I am seriously worried about the future. Not so much for me, because I am blessed to have the support I have, but for those people suffering from chronic illnesses and disability who are running out of options.
You may think I am being somewhat over dramatic here, but in reality, there is a problem, and it is being hidden, and there is a systematic assault on the very people who need protecting most. But the news doesn't report this. The voices are dim, the fights are weak. The most vociferous are often the most suffering. And this is wrong.
A couple of weeks back there was a march against the DLA/ESA reform in London, called the Hardest Hit. It barely featured in the 1 O Clock news, let alone the 6/10pm slots. Was almost one of those afterthoughts - those 'aah, isn't this nice, people in wheelchairs out for the day' type things. And then came the Daily Mail type comments; 'if they can get down to London to protest, they can jolly well work and stop scrounging off the taxpayers money'. There is a lack of empathy pervading society that shocks me and leaves me cold, and yet this could be just round the corner for any one of us.
I had a look at the new proposed criteria for the 'Personal Independence Plan' and only became more worried about the narrowing of criteria and the loss of dignity this will inevitably bring. I fear that many will now be caught in a trap; that of not being 'disabled enough' to gain disability benefits, and yet being too ill to be employed, not being able to get JSA because of not being able to get to the Jobcentre due to illness or lack of mobility, having lost mobility allowance....and so on, and so on. A vicious circle of ever decreasing proportions which may leave some at best housebound and despairing and at worst - well, let's not go there. As a society which prides itself on looking after its most vulnerable citizens, we are in danger of falling into a pit of unseen depths. If you still think I am being dramatic, please take some time to read this to see how this is already affecting thousands.
For me as a Christian, this is affecting me so much because of how we see people. Are people valuable, or are they commodities? Do people matter because they are people, because they are who they are, or because of what they can bring to society? As someone who believes all are made in God's image and all are inexplicably precious and amazing, it feels like these reforms may be devaluing and cutting off those who cannot fight for themselves, and this is utterly contrary to God's ways.
For me as someone with chronic illness, this is affecting me so much because I am reliant; on my family and on society as a whole to live. Perhaps for those who have no support system their thinking will soon verge on whether they have any value at all, whether it is worth fighting, whether it is better to give up, and stop burdening others.
I am worried about the future. The future looks cold. What are we going to do about it?
Showing posts with label value. Show all posts
Showing posts with label value. Show all posts
Tuesday, 24 May 2011
Sunday, 13 March 2011
What value on life?
I watched the BBC documentary 23 Week Babies the other night and it's been preying on my mind ever since. In the first case, pondering on the harrowing and unthinkable suffering parents of these incredibly premature babies go through, and endeavouring to imagine what it would be like (impossible to do so, really.) And then there are the dedicated health professionals involved in the process, and the decisions they have to make, decisions that could mean life or death, impossible decisions.
But the documentary threw up some deeply disturbing questions, questions about life, value, disability and euthanasia. The narrator recounted how the statistics of babies born at this gestation were terribly negative, that in fact it was rare that a baby would live. And this led to questions about whether it was even worth trying, or a waste of NHS resources, which could go to 'better use' elsewhere.
Alongside this questions were raised about quality of life, and whether it was worth saving babies who would go on to be disabled, and have 'poorer' quality of life, whatever that may mean (some of the 'disabilities' tiny preemies go on to have are poor eyesight or hearing, for example). While I appreciate the statistics are poor (although not as poor as this documentary contended, according to the ever-right mumsnet.com ;)) I do wonder about the consequences of statements such as the spoken and unspoken ones in this programme. If we say that one set of people are not worth ploughing resources into, what does it say about other sets that society may deem less than valuable? If it is not worth endeavouring to save a 23 week baby, is it worth saving somebody profoundly disabled? If phrases such as 'quality of life' are bandied round about these matters then there could so easily be a danger of the beginning of making medical decisions based on how low the quality of life of the patient is deemed to be, not necessarily about the patient. It is evident to me as well that some do take this further, and add lack of use into the equation. While most of society, I hope, are concerned with quality of life in terms of enjoyment and comfort, some seem to look at what someone puts into society, and if they are unable to, value is somehow thought of as lesser.
Now as you know, I have a wee bee in my bonnet about usefulness, particularly when it comes to living with disability or chronic illness.But even only with the scenario of judging based on quality of life, I worry that society may one day turn on the most vulnerable, and decide that their quality of life is so poor that it's not really worth putting resources into them, and the even scarier scenario of deciding at or before birth whether these people are worth 'keeping'. Now I realise this is slightly on the hysterical side, but I guess living on the edge with illness can cause dramatic mind wanderings at times :)
Mostly, my view on this is all taken up in how I see God seeing us, each one of us, 23 week baby or 91 year old cancer patient. We are valuable, we are loved and we are lovingly created to be in relationship with the God of the universe. I know it cannot be cut and dried, we cannot simply say 'everyone should be treated the same' but if there can be a view of value not based on quality of life and/or usefulness behind the decisions things may be different. Some may argue that we should leave things to take their natural cause, and that 23 week babies would never have survived before technology, but you could use this argument for any medical intervention. I wouldn't be alive if I'd been born 100 years ago, so that argument sits on somewhat shaky ground for me. The thing is, we have the technology, we have the expertise. Should we not use it?
