Today I mourn with the parents of Charlie Gard. Who, along with whatever else they must have suffered in terms of fears and heartache for their son, had to duel the overreaching hand of the state interfering in their care plans for their poorly child. I can only try to imagine what that must be like. The thought makes me sick.
But I also am ashamed. I am a patriotic citizen in a country that I now learn denies healthcare to a sick child. In saying this I am keenly aware that I sound like your typical leftie-liberal decrying NHS cuts. Not so. Today this was not about cuts. The money was there! The parents had raised it, people had donated, there was no NHS funding needed, everything was ready to go. This time the only thing that prevented Charlie getting treatment was the iron hand of the state.
Previously a judge had determined that Charlie must die, his last chance for life and health in the USA untested. Since then the parents had appealed, after all treatment was available, paid for, ready, it was worth one last chance. In appealing it became clear that the original judgement became irrelevant for, in the time taken to appeal, had the judge ruled in favour of Charlie he could have been receiving treatment by now and the whole decision would be in the hands of the success or failure of the treatment. But during the appeal precious time was lost and in the end it was too late. The parents were forced to admit that in the delay Charlie had weakened too much and now even their last chance treatment in the USA was not possible – Charlie’s final light of hope extinguished by a state that got in the way of his treatment.
Part of what makes me so ashamed today is that some, who on any other day would be cursing Tories for not providing care… are not to be found supporting his last try for treatment. From them, today, there is no defence of this little boy, no cries of rage at the barriers placed between him and the care available in the USA, treatment his parents had organised and begged for. No, these people expressed no such moral outrage on this occasion.
It is not merely this lack of support that sickens me though, but rather what really wrenches the gut is their pious ‘we know better’ support of what the state has coerced onto this child and his parents. How dare they. And when you point out to them the vile interference into what ought to have been a family decision it is as if this idea of ‘family’ or ‘parental responsibility’ is a new concept to them. “Parents don’t own their kids” they say, and suggest that parents who claim responsibility for their children equate such with owning a dog. What outrageous, cold blooded disregard for the reality of genuine care and love between parent and child. I can only assume these people have no children of their own, or else rate somewhere high up the psychopathic spectrum for such computed unfeeling logic in this context. They have a narrative and are determined to paint the most caring parent as though children are no more than chattels to them. And while they misrepresent the parent-child relationship in their attempt to lever the sick child out of his mother’s arms these self-righteous know-it-alls clearly believe that while parents don’t own their children the state does own them – and all but applauds the wisdom of the state while jackboots grind the tears of the parents. In their mind the parents knew nothing about what was good for the child they clearly loved, and had no interest in what was best for him, only the state could be correct. For shame.
When the idea of state force is invoked by these people it is often addressed using the term “we”, as if every one of us is somehow equally consenting or equally culpable for whatever the state does. But this is a trick. The state is a group of individuals (just like you and me) who exercise force and claim to do it on our behalf, with our permission. But how can this be, when they do all kinds of things that we are not able to do? All kinds of things we have no right to do, and therefore could never have given permission for the state to do? Applying that to this situation, we have to imagine that it is each of us, individually, standing between these parents and their child forbidding them to seek one last treatment. We have no right. We know we have no right. And therefore we could not delegate that to the state, or give permission to the state, to stand in their way. It is overreach, but overreach so many people think is somehow noble through a blind faith in the goodness and rightness of the state. Their sickening self-righteous piety reminds me of C.S. Lewis’s observation of moral busybodies’ interference in our lives:
“Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live under robber barons than under omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience.”
Don’t we all know someone like that, who doesn’t stop at opinions, but actually forces their view on us, justifying their coercion in their firm belief that they are right.
But it is easy to get lost in opinions about what was the right decision for Charlie – clearly the parents believed one thing and the agents of the state thought another. The claim by the state is that they want to do what is best for the child, and it hardly needs saying that the parents also want what is best for Charlie. And so what is best? Surely, it is whatever Charlie would have chosen were he able to choose. And so the basis of the decision really is about who gets to determine what Charlie would choose. Arguments about suffering are irrelevant if Charlie would choose to endure a while longer to try a new treatment (not that any suffering was a certainty either, it was admitted that medics didn’t really know whether Charlie was suffering or not). As adults we put up with discomfort and pain all the time, given a chance to survive we endure in order to benefit, we hope. There are countless examples of this. Why should it be assumed that Charlie would choose anything different?
The state thinks the child would choose death. The parent believes the child would choose life. Now the state, pretending to act with the authority of all of us wants to overrule the parent. So the basis of the whole decision remains – who should determine what Charlie would choose were he able to choose?
If you, personally, would stand in that private place and supplant the parent’s sacred duty with your will and overrule them, then you might agree with the judge but must accept joint culpability for the decision. You went in where angels fear to tread, you forced your will on the outcome, you arrogantly usurped the parental responsibility. That is what state involvement and your support of it means in this case.
Otherwise leave it to the parents – clearly loving, devoted, wanting the best for their child. This is a parental decision not a state decision. There was a light of hope in the USA, and Charlie and his parents were forced to wait around for the state to give permission… Permission!? Recall, if you will, the case of Ashya King, who’s parents were accused of kidnapping (their own child) and a European arrest warrant issued to try to prevent them taking their child for a treatment in another country – a treatment which worked and saved the child’s life.
So I choose the latter. I supported going ahead with one more treatment. I don’t think that Charlie grown to maturity would choose death when one more treatment was available. But even so I don’t think it is my call – and for that reason it is not the state’s call either.
But while the state forces its call anyway, and while ‘moral busybodies’ pat themselves on the back for their support of tyranny, we are all at risk of being disposed of and our choices disregarded. So I state now, publicly, that I assign such a decision to my immediate family and do not give permission to the state to decide what I would choose. Why? Je suis Charlie – with such an overreaching state, we are all potentially Charlie.