Tuesday, 13 June 2017

Charly Gard - Should parents have the ultimate say in whether their child lives or dies?

Tonight judges at the European court of human rights have ruled that a ten month old baby should be kept on life support in order that his parents be given time to present evidence in order to allow him to travel to America for experimental treatment.  

Charly Gard  was born with Mitochondrial Depletion Syndrome which has left him unable to sea, hear, cry or move, and he has been on life support at the Great Ormond Street hospital in London since October 2016.   But doctors at the hospital feel that he should be allowed to die peacefully as there is no hope of any kind of recovery. 

The parents have been to court on numerous occasions in order to be allowed to take Charly to America for experimental treatment at a cost of over £1m, however doctors at GOSH have argued that this would not be in his interests and that any treatment would merely prolong his suffering and not reverse any existing brain damage.  

I think at this point it needs to be said that there are no winners in this case.  For a parent, allowing your child to die goes against every parental instinct you possess. No-one expects to out-live their child, and so actively making a decision to allow that child to die is something which most parents would never be able to anticipate having to do.  And for the doctors arguing that a peaceful death would be in Charly's best interests, this too goes against the oaths they sign up to when qualifying from medical school.  No doctor wants to be making the decision to switch off a baby's life support, let alone be the one having to do it. 

However, I think it can also be said that parents are very rarely able to make such decisions objectively, as this is their child they are talking about, and this is why these cases so often end up in the courts.  

So the question that we need to ask ourselves is: should a baby be kept alive because it is the parents' wish that he be kept alive?  When making decisions which make allowances for the withdrawal of treatments, should there not be only one outcome - what is in the best interests of the patient?  

I know that many people have argued that the decision should be the parents' to make, however can any parent really say that they could objectively make the right decision which was in the interests of their child and not based in some part on their own sense of loss or failure to be able to do something?  Even if logically there was nothing which could be done?  

And how many people wanting this baby to be kept alive, taken to America on a journey which he may not survive, and subjected to treatment which has no possibility of success other than potentially lengthening this baby's already difficult life?  A life where he is unable to communicate even whether he is in pain would want another adult to be making those same decisions about them or on their behalf?  I know I wouldn't.  

In conclusion, I hope that were I ever in the same position, I could make the right decision for my child, and I hope that were I in the same position as an adult, the other adults in my life would make the right decision for me.  

I only hope I never have to find out, and wish nothing but peace to Charly and his family.  

Friday, 28 August 2015

The human face of the migrants we choose to dehumanise.

Over the past few months there have been increasing numbers of stories in the news about the migrants at Calais who are attempting to come to Britain through the Channel tunnel.  There has been increasing footage of refugees attempting to gain access to lorries, or storming the fences at the entrance of the tunnel in the hopes of being able to come here  to claim asylum.  

And with the footage there has been increased amounts of criticism, of the government for "making Britain a desirable place to come to," of the French police for not doing more to prevent refugees from coming over the border, and mostly the refugees themselves for daring to try to escape from circumstances which most of us cannot even imagine, and to risk their lives and those of their children, in order to find a safe and better life for themselves in a European country.  

Even the BBC received a number of complaints for filming a make-shift church in the Calais refugee camp for Songs of Praise, because it showed the refugees as being too human for some elements of the media to want to contemplate.  

As a society we have reduced human beings to animals in order to justify the hatred of them.  

But in the past week the news has covered a different angle to the migrant crisis.  Earlier this week around 200 refugees were thought to have drowned when two boats sank off the coast of Libya, and on Thursday there were shocking reports of the discovery of 71 bodies of what are thought to be Syrian refugees in a refrigeration truck in Austria.  And suddenly society is in shock, and asking why we are not doing more to prevent these tragic deaths, and why traffickers are able to exploit the desperation of people who are prepared to climb into a lorry with their children, and allow themselves to be sealed inside, not knowing whether they will actually ever make it to their intended destination.  

