability are either over-represented or negatively impacted.” 

Furthermore, Patston points out that Tesoriero simply cannot know how many in the disabled community oppose or support assisted dying because, “There has been no research undertaken about disabled people and end-of-life choice in New Zealand. This was pointed out by PhD student Jessica Young who headed up a group of researchers at Otago University studying New Zealanders’ attitudes to assisted dying over the past 20 years.”

In the absence of local data, he referred to a poll in 2015 in the UK reported by Disabled Activists for Dignity in Dying (Dadid) that showed “significant support from people with a disability”.

Dadid is a group which believes “organisations representing disabled people should reflect the views of all disabled people, both those who support and oppose change. At present they only oppose change — giving no voice to those of us who support change.”

And there are a lot. The poll showed that 86 per cent of disabled people surveyed in the UK supported assisted dying for those suffering from terminal illnesses.

Furthermore, forty-six per cent believed disability rights groups should remain neutral on the issue of assisted dying, while thirty-six per cent believed disability rights groups should support assisted dying. Only 8 per cent believed disability rights groups should oppose assisted dying.

As it happens, the 86 per cent of disabled Britons supporting assisted dying corresponds roughly to the support in the wider British community, which has been well above 80 per cent for many years.  

In response to my query, Tesoriero acknowledged that the Human Rights Commission “has not polled the disabled community in New Zealand on the topic of assisted dying” — although she believes that is not “relevant to the question being asked in the referendum which is specific to the End of Life Choice Act”.

She argues that the Act should have included further safeguards and that her “arguments are not against the concept of assisted dying” but rather the provisions of “this specific Act”.

Before the bill was passed in Parliament last November, however, it had been heavily amended to answer the concerns she and others expressed over what they saw as insufficient protections for the disabled. As a result, the Act that voters are being asked to approve or oppose at the referendum restricts an assisted death to the terminally ill and explicitly rules out disability alone as a ground for eligibility.

Extraordinarily, Tesoriero told Campbell these major concessions were merely a “slight improvement” and argued the Act still needed to be tightened.

When I asked if she had “any reason to believe the numbers would be any different here in New Zealand” to the 86 per cent support registered in Britain, she replied: “The vast majority of disabled people who have contacted me are not in favour of this Act… Of course, some disabled people will be in favour of assisted dying and even of this Act. We are not a homogeneous entity, but my concerns are about the flaws in this particular legislation that New Zealanders are being asked to vote on.”

So, Tesoriero can’t have any idea of how many disabled people want the Act to come into force and how many will vote for it in September. Her correspondents are a self-selecting sample and therefore can’t be said to constitute a scientific poll — which means it is quite likely that assisted dying is every bit as popular among the disabled in New Zealand as it is among the general population (just as it is in the UK).

When John Campbell suggested Tesoriero’s stance on assisted dying could be viewed as being “condescending” towards disabled people, she was adamant that she was dedicated to choice: “I spend every day in my role championing for choice and control in the lives of disabled people.”

She acknowledged she wasn’t worried whether capable people like Patston could stand up for himself if the law is ratified but was concerned for those less capable.

Patston wasn’t having a bar of that argument. He made it clear that, in his opinion, Paula Tesoriero’s real responsibility as Disability Rights Commissioner is “to make sure that people who don’t have as much autonomy or control over their lives are safe… rather than taking away choice from the whole of New Zealand.”

 

Graham Adams is a journalist, columnist and reviewer who has written for many of the country’s media outlets including Metro, North & South, Noted, The Spinoff and Newsroom

This article can be republished under a Creative Commons CC BY-ND 4.0  license. Attributions should include a link to the Democracy Project.  

Image: www.referendums.govt.nz

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