Privacy — like the coronavirus — is a constantly shifting target

Privacy — like the coronavirus — is a constantly shifting target

The Nevermind album cover. File picture.

When you’re halfway through a story you believed was guaranteed to entertain and educate, and the other person in the room has clearly lost interest, the only thing to do is dribble to a halt, which was what I did when me and Cepta were having a socially distanced cup of coffee in my kitchen. 

She looked straight ahead and spoke out the side of her mouth, like someone who’s done time. “Don’t react,” she said. “Someone’s taking a photograph.” 

The direction of her gaze suggested the photographer was on the other side of the open window she was facing. I obeyed her orders and sat still. 

“Of us?” I asked. “Probably just of the house,” she said fair-mindedly. “Maybe of the clothesline.” 

The clothesline held one towel and one old bathmat, trailing threads lightly waving in the breeze. 

While I wouldn’t want to see a published picture of my sad washing, I also couldn’t figure anybody, on a sunny Indian summer morning, would have a life empty enough to dictate clothesline photography. 

Nor were they likely to be photographing us, despite my friend’s clear desire to climb under the kitchen island and hide there. Which meant they were taking pictures of My House. I said it out loud, complete with capitals. My House.

Picture: iStock
Picture: iStock

The nerve of them. It was, we agreed, a major invasion of privacy. Is nothing sacred any more? 

I should contact the privacy people and tell them that a perfect stranger on the cliff close to where I live was taking photographs of my residence without my permission. 

But then again, maybe not. I live in an old house which looks picturesque from a distance. (Up close, not so much.) And even if it was a squeaky clean modern house, what law would be broken by them photographing the exterior?

The point is that privacy is — like the coronavirus — a constantly shifting target. 

Measles would stand still to be shot and prevented, but the coronavirus morphs while you’re having your coffee, hence the need for booster shots. Privacy is the same. 

What seemed perfectly acceptable, not to say maybe even cute, a few decades back has turned into the data equivalent of the Delta variant.

Take the cover of the 1991 Nirvana LP. It showed a baby swimming underwater. That was a great time for pictures of babies swimming underwater. 

Paperback bestsellers were written about blowing in a baby’s face and dunking them in a pool or the sea, where they swam happily to the surface. 

The nameless babies on the front of those paperbacks must now be given furiously to think by the lawsuit taken by the Nirvana baby, whose name was Spencer Elden. 

Elden, now 30, wants monetary damages because the shot showed his penis, ergo — according to Elden — means it was child pornography.

Elden isn’t suing for financial exploitation or invasion of privacy or unsought fame, although it’s fair to predict that many lawsuits in future will come under the first two as a way of coping with the third. 

Many famous people, down the years, have used their kids in pictures as accessories, turning a central figure like Joan Crawford into a brand ambassador for loving motherhood.

The adoptive daughter who appeared in many of Crawford’s pictures at the end of the seventies wrote a memoir of an horrific childhood entitled Mommy Dearest

That memoir would suggest that the offence caused by the widely-promulgated photographs was minor, compared to the daughter’s wider suffering. 

But those photographs spoke to a continuing reality: that babies and children can soften a public image and give a new lease of life to a celebrity whose fame is waning. 

The children, for the most part, are thrilled to be photographed and to see themselves in a magazine or on Instagram. 

It’s only much later that some of them, possibly a minority of them, resent how they were used. 

They gave no permission for their parent or parents to share the images of their childhood, and even if those images are nothing like as invasive as those of baby Elden, even if nobody made any money out of the deal, the principle is the same. 

The principle being that their privacy was invaded for a purpose they could not comprehend at a time when they couldn’t make an informed judgement to accept or reject this invasion.

We now have laws about privacy and a state body, related to EU institutions, which actively intervenes to hammer home the rights and wrongs of data use. So we know for example, the dangers of being asked by your employer if you have been vaccinated.

And yet it can be argued that two groups of people — two of the most vulnerable groups of people in our society — have no protection over their personal data if those closest to them decide to use it, publicly.

What is in question is whether the demented person would have given permission for the details of their diminution to be disseminated to others, were they in a position to understand what was happening to them. 
What is in question is whether the demented person would have given permission for the details of their diminution to be disseminated to others, were they in a position to understand what was happening to them. 

One of those groups is children. The other is the demented elderly. In each case, the people most likely to invade their privacy and use their data publicly are family members. 

It has become a recurring trope of mainstream media to introduce as a hero the relative of someone suffering from dementia to discuss some aspect of their situation. 

Now, in some cases, implicit permission is in place — one recent memoir covered the dementia of a man who, himself, had gone public about his famous father’s dementia, and so it could be assumed that he would approve of his own condition being made public. 

But in the overwhelming majority of cases, no permission exists, implicit or explicit and nobody prevents intimate and frequently deleterious details of a demented individual’s behaviour being revealed by a relative.

It is as if dementia turns its sufferer into a chattel of the undemented person, demolishing the rights of the former. 

This is not to say that the undemented person means anything but good when they reveal details of their relative’s situation. 

That’s not in question. What is in question is whether the demented person would have given permission for the details of their diminution to be disseminated to others, were they in a position to understand what was happening to them. 

What is in question is why, when people think about “living wills,” they tend not to include a wish that their privacy not be invaded or their data published. It doesn’t occur to them. It should.

If history is written by the victors, accounts of dementia are written by the heroes: the wives, partners, daughters and sons of the demented person. 

The people who do the caring, and in many cases do wonderful caring.

However, even the best care should not provide permission to publish the details of someone’s aggression, confusion or incontinence in a way which inevitably makes the public think better of the carer and worse of the cared-for. 

Dementia is a tragedy. But to be publicly defined by the data of one’s diminution is a double tragedy.

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