Assistance to live

// 2 March 2010

The Director of Public Prosecutions issued new guidelines on Friday for the prosecution of people who assist others to commit suicide. The guidelines do not change the law on assisted suicide (euthanasia), but could enable individuals to walk free from court avoid prosecution if their decision to kill someone was motivated wholly by “compassion” and that person was clearly determined to die.

In the past, I – like many others – would have seen this as a positive step. It just seemed fair that people should be able to get help ending their lives if they were experiencing severe suffering and that suffering was not going to be alleviated any other way. Why should the person who helped them carry out their wish face punishment?

However, reading blogs by disability rights activists who are opposed to assisted suicide laws has made me see that it’s not that simple. Campaigners such as Clair Lewis argue that disabled people need assistance to live, not to die, and that the guidelines bring us a step closer to the latter:

Despite the slow march towards equal rights for disabled people and those with long-term illnesses, the Government would prefer to ration healthcare, and social services are underfunded to the point that they now refuse support to anyone not in serious crisis. Meanwhile, the media is misleading the public that disabled people’s lives are terrible. They rarely consider the reasons, other than our impairments, why we might be having such a bad time. Social isolation, abuse, lack of equipment, being dumped in institutions, lack of opportunity, poor healthcare, insufficient support and inaccessible housing contribute to making people feel their lives are not worth living.

I believe the root of public opinion is fear of suffering, and I agree that nobody wants to suffer. So why are we not looking for solutions that do not involve people having to die? The concept of liberating people from suffering by offering them fatal medication is more like an idea for a horror movie than a social policy.

During my internship for disabled children’s charity Newlife, I was appalled to discover just how much suffering is caused by statutory services’ failure to provide disabled people and their carers with the equipment and support that could drastically improve their independence and quality of life. Children are unable to attend doctors’ appointments, go to school and get involved in leisure activities because the NHS refuses to provide the specialised car seats many of them need to travel safely. Others have suffered injury and seen their conditions worsen to the point of needing surgery because social services and NHS trusts spend so long arguing over who should fund specialised beds needed to enable children to sleep securely. Parents have actually been forced to consider putting their children into care homes because statutory services will not give them the equipment they need to care for them at home. Every time, it comes down to lack of funding.

When this miserable culture of neglect is combined with widespread societal ableism, is it any wonder that a disabled person might feel suicidal, or that they are too much of a burden on their families? Is it any wonder that recently disabled people might feel so afraid of what the future holds that they would choose death rather than life? Any step towards legalising assisted suicide as things currently stand now seems to me more like a deadly concession to this culture of ableism and neglect than a sensible act of compassion, an admission that the government and society as a whole would rather let disabled people die than tackle ableism and stump up the cash to enable them to live with dignity.

As Clair argues, when healthy people are suicidal, “the usual response is to try to help them live better lives, not provide a solution which encourages them to die”. Why should disabled people be treated differently? Should they not be allowed the chance to change their minds, a chance often given to non-disabled people who are supported out of suicide? The Independent reports that:

In one [recent] case a permanently disabled woman pleaded for help to end her life before a change in her circumstances – the development of a new friendship – altered her view and convinced her of the value of remaining alive.

With a state-sanctioned assisted suicide law in place, she may not have survived, particularly given the widespread attitude that disabled people’s lives are worth less – and therefore less worth fighting for – than those of non-disabled people.

There may be cases where individuals would want to die regardless of the quality of care and support they received, and I think the right to die when one has, say, only a few weeks to live is perhaps a different issue . But can we really fight for the freedom of a few to commit suicide if it leaves thousands of others at the mercy of a culture that prioritises assistance to die over assistance to live?

Comments From You

gadgetgal // Posted 2 March 2010 at 1:37 pm

Maybe I’m just feeling low because in the last two months I’ve lost two friends, both in the US, both who had the ability to make living wills (not that they’re always carried out, but most states have to take them into consideration at least). You ask (sorry for phrasing this so Mr Spock) whether the needs of the many outweigh the needs of the few – I’d answer that with the statement most of the time, depending upon what and how much you’re asking those few to suffer in order to protect the needs of the majority. This is why this area is such a grey one, because of our need to help those who are suffering who genuinely do want to end it, and those who want to end it for a whole variety of other reasons that we should be helping to have a better life, not to end it.

On the issue of disability I would say absolutely not enough care or help is given where needed, and that could, possibly, lead someone to want to end their own life when they wouldn’t otherwise. And yes, I would think that this particular piece of legislation might make it more possible for others to encourage people to die instead of to live, and that’s a bad thing. But that’s not the only reason why I think this is a bad piece of legislation.

The other reason I think this is a bad piece of legislation is because it is giving guidelines mainly for those who assist in suicide, not those who commit suicide themselves. Again, maybe I’m biased here today because of my friends, but one just had his life-support machine switched off under direct orders from his living will, that he made himself – no one else had a right to say whether he could do this or not, nor could his loved ones be prosecuted for doing so under his orders. So his living will covered that anyway, his loved ones don’t have to suffer any more than they already are, and he is the only one held responsible for his death.

