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Comment
Death & life
4 min read

A covering of feathers for the terrors of the night

How to struggle with the burden of other people's suffering.
a pile of feathers.
Evie S. on Unsplash.

It’s one of the sad facts of life: that many of us at some point will see our parents get old and fade away. Sigh. It doesn’t matter how well prepared you are or how much you’ve thought about it before hand, the reality of a fragile mum or an exhausted dad can break your heart.  

I’ve talked to my parents about this for years here and there. We’ve done lots of joking about seeing them off with a pink pill in the sherry, or ‘it’ll be a pillow for you Pa, if you’re too annoying’ – type thing. But when they left after Sunday lunch a couple of weeks ago, I had to clutch my husband. He lost his own mother last year… we’re still fluttering around the gap she’s left in our family. And now there’s my beloved olds too, looking diminished and moth eaten and moving at crepuscular speed. Ask Dad how he is these days, and he says ‘Old, dear’, and won’t elaborate further. 

I can cope with this when it’s in short bursts. Visiting them for lunch or taking them out on a trip is OK and manageable, and there is still joy in family occasions. Mum’s birthday was full of love, even though she took all afternoon to open her cards and became hopelessly confused about who’d given her what.  

But staying with them… that’s hard. Seeing the dust thick over the spare room; worrying about just how long that bowl of leftovers has been in the fridge. I whip about as unobtrusively as I can, scrubbing the bottom of the washing up bowl or putting their jerseys in a wash. I don’t want to be annoying – they won’t accept help and I’m not going to push – but it makes me sad. In particular I hate that my mum is in constant pain from crumbling bones, and that dementia has stolen her mind. Also, that as a consequence, Dad is irritable with her; he who has always adored her so much. 

I could picture them vividly, the feathers, soft and heavy and beautifully patterned like an owl’s, and imagine I was peering out through them at Mum’s pain. 

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Since childhood, I have struggled with the burden of other people’s suffering. I sometimes wonder if I’m exaggerating when I think about how much I mind, but I don’t think I am. I can only manage if I’m really ready for it. With my counselling clients that takes the form of very firm boundaries, regular supervision, colleagues to talk to etc… but with family it’s much harder. It’s just your own naked, soft-bodied self-shrinking from all the nettles and thorns – like a hermit crab without a shell.  

So when I went down to Mum and Dad’s this time, I felt the need to prepare. ‘Put on the armour of light,’ St Paul says, which sounds just the thing. I hardly slept last time, tossing and wriggling through small-hour horrors with my neck hurting and a feeling of tears not being far away. What to arm myself with though? 

The answer came in the form of an ancient poem - Psalm 91. I was listening to a Premier Radio presenter who is a pastor – a big, tattooed fellow with rings in his nose and lip – and he said it was his main defence when his wife was diagnosed with cancer. So, I looked it up, and I loved it. It was all about how the Lord will cover you with his wings and keep you safe from the terrors that visit in the night and the pestilence that stalks by day, or words to that effect.  

Malcolm Guite (a poet and priest whose writing I love) says you have to treat Psalm 91 with care: it was the one Satan tempted Christ within the wilderness, challenging him to throw himself from the temple roof and God would send his angels to catch him (as it says in the psalm). It’s not to be taken literally, this psalm: you can’t deliberately put yourself in harm’s way and expect to be immune because you’re a Christian, like some of the vehement anti-vaxxers around the world who think faith alone will protect them from lethal diseases. But the message is that if you put your trust in God, he won’t let you be damaged in any important or lasting way by the evils of the world. 

I memorised as much of it as I could. And then when I woke in the night – inevitably – with the dread hovering over me, I kept thinking, ‘The Lord will cover thee with his feathers’. I could picture them vividly, the feathers, soft and heavy and beautifully patterned like an owl’s, and imagine I was peering out through them at Mum’s pain and muddliness and Dad’s frustration and my own fear. They were like malevolent ghosts drifting through the dark, menacing and cruel. But Mum and Dad and I, our actual selves, were curled up safely, warm and hidden with the great wings over us.  

And eventually, I was able to go back to sleep. 

Article
Assisted dying
Death & life
4 min read

Behind the data: the social messages physician assisted suicide sends

If intense suffering caused by society drives autistic people to seek assisted death, then society has failed. Henna Cundill seeks the stories behind the data about such deaths.
A hand rest gently on another outstretched hand.
Alexander Grey on Unsplash.

