It is really important to communicate openly, honestly and in a way that is creatively simple with people who have a learning disability. This is particularly important in relation to death, dying and bereavement, and even more so during the COVID-19 coronavirus pandemic.
Cristina Gangemi, director of independent consultancy, The Kairos Forum, writes for The Art of Dying Well about helping people with a learning disability understand death and bereavement during the COVID-19 coronavirus pandemic.
“Yes, everyone is busy because there is a virus in the house. I have tried to see it, but I can’t. I know it’s dangerous, can you tell me what it looks like?”
The above was said to me by a young woman who communicates ‘creatively’ during a recent telephone conversation. I describe it that way as I rarely use the label intellectual disability or learning disability, because it doesn’t fully express the ‘creative’ ways in which my friends communicate when disabling barriers are removed.
She said that she’d been alone for a long time, and her phone had become her only friend. She was uneasy about where everyone was, and so I asked if she knew why she was in her room, which was when she asked me about the virus in the way in which I have described.
People who live and learn visually think and process visually, and so it is very important to explain the real things that happen in their lives, and to do so in a way that they can process. If we don’t, people might live in fear and, if they get ill, go to their death in utter confusion.
It is really important to talk about death and bereavement with creative communicators openly, honestly and in a way that is creatively simple. Here are some basic principles that can help you talk about death with creative communicators.
In this difficult and challenging time, when death seems to be all around us, where people may sometimes die alone, let us learn from our creative communicators. Let us make SPACE – an acronym for a Sacred Place for Accessible Communication and Empathy, where all can express their sadness and hope.
I will finish with a small pearl of wisdom from a conversation with my friend Sean, who lives with cerebral palsy.
“Sean” I said: “the thought of people not dying well, of being alone, is unbearable”.
Sean answered: “Ah, nobody ever dies alone, for even if we are not there, God is.”
Visit the Kairos website for a range of resources and advice including:
More about the author: Cristina Gangemi, is the director of independent consultancy The Kairos Forum. Her work has been guided by Irene Tuffrey Wijne and Baroness Sheila Hollins.
She a has a Masters degree in pastoral theology and lay ministry, with a special focus on disability. Her experience and expertise includes special education, the training of specialised lay ministers, differentiated pastoral support, parent support and creative, practical theology. Cristina has recently worked with the Pontifical Council for Culture and the Pontifical Council for Culture and for New Evangelisation and Catechesis on issues regarding disability and is author of First Communion programme: I belong Special and Because I am: Christian accompaniment for the unborn child and their parents with a pre-birth diagnosis of disability.