My daughter suffered two seizures the other night. One was shortly after midnight, the other a couple of hours later. Having been away on business the previous night, it was my turn to get up to comfort her, to check that the fits were not life-threatening and, afterwards, to settle her back to sleep. Five hours later the alarm went off and, as my teenage son stomped into the shower, I popped back into her bedroom to check that she was still asleep — and still alive.
This was a typical night in our house, and it was followed by a typical day of attempting to balance work and family while caring for a severely disabled child and engaging in a ceaseless battle with the bureaucracy of our public services. My wife endures a daily torrent of telephone calls and conversations with doctors, nurses, social workers, teachers and therapists, plus the whole allied panoply of respite carers and council staff.
This is the reality of life as the parent of a severely disabled child. It is a reality I entered 12 years ago with the birth of a child suffering complex epilepsy that has left her blind, unable to walk or talk and in need of 24-hour care. It has, inevitably, had an impact on my family, my friendships, my lifestyle — and on my politics. My perceptions have been challenged, my views changed.
It is a reality that David Cameron, the emerging favourite for the Tory leadership, entered nearly four years ago with the birth of his son Ivan. As I know from a series of conversations with him since then, it has had a similarly profound impact on his life and on his politics. It helps explain his evolution from that cut-out-and-keep young Thatcherite turk who stood in the shadow of Norman Lamont on Black Wednesday to a more complex, compassionate figure who has gained an understanding of the failures of our public services and of his party in the most brutal possible way.
He is aware of the dangers of being seen to use his son’s disabilities to further his political career. But to understand the man whom many believe could rejuvenate his floundering party, it is vital to appreciate the impact of this trauma. He may be comparatively untested politically, but he has survived a huge personal test which, given what takes place behind his front door, puts the daily ups and downs of politics — or journalism — in proper perspective. It is why those critics who dismiss him as a toff who has effortlessly risen without trace may be making a mistake; for once, the personal is deeply political.
We have both been thrust, unwillingly at first, into the world of the disabled, a land largely ignored by the rest of society. (If you doubt this, ask yourself when you last had dinner with a disabled person or what your true thoughts are when you see someone with severe disabilities.) We have come to learn, from bitter personal experience, the human consequences of the scandalous closure of special schools. We have had far too much first-hand experience of the shocking state of our National Health Service from too many desperate nights in accident and emergency and too many dreary days in decrepit waiting-rooms. We know the frustration of repeating over and over again the most basic details of our child’s condition to doctors and case workers who haven’t bothered to read their notes. We have seen the failings of our social services and the paucity of respite provision offered to carers. We have felt the helplessness when confronted by uncaring local bureaucrats who hold the keys to a better life for our families — and the immense gratitude to those who appreciate our travails. And we have come across the human cost of these failures by the state in destroyed families, mental health problems and alcoholism, all increasing the burdens on society.
This was not the world I envisaged that I would live in. My background was privileged, although my CV reads Ampleforth and Aberdeen rather than Eton and Oxford. In the weeks following the birth of our second child, we were on the high that follows childbirth. Life seemed pretty damn perfect. Six weeks later, and four days before Christmas (I can still remember every moment), a paediatrician was gently informing us that our daughter was ‘profoundly brain-damaged’. We were plunged into an abyss of despair. There was depression, grief for the child we thought we had and, slowly in my case, the gradual emergence of intense love and joy in the beautiful child we are fortunate to have — a process that Cameron spoke briefly and movingly about under questioning during a fringe meeting at the recent Tory conference.
Until my daughter’s birth, I shared the consensus that the National Health Service was a source of national pride. Not for long after. I have seen too much incompetence, too many horrors. Some were serious: the internationally renowned neurologist who measured our heads before declaring that my daughter — then suffering up to 30 fits a day — would just have a slightly lower IQ than normal; the GP who gave my daughter an injection despite a warning on her notes that it could prove fatal; the two-day struggle in A&E to get a vital brain scan carried out after she fractured her skull (doubly worrying for an epileptic). Then there are those smaller, but still significant, issues such as the overcrowded waiting-rooms, the dirty wards, the lack of anyone in charge, the number of agency staff, the patronising attitudes of some doctors, the blasé approach of some receptionists, the nurses who don’t greet your child.