I also saw the bad side of not having a living will when my grandfather died, when too much power was given to others and too little emphasis placed on someone putting in writing what their wishes were beforehand. My grandfather was a stubborn, hard-nosed man, who wasn’t the nicest person in the world, but he clung onto life all throughout his – you’d literally have to prise it from his cold-dead fingers before he’d have given up on the slightest chance that he might survive, or make a miraculous recovery. But, as in most cases, when he was unable to let his wishes be known it was left to the next of kin to decide and (because they feel very differently about how THEY would like to go) they made the decision to let him die. Assisted death already happens all the time – the problem with it HAS ALWAYS been that not enough consideration is given to the person’s wishes regarding how they would like to go, or whether they would like to go, and also that not enough weight in law is given to back this up and protect those close to them.

I just feel if a person has a living will that is taken seriously a lot of the tragic cases that have hit the headlines recently wouldn’t have happened. And although I agree with Claire Lewis when she says “So why are we not looking for solutions that do not involve people having to die?”, I don’t see why you can’t try to have both. It shouldn’t have to be either/or.

Kristin // Posted 2 March 2010 at 2:56 pm

Laura, what a great post. Yes, I too think the lives of people with disabilities can often be made vastly happier by giving basic, practical, everyday help and support. Why do things have to reach crisis point! And to play devil’s advocate, if lack of funding is an issue (when isn’t it!), surely it costs less to provide basic, ongoing help and support which also lets people maintain their independence and feel better, rather than lurch from one crisis to another? Apart from the sheer inhumanity of allowing that to happen. Quality of life is just not given enough consideration.

Of course people should be able to end their lives if they feel their suffering is unbearable, even if they’ve had great quality of care. But I think a lot of people don’t get great care. And I am really afraid that the ‘compassion defence’ will become a get-out clause for abuse and murder. People with disabilities are already vulnerable enough, and when you have a law like this it’s bound to be abused, just because it can be. And of course there’s also the possibility that people will feel pressured into suicide because they think they’re worth less and are a burden in an ableist society.

I feel it is wrongheaded to focus on helping some people to die when so many more could benefit from focus on how their lives could be improved, often by simple basic things. I’m all for living wills, I wouldn’t want myself or a loved one to go on suffering when everything had been tried and there was no hope. But gut feeling for me is, the idea of state-sanctioned suicide sends a chill through me. Because people with disabilities, older people, people who are more vulnerable in all sorts of ways, are already not getting all the help they need, and often are considered less worthy, less deserving of resources. Something like this will be just too tempting for some so-called carers who are capable of abuse and neglect, and worse. We’ve all heard the horror stories.

Ally // Posted 2 March 2010 at 3:18 pm

I don’t think it is acceptable, ever, to take away the fundamental rights of a few to make their own choice about whether they want to live or die, no matter how beneficial taking that choice away could be, or now many people would benefit. People have a right to self-ownership. They have a right to choose to die (whether they are healthy or not), it is their body, their life and their choice. The only reason discussion of disabled people is different than that of able-bodied people, is that able-bodied people are able to take their own life, so there is no question of anyone needing to be prosecuted. We should be trying to give disabled people as far as is humanly possible the same freedom of choice they would have if they were able-bodied both to live and to die.

Louise // Posted 2 March 2010 at 3:29 pm

People should have the right to voluntarily end their lives at any point they choose. To force a person to go on living when it is not their desire to do so is an inhumane violation of their human rights, just like forced pregnancy, forced marriage, and any other forced endurance of an unwanted state of being. This choice is an issue of personal freedom and human rights, and should not be confused with the many complex reasons that lead people to such a decision.

Ending one’s life can be a desperate act born of depression or other mental health issues. Deciding to die can also be a lucid and logical choice. It is not for me, or you, or the media, or the courts, to decide whether an individual’s decision to die is “correct” in some way.

Why should a person who is not physically capable of ending his or her own life, and requires assistance to do so, have fewer rights than an able-bodied person? Denying a person this assistance in the naive belief that “things might get better and you might change your mind” is infantilising his or her choice. It is denying that person’s human rights.

Clair Lewis’s article – with its talk of suicide and victims – is inflammatory and unhelpful in its conflation of two separate issues. Disabled people need better assistance to live? Absolutely. Disabled people should have the same rights as everyone else in choosing when to die?

Absolutely.

Joana Andrade // Posted 2 March 2010 at 4:45 pm

Great Post! I have 2 young children and have to use a double buggy to travel with them, commuting is so difficult and takes so long that I ended up working from home instead of going to work everiday. I often feel depressed and feel that I miss much of what makes my job interesting and rewarding. The simple lack of a pair of lifts and escalators ended up having a great impact in my life. This made me very aware of how difficult the life of a disabled person is, and very angry because ending this state of affairs is such a low priority in our society. We are wasting the talent, drive and the invaluable experience of thousands of people just to save money.

