S2E2 – Learning Disability and Mental Health, with Paul Wilshaw

W: Hi everyone, the following episode includes a brief reference to suicidal ideation and a potentially triggering comment made by a healthcare professional who is not identified in the conversation. There are also quite a few references to research again and you’ll find links in the show notes. Please take care whilst listening and for signposting to support, visit our website anyamedia.net/LivelyMinds

 

W: Hello, my name is Will.

 

E: And my name is Ellie.

 

W: You are listening to Lively Minds, the podcast about mental health challenges that go beyond the ebb and flow of the everyday.

 

E: The podcast that looks at how developing our understanding of mental health issues influences the ways that we address them.

 

W: Before we get going with today’s episode, we just want to say a big thank you to the person who gave us a very generous anonymous donation at our Buy Me a Coffee page. You know who you are. It’s very much appreciated. If you’d like to support the show too, then you can find our Buy Me A Coffee page at buymeacoffee.com/livelyminds.

 

[Music]

 

E: In today’s episode we are talking about the interconnections and misconceptions surrounding

mental health and learning disability. 

 

W: According to the charities Mind and Mencap, learning disability and mental health are often muddled. At the same time, some studies show that learning disabled people are at least twice as likely to struggle with their mental health than the population at large.

 

E: To guide us through this topic, we are delighted to welcome Paul Wilshaw to the show. Paul is an associate producer at Mind the Gap Theatre Company. His role includes supporting the company’s producing team and project delivery. As well as being an advocate for Mind the Gap, Paul uses his own lived experience to be an advocate for learning disabled people. Paul is also presenter of Mind the Gap and Disability Arts Online’s podcast, Disability and… I always want to say the dot dot dot.

 

W: Welcome to the show Paul.

 

P: Thank you very much for having me. Really do appreciate it.

 

W: I guess we should start off just by saying that Ellie and I both know you outside of this podcast, known you for a while and it’s just really great to actually finally be able to have you on the show.

 

E: Definitely.

 

P: It’s great and I know Ellie from We Shall Not Be Removed and that was a great experience, except for, wish we didn’t have to go through that experience in the first place but we did.

 

E: Yeah

 

W: Just to explain that We Shall Not Be Removed was the Disability Arts Alliance that came together during the pandemic to try and work out how we could have a better landscape for disabled artists during and most importantly, following the pandemic as well, right?

 

E: Yeah, 

 

P: definitely.

 

E: Simultaneously it feels like it was ages ago that me and Paul were seeing each other on Zoom all the time, but actually it also in a way feels like it was like a month ago.

 

P: I know.

 

W: So Paul, thanks for coming and talking to us. To start off with, as I mentioned in the intro, according to both Mencap and Mind, Mencap being a charity that works with learning disabled people, Mind being a charity that focuses on mental health, learning disability and mental health

are often confused. So, we were wondering, do you agree with that? And if so, why do you think that is?

 

P: I think it, it does get confused. A lot of the times that you can’t actually tell what part is of you, what part is your learning disability and also what part is your mental health. And if, if you don’t understand it yourself, then in a way, how can you expect other people to understand it. So I mean, I have depression, I got diagnosed with that, but I’ve also got learning disabilities and cerebral palsy. So what part of my personality is my learning disability, what part is it my mental health, and what part of it is my cerebral palsy?.

 

It’s a really hard thing to understand in myself, so I do understand why people get confused. I think though people do get confused, I think it’s also that fear that people have of the unknown and the fact of that there’s so much now being in the media around mental health, and people are trying to understand their mental health but also trying to understand have I got this disability? or is that part of my disability? And that sometimes, it’s hard to actually know yourself. So yeah, no, I think there is definitely some confusion, but I think there’s, people are trying to understand more, well I’m hoping so anyway.

 

E: It’s hard trying to figure out which bits which isn’t it? And then at the end of the thought you’re like, well, actually it’s just sort of all the bits, a bit like a jigsaw or something. 

 

P: Yeah, you have to put it all together. I think it’s also that thing of that everyone’s scared, but also there is fun around having your disability and having your mental health because there is fun in that. 

 

E: Yeah. 

 

P: I think that’s something that people are like, how can that be fun? How is that fun? But you can’t just, you’re not always down. 

