Wednesday, May 01, 2013

The Right To Live And The Right To Die - #BADD2013

There are two bills scheduled for debate in the House of Lords in the near future, at first glance they may seem completely unrelated, but in fact are inextricably interlinked - social care and assisted dying. The vast majority of rules and regulations which govern the lives of disabled people are legislated for by those without disabilities, although there are a handful of disabled Peers or MP's, these two bills are no exception from that dissonance between those who make rules and those who have to live by those rules. 

Social care is currently in a precarious state - a system that was already stretched to breaking point prior to the change in government is fracturing at the seams from the cumulative impact of austerity and ignorance. When social care is mentioned in the media the primary focus is always on the care (or lack of)  provided to older people, but working age disabled people make up a third of the total recipients. Of these working age disabled people, those with the most severe disabilities who were previously able to access the ILF to match the funding provided by their local authority, will all be funded fully from their local authority, who of course will not be provided with a commensurate increase in funding from central government, but will have to attempt to accomodate this extra cost burden from within existing adult social care budgets, which are being reduced by an average of 28% by 2015.

Accessing social care as a working age disabled person is far from easy - it involves a lengthy, complex process of assessments, tick boxes and in most local authorities a pretence of choice. In reality what that tends to mean is that the disabled person only has choice and control over their life if their choices match those their social services department deem acceptable. This means that even before the full impact of budget reductions to Local Authorities, the closure of the ILF and other welfare cuts impacting on individuals and communities the vast majority of adult social services departments are breaking under the strain. Once past 2015, factoring in the full impact both of budget restrictions and the potential loss of income to Social Service's departments currently paid by charges from the care recipients DLA award as disabled people move through the new PIP assessment, which the government predict will be available to 600, 000 fewer disabled adults, the situation will become catastrophic.

So, what does all this have to do with assisted dying? Its simple - quality of life. We can all empathise on a very human level with people like Tony Nicklinson. Tony felt his life as a quadriplegic was intolerable and before he died of natural causes, he campaigned for the right to die on his own terms. For me, there is a particular, personal concern about assisted dying and high level spinal cord injury - the instability in my neck means that such an injury is more likely for me than the average population. This means I have considered how I would personally feel in such a situation. The only honest thing I can say with certainty is that I do not know how I would feel about facing the future with such a significant disability, and that I hope, but can't be sure I would eventually adjust to the situation and find a new, different quality of life. But I don't know that - it could be that like Tony I would find the situation unbearable and be desparate but unable to end my own life. 

Despite that, I still firmly believe that legalising assisted dying in the current socio-political climate is dangerous and should be prevented. The 'social model' is a theoretical model created by disabled people to demonstrate that it is actually an inaccessible society which causes disability, not the primary, medical model based idea that impairment is caused by failings on the part of the individual, ie disease or disability. The social model does not seek to cure, but to explain that with the removal of barriers to access, participation in society increases consequentially. Although the social model can be controversial amongst disabled people, applying its inherent principles to policy making is one way of making them as accessible to as many people as possible. Improved physical access doesn't just benefit disabled people, but if done properly, everyone - older people and parents with young children.

It can be argued that assisted dying sits firmly within social model territory - if a disabled person requires access to live independently then the assistance to end their life is as much a right as the assistance to live their lives. But therein is the inherent problem with both social care and assisted dying - there is currently no easily enforceable, statutory right to the care, equipment and financial assistance disabled people need to live a truly independent life. Within a rights based framework the right to die would fit alongside the right to live - after all being born and dying are the most natural part of any human life and with the correct assistance disabled people can be enabled to make that choice for themselves just as they can be enabled to parent, shop, swim or work.

This brings us back to issues surrounding quality of life - with the correct support to live an independent, self determined life disabled people can make their own value judgement on their quality of life. However, with many disabled people no longer qualifying for welfare benefits or social care that quality of life is impaired by not having the right to the support needed to live independently. It can be argued, successfully I suspect, that without that right being present there is an element of duress in every situation that might lead to assisted dying. As Lord Scarman described so well in relation to economic choices within contract law;

"The classic case of duress is, however, not the lack of will to submit but the victim's intentional submission arising from the realisation that there is no other practical choice open to him"

This element of choice is critical, especially within the framework of austerity. Consider what makes most people feel their lives are worth living - being a member of a family, having friends, being able to work, to socialise, to have hobbies or interests. Whatever those individual choices are they are too an extent universal - the security of those factors is what makes most of us happy. Lord Scarman is talking about contractual decisions, but it applies perfectly to assisted dying because what that is really about for most people is practical choice. 

The government have made certain practical choices to deal with austerity - they have chosen to place the burden of cuts on the most vulnerable. This in turn affects the ability of individuals to exert practical choice and control over their own lives. Without sufficient support to access society, to participate in everyday activities quality of life is severely reduced. If the practical choice is available and enforceable to have the support to access all those essential areas of life, then the nature of that individual value judgement on their quality of life changes. Without that practical choice there is an inherent element of duress in every decision about living, let alone dying. Within the legal framework surrounding economic or contractual decisions, the contract is considered to be void if there is an element of duress, it does not take an enormous leap to understand how that element of duress present in decisions about assisted dying should equally mean the decision is considered void and therefore should remain illegal. 

