 Welcome to Pookey Ponders, the podcast where I explore big questions with brilliant people. I'm Pookey Nightsmith and I'm your host. Today's question is, does inspiration porn fuel imposter syndrome for disabled people? And I'm in conversation with Charlotte Claydon. My name is Charlotte. I live in a town called Harrogate in North Yorkshire. And I have a disability called cerebral palsy, which means I use a wheelchair to get around and sort of my legs and muffles are quite tight and things like that. And I've started to write my own blog called Wheelie Yorkshire Labs and trying to get sort of information about my disability and sort of issues around mental health and social care and things just out into the open and get more people interested and passionate about what I'm passionate about Wheelie. And it was through your blog that I kind of first came across to you and on social media and it inspired me to kind of ask the question that's the topic for today's podcast, which is does inspiration porn fuel imposter syndrome for disabled people? And you wrote really brilliantly about this and I just wondered if you would mind just starting off just telling us a little bit about what does that, what does it mean, what is inspiration porn and how might it fuel imposter syndrome? Well inspiration porn is the term I heard on a TED talk by a lady called Stella Young who unfortunately passed away a few years ago, but in the talk she sort of discussed this term and to her it's using images of disabled people, a lot of the time children say for example there might be a picture of a child with a prosthetic leg and underneath there might be the caption your excuse is invalid, like in the word invalid obviously sort of double meaning is used in the past to describe disability. So it's sort of using things like that and also people kind of uploading videos of people doing sort of nice things like inviting a young child with Down syndrome to a high school prom or something like that and but it's more kind of a lot of disabled people can look at it and think are you just doing that for the attention it brings the person rather than just doing it because you want to be kind of nice and you know it's quite difficult explain I'm a lot easier at writing down how I feel than saying it. I think you've explained it well so I guess if I'm interpreting right then the idea being there that if yeah there's been like a post that's gone viral where you know someone has invited a peer to a prom and the peer happens to have a disability of some kind that yeah your questioning maybe what the motivation might have been for that or how people might interpret it I guess. Yeah it's like recently I saw a video on Twitter of a young disabled girl with Sarah Pauly like I have and all it was was a trip of her walking up some stairs and I mean it was edited in a way where there was a bit of kind of inspiring music in the background and stuff but all the comments on it were things like oh what an amazing brave inspiring girl and it kind of made me think well if it was anyone without a disability doing that would they get the same reaction. Yeah I see what you mean and so yeah someone going about their kind of day-to-day life and you're you're wondering if that's really something that should be inspiring other people. So how does that kind of fuel imposter syndrome tell me a bit about your take on imposter syndrome and how this yeah might be affected by how people view disability at the moment. Well ever since I was kind of little I've had sort of people come up to me and go oh isn't it amazing you can you know go to the shops by yourself you know as a 20-30 year old woman just just people I've never met before saying things like that to me and and also things like and when I was younger I used to I still do love reading and I was given a book from a family member I was 10 years old at the time and this book was aimed at five-year-olds and it was you know it's like the people kind of don't have much expectation of what we can wait and do and as a citizen age and they sort of infantilize you to a certain extent and so that kind of leads to thinking well if you're saying that about me does that mean you're thinking that because you don't have high expectations of me because of my disability you know and it leads to that kind of question. To help me understand a little bit more so with your specific disability so cerebral palsy am I right in understanding that it's a physical disability but not you know there's no kind of cognitive impairment that would generally go with it or no uh cerebral palsy is generally I I still refer to it as a brain injury at birth basically and it can affect depending on what part of the brain is affected it can affect people in different ways like and for me it affects mainly my legs and my left side whereas some people it can affect the speech and and also there can be sort of learning disabilities but it's not like it's more of an effective disability rather than rather than an actual sort of part of cerebral palsy itself is something that could be like alongside it. I see I see so you might have kind of co-morbidities that might result in difficulties with with learning but so essentially you and I've read your writing you're you know you if I you know you didn't start with the the fact that that you live with a disability then that would be completely unapparent if one were just to read the words that you have written um but is the I you know the the idea here that that may be kind of inspiration porn and how people view disability might fuel imposter syndrome is that that you're wondering if you get praised for something you've written or done say that you're questioning is that because it's genuinely good or is that because they're saying oh well done you yeah yeah that that's kind of the gist of it really um because a lot of the time like whenever I receive praise especially from people I don't know I've always got that sort of thing in the back of my mind during considering you're disabled you know like you're really good at um writing considering you're disabled because people kind of I don't know I just have the worry that people just just because the way disability has been portrayed over the years I just worry that people kind of don't expect someone