Terry Prone: Who is protecting the privacy of vulnerable people, or the dead?
Once Iris Murdoch was demented, and later dead, all bets were off: Her husband, John Bayley, achieved a saintly revenge for her infidelity to him when she was sentient.
A grimly unattractive trope occasionally utilised by the bereaved is claiming to be privy to what the dead one would have wanted, if the dead one wasn’t dead. Sometimes, in fairness, it’s not the bereaved who go this road, but sympathisers who firmly tell the bereaved person that the dead one would have wanted them to marry again, sell the house, or move to Dubai.
One way or the other, it’s bootless speculation articulated in the firm confidence that the dead one is not going to rise up and smite the live person alleging mysterious insight into their views — although approving of someone moving to Dubai clearly is not something any decent dead person would advise if they weren’t dead.
The key thing about this spurious certainty, attributed to the one who has gone and died, is that it provides permission for something the bereaved relative wants to do anyway.
Oddly, this doesn’t happen when the person is not dead but is suffering from dementia.
One doesn’t often hear spouses of someone with Alzheimer’s suggesting that if they were in the whole of their mental health, they would want their life partner to marry again, sell the house, or move to Dubai.
People seem to be more willing to attribute helpful views to the dead than to the demented, who knows why? Maybe the fear is that, in a moment of lucidity, the Alzheimer’s sufferer would make it abundantly clear that they’re not recommending a move to Dubai, selling the house, or their partner marrying again, whereas the silence of the dead is guaranteed unless Ouija boards are deployed.
This putting of words, ideas, and preferences into the mouths of the dead is handy enough, if somewhat self-serving, not to say seriously squalid. The person is dead. A goner. Nonexistent. Incapable, obviously, of words, but equally incapable of ideas and preferences. There’s a serious case for the dead one haunting the living one who claims the capacity to read the mind that has ceased to be and interpret it for their own advantage.
But what about the situation where the living spouse or partner discusses the dead or demented person in a way that damages public perception of them?
It would not happen, you may say. However, the reality is that it happens all the time with the full approval, if not stimulation, of mainstream media.
Let's take a recent example.
An English TV presenter whose husband was one of the rare people who, infected with covid-19 during the pandemic, not only suffered grievous illness and came close to death, but even when his survival was reasonably assured, was left with severe intellectual and physical disabilities.
Because he was reasonably well known in Britain before this disaster happened to him, because it was such an unusual pandemic story, because his wife was and is a public figure who made documentaries about their situation, the details of his suffering became public property.
People who had never met him learned about the failure of his organs, his loss of eight stone, his severe intellectual limitations. Learning about the difficulties of his case and of navigating the care system to achieve the best that could be achieved for him was clearly exhausting and agonising for his wife, who has suffered major health problems of her own.
It is understandable that she might find some solace, as a public personality, in telling their story. She, after all, is the one trying to keep their family functional, hold on to her career, manage the patient. It is a heroic story and a tragic one. It is a one-sided story, too, because the disabled husband is never going to have a recovery like the stories emerging from Lourdes, back in the more reverential day: Stories of crutches abandoned and hung up in their new redundancy at the grotto. Stories of the blind seeing, the deaf hearing.
None of that is going to happen to this man, felled three years ago by the virus which killed millions.
Short of a miracle, he will never recover, never walk again, never discuss the political ideas which were intellectual meat and drink to him in the past. The struggle of the medical teams will be to keep the depredations of disability at bay. No more, no less.
But imagine for a moment that he did recover his cognitive processes. Imagine that he could walk and talk and read. Imagine that he could go through the old magazines and find himself described as doubly incontinent, as generating seven or more plastic sacks of dirty laundry every day.
Imagine that.
Now, to imagine that is not to condemn his wife or any of the publications that have told this one-sided, demeaning story. That’s what public personalities do, and it’s what mainstream media does.
Park that exceptional case for a moment, and think about the more frequently-occurring cases where a spouse has more slowly developed dementia and the bizarre and discomfiting behaviours which frequently accompany dementia. The cases where the functional spouse talks of issues such as incontinence, rages, and peculiarities of behaviour including aggression on the part of the demented spouse.
The functional spouse gets praised for this public exposition on the basis that they are expanding public understanding of dementia and showing courage in the process. It’s a story without a villain, but it’s a story with a hell of a hero: The marvellous functional spouse supporting the shadow of what their partner once was.
If anyone were to suggest — as I do here today — that this sharing also amounts to an egregious invasion of privacy inflicted in the name of love and support on a spouse who is without power or agency, some readers of the might feel it was unfair to the surviving, caring spouse.
The revelations may indeed help others in similar situations negotiate the health system here or in Britain.
In addition, the revelations may provoke third parties to make kind comments online or in person to members of the family, and nobody’s going to begrudge such pressured families a few words of praise and approbation.
Few go as far, after all, as Iris Murdoch’s previously obscure husband, who not only gained himself world fame through his book about caring for the writer during her dementia, but also achieved a saintly revenge for her flagrant infidelity to him when she was sentient. Once she was demented, and later dead, all bets were off.
The privacy of the vulnerable, the demented, and the dead is unprotected by anybody. It’s difficult to imagine any vulnerability or dependency more total and more needful of privacy protection than severe brain damage or Alzheimer’s, but protection is there none.
The sad irony is that the people the vulnerable, the demented, and the dead often need privacy protection from are not strangers but those closest, those most trusted, those who once formally vowed loyalty in sickness and in health.
