Friday, 9 July 2010

Where is God in dementia?

In the most recent edition of the New Blackfriars journal, there's an article by Peter Kevern called ‘Sharing the mind of Christ: preliminary thoughts on dementia and the Cross’. He says that as we live longer, dementia affects more and more of us: about 25% of the UK population will suffer a significant degree of dementia at some point. And this raises all sorts of tricky theological questions, because it dementia looks, from the outside, like the slow disintegration of a person’s self, as though we are losing them before their bodies cease functioning. If someone with dementia can’t recognise their family, or remember anything about their life, or even know who or where they are, are they the same person they were before? Can God be there, still, in the midst of a life which seems to be falling apart? Kevern argues that part of the problem is that we tend to think that what makes us human, what makes us ourselves is self-consciousness; partly in response to dementia, he suggests that we need a different, better account of what it means to be human.

There have been different theological responses to dementia. Some people have suggested that, even as a person’s memories slip away from them, they are held by God: he remembers, even when we forget. But this still portrays dementia as a tragedy, and people who are suffering dementia as less than whole people. And it doesn’t explain why families feel that the person they love is disappearing. Another response is to say that a person isn’t just constituted by the things they know, but by their relationships with other people. We are our relationships with our family and friends, just as the doctrine of the Trinity teaches us that God is constituted by the relationships of the Father, Son and Holy Spirit. But if this is the case, would a person on a desert island slowly become less human? More importantly, given how isolating dementia can be, does this mean that a person becomes less human as the disease progresses and they progressively lose friends and family?

Kevern says that the message of the cross is that there is no sort of human suffering in which God cannot be found. He suggests that we see Christ on the cross as ‘demented’, and so see God as present right in the midst of dementia. The history of the doctrine of the incarnation is the history of the church insisting, over and again, that Jesus was human in every way that it is possible to be human. Perhaps one of the most characteristic traits of all people, not just those with dementia, is that we aren’t perfectly self-aware or self-conscious all the time. If Jesus on the cross took with him every sort of human frailty, surely he must have taken on this as well? Hanging on the cross for hours on end, after being kept awake all night, beaten and condemned, he must surely have become delirious; by the time he died, surely he cannot have been fully conscious any more?

But if we’re going to argue that Jesus ‘demented’ on the cross, this raises the important question of whether he can have freely chosen his death; or isn’t our salvation thrown into jeopardy? If we’re going to say that delirium, mental deterioration and semi- or unconsciousness are part of the human condition, we need an alternative to the idea that it is self-consciousness that makes us human. Kevern suggests three things that make us human:

1. Boundedness. We are all born, grow and develop, decline and die. Our lives have a beginning and an end, and all sorts of processes of learning and forgetting in between. To be human is to have the potential to suffer dementia, and people with dementia make visible one of the possibilities of humanness. Because everything that makes us human comes from God, God is present in and through our forgetfulness. Dementia has the potential to be grace-filled, and to show us something of who God is and what it means to know him.

2. Connections to past and future. We don’t exist as isolated moments in time, but as the whole story of our lives, including what went before us and what remains after we are gone. The choices we make now affects what happens in the future. Jesus didn’t just choose to follow God in Gethsemane – the whole story of his life was a story of everything that he was being given over freely to God. People with dementia are still the same people they were before: dementia is only a part of the story of their identities.

3. Relationships with others. Our identity is not ours alone. We are not just who we choose to be, but who we are for other people. We do not make ourselves single-handedly: we collaborate with others to forge our identities, just as the identity of Jesus is not just what he did and said, but also how others responded to that, how the Church recorded, honoured, and lived out his story. People with dementia are what they say and do; but they are also how we remember them, how we treat them as their minds move towards death.

‘Those who are dementing’, says Kevern, ‘have many things to teach those of us for whom dementia may yet be to come.

Photo credit: *hiro008

5 comments:

Revsimmy said...

Marika, this is a marvellous post. A few years ago I thought hard about researching some of this for a Masters in Pastoral Theology, but eventually went with something else instead. There's been quite a bit written recently about pastoral care of dementia sufferers and their families, but much less about the philosophical and theological questions and challenges that dementia raises. Thanks for raising the issues again and pointing me in the direction of (for me) some new reading.

seymourjacklin said...

Yeah, I second that, this is a great post, really interesting. I wrote a long rambling comment about how this put me in mind of Carl Roger's Humanist concept of "Unconditional Positive Regard" and then tied myself in knots when I realised that there's a lot of stuff I have not thought about as much as I thought I had in spite of being a nurse ... so I thought I'd just say "great post" and go away and think some more ...

Gabrielle said...

I very much appreciate an attempt to show theology and God through dementia. From my reading of blogs by those with disabilities I would bring up a couple of problematic points, given that (I assume) neither Kevern nor you have dementia or any other significant disability.

"To be human is to have the potential to suffer dementia"
Many disability activists ( http://benefitscroungingscum.blogspot.com/2010/06/i-dont-suffer-guest-blog-by-elena.html , http://astridvanwoerkom.wordpress.com/2010/06/19/on-disability-and-suffering/ ) think that describing individuals as suffering from a disability to be an inaccurate representation of most disabled people's experience. It places them in an othered position, Most of this work seems very good at normalising the experience of those with dimentia and it is a shame to have been let down by this.

"Our identity is not ours alone. We are not just who we choose to be, but who we are for other people."
I understand the intention behind this, but I always worry when people say things like this due to the history of those with societal power and privilege defining the identity of those without. Often those doing the defining are in a majority - being so does not make defining someone else against their will all right. I agree that there is a social aspect to our identity, but we should also respect who others tell us that they are, and shouldn't define them in a way which is inconsistent with how they see theirselves.

"'Those who are dementing’, says Kevern, ‘have many things to teach those of us for whom dementia may yet be to come.'" Often the lives and experiences of those with disabilities are presented as having no value apart from teaching those who are able bodied/neurotypical. This is otherwise known as the very special lesson trope. The stories and experences of disabled people is important in and of themselves, and for the disabled people. Everything is not about the non-disabled.

Marika said...

You make some really interesting points, Gabrielle. But I think dementia is different from other disabilities is that it is always a process of degeneration, part of the gradual failure of body and mind which leads inevitable to death. It's a disease of old age, and insofar as we view death as suffering, I think that dementia is also something that we suffer.

You're also right that the communal construction of our identities can be oppressive; but I don't think that means that we can ever escape the influence of others on our selfhood, however positive or malign that influence may be. We have real agency of our own, real choices; but those choices are always circumscribed by the context in which we make them, over which we never have perfect control.

Andrew said...

Hey, thanks for this, it is something I worry about.

But I don't understand why the 'God remembers as we forget' approach isn't the best one.

1. Dementia is a tragedy, so the fact that this approach makes it look like one is fitting.

2. Personhood isn't exclusively bound to self-consciousness or memory or character, but when all of these are in decline then personhood is also in decline.

2a. Yes we are socially constituted, but only partially; and in dementia we move into different and generally more peripheral social roles.

3. We already have an effective model of partial selfhood in babies and young children: these are accorded full human respect and dignity, but are not able to make decisions about anything, including salvation, and are (I would say) only developing gradually the ability to act (im)morally. Why not understand dementia in the same way: we must gradually cast a veil of mystery over the person which only God can fathom, as we continue to care for what we can still see.