Upbeat. For such a little word, it delivers a hefty punch. Gordon and Sarah Brown, we learnt last week from their friends, have remained upbeat since discovering their baby son Fraser has been diagnosed with cystic fibrosis, a chronic, incurable condition.
Upbeat follows in the wake of shocking news: it allows a necessary but short time to assimilate the facts about a particular medical condition, to weigh the enormity of that information against the love felt for the child, to determine that the child will have the best possible life it can whatever the odds, to accept the sincere support of family, friends and colleagues who want to believe that the changes in your life aren’t really radical, aren’t that far from “ normal”. Yes, upbeat allows all that.
Then it leaves you terribly alone.
Because upbeat also becomes the face you present to the world when asked, “How’s he doing?” (“Yeah, great thanks.”) Upbeat is what you show to the doctors whose job it is to prepare you for the fact that your child may not be running around with his or her siblings on the beach in the summer or snogging a new girlfriend or boyfriend as a teenager or having a family of their own one day.
Upbeat is what you show frustrated teachers (should your child be able to attend school) who can see their potential but can’t make them learn and who turn to you for the answer, when you can’t give it. Upbeat is what as a parent you have to show to your child’s siblings, so they’re not too frightened by what is happening to their brother or sister.
In this insidious way, wearing a cheery smile, upbeat beats you up and drags you to the ground.
It becomes the ultimate betrayal of the estimated 1.9m families in Britain whose children have some kind of special educational need, who play down the load they are carrying and rarely tell it how it is. Why? Because to say, “Well, he’s doing well on the medication but we were up all night because he couldn’t breathe. And we’re worried because his sister is being bullied at school because he’s different. And we’re running short of money because one of us needs to be at home in case there’s an emergency during the day” is not what people want to hear.
I have a day job and four fantastic children — one of whom at the age of 10 was walking to school when, out of the blue, his heart stopped. For 30 minutes. I won’t go into why this happened or how he survived. Or the operations and crises that have followed since. Or the impact on each member of our family.
While I’ve been writing this he’s been calling me to say he hasn’t got enough money to get from the station home. He tires easily. It’s a long way to walk and there’s a hill. How’s he doing? Yeah, great thanks. And he is. To receive such a call from him is like being granted a parallel life: most don’t survive his experience and yet he’s here. Whatever his difficulties, he’s out there, on a train with his mates coming back from school.
But see how paralysing my upbeatness is. I don’t admit to colleagues that I’m worried or that I need to get back. I rarely ask for help. I don’t tell you or them the full story. Our trips to children’s wards and Great Ormond Street hospital have demonstrated how comparatively uncomplicated his problems are.
To hint at the daily, gruelling realities of looking after a disabled child is to risk — especially if you move in healthy, wealthy circles — being boring, to sound as though you’re not coping, to awaken in your listener the worrying prospect that the gap between their lives and yours is so vast that you and your family have become something alien and other and, among your colleagues, the suggestion you might not be up to the job.
And that’s why those nearly 2m children and their families — from the most profoundly disabled to those who need some extra help in class — represent an enormous and largely voiceless constituency.
As cases of autism and Asperger’s syndrome continue to rise, we can expect the constituency to become bigger. Medical advances mean that children who would once have died have an increased chance of survival, and the number of disabled children under 16 in the UK went up by 62% between 1975 and 2002.
The Office for National Statistics has admitted the true number of severely disabled children has been under-reported. Most mothers of disabled children don’t go out to work and many of these families are in debt. In a society driven by progress and achievement, by targets and goal-setting, by the pursuit of perfection, the reality of living with struggle and, dare we mutter the F word, failure, is largely played off stage.
What happens when families do ask for help? Clare McCarthy, a 41-year-old from Oxfordshire, said it all when interviewed in The Sunday Times Magazine recently: “How stupid I was when I had this disabled child. I thought, if I need help, it’ll be there. But they didn’t tell you that you’ll have to fight for every minute of it.” She’s a reasonable woman and it was a shock for her to discover, when her son Matthew was diagnosed with a rare chromosomal condition, just how hard it would be. Now he’s 14, she’s trying to sort out his future schooling when her county has no sixth-form provision for children with disabilities.