Elmo // Posted 2 March 2010 at 5:01 pm

oh, thank you laura for highlighting this! I have seen so many people with disabilities over the years who do NOT want to die-it must be very hard living in a world where the media is constantly hurling headlines about disabled suicide at you, and I think its a very damaging message.

Obviously there are those who feel ending their life is the right choice, but for those who DONT, it must be very tough to be constantly confronted with images and stories about disabled people killing themselves. I feel it promtes an idea -if you are disabled, you are worthless to society, so dont bother. By no means am I saying i dont think people should be allowed to take their own lives-its their choice. But I think the media have a way of twisting this. What we need to do is (as you say) provide more care and support.

The emphasis should be on choice, but I feel “life” is a choice currently being ignored by the press and the courts.

Im not condemming suicide, just the media’s take on it!

Butterflywings // Posted 2 March 2010 at 5:52 pm

I don’t think there is an either/ or here. Of course, disabled people should get the care, assistance and equipment they need. But they should also have the right to end their lives. As Ally says, it’s a basic human right to choose, both to live and to die.

I think it is easy to conflate the two issues. I accept the social model of disability *up to a point* but if someone is for example, totally paralysed and able to move one eyelid (locked in)what ‘leisure activities’ can they possibly be involved in? Even with the best care and equipment in the world, what sort of life can they have? There is no equipment that will magically make them able to participate in life and do all the things able-bodied people can do, no matter how much we might wish there were. It isn’t ableism, but fact, to state that such a person suffering ‘locked-in’ syndrome or total paralysis is dependent on someone for everything and probably in constant pain.

I wouldn’t want to live like that and that isn’t social prejudice against disabled, because if I one day became, say, deaf or blind, I *would* want to live.

Sorry but some lives are objectively worse than others. Would anyone honestly rather live with a painful and debilitating condition?

I think that telling people they *don’t* have the right to die in case it contributes to a negative view of disabled people is actually just as wrong as the reverse. They do not wish to die because they have been brainwashed into thinking their lives are terrible, but because their lives *are* terrible.

I actually think anyone has a right to commit suicide, healthy and able-bodied or not. If some people who attempt it are glad it didn’t work well…without wishing to sound cold, too bad.

If someone tried to argue against abortion on the grounds that a few women might have one and regret it, we wouldn’t accept that argument because women are adults and get to make their own decisions.

I think people can mostly be trusted to make their own decisions, and make the right one for them.

Suicide can be a rational act if your life is simply unbearable. Most people who commit suicide *and I mean successfully, not those who attempt suicide – a different thing* (aside from disabled people) have suffered long-term mental illness that isn’t responding to treatment and/ or have an utterly ruined life and can’t see a way out, which doesn’t mean they are irrational.

Rather than taking it lightly and thinking ‘hey, I feel down today, why not commit suicide!’ I think most people actually consider it very carefully.

I think the idea that their life will turn around if they are discovered and prevented from doing so is naive, to be honest. Likewise the idea that all disabled people need is more care hours and some new gadgets. Not to push the analogy but it’s like when anti-abortion people insist that if women would just have the baybee they would make perfect mothers and all would be lovely. That’s…telling people what they need and what is good for them…I thought feminists tried not to do that?

None of this means I am against improving the lives of disabled people, which obviously is a good thing.

I can see the concerns that some people might be pushed into ‘assisted suicide’ by relatives who do not have their best interests at heart, and/ or do it because they feel they are a burden, and support safeguards to prevent that; the way to do that is to bring this into the open and make assisted suicide legal. This is why I like the idea of living wills, as Gadgetgal mentioned.

Everyone has the right to choose when and how to die; it should be ‘safe, legal and rare’.

Philippa Willitts // Posted 2 March 2010 at 6:40 pm

Thanks so much for this post Laura, I really agree.

As Clair argues, when healthy people are suicidal, “the usual response is to try to help them live better lives, not provide a solution which encourages them to die”. Why should disabled people be treated differently?

Absolutely.

Mercy // Posted 2 March 2010 at 8:20 pm

You can make Living Wills in the UK. Not all sections of a Living Will are legally enforceable, but even these sections allow you to set out your wishes in writing to act as guidance for next of kin and medical staff.

Nothing has changed here: assisting someone to take their own life is still illegal. Mercy killing is still murder. The Director of Public Prosecutions has clarified guidelines as to when a prosecution would not be in the public interest because the House of Lords ordered him to after the Debbie Purdy case. She wanted to know whether her husband accompanying her to Dignitas would be classed as ‘assisting her suicide’ and hence would he be prosecuted? She has a clear and sustained wish to take her life at the point she decides it is not longer beareable (she has motor neurone disease) and she wants to be with her loved ones and know they will not be prosecuted. I believe she should be allowed that right. Some have died alone because they didn’t want to take the risk that their loved ones would be prosecuted.

