By: Jillian Fairweather, ‘Assisted Sisters’
Discussing end-of-life topics is difficult for most of us. The grief, shock, and process of working through these emotions can take time and are often overwhelming. For families with pets, as many of us do, the loss of an animal can be especially difficult, prompting reflection on the deep bonds we share and, at the same time, our own mortality.
So how do we discuss this topic with someone living with an intellectual disability?
Often we don’t—until the moment comes when we must say our goodbyes and face the reality of loss. For siblings of people with disabilities, these moments can feel even more complex, sitting alongside a lifetime of shared history, care, and responsibility.
A family story about loss, grief and social cues
When I was a child, my Nan was like a mother to me and my sister and brother, a pillar of support for my parents with the challenge of raising three children, including my sister with Autism, Paranoid Schizophrenia and Psychosis. Even up until the day she passed, Nan would look after my sister at her home, providing 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 to say goodbye. There were no questions during this difficult conversation, but looking back, I don’t believe we opened that door and encouraged those questions either.
For my sister, expressing her emotions didn’t come as naturally as it did for the rest of us. Throughout the funeral service, she’d quietly ask things like, “Is that funny? ” or “Do I cry now? ”which were a little distracting at times.
And I’ll never forget the moment tears were shed by my family and me. My sister looked around the room, then let out a sound that was basically her laugh, just more drawn out. It was one of those moments where you could feel distant relatives staring, clearly wondering what on earth was going on.
In her defense, it did appear that this was the socially appropriate time to make this noise and to move happily onto the finger food as soon as possible, and so she did in record time, bless her.
Experiences like this are not unusual. Many people with intellectual disabilities learn social rules and expectations in different ways and may need more explicit support to understand grief, rituals, and what’s happening around them.
Why we avoid end-of-life conversations—and why that matters
During a recent search online to find resources to assist with end‑of‑life topics, I came across some sobering facts. People with disabilities are regularly sheltered from discussions around mortality and death. I suppose this is because we often assume it might be harmful or frightening for people living with an intellectual disability.
Many individuals with disabilities also have little to no input into their own end‑of‑life decisions—including funeral arrangements, advance care planning or organ donation. For siblings who may become key decision‑makers over time, this can add another layer of emotional load and uncertainty.
Avoiding these topics can mean:
- The person does not understand what is happening when someone they love dies.
- They may feel excluded from important family rituals and decisions.
- Siblings and other family members carry more responsibility without clear guidance.
Siblings Australia regularly hears from adult siblings who are trying to navigate end‑of‑life discussions and future planning for their brother or sister with a disability. Accessing information and support early can make these conversations a little less daunting.
A research‑based resource: Talking End of Life (TEL)
Studies such as the ‘Dying to Talk Project,’ funded through an Australian Government Department of Health and Chronic Disease Grant Program, highlight the importance of these conversations. Researchers from the University of Sydney, Keele University in the UK, and Unisson Disability have spent over ten years exploring end-of-life topics for people with disabilities.
This work has led to the development of 12 modules designed to support and guide these important discussions, organised into three key topics.
Talking End of Life (with people with intellectual disability) – TEL is the online version of this project. It is a free, research-based toolkit that shows you how to teach people with intellectual disabilities about the end of life in everyday contexts.
TEL is designed mainly for disability support workers, but it is also helpful for families, health professionals, and educators—and with support, some people with intellectual disability may find it useful themselves.
It’s a bit of a gem—a great find—and I’m sure it will help those of you who want to start exploring these often untouched, taboo topics, whether now or when that “how do we?” A moment arises.
For siblings who want to build their confidence in having these conversations, it may also help to combine TEL with sibling-specific information and support through organisations like Siblings Australia.
About the author
Jillian shares her lived experience as a sibling of a sister with Autism and complex psychosocial disability and the path to advocacy this has paved. Her writing reflects an interest in all topics—big and small—that relate to the lives and matters of people with disability and their families.
