The following article was written by Kevin Fitzpatrick and published on the Not Dead Yet UK blog on October 28, 2013. Kevin Fitzpatrick is also the executive director of EPC - Europe and he will be speaking at the Euthanasia Symposium 2013 on November 8/9 in Toronto.
By Dr Kevin Fitzpatrick.
Have you heard of the new Disabled Activists for Dignity in Dying (DiD)? And their claim that 75% of disabled people support assisted suicide/euthanasia? Is that really true?
And why should DiD feel there is any need for a ‘disability voice’ FOR euthanasia? There is no special pleading necessary for disabled people under their proposed law. Or are they arguing for disability rights for euthanasia? That makes no sense (as Paul Russell, CEO of HOPE pointed out recently).
DiD have always claimed their campaign is not to change the law for disabled people, but is meant to help those with only a few weeks or months to live.
Therefore, is DiD really a lobby for assisted suicide for all disabled people and sick people, rather than people who are very sick and soon to die?
Remember the report of the self-styled ‘commission’ funded by DiD recommends that physician-assisted suicide should not be offered to people with disabilities who are not terminally ill ‘at this point in time’.
So what is DiD’s real reason for suddenly claiming the support of a huge percentage of disabled people? – indeed what is their real objective?
It is true they are all disabled people. However they are individuals with a point of view, not representatives of any Disabled People’s Organisation. For example, this new arm of the DiD campaign, is led by wheelchair user Greg Judge. He is listed as a member of staff and is therefore paid by DiD to represent the organisation's core mission and values. Hardly representative!
NDY UK, on the other hand, is a network of disabled people working largely pro bono and who have been mandated to represent the views of many disabled people. There is a real difference.
And, to date, the majority of disabled people I know are either entirely against or have huge reservations about changes to the law on assisted dying.
Another DiD ‘activist’ is Lucy Aliband whose impairments resulted from a traumatic road accident; she joined this year after her experience of her mum’s death and like Sally O’Connor, who was diagnosed with MS, is naturally dealing with constant personal changes which will inform her view. The last is Melanie Reid, a journalist who also faces her own personal challenges having become quadriplegic just two years ago and who thinks it makes no economic sense to ‘keep people alive’. You can read her other opinions in the Times (March 27, 2012) where she indulges herself, in name-calling and unhelpful tirades. No evidence, no counter-argument. Melanie Reid refused to engage with me in any kind of honest debate.
This is the basic line up of Disabled Activists for Dignity in Dying. Does it sound representative to you? Just calling them ‘activists’ does not make it so.
Baronesses Campbell and Grey-Thompson, and others involved with Not Dead Yet UK, have a long and distinguished career of representing large numbers of disabled people’s rights through democratic structures and processes.
In the world of legitimate disability activism one thing is clear: we are required to seek the views of large numbers of disabled people in order to speak on their behalf - it is called democracy! That’s what we do.
I therefore question the legitimacy of this new group of disability activists on the basis that they do not represent disabled people but are self-appointed members of DiD who only represent themselves.
75% of disabled support assisted dying/euthanasia? Well, no actually.
So where has this figure of ‘75% of disabled people want their right to die’ come from? DiD source it in the British Social Attitudes Survey 2007.
Now why the BSA 2007 and not the latest available survey of 2012? The BSA’s own search tool reveals the following results for keywords/phrases: ‘assisted suicide’ 0; euthanasia 0; dignity 0; dying 1 (but that last appears in the report about relationships and nothing to do with assisted suicide).
But the authors of the 2007 report say:
... and perhaps more importantly, in contrast to the results of the 1995 survey, those with a disability are not more likely to support assisted dying. Indeed...their average score on our scale is actually slightly below that...amongst those without a disability
BSA conducted 3,248 interviews, and asked 4 questions in the disability ‘section’ of the 2012 survey none of which related to assisted suicide/euthanasia but were about prejudice and whether disabled people can live full lives. The number interviewed was around 2,100 for each of these four.
In 2007 from the ‘Number of units: 4,124 cases’ so far as I can see, the upper limit was just 2,176 people. Not everybody surveyed is asked all the questions or responds – so the results are based on about 50% of those surveyed. The surveys are generally carried out ‘by computer assisted personal interviewing’ in which ‘some questions are asked regularly, others less often’. The earlier report cites categories like ‘care of the disabled’ – no activism (nothing about us without us) here then.
Specifically, these survey results are based on a further survey of ‘respondents to our 2005 survey’ so people who had already been asked these or similar questions two years before. But the authors also mention their seminar (NB not seminars, plural – just one seminar).
This is a public attitude survey. I can find no reference to specifically disabled people, let alone disabled activists, in responses either being reported or even collected in this report. Disabled people just do not appear as any distinct group of respondents. People with terminal illness and specific impairments do appear – they are the groupings used by the survey authors to get respondents to consider whether they are candidates for assisted suicide/voluntary euthanasia or not. They go on to say:
Intriguingly, support was particularly low when the scenario mentioned a specific condition – severe arthritis. Only one in three felt that having this condition would render voluntary euthanasia acceptable. Perhaps some people underestimate the pain that those with severe arthritis can suffer – or perhaps they think voluntary euthanasia should be reserved for ‘exceptional’ circumstances, and that arthritis is simply too common a condition to be regarded as sufficient grounds to permit euthanasia. These findings suggest that the public does not regard voluntary euthanasia in the black and white terms in which it tends to be regarded by its advocates and opponents.
But that it precisely our point: as ‘opponents’ we are constantly resisting DiD’s portrayal of this as a simple issue – taking the life of any human being should always be terrible, in the sense that it should never be a light consideration, even if the person is already close to death.
