We need to talk about Ivan

I beg your indulgence. Resist the urge to take the understandable, but impetuous, position that a dead child should not be the subject of conversation in any context. Hear me out.

Ivan Reginald Ian was born in April 2002. He was diagnosed with Ohtahara Syndrome – a rare and debilitating combination of cerebral palsy and epilepsy. After an all-too-brief life, he died at St Mary’s in Paddington in 2009. Ivan was six. He was also the son of the soon-to-be Prime Minister, David Cameron.

I remember vividly the first time I felt an uncomfortable knot in my stomach about Ivan. I was thumbing through a copy of the Guardian and came across an article in which Cameron explained how his experience with Ivan had given him a passion and love for the NHS and the professionals within it. It was accompanied by this picture:

And then, a few days later, something began to gnaw at my insides, like a carrion beetle, when I saw this picture in another paper:

A few days later, in another publication this:

Then this:

Something highly unnatural about the poses, about the way Ivan is turned towards the camera, as is his father… Something about the different shots – the protagonists are wearing the same outfits, are similarly framed, but some are indoors and some outdoors. Everything had the feel of a “photo opportunity” – not a family portrait.

I tried to be open to friends who asked “would you rather they hid the child away in shame?”. But there was something interesting about both the timing and tone of this – pitched like a curiosity tent in the middle of an election circus. What about the other side in that election?

I am no fan of Gordon Brown, but credit ought to go where it is due. The man is partly blind, he and his wife lost a child only days after she was born, then had another diagnosed with cystic fibrosis. There was no denial; no attempt to hide away the facts; no shame. But there was also no feeding the media in order to boost likeability – and, heaven knows, Brown needed it. There was stoicism. There was dignity.

I tried to dismiss my extreme discomfort with the way Ivan was being used, at least in my subjective judgement. I tried to convince myself that this was my own cynicism talking; my political dislike of conservatism; my shameful, selfish awkwardness and guilt at being confronted with disability.

Unfortunately the pattern continued, even after his death. There were photographs from the funeral, which did not appear “papped”. There were pictures at assorted memorials, taken by the Camerons’ official photographer, engineered to engender sympathy or even pity. There were visits to hospices sponsored by OK! Magazine.

Last week David Cameron referred to baby Ivan during Prime Minister’s Questions again. It was the sixth or seventh time he has done so, either obliquely or directly, in response to difficult questions about the NHS or welfare or disability benefits. Occasionally Cameron is baited into it. He must rise above such occasions. Occasionally, however, the mention is defensive and entirely unprompted.

In last week’s PMQs Cameron was asked by Dame Joan Ruddock about cutting the benefits to one of her constituents – a 10-year-old girl with cerebral palsy. In his response he denied that the benefits available to disabled children were being cut (a distinct untruth with regard to new claimants as explained in this factcheck) and continued: “As someone who has actually filled out the form for disability allowance and had a child with cerebral palsy, I know how long it takes to fill in that form.”

No reference to the girl about whom the question was; no offer to look into her case; no attempt to answer the question. Only an out-of-context reference to Cameron’s dead child, offered as irrefutable proof that his reforms must be right and implied rebuke for daring to question them.

We always complain that our politicians are out of touch. What is the objection about a Prime Minister using his personal experience to help shape policy? No objection. But policy consists of words put into action. When the action is distinctly contrary to the words, it is not policy. It is hypocrisy.

He has presided over an unprecedented, concerted campaign against the NHS. So much so, that the very unit in which his child died is threatened with closure. To do this while citing his personal experiences to silence his critics, is unspeakably wicked.

To stand there, at the dispatch box, and invoke his plight as the parent of a disabled child, then minutes later announce the closure of 36 Remploy factories (not via a statement by the relevant minister, but by placing a letter in the library) is utterly cowardly.

The net result? A conversation about Ivan in which nobody dares speak up for Ivan. A muted debate, in which the interests of children like him are not fully represented in our Parliament.

I have every sympathy for David Cameron as a parent. I also have a right to demand the highest standards of him as a Prime Minister. The two concepts are not incompatible. It should not be taboo to say so.

Each time, the spectre of that poor child is raised like an invincible shield by his own father, each time his memory is drop-kicked into a political minefield – knowing that nobody will dare touch it – debate is silenced and legitimate questions about these reforms go unanswered.

It is not only inappropriate. It is distasteful and immoral.