Transcript: The Life I Want

Podcast Episode: The Life I Want

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MM - Michael McEwan
DM - Donna Marie

MM So on this episode of Iriss.fm we are going to hear about a new project called ‘The Life I Want’, and where I went to speak to Donna Marie. Donna Marie is the coordinator for ‘The Life I Want’. So tell us about ‘The Life I Want’ and why is it important for people with a learning disability?

DM Well, ‘The Life I Want’ is a partnership in Greater Glasgow and Clyde. So people with learning disabilities are heavily involved in that, but it also gives them the opportunity to link in with public services as well, like the NHS, and just make sure that actually when services are being designed then people with learning disabilities are included as part of that process rather than once things have already been designed that possibly maybe aren’t fit for purpose or what people actually really need or want in their lives.

MM So we’re in the Values Into Action Scotland office. What is their role in ‘The Life I Want’?

DM Well, Values Into Action Scotland along with People First put in a joint bid to the Scottish Government to take over and run ‘The Life I Want’. So we kind of between us, my job as the coordinator is to just kind of oversee all the different work, make sure that nothing’s being duplicated, and provide any support that’s needed so that each of the work streams can meet their aims and objectives that they set, and People First, their role within that is to support individual people to take part. So if they need just like a little bit of support to prepare for the meetings beforehand, to go through the minutes, or just a little bit of extra confidence to come along and speak and actually have their views heard.

MM And do you work together as well as within the meeting doing work separately as well on different things?

DM Yeah, uh-huh. I mean we plan things together and we decide who’s best placed maybe to work a wee bit more on a particular topic or something that’s been introduced by one of the members, or any of the members of the group really, ‘cause everything that we do is led by what people tell us is important in their lives.

MM And are you still open to different organisations getting involved or is it still Values Into Action Scotland or People First, or can other organisations join as well?

DM We’re always welcome for any other organisations to join. So just now as well as ourselves there’s 22 partners in total. So that includes going up to NHS Greater Glasgow and Clyde all the way through maybe to some of the other like third sector organisations and service providers and the local area coordination team, but we’re always open for other people to get involved.

MM So back in 2016 you organised an event for people with learning disabilities to come along to, and I take it that event was for people to share their experiences of whatever. When the event was finished you came up with was it four core kind of like messages?

DM Yeah.

MM Well, not messages but themes that you wanted.

DM Themes. Yeah.

MM So tell us firstly about the event. How was that and did you get a good response off people to come along to that event?

DM Yeah. We had a good turnout. So obviously ‘The Life I Want’ had existed previously to VIAS and People First taking it over, but I think it was a very different kind of structure. So we were kind of quite clear that if we were going to be successful in putting in a bid to keep the project going, that it was going to need to be done in a very different way, and that way was with people being right at the front telling us, “These are the things that are important in our lives and these are the things that we want to work on and that we want to challenge”, and that was what that event was about. So that everybody who came could put that down. We already had a kind of a rough idea of what we thought, that obviously relationships was going to be a big thing and maybe people’s health and wellbeing was going to be a big thing as well, but what else came out of that was some of the younger people were talking about their experiences of coming out of school and not really feeling like they had a great deal of choice about what they did next. It was like, “Well you can do this college course or nothing”, or whatever it might be, or even people who had been in college and then what happens after that, and so what we called transition or moving on from school or college became part of that as well, and then the other thing, obviously a really strong theme is employment opportunities for people as well. So even then there was still some talk about housing and about what challenges they might face if they decided that they wanted to get their own home, and especially if they needed like support packages in place so that they could live in their own homes. So housing came in later, and we have a housing work stream now too. So we’ve now got five main areas of work, which is health and wellbeing, relationships, transition or moving on from school and college, employment and housing, but we’ve just been successful now in securing 3 years’ funding for the project from the Big Lottery. So at the end of October we’ll be having another big event and that will be to make sure that we’re still on the right path. So we’ll be talking about everything that we’ve achieved in all of those areas and asking people, “Is there still work to be done here? Are these still kind of like the real burning hot topics or actually is there something else? Is there something new? What else do you want to work on? What else do you want to challenge?” So although that’s what we’re working on just now then that’s not to say that that won’t change.

MM So what is the aim of ‘The Life I Want’? I mean what do you want to get out of it? Is it a bit like raising awareness of different issues?

DM I think raising awareness is definitely part of it. I think that certainly for the people who are involved there’s a personal element to that as well. So people are not only expanding their social circles, getting to meet new people, making new friends, increasing their own kind of self-confidence, getting opportunities to be involved in things that they might not have been involved in before, being able to advocate for themselves and for their peers as well, being able to share their experiences, and I think out of all the things that we do the things that are most powerful and the things that we always get the best feedback on is when it’s real people talking about their real lives, ‘cause that makes it real. I think all too often it’s easy for staff or professional people to kind of forget actually that sometimes the decisions that they’re making are about real people’s lives. So I think it’s a really good reminder every now and again just for that to happen, for people to get that refreshed in their memory and their minds about you’re making decisions about people’s lives and if you’re going to do that, then those people should be involved in that decision making right from the very beginning, but I suppose there’s a bigger picture or a bigger agenda, that we’re trying to make sure that services are as accessible and inclusive as they can be. So we’ve done a lot of work in helping other organisations with their information. They’ll bring it along to some of our groups and say, “What do you think of this? Is this accessible? Have you got this? Is this what you would need? Do you have any suggestions? How can we make it better?” We’ve done lots and lots of stuff like that. We always kind of like say, and probably a lot of other people that are involved in learning disability services will say as well that if you get it right for people with learning disabilities then you get it right for everybody.