But we seem to have a double standard  approach to all this.  We can sympathise with the plight of people drowning off the coast of Libya, and the idea of people suffocating in a truck in Austria is abhorrent.  But those things have happened somewhere else, and as such we find ourselves empathising with what they have gone through.  And yet for every boat which sinks off the coast of Libya there are hundreds more which make it to the other side, and for every death in a lorry there will be hundreds more people who make it through alive, and some of those will inevitably end up in the refugee camps of Calais, where they will hope to make it across the border into Britain.  

The people of Calais who we as a society have dehumanised all started their journeys on boats like the ones in Libya, or lorries such as the one in Austria.  A different boat, a different lorry, and any one of the dehumanised refugees of Calais could be one of the mourned dead of Libya or Austria.  

In order to gain the empathy of our society it seems that people have to die, but daring to live, to make it through the harshest, most unimaginable conditions means that instead of deserving of empathy for where they have come from, these people are now seen as a  scourge on our society, a threat to our jobs, houses and benefits.  

I can't help wondering whether people would still be expressing upset and shock if the Austrian lorry had instead been discovered in Dover, or whether people would actually identify the people they may have seen on a news broadcast running towards the tunnel as the same people who could lose their lives on the back of a lorry they might hope to gain access to.

Thursday, 12 February 2015

Why would you want Christian Grey as your valentine?

This weekend is valentines.  And along with all the romance this brings, we will also see the release of the film 50 Shades of Grey.  

100 million women bought and digested the books, and it is anticipated that they will be going to see the film in their droves, to watch as 21 year old Anastasia is swept off her feet by the rich, handsome, and incredibly controlling and manipulative Christian Grey.  Romantic?  apparently some people seem to think so.  But leading women's abuse charities have begun a campaign to encourage women to boycott this film as it is seen by them as normalising domestic abuse.  

So let's give a bit of background for those who have not read the books.  

Ana is a 21 year old student who agrees to interview prominent and influential businessman Christian Grey on behalf of a friend who is ill and needs the interview as part of her university dissertation.  Ana is in awe of the fact she will be interviewing Grey.  He is well known, he is attractive, and he is extremely rich.  

From the outset it seems clear that Christian Grey is a man who is used to getting what he wants, and from the beginning it is evident that he wants Ana.  

So, having interviewed him, Ana goes back to her life as a student, and as an assistant in a hardware shop, and just days later christian Grey appears at her till, where he has bought a variety of products, rope, cable ties, and some kind of tape.  Well it is a hardware store after all.  The fact he actually lives hours away is seemingly inconsequential, and over the coming days and nights he seeks to sweep Ana off her feet, by firstly rescuing her from the advances of a male friend after she had had too much to drink, taking her back to his hotel where he in true gentleman style does not take advantage of her, and then whisking her off to his flat by private plane for a nice dinner.  

So far, so romantic.  After all, Christian Grey is extremely powerful, he could choose any woman, and yet he has chosen Ana.  

This could be the beginning of a beautiful love story.  One where man meets woman, where they discover themselves and each other, and where their relationship grows as they get to know each other.  

Except that the next morning Christian Grey presents Ana with a contract.  A contract in which she must agree to be his submissive and he her dominant, where she will agree to wear the clothes he specifies, eat the food he tells her, and most importantly, submit to him in every other way.  Before she signs the contract he first takes her to see his playroom.  A room in his apartment which is full of the various whips, chains, handcuffs, and other implements used as part of the submissive/dominant relationship.  

I won't go into too much more detail, other than to say that throughout the course of the book it appears that Ana and Grey are actually falling in love.  However the story is littered with instances of where he takes absolute control of her life, and where the term consent appears to have very little meaning.  She can say no to anything, of course, but when she does she's told that actually, she can't.  And throughout the trilogy, Ana decides that actually, this isn't the relationship she wants, so she makes a stand and lets it be known what she wants, and  in the end, love conquers all and Christian Grey changes into the man Ana wanted him to be.  , leaving the message that if a relationship is controlling and abusive in the beginning that can change as long as you stick around.  