like me in a wheelchair whose legs don't work very well they just think because you sat down all the time you you're um you know your cognitive abilities aren't there either which is a bit of crazy yes completely completely uh yeah misjudged isn't it and does that mean then that you end up having to kind of aim higher like do you feel you've got stuff to prove or is it just something that you observe and let go um it's kind of a bit yeah and I think half of that problem comes from like obviously on the one hand I've got people kind of praising me for doing basic well things I consider basic um you know like um making my own lunch or going out to the shops and stuff but then on the other hand I've had people like my family and um sort of physios doctors that kind of people saying because you've got a disability you're gonna have to sort of push a lot harder and to work for things in your life because because there is going to be that discrimination there because people aren't going to sort of think you're capable just because of the way you kind of work um paper and sort of in person but you know so it's kind of that sort of opposite thing of on the one hand you've got people expecting very little of you but then on the other hand you've kind of been taught to push harder to get where you need to be so it's very that's what I find very difficult to kind of cope with a lot of the time and that's where my kind of perfectionism and the whole imposter in there and kind of comes into it I think. And how would you prefer that people did respond would you rather that you know if they're judging your writing say that they just disregard your disability and they focus in on the writing or is there a better way? Yeah I think I would rather people you know disregard my disability I mean obviously if I was talking about disability related issues then it would be good to know you know like if I have changed their perception of you know I think that would be a good thing but if say I've been judged against another like a naval body person then you know I'd want to know that they'd be giving me the same praise and criticism that they would with the person who didn't have the disability. Absolutely yeah because yeah that's that's fair actually. And so when you started your blog Wheelie Yorkshire Last which I love the name of by the way that's a great pun um what was your your kind of hopes and aims for it what did you hope it would do? Um I kind of well I've had sort of lots of thoughts in my head of things around disability and I've never been a lot of times I've seen things in the media and I've kind of moaned at the TV and my parents have always been like you know you should write all this down and and everything so my aim was to sort of just just get my opinions out there and to see if people write to them or sort of share similar views to me and sort of to make I mean it's a big leap but I would love to eventually help help to make a difference and change the stigma around disability and because there's a lot of stuff going on right now in disabled people kind of often the unwilling sort of victims of it even you know in terms of like politics and things like that and I mean thanks to social media there's a lot more people able to sort of give their voice about these things now because there are so many more disability bloggers and advocates out there so I'd sort of like to be part of that as well. And how has it been received? Have you had kind of good feedback on the things that you've written? Has there been anything that's particularly struck a chord with people? Um I think I've just I've had pretty generally good feedback of people I've not had any negativity a lot of people commented on my writing and really like my writing so it just made me feel pleased with myself because it's something that I've often I know I've had praise for but I've often had that criticism in my own head about it and I don't sort of believe in myself that much that I've been good and it's all given me the courage to write more and sort of things like that really I mean I would like to push it more if I've been sort of a bit sparked with writing recently because my mental health has been opened down but it's something I would like to push a bit further and maybe go into like giving more presentations and writing more articles you know when lockdown and covid either is a bit more in the future. Yeah so it's a challenge at the moment has covid kind of impacted on you kind of you know your kind of day to day because you you have support you you live independently but with support is that right? I mean I've been lucky in the way like my care agency have been very good and I have had the support there and my parents have kind of helped out as much as they can but in terms of like the care it has been frustrating is I think recently I don't know if it's more more of it being some holidays now but there's a lot of care has been off sick and on leaving things so it's been very ad hoc with who comes and time's changing and that's very very stressful and it's something I'm really wanting to sort out actually because it's causing me a lot of stress at the moment. And that's tricky if you're kind of managing your own mental health as well you know we know that one of the most helpful things for keeping ourselves on an even keel with stuff like anxiety and depression is knowing the boundaries and having a steady routine and that kind of thing and that must be really challenging if you don't feel completely in control of those things. Yeah it is because I know recently with my entire company a couple of weeks ago I had I have about 30 calls in a day like a lot of the just sort of popping calls out with personal care and things like that but I had um over 16 different people in my house like so the personal care so it's that constant having to explain my routine to people like you know how to move my electric wheelchair and put it on charge on a night time how to help me transfer into bed or into the shower and it's even though it is partly written on a care plan you have to it doesn't do it just just by reading it you have to kind of physically explain and point to things and where things go and when you're having to do that and sort of a lot of times a week then it can get incredibly