I also firmly believe people with disabilities also have the right to life and proper support to enable them to live that life. But that is a separate issue and separate campaign.

Clair Lewis // Posted 2 March 2010 at 8:54 pm

Hi Laura and thanks so much for your write up and explaining the issues so well from an ally perspective – or at least the issues as people in the disabled people’s movement (nationally and internationally) see them, on the whole.

It is great to see such a wide range of replies which are all well thought out and I can tell each is rooted in the same desire to not be colluding with abuse and oppression of disabled people, despite our varying conclusions, which is a welcome relief from the usual baseline starting point in public debate on these matters, which often don’t bother disguising the common belief that some lives are less worthy.

It is very hard to explain simply, or possibly in some ways impossible for people to fully understand who have not directly experienced the issues which those disabled people face who are confronted with these choices. The social prejudice that we face as a community is so ingrained that often it seems impossible for people to realise the sheer amount of pressure people are under, from all the sources I already listed. Many disabled people suffer deep rooted internalised oppression which means they collude with their lower social status and accept the crumbs they are fed, given that there’s a general belief that we’re better off dead (the best evidence of this being a normal viewpoint is UK’s discriminatory eugenic prenatal screening programme, in which almost everything happens AFTER parents have exercised their usual right to choice to remain pregnant and are past the usual legal termination date)

My piece is not inflammatory, it is a very simple equality based argument, which has been around for a very long time, it’s the same one which has had every assisted suicide bill thrown out of lords helped by the powerful work of a wonderful warrior from our movement, the indomitable Baroness Jane Cambell. Simply we need to make sure we value lives equally and if the public want legalised killing for suicidal people, then everyone should be entitled to this. The disabled people I know with similar impairments to euthanasia poster crips like Diane Pretty and Debbie Purdy all say that virtually nobody is actually incapable of committing suicide, but the culture of how assisting us to die is helping us has led people to believe they are somehow entitled to more comfortable methods, more reliable methods, because we really need it in a way others don’t. How can it possibly be equality to say that a suicidal disabled person is mentally competent when a non disabled one isn’t?!

In this country it is an automatic 14 year jail sentence for aiding and abetting suicide – and after the fact we only have a killers word for it on the matter of what actually happened.

Disabled people die because of neglect regularly, are murdered sometimes just through hatred, it seems a step in the wrong direction to further legalise and set in stone killing as an acceptable way to help someone. The genuinely ‘deathbed cases’ which are the people’s stories who win popular opinion, are already helped off the planet by physicians legally when it is genuinely needed.

Even the high profile few ever disabled (individual… no back up from others in our community) campaigers are asking for suicide based on how they *think* they will feel when they are experiencing levels of impairment which are new to them – as previously non disabled people, if you asked them years ago they’d probably have said if they lived the life they have now they’d already have killed themselves, it;s what happens to almost everyone who experiences this in real life, as opposed to their imagination.

The whole public thinks they would feel the same, and yet medical study after study proves (see links on my blog) that people with serious health problems are no more suicidal or unhappy than anyone else. In fact studies in the support services both here and in the states show the opposite – that the more severely people are impaired, the higher they rate their quality of life – probably because we appreciate life more, having stared death in the face on a regular basis.

And yes, we do in society block the wishes of the few for the greater good. All the time, especially if we think it puts others lives at risk, and even more if we thought people would get killed. Rapists want to rape. Killers want to kill. Racists want to attack. But their liberty to live out their wishes puts the lives of others at risk. So we do not allow it where we can intervene, (just as we do not ‘allow’ (collude in) suicides where we can intervene). This is the same – this legislation continues to put our lives at more an more risk, after all why give us freedom and equality, care packages and equipment when we’d be better off dead and nobody wants to be like us.

The level of prejudice apparent in nearly all mainstream reporting is abusive. If women or any other social group were talked about in this way the whole country would be up in arms. The only reason nobody is, is that prejudice about how terrible our lives are is so rife people can’t even see it, that’s just normal right? NOBODY wants to live our lives. but that doesnt mean we agree or most of us would have bumped ourselves off alreadY!

No actually despite the public thinking they’d nearly all kill themselves in x y or z circumstance, their horrified imaginings… nearly everyone who lives this as a real life doesn’t feel that way. And we all thought we’d probably want to die when we were healthy too. but actually life’s not like that. Nearly all of us want to be near our kids, our lovers, our friends, visit our favourite website, or even just under the sky for one more day and even the sickest of the sick people with the right aids can actually still see the sky, if their support staff can be arsed to make it possible.

