There are those who have read about a little boy whose parents have sought desperately to keep him alive, those who have read of a little girl whose mum’s hope is that she may soon pass painlessly and with a dignity too easily denied.

Those of us who have lived with profoundly, heroically handicapped children have a tendency to keep quiet. There are things you don’t want to know. If, however, you are going to form an opinion, make a  comment, perhaps you should know. And after keeping pretty quiet for a quarter of a century, I’m setting out to try to deliver some truth.

Little Matters of Life and Death.

Think of the worst crime that you can imagine. Take some time about it – it needs to be a truly awful crime. Then think about what you would do to the perpetrator of that crime if you had the power.

How about this: you would lock them up, in solitary confinement, the only voices they would hear would be those of their guards and their guards would be chosen specifically because they did not speak the perpetrator’s language, so that whatever words our perpetrator heard would be completely unintelligible. He must also spend the rest of his life blindfold and have all his limbs pinioned so that he can do nothing whatever for himself.

Sometimes during his incarceration someone will come in, say something unintelligible to him and then either give him a hug, stroke his face or his hands, apply a hot iron, a sharp blade, a crushing weight or some other instrument of torture to some exposed part of his body. He is not to know why this is happening, or when, or for how long – once it begins – it will last. It is important that neither pleasure nor pain make any sense.

He must live in a world of total silence, save for those occasional meaningless voices, and must not be allowed to read, to listen to music or anything vaguely resembling music, nor to watch TV. Neither is our perpetrator allowed to taste food. A tube is inserted into his body so that the food is transmitted directly, without taste or texture.

The sentence, by the way, is for the rest of the perpetrator’s natural life. There is no escape until death.

Barbaric, is it not? For what crime would you punish someone in such a way? But there are people who ‘live’ like this. They are the profoundly, heroically handicapped, who have committed no crime at all.

Like our putative prisoner, they may smile, occasionally, if they come to associate a particular voice with a consequent pleasure, the little petting, the hug, but they do not know what these things mean.

They do not have language. They have no words for what they feel or for what they fear, for what they enjoy or for what they suffer. They have only incomprehension. They ‘live’. They breathe, they receive food, urinate, defecate, they have some sense of physical comfort, a frightening sense of physical discomfort – frightening because they do not understand where it comes from, what is happening, whether it will end or go on forever.

How do I know this? Because this was my daughter’s life for the four and a half years of her existence.

Is it possible to explain how deeply, or even why, I loved my little girl so much? Perhaps not.

There is, of course, something awesome in seeing a child born, in holding him or her in your arms, knowing she is yours. You know that she is and always will be a part of you (at least, this is true in most cases, but there are, of course, parents who are not loving parents, much as we would like to think otherwise).

There is no feeling in the world like holding your own child to your breast, seeing those preposterously tiny manifestations of his or her humanity – genitals, eyelashes, fingers and fingernails, toes – and carrying in part of your brain the story that is just beginning and which, in normal circumstances, will be part of your life forever.

That story is based on expectation and a rather casual faith that – for you – things will happen as they have happened for the vast majority; seeing first steps, hearing first vocalisation, first words, seeing first smiles, hearing first laughter, hearing a voice develop from that of the child to that of an adult, experiencing the everyday and ordinary with that child, taking them to nursery and to school, answering their persistent questions, helping them choose their educational and ethical/moral pathways, sharing birthdays and feast days, holidays, sharing jokes, choosing birthday and Christmas gifts and cards, collecting the photographs and memories that one day you will cherish as your child moves on to the life of their own with others of their own choosing. Prom. Graduation. Marriage. Occasional heartaches through which both of you grow.

But for some of us that story cannot be told.

Jenny would never take first steps. Indeed, Jenny would never have the capacity to so much as roll her body over or begin to crawl. She would never sit up, except when the specialists designed a padded, hinged steel frame that could hold her in that position. Nor did that sitting position mean anything to her. Almost nothing meant anything to her.

She did not – could not – reach out and/or grasp. Blind, she saw nothing, understood nothing, to grasp at. She comprehended neither the sound of toys or devices nor their textures, would flinch at the gentlest, most loving touch to her face.

She could never walk, would never walk, never talk, never run. She laughed once, in early days, but that lasted just the one occasion, and when tears came to her eyes or she vocalized they were rarely anything but the expression of uncomprehending pain.

There was this, and you should perhaps ask yourself what it means that this is among the best memories; the damage to her brain was such that immediately after an episode of pain came to an end – the very instant, that is, that it came to an end – she appeared to forget all about it. She showed no sign of living in dread.

Best memory of all? She knew when she was in her daddy’s arms and would giggle and chuckle often when he bounced her in them.

But that is a small memory made huge by its disparity from the norm. Sitting by her bed on any one of her many stays in hospital and seeing in her no sign of recognition that we were there? That is a bigger memory, and a painful one.

“It’s all going to be alright, my darling. Mummy and daddy love you and will do everything they can to make you happy.” When those words are meaningless to the one who is intended to receive them, when you cannot tell them that the pain they are experiencing will pass, that becomes a big memory and a painful one.

It is not going to be alright. Ever.

You cannot kiss this better. You cannot love this better. And the knowledge that this is so tears you up inside such that you will feel the pain within you even decades later.

In spite of everything you do as a parent, this child will suffer. That you will suffer is a given, but it does not – to most of us – matter. What does matter is the sentence that such a child is serving and the question as to whether, when that suffering is at its worst, it would be the most human and humane action to allow that suffering to end. Even to enable it to end.

Even as a I write this, my mind baulks at it. I cannot crush an invasive ant or swat a fly without some sense of remorse. I believe, however, that we have to think about it, to face with courage one of the most difficult concepts there is to face.

Nor is the ‘sentence’ I described earlier the whole of the picture. To paint that whole picture would probably require a book, because it would require me to detail the myriad ways in which we and our society fail handicapped and profoundly handicapped children and their families.

We humans are not as virtuous, not as highly-developed, as highly-evolved or as compassionate as we like to imagine ourselves to be. At some time, we will have to face up to that reality. It will hurt, but it seems to me unfair that we should seek to avoid that hurt when our doing so continues, ferociously, to hurt so many of our children and their carers.

Copyright

Richard M Thompson

25 July 2017