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| Juliet Marlow |
"I want support to live, not to die!"By Juliet Marlow
Lord Falconer’s Private Member’s Bill proposing the legalisation of doctor-assisted suicide (AS) for those with six months or less to live will receive its third reading in the House of Lords today, Friday 16 January.
This isn’t the first time the matter has been debated. Every few years somebody will make the proposal only for it to be nervously put aside. But this time feels different. Despite its controversial nature it seems the idea has somehow caught public imagination and there is a very real chance that this time it could become law.
My name is Juliet. I’m 44, married, a PhD student and freelance writer. I sing in a rock/pop band and mostly love my life. I have been disabled since I was four; I use a wheelchair and rely on PAs to assist me with pretty much everything. I am also passionately opposed to the legalisation of AS.
On the surface, AS doesn’t look that unreasonable. People know that sick and disabled people have had to fight hard for control of our own lives so naturally they assume we want to control our deaths too.
This isn’t the first time the matter has been debated. Every few years somebody will make the proposal only for it to be nervously put aside. But this time feels different. Despite its controversial nature it seems the idea has somehow caught public imagination and there is a very real chance that this time it could become law.
My name is Juliet. I’m 44, married, a PhD student and freelance writer. I sing in a rock/pop band and mostly love my life. I have been disabled since I was four; I use a wheelchair and rely on PAs to assist me with pretty much everything. I am also passionately opposed to the legalisation of AS.
On the surface, AS doesn’t look that unreasonable. People know that sick and disabled people have had to fight hard for control of our own lives so naturally they assume we want to control our deaths too.
Not Dead Yet
I am proud to belong to the anti-AS campaign group Not Dead Yet UK. Most of us have personal experience of disability and our reasons for opposing the Bill will vary. But our core arguments are that it is unnecessary and unsafe. No amount of safeguarding will ever be enough to protect all vulnerable people, all the time. And that is a terrifying thought for those of us who face illness and death every day.
Sympathy and fear are the pro-AS lobby’s weapons of choice. Sympathy is hard to fight because some of their campaigners genuinely want to try and prevent future suffering. Nevertheless, I respectfully suggest they have missed the point – it is society that robs people of a ‘good death’, not illness. With proper pain medication and decent patient-centred palliative care, a ‘good death’ can be had. It’s never easy but it can be effectively managed to prevent unnecessary suffering.
Fear is much harder to counteract. People will die in pain and distress unless the authorities ensure all terminally ill people get the palliative support they need. It is no coincidence that at a time of savage public funding cuts, the AS question has raised its ugly head again. It is because the misguided belief that society will always take care of its most vulnerable citizens has been tarnished, exposed as a lie.
I am proud to belong to the anti-AS campaign group Not Dead Yet UK. Most of us have personal experience of disability and our reasons for opposing the Bill will vary. But our core arguments are that it is unnecessary and unsafe. No amount of safeguarding will ever be enough to protect all vulnerable people, all the time. And that is a terrifying thought for those of us who face illness and death every day.
Sympathy and fear are the pro-AS lobby’s weapons of choice. Sympathy is hard to fight because some of their campaigners genuinely want to try and prevent future suffering. Nevertheless, I respectfully suggest they have missed the point – it is society that robs people of a ‘good death’, not illness. With proper pain medication and decent patient-centred palliative care, a ‘good death’ can be had. It’s never easy but it can be effectively managed to prevent unnecessary suffering.
Fear is much harder to counteract. People will die in pain and distress unless the authorities ensure all terminally ill people get the palliative support they need. It is no coincidence that at a time of savage public funding cuts, the AS question has raised its ugly head again. It is because the misguided belief that society will always take care of its most vulnerable citizens has been tarnished, exposed as a lie.
Life not death
Our solution is not to control when and how we die, but to focus on life rather than death. We choose to campaign, protest and fight until the authorities introduce a cast-iron, needs-led end-of-life service that allows each of us to live to our natural end without pain and imagined ‘loss of dignity’.