Now it would be a bit simplistic to suggest that a film alone mmight be able to influence people into entering into, or staying in abusive relationships believing that it's normal to be treated like that.  However it is also true to say that we are influenced by what we see in the media on an every day basis.  

Many, many women stay in abusive relationships believing that their abuser could change, because even abusers have  a nice side to their personalities, something which attracts their victims to them, so if Christian Grey is portrayed as a generally nice guy who has a bit of a past which explains his attitude towards women, but who dictates to his girlfriend where she can go, who she can see, what she can eat and how the rest of their relationship should be conducted and he can change, then surely it stands to reason that any man can change?

But this is a fantasy.  Most abusers do not change.  I won't go so far as to say they can't because with the right kind of therapy anyone should be able to change.  But I think it's fair to say that most abusers do not change, and for most victims of abuse the only way they can gain control is by leaving the abuser.  

50 shades is of course not marketed as a film depicting an abusive relationship.  It has been marketed as a romantic film which leads someone into the world of BDSM.  But we have heard from critics that it is not an accurate portrayal of BDSM, and as such, the behaviors exhibited in the book are those of a controlling and abusive man rather than one who has absolute respect for his partner.  

But perhaps the question would simply be why?  Why would you want to watch a film where a woman is dominated and controlled in this way and dress it up as romance?  Why would anyone want to fantasise about having a Christian Grey type in their life?  A lot of films are pure escapism from life, and of course most don't depict reality.  But surely escapism should be something positive and uplifting, or even if it's negative such as a drama or thriller, something with a  positive ending where the killer gets what they deserve.  But why would anyone want to escape into the realms of fantasy where someone is essentially taken from her world of innocence and thrown into one of sadistic control?  

It's not a thriller or a drama, neither is it particularly romantic, so what is it then?  

And if none of those are good enough reasons not to watch, then surely the fact that the books were so spectacularly badly written are good enough reason not to want to watch them played out on screen?  

Tuesday, 3 February 2015

three person babies - do we have the right to play God?

Today MP’s voted in favour of allowing the UK to become the first country to create babies using two women and one man.  The procedure is aimed towards being able to create babies who are free from mitochondrial disease, a devastating genetic condition which results in death. 


In this procedure, the mitochondria will be removed from the egg of the woman who carries the condition, and replaced with the mitochondria from the egg of a donor woman, thus resulting in a baby which will be genetically related to three people.


For me this brings up several issues.  The first is the deeply emotive possibility of being able to ensure that a baby does not carry a genetic condition from which he or she will almost certainly die, or being born a carrier of a condition which might be passed to future generations. 


Eradicating disability is controversial, because those who have a disability often see this as society’s desire too eliminate people like them from existence.  However choosing to have a baby knowing that it might carry a genetic condition and thus could be born with a disability is one which most people do not take lightly.  When the condition in question is one which will ultimately result in early death many parents opt to not have a baby at all rather than go through the process of falling pregnant and the subsequent heartbreak of losing their child. 


It is therefore understandable that parents would want to have a baby that did not carry such a devastating condition, not only for themselves, but because no parent willingly wants to put their child through any kind of pain and much less an agonising early death. 


However the other issue that this procedure raises is one of moral and ethical concern.  In order to create an embrio free from mitochondrial disorder that baby will in effect be related to three people, rather than two.  And while it has been confirmed that no character traits of the third person will be transferred to the baby, there is no escaping the fact that we are tampering with the laws of nature in order to create a baby free from a disease.


I’ve heard arguments that every time we treat an illness, create a vaccine, invent a new medical treatment we are tampering with nature.  But this is different.  This is creating life at the very beginning, interfering with the common building blocks of life by creating a baby from not two parents as nature intended, but three.  Regardless of the fact that there are currently no physical or personality traits involved in this process, we are none the less re-defining the process of procreation.