 

E: Yeah

 

P: And I think that’s a thing that people just think, oh, if you’ve got depression, or if you’ve got this, you’re always down. It’s not always the case. It’s also that support that you have in place as well. 

 

E: Yeah.

 

W: Can I ask Paul, if I had to put you on the spot and say, have you thought about what might be some differences between mental health and learning disability?

 

P: I think my mental health fluctuates and I try not to use jargon words. So what I mean is it goes up and down. My learning disability is there all my life. 

 

E: Yeah

 

P: It’s the best way I can describe it. My learning disability, I learn different from and I need support. With my mental health, I get support but it’s not as easy. And sadly, I’m one of those people that probably tries to cover up and puts a face on stuff too much. And what I’ve started to realise more recently is that people know when my cerebral palsy is playing me up because I’m shifty and all that. And I’m, but with my mental health, only a few people will recognize when I’m going through one of my situations.

 

W: mmm

 

P: I think, yeah, there’s so much. So, no, there’s no, I think what mind and mencap put is very honest and say that it’s not the same thing because it’s not. And not, I mean, not one person will have the same situation. I mean, my situation is different than other people with mental health situations, but you need to be there to support everyone. And so, yeah.

 

E: Yeah.

 

P: And something that Mencap do talk about is how one of the problems about the confusion is that sometimes a learning disabled person might go to their doctor, and the doctor will just assume that whatever they’re presenting is part of their learning disability, whereas in actual fact, it could well be a mental health issue. And the other thing they mentioned as well is that sometimes there can be a lack of connection between mental health and learning disability services within health as well, and a lack of coordination.

 

P: A prime example of the doctors and stuff is that I went to my doctor and I said that I was feeling suicidal at the time and the doctor said well you don’t have much to live for anyway do you?

 

E: What? 

 

P: Yeah I had that from a doctor. 

 

E: Oh my gosh Paul that is absolutely dreadful. 

 

P: Yeah and so yeah I had that experience and I mean I can talk about it now but I’m like at the time I was like okay. And I have to laugh about it because I’m like, whoa, OK. 

 

E: Good God

 

P: But I had to go out there and just– I had to chuckle to myself because I was like, what else am I going to do here? I think it’s also people – doctors don’t understand as well. And I don’t think they’re getting the proper training as well. I think that’s a major issue, is that if they don’t – I mean, I work as a role player and I know that situations of where, some people have never worked with a person with a learning disability.

 

W: When you say you’re a role player, you mean you work in training doctors?

 

P: Yeah, I work with clinical psychology students around.

 

W: Okay, that’s okay.

 

P: So if they’ve never worked with a person with a learning disability, then how are they meant to know how to also work about mental health and all this kind of stuff. 

 

E: Yeah

 

P: So it’s getting those experiences to the right people. And I really enjoy doing that because it’s like, this is training up the new doctors and the new people are going to be going into those situations of working with people who have learning disabilities. So I have, and I don’t just work with myself, I work with a group of people that do it with me so it’s that experience. Yeah there’s been a few times where you’re just like okay what’s, this is the new generation it’s, and yeah it’s just seeing that as well. 

 

E: Yeah so I guess we just need more of that then don’t we, we need more courses and things maybe for GPs not just for specialist psychologists? 

 

P: Yeah definitely.

 

E: Yeah and I know from friends with learning disabilities and also like friends with children with learning disabilities there seems to be a lot of being passed from one service to another with neither service wanting to support. 

 

P: I think it’s 

 

E: It’s really hard 

 

P: Its really interesting that it’s the passing of from young people to adult services and that transition period that’s not. I don’t think groups talk to each other as much as they should.

And that’s where a lot of people are missing the gap. I was going to say minding the gap, but it does seem that there’s a lot of young people that are having that problem of that they go from one service to another and they’re not all joining up.

 

W: And I guess that kind of, those interactions with the health and social care systems that are disjointed are going of course, have a pretty negative impact on people’s mental health as well, right?

 

P: Yeah. I mean, it, so my experience, I, so I’m more putting into services when I was an adult than when I was a young person, a youngster.

 

E: A youth!

 

P: A youth of today.

