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A case for dignity
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I'm reading
A case for dignity
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Pass it on
I'm reading
A case for dignity
Pass it on
Pass it on
Articles
13 December 2018

A case for dignity

Dignity is not necessarily a cardinal value, one that always trumps everything else. But it matters tremendously.

Written by Linda Barclay

Behind extraordinary ideas, there are extraordinary people. Dumbo Feather is a magazine about these people.

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Imagine a woman—let’s call her Mary—with advanced dementia. Mary is sometimes aggressive with her carers. She particularly resists their attempts to help her dress: Mary just hates to wear clothes. In the end, the carers decide to let her roam around the nursing home naked, clad only in a nappy.

Or imagine a young man called Steve, born with both profound cognitive impairments and physical disabilities. Food is one of Steve’s greatest pleasures and he particularly loves to feed himself, though he makes a great mess when he does so. His family decides to lay out newspaper and a bowl of food on the floor for his meals.

What’s wrong with these stories? Scouring mountains of philosophical theories of ethics won’t provide any answers. Steve and Mary aren’t harmed by the way they are treated. They get the outcomes they seem to seek and which make them happy. Their carers are motivated by love and kindness and are responsive to their joy and their distress.

Most people not burdened with a long philosophical education would simply say that Steve and Mary are not treated with dignity. The philosopher Ruth Macklin summed up the prevailing philosophical view in the British Medical Journal when she denounced dignity as a “useless concept.” If it isn’t just a faddish word for respect for autonomy or for rational persons, then it’s waffle. To be fair, there are reasons to be suspicious of appeals to dignity. It has long been the favoured manoeuvre of religious opponents of euthanasia, stem cell research, IVF, same-sex relationships and genetic manipulation. To most philosophers, it looks like the sort of thing you might appeal to when you’ve run out of good arguments.

But dignity is real, and its loss can be tragic. The term dignity can mean many things, but at its core it is about social equality. For better or worse, we are the kinds of creatures who care deeply about the regard that others have for us. We want to be esteemed, and, especially in modern times, to be recognised as an equal.

Our social esteem is acutely vulnerable in care facilities, even when other people are not the problem. Think of the cancer patient who has lost control of his bowels. We readily appreciate his humiliation. No matter how carefully others seek to reassure, he feels he cannot hold his head high, and meet others in the eye. His social standing is threatened. It is not uncommon for patients to place photos of their robust and healthier selves on their bedside tables. They are saying to hospital staff: that is really who I am—your equal—and don’t forget it.

The greatest threats to dignity come not from our own bodies, however. They come from others, with a thousand small cuts. It can be a tone of voice, evident impatience, rough handling, ignoring a cry of distress. When a carer at a nursing home talks to a resident in a sing-song voice, she is telling everyone in earshot that the resident is no more than a child. When a staff member handles a very frail resident roughly, when they laugh at her wails of distress, or scold her like they would a naughty puppy, we are left in no doubt that the resident has slipped dangerously down the social hierarchy.

In so many familiar ways we express our regard for each other’s social standing. We thank the shopkeeper when he hands over the change. We apologise to our colleagues when we keep them waiting. We respect our neighbour’s privacy and don’t ask him how much he earns. We unconsciously use elaborate social norms on a daily basis to signal that others count, that they are somebodies. And we expect the same in return. We are polite to our employers, but don’t want to kowtow. If others have inconvenienced us, we appreciate a token gesture of acknowledgment. A caste system where some are not permitted to touch their superiors, or share a meal with them, or even meet them in the eye, is repulsive to most of us. As the legal philosopher Jeremy Waldron says, we are all Brahmins now.

Except that we are not. Stigma is doggedly sticky. While much has been written about the stigmas of class, gender, race, religion and sexuality, enormous stigma also attaches to disability, frailty, and ageing. Even the experience of temporary illness can lead others to ignore social norms that shape exchanges among equals. Any patient repeatedly woken by nursing staff laughing loudly at 3.00am wonders, “Do I matter at all?” But the really egregious violations are usually reserved for the most stigmatised of all: those who are extremely frail, cognitively impaired and dependent on others for meeting basic needs. The distressing stories we are starting to hear about are only the tip of the iceberg.

People should always be held accountable for their cruel and often illegal conduct. But we stick our heads in the sand if we don’t recognise the pervasiveness of stigma around frailty and dependency. How many of us have declared that we cannot think of a fate any worse than to lose our robustness, our independence, and our marbles? Why is that? Losing control over one’s life is usually a bad thing, for sure. But this is not all that we fear. We also think our demented and dependent selves will have lost their social status, and no longer be worth all that much. We don’t want to end up at the bottom of the social pile.

How do we challenge such pervasive stigma? We can try to tackle it head on. Perhaps some advertising campaigns, some positive stereotyping? Here’s another suggestion, a kind of fake it ’til you make it approach. We do what we can to hold up the social standing of those who can no longer assert it themselves. We can resolve to speak to even the most cognitively-impaired person in the same tone of voice as we would use with any other adult. We can respect the privacy of someone who no longer cares about it by making sure the door is closed when we assist her to shower and toilet. We can help a person to maintain a clean and respectful appearance, and use the gentle and cautious touch that expresses respect.

These things can become habits of care. Eventually it might be normal to interact with dependent adults as social equals, and natural to perceive them as such: as dignified human beings whom we know to count as much as anyone else. In our small daily interactions, we can steadily chip away at stigma.

There can be real trade-offs here. Mary might suffer real anguish when she is dressed. Steve may miss out on some real joy in being made to eat at a table. Each situation can only be assessed by those who most care for people like Mary and Steve. Dignity is not necessarily a cardinal value, one that always trumps everything else. But it matters tremendously, and it is dangerous to ignore it. We treat people according to where we think they sit in the social hierarchy. Social inequality is dangerous, especially for the very dependent. Every day should be taken as an opportunity to challenge it.

Linda Barclay

Linda Barclay is a political philosopher in the Philosophy Department at Monash University. Her book, Disability with Dignity, was published in July 2018.

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