As part of trying to come to grips with my mum’s dementia diagnosis I have been reading an excellent book by John Swinton Dementia: Living in the Memories of God. In the book he discusses the idea of human personhood in great detail. Here I will summarise some of those ideas and add to them.
Swinton points out that it is not sufficient to say that personhood is about relationships. Although defining a person this way is better than defining person as someone who is intellectually capable, it nonetheless has serious problems in regard to people with dementia. Once a diagnosis of dementia has been made, the individual with dementia often loses friendships. People who have been friends no longer want to be friends, and this situation worsens as the disease progresses. In her book What the Hell Happened to My Brain, Kate Swaffer, an Australian academic diagnosed with early-onset dementia, explains how this fact affected her. “Many of our friends simply do not want to engage in our journey, and if we aren’t able to fit into their world any more, we are simply left out” (p 64). Some have not spoken to her at all since she told them of her Alzheimer’s diagnosis. According to Swinton, in liberal societies friendship is based on both parties getting something out of the experience. So once the person with dementia ceases to recognise the friend there is nothing in it for the friend. Therefore people with dementia become cut off from relationships. The only ones who relate to them are those who feel socially obligated to do so or those who are paid to care for them. Consequently, if personhood is about relationships the person with late-stage dementia effectively becomes a non-person.
But Swinton uses the philosophy of Jewish philosopher Martin Buber. Buber distinguishes two kinds of relationships: I-It and I-Thou. I-It relationships are utilitarian and measureable. If I relate to an object I have no moral obligations toward that object. It exists for a purpose. It either serves that purpose or it does not. If not then I can discard it without moral or ethical consequence. Persons are different. If I relate to someone as thou instead of it, I am related in a personal way. Personal relationships demand something of me. I cannot treat the other as a utility to be used for my benefit. I cannot discard the other when that other no longer serves a purpose for me. Buber was a Jew and his philosophy was therefore grounded in his religious beliefs. Swinton insists that it is not possible to use Buber’s philosophy of I-thou relationships correctly without realising that this is based on Buber’s understanding of God. God, according to Buber, is a person and he relates to humans as persons. Therefore, Swinton argues, the personhood of someone with dementia is not removed by lack of human relationships; it is upheld by the fact that God is a person and relates to the individual with dementia as a person. The personhood of someone with dementia is grounded in the fact that God is a person.
Now I am not a Jew, but I am Christian believer. So I want to explore this idea in a slightly different way. When I read this argument I asked: How can God be a person in eternity when he had not created human beings to have relationship with? And if he was not personal in the eternity before creation, how could he create humans as personal beings? Here the difference between Judaism and Christianity is very significant. The Christian understanding of God is that God is Trinity; he exists in three persons: Father, Son and Holy Spirit. Because God has eternally existed in relationship he was always personal. So he could make humans personal. Being made in the image of God makes us personal, that is, relational beings.
I agree with John Swinton that human personhood can become a problem for people when relationships are difficult or when they are removed. In the case of autism, sometimes relationships are difficult to form, because autism (especially in the most severe form) makes it hard to relate to others, to understand social rules and to communicate with others. In the case of dementia, the relationships are often removed from the person. In either case, being cut off from relationships seems to call the personhood of the individual into question. Unlike Swinton, I want to say that it is Jesus who upholds our personhood. As the God-man, Jesus is the one who was eternally a divine person and then be became a human being. His personhood is eternally grounded in his relationships in the Trinity. He united himself with humanity, gifting all humans with personhood. Because it is Jesus who makes us persons, other people cannot take away our personhood. Even those people with late-stage dementia whose friends, and sometimes family, have abandoned them are still persons. They cannot be other than persons because Jesus has given them personhood.
This implies a moral and ethical obligation of everyone to people with dementia. It implies that these people are deserving of relationships. Forgetting the names of friends and family or even forgetting their existence does not take away personhood. As Swinton points out, there may be nothing in it for the visitor. But genuine friendship is not about getting something for yourself. True friends will stick with the person until the end. Although I can see that this is an argument that rings true, I find myself wondering how I can live with this ethic in a way that it not utterly hypocritical. As an introvert with a probable autism spectrum disorder, I find it difficult to make conversation with people who respond to me. How might I relate to someone who cannot recognise me or cannot respond? No idea. The only way I can imagine being able to do this is that the same Jesus who gifts us with personhood also gifts us with his strength in weakness (2 Cor 12:9). He pours his love into our hearts through the Holy Spirit (Rom 5:5).
If you have enjoyed this blog post, then please share it. Also consider reading my book Autism, Humanity and Personhood, which explores the issue of personhood.
 I have not come to the end yet, so my apologies to John Swinton if he addresses these thoughts later in his book.