Death is the end. An absolute. Or the absolute end of the person who once walked this earth. The person we loved ceases to exist in their earthly form. And, regardless of what we believe about what comes after, the finality of death is a difficult concept for all of us to grasp. Imagine how hard that is if you have a learning disability and already struggle to understand day to day life, without grappling with the concept of death.
Recently my mother, Norah, died aged 96. My son James is 44, has a learning disability, and was at her bedside as she took her final breath. He was able to kiss her and tell her loved her before, during and after her death. He dealt with the whole experience with dignity and maturity.
For James, or any other person who lives with a learning disability, to reach that level of maturity takes time, patience and love. There is an African saying that it takes a whole village to raise a child. In my experience it takes a whole community to bring a learning disabled adult to maturity. And in Esk Valley we have just that community.
As a child James had a fairly concrete thought pattern. His first encounter with death was when he was maybe 12 or so. I’d always tried to answer any question he asked as fully and honestly as possible. When he asked what would happen to my Auntie after her death I explained that we would put her body in a box, and put the box into the ground. James thought long and hard about this, and asked with incredulity “you put her body in a box?” That’s right I said. His shocked reply was “well what will you do with her head?” When concepts are abstract, confusion reigns. So from that day I resolved that he would learn things experientially.
Many years later we visited Botton Village for the very first time. James fell in love with the community and decided there and then it was where he would spend his life. For me the abiding memory of that visit was the graveyard, and seeing graves of villagers, co-workers and houseparents side by side, in equal harmony in death as in life. I knew then that this was the place for my son. I had complete confidence in a holistic model of care, until his dying day.
Botton, and later Esk Valley, have supported James in so many ways, not least in coming to terms with and understanding death as a part of life.
In these sanitised days of the 21st century our involvement with death is marginalised, even more so now in these Covid defined times when we cannot be with our loved ones in hospital and numbers at funerals are limited. So we have learned to see death as an occurrence, as something that happens elsewhere, to other people.
But death is a process. One that starts the day we are born. And dying as an act is as much a part of living as any other part of the process.
When my son was born I was a young woman of 24. After his first few days in an incubator the hospital wanted to discharge me. The nurse said “Don’t worry love. You don’t need to take him home with you. He’s only going to be a cabbage. Just leave him here. We’ll find a home for him”. I still cry when I recall those words, and look at the fine man I have raised, not being a cabbage, but growing cabbages, baking bread and being a valued member of the community.
His grasp of so many things has been gradual, but I believe the concepts he has understood have been the important ones. When his Grandad died James was living at Rowan House, and Ruedi organised bereavement counselling for him. Grandad was talked about openly and with love, helping James to understand this process that we are all due to experience one day.
During James’s time at Botton several of his peers and friends became ill and died. Always these has been spoken of openly, and death bed vigils have been part of the pattern of life. Funerals have been planned and attended, services tailored exquisitely to the individual, and open coffins revered. I particularly remember Netty’s funeral, with its overriding Scottish theme, the piper, the wicker coffin, the beautifully decorated cart that carried her to the graveyard, the ever darkening sky, and the heavens opening at exactly the right time.
It is these rituals that inform the understanding of the learning disabled individual. Being an active participant in the care of the dying and recently dead. Being helped to understand that death is part of life, and that grief is ok, even when the deceased was ready to move on to their next journey. Discussing life, death, and all its meanings in Bible evenings. And respecting that learning disabled people do not need to be protected or screened from the harsh realities of life and death, but enabled to embrace it all.
So thank you to all the co-workers past and present who see our family members as individuals who are able to fully participate in all that is, in both life and death. Thank you for helping us to create mature, fully rounded individuals, who will cope when we parents finally move on and who can play an equal and active part in the community.