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Right to Life

Yesterday, there was an article in one of the more respected daily newspapers which stated that a survey in America had identified six medical conditions which had been rated, by hospitalised patients, as worse than death.

Really?

Worse than death?

Had any of the respondents to the survey actually experienced any of these conditions long term so they could make an informed decision or were they just guessing? Almost certainly not. I think that most people were, in fact, guessing.

I took a look at the list and, of the six conditions listed, I have experienced four of them and have lived with two on a daily basis for several years. Let me tell you guys, I reckon death would be far worse. Sure, these conditions are all things that can make life harder, a lot harder, but death would definitely be worse.

Death is not something you can learn to live with.

Death is not something you can get better from.

With death, you don’t get another try.

Death is the very end.

Finito.

I think the major problem we have here is fear. Fear of the unknown. For a start, all the people who took part in the survey were hospital in-patients. They were all people who were probably scared and worried and ill. According to the article, they were people with long-term conditions such as malignant cancer and heart failure. These were people who were scared and frightened by what was already happening to them, then they were given a list of other conditions and asked if a diagnosis with any of these would tip them over the edge. These people were sick and at a cross-roads, they were presented with a list of nasties and asked if they had a choice between them and death which would they chose.

Well, that’s not fair.

In those circumstances it is hardly surprising that death won. These people would have heard of all of these conditions, and may even know others who have experienced them, but they would have already been scared so asking a question like this, at that time, was wrong. Sure, the conditions listed are horrible and, for someone with no prior experience of a long-term, life changing medical condition, scarey, but, if these conditions are well managed and people receive proper treatment and care, there is not nearly as much to be scared of as you might think. Having to deal with any of the conditions listed can be difficult and, in some instances, unpleasant but, in my opinion, death would be worse. Furthermore, as this survey was conducted in the USA where people don’t have access to free, NHS care and participants would have to pay for treatment and care, this could have coloured their responses. Taking that into account however, of the six listed there is only one, ‘being confused all the time’ which actually would scare me. Even then, I’m still not sure if I would chose death as the way out. The others are, as far as I am concerned, all copable with. In fact, I have friends and acquaintances who do cope with them on a daily basis and they all have rounded and fulfilling lives. They are not sitting back longing for the Grim Reaper to call, they are out having fun and enjoying themselves.

I think this article is another attempt at promoting the thorny issue of Assisted Suicide. Running a story about what happens in another country is not right unless it emphasises the fact that it is another country and that things are different there. I’m not saying that people don’t have a right to choose, they do, but they need to know death is not the only choice available and what the situation is here. Sure, people should be able to go for the death option if that’s what they really want but they need to be given full, accurate information about other options available to them so they can make an informed choice and that doesn’t always happen and it should.

I hope that the newspaper in question runs another story about Britain in what happens here but I’m not expecting miracles. Balanced reporting would be nice for once but it probably won’t happen.

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Ok, Hollywood centred rant coming up….

There is a new film around that has really rattled my cage and made me angry.

‘Me Before You’.

This block-buster film is due out next month, release date in the UK 3rd June.

I have two major problems with it.

Firstly, the disabled male lead character is being played by a non-disabled actor. Just why? AREN’T THERE ANY DISABLED ACTORS IN THE WORLD? Why a non-disabled actor? It’s not right. Secondly, and in my opinion, more importantly, it seems to promote the idea that disabled people are better off dead. Just NO. As a severely disabled woman I don’t believe this is true. Being disabled is NOT a death sentence, it’s perfectly possible, to live a good and productive life and be disabled at the same time.

So. Let’s start by looking at the issue of non-disabled actors playing roles depicting disabled characters on screen, TV or on stage. What is the issue with casting one of the amazing disabled performers there are in these roles? Are film directors and TV producers trying to say there aren’t any or that they aren’t good enough? If that’s the case, they’re wrong. There are plenty of amazingly talented disabled performers just waiting for the chance to shine. Or could it be that these same directors and producers believe that using real disabled people might make the viewing public uncomfortable? If that’s the case, why should it? Disabled people are part of every-day society in real-life, why not in the fictitious worlds we all pay to join when we watch a film? We are seeing more and more racially appropriate actors playing diverse ethnic characters, why not let us have a fully representative cast when making something that includes a disabled person in the plot, especially when that character is one of the leads.

Then there is the subject matter of the film. Implying that disability is a tragedy and that disabled people should consider killing themselves rather than continuing to be a burden on their families and on society is so wrong. Disabled people have as much right to live their lives to the full as everyone else. Where do we draw the line? How are we supposed to decide who has a right to life and who doesn’t. Are we saying that some disabilities are worse than others? Ranking impairment by effect on the individual disabled person or on society as a whole. Who gets to make that decision. Who gets to play judge and jury? Does anyone have that right? If we legalise euthanasia, in my opinion, we’ll be starting down a slippery slope. Some disabled people may feel they have no option but to take their own lives because of the ‘burden’ they consider themselves to be on their families or even those who are actually pressurised into it by their families. Others may feel they just can’t go on. Many disabled people experience considerable pain and discomfort due to their impairments and that is the reason they cite for feeling they would be better off dead. Rather than looking at ways to put an end to that suffering through death, why can’t we put more money, time and effort into improving the provision of palliative care. Decent pain relief and more effective treatments should be the way to go, not endless discussions on our right to life at all.  

Then there is the issue of how disability affects both the individual themselves and the people in the wider community are impacted by having disabled people in their lives. If I hadn’t developed MS at 24 there are so many people I would never have met, so many friends I would never have made, so many things I would never have done, I would never have started writing – my writing has happened exclusively because I am disabled. I would never have done my Post Grad-Law qualification, I would have stopped after my first degree and stayed in public libraries for my entire career. I would never have worked for the organisations and employers that have employed me. I would have missed so much. Contrary to popular opinion, disability has not ruined my life, it has made it. Without my MS I would be a very different person doing very different things. 

‘Me Before You’ is one film I wish had never been made at all and I, for one, will not be rushing to the cinema to see it. In my opinion the actors are not right and the subject matter is controversial and wrong. Disability is not entertainment. It’s real life and should be treated as such.