Posts Tagged ‘assisted suicide’
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…
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.