 

[Laughter]

 

P: But yeah, I think, so my experience has been more when I’ve been, I have had some situations when I was down south, but I’ve had more situations when I’ve been up north around my mental health, which means, yeah.

 

E: There are studies that have said that people with learning disabilities are more than twice as likely to experience mental health problems than people without learning disabilities. And I guess we’ve just sort of said one of the reasons that might contribute to this is like the fact that the services that are meant to support both those things aren’t really capable of supporting both at the same time it seems. But is there anything else that you think like gets in the way of, of learning disabled people being able to sort of manage their mental health and…

 

P: I think stigma, the stigma around it getting like getting people to talk but I think there’s an issue around that as well of you don’t know who to talk to and I mean there’s great organisations out there but there’s definitely still issues around that topic. And yeah, just knowledge as well, depends on also your age, of the person.

 

E: Yeah thats true

 

P: I think that’s a major thing of like, if you’re in the younger generation, and I don’t know the statistics around this, but they’re probably more likely now to talk. If you’ve got to learn to speak as well, compared to if you’re in the older generation that been brought up, stiff up a lip, you’ve got to carry on and all this. And that does happen in the Learning disabled community  as well, that you’re okay, you can survive, you can cope. I think that’s probably another thing. But also, what’s in your area? What organisations are around that actually can support? I mean, I’ve got a great family here at Mind The Gap who support me all the time when my health goes down. 

 

E: Aah 

 

P: I know that I can talk to them and they know that if I need to go down south they allow that to be with my mum. So my team, my up here is like a family to me. So I’m like, I know who to go to when I need to.

 

W: That’s brilliant. Yeah, because I think having someone you can go to is so important, as you say and being able to communicate and talk through the challenges that you’re having. And I do wonder whether, you know, I work with a lot of learning disabled creatives and artists, often I find learning disabled people have a different way of communicating than non-learning disabled people. This idea of that some people are nonverbal, that they don’t speak, and they don’t speak necessarily. I guess that that is going to be putting more and more barriers, isn’t it, in the way of somebody being able to have a conversation with somebody about how they feel?

 

P: I think there’s definitely ways of communicating even if the person is non-verbal as well, and

I think you have to always take stuff as a one-to-one basis and how does that happen but also does the services have enough time nowadays to actually deal with that situation as well?

 

E: And that’s so awful isn’t it because that’s just an, you know, it’s an access need and you’re right, you’re very eloquent and you speak very well and quite a lot and yet you had that experience at the GP so it’s awful if stuff like the GP or whatever, what does someone do who needs someone to have more patience and work out different ways of communicating?

 

P: Yeah and also knowing that sometimes the old school methods don’t always work. I mean I’ve had situations where I have seen balloons being given in certain things and sweets and stuff like that.

 

W: Given to adults?

 

P: Yeah, being given to adults.

 

W: Oh, I see. So like, kind of, proper full-on infantilisation.

 

E: Someone’s trying to communicate something and they’re like, being given a lolly and a balloon. Do you want a lolly or a balloon? 

 

P: And it’s just like, this is in the role-playing situation. And I have seen that and I’m like, 

 

E: I hope you tell them where to go when that happens.

 

P: I’ve seen people walk out. I have seen people walk out before, but that’s happened. So, yeah, and it is that. It’s that thing of, yeah, it’s worrying.

 

W: I should say that on the Mind website, there is actually a list of organisations that particularly work with learning disabled people who have mental health problems that I’ve just found. 

 

E: Thats good.

 

W: So I’ll put that link in the show notes in case anybody’s listening. and we’d appreciate some signposting.

 

P: Yeah, and I do want to say there is really good organisations out there. I don’t want to just think that people think that I’m just slating everyone because I’m not. I think there’s some brilliant organisations that really do support people with disabilities and mental health. You really have to be out there to support. And yeah. 

 

W: Great.

 

E: Let’s go to a break.

 

[Music]

 

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[Music]

 

W: Do you think that looking at mental health from the perspective of learning disability provides any fresh or helpful perspectives?

 

P: I don’t know on that, if I’m honest. I think there probably is. If you’re doing research around that topic it needs to be done together, it needs to be a collaboration rather than being researched especially around mental health cause I think if you’re together you know that you can support each other in their work.