frustrating and especially on a morning and an evening when you're tired and perhaps not wanting to spark conversation with people. Yeah and you're just trying to get about your day-to-day life I can imagine that must feel like quite a burden actually. Yeah and you mentioned in um you kindly gave me some kind of notes before we spoke and you talked about feeling quite passionate about wanting to change the social care system and particularly for disabled adults like yourself and I wondered if you'd be happy to talk a little bit more about that where you see the issues lying what you would like to change. Yeah um the main issue I find and seeing this a lot um from like the government and social media and everything during COVID and this lockdown period in that and a lot when people discuss care and the social care system it's often talking about elderly people and there's this whole thing of people being vulnerable and um you sort of get that image in your head of sort of elderly older people being sort of supported by care as a nursing uniform for the PPE and and everything and I mean it is kind of like that for me but it's not what I particularly want and I know a lot of other disabled people who um have um support and they use direct payment which is um a scheme where you get given money by your local council to pay for the care you need and I use that myself as well but I use it to pay an agency but a lot of people use it to employ their own support staff and there's not really much discussion of back in the media and and everyone um seems to kind of presume that having needing care needs um it's something you're only going to require when you're older and so you don't think but you know you could anyone can get disabled at any age need that support at any age it doesn't mean that it's only going to happen once you're 75 and older and it's a really great thing and so that do you think that that general perception means that it's not always or it sounds like you're saying it's not it's not always well tailored to uh young people like yourselves who might want quite a different quality and style of life than an older person who was receiving care yeah definitely I mean in my example the thing I'm getting most frustrated about but I have kind of sort of made peace with it because there's nothing else I can do about it but there's no um overnight service in my local area so I have to go to bed at 10 o'clock at the latest and um and if I need the toilet in the middle of the night I have to rely on family to come out and help me or if that's not available I have to use the very undignified thing of um urinating in a pad which I've heard a lot of people having to do that and it's disgusting that it gets to that point absolutely yeah it doesn't it doesn't I think regardless of age if it's something that with support you don't have to do then you would I would assume want to kind of avoid it so going back to that idea then so 10 o'clock is your curfew because you're disabled that's what this seems to be suggesting so does that mean that you know if obviously at the moment there's not a lot going on in terms of social life because we're in this yeah very strange time during the pandemic but in more ordinary times would that mean that you wouldn't be able to kind of go out with friends until later or or that kind of thing um yeah pretty much I mean I'm looking at my dad is really really supportive and you know I wouldn't be without him because if you know if anything if I did want to do anything like that he he'll say yeah I can help you with it but then I know especially with if I need the help in the middle of the night and he has to come it really affects our sort of um parent-child relationship because I'm more reliant on him at a time when I don't want to be and if things can get very heated and if he's tired and I'm tired we can end up saying things to each other that we don't necessarily need yeah and I think also it's just difficult when relationship um you want to be able to be father and daughter right not care and cared for I yeah I um experienced a similar thing with my grandfather um before he died he came and lived with me briefly and I ended up doing some of his care um and actually it was something that I ended up um not doing for very long because I just found it did completely change our relationship and I wanted to be able to do what he needed but actually it meant that I was no longer able to enjoy him as my grandfather because it just changed the relationship completely um so being able to have someone whose profession it was to do that and bluntly they did a much better job than me anyhow um meant that we were able to go back to you know really enjoying each other so I can imagine that must be yeah that must be a real challenge with with uh with you and your dad and as you say particularly in the night when you're tired and yeah must be yeah what do you um kind of uh you know what are your kind of hopes and aspirations you're clearly you know a really um really brilliant author um you write really well um and you've got some really strong views and you talked before about perhaps trying to um have a wider audience for some of the work that you do is this way you kind of envisage yourself kind of um spending your energy with regards to disability uh rights and um making those needs heard or do you have other aspirations as well I mean I'd love to eventually you know write more and and sort of share my experiences to help other people in my situation and to help change the kind of system country wide really and I know there are a lot of other amazing people out there who are writing about similar issues but I guess the more people talk and shout about it then the more likely things will be going to change and things so it is something I really would love to do more of in the future and maybe also sort of give talks to businesses and services to help them sort of and change their attitudes towards disability and sort of promote a more positive and inclusive outlook across my local area and the wider country as well and if you were giving those kinds of talks would it be that you've got specific ideas about things that they can change to make things better or is it more that idea that you'd like them to meet you and see you for who