Month: August 2015

Reclaiming Our Futures Alliance Statement

We are opposed to legalisation of assisted suicide. It will remove equality and choice from disabled people and further contribute to our oppression. If the Assisted Dying Bill is passed, some Disabled and terminally ill people’s lives will be ended without their consent, through mistakes, subtle pressure and abuse.  No safeguards have ever been enacted or proposed that can prevent this outcome – an outcome which can never be undone.

With two Assisted Dying bills currently before parliament, it is really important that Deaf and Disabled people and our organisations speak out loudly against the legalisation of assisted suicide and raise awareness of the threat this poses to disability equality.

Our message is that we want support to live not die. At a time when essential support is being taken away from us, when the challenges we face are exponentially growing as a direct result of adverse government policy, it is more dangerous than ever to introduce legislation which encourages suicide as a solution to the barriers Disabled people face.

We say: give Disabled people a right to independent living before a right to suicide.

Below are different ways that DDPOs and Disabled campaigners can take action and get involved. We realise that not everyone has the time to do everything but anything you are able to contribute to the campaign would be valued.

DDPOs

• Sign up to the ROFA statement (above). It is extremely important we can evidence that Disabled people and our organisations are opposed to assisted suicide to counter the arguments of those in favour of the bill who present it as progressive legislation. Email your organisation’s name to ellen.clifford@inclusionlondon.co.uk.

• Write to or arrange to meet your local MP (even over the Summer they will be receiving and responding to mail). You can download a template letter here. Please send us copies of any responses you receive.

• Tell your members about the campaign and how they can get involved – you could adapt this information for a newsletter article or website post or include the Assisted Dying bills on your next campaigns/speaking up meeting agenda. Support as many of your members to make contact with their MP over this issue as possible.

• Help publicise the facts about assisted suicide, for example send a letter to your local paper.Download the Assisted Suicide Open Template Letter for Media here.

• Dates for your diary – publicise the events happening below, send representatives and support your members to attend.

Individuals

• Sign up to the ROFA statement. Email your name to ellen.clifford@inclusionlondon.org.uk

• Contact your MP – you can use our template letter here. Please send us copies of any responses you receive.We are also encouraging Disabled people to meet their MPs to put forward your views in person. Some MPs are organising public meetings to canvass the views of their constituents – check their websites to see if your MP is one of these.

• If you have a personal story about this subject which informs your view on it and which you are willing to share please let us know. We are also looking for Disabled people who are happy to speak to the media about why we oppose legalisation of assisted suicide.

Dates for your diary

• 13 August 2015 (1.30 – 5.00pm)
  Assisted Suicide Briefing Day for DPOs and Disabled campaigners
  organised by Inclusion London, Not Dead Yet UK and Disabled People Against Cuts (DPAC).

• 11 September
  Not Dead Yet UK/DPAC Protest.
  Gather outside Parliament to show our opposition to Marris’ bill while it is being debated inside. Meet Old Palace Yard (opposite the House of Lord’s) from 9am.

Is your MP one of the named supporters of Marris’ bill?

DPAC is encouraging campaign groups to organise protests outside the constituency offices of those MPs who have put their name to Marris’ Assisted Dying bill. If you would like support to organise a local protest or for more information contact Mail@dpac.uk.net

(See http://www.publications.parliament.uk/pa/cm201516/cmhansrd/cm150624/debtext/150624-0001.htm#15062462000011 to check if your MP is named.

In ‘Real disability activists and masquerades’ I countered the spurious claim that 75% of disabled people support assisted suicide/euthanasia. The so-called ‘poll’ from which that nonsense figure ‘appeared’ was the British Social Attitudes (BSA) Survey 2007. That survey yielded no information of the kind, and did not even mention: assisted suicide or euthanasia or ‘dignity’. So the claim, based on that work, had to be simple propaganda.

A follow-up poll, commissioned by promoters of euthanasia/assisted suicide law in Britain, asked four questions, three of which were simplistic one-liners. But ‘Question’ 1 was a long rehearsal of the proposals of the Falconer Bill. It could and should have been divided into at least 7 different questions. So to ask ‘Do you agree with assisted dying?’ at the end of that  much detail was also sheer nonsense – no-one could be clear what they were answering – and especially when the word ‘suicide’ was replaced by ‘dying’ to confuse matters.

