Dominic Lawson: Disability: the political and the personal

Soon we will have both a Prime Minister and Opposition leader who are fathers of disabled children
Click to follow
The Independent Online

When the doctor told me that my daughter had Down syndrome my very first feeling was one of relief. The previous year we had lost a child who was born too young to survive. So when, after our next child was born, she was immediately whisked away by the nurses and I was asked to see the duty paediatrician, I was full of fear; that rose almost to panic when he cleared his throat and said: "I'm afraid there is a problem." You will now understand why I felt reassured when he went on: "I am certain that your daughter has Down syndrome." However confused by the sudden revelation of shocking news, I already knew enough to realise that my daughter's life was not in imminent danger.

It's impertinent to guess at the emotions which Gordon and Sarah Brown would have experienced when they were told their third child, Fraser, has cystic fibrosis; but I can't help thinking that they might have felt rather as I did when my younger daughter's genetic abnormality was diagnosed. They had lost their first child, Jennifer, after only 10 days of life. It is a terrible cliché, but there is no other way to say it: nothing can ever prepare you for the loss of a child. The pain diminishes, naturally; but it is never entirely absent.

Doctors have their differing bedside manners; but it seems to me quite likely that the one who first told the Browns about their third child's condition would have begun with a phrase like "There's something about Fraser that we need to discuss." This is not to fault the medical profession. It is very hard to break such difficult news without some irrelevant preamble, designed as much as anything else to steady the nerves of the bearer, but which serves only to heighten the terror of the recipient.

So I don't regard the upbeat statement released by the Browns about Fraser and their hopes for him as in any way delusional. After what they will have gone through with Jennifer, the prospects for their latest child will seem dazzlingly bright by comparison. While it is frightening to be told that your son will probably not live beyond early middle age, that seems almost like a blessing when you know the worst that can befall a baby.

It was not surprising that David Cameron suspended the insults he normally lobs in Gordon Brown's direction to say that he and his wife Samantha were "thinking of Gordon and Sarah and their family". The Camerons' four-year-old son, Ivan, has profound disabilities. Indeed, I suspect he has already lived longer than the doctors first predicted.

Yesterday morning, coincidentally, I was hosting a question-and-answer session with David Cameron. The event, sponsored by JP Morgan, was designed to raise money for Kids, a charity which provides practical help and respite care for disabled children and their families. Before answering questions from the audience, mostly of City businessmen and women, David Cameron spoke with what seemed to me extraordinary composure about the difficulties of caring for a Ivan, who, as he pointed out, endures "epileptic cluster fits" each of which can last for more than an hour.

David Cameron is sometimes accused of making political capital out of the fact that he has a handicapped child. I suspect some of the newspapers making that accusation are also the most insistent in pleading with the Tory leader to give them an exclusive interview on "My life with Ivan"; and it's worth stressing that the remarks he made yesterday were at a private gathering designed entirely to raise money for an organisation which has already given vital support to the Cameron family.

The more important point is that soon this country will be one in which both the Prime Minister and the Leader of the Opposition are the fathers of disabled children. It would be premature to envisage sudden and dramatic changes of policy as a result of this, but all families in a similar situation should feel pleased that whoever turns out to be occupying 10 Downing Street over the next few years will be someone who understands first-hand how the current system fails in so many ways to meet the needs of the most vulnerable children and their families.

At this stage, David Cameron is the more vividly aware of those needs, especially as Ivan can be given such education as will benefit him only within a "special school". As Mr Cameron pointed out at the fundraising for Kids, local authorities have closed more and more of these schools, out of a mixture of financial concerns and a misguided ideological belief that all children, however profoundly handicapped, should be integrated into the comprehensive system.

Our own handicapped daughter does go to a normal secondary school, and had a wonderful time at the local village primary, but she is lucky enough to be a very fluent reader - and also extremely gregarious. We did look at a special school, which had a large number of autistic children among its pupils. Many of them had the characteristic associated with autism of a great fear of anything unexpected or noisy. The atmosphere in this school was wonderfully calming and peaceful - which was clearly one of its overriding aims. One could only imagine how its pupils would have been traumatised by the deafening din and disorderliness of many a big comprehensive.

Yet the principal told me that a large majority of his pupils had been able to attend his school only because their parents had successfully taken the local authority to a tribunal. In other words, they had an exhausting battle to get their children into the only form of school appropriate to their needs. It is a rather extraordinary fact that the invention of the term "special needs" has been accompanied by official hostility to the only schools which cater specifically for those very needs.

The idea of a "special child" is never far from the surface of this debate. The term itself also alerts us - or should do - to the often forgotten children in all this: the brothers and sisters of the "special" children. Not long after our last daughter was born, I met a man who also had two little girls, one of whom was severely disabled. He told me his biggest concern was not that his disabled daughter would fail to get the love and attention that she needed, but that his other child might feel neglected in all the fuss.

This can apply outside the family environment, too. I am always slightly irritated when acquaintances ask only after my daughter with Down syndrome, as if she doesn't have a sister. I suspect Gordon and Sarah Brown will also become tired of people beginning conversations with them by asking "How's Fraser?", not bothering to show any interest in their elder son's well-being. But whatever happens in the future, I am certain that they will cope. That's what families do.