And once you start down this route, where does it end?  People talk of designer babies, a term which I personally do not like, however it is surely only a matter of time before a process designed to eradicate certain conditions will be open to misuse.   


We already have procedures to eliminate certain disabilities through a process called pre-implantation genetic diagnosis (pgd), whereby embrio’s carrying certain conditions are discarded during an IVF cycle, and only those embrio’s which do not carry the condition are implanted back into the uterus.  This process is already being used in other countries such as Spain and Cyprus to allow parents to select the gender of their baby, so the “designer” possibility has already begun to be a reality.


And what of the future?  This treatment is still in its inphancy, and so it is therefore not possible to know what will happen in the future with regards to an adult who has three genetic links having children of their own.  By the time the ramifications of this treatment become truly known, those who pioneered it may no longer be around, and we will face the possibility of genetically modified adults having to face a whole new problem with conditions related to genetic modification which cannot become known until they emerge, by which time genetic modification will not be able to be undone. 


Most of us wouldn’t want to buy genetically modified products in the supermarket, so why are we so on board with creating genetically modified human beings? 


The reasons for doing so are of course emotional, and I can of course only sympathise with anyone who has been through the loss of a child due to a genetic condition which could in future be iradicated.


But while I think it is possible to marvel at what can be achieved through science, I also think that sometimes, just because something can be done, doesn’t mean that it should.

Sunday, 2 March 2014

take your bets on the pestorius trial while you watch it live... have we lost sight of why this is even happening?

Tomorrow sees the start of the murder trial of South African paralympic champion Oscar Pestorius.  Pestorius, who won two gold and one silver medals in the 2012 Paralympics shot and killed his girlfriend Reeva Steenkamp at his home on 14 February 2013, but maintained that he believed her to be an intruder hiding behind a bathroom door, and didn’t realise that it was his girlfriend until he had fired four bullets through it. 


It is of course natural that the world will be taking an interest in this trial, both because pestorius is somewhat of a hero for his Paralympic achievements but also because he has overcome adversity to get where he is, and the thought of someone doing that and then turning out to potentially be a murderer does not, as a general rule, sit well with people.


However,, it would seem that this trial is entering a new dimension of world interest due to the fact that it was announced last week that large parts of the trial will be broadcast both on television and radio.  This of course means that the world’s press will have access to this broadcast and they will, of course, be able to broadcast it on news outlets around the world.  Our own Sky News have in fact been advertising the fact that coverage of the Pestorius trial will be broadcast during the day and at 9:00 every night. 


It’s not unusual for criminal trials to be televised.  In the US the televisation of trials is in fact quite common and has been for a number of years. I remember in fact that the OJ Simpson trial was televised in the mid 90’s, as was the trial of Louise Woodward, the British Nanny who was found guilty of murdering a baby in her care, a conviction which was subsequently reduced to manslaughter.


But this is the first time that South Africa has broadcast a trial, and I can’t help wondering why A, there seems to be the need to do so, and B, who wants to watch it and why. 


Perhaps it is because South Africa does unfortunately have a reputation for having a rather corrupt legal system, and the televisation of this trial could show the world that their legal system is in fact firm and fair and that Pestorius will receive a fair hearing.  Or perhaps it is because the television company who will be broadcasting this sees this as an opportunity to gain a bit more world recognission.  Or perhaps, in fact, it is being broadcast because someone somewhere feels that as Oscar Pestorius is a world recognised figure, broadcasting his trial is somehow in the public interest.  Or perhaps it interests the public...


But I have to wonder about this need for the public to follow the trial and possible conviction of a man who killed his girlfriend as if it is some kind of courtroom drama. 


It is one thing to follow the details of  a trial when the case is high profile.  As human beings we have a fascination both with crime and with celebrities.  Throw those two together and you end up with an almost irresistible combination. 


