How my daughter disrupted my politics When your child is born profoundly disabled, it forces you to see everything differently

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.

When you meet other parents in the same situation, it is like being members of a secret club with shared experiences that everyone else struggles to comprehend. You soon learn the frustration of repeating endlessly the basic details of your child’s condition to medics and officials who have not bothered to glance at their notes after you have spent another night of screams, seizures and sleeping on the floor to protect your child.

You suffer the bewilderment of confronting the paucity of services, even school places, as you enter the underworld of disability in a society that seems not to care about such citizens. Social workers seem to change annually. Departments bicker over budgets. You rely on people who ignore emails and imply they know best. Then you fall off the cliff again when you move into adult services and are forced to start afresh. No wonder you cling desperately to those people who show humanity and real desire to help.

Many of the key problems are down to resources since it can be costly to support people with severe disabilities. The care system, for example, has fallen into such decay that it has become a national disgrace — yet note how debate focuses on middle-class families forced to sell homes to fund care for elderly relatives. It is simplistic to focus only on funding, however, when problems are attitudinal as well as systemic. It is about power, about politics, about people.

The biggest hurdle for families such as mine is not coping with dramatically changed life circumstances, although that is challenging, costly and relentless, but coping with a dysfunctional system and societal indifference. It is still hideous to watch my daughter have a seizure — and I have seen hundreds over the years. But with the right support, which we managed to win finally with health service and local authority backing, she has a good life.

So how did it change my politics? One legacy is deep scepticism towards the state and those proclaiming its brilliance, from the sacred health system through to that creaking care system. This leaves me annoyed when I hear weary platitudes about the wonders of the NHS, when for all its fiscal efficiencies it has poor outcomes on many key conditions as well as inadequate patient safety history, especially for some most in need such as people with learning disabilities.

Another consequence is despair over politics after seeing the complacency and incompetence of too many in power when confronted with problems that are devastating the lives of those who need help. My loathing for tribalism has intensified, along with my readiness to challenge charities that fail to serve the people they claim to help. I have always been contrary but my concerns over abuse of power, the arrogance of privilege and the platitudes that accompany contemporary politics have grown far stronger.

Yet I am no longer a libertarian. I have learned the crucial importance of the state, families and communities in assisting the most vulnerable citizens in society. This is why it was criminally irresponsible of the coalition government to overload austerity on local authorities, saving Whitehall some pain but storing up huge problems that have now exploded into slashed local services, school exclusions and lack of respite support.

This desire for stronger communities was why I admired the original idea of the Big Society, before it became entwined with simply cutting the public sector. It is why I despair over the toxicity of Brexit as it inflames divisions. And it is why I focus much of my domestic journalism on attempting to highlight social problems afflicting some of the most excluded and traumatised in society, from addicts through to refugees, prisoners, failed patients and people with disabilities.

The arrival of a child can change a human being: with that fusion of adoration and concern, they become instantly central to existence. When that child is different or profoundly disabled, you rapidly discover that you face a lonely and long fight for the basic things in life that most other parents take as normal. Just look at how many youngsters with autism are excluded from schools, how people with disabilities are excluded from the diversity debate, how many people with learning disabilities die through sheer indifference in hospitals. You worry over what will happen as you grow older or are no longer around.

My interest in politics has never waned, even in these tumultuous days when Westminster has been infected with such puerility and populism. Yet I have learned it is not a game, some kind of spectator sport — but a struggle of immense importance that can make the difference between survival and disaster, even sometimes life or death.

This piece was originally published on 15 Oct 2019

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Ian Birrell is an award-winning foreign reporter and columnist. He is also the founder, with Damon Albarn, of Africa Express.

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