This continues to beg the question ‘What is the real motive of people making spurious claims about disabled people’s support for euthanasia/assisted suicide?’ The pro-euthanasia/assisted suicide lobby continue to claim (now 80%) support amongst disabled people, but consistently ignore the majority opinion as expressed through Disabled People’s Organisations (DPOs), that such laws are not just dangerous, they threaten disabled people most of all.|

The other rather stupid claim they make is that a press to legalise euthanasia/assisted suicide has nothing to do with disability matters – yet they constantly play on the most severely disabled people as ‘piteous’ throughout their use of the media to promote their aims. This contradicts their every protest that disabled people will be safe, especially now when the most recent publicly shared deaths are not of terminally ill people, nor of disabled people but those people who declare they are so afraid of becoming disabled they would rather die. We who have lived disabled lives for many years can only watch as those with virtually no experience of being disabled reinforce the worst of these false messages ‘Being disabled is a fate worse than death’. We wonder who has been advising these people, leading them to believe this is, or must be true, and to take their lives?

Constantly portraying disabled people, and severely disabled people, as the most ‘pitiful’ examples of people who need such a law is more than false – it is a morally abhorrent when it leads people to kill themselves based on the fear of being disabled.

The pro-euthanasia/assisted suicide lobby wilfully ignore any evidence that does not suit their aim. Anyone involved in survey work will say tell you that the answers you get in polls depends on how you word your questions. The evidence of the Com Res Poll published in the Telegraph July 19 2014 showed categorically that the slight change to more honest language results in a massive drop in those supporting assisted suicide down immediately to 43%. The poll conducted by SCOPE around the same time reflected much more accurately the fears disabled people really do have about such legislation.

Therefore, it remains somewhat beyond belief that a lobby for assisted suicide can claim any view on behalf of all disabled people, never mind a massive majority in favour of their proposed law.

NDY UK on the other hand, like NDY US, is a network of disabled people working largely pro bono who have been mandated to represent the views of many disabled people. And still to-date, the majority of DPOs (UK, US, Australia, New Zealand, as well as others) – are either entirely against or have huge reservations about such a law.

Those involved with Not Dead Yet UK have a long and collective history of representing large numbers of disabled people’s rights through democratic structures and processes, and continue to seek the views of those numbers of disabled people. The world of legitimate disability activism is required to do this: it is called democracy.

But the promoters of euthanasia/assisted suicide have a clear strategy: keep repeating the lie that a majority (disabled people or otherwise) want this law, and the public will begin to believe it is so. But where is the evidence? The real evidence?

There actually isn’t any.

And the evidence we do have goes against their claims, even in their preferred model operating in Oregon and Washington State, where most people say they want to die because they do not want ‘to be a burden on others’ (40% in Oregon, 61% in Washington State).

At the tip of reality, people with dementia are dying in Belgium as are people with mental health issues – people on medication known to bring suicidal ideation or a 24 year old woman with no other health issues, as we saw just recently. Disabled new-born babies in Groningen Holland are being euthanised, and all those in the USA who ‘feel’ themselves to be a burden.

They pro-euthanasia/assisted suicide lobby know full-well that any such law in Britain will mean that innocent people will die, and first among equal candidates are disabled people.

I have repeated over some years now that any law must, by its nature, be general, covering every citizen. Which is also why it makes no sense for the pro-lobby to make a special case for disabled people. The law will be there for not just the fewer than one thousand, but each and every one out of the six hundred thousand who die in the UK every year.

But then where are the voices of the majority who do not wish to commit suicide? Where do they find justice – democracy? And the families of the five thousand, mostly younger men who commit suicide every year? How are their voices heard in this moral scrum for supposed individual choice? Despair is the end of all choice: when someone says, for whatever reason – disability or financial ruin or one of the thousand other things that drive people to despair – ‘I cannot go on’ that is not a choice – that is the end of all choices and sometimes life itself.

Oscar Wilde famously said public opinion was ‘the attempt to organise the ignorance of the community, and to elevate it to the dignity of physical force’; Russell said that ‘One should respect public opinion in so far as is necessary to avoid starvation and to keep out of prison, but anything that goes beyond this is voluntary submission to an unnecessary tyranny’; Churchill thought there was no such thing as public opinion; onlypublished opinion.

Relying on polls for any opinion but especially on such a grave subject is not only dangerous but downright foolish.