But it is quite another to sit in front of your television and watch the coverage as it unfolds, taking in the detail, perhaps making your judgements while you do so.  And it is also worth bearing in mind at this point that much of the evidence (and a considerable amount of speculation) is already in the public domain due to the fact that the bail hearing, which took several days, presented much of the evidence which was then published widely in the international press. 


But there is another turn to this.  This week bookies Paddypower have been criticised for advertising the fact that they are taking bets on the outcome of the Pestorius trial, with 7-4 odds for him to be found guilty and 4-2 not guilty.  Today they have gone one further by offering refunds on any bets if pestorius “walks.” 


Naturally complaints have been made to the Advertising Standards Authority, however it is too late as the advert has already been broadcast and no doubt there are people out there who will have gone into paddypower and placed bets to that effect.


It is like a boxing match, with people waiting for the action and placing their bets while they do so. 


And at the centre of all of this a young woman was shot and killed by the man she believed loved her, a man she may (or may not) have trusted.  Yet she has seemingly been forgotten in the feeding frenzy that is the media and the general public, desperate to catch every detail of this trial, desperate to know whether or not Oscar Pestorius did in fact mean to murder his girlfriend.


This trial is not in fact about Oscar Pestorius.  There is no question that he pulled the trigger of the gun which killed Reeva Steenkamp. If he is found guilty he will hopefully serve a significant sentence for his crime.  If he is found not guilty of murder he will be left to rebuild his life in the knowledge that he killed a young woman. 


This trial is not about needing to show the world’s press that South Africa has a true and fair justice system.


It is not about providing entertainment for the world’s voyeurs and rubberneckers desperate to  see whether their hero did it or not, or as something to watch with the morning cup of tea.


It is not about opportunities for the likes of Paddypower to make money by encouraging people to place their bets as to whether he did or didn’t do it.


In truth this trial is about Reeva Steenkamp, and the justice which she deserves.  She is not here to tell the court what happened on that fateful night, and therefore the evidence has to do that for her.  We can only hope that it will do just that, and that somewhere in the media circus that is the Oscar Pestorius trial, someone will actually take a step back and remember that all this is only made possible due to the fact that a young woman is dead.

Monday, 25 November 2013

Clare's law - the police still don't hold the answer

A law which enables women to check out the potential violent pasts of their new partners is to be expanded nationwide in March 2014.  

I wrote about Clare's law  Last year when the pilot was first launched across several counties in England and Wales, and questioned whether women really would seek to find out whether their partner had a history of violence, and whether men should be happy to submit themselves to such scrutiny on the basis that if they have nothing to hide then it doesn’t matter. 

Interestingly the articles I have read about the expansion of this law have not given any indication as to the success of the pilot scheme, actually there has been reporting that police have been confused about what kind of information should be given.  And yet the scheme is being expanded, and I can’t help wondering why, and whether anyone really benefits, or whether this is just a way to make it look as if more is being done to prevent domestic violence without actually doing anything more, but putting the onus back on to the potential victims.  

Last year 88 women were killed by abusive partners.  That’s just under two women a week.  I wonder how many of those abusive partners had a history of domestic violence that was known to the authorities.  I wonder how many of those women would have gone to the authorities to check out their partner’s history before embarking on a relationship with them, and if so, whether they would have decided against starting the relationship in the first place? 

Some people will say that one life saved makes it worth it.  But surely there is more that can be done without encouraging women to start out their relationships on a basis of mistrust and suspicion?  And a police check is not a security net – in fact it creates a false sense of security, because reality is that many women never report domestic violence, many women stay in abusive relationships for years and do nothing, or leave, ensuring they get away and never take steps to report their abusers, thus leaving them free to go on to abuse other women, women whose police check may have shown them up to have no history.  But in fact no history doesn’t mean not violent, it just means no known history.