The fear of becoming disabled is widespread in society, disabled people are used to hearing people tell us that 'they would die' if they couldn't 'walk, run, swim, work' etc. The reasons for this are complex, partly based upon fear of the unknown and the prejudicial attitudes to disabled people inherent in society. Its also understandable, less than 10% of disabled people are born with their impairment, the vast majority will become disabled in adult life, whether via accident or more commonly illness. Becoming disabled is distressing and challenging, but the vast majority of people go through the stages of grief and eventually learn to be happy with a very different life than they may have expected. Different can often mean more rewarding. 

That understandable fear means that most people do not realise that living as a disabled person can be a happier, fuller life than it was before disability. It means that people see death as a better option, not knowing that disability is just one of the many experiences life throws at people, and that it is how we as individuals are able to deal with those experiences which most influences that qualify of life. 

Today is the eighth annual Blogging Against Disablism Day (#BADD) hosted by the fantastic Diary of A Goldfish. It will be my seventh #BADD and I've watched with interest and sadness how the focus of many of the blogs written for the day have moved away from independent living to the impacts of austerity. Cuts to welfare impact human beings, particularly so upon disabled people. Quite literally, when the government cut, we bleed. The consequence of increased poverty and exclusion from the world is one issue, but when put alongside the increased focus on working it is quite another. What this means in practical terms is that it was quite bad enough for disabled people when all we had to deal with was exclusion - it is frustrating to be unable to access the world because you are excluded by that world, but a terrifying Orwellian nightmare to be excluded, blamed for that exclusion and expected to participate more fully. 

So, until such time as all disabled people have a legally enforceable right to independent living I will, albeit reluctantly, remain opposed to and campaign against assisted dying. I will put my time and effort into something which would benefit all our lives, where the right to assistance to die is built into that framework of the right to live, where if assisted death is an individual's choice it can be made freely and without duress.


britishroses said...


Ron Graves said...

I agree entirely with the sentiments expressed re this lethal government and assisted dying, but I would like to make a personal point.

I have, over the years, come close to pulling the plug maybe 4 - 5 times, but always backed off. That's mainly because my death would needlessly distress too many people (but would doubtlessly cheer up a few charmless souls too!), and as time goes by the former numbers increase, making the decision harder. So I'm still here. It's fair to say, too, that so far the fear of taking my own life has been a major influence on my not doing so. I'm not religious, but the idea of chugging pills and waiting to die fills me with horror. If I go, I need to go quickly. And painlessly.

When the time comes, as I believe it will, when intolerable outweighs all other considerations (I've come very close to death from starvation recently, and am now terminally ill, so any action I take would merely be pre-empting the inevitable), I hope that (A) no-one tries to get in my way, and (B), those I care about, and who care about me, can accept that, by then, I shall have given my life my best shot and have nothing left to give. There is no virtue in needless suffering.

NB: This is NOT a suicide note - just making a point.

The Goldfish said...

This is an excellent and sensitive post, K. It is extremely poignant to me that there is far, far more media attention on disabled people who want to die against disabled people who want to improve their quality of life from rock bottom.

Meanwhile, we treat physical impairments completely differently to other major life events that can make people feel their life is over. Bereavement, divorce, abuse, losing a job and failing at a career are things that can take years to come to terms with, and easily throw people into a state where they think they can't go on. And we sympathise, but we'd never say, "Yeah, see what you mean. Cheerio then!"

Yet if you become disabled, and struggle to come to terms with that, that's somehow treated as a rational position and awarded screen time and column inches.

I really do think we will move to a position where euthanasia is acceptable at the end of life (more than it is already - many cancer patients die from the effects of diamorphine when their bodies might have fought on a few more days or weeks). And it would be great if disabled people could choose to do anything a non-disabled person could choose to do.

But just now, in this political and social environment, the Assisted Dying Bill would put disabled people in a position where they had bleak options non-disabled people would never face.

Anyway, very rambly comment but thanks very much for contributing to BADD once again!

(if this is a duplicate, my apologies - I just found this tab open and now I don't know if I submitted a comment earlier or not)

Never That Easy said...

It's so disheartening that quality of life is so ignored when discussions of laws and end of life come up: how can people not understand the connection between the two? Your post is a sensitive and thorough look at a hard topic, kudos.

James said...

In itself, I support the right to euthanasia; having family who work in mental health, we've discussed and agreed that there are degenerative conditions we would not want to live with. The risk of someone being pressured into euthanasia for reasons which are not their own, though, does worry me when considering changes in the law. (Physical disabilities are a very different kettle of fish for me - but the idea of slowly losing mental faculties is terrifying and there's very little that can be done to help there.)

Tanya Marlow said...

This is a wonderful piece. When the government cut, we bleed. yES