Someone who has never experienced these kind of things cannot possibly imagine what it is like. Like still nobody knows (noone is checking) how many locked in people are not locked in. I know a couple of people who have previously been labelled vegitiative who just needed communication aids. And if someone has been ‘locked in’ they can’t express a desire to commit suicide.. you really want to die based on your imaginings? That is not assisted suicide, that gets into the realms of mercy killing, based on the viewpoint of a nondisabled previous untity, which is a totally different topic to me as nobody knows how they will feel til they experience something. It’s not

inhumane to be disabled, it’s inhumane to be left without the things we need.

Nobody can imagine our lives. No more than a man can imagine the whole life and every nuance of being a woman – even I don’t, it’s why I’m genderqueer ;-) . :-D

This is like that, and trust me, however badly you think I phrase my passionate view, we actually feel our lives are on the line and the majority viewpoint has been almost completely excluded from debate – wed have at least as much right to inform debate as anyone else – most people talking about it have no idea what our lives are like or why and are being blocked from hearing our views

It should not be denied that people who actually live these lives know best. Not the one or two who have been swallowed by fear and internalised oppression, but the majority, whose services continue to be put at risk because we are seen as less valid, and moves like legalising our killlings just give society someone easy to cop out to instead of making the changes we need to make life bearable, for almost everyone. If people had decent lives, they wouldn;t feel suicidal, this is the same for all people.

Is it not obvious that our lives being treated so differently affects us so deeply and society?

What if I said (and this is a lie, but it’s also a lie how many disabled people can;t commit suicide) – women fail at suicide more often than men, so we should legalise others killing the suicidal women if they are ‘competent’ (which under mental health law, suicidalness I understand is incompetence anyway, so we have to make women exempt from that too)? would people who are for assisted suicide, remain for it? What’s the difference? Is our suffereing as disabled people somehow more valid, less fixable, more ‘terrible’ than the suffering of women? Is our our presumed ‘weakness’ so much more profound or real than the ‘weakness’ of women?

I was two days ago with a child abuse survivor friend helping her stay out of an institution, after having just tried to jump from a window in a bid to die. She has a terrible life, it’s left her with bipolar disorder and she has trouble caring for her family, despite her being a loving and lovely person, she is deeply ill, the kids have already been in care once. She’s suffering, her whle family is suffering, and thwere is no easy way to fix it. Would she be better off dead? If not, why not? When I arrived rather than her right to commit suicide being preserved, there were two police and two paramedics there who wouldnt leave her until two advocates had arrived to rescue her. We don’t send her to Dignitas or get a nice strong man to kill her properly, do we? So why do us disabled need this assistance from the helpful nondisabled ones?

Why find solutions to her problems but not other people’s? What is it people really think is so different about us that we qualify for inequality on the most fundamental right – to exist. No disabled person whilst living under these social circumstances is making a fair choice, everyone is affected by discrimination and prejudice – just as me old dad used to say, the choice between death and a deadful life is ‘a choice between two shades of shit’.

For xample when we talk about the right to be pregnant or have a termination, women in this country do have a choice, it’s not perfect but the state will not leave us completely destitute and even the poorest women with no partner can claim benefits and raise a child. I know this because I am doing it as well.

There will be no incentive to continue to work towards equality and decent lives for our disabled population if there is a general consensus we can be killed instead and everyone is cool with that, in fact it’s helpful, kind, it’s equality (!). Even just allowing the tiny few with such dedicated suicidal tendencies their ‘rights’ in this matter, disabled people believe the majority are put at further risk, because we see it happen, we feel it ourselves, we are the people it would happen to. If anyone wishes to research their nazi history this same pattern was present in the Nazis – their killing spree began with their ‘useless eaters’ for the same economic burden and merciful reasons, it’s how their eventually huge program of extermination began and killing people began to be seen as a social responsiblity.,

Out of interest if those who remain unconvinced would like to research places like Dignitas, this is run by someone who is clearly an eugenicist, they will give almost anyone who wants to die a death (which actually isnt THAt dignified), for matter of grands, with no checks that their life could not be improved. They make money from killing, what do they care! They were hounded out of their premesis a couple of years back because neighbours were horrified at the way they went bout their work. When they lost their liscene for a whole, they carried on killing in the car park. It’s not dignity, it’s not mercy, but it’s a lucrative business which visitors have likened to a ‘back street abortion clinic’.

frankly // Posted 2 March 2010 at 8:55 pm

What a good post. It is refreshing to hear this alternative view when the media seems bent on us believing everyone who is disabled or has a terminal illness wants to die. I think you make a very good point about ableism.

Also, I would add that choosing one’s death is not a right. It is an event, which will come to everyone. The majority of the human race does not control when, where or how.

Elmo // Posted 2 March 2010 at 10:08 pm

But Butterfly wings, this is just it. There DO exsist people who can only move one eyelid who DONT want to die.

Think about Stephen Hawking. For people to just come along and say “oh, id kill myself if i were you, why do you bother going on?” can be very damaging. Im sure plenty of people in his position DO want to end their lives, but to assume all of them have totally given up and have no worth or use or shouldnt go on is not the way to think.