But it's still not simple. The suffering the baby may go through undergoing such treatment is cited; but on the other side, we hear of the miracles, those 23 weekers getting through it and living delightful and loved lives (thanks to Mumsnet for many such testimonies). We cannot say that just because they may have disabilities they will not have good lives, we just cannot. Do ill people not deserve to live? Where can this line of thinking stop?
I realise I have asked a load of questions here, and not given answers. How can I? I feel wretched for the parents and wretched for the doctors. All I know for sure is that my father in heaven loves these tiny babies, and that they are people of value. In saying that, I can totally understand those parents who say it's time to let go, time to stop. I haven't walked in their shoes, and therefore I cannot make blanket statements about What Is Good or What God Wants.
I guess it all goes back to my mini mission: To speak for those whose voices have been dimmed, those who feel society has condemned them to a life of uselessness, those who feel they have no value because they cannot Do. May we never place a price on life, in whatever 'quality' that may be. May we simply be representatives of God's all encompassing love and grace, for all, in all times.
But the documentary threw up some deeply disturbing questions, questions about life, value, disability and euthanasia. The narrator recounted how the statistics of babies born at this gestation were terribly negative, that in fact it was rare that a baby would live. And this led to questions about whether it was even worth trying, or a waste of NHS resources, which could go to 'better use' elsewhere.
Alongside this questions were raised about quality of life, and whether it was worth saving babies who would go on to be disabled, and have 'poorer' quality of life, whatever that may mean (some of the 'disabilities' tiny preemies go on to have are poor eyesight or hearing, for example). While I appreciate the statistics are poor (although not as poor as this documentary contended, according to the ever-right mumsnet.com ;)) I do wonder about the consequences of statements such as the spoken and unspoken ones in this programme. If we say that one set of people are not worth ploughing resources into, what does it say about other sets that society may deem less than valuable? If it is not worth endeavouring to save a 23 week baby, is it worth saving somebody profoundly disabled? If phrases such as 'quality of life' are bandied round about these matters then there could so easily be a danger of the beginning of making medical decisions based on how low the quality of life of the patient is deemed to be, not necessarily about the patient. It is evident to me as well that some do take this further, and add lack of use into the equation. While most of society, I hope, are concerned with quality of life in terms of enjoyment and comfort, some seem to look at what someone puts into society, and if they are unable to, value is somehow thought of as lesser.
Now as you know, I have a wee bee in my bonnet about usefulness, particularly when it comes to living with disability or chronic illness.But even only with the scenario of judging based on quality of life, I worry that society may one day turn on the most vulnerable, and decide that their quality of life is so poor that it's not really worth putting resources into them, and the even scarier scenario of deciding at or before birth whether these people are worth 'keeping'. Now I realise this is slightly on the hysterical side, but I guess living on the edge with illness can cause dramatic mind wanderings at times :)
Mostly, my view on this is all taken up in how I see God seeing us, each one of us, 23 week baby or 91 year old cancer patient. We are valuable, we are loved and we are lovingly created to be in relationship with the God of the universe. I know it cannot be cut and dried, we cannot simply say 'everyone should be treated the same' but if there can be a view of value not based on quality of life and/or usefulness behind the decisions things may be different. Some may argue that we should leave things to take their natural cause, and that 23 week babies would never have survived before technology, but you could use this argument for any medical intervention. I wouldn't be alive if I'd been born 100 years ago, so that argument sits on somewhat shaky ground for me. The thing is, we have the technology, we have the expertise. Should we not use it?
But it's still not simple. The suffering the baby may go through undergoing such treatment is cited; but on the other side, we hear of the miracles, those 23 weekers getting through it and living delightful and loved lives (thanks to Mumsnet for many such testimonies). We cannot say that just because they may have disabilities they will not have good lives, we just cannot. Do ill people not deserve to live? Where can this line of thinking stop?
I realise I have asked a load of questions here, and not given answers. How can I? I feel wretched for the parents and wretched for the doctors. All I know for sure is that my father in heaven loves these tiny babies, and that they are people of value. In saying that, I can totally understand those parents who say it's time to let go, time to stop. I haven't walked in their shoes, and therefore I cannot make blanket statements about What Is Good or What God Wants.
I guess it all goes back to my mini mission: To speak for those whose voices have been dimmed, those who feel society has condemned them to a life of uselessness, those who feel they have no value because they cannot Do. May we never place a price on life, in whatever 'quality' that may be. May we simply be representatives of God's all encompassing love and grace, for all, in all times.
Labels:
babies,
disability,
grace,
love,
productivity,
suffering,
usefulness,
value,
weakness
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