Written by Faye Gardiner, the Dimensions project lead on The Victoria & Stuart Project.
When it came to writing this blog, I was lucky enough to catch up with David, who was a part of the All Together Group on The Victoria and Stuart Project. David is on the Dimensions Council and was involved in looking at approaches for end-of-Life planning for people with Learning Disabilities and helping to create the toolkit for support staff as a part of the project.
I was able to spend some time with David over Teams asking him a few questions about the project, such as what he enjoyed and learnt, to capture his thoughts and feelings about being involved.
What did you do in the All Together Group?
Being a part of the group, we covered a lot of things, but we obviously talked about death a lot. We worked with Irene, Andrea, and Sarah from the university to help create a toolkit for end-of-life planning. One of the things we spoke about was what we would like for our own funeral. For instance, when I eventually die, I would like to be buried at sea and this is my own personal wish. Talking about funeral planning is about finding out what people want; people have their own opinions and wishes and that is what we discussed.
We also had a laugh and a lot of fun in the group, playing games like the Name Game and a game called Pierre, after Pierre the Penguin! One of the games we played in the group was the washing line game. We listened to a story about a person called Bob and then had to put pegs on a washing line where each part of his story started and ended. It was great fun and helped us get to know each other, I enjoyed it a lot!
Working together in the group meant no one got embarrassed, we all shared personal stories about loss and how we felt, and Irene was proud of us all. We worked with Kingston university, Dimensions and MacIntyre, all working together to create these resources. It was amazing.
Being a part of the All Together group meant I also got to meet new friends, and it was great because we got to talk about what we wanted in our End of life and Funeral plans together. It is easy to assume what people may want, but I was saying ‘no, ask me what I want?’ That’s what is important, and our wishes should be respected.
What did you learn from being a part of the All Together Group?
What we learned from being part of the group was learning to work together. Having a laugh was important (always have a laugh!). Yes, there was serious subjects that we talked about, but we also had fun in the group, whether it was Jordan talking about food or us playing games.
The main thing we said in our group is don’t be afraid to talk about death and be honest about how you feel. You don’t want to bottle it up inside. I think many people will think ‘Oh but I don’t want to say that' or 'What if I say the wrong thing?' But it doesn’t matter, it honestly doesn’t matter. It's better that you get it out and say what you feel rather than coming back from that discussion and thinking 'Why didn’t I say that?'.
In the group we used all of the Dimension's values: Partnership, Courage, Integrity, Ambition and Respect. It was important to respect each other. A few people in the group got upset with the discussions, as they had lost people in their life. But I was so proud of all my friends in the group who spoke about losing a loved one. It's not an easy thing to talk about, it is very difficult and emotional, and we all respected that. We were all proud of one another and helped each other out, that was the amazing thing about being a part of the group. We are great friends now and I wish we could all meet up again!
What was your best moment?
My best moment was recording a video with the All Together Group. We made a video about end-of-life planning, and I think we should all be proud of ourselves for recording it. We said we are human beings with learning disabilities and autism, but we have feelings, so please treat us with respect. We are not just a label; we are human people.
We all spoke together at the end of the video saying (about end-of-life planning), ‘Do it right now!’ and started clapping, it was powerful.
Did anything surprise you about being involved in the group?
Yes, I have never been involved in a group like this before, it was my first time, so I was very nervous. I’d never done anything like this before in my life and I was thinking, will the people in the group like me? Will I know what to say? But now I think it is the best thing I have ever done!
By being a part of the group and doing this blog, it is a chance to get what we have done out there. So, people can see what we have achieved and say, ‘wow this is amazing!’ That is what is great about being involved, it's about helping those supported by Dimensions and Macintyre who can and can't speak to have a voice. I can voice my opinion and say no, I don't like this. Yes, I like this. But those who cannot speak struggle to share their opinions, but just because they cannot say it, does not mean they don’t have one too.
I think it's really important to say that everybody's opinion matters, not just one person. Irene was telling me that they have attended a conference in Rotterdam and London to help get the importance of end of life planning out there.
If we hadn't of done this, I think people would just end up with the usual choices for their funeral, rather than what they actually want. It's good to talk about death without saying its ‘morbid’ or a bad thing. We have to talk about death because it happens to all of us, I know that eventually one day I will die, we eat, we drink, we die, those are certain. But it's important that we talk about this subject, just like men's mental health, because people feel like they can’t.
So, it is all about changing people's attitudes in society. I said to Irene in the last group session, it’s about changing the public perception and opinions outside, that it is fine to talk about death, that it’s not morbid, it is perfectly normal and should be done.
Finally, what are three things you have taken away from the group?
Personally, I have learnt a lot from being a part of this group. I am chair of Dimensions council, so I have been involved in conversations before about constipation and created videos for this (that is how I got involved in this project) but being a part of this group has been amazing for me.
I have learnt that it is important to be yourself, say exactly what you feel and don’t go home dwelling on why you didn’t say something, just say it there and then so your opinion can be heard. It is also so important that we talk about death and dying, so that everyone's voices can be heard across Dimensions, Macintyre and further, meaning people with Learning Disabilities get a choice when it comes to end of life planning.