you really are and help them understand hey you know what people like me we are more than our disability please include us or is it a combination um I guess it's kind of a combination because I think I work with a company sort of an open company business called Opening Mind and all the people that work for the company either have experience working with disabled people or have disabilities themselves and the thing that we try and promote is that you know disabled people you know we have a lot of spending power and so as companies and organizations you're doing yourself and giving yourself credit by making your businesses as accessible as and inclusive as possible and that doesn't always mean physical access because we know a lot of shops and things like that can't be physically accessible but you know it could mean offering different types of services like online and sort of things like that really and and it is kind of trying to explain to people the thing and that we are like anyone else you know we would want to go go shopping with family and friends and sit and have a coffee and buy things you know we're not just kind of pitiful charity cases and I think a lot in the media over the last sort of decade as they're about people receiving benefits for the disabilities a lot of people don't seem to understand but those benefits you know we do have to use them in a certain way like my care component my disability benefit but all goes on paying for my care so and you know it's not like we're giving things for free we have to really work hard to prove that we need to absolutely so trying to explain that as well sounds like there's a lot of barriers to overcome here for you yeah yeah there is I mean I've been lucky about things like and my benefit assessments and stuff have gone pretty well and I've just been sort of given them by the information I've provided where a lot of people have to really fight and appeal for things especially when it comes to people with mental health issues and learning disabilities and autism and things like that they really because it's not a visible disability you really have to fight and show how you you know that you do have a disability that things make things harder for you to cope in daily life I'm just glad in a way that you know my disability is obviously people kind of don't go the other way rather than patronizing you it's kind of almost people get sort of put into a corner and accused of facing the disability or the condition so yeah that's hard what would you advise your younger self because I get the impression talking to you that you've been on quite a journey with your kind of I don't know self-identity and trying to address some of those sort of perfectionist tendencies and so on what do you think would be yeah what have you learned you think that your younger self would do well to hear I think when I was younger I think a lot of the things I now realize are part of my disability but things like I jump out of my skin a lot of loud noises and things like that would probably I wish I could have sort of taught myself more about my disability and what the you know the things were that were part of my disability and you know that they weren't part of me it wasn't anything to be guilty about it's just something that happens and you know it's not not sort of something to feel bad about I think that that's the main thing is the main it's difficult because I think I still am struggling a lot with my identity and who I am I'm just part of my disability because I think growing up I've always not wanted to see myself as disabled you know because a lot of people I was around who were disabled were a lot sort of worth off the minute in terms of you know they had more severe learning disabilities and and it was a very difficult thing to see growing up because I went to a mainstream school so I there was only like two or three of us in my school but had a disability so it was a very difficult thing and I think I did have that judgment there when I was younger and I think it it's been difficult to get over so you presumably you were in a mainstream school because your your needs were were physical but you were able to keep up with your peers and your school was able to make adaptations so that you could actually access the physically access them and so does that do you think that that because presumably not all young people would be in the same situation and some of them might end up attending a different kind of school do you think that kind of would flavour who you are like where you end up going to school whether because you said you don't necessarily really identify as disabled kind of first and foremost because there are others who are worse off I mean it's interesting because I have a I have a younger sister who has Down syndrome and she went to a special school and I think she's kind of because she went to school with again I think a lot of people there had various different disabilities and when people for example if they have epileptic fits or you know like meltdowns and stuff if they have autism and that sort of thing wouldn't phase her as much I don't think because it as it would like if I had seen it I'd probably have been quite scared of it and because I'd not experienced it before yeah and you know so I think it's a very different thing do you get on well with your sister and yeah yeah I get on really well with her she she lives independently supported by a care agency as well though it's a different completely different setup to mine and not her care agencies specifically and helps people with learning disabilities and it's a lot more casual and less medicalized in a way which kind of I love and they're all really great and she loves living independently now and I get on really well with her she's quite a bossy but yeah I'm getting really well and I think that must be quite interesting actually that you have yeah such different disabilities and I think that is something that people can be guilty of really a bit like you said right at the beginning about how you know people assume that because you're a wheelchair user for example that maybe you wouldn't be able to write so well and I think sometimes that disability can just be seen as this you know kind of I don't know homologous lump and that people are