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Home / Lifestyle

Deborah Hill Cone: What we can learn from Charlie Gard's tragic death

By Deborah Hill Cone
NZ Herald·
30 Jul, 2017 05:00 PM5 mins to read

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Charlie Gard's parents went to court many times to prevent Charlie's life-support being switched off.

Charlie Gard's parents went to court many times to prevent Charlie's life-support being switched off.

Opinion by Deborah Hill ConeLearn more

Most of Charlie's short life was spent attached to machinery that goes ping in London's Great Ormond Street Hospital. He was blind and deaf and could not breathe without a ventilator. His doctors said he should be allowed to die.

But his parents wanted to take him to America for an experimental treatment which they said would give him "a meaningful life", although it was pretty hard to work out how that was really going to happen.

Pope Francis, Donald Trump and two Republican congressmen sent right-to-life messages of support to Charlie's parents. The staff at the hospital received thousands of abusive messages including death threats.

Charlie's parents went to court many times, and lost. And at the weekend Charlie died.

Charlie's mother, Connie Yates, said: "Our beautiful little boy has gone. We are so proud of you Charlie."

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This is extremely sad. But suffering can be borne if it is given meaning. And maybe we can learn something from Charlie's death.

One commentator said the case showed that fighting for one's children is exactly what being a parent is all about. I'm not sure this is true. Don't child abusers often say they did it for the child's own good?

Maybe instead, we should be reminded that we don't own our children, that we could try harder to respect them as separate human beings. They are not an extension of ourselves. Sometimes it is hard to see this.

In some regards, we have made great progress: it is not okay to beat your children anymore. But in other ways, in certain circles, children have developed a somewhat creepy role as status signifiers. Sometimes we call it love, but it is more like a kind of bonkers narcissistic pursuit which puts great pressure on the precious petals to live up to their parents' expectations.

New York Times writer David Brooks says over the past few decades, upper-middle-class Americans have embraced behaviour codes that put cultivating successful children at the centre of life. As soon as they get money, they turn it into investments in their kids. It's probably true in New Zealand too, although fortunately not as brutal as those rabid Manhattanites coaching their toddlers to get into the "right" pre-school.

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As life has gotten worse for the rest in the middle class, upper-middle-class parents have become fanatical about making sure their children never sink back to those levels and Brooks says there is nothing wrong in devoting yourself to your progeny.

I disagree. I think it can be destructive and damaging for children to be colonised and controlled. It puts pressure on them to measure up to parents' expectations. Little Lord Fauntleroy, ugh.

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I never used to understand why it made me so antsy seeing modern parents getting in amongst it at the playground and trying to direct the way their children play. "No Tarquin! Saskia! That's not the way you do it!" Or taking over their child's science project, making them go to a fancy school or over-riding their choice of friends. Surely my scorn should be saved for parents who actually beat their children, rather than those who just want them to get a Rhodes Scholarship? Apparently not.

Chris Gard and Connie Yates with their son Charlie Gard.
Chris Gard and Connie Yates with their son Charlie Gard.

And it's not as if I've got it sussed.

Last week, someone kept asking my son, who is nine, something and I kept on butting in and answering on his behalf; I realised only later I was probably "mumsplaining". Poor kid.

It's okay. I think learning to respect our children's autonomy is a life-long lesson.

"The mother [or father or caregiver's] task is greater than just satisfying her baby's physical needs. She must also be able to leave her child alone." That was the warning from psychologist Donald Winnicott.

"This leaving alone does not mean ignoring, not does it necessarily mean physically or literally looking away. An infant after all has to be attended to almost constantly. Leaving alone means allowing a child to have her own experience whether alone or when feeding, bathing or being held.

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"When suspended in the matrix of the parent-child relationship the child is free to explore, to venture into new territory both within herself and without. The freedom to explore while held in the safety net of the parent's benign presence develops into the capacity to be alone."

Until we learn this, we are destined to keep projecting our own feelings on to our children, unconsciously, repeating the same patterns generation after generation.

It is sad that Charlie Gard died, although the court made the right decision, thinking about him, not his parents. But I hope by the time my children have kids we will be more aware of the dangers of putting parents on a pedestal (those words will come back to bite me, I know!) and start to respect that children have rights, too.

Child advocate Alice Miller said: "Wherever I look I see signs of a commandment to honour one's parents and nowhere a commandment that calls for the respect of a child."

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