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Interview with… Debbie Purdy

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Debbie Purdy, who suffers from multiple sclerosis, is the face of Britain’s right-to-die campaign. She doesn’t want to die. She has ‘far too much to live for’. But when the time comes, and the pain is so unbearable that she cannot go on, she wants her husband to be by her side, holding her hand until the end; and she wants to know that he won’t be arrested.

Debbie Purdy’s legal battle then was all about clarifying the law so she knew whether or not the authorities would prosecute her husband Omar if he helped take her to the Dignitas clinic in Switzerland to die. As the majority of comments left on my facebook note were highly pro-assisted suicide, I thought this interview would best serve the public interest if it opened up the story behind Debbie’s legal battle and allowed for a deeper understanding of why her and Omar believe so passionately that assisted suicide should be legalised in the UK

The first aim of the interview was to identify what multiple sclerosis (MS) actually means and its effects on the human body. So my initial question was quite simply, 15 years on from being diagnosed with MS, what is Debbie’s physical state?

Debbie said that really she is just the same as anyone else, everyone has problems, it’s just that 15 years of this MS means she is now in a wheelchair.

Debbie has primary progressive MS – she explained that this means that your central nervous system is like the wiring in your house. If the plastic protection on the wires becomes broken, the flow of electricity to certain areas stops. And that is exactly what is happening with Debbie – the current that flows from her brain to her muscles instructing them what to do is simply getting lost somewhere along the way.

Debbie clearly is a strong-minded person, but I had to ask how she initially reacted when she was diagnosed with MS back in 1995?

Debbie said that when she originally went to the doctor’s she felt she had a brain tumour or ‘something more sexy like that’, but when she was told it was MS her reaction was one of disbelief. As neither her or Omar really knew much about MS before, it has just been a case of learning as time went by.

From reading Debbie’s book, it appeared that in many ways, MS actually made Debbie and Omar are stronger team?

Debbie said that had she not had MS, her and Omar would probably of had just a ‘nice, hot relationship and that would have been it’, but because they were both in a position to help each other, they’ve adapted into one another and indeed become much stronger as a team. As Omar states, it’s all about having mutual respect.

Obviously being in a wheelchair means Debbie quite literally sees life from a different perspective, so I wanted to know what Debbie has learnt about people from her view from 4-feet?

To put her response as simply as possible – she say’s it has been an amazing experience.

As there are different forms of MS, I wanted to know if Debbie’s feels her progressive decline in mobility has made the whole experience easier to deal with?

Debbie said that it always feels that whatever problem you are faced to deal with, it always feel harder than anyone else’s. But to her, she believes she’s had an easier road because she has had time to adapt and think how she is going to deal with things.

This then leads on to the case of Daniel James – a devoted rugby player who was disabled during a game when he was 23. After three failed suicide attempts in the following year, Daniel’s parents accepted his decision and helped him travel to Switzerland to die. Because he was so young, and made his decision in a relatively short space of time, anti-assisted suicide campaigners believe this was an example of people can make rash decisions.

According to Debbie, the case of Daniel James shows that we need a proper framework in place in the UK – one that is tailored to the character of this country. This would include months of counselling and doctors meetings which would allow patients to talk through their feelings and explain why they believe they want to die. Through this you can address the problem individually and on a one-to-one basis.

But if this system were put in place, who would be the final one to say ‘yes, this person is thinking clearly, they want to die, here’s the authorisation, away you go?’

Debbie said that ultimately it’s the individual who decides. To back this up she mentioned the research from Oregon in the US, where 40% of the people prescribed the drugs to kill themselves don’t actually ever use them. Having this power to say when gives people back control over their lives.

Now, as one person commented on facebook, politicians don’t seem to have the ‘balls’ to openly discuss the reality that a change in law would fit in with public opinion

Debbie agreed and said that for politicians to argue that families will start ‘killing off their aunties’ to inherit the house shows a shocking disregard for the public and a huge lack of distrust and respect for the British electorate.

