Big Picture: I'm no different
Lewis argues that he is not defined by dementia: ‘It isn’t who I am. It’s part of my situation.’ Rather than others feeling ‘sorry for you’, Lewis asks for ‘a sense of letting you be you, whatever the situation is, letting you experience this in your way’.
I have worked with Lewis on a dementia project, ‘I Will Tell You Something of My Own’, aimed at combating the stigma that still surrounds dementia. It explores personhood through poetry, song, photography and everyday objects, challenging the notion that people with dementia have lost both their humanity and their value to others. We have produced 3D collages representing all aspects of the individuals’ lives, including, but not limited to, their experiences of dementia. Each frame is accompanied by an A4 page of text, written
in collaboration with participants. These were displayed, alongside poems, photographs and songs, in a six-week exhibition last December.
In Lewis’s frame, the dog collar is one he wore for many years. He worked as a non-stipendiary minister, seeing this not as an occupation, but as ‘a calling’. He says, ‘I always feel a sense that I’ve retained a sort of faith.’ Although Lewis’s own faith is framed by Christianity, he argues that faith can take many different, equally valid forms: ‘I think everybody has a certain amount of faith in something.’ The rock, from a site known as ‘The Hill of Adolescence’ near the Sea of Galilee, is a solid connection to this faith: ‘I picked it up and I thought “Well, I haven‘t just picked this up. This comes from the actual country where Jesus was.” … In a sense I’m there, holding this. I’ve got something that belongs there, not just imagination.’ The cross is another concrete representation of Lewis’s faith. ‘If I need a bit of comfort, I feel the little cross.’ The tie represents Lewis’s time as a postman; the brushes and sketch pad his passion for creating art, particularly of rural settings.
The central photograph depicts Lewis and Mary’s Ruby Wedding anniversary. For Mary, this photograph gives ‘some idea of the depth and breadth of our number of friends’. Lewis constantly shifts the conversation to others, even when asked to talk about himself. The responses of others to dementia can threaten this connectedness and social support. Lewis expressed this beautifully: ‘If somebody came up to me and said, “I don’t know what to do about my dad or my brother. The way he’s smelly, got spikey hair, drinking…”, I would say “Don’t ever think that you’ve got to separate yourself from them, because you don’t like what’s going through his life. Because to separate yourself is no good, to stay a friend is.”’
BPS Members can discuss this article
Already a member? Or Create an account
Not a member? Find out about becoming a member or subscriber