MM Mmm. Mmm.

DM So it’s a good starting point.

MM And have you actually like came across that when you started this work, about people not having a say? When you were talking about going from school to college and they’d been kind of made to do that course without having a choice, have you actually came across that before?

DM We get a lot of personal stories. People tell us the challenges that they’ve had in their lives and to me always I think it’s a privilege to hear that and that people trust you enough to share that with you, and obviously as well because people don’t want the next generation of people that are coming through to have those same experiences. They want to make things better and make sure that things are happening in a better, in a more inclusive way, but for a lot of people then they’ve spent maybe, especially older people, maybe people that have spent periods of their lives being in long stay hospitals and being institutionalised. They’ve spent a lot of their life being told things that they can’t do and things that they can’t have. Whereas everything that we do is very much about turning that on its head and it’s like let’s start off with the viewpoint that everybody can achieve, and then if people need extra help and support to achieve those things then let’s figure out how we do that.

MM You told us about the 5 work streams. Each of them has their own meaning. So tell us about the meetings. I mean obviously you’ve got 5 areas, so do you have a separate meeting to speak about these kind of issues or is it all in a kind of one meeting?

DM Each of the work streams have their own meetings but then we also have what we call an operating group twice a year, which is a chance for everybody to come along and talk about what they’re doing in their groups, because really all of these things, they’re all interlinked. If we think about what society would deem a good life or an ordinary life then what do we all have in that? Like we maybe were at school or college, we have families, we have relationships, whether those are romantic relationships or not, but we have those relationships, we maybe go to work, so then we’ve got money and if we’ve got money we can have a social life, which then brings in friends in with that kind of like big circle of things. So all of our work streams are connected because if people have all of those things right, if they’re healthy, if they have good relationships, if they can work, if they’ve got money, if they’ve got somewhere nice to live in an area that they want to live in, well that really for most of us is what we would consider a good life. So within those groups I suppose just a little bit of background to the way the work streams actually work, each of those work streams has got an identified lead partner organisation, and that organisation is picked specifically because the work that they do and their aims and objectives as an organisation match what each of the work streams is trying to achieve. So for example for our relationships work stream, it’s Dates N Mates is the lead partner. And our health and wellbeing work stream is partners within NHS Greater Glasgow and Clyde and the Equality and Human Rights team. So they will work with the chair of the group, and the chair of each group is someone with a learning disability. Each of the groups set their own objectives for what they actually want to work on and then make a plan of how they’re actually going to achieve that, and I provide any support that’s necessary to make that happen. All of our minutes are done with the members of the group, who approve them in terms of that yes they’re accessible and they’re done in an easy-read format.

MM Finally, you’ve just finished a road show, I think it was last week, but out of that you’ve been doing a row of different road shows on the different themes. So tell us about what happens at these kind of road shows.

DM So one of our biggest focuses at the moment has been through our relationships work stream. So the group has done a lot of really, really good work and what came out of that was a couple of big events, which were so popular that people came to us and said, “It would be really great if you could come to us actually as a road show and give this presentation.” So the relationships group developed a resource for parents and carers that’s called ‘My Relationship, My Choice’, and that basically was written by the members of the group to say, “This is the type of help and support and advice that we need you to give us, and actually if you don’t give us that support and you don’t give us that advice then technically you could be putting us more at risk of harm because we might make bad choices because we’re not supported.” So that was then produced and we’ve distributed hundreds, thousands probably, of those, and when we did the events then the members of the group were all happy to get up onstage and tell their stories, and they’re all very positive stories, even up to one of our colleagues who finished it off, and we showed lots and lots of pictures of his wedding day, and I think that again back to that message earlier about sometimes people realising that they’re putting obstacles in people’s lives, and they’re real lives and they’re valuable lives, maybe broke down a little bit of that stigma. I think there’s still a lot of stigma around for people with learning disabilities, especially maybe if you have like more complex needs, that actually that you’re not somebody who should have a relationship in your life and it’s not for you. The feedback that we got from the people who came along, I mean we did it twice and over both days we had about maybe 130 to 140 people, professional people from different social work departments and different third sector organisations, as well as people themselves who came along with their families, maybe their parents as well for a little bit of support that way, and I think it was really empowering. It was really empowering for the people that took part in it, and they definitely got a lot out of seeing just how they were helping to change that kind of attitude and that kind of mind-set, and off the back of that we now have a relationships charter as well, which is a list of the rights that everybody should have around having a relationship in their life, and now we’ve been approached and we’re actually going out to various locations and doing that event as a road show.

MM And if you would like to find out more information about ‘The Life I Want’, all you have to do is phone the Values Into Action office on 0141 212 3395.

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