Clery et al note Donnison and Bryson’s finding (1996), based on the 1995 British Social
Attitudes survey, ‘that people with a disability were more likely to be in favour of assisted dying, perhaps because they had greater empathy with those in pain’. I cannot access this report (it is not available directly on the NatCen site and I have as yet been unable to find it elsewhere). But in any case, even if they said ‘75% of disabled people...’, then that was the better part of 20 years ago. And I think we can have some serious doubts they even considered disabled people as a separate group, let alone disabled activists.
So what are we left with?:
DiD claim 75% of disabled people support them – I can find absolutely no evidence for this assertion I can find no hard evidence that any but a handful of individual disabled people including those in DiD employment, generally support their claim. In fact disabled people’s organisations are implacably opposed are opposed to a change in the law.
The survey quoted above was based on 0.003% of the population.
Therefore I challenge DiD to explain how they have come up with the figure of 75%. Where is their evidence to support their claim?, I can only suggest this is just more propaganda unless and until proven otherwise.
So let’s now turn the question of what is DiD’s real motive?
By Lord Falconer’s own admission any law would affect a maximum of 1,000 people a year. I would suggest that a number of those would have serious second thoughts if they could access the very best in palliative and social care support.
Any law must, by its nature, be general covering everybody - which is why it makes no sense to make a special pleading for disabled people. The law will be there for not just the fewer than one thousand, but each and every one out of the 600,000 six hundred thousand who die in the UK every year. So where are the voices of the majority who do not wish to commit suicide? Again, the question is this democracy?
I have engaged in many debates against many people, especially on moral questions like this: usually, I can see the integrity of my opposition. I may not agree with them, but I can see how they might have arrived at their position honestly. I can respect them in some ways (depending on the extremity of their moral position).
But I cannot see any integrity in DiD’s approach here. They have started another part of their campaign based on the so far entirely unsubstantiated claim that 75% of disabled people support them. If this is completely false, as I think it is, their choice of the word ‘activists’ to describe the four signatories is also instructive – some might wonder whether it is just part of another attempt to break down our Resistance – divide and rule has long been a cynical ploy.
DiD know what the evidence shows - from Holland, where children over the age of 12 are entitled, and disabled babies are euthanased because of their disability, or because of their parents’ suffering, when the law was first introduced for exactly the kind of ‘desperate, hard case’ DiD keep promoting to gain public sympathy - from Belgium where people who are in need of support and care are euthanased – and where the current discussion to extend euthanasia to children is proceeding but where ‘We all know that euthanasia is already practiced on children. Yes, active euthanasia’ according to the head of the intensive care unit of Fabiola Hospital in Brussels. He made his comments to the Senate's Judicial and Social Affairs Committee at a February 21 hearing 2013. Belgium, where if you are becoming blind you can opt for euthanasia, or if the healthcare system botches your sex-change operations your care options can include death by lethal injection, and where ‘studies...demonstrate that 32% of people killed under the Belgian law were killed without consent and without their own request, in breach of a fundamental condition of that law’(as pointed out by Alex Schadenberg of EPC). A recent judgement by the European Committee on Social Rights found that that Belgium’s ‘inadequate provision of care and accommodation for highly dependent persons with disabilities amounted to a violation of human rights’. The importance of this is self-evident as to whether disabled people have any real choice about accepting the final option.
The situation in Oregon is often held up by DiD as exemplary: Oregon, where choice really is an illusion, where doctors write a prescription for lethal medication and it is not necessary for the person themselves to take it away, this can be done by a family member or patient representative, with all the inherent dangers this presents, Where the lethal drugs can be taken several years later and there is no requirement for an investigation, even though the drugs were administered a considerable time after they were prescribed.
[All] the protections [in Oregon’s law] end after the prescription is written. [The proponents of assisted suicide] admitted that the provisions in the Oregon law would permit one person to be alone in that room with the patient. And in that situation, there is no guarantee that that medication is self-administered. So frankly, any of the studies that come out of the state of Oregon’s experience are invalid because no one who administers that drug . . . to that patient is going to be turning themselves in for the commission of a homicide.
All this information is in the public domain so DiD have presumably decided it doesn’t help their case to share it with their supporters. They press on with their demands, courting public opinion without ever revealing the deeper truths or engaging honestly with the counter-arguments, instead they resort to labelling us as ‘cruel’ for opposing such a law. (I have had that criticism levelled at me more than once, as I’m sure have others. What we are actually saying isn’t cruel we simply want others to understand:
‘there’s so much wrong here, let’s stop and think about it more carefully’). No-one in DiD seems to consider the impact their high-octane campaign has on the lives and the feelings of the 4,400 families each year who have suffered a suicide.
Finally DiD are promoting themselves as a caring organisation who offer the ‘voice of reason’. They are using a handful of non-representative disabled people to promote the idea that disabled people agree with them. The facts do not support this assertion, real disabled activists are opposed to the law being changed and nothing I have read, seen or heard makes me think otherwise.
So again, I find myself asking: what is their real purpose?
Dr Kevin Fitzpatrick OBE
Elizabeth Clery, Sheila McLean and Miranda Phillips ‘Quickening Death: the euthanasia debate’ (in Park, A., Curtice, J., Thomson, K., Phillips, M. and Johnson, M. (eds.) Perspectives on a changing society (2007 London: Sage), British Social Attitudes: the 23rd Report
 Senator Jeff Essman quoted in The Oregon Studies are Invalid Margaret Dore http://www.choiceillusion.org/p/the-oregon-studies-are-invalid.html