Steve Palmer's blog about his son Stanley - who has Down's Syndrome - & the extended family. All about Down Syndrome and learning disability.

Saturday, 20 December 2014

People with learning disabilities: Going to funerals and explaining death

Here's a cheery Christmas subject....But this week I was talking to a friend who works at the National Council for Palliative Care; and it reminded me that I've got strong views on this but have never written them down. Here goes.

In 1997 it was apparently discovered that 54% of people with learning disabilities didn't go to their parents' funerals. Crickey, I hope that stat has improved. You can perhaps assume that many of those people were adults with learning disabilities. Which makes it even more of a shock.

And what about the shock of not seeing a parent again, only for the rest of the family to cover up why that won't happen. In 2007 I met a woman who was organising a play by people with learning disabilities, about how they want to go to family and friend funerals. Powerful stuff.

But a quick internet search is a pretty depressing experience when looking at this issue. It's just a sea of confusion. I apologise if quality work has been done on this, but Google's not showing it. What's needed is a decent, accessible and friendly guide that demystifies the whole process. Of course it's a sensitive and challenging issue, but, as with many complex things in life, the answer mustn't just be to go for the apparent easy option. 

Where I work we've just put out a video about how people are told that a relative or friend is dying. It's about how the words used, and the explanation of how those words are used, can have a big effect. I also think it'll be helpful to people with learning disabilities and their families. 

And it's not just death and dying. The Alzheimer’s Society and the British Institute for Learning Disabilities have brought out a resource; it’s to help explain dementia to people with learning disabilities.

This can be handy for us as a family, because I don’t want to keep telling Stan that my uncle, who has dementia, is ‘ill’. We don’t want to shield Stan from things and attempt to keep him in a child-like bubble (it's all in the book).

Stan's Grandad died in 2010 and Stan was nine. He didn't go to the funeral. But I was close to lobbying for him to go. Nowadays, I'd want him to go to a funeral.

As Stan heads to adulthood, this issue is something I aim to keep on the agenda.

The book, the audiobook, the podcast & the newsletter

Down's with the kids - The book / Audiobook / The podcast Listen to the podcast on Spotify Subscribe to a weekly quirky learning d...