Now one thing I’ve always wondered and a number of people on facebook pointed this out too, did Debbie’s high-profile case make it more likely the authorities would make an example of Omar and sentence him for 14 years imprisonment if he helped Debbie travel to Switzerland?

Debbie said she had made it perfectly clear that she had made this decision on her own. But, from a legal point of view she needed clarity, the law is as colour-blind as it wishes it were. Because the law has now been clarified, she says she now feels confident to live. Omar concludes that although this issue is an uncomfortable one to talk about, people should and must (just like with politics or football) and following Debbie’s efforts more people really are  openly discussing a change in the law.

With Debbie and Omar being such close friends as well as husband and wife, I wanted to know what Omar has learnt from Debbie?

Omar said that Debbie has always had a strong mind and a strong personality – and he admires her for all her work. Debbie is proof that it doesn’t matter if you have a disability, you simply find a way around it and get on with you life.

Obviously there is strong resistance to any changes in the law coming from religious groups.

Debbie said that its bizarre that we talk about empowering people in everything but their lives. She said she’s glad hat Gordon Brown has his Presbyterian principles, but the strength he finds in his faith, Debbie doesn’t find. So technically this is saying Debbie should suffer while someone who has faith has that to see them through.

Debbie states that if her case hadn’t been clarified she would have taken herself to Dignitas 6 months.

And finally… as Debbie and Omar seem so perfect together and having found so much strength in each other, I couldn’t help but ask if they believe in fate bringing them together.

This was a really important for me personally. Not only was it different in the sense that it was quite biographical and I was speaking to two people, but obviously the issue itself is a very emotional one.  How do you think the interview went? Did I serve the pubic interest? What questions did I miss? What issues did I leave unresolved? I want your thoughts and opinions…

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Written by Robert Dale

August 17, 2010 at 7:15 pm

Notes for… Debbie Purdy

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It’s not a choice of life or death, it’s a choice of dignified death or painful death

You have lived now for around 15 years with multiple sclerosis – how are you physically?

How did you manage to engage in such a lengthy legal battle and balance this with the care you need?

Just to clarify here, are you or how close are you to reaching a place where you believe you will travel to Dignitas in Switzerland? Due you believe as Claudia Smith points out tha this a fundamental right of yours to decide?

Let’s go back to 1995, how did you react when you first found out you have this incurable and degenerative illness?

Describe how life has changed? Do you believe that it has changed the person you are or in fact made you stronger?

You write in your book about the ‘Big Four’ – immobility, incontinence, sex and pain.

What I wonder though, you physical abilities have deteriorated gradually – how would you have coped if it had all happened at once? Do you feel you would have already gone to Dignitas?

In those first few months and even years, you must have sometimes got so down that life didn’t seem worth living – had Dignitas been so easily available then do you believe you would have gone?

So Omar, you took on a lot by falling in love with a woman with MS whom you hardly knew. You appear quite a calm and charismatic guy, how have you approached Debbie’s illness? How was it when Debbie told you she was thinking about going to Dignitas?’

If you don’t mind let’s talk about the possibility of taking Debbie to Switzerland, how does this prospect make you feel?

Clearly you two have an incredibly amount of love and friendship – What have you learnt from Debbie during these 15 years?

Do you feel that had the law not been clarified, the authorities may have made more of an example of you. Do you think that because you a black man from a foreign country (as Debbie puts it) that this would have mattered?

You say you are yet to hear an argument against assisted suicide that can’t be addressed, but as Richard Jones points out on facebook

I’m in favour of assisted suicide in principle, in the sort of cases people have already described. I just don’t know how you would go about introducing a system by which it could operate. Clearly having people going to Switzerland isn’t satisfactory, but I’m not clear about the mechanics of how assisted suicide would work here.