Statistically speaking, autistic people are far more likely to die by suicide than non-autistic people. They are also, statistically speaking, far more likely to die by physician assisted suicide than non-autistic people, in countries where this is allowed.  

For example, in a study of 927 people who sought physician assisted suicide in the Netherlands (where this is legal) 39 of them were autistic. That’s about 4 per cent, but the prevalence of diagnosed autism in the Netherlands is only 1-2 per cent. The researchers go on to note that 21 per cent of these 39 people cite autism or intellectual disability as the “sole cause of suffering” that had prompted them to request assistance to die.  

I don’t like speaking statistically. For a start, 21 per cent of 39 people is 8.19 people, which raises obvious questions. A little digging reveals that what the researchers mean really is eight people. Eight people with eight unique stories that include an account of autistic suffering so intense that they asked for help to end their lives.  

But we do not have those stories, not really. Included in the report are carefully anonymised excerpts from the physicians’ notes, and this is the nearest that we can get.  

‘The patient suffered from his inability to participate in society [ … ] [He] was not able to live among people, because he was easily overstimulated. This made him isolated’ (2019 (22), male, 70s, ASD) 

‘The patient had felt unhappy since childhood and was persistently bullied because he was just a bit different from others [ … ] [He] longed for social contacts but was unable to connect with others. This reinforced his sense of loneliness. The consequences of his autism were unbearable for him [ … ] The prospect of having to live on in this way for years was an abomination to him and he could not bear it’ (2021 (26), male, 20s, ASD) 

The debate about legalising physician assisted suicide in the UK is ongoing, and the British Medical Association have provided a helpful guidance document which sets out the main arguments, both for and against, without making a recommendation either way. In the document, they observe that the reasons people ask for assisted suicide are predominantly personal and social, not clinical, and also that “laws send social messages.” I agree that laws do that, and I also think that those seeking assisted suicide send social messages too.  

For example, even just from these two tiny excerpts, I hear that a life worth living is one where people can participate in society and have social contacts, even if they are a “just a bit different from others.” It would be good to hear more. It would be good to sit down over a cup of coffee with each of these two men and ask them all my questions about their lived wisdom when it comes to autism.  

I could ask “2019 (22), male, 70s, ASD”: 

What causes the overstimulation - are there places where you don’t feel that?  

Can we create more such places for autistic people to socialise?  

And I could ask “2021 (26), male, 20s, ASD”:  

What makes you feel different?  

What kind of social contacts and connections do you think that you are looking for?  

But of course, I can’t do that, because these two men have been assisted to die.   

The word ‘welcome’ is striking to me here. What does it mean to welcome someone, not to merely include or tolerate, but to really welcome someone. 

When approached for comment, autistic theologian Claire Williams said:  

‘There is something of a personal and social tragedy reflected in these cases. If we understand that much of the difficulty that autistic people suffer is caused by society – as per the neurodiversity paradigm – then it is the case that these two nameless men were failed by society. They felt that their lives could not find a place in an unwelcoming world. It is, of course, their choice to end their lives but I do also think that God chose to start their lives and finds them to be infinitely valuable. They were both made in God’s image and reflect something of it. That they felt there isn’t a place for them that is suitable is a tragedy because society should do better to welcome them.’ 

The word ‘welcome’ is striking to me here. What does it mean to welcome someone, not to merely include or tolerate, but to really welcome someone, even if they seem ‘a little bit different from others’? Dr Léon van Ommen, another theologian who writes about autism, suggests that it is a matter of making oneself and one’s resources fully available to that person, to the point where they feel that you belong to them. This is not to promote relationships with unhealthy power dynamics, but to highlight that when a person feels truly welcomed by another, they feel the opposite of owing a debt or being a burden – they feel they are of value, that you would be lacking something without them.  

I feel we are lacking something without you, “2019 (22), male, 70s, ASD”. And I feel we are lacking something without you, “2021 (26), male, 20s, ASD”. Not to forget the 37 others who are a little like you. We can pause to reflect on the social messages that you have sent, what you are teaching all of us about what it means to live a “good” life. But I am sorry that you have all died now and we cannot hear more.   

Whether people in the UK should be able to choose physician assisted suicide, I, personally, am not yet sure. Like the BMA, I see and respect the very good arguments both for and against. But eight people have chosen physician assisted suicide due to autism or intellectual disability, and when it comes to the social messages that sends, I feel compelled to sit down and listen.