Article
Assisted dying
Death & life
4 min read

Behind the data: the social messages physician assisted suicide sends to the autistic

If intense suffering caused by society drives autistic people to seek assisted death, then society has failed.
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 four per cent, but the prevalence of diagnosed autism in the Netherlands is only one to two 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.  

Article
Comment
Grenfell disaster
Justice
Death & life
Politics
7 min read

Grenfell: a tale of two towers

The Inquiry offers an opportunity to change the way we treat each other

Graham is the Director of the Centre for Cultural Witness and a former Bishop of Kensington.

A wrapping around the Grenfell Tower bears a giant green heart.
The Blowup on Unsplash.

Graham Tomlin was Bishop of Kensington at the time of the Grenfell Tower fire. This is the first of a short series of articles reflecting on this milestone in our national life. 

The Grenfell Inquiry report is brutal. None of the companies involved in the renovation of Grenfell Tower escape. Arconic, Kingspan, Rydon, Celotex, Exova and many others – all have a lot to answer for.  Listening to the statement by Sir Martin Moore-Bick and reading the report, words such as ‘failure’, ‘dishonesty’, ‘misleading’, and ‘defective’ sounded like a tolling bell throughout his account.   

This was a tragedy that was decades in the making. Reports came out, warnings were issued and routinely ignored. A government which led a campaign of de-regulation without looking at the consequences for safety, a local council that failed to plan ahead for such an event, a tenant management organisation that treated the tenants they were supposed to serve with disdain, all played their part. The construction industry fared even worse. A culture of unholy competition, ‘value engineering’ (another term for deception), cost-cutting, a scramble for market share all took precedence over the safety of the people who were going to live in the newly clad flats of Grenfell Tower.  

In the past, initial reports such as those on Bloody Sunday in Northern Ireland and on the Hillsborough disaster, were weak affairs, failing to listen to the voices of victims, too careful to preserve the status quo, only leading to further anger, and further reports which finally began to address the key issues. This report has not pulled its punches – perhaps because they kept the human side of the tragedy in mind throughout. 

In the early stages, in an inspired move, the Inquiry decided to offer an opportunity for bereaved family members to simply describe the people who died in the fire. It was intensely moving as the richness and colour of each person was described, celebrated and mourned. As a result, this Inquiry has never quite lost the human nature of this tragedy and I suspect that is why its results have been so hard-hitting. 

No blame for the victims - instead he demands a radical national repentance, a re-examination of deeper social and spiritual trends, and for a radical turnaround of attitude. 

Jesus and another tower 

Remembering the human scale of the disaster is vital, yet in itself, it does not lead to change. At one point in his public teaching, Jesus was asked about another disaster involving a tower which led to the tragic death of a large number of people. At some point during Jesus’ time in Jerusalem, it seems a tower collapsed in a part of the city called Siloam, killing 18 people. This tragedy clearly had a significant impact across the nation, and people started asking what it meant, and what it said about the society in which they lived.  

Jesus' words were harsh:

“Those who died when the tower in Siloam fell – do you think they were more guilty than all the others living in Jerusalem? I tell you, no! But unless you repent, you too will all perish.’”

No blame for the victims - instead he demands a radical national repentance, a re-examination of deeper social and spiritual trends, and a profound change of mindset. If they don’t, such disasters will continue to happen. When disaster strikes, it doesn’t say anything much about those caught up in it, but it does give us an opportunity to take a good look at ourselves.  

Jesus said that the two most basic commandments, the things we should set out to do every day of our lives, were to love God and to love our neighbour - who is deserving of love because they are first made and loved by God. The Grenfell story is an object lesson in what happens when those commandments get ignored. This is what happens when these commandments are superseded by other imperatives, such as to increase market share, to beat the competition or to safeguard the reputation of our own organisation.  

Grenfell was the result of a culture that has become so individualistic that we have lost sight of the fact that we are our brothers’ (and sisters’) keepers, that we have a responsibility for each other, and that we find purpose and meaning in loving our neighbours as we love ourselves, whoever they happen to be. I am sure that the employees of Arconic, Rydon, Kingspan and the Tenant Management Organisation of RBKC, would have done anything they could to ensure that they and their families enjoyed a safe and secure home. They simply failed to do that for those they were meant to serve through their work. They took care of themselves and their own. They lost sight of the people their work affected. They did not take care of their neighbour.

It is the individuals and institutions that have the resilience and flexibility to face up to failure, learn the lessons and to be open to change which ultimately excel. 

What happens now?  

Matthew Syed’s 2015 book Black Box Thinking looked at responses to catastrophic failure. He contrasted the approach of the medical profession with the aviation industry. Too often, he argued, when an error is made in the world of healthcare, the instinct is to cover up failure for fear of litigation or in order to protect reputations. As a result, he suggested, the same mistakes are often repeated, which means that thousands of people continue to die in hospitals every year due to preventable error. When a plane crashes, however, the ‘black box’ is recovered, data painstakingly analysed, and no stone is left unturned in order to determine the exact causes of the disaster to make sure that it never happens again. As a result, plane travel has become one of the safest means of transport we have.  

The companies and organisations that were meant to protect the residents of Grenfell failed in that duty. Yet the moral of Syed’s story is that failure is not something to be feared — but an opportunity to change. It is the individuals and institutions that have the resilience and flexibility to face up to failure, learn the lessons and to be open to change which ultimately excel. It is what the Christian church calls confession and repentance – the willingness to admit when we have got something wrong, bear the consequences, ask for forgiveness, resolve to learn from the error of our ways and to become a better person through it. Repentance is not wallowing in self-pity or hiding in a corner from the wagging finger of guilt; it is an invitation to honesty, to growth and to transformation.  

Those responsible will need to face justice. Yet if we allocate blame, punish the guilty, and then carry on as before, then there is no guarantee that something like this will not happen again. We might issue new types of building regulations, or safety measures in construction, but even that would not be enough. The kind of repentance that Jesus, and indeed the Grenfell Tower fire calls for is deeper - a radical look at the way we live together in our society.  

This involves all of us. As Andrew O’Hagan put it in a long article soon after the fire in the London Review of Books:

“In all the loosening of cares and controls and emergency services, it’s not just the current government but a succession of them that lie behind those deaths, and who, if not all of us, voted such vulnerability into existence? No one did well. If civic life is dead, with a 24-storey tombstone beside the Westway, it died in the times in which we too lived, and by the values we lived by. The point of a society, if we have one, is that when bad things happen, it’s everybody’s concern.” 

Grenfell is such an opportunity that we dare not let pass. If we carry on as normal, with our atomised individualism, our addiction to comfort, our spiritual poverty, our disregard for our neighbours, we would miss a huge opportunity to address some of the deeper issues in our life together, not to speak of refusing to heed the call of Jesus for true repentance.

In his statement in the House of Commons, Keir Starmer pledged a “profound shift in culture and behaviour.” I hope - and pray - this is what happens. Yet it will take more than changes to building regulation and for safety. It needs spiritual and not just political change, as I’ve argued here before. It would mean each of us looking at ourselves, and the cultures of the organisations of which we are a part (yes - including the church), and responding to the call to love God – to re-orient our lives around something, someone bigger and better than us – and to love our neighbours as much as we love ourselves. What if Grenfell sparked a fundamental change back to that more connected vision of who we are and what we are here for? Grenfell - and this report - is a shock to our system. Let us not waste it. 

 

Listen to Graham discuss Grenfell on BBC Radio 4's PM programme.