Who decides when someone is a suitable case? What criteria do they use to come to that decision? Who administers the fatal dose of drugs? Where does the assisted suicide take place? I’d like to hear some suggestions on that.

– So what about the ‘slippery slop’ argument? To ways – people either go to early or are pushed into it my family members.

What about faith arguments?

You have debated this issue with all three party leaders, now public opinion approved massively on by my facebook note, is greatly in support of the right to die with dignity – why do you believe the politicians unwilling to reform the laws on suicide? Is it, as Claudia Smith wrote, that they simply don’t have the ‘balls?’ Racheal Seabrook This issue urgently needs calm, rational, public debate. Is it getting it?

Now I want to end with talking about what this whole experience has taught you both about society in general. Debbie regarding your wheelchair you say ‘life in a chair is undoubtedly fraught with obstacles, ignorance and patronising attitudes, but like many difficult journeys the view is breathtaking. Negotiating the difficulties can be heartbreaking and draining, but then you get a glimpse of the human spirit and you feel privileged to be a witness.

What has this experience taught you?

I’d like to end on what I think is the most inspiring sentence in your book ‘it’s important always to consider what you can do, rather than mourn what you can’t.

Written by Robert Dale

August 16, 2010 at 11:51 am

Thousands are living destitute in Leeds

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Destitution (n) 1. extreme want of resources or the means of subsistence, complete poverty
2. a deprivation or lack, a deficiency

There is a hidden, largely unreported population in British society which survives on less than a dollar a day – the yardstick that defines acute and unacceptable poverty across the globe. These people are rejected asylum seekers who have ‘chosen’ to live in destitution because they fear that their lives will be in danger if they return to their home countries.

The section of the Home Office responsible for asylum seekers, the UK Border Agency (UKBA) does not put an exact figure on this population but estimates range from 300,000 to 500,000. These ‘failed’ applicants are given 21 days, known as the ‘move-on’ period before financial, legal and health aid is severed. Without a home, thousands of people have taken to living under the radar in Britain, enduring severe poverty, extreme hunger, mental and physical ill health and multiple forms of abuse. Amnesty International believe this to be a deliberate tactic to rush people out of the country. Even the House of Lords deemed that by ‘refusing permission for asylum seekers to work and operating a system of support which results in widespread destitution, the Governments treatment of asylum seekers in a number of cases reaches Article 3 ECHP threshold of inhuman and degrading treatment’.

A recent report published by PAFRAS, a charity that works with asylum seekers and refuges in Leeds revealed over half of the people it works with survive on one meal a day and less than £5 a week. Severe depression is widespread and many have experienced racial and physical abuse (including rape) by ‘white English people.’ Crucially, 95% of the people PAFRAS speak to are from affluent professional backgrounds including lawyers, teachers and television presenters. So the question must be asked, why would they choose to remain here and suffer such neglect and privation?

According to the Refugee Council, half of all recorded destitution cases come from only four countries, Iraq, Iran, Zimbabwe and Eritrea – all places of conflict or that have human rights records. Many were forced to flee these countries because they dared speak out against oppressive regimes in countries where opposing the government leads to detention, torture and sometimes death. Yet despite the government arguing it has ‘a proud tradition of offering a place of safety for genuine refugees’, many people from these troubled countries continually find their application rejected. But in the case facing many Zimbabweans, legal action currently prevents the government from removing refused asylum seekers back to the country and therefore many have little choice but to slip off the radar.

In contrast to popular opinion, the UK does not receive the most asylum seeker applications in Europe; last year both France and Italy took higher numbers. There are 10.6 million refugees in the world and 90% live in Africa and Asia. In 2006, only 23,610 people claimed asylum and up to two-thirds of these were refused – asylum was just 4% of overall immigration in 2007. Those who do it make to the UK have done so through people smugglers, often paying $10,000 to get passage to a safe country. Their socio-economic status then in their home country debunks the myth that asylum seekers are poverty-stricken individuals whose primary aim when in the UK is to claim benefit and secure council housing.

