“No amount of safeguarding will ever be enough”

JulietIn this guest blog post, Juliet Marlow, a disability rights campaigner and member of Not Dead Yet UK, explains why she is against legalising assisted suicide. Not Dead Yet UK is today protesting against the Assisted Dying Bill outside the House of Parliament.

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.

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.

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.

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. 

2 thoughts on “ “No amount of safeguarding will ever be enough””

  1. Dear Juliet,

    We read your article with interest, but we have had some trouble with a few of the arguments you used here.

    From the outset of the piece you fairly and accurately explained that only those with terminal illnesses would be eligible for assisted dying under the new bill. Then, in the fourth paragraph you go on to say: “People know that sick and disabled people have had to fight for control of our own lives, so naturally the assume we want to control our deaths too”.

    This is the first of many times in the article where you talk as though the bill would entitle you, or any other (non terminally ill) disabled person to be assisted to die. As you’ve already explained it wouldn’t. Because you are clearly an articulate and intelligent writer, we can only assume you are doing this deliberately.

    This means that for the rest of the article, when you talk about those that would be “affected” by the bill, your readers will imagine a contented vivacious disabled persona such as yourself, rather than a terminally octogenarian, living in constant pain, who would just wants to end her life on her own terms. Of course then your readers will have hostility towards any bill that implies your conditions is insufferable. This bill is not about you.

    You are subtly shifting the argument from the narrow group the bill is designed to assist (terminally ill patients with months to live) to the absurdly broad (anyone with a disability, and by implication yourself). Its then far easier to spend the rest of the article making facile arguments about how a law that entitled all disabled people to end their lives would be a bad idea. That is not what the law proposes and we think you have been intellectual dishonest in blurring the two groups.

    On a more personal note, we were really distressed by phrases such “imagined loss of dignity” in reference to end of life care. Since this debate is about end of life care, by definition neither you nor we can know what loss of dignity is actually suffered by people in those circumstances. Feelings about dignity are personal, subjective and will differ from person to person. What might be acceptable for you or us might not be acceptable for someone from a different cultural background, for example. You referenced Tony Nicholson and Debbie Purdy who both clearly expressed their genuine feelings about loss of dignity, past, present and future. What really troubles us when you talk about “imagined loss of dignity” is the presumption that you already know what it must have been like for them. The reader has to assume you think they were either wrong or lying.

    There is a real need to a have a public debate on the issues raised by this bill. Because it’s such an emotive topic its just too easy to miscast the other side’s point of view and then play to the gallery. We would really appreciate to have an honest debate about the real issues raised by this bill, without the slight of hand and grandstanding.

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