The Beginning of the End

Discussing end of life subjects is difficult for most of us, the grief, shock and processing of these emotions can take time and are often confronting.

So how do we discuss this topic with someone that lives with an intellectual disability? 

Often we don’t… until we have to. 

My Grandmother was like a mother to me, my sister, and brother, a pillar of support for my parents raising three children, including my sister with Autism.

Even up until the day she passed Nan would look after my sister at her home giving my parents some much needed respite. When Nan passed away it was difficult to explain to my sister that she would no longer see her and that the funeral for Nan would be a chance for the final goodbye. There were no questions, but looking back I don’t believe we opened that door and encouraged those questions either?.

For my sister expressing her emotions did not flow as naturally as it did for the rest of us. Questions such as “Is that funny?” and “Do I cry now?” throughout the service were just slightly distracting, let me tell you. When everyone began to cry my sister looked around and produced a noise very similar to her laugh but more drawn out. That was one of those moments you feel the stares from those distant relatives wondering… “what the?”. In her defence, it did appear that this was the socially appropriate time to make this noise and move onto the finger food as soon as possible, which she did – in record time.


On a recent search through the internet to find resources that can assist with these end of life topics, I came across some interesting facts. For example, people with disability are regularly sheltered from discussions around mortality and death. I suppose this is because we assume this may be harmful or create fear in those that have intellectual disability, and that most people with a disability have no input into their end of life options such as funeral services or where their organs may end up.

Studies such as the ‘Dying to Talk Project’, an Australian Research Council funded partnership between The University of Sydney, Keele University in the UK, and Unisson Disability, have spent ten years researching end of life and people with disability.  This has lead to the development of 12 modules to assist in the facilitation of these important conversations presented in 3 key topics for those that wish to approach these topics in smaller more, relevant chunks.

TEL or Talking End of Life (with people with intellectual disability) is the online version of the project and has an abundance of resources to assist us every day folk.  Thank goodness for this gem, it’s a great find and I am sure it will assist those of you who would like to open up these untouched topics now or when that ‘How do we?’ time arises.

You can find the link here If you do check it out please let me know if you, too, have felt inspired to embark on these important conversations with a loved one or somebody you support about their end of life thoughts.

Our blogger ‘assistedsisters’ shares her lived experience as a sibling of a sister living with Autism and complex Psychosocial disability. The insights into her family life contribute to an interest in all topics big and small that relate to the lives and matters of people with disability and their families.

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