Those 88 women who were killed by their partners knew they were violent.  As a general rule there is a history of violence before someone kills their partner.  And yet those women will have stayed in those relationships for a time before either leaving and then being murdered (as often happens) or being murdered during the course of the relationship.

Perhaps rather than putting the onus on women to ensure that their partner doesn’t have a known history, we should be investing more in ensuring that women who find themselves in abusive relationships can get the support to leave before they potentially become a statistic.  Perhaps we need to encourage women to speak out if they are being abused so they can get the support to leave.  There is no shame in being a victim of abuse – the abuser is the one at fault, but by staying in such a relationship women can only continue to be victims.  More needs to be done to try to encourage women to leave before it’s too late.  

And if this law can have one positive outcome, perhaps it should be that if a woman feels that she ought to be doing a police check into the background of her potential new partner, perhaps that is a sign that she shouldn’t be embarking on the relationship in the first place.  If it feels wrong from the outset, to the extent you would consider speaking to the police about a potential past, then nothing positive can come of it

Monday, 4 February 2013

Have we lost the art of compassion?

Ordinarily I write here about events in the news which I have opinions on, however something I experienced yesterday has compelled me to share it here and to ask the question, have we lost all sense of compassion?  


Yesterday on a train from London Charing Cross a woman got on at Waterloo East, stood at the entrance to the carriage and began to speak.  Initially I thought she was some kind of religious evangelist about to speak the word of whichever religion she might represent, however after telling the carriage her name and saying that she meant no offense, she then proceeded to say that she was homeless, that she had nowhere to sleep tonight, and that she would be very grateful if people could spare any change they might have in order that she be able to be safe and warm tonight.  She said that the streets of London are no place for a woman to be sleeping, and please would people consider helping her out.


The previously quite noisy carriage was stunned into absolute silence, and no-one said a word as she shuffled through the carriage.  No-one gave her any money either.  As soon as she’d gone people resumed their conversations, all apart from a group of young girls behind me who started talking about how awkward that was etc. 


A few minutes later she came back through the carriage and got off the train at Lewisham.  I can only assume that she may have continued to get on trains, going from one stop to another and then ultimately back again, and who knows how far she had come or how far she would go.


But what surprised me most was the reaction I got when I posed the question on Facebook and twitter, “if a woman silenced the train carriage you were in then said that she was homeless and could people please give her money, what would you do?”  I had expected a few people to say that they would give money, or food, had expected some to say that they would ignore her and do nothing.  However the responses I got ranged from “I would wonder where she got the train fare from,” as the majority response, with one stating that “I would see the train manager and ask for her to be removed since she clearly won’t have paid to be on the train,” of about 25 replies only three would have given her anything, two would have given money and one said he would give her food.  One even stated that she would move to another carriage. 


I will be the first to hold my hands up and state that I wouldn’t likely give money to a homeless person, not necessarily because I think that beggars are fakes just wanting to make money, but because a lot of people on the streets have substance abuse issues and I would feel uncomfortable giving someone money in the knowledge it might go to fund an alcohol or drug habit. But there are many homeless charities out there and I would give to those, and am about to sponsor a friend who is going to go to Everest base camp in order to support such a homeless charity. 


But while I might not give to individuals, I do wonder how we have developed into a society who can display such open hostility towards someone who is clearly in a worse off position than they are. Hostility that would state they would move to a different train carriage to avoid being in the same space as that person, for instance. 


There is no way of knowing whether the woman on that train was genuinely homeless or not.  However given the response she received I don’t imagine that riding a train line on a Sunday afternoon asking for money is a very lucrative pursuit, therefore I can only conclude that she was indeed someone who is in a worse off position than the majority of people who would see fit to judge her, and is at least deserving of some compassion if not our cash. 


So how is it that so many people feel unable to even feel compassion for someone in a potentially vulnerable position?


Have we lost the art of compassion?