The destitute asylum seeker population is invisible, it statistically does not exist. But the human stories are there to be discovered. PAFRAS has seen demand for its services (free meals, toiletries, clothes, support and advice) rise from 2,230 visits in 2006 to 6,112 in 2008. Much of the help received by asylum seekers is provided by other impoverished asylum seekers but who are on Section 4 Support – £35 supermarket vouchers a week and no choice accommodation). As one put it, ”It’s left to those of us with almost nothing to support those with absolutely nothing.” This leaves many homeless, starving and open to exploitation and racist attacks.

Thirty-five percent of the women in the PAFRAS report who have no choice put to sleep on the street claim they had been sexually assaulted. One woman was attacked by a gang of five men while she was sleeping in a park – two of these men raping her. Another man was racially abused and stabbed in the eye with a piece of broken glass. But, the vast majority of attacks go unreported as failed asylum seekers are fearful of the police liaising with immigration officials to expedite their removal from the UK.

Many destitute asylum seekers are in poor health, both physically and mentally. Seventy-five percent of those who use PAFRAS have been diagnosed with clinical depression. Peoples psychological problems are a toxic combination of trauma endured in their home country and trauma endured here. But it is not just the adult asylum seeker population crippled by destitution. Five percent of the women interviewed in Leeds have children under the age of 5 born in the UK. Like their mothers, these children are enduring severe poverty and extreme hunger. What will happen when they reach school age?

Jon Burnett of PAFRAS perhaps offers the best possible summary when he states ‘the fact that so many people who have escaped persecution are suffering such extreme privations is nothing short of a completely avoidable humanitarian disaster in our own backyard’.

Written by Robert Dale

August 15, 2010 at 2:21 pm

Interview with Nicholas Jones (former lobby journalist) on the undemocratic future of political commentary

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Here in Britain newspapers have always been free to campaign and promote political propaganda. The intrusive and influential nature of radio and television however has meant they’ve been placed under strict rules and regulations that require their reporting (by law) to be politically balanced and impartial.

And it’s because of these rules that politicians delve persistently into the ‘black arts’ of political communication in order to set, shape and control the media agenda. Politicians no longer announce news policies in the House of Commons; they launch them at stage-managed pseudo-events that are more abut style than substance. Favoured journalists are selectively briefed with leaks and ‘exclusive’ information and unified party-line rebuttals are remembered to defend any negative reporting that arises along the way.

Nothing in this ‘public relations democracy’ is left to chance; everything is rational, rehearsed and rhetorical.

The online political environment is sometimes romanticised as the antidote to all of this. There is no doubt that it does occasionally serve to correct many journalistic and political errors and indeed we are gradually seeing signs that what appears on the internet can affect the mainstream news agenda.

However, there is a growing murky side to all this unregulated political commentary. According to Nicholas Jones, former BBC journalist and now author of several books on ‘spin-doctory’ and media manipulation, the national newspapers remain the all-powerful force in setting and commanding the online agenda – they may not control content but they certainly influence the root of most online discussion.

This on first glance may not appear to be too worrying. But, as Jones points out, there is a natural evolution of newspapers transforming themselves into digital online radio and television broadcasters (the politically-charged Sun Talk launched last April with who else but David Cameron appearing as their first live interviewee). Free of the legal regulations placed over traditional radio broadcasters, Sun radio is free to broadcast whatever serves Murdoch’s political agenda best – it’s no surprise then that the Tories plan for the ‘Digital Britain’ provides little resistance to these new, unregulated mediums.

It appears that Britain is soon going to have a new media network that parallels that of the American ‘shock jocks’. If Jones is correct, this could indeed be one of the biggest challenges to our democracy.

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Written by Robert Dale

August 13, 2010 at 12:01 pm

HELP ME INVESTIGATE: How many destitute asylum seekers are there in the UK? Should destitution be a part of the asylum seeking process at all?