similar whereas actually you and your sister your needs are entirely different yeah yeah how I mean I'm interested about the fact that you both um you both live independently but you're living independently with conditions that many people don't live independently with is this something that you each particularly felt was really important or that your family really encouraged or how was this how did this kind of come about if you like well I went to university when I was 18 and I spent sort of three years away I lived in halls and I think originally my parents were worried about me moving away from home and they originally did look at some kind of boarding school for people with disabilities where you'd learn independent skill and the stuff I I really didn't want to go somewhere like that because it wasn't academically um sort of good enough for me I'd sort of it was very kind of basic in terms of not I think it was as done instead of a level and I was I got really high-graded on my GCSE so I didn't want to go somewhere like that so when I did go to university it was really hard for my parents to sort of let me go and make that leap but um I got a lot of support from um social care and things like that to put things in place and then for my sister again they really wanted her to um sort of get that experience of going to kind of college and learning independence skill but because of all the um system with I don't know if it was called like the green paper and there were loads of changes to special educational needs support um a few years ago and our council didn't give my sister the funding to go to um the boarding school so she had to do her like post-16 education locally at a local college and still live at home with my parents so it took them quite a long time to figure out where she could go and live and be supported in the right way to um live independently and thankfully she's taken to it really really well because I know they were so frightened when she first went away and but their support team she has now they're brilliant with her and she has her own routine and I think that helps her a lot um with the routine because she gets a rotor of who's coming every day and and what she's cooking for tea she loves cooking her own meals and everything and so that's all been really good and she still brings us every night and started to check up on us and let us know how she's getting on so I think it's just great like she's got that family support and their social care support as well yeah I think it's important isn't it that she's able to kind of forge her own way and she sounds like a pretty um independent spirit is does she get the same uh sort of thing that you do about this idea of kind of people being a little bit condescending and assuming that she would be able to do less than she really can and she does in a way and I've I've in in a way she gets it in in another kind of way as well because because she's obviously an adult and but because she does kind of act in some ways younger than she is just because of her learning disability and everything when she does do things but are kind of more grown up for you know the whole thing around having a relationship with someone and just in kind of talks about having you know and partners from tv programs that if she likes and you'll find that you often get people kind of laughing at it and finding it funny whereas if it was anyone else her age she'd probably think that's not appropriate to be talking about that type of conversation in this situation so in some ways kind of she gets away with things or made a joke of things that anyone else of her age would be kind of better look at it completely differently. And how would it be better for people to respond in those situations do you think? I don't know just sort of talk like would any any other person her age like in a way there's a very good video I've seen from an organisation I think they're called Open Future Learning and it's a video of a of a man with Down syndrome being supported by a young support worker going out and doing his shopping and he has someone come over to him while he's buying some toilet roll and says them oh isn't it so inspiring that you can buy your own toilet roll and talk to them like that and the guy with Down syndrome asked this support worker why is this man being so patronising and and it's that kind of thing really it's it's people people do kind of expect because you might have a little obvious learning disability and if you do say things like you swear and stuff they might turn around and go oh that's not very appropriate for you to be saying stuff like that so it's kind of with the infantilising so it comes with you shouldn't be acting like the age you are. Yeah I see what you mean so actually your sister's a grown adult and if she wants to shoot her mouth off that's up to her right yeah yeah yeah. What do you wish that that people kind of knew about cerebral palsy I've shown my complete ignorance of the condition and I'm sorry and thank you for teaching me a little bit but what do you think everybody needs to know to understand a bit more about it. I think the main sort of ignorance that comes with cerebral palsy I think is is the whole thing of people assume that it's a learning disability or or if you are struggling if you have problems with speech with it that you've got a learning disability and I think it's important for people to understand that it's a very very condition and it affects people in so many different ways just just like with a lot of disabilities and conditions really just just because you have the label it doesn't mean that you're going to act and think exactly the same way someone else with cerebral palsy is going to act and think it's just it's just the way your body moves and reacts to things you know you just is individual than anyone else out there that's the main point I think. I think that's a really important thing to remember so from what you said then that it might be sometimes that people make assumptions about kind of intellectual capacity based on someone's physical ability to speak and communicate so there might be a bit of that almost locked in kind of feeling where the thoughts are coming but it might just take me a little bit longer to say it just the same way it might take a