Caring for our disabled daughter can be terrifying but she’s enriched our lives beyond measure

Published in the Daily Mail (October 5th, 2010)

My daughter swam by herself the other day. Well, when I say swam, she floated. But by herself, her long hair lying on the water like a pre-Raphaelite painting and a big goofy smile on her face. She bobbed up and down for a while, then turned on her back, all the time keeping her head above the water.

It was the first time she had done this without flotation aids — one of those lovely moments of personal triumph for a child that make being a parent so rewarding and magical. Like when my son walked for the first time, or wobbled down the road on his bike.

It was also unexpected, because just two years ago she was approaching death. But then, since the birth of our daughter 16 years ago, we have got used to the incredible ups and downs of life with a disabled child. Life is never simple, sometimes terrifying, but always intensely rewarding in its own weird way.

And our love for our daughter (who suffers from an obscure genetic mutation called CDKL5) is no less profound or life-affirming than our love for our son.

This is why it seems incredible that ­Virginia Ironside, who has spent her life advising others on how to cope with problems, should pile on the agony for the thousands of parents who cope daily with a disabled child.

Her grossly insensitive comments on BBC TV that she would personally murder a disabled or unwanted child — that to kill such children was ‘the act of a loving mother’ — would seem unbelievable if they did not reveal attitudes still so prevalent in our society.

She reveals herself to be not only foolish, but also to be a deeply unpleasant eugenicist. Her views would have been acceptable in ancient Greece, when the Spartans threw disabled children to their deaths as part of their quest for perfection.

Or more recently under the Nazis, when those with physical or mental imperfections were among the first to be rounded up and put to their deaths. But they should not be acceptable today.

Thankfully, few people share her desire to eliminate all those tens of thousands of children who are born each year with disabilities. But her view reveals a mindset that is all too common: that those with disabilities are inferior to the rest of us.

This is the attitude that leads to words such as ‘retard’ being bandied around by celebrities; this is the reason there is a rise in attacks on the disabled and this is why the police, schools and local authorities all too often do too little to protect the disabled from bullying and abuse. Sadly, it is an attitude I have seen all too often.

Imagine the outcry if Ms ­Ironside had said black ­children or gay teenagers should be exterminated. She would, rightly, never again be invited to ­display her stupidity on BBC television or to write her ­column for a ­liberal newspaper.

But when it comes to treating the disabled with such ­contempt, there are no restraints — even in parts of the media that otherwise claim to be leading the fight for equal rights. Indeed, I have heard one of Britain’s most prominent Left-wing newspaper columnists display breathtaking ­bigotry towards the disabled.

The harsh truth I have learned since being plunged into the world of disability is that so many of the hurdles that must be cleared are those placed in your way by the rest of society. It is not the disability that causes the biggest problems, it is the ignorance of other people.

Make no mistake, this is the real reason why Fiona Pilkington killed herself and her disabled daughter after years of abuse from neighbours and ­little help from the police.

This is why a girl I know in a wheelchair was, three years ago, contemplating suicide, such was the lack of ­support she received from her school and her local authority. Luckily she spoke out — and last month started at a top university.

These cases show how hard life can be for the disabled and their carers in our supposedly enlightened society. It is, of course, desperately tough ­caring for someone in need of permanent help, but it is other people who make the problems seem insurmountable.

It is those blinkered attitudes that start with a hostile stare, move on to a curse when a bus is delayed while a wheelchair-user gets onboard — and end with the hate-filled abuse of a thug or the unthinking scorn of a eugenicist.

I am ashamed to admit I thought little about such issues until the birth of our beautiful daughter. For me, like for so many, people with disabilities were out of sight and out of mind. But since her birth, I have learned so much and grown so much.

No one would pretend that it is ever easy as the parent of a child with multiple and ­profound learning difficulties who needs care round the clock.

Many parents endure months of depression after the birth or diagnosis, and I was not immune to this. Experts compare the process to mourning — you grieve for the loss of the child you thought you had.

But slowly you emerge from the darkness as you come to terms with the new shape of your world and take delight in a host of unexpected pleasures.

Our life is like a rollercoaster, never knowing what the day will bring. Four times we have had to prepare for her death; once, she lay on her bed, grey and in cold sweats, just hours from the expected end.

One day she is full of cheeky grins and smiles; the next she has terrible epileptic seizures. One night her room is filled with screams, the next with gentle snores.

And we know that for all the triumphs such as floating on her own in the pool or clasping her cup as she drinks, she will never walk, talk or eat by herself.

Despite all this, life seems so much richer. It may be hard to go on family holidays, or visit friends for the weekend, but fulfilment comes in many surprising guises. We live in the present, since who knows what tomorrow will bring.

Yet the daily vicissitudes of life seem so much less when you have been through some of the traumas that we have endured, while laughter and love turn up in the strangest places.

Our friendships with those who have stuck by us — or understand when we cancel at the last minute due to another emergency hospital visit — are so much deeper. We have dropped some old so-called friends, while gaining unexpected new ones. Some people have revealed generosity and kindness that I would never have guessed they had in them.

We have met so many people we might never have mixed with in our normal lives, not least the amazing carers from all over the world who do so much for so ­little, to say nothing of people with disabilities who humble us with what they overcome.

Even my political views have changed, for I have seen the underbelly of the State and the failings of our health and social services. I now have a far better understanding of how so often the Welfare State fails those most in need and of how bureaucracy and incompetence stifles the best of intentions.

And my views on abortion have altered. While I still just about defend the right to choose, I have difficulties with the concept of getting rid of unborn children with disabilities for obvious reasons.

Our lives have turned out strangely, but as John Lennon once said, life is what happens while you are busy making plans. At times, the survival instinct means we have to resort to the darkest humour in our situation. Yet life seems somehow to be that much more intense, to fizz that little more.

One of my closest friends lost his autistic daughter a couple of years back. Recently, he mentioned that he missed her so much not just for the loss of a child but for the crazy effervescence that, despite the difficulties, lit up the lives of his family. I knew exactly what he meant.

This man now gives up one of his days off each week to spend time working with disabled children. Perhaps Ms Ironside should do the same.

Then she would learn how much brighter the world is for all those disabled children that she would like to get rid of. She might even learn the real meaning of humanity.

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