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17. It takes time

Written by Meg Wilding, Best Practice Administrator and the MacIntyre project lead on The Victoria & Stuart Project.

Generally there is a huge reluctance to talk about death and dying to a person who draws on our support, in my opinion this is due to a number things:

  • Not wanting to upset a person

  • Not wanting to upset flat mates or family

  • The worry about a change in behaviour which may or may not arise in talking about a sensitive topic

  • Not seen as “a responsibility”

  • Not the right time

  • These are just a few barriers that there may be.

From my experience so far on the project I have seen how important and empowering it is to a person with a learning disability, autism or both to have the conversation and easy read information about death, choices and funeral planning.

David who is an expert by experience, is part of the All Together Group. He has gone from strength to strength when given the opportunity to talk about death and dying.

In the past we have spoken about funeral planning with David, and he would say Not time yet, I’m too youngwhich was absolutely respected and his honesty admired. To help with the conversation we used Books Beyond Words pictures - one of them showing a coffin in a hearse, I remember David shrieking ooooohhh no looking away, and being upset - we then turned the picture around so we couldn’t see it, David was then happy to continue talking.

After attending five All Together Groups David’s confidence has soared (and so has his support worker’s) and it’s such a privilege to see this! At our last group David proudly shared with us that he had completed an accessible draft funeral plan that we created as a group, you could see his pride beaming through his smile, and the icing on the cake: he completed it independently! (David has given us permission to give you a sneak peek at what he said, so take a look below).

This proves that ‘it takes time’. 7 months ago David was upset at the images of a coffin and the thought of creating a funeral plan - through conversation, support, accessible information and activities about death and dying, David’s confidence and knowledge has grown, and he chose to complete a funeral plan, despite being upset before.

When I look back at the barriers I listed earlier, these are all obstacles that we as staff have, and our subconscious assumptions that a person with a learning disability, autism or both wouldn’t be able to cope with the topic, is it because deep down we find it hard to cope ourselves?


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