 

E: Yeah how are you going to get like any kind of good quality research if you’re not including people with the lived experience helping to guide that actual research as well. 

 

P: Yeah. So something that you asked earlier about what’s the things that also affects mental health. I think that was the word. For me also it’s night time. Being alone is a major thing for me. And at night time that’s when usually my mental health goes down because I am used to, I used to be around my mum a lot and my family and now I’m on my own. So it’s kind of, I talk to my mum a lot, but it’s like, it’s a different feeling. And being up here by myself at night time and on the weekends, it’s completely different. So I think that’s also, I think that also is the loneliness. It’s also a major thing.

 

E: Yeah, I used to have that at the night time I used to find so difficult.

 

P: Yeah.

 

E: It can be, yeah.

 

W: And again, what you’re saying is definitely backed up by research because loneliness is something which disabled people are far more likely to experience than non disabled people, sadly. And so I guess this points again, doesn’t it to there being all these factors in people’s

lives that are having that regular impact on mental health, which of course applies to everybody to one degree or another. But I, from what I can tell from what I’ve seen in terms of the research that’s been done, impacts disabled people, including learning disabled people more so.

 

P: Yeah.

 

E: Actually, I was about to say something. It just ties right into the next question that I had, which…

 

W: So much as we know what we’re doing, isn’t it, Ellen?

 

E: I know, because I was thinking about the, yeah, I used to also find it really hard, like not, you know, at night time, I used to find it really hard if I wasn’t distracted by doing loads of other stuff. But actually, once I got physically a lot more physically disabled quite suddenly, that’s when I actually started finding it easier because I basically just invested in loads of memory foam pillows and video games and then being at home on my own became like, you know, I was sort of like forced to make it really fun. And so now I’m good at it. I like it. Is there anything about your disabled identity, which you’ve spoken very eloquently about on the disability and dot dot dot podcast that kind of helps you with your mental health?

 

P: Yeah, it’s a really good question and I kind of separate it all. It’s a really interesting thing because I just, which is really interesting also because of me saying about that I, it’s two different things. So I do separate my mental health and my learning disability and my cerebral palsy all differently. But I have been thinking about that and I’m not really sure because I have my disability, that’s… yeah,

 

E: I guess in a way, like the… you know how you were saying, like, such a… you know, Mind the Gap is like a disabled theatre company, isn’t it? Yeah, 

 

P: it’s actually a disabled… or disabled and autism theatre company. 

 

E: Yeah, and that… you were saying before that that, like… that community is like your… it’s like a second family kind of thing.

 

P: Yeah. 

 

E: So I guess in that way, that’s like, you know, a way in which sort of being involved in specifically like disability stuff, it’s helpful. That’s created that like caring community.

 

P: Yeah. And I think, yeah, just having my friends around me as well, it’s a major thing. That’s not just for work, but yeah. And I used to play football a lot. So that also was a major thing for me. 

 

E: Nice. 

 

W: Thank you so much Paul.

 

W: Is there anything else you want to add Paul about the interplay between mental health and learning disability? 

 

P: All I’ve got to say is that everyone is different and no experience is the same and to look after yourself is a major thing and also that, don’t feel that if you are going through a bad day or about reach that your failure because of it, we all go through it and there is people out there to support and to care and yeah. 

 

E: Oh that made me a bit teary in a nice way, that’s so right.

 

P: And to the younger generation as well that there is so much out there and if you’re going through a bad day at the time, seek help, seek the right support, okay? Because you’re all valuable.

 

E: Thank you so much. What a lovely message to end on.

 

W: Thank you, Paul.

 

[Music]

 

E: Thank you so much everyone for listening and please tune in again in two weeks’ time for another episode of Lively Minds, the Mental Health Podcast.

 

W: Please note that this show does not constitute medical advice and is not a replacement for seeking professional help. You can find signposting to support on our website at

www.anyamedia.net/LivelyMinds

 

E: Make sure you keep up to date with our shows by subscribing wherever you get your podcasts and find us on social media at livelymindspod. 

 

W: Take care and bye for now. 

 

E: Bye bye. 

 

P: Bye.

 

(whooshing)

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