I was quickly convinced that part of the problem was the lack of patient power in the face of a monopolistic service. It is so clearly not just about resources. Five years ago, even William Hague laughed off my views on the need to break up the health service as ludicrously right-wing, while senior Labour ministers dismissed them as covert privatisation — an absurd stance, given the level of my daughter’s needs. Today, the more astute politicians in all three major parties — including, increasingly, the Prime Minister — understand the scale of the problem and the need to empower patients. Indeed, one of the best-known Labour Cabinet ministers recently confided in me that he had come round to my views after witnessing the shocking mistreatment of an elderly relative.
Cameron, too, has seen his child suffer needlessly. And I know that he has reshaped his views during those long, lonely nights in emergency wards, chatting to staff and other patients. He remains, though, a ‘Fabian’, as one of his closest colleagues put it, believing in gradual change rather than the more drastic approach I would favour.
This is just one example. There are so many others which have forced us to confront the failure of our public services. Cameron raised the issue of special schools after the threatened closure of a centre attended by his son and, some years ago, my daughter. Having spent the past few months traipsing across the south of England trying to find a secondary-level school to educate and care for my daughter, I have witnessed the tragic legacy of the government’s obsession with inclusion that has seen nearly 100 of these centres of excellence closed since Tony Blair came to power. Inclusion is a fine aim, of course, but it has become an overriding dogma at a time when there is a rise in the number of babies born with multiple disabilities.
And I can still recall my shock when we first started looking for nurseries and schools, a search which told me so much about our society’s attitude to the disabled. One was in a hospital which institutionalised people almost from birth. Another was in a four-storey building without a lift, ensuring that all the children in wheelchairs were stranded on the ground floor and incapable of using many of the facilities. It is hard to describe my anger at raising these iss ues with ministers, only to hear ill-informed dogma in response.
Then there are social services. What good is it if your social worker seems to change once a year, as ours have on average? Some are terrific, some blinkered by political concerns, but all get ground down and spat out from this Cinderella service. Why does there need to be so much in-fighting between different government departments over funding which leaves parents caught in the middle trying to protect their child’s corner? Why is respite provision — which can make the difference between keeping a family together and a child being thrown into the state’s permanent care — so inadequate? Why do parents have to battle constantly to get basic things such as education and healthcare that are taken for granted by able-bodied people? And why do those people who devote their lives to helping the disabled — special needs teachers, residential carers, therapists and suchlike — have such lowly status and poor rewards?
Most of these issues have huge political dimensions, of course, and it is little wonder that while so many middle-class parents fight their way through the system, so many less fortunate families fall apart or end up with inadequate provision and care. Special needs provision is very expensive, which is the cause of much of the bickering — we have recently spent nearly £100,000 adapting our house, for example, while our daughter’s education costs taxpayers more than that each year. But as with the health service, it is not all about money (the increased public spending has made some noticeable difference, although much less than you might expect). I have been left, for example, highly sceptical about the current fad for ‘localism’ after some of my experiences. Are local officials really up to the challenge of having more control over our lives? David Cameron, meanwhile, feels passionate about the inadequacy of respite provision offered to carers and the jumble of bureaucracy and multiple assessments facing parents.
Like any other parent, I derive immense pleasure from my children. But life as the parent of a disabled child is a huge daily struggle — a struggle increased tenfold by the failures of the state and its dysfunctional bureaucracy. And these failures, towards some of the most dependent people in society, offer lessons for the whole nation. I may not share all of David Cameron’s views, but I know he understands these lessons better than most of his Westminster colleagues. He has gained an unwanted but unique insight into how our public services can be reformed and our government made more responsive to the needs of its citizens. In the end, this is a far more profound part of his political DNA than his old school tie or his antics in the Bullingdon Club.
Ian Birrell is deputy editor of the Independent.