[vc_video link=”https://youtu.be/cvtbG6QZBWI”]

Media interviews – remember to ask beforehand:

• Who is calling
• Where they’re calling from
• What they want to talk about and why they’re calling you
• If it’s broadcast, whether the interview is live or pre-recorded
• Whether it is in a studio or elsewhere
• Who will do the interview
• Who else is being interviewed with you (it might be someone from DADID or Dignity in Dying)

Media interviews – Do

• Spend a few minutes thinking through, or talking to someone else about, the main issues. Use the opportunity to read through the NDY briefing materials
• Leave yourself plenty of time to get to the venue, if you need to get somewhere
• Ask what the first question will be
• Have in your head three main points you want to make
• Make your three points simply and positively
• If it’s TV, ‘ook at the interviewer, not the camera or microphone
• Be passionate about what you’re saying

Media interviews – Don’t:

• Be late!
• Fail to return promised calls
• Go off the record, unless you trust the journalist
• Think you’re not being recorded
• Wear checks, stripes, sunglasses or loud colours
• Wear leather coats or noisy jewellery
• Fidget – it looks and sounds bad
• Worry about silences – it’s their job to fill them, not yours
• Answer ‘yes’ or ‘no’ – use the opportunity to steer things

 

Other things to remember…

• ‘I don’t know’ is fine – you don’t have to be an expert on everything
• Be decisive about interruptions – it can look and sound bad
• Avoid waffle
• Good manners tends to win friends more than confrontations, but don’t be afraid to be assertive and clear.

Changing the subject 

An interview is an opportunity to tell the world about what you’re doing and why it is important. Sometimes, however, interviews can end up being frustrating because the interviewer doesn’t cover the areas you want then to. Don’t forget, interviewers may know very little about the subject they’re talking to you about. That gives you the opportunity to steer things the way you want them to go.

 

Here are some ways you can take control of an interview:

• ‘What I think is interesting…’
• ‘I’m not sure, but the most important thing here is…’
• ‘That’s not the point – what we should be looking at is…’
• ‘There has been some discussion about that but…’

OR

• ‘I really don’t agree…’
• ‘Some may have that view – I don’t…’
• ‘That really is nonsense…

Dr. Kevin Fitzpatrick OBE

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?

So who are the DiD ‘activists’?

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[1] 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.[2]

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?

[1]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

[2] Senator Jeff Essman quoted in The Oregon Studies are Invalid Margaret Dorehttp://www.choiceillusion.org/p/the-oregon-studies-are-invalid.html

by Dr. Kevin Fitzpatrick OBE

“Campaigners’ deaths prove we do not need suicide laws” by Dr. Kevin Fitzpatrick OBE

We do not ‘speak ill of the dead’. De mortuis nil nisi bonum dicendum est, a mortuary aphorism that dates from at least the 4th century is, I suspect, rooted in a superstitious fear that the dead may come back to harm us if we say bad things about them; perhaps that we might ourselves be condemned to wander as ‘lost souls’ in revenge for badmouthing those who are gone. We may, at times, wish to honour the memory of someone we couldn’t stand in life, or whose works and their consequences we hated; but if we are to avoid dishonesty, insincerity, we must have the courage to stand by what we said when they were alive. We can still be properly respectful in how we speak.

Of course the rule does not apply universally, but it seems we only allow ourselves to tell hard truths if the dead person was truly bad, a mass murderer. Maybe that comes from recognising that we are all fragile, given to making mistakes, doing some bad things at times.

In any case, it is surely possible to distinguish between the person and their legacy. I met and debated with Debbie Purdy a couple of times and I thought she was wrong – she made what is called a ‘category mistake’ – mixing up the category of one individual saying ‘I want to die now’ with the idea that such a wish must be enshrined in law. Individual wishes are just that – individual. Laws cover every citizen of a state or jurisdiction in which they are passed – which means they are a whole different category. It was her campaigning for this category mistake to be legalised that brought us into opposition.

After hours of grilling by Tony Nicklinson, in an interview he had demanded, I asked him: ‘Say you get your way tomorrow and the law is changed, and the next day, even just one innocent person dies as a result – what would you say?’ He would not respond at that point, and terminated the interview.

But that is the point for me: if, as a campaigner, you cannot guarantee the safety of others, then the death of innocent people under such laws, even that threat, should stop the campaign in its tracks, force campaigners to re-assess what they are doing.

The legacy of such campaigners, three of whom (two in Britain, one in Australia) died ‘peacefully’ in hospice or palliative care settings over Christmas, is surely the biggest, final irony. These three died ‘good deaths’ without any change in law. They have proved there is no need for a change in law in the UK, in Australia, anywhere in the world.