I know not everyone with conditions like his are science genius’, but even so, it doesnt render them any less precious as a human beings.

People should have the right to die. But I dont think any of us should be asking severly disabled people why they bother with life.

Julie K // Posted 3 March 2010 at 10:38 am

I do agree with much of what Clair, and others, have said here. The points about the public perception of “how would I feel if I were in that situation” echo something I have been thinking for a long time. It seems to me that at present there is a general public mood of “of course you would want to die if you were in that situation, how could anyone want to live like that” – expressed by people who have, of course, never experienced or in most cases ever been close to anybody with that level of disability. I have even heard offensive terms like “vegetable” bandied about by otherwise fairly enlightened people and it fills me with rage, because as Elmo says, every human life is precious. But it’s become almost taken as read by many people that life can’t be worth living with certain disabilities and that “of course” if they became “like that” they would want to die.

A case from a few years ago which springs to my mind here, and I’m sorry I can’t recall any details so I hope I have it right, concerned a young severely disabled boy, aged about 9 or 10, who was killed by his father. This was characterised in some quarters – and by the father’s legal defence – as a “mercy killing” when it seemed at the very least, doubtful that this was the case. Yet listening to discussion about the case, it seemed that for some people the mere fact that the boy had certain disabilities made his father’s action understandable, or even justifiable, despite the fact that the boy himself was clearly too young to “decide” (as his father claimed – I seem to remember him saying something like “I looked into his eyes and I knew he wanted to die” ), and his mother was devastated by what had occurred. I believe the father was cleared of murder but convicted of manslaughter but given a suspended sentence.

Sorry if I have this wrong, maybe someone else is more familiar with this particular case, but I remember finding it very disturbing.

I’m not saying that people shouldn’t have the right to die if this is their genuine wish and informed, consistent decision. But I believe this must be surrounded by many, many safeguards. The case cited in Laura’s original post above is a good example. Many people – disabled or not – consider suicide at some point in their lives when there seems no way out of a dreadful situation. It is easy to imagine that someone who had recently become severely ill or disabled may feel like this. But feelings can change and circumstances can change and a feeling of crisis may pass.

Louise // Posted 3 March 2010 at 10:58 am

@ Clair Lewis

The language you use in your original article and in your post here *is* inflammatory. Calling it “legalised killing” and repeating the word “killing” over and over is dangerously close to the rhetoric that anti-abortion campaigners use when trying to stir up emotive opposition to a woman’s right to choose what happens to her own body. The use of horror stories and the Nazi analogy towards the end of your post is also straight from their handbook of hate-speech.

Please don’t think I disagree with your message. I don’t. Disabled people need assistance to live. But I find the language you use to deliver your message offensive and some of your statements are factually untrue. There does indeed exist people who are incapable of ending their own lives when degenerative illness makes the acquisition and administering of the necessary drugs impossible and/or unsafe. The choice of when to die is theirs and theirs alone; people in this position who chose to end their lives deserve the same respect as those who choose to continue their lives.

All I’m asking you is to think more carefully about how the language you use is exclusionist and upsetting to those thousands of people who want to retain control over their right to die, and to those people who have been willing to assist a loved one in this act despite the emotional cost to themselves.

Julie K // Posted 3 March 2010 at 11:01 am

Butterflywings said:

“Sorry but some lives are objectively worse than others. Would anyone honestly rather live with a painful and debilitating condition?”

Of course some lives are more difficult than others. But what are you asking in your rhetorical question here? Would I rather live with a painful and debilitating condition, or live pain-free? Obviously the latter, but that isn’t generally a choice on offer. Would I, or anyone, rather live with such a condition, or die? Well, I can’t answer that on behalf of anyone who is in such a position, and I don’t think you can, either.

You state that “most people consider the decision to commit suicide very carefully”. Actually I am not sure this is the case. Evidence suggests that the main factors in “completed” suicide attempts are (a) the existence of a precipitating crisis and (b) the ready availability of lethal means. That is partly why doctors, dentists etc have a high rate of suicide – not just because they have more stressful lives than anyone else but because they have the necessary access and knowledge.

I am not suggesting that nobody ever carefully plans and carries through suicidal intentions. Of course, some people do. But in many cases suicidal ideation – especially though certainly not exclusively among young people – is a product of crisis due to situational factors and/or mental illness which may pass, with a change in circumstances and/or appropriate treatment. However if the means are readily available when the crisis is at its height, suicide may well be the result.

Phoebe // Posted 3 March 2010 at 11:18 am

Butterflywings, you’re creating a picture of a disabled person here (as many advocating assisted suicide do) so severely impaired that communication of a desire to die would actually be a complicated and improbable affair. This picture comes up a lot and is frequently used to horrify the non-disabled and draw on their fear of living as someone with severe/complex/multiple impairments. People who are severely impaired and can communicate are often capable of having themselves taken off whatever life support systems may be sustaining them. They have a choice to die. And if they can’t communicate why should it be up to anyone else to decide whether they want to die or not? That euthanistic posturing on the part of non-disabled people is the real horror here.

