Intellectual disability – talking about bereavement and death during COVID-19

Intellectual disability – talking about bereavement and death during COVID-19

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.

Understanding death and bereavement with an intellectual disability

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.

The need for very clear communication

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.

Talk about death openly, honestly and simply

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.

  • Explain COVID-19 clearly and simply, and use visual cues to help people know what they must do to stay well. Always explain exactly what is happening and might happen, so that the person you share with is not surprised or shocked when a person dies.
  • If at all possible, never keep a person away from their dying loved one if they want to be with them. If they cannot be present, acknowledge how difficult it is that we can’t be with the person we love as they die or after they die. It is hard not to be able to say goodbye. This is especially important during COVID-19.
  • If a person is dying, or ill with the virus and might go to hospital, it is important that the creative communicator has some information about going to hospital and resources to be able to communicate.
  • Try to use visual resources that can be shared, online or in person, especially during social distancing.
  • Acknowledge a person’s sadness and encourage them to show their emotions. Spend time comforting and being comforted by a person who communicates creatively – so they are not only a subject of care – but can also give care too. By sharing emotions and the experience, you are being present with one another and showing empathy. This is the same if you are living with a person, if you are cared for by staff or if you are having to practice social distancing.

Learning from 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.”

Death and bereavement resources for creative communicators during COVID-19

Visit the Kairos website for a range of resources and advice including:

When someone dies from coronavirus: a guide for family and carers.

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.

The Art of Dying Well