So it is not out of some false respect that I say nothing about Debbie Purdy the person, but out of honesty, recognition that I am not qualified to speak about her personally. I barely knew her. I wish so many others would acknowledge that they too really knew nothing about her as a person. But the time I did spend with her allowed me to understand her motivations – whilst still seeing her mistake. The problem was and is, the damage that mistake brings.

Pro-assisted suicide/euthanasia lobbies around the world claim that ‘the people want this’ change in law. Opinion polls, which everyone knows are too easily manipulated, show one thing: people can be afraid to die. We needed a poll to tell us that? These polls confirm that when asked specific questions, 80% say they would like to die peacefully, at home in their own beds, surrounded by (only) loving family (and not the ones who can’t wait to see the end of the person dying, or get their hands on their money). The biggest surprise for me has always been – only 80%? What on earth do the other 20% want for themselves, for me?

Media headlines, that most people want to die peacefully, are just empty, the most facile statements of the obvious. Such headlines, these polls, give no additional strength to an already terminally weak argument about changing laws, and those who pretend the vox-pop is some kind of marker will run as fast as they can if the same opinion polls show, as they invariably do, that we should bring back the death sentence.

In Belgium, which only gave up its death sentencing in 1996, a convicted serial rapist/murderer was supposed to die by lethal injection later this month (January 11, 2015) under their euthanasia law. Now the doctor has refused to do it. In a perversion of liberal compassion, this man has been refused proper psychological care (after all, compassion has its limits) – but an execution, death by euthanasia – can you see the difference? For him? For us? Public outrage has stayed his sentence: for now. Even Belgium’s Dr Death has counted this as a step too far.

Debbie Purdy has left a legacy: a determined few who cynically use emotion will feed on the unfounded and illegitimate reactions of those who knew her not at all, and by those who opine in the shallowest manner about her ‘courage’, and all the rest. From our shared perspective of living disabled lives, I think it’s safe to hazard that Debbie knew something that a lot of people, and perhaps especially a lot of disabled people already know: living with a disability is not a question of courage – it is a routine, sometimes a tough one, not a lifestyle choice: disability is our fact of life.

Anyone can face the question ‘Yes or no?’ ‘Do I get up – or give up – today?’ A whole philosophical movement called existentialism was born of the feeling: Sartre and Camus – neither of whom died through suicide. Most disabled people admit they do not always have one answer or another, or the same answer every time, but most also get up and get on with their lives as parents, spouses, siblings, friends, work colleagues, customers, etc.

I say ‘most’ because like any section of the population, ‘disabled people’ is not a smooth category – there are as many different kinds of disabled people as there are people. Some of us will not want to lead a disabled life; some, will be ground down by lack of support from the world around them, will become exhausted by unnecessary struggles, the futility they experience crying out against the injustice say, of the destruction of the Independent Living Fund. By all accounts, the rate of suicide is rising in Britain amongst disabled people so badly affected by the cuts in support for them to live independently. Is that a reason for killing those sufferers,

for making it legal for someone else to do so?

I say, categorically: ‘No’.

As Sartre’s intellectual exercise proves, suicide is not such an alien thought to any of us. We do not need to fear it: it is part of the human experience to contemplate ‘disappearing’ when the going gets tough – just ask Lord Lucan. We all want the ground to swallow us up at some point – that’s why the expression is so common in our language – because the feeling is.

The terrible suicide contagion that hit (and I believe still continues to impact) on a South Wales community was never more poignantly highlighted than after one young teenager’s death – she was reported as having a handful of social media ‘friends’, being something of an outcast abused by her peers, a very unhappy child from an impoverished background. Her message was ‘Just wait and see how many friends I will have after this’ – the appalling sadness of any teenager being so fooled. Sure enough, there were many hypocritical ‘friends’ who had been bullying her, who then appeared on her ‘page’ – for a week or two – to declare their undying love for her, after she hanged herself. She wasn’t around to see it happen.

The power of attention pulls others into media campaigns too – it sustains them, gives them purpose in life – for a while. Campaigners seek results, naturally. But if Debbie Purdy’s legacy is a change in the law in Britain, built on the mistake of making hard cases into bad law, I personally will count it as a stain on her life and memory. Others may be upset by that but I think if this does happen, they will have made worse of her as a person in a way that I never could speaking any ill of her.