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5. We should have the chance to make our decisions for ourselves

Written by Amanda Cresswell, Research Assistant, Kingston University

My name is Amanda Cresswell. I have learning disabilities. I have been a researcher for more than a decade, working on different projects with Irene and my colleagues. We do research together for people with learning disabilities, to help them in their lives.

I have written this blog by recording it on videos, and one of my colleagues has written it down for you to read.

What is the Victoria & Stuart Project?

I am part of the Victoria & Stuart research team. In this video, I tell you what the project is about.

The Victoria & Stuart Project is about people with learning disabilities having the best care at the end of their lives, and making the right decisions for them, whether they can speak or not, or whether they need help from other people making the decisions. It’s making sure that we follow their wishes and not other people’s wishes. What they want to happen to them in their lives.

It’s important that we make the decisions for ourselves and it happens the way we want the end of our lives to be, rather than somebody else to make the decision and say “Oh, THIS has got to happen”, when it isn’t our decision. We should have the chance to make our decisions for ourselves, which makes it better for us to plan for the end of our life.

It can be difficult and upsetting for people with a learning disability to talk about this. But it’s important that we do talk about it, because a lot of people with a learning disability, they have not found out about it until it’s too late.

And it’s not fair that that happens.

What is it like to do research?

I think people are surprised that I can do research and help people. They don’t think that people with a learning disability can do things like this. I would say that people with a learning disability can do anything they want to in their lives, if they have the right support. Because so many people probably told them, “Oh, you can’t do this.”

I’ve helped to do two focus groups for The Victoria & Stuart Project. I’ve done my first focus group on Zoom with Dimensions and my second focus group in Reading.

It’s important that we are part of the team. Because for people with learning disabilities doing focus groups, they would prefer to talk to someone else with a learning disability than someone who hasn’t got a learning disability, because they haven’t been through the same things that we’ve been through. And they feel more comfortable talking to someone that they can understand.

Not everyone will think of employing someone with a learning disability. But other people can see us and say, “Look, these people can work together as a team! Why can’t we employ someone with a learning disability?”

We CAN do research!

Me and my colleagues in the office, preparing for a focus group.
It’s a serious job but we also have fun! Here we are practicing the "Hat Game" which we use in the focus groups.


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