little bit longer to climb the stairs but it doesn't mean that yeah intellectually. And as well I know of a couple of people with cerebral palsy who aren't able to communicate in that way and unfortunately they get a lot of people treating them like a child or even a baby sometimes just but because just because they can't speak or they use a communicator doesn't mean they don't have the intellectual capacity to you know say and you know do what they want. It's like I think one really famous person at the moment with cerebral palsy is then the comedian lost voice guy. Yes. He has cerebral palsy and he is non-verbal and yet he's really funny and it's important that people who are non-verbal do have the capabilities to say what they want to be able to do and that's a really thing that I find quite sad when people who aren't able to communicate aren't given the opportunity in the devices to be able to communicate how health is best for them. I think that's really frustrating and sad. I saw a really moving in a horrible way talk not long ago by a lady called Carol Allen who talked she was talking about special needs and you know it was a very broad talk but one of the examples that she gave in her talk was about a young boy who hadn't been given any of the devices that he needed to communicate and he was treated like a baby and at the age of 10 he moved to a new school he was 10 but he moved to a new school and his needs were fully supported and he learned to read very quickly and it became apparent very fast that exactly as you're saying intellectually he was completely on a par with any other kid his age and for all these years he'd been treated like a baby like literally treated like a baby because his physical needs were such and it was heartbreaking thinking about that poor boy what that must have felt like although it had a happy ending and he very very quickly caught up and excelled amongst his peers but yeah it made me wonder you know how much that might happen and where someone's physical needs mean that we just completely don't understand what a brilliant brain they might have yeah I think it's very yeah very frustrating so what's next for you were you working on any any new blog posts or anything like that at the moment well I've got a lot of thoughts in my head about what to write next it's sort of having no motivation to get down and write it really but one thing I really want to and discuss in a next blog post is this whole thing as a lot of you see a lot nowadays of people who have children with cerebral palsy fundraising for operations to have abroad because some some sort of stem cell operation to help the children walk and even though I think the parents have got the best interest for the children at heart and they are caring and that I think a lot of the discussion around it and again ties in with inspiration porn and all that kind of thing of sharing videos and saying so basically kind of suggesting that it'll be a death sentence if the child ends up using a wheelchair which I think is a very sad thing to suggest and as well I found out recently through certain new organisations like I think the cerebral palsy group for adults I've seen on Facebook is when you get older your disability can affect your movement and things can change so that'd be interesting to write about that as well and how much sort of things have changed for me growing up and how much is is it me not moving around and doing enough for myself and how much of it is um sort of gradual aging process with cerebral palsy well that's interesting what are your thoughts on that um it is very it's complicated because I've not really had much physio or anything since I was about 16 and so my parents obviously just tried to help me get so far and but I think with my depression and everything that I've gone through with that um I have found it difficult to move as I've eaten more and put on put on weight and things like that and and with my parents especially my dad there is that thing of oh the reason you're not you're finding it difficult is because you might just say for example might need to lose weight or need to exercise more and things like that and it's very difficult when the information isn't out there um to find out how much it is to do with my condition and how much of it is to do with sort of physical needs that can be changed sort of by yourself so that's hard so you don't know how hard you should be working because you don't know whether you're trying to change something you can change or or whether this is a kind of natural progression is that yeah and I think from what I've read um it doesn't seem to be that much research out there of how cerebral poly affects people as they get older because a lot of information that seems to be out there when you do your sort of general Google Google search is aimed at parents and how they should help their child so there's not much out there about adults that's interesting why do you think that is just what yeah why why why would there be less about adults I don't know and I know with a lot of cases where children have far more severe cases of cerebral poly say they can't communicate and they might have problems breathing and stuff like that there is a higher chance that they die at a younger age so I don't know if it's tied in with that and maybe I just I'm not sure and why have you not had much physio since you were 16 is that because you just get offered it as a child and not as an adult or is it something you chose not to engage in or when I was when I was sort of 16 I really wasn't you know at that teenage stage I didn't really want to be doing much for the year and and it was sort of a combination of me kind of stopping it and feeling I've had enough and then sort of moving to adult services they don't offer you any regular treatment as adults you either go see GP who then refers you for like a couple of sessions and then that's it and all they give you exercises to do at home which is a very difficult thing to do when you know you don't have regular people supporting you who can who can help you with that kind of thing yeah that's yet another thing you've got to explain to them presumably yeah it's it's mainly the case of I think just as soon as you get into adult services you're kind of expected to do everything