I was one of those strange kids who was always interested in politics, almost as a spectator sport, learning the names of prime ministers alongside those of great footballers. When I went to university, I wandered around the freshers’ fair several times debating which party to join before plumping for the Conservatives. This was largely down to inate contrariness rather than any sense of ideology beyond an instinctive liberalism. One year later I was president. Then I went to a Federation of Conservative Students conference, witnessed overt racism and pulled my branch out of the organisation to the fury of the Party chairman.
That was my brief foray into tribal politics before I became an informal adviser to David Cameron as he tried to modernise the Tory party and later, briefly, his speechwriter. Like many young people exploring politics, my views evolved with maturity from a mushy dislike of Thatcherism’s toughest edges through to fierce libertarianism. But as Edwina Currie said in one of my favourite quotes: everyone is a libertarian until they have children.
Certainly this was true for me. I remain a liberal, opposed to overbearing control of individuals or the economy. But now I understand the powerful need for community and state to bind together society.
For when your child is born profoundly disabled, it changes everything in your life — including your politics. My life was comfortable and smooth until the birth of my daughter 26 years ago. I went into national newspaper journalism after private school, university and a local paper in the West Midlands. My wife had a thriving career. But all that was shattered with the arrival of our second child. Seizures started wracking her tiny body a few weeks after birth. We soon discovered she was visually impaired and would never walk or talk, although complex epilepsy — a horrible condition — remains the core difficulty. A decade ago, we gained a label for her problems, with diagnosis of a newly-discovered genetic condition called CDKL5.
The impact of such a revelation is like a terrible crash. Your life is derailed, your plans wrecked, your dreams dissolve. I went through depression, which later I learned was a form of grieving for the child I had thought I was going to have, before slow acceptance of the gorgeous daughter who really had arrived. Yet even as you emerge from this darkness, you are buffeted by the awful battles that you find to your horror accompany such trauma. You are confronted by a system that is supposed to support parents but instead simply adds to the anguish, the confusion and the exhaustion as you try to navigate a bureaucratic maze you had no desire to enter. Meanwhile you attempt to hold together your family, your friendships, your career. It is no surprise many crumble under such pressure.
This was my political awakening: a profound and highly personal insight into the failings of the state while also witnessing its importance in supporting citizens in crisis. I have seen first-hand — and later as a journalist — that behind the hollow worship of the National Health Service lies an often inadequate system that fails many of those most in need. This is seen again with recent shocking revelations of how the NHS locks up hundreds of people with autism and learning disabilities in abusive detention. Many staff are brilliant; one palliative care team held us afloat at a desperate time. Others can be arrogant, blasé and breathtakingly patronising towards parents and patients. Not all doctors and nurses are saints.
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