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www.helpmeinvestigate.com

I’m currently taking part in this investigation as I have deep concerns over the political tactics that currently enforce destitute upon thousands of people. Over the past year I have made several enquiries to the Home Office about this issue and each time they told me that the people I am speaking about do not as exist. As far as public-facing politics is concerned then there is no problem at all, however beneath the rhetoric there is quite clearly a huge population living in abject poverty in our backyard.

HMI: A place where you can collaborate with other people to investigate things

HELP ME INVESTIGATE: How many destitute asylum seekers are there in the UK? Should destitution be a part of asylum seeking process at all?
The Home Office refuse to put a figure on the number of destitute asylum seekers living ‘underground lives’ in Britain. Estimations from Amnesty and the Refugee Council put the number somewhere between 200,000 – 500,000.
In 2007 the House of Lords deemed that by ‘refusing permission for asylum seekers to work and operating a system of support which results in widespread destitution, the Governments treatment of asylum seekers in a number of cases reaches Article 3 ECHP threshold of inhuman and degrading treatment’.
According to the Refugee Council, half of all recorded destitution cases come from only four countries, Iraq, Iran, Zimbabwe and Eritrea – all places of conflict or that have human rights records. Many destitute asylum seekers are in poor health, both physically and mentally. Seventy-five percent of those who use the PAFRAS centre in Leeds have been diagnosed with clinical depression.
Around 95% of destitute asylum seekers are from affluent professional backgrounds including lawyers, teachers and television presenters. So the question must be asked, has Britain created a humanitarian disaster in our own backyard with its policies on asylum seekers.
DEFINITELY WORTH A WATCHDocumentary maker Nick Broomfield has made a short film for Amnesty International to highlight the issue of destitute refused asylum seekers in the UK.

Key findings from research done in Leeds during 2008/9 are;

– the overwhelming majority of the interviewees came from wealthy and/ or professional backgrounds in their home countries;
– their fears of return appear well-founded, as over two-thirds of those interviewed had experienced torture in their home countries, and over half had been imprisoned;
– the average period of time living destitute among those interviewed was two years and five months; one interviewee has lived destitute for seven years;
– almost three-quarters are sleeping outside or have done so. Over a third of these have been physically attacked by English people and over a third of women sleeping out have been sexually attacked, including rape. All are terrified of the police;
– most of them are surviving on less than £5 per week.
‘Underground Lives’ points out that the government’s emphasis on tough enforcement, trumpeted in press releases such as that put out in November 2008, ‘Third quarter removals at a six year high’, which boasted that ‘last year someone was removed every eight minutes’, involves starving refused asylum seekers into accepting voluntary removal, because forced removals are so expensive and can attract bad publicity when force is used. Three weeks after appeals are rejected, asylum support is cut off for those without children.
They are prohibited from working, access to health care is restricted, and they are obliged to leave asylum accommodation. Only by agreeing to return voluntarily, or by showing that it is impossible for them to return to their country of origin, can they access basic, cashless sub-subsistence level support. Refused asylum seekers don’t appear in homelessness statistics since they are ineligible for homeless persons’ accommodation; they are invisible. At least 26,000 live off Red Cross food parcels.
At the same time, asylum claims are at a 14-year low, less than a quarter of the over 100,000 claims made in the ‘peak’ year of 2002, and they represented only four per cent of total immigration applications made in 2007.

Written by Robert Dale

June 30, 2010 at 11:16 am

Notes for article on Wikileaks and transparency in government

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Most source material can be found at delicious.com/robdaleworks. This article is being produced for http://www.dontpaniconline.com/.

Here’s the brief I have been given by my Editor – Something to discuss could be Wikileaks – with the outing of the founder and the recent bill passed in Iceland, there’s mileage to be got out of it. Part discussion of what it achieved through leaking material, part forecast of the future of information freedom given these two related events.