for yourself I feel yeah you're not given that help when yeah and and finally do you mind if I ask about your your mental health a little bit and have you found that it must be a little bit tricky having that into play of kind of mental health issues and cerebral palsy as as well and I wondered whether you felt that you know it I don't know whether it impacts in any way how you might be able to access help or support or the things that you might be able to do for yourself I mean what's been your experience with your mental health I guess um well I thought personally I've had a lot of ups and downs in mental health and so in the last few years I have had depression anxiety and I have had suicidal thoughts and self-harm and things like that and think one of the things I know when I a few times when I've been to my GP a lot of it I think initially they kind of put it down to the isolation I must feel as a disabled person not being able to get out and about and and trying to encourage me to sort of socialise more which I completely understand but it kind of feels like they kind of think oh you're disabled you mustn't have a social life that must be the reason why you're depressed it's kind of put down to oh it's it's no wonder you're depressed when you've got all this stuff going on yeah which is true but it's kind of at the same time it's I think a lot of mental health services don't have an understanding of disability and how it affects you. What do you think they need to know because that that strikes me so odd I mean I've had very similar issues with my mental health and obviously I'm able bodied and my GP would never suggest that oh this is because you don't get out enough you know the their thoughts would go to something entirely different and yet actually the genesis of our mental health issues could be very similar or very different. What do you think you know if there are there'll be all sorts of different people listening to this and some of them will be doctors or nurses or people working within the the healthcare professions what what do you think it'd be helpful for them to understand about mental health in people who have a kind of disability? Big question sorry. It's difficult because I mean I have been on the mental health team for a couple of years and and I always find but I don't know if this is just disability related or not but I find I go and then I'm never kind of given the answers I'm kind of expecting it always kind of feels like it's put on me to change but then when when you don't know kind of exactly what it is that's causing a problem or also when you know when the things that are causing you the problem like with my care situation I can't change it and do anything about it so how am I meant to kind of move forward and feel like better in myself and have more control over my life when they can't do anything to change the situation it's very very difficult because it is things that everyone else in my life they'd be able to say you know give yourself more boundaries and all that kind of thing and but you know I can't always do that Yeah it sounds like it's almost like a combination is needed of them looking beyond your disability and seeing you as you know exactly like we've talked about throughout this discussion really looking beyond your disability and considering your mental health in the same way that they would any other person but then on the other hand when thinking about what might be some of the factors here that might be impacting and that might you know need to change or influence things that they do need to take into account the the difficulties that you might face with regards to things like care and even just going back to that basic example of you know the GP saying oh well you need to get out more and well that's fine but if you've got to be back you know and in bed by 10 o'clock at night that can make getting out more a bit tricky sometimes can't it and as well the whole thing was going to bed it's like the care room might be due say for a half hour call so it's kind of making a daily routine really stressful because I have to make sure I get everything done that I need to do before that person arrives because once I'm in bed I can't get out again until seven o'clock in the morning and when it's someone you don't particularly get on with helping you it just it adds to the stress and so instead of getting into bed all calm and relaxed and ready to sleep you've got all sorts of feelings going around your head and it's difficult to relax because I know often I've read stuff on you know sleep and what to do if you can't sleep at night and it's often get out of bed and go and get a drink of water and things like that and I can't do any of those things there it's it's just very difficult when a lot of the guidance isn't really helpful for people who aren't able to physically move around themselves. You're making me really think now about some of the guidance that I've written in the past which would not have in any way catered to your needs so I apologise and I'll try and do better in future because I'm sure that you're far from alone actually in in needing advice and guidance to how to manage your mental health as well as your physical health. What thoughts would you like to leave people with so people who have tuned in and listened to the podcast what would you like them to go away thinking about? So really the the main thing I want people to know is you know just because we have a disability you know we have we're as individual as anyone else and also the main thing is please don't when you see stuff about social care in the media just don't assume we're all little or grannies kind of close to the end of our lives you know and a lot of us have I hopefully have decades left to live and I want to be able to live a life I don't want to be kind of restricted by my social care I want it to enable me to do things and I think a lot of stuff around disability whether that's mobility aids or or social care support is always portrayed as being a restrictive thing and stuff whereas in fact a lot of these things give us the freedom to do things that we unable be otherwise unable to do so yeah just think of things like that in terms of freeing and independence rather than restrictive and pettying and that situation