There have in fact been several cases where significant portions of people in institutions believed to be “in a persistent vegetative state” had their cases looked into by researchers (activists, relatives, and others) were found to be alert and capable of communication with the right communication strategies put in place (blinking, eyepointing, etc). It’s a sad part of the institutional process that disabled people get warehoused without really having their needs and best interests looked at sufficiently to spot these cases, but for all the people speculating that they’d want to die in such a situation, I can’t imagine not being desparate to live.

Of course speculation like that is easy to treat as some sort of abstract discussion. And because it’s so deeply rooted in hypothetical horror stories it’s meaningless.

Everyone already does have an equal right to die if they want to (unless they’re on suicide watch in some sort of institution, and maybe *that* needs some looking at in equality terms). People with profound or multiple impairments of the sort that usually get dragged up in these debates so long as they are actually capable of communicating at all are usually capable of finding some way to die if they want to. Even people who only have access to eye-pointing usually can control a powerchair and find an available river/canal/pier. Of course a lot of the time it’s the lack of equipment and other provisions for independant living that make people with profound physical impairments so depressed.

Ally` // Posted 3 March 2010 at 12:18 pm

I don’t see why anyone shouldn’t have access to a “more comfortable” way of dying, whether they are disabled or not.

It is acceptable to restrict choice when the choice would directly affect the bodily integrity or economic interests of third parties. It is not acceptable to restrict choice with what people do with their own bodies, in cases where it does not infringe on the bodily integrity of another person. That is why assisted suicide is different from killing or raping.

A J // Posted 3 March 2010 at 3:16 pm

Just to correct one really important thing mentioned in the article – the new guidelines issued by the DPP do *not*, as is claimed, “enable individuals to walk free from court if their decision to kill someone was motivated wholly by ‘compassion’ and that person was clearly determined to die”. Once the matter has reached court, it is already too late.

If the CPS have decided to charge a person with the offence, no matter how successfully they then prove in court that what they did had a good motive, or was consensual, or took place after months of pleading by the person whose suicide was assisted, they will still face almost certain conviction for this extremely serious offence. Once a prosecution decision is made, whether it is right or wrong, the law is then exactly the same as it always was – the guidelines change nothing in this respect. We all entirely reliant on one man, the DPP, not a judge, making the ‘right’ decision – there is no appeal if he does not.

This is part of the reason that the new guidelines are a far less appropriate solution that a sensible, considered law on the matter. A proper statutory framework whereby people could make their own end-of-life decisions would provide greater protection for vulnerable people, and, just as importantly, allow people, as far as possible, to chose their own end. Disability campaigners do not do themselves, or society, any favours or justice when they demand the continued criminalisation of actions that many people, of their own free will, wish to make, rather than looking at a serious approach to resolving the issues in a way which can enhance protections, but also enhance the freedom of individuals to make their own choices, without having to persuade a friend or relative to risk a lengthy prison sentence.

In Scotland, a bill brought by independent MSP Margo MacDonald (herself suffering from the degenerative Parkinson’s disease), along these lines, is about to begin consideration by Parliament. It’s not perfect, but it at least represents a proper attempt to find a solution which balances two difficult considerations. Sadly, the extremely powerful religious lobby in Scotland, ably assisted by some disability campaigners, mean the legislation has no chance of ever making it into law, even in a revised form.

Laura // Posted 3 March 2010 at 3:32 pm

My mistake, AJ, I’ve amended the post accordingly.

Elle // Posted 3 March 2010 at 7:15 pm

Phoebe – you said that “People with profound or multiple impairments of the sort that usually get dragged up in these debates so long as they are actually capable of communicating at all are usually capable of finding some way to die if they want to. Even people who only have access to eye-pointing usually can control a powerchair and find an available river/canal/pier.”

This statement misses the point completely! If people are physically disabled to the point of only being capable of eye movement, why should they be forced to seek drowning (or directing their chair under a bus, or off a cliff, or some equally horrific and painful end that may be unsuccessful) as opposed to a relatively painless, safe and guaranteed end with drugs? Why force them to die violently and alone when they could die in calm and safety, surrounded by loved ones?

Being able to die in some form or another is not enough. The same right to a safe, legal and painless death applies to the disabled and able-bodied alike.

saranga // Posted 3 March 2010 at 10:47 pm

@Butterflywings and anyone else who is having difficulty with understanding how disabled people may prefer to live with ‘a painful and debilitating condition’ rather than die, may i suggest that you go read the FWD/Forward website at http://disabledfeminists.com/ to try and understand the point of view of women with a wide range of disabilities, some of which are painful and debilitating conditions.

Butterflywings // Posted 6 March 2010 at 10:26 pm

Clair Lewis – I actually agree with much of your thoughtful comment. Of course disabled people are oppressed, and of

course, people who aren’t disabled cannot imagine what it is like to be disabled.