Like Clare, most parents of disabled children will have to battle with their local authorities to acquire something called a statement of special educational needs. This document, in theory, entitles children to specified medical and educational services.
“Statements” are like gold dust: without them, entitlement is uncertain. And even with them the services that may be required, from occupational therapy through to speech therapy, from assistance in class to an appropriate school, are largely underfunded, and provision is patchy, sometimes non-existent.
Unseemly arguments open up as health authorities and education authorities both claim the other should be providing the services.
The gap between need and what is available is enormous. Only 17% of school-age children with difficulties have a statement and every year thousands of parents fight local authorities at tribunal over their entitlement.
David Congdon, head of campaigns and policy for the mental health charity Mencap, recently gave evidence to the Commons education and skills committee on this process: “LEAs (local education authorities) place all kinds of bureaucratic obstacles in the way in order to avoid having to fund the special educational needs of a child, even when they know they are going to lose at tribunal.
“While they are delaying, they are not paying for the placement or therapies. Parents find they need to fund educational psychologists, solicitors and others to represent them at tribunal at enormous expense. And the costs for LEAs are also high. But it’s still worth their while to play this game in the hope that many parents will simply give up.”
Yes, there are schools for disabled children. But fewer of them these days. Yes, special education units within mainstream schools can be very successful at integrating the disabled. But do we really believe that? It seems hard enough to get a normal child through to five GCSEs at grade C level. Special educational needs teachers are battling within this chaotic system as much as the parents. An Audit Commission report on LEAs in England and Wales found that children with special needs account for the majority of permanent exclusions from school.
Recently Mencap surveyed 200 local authorities and concluded that most were not planning properly to meet the needs of disabled children and their families. They discovered that only 6% of them were receiving any support from children’s services.
Gordon and Sarah Brown have witnessed absurdity and injustice in both life and politics and may well have already developed a black sense of humour. If so, it will serve them well for what is to come.
On learning of my son’s heart condition following his collapse, one mother in the playground asked me: “Have you been feeding him too many hamburgers?” She wanted to believe there was a tangible explanation for his condition; that we may have contributed, that this couldn’t happen to her family. A friend with a depressed autistic son has grown weary of the cheery “What’s his special gift then?” but found her own black humour triggered by one woman who inquired whether she would assist his suicide. Would that woman have helped her own child to die?
A review of support for disabled children was announced in Gordon Brown’s last budget that should feed into the comprehensive spending review in 2007, but what funds will be made available for what purposes is still unclear.
David Cameron, whose son Ivan needs constant care for his complex medical needs, became a symbol of hope for the families of disabled children, though we are still unclear how, if elected to run the country, he would help. In the meantime, families of disabled children experience some of the highest divorce rates and levels of poverty in the UK.
Death, pain and disability are unwelcome visitors. All three can offer transcendence in some form but what does that mean when so many of us would rather avoid their harsh realities and instead look to science to deliver the answers to all our problems? A spokesman for Gordon and Sarah Brown said last week that the couple were “very optimistic that the advances being made in medicine will help [their son] and many others”. And so they will. But not for everyone or for every illness in our lifetimes or in our children’s lifetimes. Perhaps not ever.
Like the rest of us, recent governments haven’t wanted to look disability in the face. Somehow that no longer seems possible. Disability is now living in the lives of two men who want to shape the future of this country and who, despite their wealth and influence, won’t be shielded from the pain of that experience. Between them can they ensure the disabled receive the medical assistance and education they deserve? Let’s hope so.
And me? I’m angry. Fraser Brown, Ivan Cameron, even Honey and Billy Mitchell’s Down’s syndrome baby on EastEnders, all deserve more. Upbeat just doesn’t cut it any more.
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You can also read India Knight’s blog about having a child with special needs, Isn’t She Talking Yet?