The suggestion that dignity is lost through illness and can only be reclaimed by controlling the manner of your death is not only ignorant, but insulting to disabled people who have fought to build a meaningful life. If there is any loss of dignity then it is inflicted; it is not a natural state that can be avoided by dying early. I want support to live, not to die!
The pro-AS campaign claims that the Bill has nothing to do with disability. They are at best being naïve, at worst underhand. It has everything to do with disability. After all, it is only when terminal illness threatens to become disabling that AS is even considered. The high profile cases of the late Debbie Purdy and Tony Nicklinson demonstrate how much disability informs the whole issue. Ironically neither of those people would have qualified for AS under the current wording of the Bill, which gives credibility to our belief that once in place the legislation will be modified to include more people – what we call the ‘slippery slope’ effect. Once a line has been crossed any incremental changes to the qualifying criteria can and will be passed with little resistance.
Our solution is not to control when and how we die, but to focus on life rather than death. We choose to campaign, protest and fight until the authorities introduce a cast-iron, needs-led end-of-life service that allows each of us to live to our natural end without pain and imagined ‘loss of dignity’.
The suggestion that dignity is lost through illness and can only be reclaimed by controlling the manner of your death is not only ignorant, but insulting to disabled people who have fought to build a meaningful life. If there is any loss of dignity then it is inflicted; it is not a natural state that can be avoided by dying early. I want support to live, not to die!
The pro-AS campaign claims that the Bill has nothing to do with disability. They are at best being naïve, at worst underhand. It has everything to do with disability. After all, it is only when terminal illness threatens to become disabling that AS is even considered. The high profile cases of the late Debbie Purdy and Tony Nicklinson demonstrate how much disability informs the whole issue. Ironically neither of those people would have qualified for AS under the current wording of the Bill, which gives credibility to our belief that once in place the legislation will be modified to include more people – what we call the ‘slippery slope’ effect. Once a line has been crossed any incremental changes to the qualifying criteria can and will be passed with little resistance.
Becoming a burden
Another concern is that coercion is not always obvious. It is subtle, creeping and sometimes even unintentional. The fear of becoming a burden to our loved ones is real, especially now as an almost imperceptible but tangible shift in attitudes towards disabled people has emerged. This is fuelled by the ‘shirker vs. striver’ rhetoric favoured by all mainstream political parties. I have witnessed genuine cases where people are made to feel unloved and unwanted by those around them; they are made acutely aware of being a so-called burden on their loved ones. Once AS becomes acceptable it will then become expected, the ‘decent thing to do’ to alleviate stress to others.
Ultimately everyone must make up their own mind whether they can support AS. But for me, if even one person loses their life through error or coercion then that’s too high a price to pay to allow a handful of people to end it all if and when society lets them down. Dignity in dying, surely dignity in living is more important? After all, if ill and disabled people have the latter, few will ever need the former.
You can also read Scope’s view on the Assisted Dying Bill, and we would welcome your thoughts too.
Another concern is that coercion is not always obvious. It is subtle, creeping and sometimes even unintentional. The fear of becoming a burden to our loved ones is real, especially now as an almost imperceptible but tangible shift in attitudes towards disabled people has emerged. This is fuelled by the ‘shirker vs. striver’ rhetoric favoured by all mainstream political parties. I have witnessed genuine cases where people are made to feel unloved and unwanted by those around them; they are made acutely aware of being a so-called burden on their loved ones. Once AS becomes acceptable it will then become expected, the ‘decent thing to do’ to alleviate stress to others.
Ultimately everyone must make up their own mind whether they can support AS. But for me, if even one person loses their life through error or coercion then that’s too high a price to pay to allow a handful of people to end it all if and when society lets them down. Dignity in dying, surely dignity in living is more important? After all, if ill and disabled people have the latter, few will ever need the former.
You can also read Scope’s view on the Assisted Dying Bill, and we would welcome your thoughts too.
If the only acceptable alternative is one which is perfectly safe we better do away with all modes of transportation and, let's see, everything else. Is the imagined slippery slope the best you can do?
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