I actually believe everyone should be allowed to commit suicide, subject to safeguards to ensure it is not a

momentary phase of misery, and helped to do so in dignity. It is just another choice.

Yes, we do block the wishes of the few for the greater good *when that wish harms others* – in the cases you mention, obviously people cannot go around killing, raping, assulting others. I just don’t agree that some disabled people choosing to die does harm other disabled people. You may as well say that one woman having an abortion makes other women more likely to; if someone doesn’t believe in abortion, they are free not to have one, but shouldn’t restrict the rights of others to.

I would never tell anyone they would be better off dead, or even think it, that is a horrible thing to think.

However, I also would not tell them they should want to live, if they don’t. That is the point of choice, really; I might not approve of another person’s choice, I might be sure I wouldn’t make the same choice myself, but *I am not

them* so I don’t get to judge.

I can see that there is rhetoric that does assume that some disabled peoples’ lives must not be worth living and that is prejudiced, but that isn’t a reason to insist that someone’s life *is* worth living as only they get to make

that decision.

Elmo, of course there are people who can only move one eyelid who don’t want to die. I have not said there aren’t, still less that they should want to die. Of course asking anyone why they bother going on is offensive and I would never say that. As I said to Clair above, it is that person’s decision. If they do want to live, great, but some

people in that position wouldn’t. It is an individual choice.

Julie K, I can only refer you to my comments above that no-one should assume anyone’s life is not worth living – but that goes both ways, i.e. you can’t tell someone their life is worth living.

I disgree that every human life is precious…why is it? I just don’t believe in life at any cost. In response to your second comment, I am not answering that question (‘would you rather live with a disability, or die?’) on behalf of anyone, but saying it is their choice either way. With my earlier rhetorical question, i.e. would you rather have a disability or not have one, I was making the point that sometimes, some advocates seem to almost minimise the pain and debilitation involved in some disabling conditions; as if they are saying these don’t matter and if only society would not discriminate against disabled people, disability would not exist. It would. I can understand why the minimising happens in a society that does discriminate, but at the same time I don’t think it does anyone any favours to ignore the very real pain and discomfort involved in living with a severe disability, that in extreme cases may make some people want to die.

Phoebe, I do apologise if I was predictable. I was actually making the point that assistive technology cannot necessarily give someone a standard of life they consider worth living, so would not prevent some people with disabilities wishing to die. I wasn’t painting a picture of ‘horrors’ in order to advocate that people with disabilities should wish to die – interesting (mis)interpretation.

I absolutely wasn’t advocating ‘assisted suicide’ where the person isn’t capable of communicating and has never communicated their feelings about euthanasia – I agree, no-one can or should make that decision for another

person. That is why I advocate living wills.

I think the recent ‘revelation’ that someone in a persistent vegetative state was proved to be nonsense, though.

I am actually thinking of cases where people are able to communicate, and do communicate a wish to die. There was the rugby player a while back whose mother assisted him to die. No-one else would help him; they would not listen because he was ‘just having difficulty adapting’ and it was ‘just a phase’. This minimisation goes on a lot, and it is just as bad as saying someone who doesn’t *should* want to die, because again, no-one gets to make that choice for anyone else.

You say you can’t imagine not being desperate to live, but *I* would want to die – both viewpoints are valid, that

is what I am saying.

I think there are cases where people would like to die and can’t find a method of suicide; I find your picture of having to find a suitable pier etc. unrealistic and, as Elle also says, it is unfair that anyone should have to go to

such lengths.

Saranaga, you misunderstand. I am not ‘having difficulty understanding’ anyone, I am saying that either way, the decision whether to live or die is up to the individual concerned only.

No-one has any business telling anyone else what they should or shouldn’t do with their body, and that includes

the ultimate decision whether to live at all.

I have never said that all disabled people should die, are a burden etc. and don’t appreciate the reactions as if

I have. For all those who can imagine they would want to cling to life at any cost, try to imagine that not everyone

feels the same, that some cannot take the pain and that to want to die but be unable to do anything about it yourself

must be awful beyond imagining. I already conceded that some people *do* want to carry on. I am just saying that either way, it is the individual’s choice. As we cannot imagine what the life of a severely disabled person is like, we can’t say their life isn’t worth living, but we can’t say that it *is* – that is THEIR decision.

Have Your say

To comment, you must be registered with The F-Word. Not a member? Register. Already a member? Use the sign in button below

Sign in to the F-Word

Further Reading

Has The F-Word whet your appetite? Check out our Resources section, for listings of feminist blogs, campaigns, feminist networks in the UK, mailing lists, international and national websites and charities of interest.

Write for us!

Got something to say? Something to review? News to discuss? Well we want to hear from you! Click here for more info

  • The F-Word on Twitter
  • The F-Word on Facebook
  • Our XML Feeds