There are 4 elements that need to be discussed here I feel. The first is the currently secretive political climate that exists – this can be highlighted from drawing on Heather Brooke’s five year battle that eventually clawed out the information needed for the ‘Expense’s Scandal’ to ever exist. http://www.guardian.co.uk/politics/2009/may/15/mps-expenses-heather-brooke-foi. Insight from her wonferful book ‘Then Silent State’ also needs to be brought out.

This data would have never come out though had it not been for a whistleblower. A discussion about the value of these people , who they are and what they have given society over the years will set a nice context for an overview of Wikileaks. http://www.worldwidewhistleblowers.com/index.php?option=com_content&view=section&layout=blog&id=6&Itemid=58

Wikileaks is currently in the news quite a bit with a recent U.S. intelligence officer handing over a reported 260,000 cables to the site. This included video footage of a U.S. air strike that reportedly killed 100 civilians.The officer, Bradley Manning, is also believed to have handed over this astonishingly disturbing video of  a US Army attack in Iraq in 2007 that left 12 people dead (including two employees of Reuters). http://www.guardian.co.uk/world/2010/apr/05/wikileaks-us-army-iraq-attack – I strongly recommend you watching this video.

Manning has since been removed from Afghanistan and is currently being held at a military base in Kuwait, whilst Julian Assange, the creator of Wikileaks, is keeping a low profile in a hideout in Belgium. http://www.thedailybeast.com/blogs-and-stories/2010-06-21/wikileaks-founder-julian-assange-speaks-his-outreach-to-the-pentagon/?cid=hp:mainpromo8

Assange has been in Iceland over recent months assisting politicians there with the planning of a bill that would see the country become a ‘freedom of expression haven.’ It’ll become like what Belize or the Bahamas are to billionaires basically. http://www.countercurrents.org/assange170610.htm

So a round-up of these plans and what they say about the future of transparent government will hopefully be a nice ending to the piece.

If you have any ideas, thoughts or tit-bits of information, or if you would like to mull over any of the issues then please get in touch. Email me at robdaleworks@gmail or call me on 07854 138517.

Written by Robert Dale

June 27, 2010 at 9:35 am

if those were Nick Clegg’s ‘skeletons in the closet’ then really he’s pretty clean

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The British have a ‘more insidious cross to bear’ because of their sense of moral superiority, than the Germans do in respect of Nazi guilt. This according to what was actually a rather interesting and provocative article Mr. Clegg wrote while an MEP back in 2002.

To be blunt though, who cares what any MEP had to say eight years ago?

It’s pretty obvious that the longer this general election campaign went on, the more Nick Clegg would come under scrutiny from the media. But if this is the worst skeleton the Lib Dem leader has in his closet then really he appears not too dirty at all. Still though, the transformation from Winston Churchill to a Nazi was the narrative told in the tabloids last week.

But what about the details of Mr. Clegg’s rather privileged background that emerged last week too? It turns out that Clegg is just as posh as Cameron – the son of a success banker, Nick went to a rather nice private school, holidayed in French châteaus and has Russian aristocracy in the family tree.

But whilst a comfortable upbringing has been somewhat of a plague upon David Cameron, the electorate haven’t yet expressed such venom towards Mr. Clegg’s roots. As the polls continue to show the British public continue to connect very well with the Lib Dem leader.

The question therefore appears not to be where did you come from? but how much to you care for people who weren’t as privileged as yourself?And it’s this sense of sincerity for the poor and vulnerable which really hasn’t come through for the Tories for a good few years now.

As proved by their corporate-sponsored attack on Labour’s planned increase in national insurance, the Tories are the voice of big business and they operate through a City of London perspective.

The Conservatives have and are trying to offer help to employees and the unemployed, but their message seems forced and is far from convincing the general public. So it is for this clear and simple reason why many of the ‘votes for change’ are now heading in Mr. Clegg’s direction.

Written by Robert Dale

April 26, 2010 at 9:10 am